# How are you feeling today?



## afidz

*MY IDEA:*
So, long story short, my boyfriend has joined a forum to help him quit dipping (gross, so glad he is quitting). In his forum, they have a "role call" to hold each other accountable. In this "role call" they add their name to a list, and either how many days they have gone with out dipping or admitting if they broke down and gave in. 
Obviously, there is no need to hold each other accountable here, its not that kind of forum, but I was thinking we could do something like this here, except, its more like a "check in" 
There are a lot of times that I just want to get something off my chest or simply say how I am feeling that day but I don't want to create a new thread, so I came up with this idea. 
I don't know if anyone thinks this is a good (or bad) idea, or if someone has a better idea than me.
a "check in" doesn't even have to be about Crohn's, it can be about what ever is going on with you that day. Interested??


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## afidz

So, I will start :
Its 5 am, and I haven't' gone to bed yet. Right now, I am almost pain free and too excited to be pain free to sleep. I was laying in bed and I was trying to think of a word to explain how I felt. I felt FREE.There is no better way to describe it. And there is also no better feeling 

On another note, I get to bring my puppy home on Sunday, we decided on the name Apollo, but we are under the understanding that if my boyfriend can change it when we meet him. I am 100% positive I will post a million pictures of him when I get the chance on Sunday


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## dave13

I think this is a good idea.Communication is a good thing.

I had five setons put in a week ago and did the TB test and blood work yesterday before starting Remicade.I know this did not happen today,so why mention it in a 'today' post?

Today I am nauseous from the cipro,like every day since taking it.I guess you can say I have morning sickness. Today starts like every other day in other ways too.I have hope and determination.We'll see how long that lasts.

I suppose I could of made this shorter and said "I feel hopeful today".I physically(emotionally) feel like crap,but I will keep the faith and put up the good fight.

More importantly,I want to see pics of your Puppy! My dogs just came over and slobbered me,what timing.H,m,m,m...are they reading over my shoulder and saw I want to see your puppy pics? I love my beasties,they are so good to me and make dealing with EVERYTHING a little easier.


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## Lam123

What is dipping?


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## krika

I am fatigued today and its really bad. Will do my best and drag myself to the bathroom soon to take a bath and try to get out of the flat.
Nice to feel free, cant remember the last time I enjoyed such a feeling, good for you. Nice you are getting dogs, will be fun 

Have a nice day


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## jnette

Lam123 said:


> What is dipping?


 Love it. Obviously not from around "these parts". 

Dipping is "snuff" or other tobacco products you "dip" or "pinch" out of a little tin which guys (and yes, some older generation women still) stick in between their gum and cheek. "Smokeless Tobacco" if you will.


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## jnette

Feeling amazingly better since I started on Apriso only four days ago. Can it happen that quickly? Wow. No more gurgling and fireworks going off in my gut. Thinking at first maybe the Miralax was doing it (had never had to take any kind of laxative before in my life) until the past couple months. Insane. So now wondering if it's the Apriso or dc'ing the Miralax. Should get it figured out soon enough. 

Afidz… lovely to hear your were enjoying a pain free night. Hope there are more to come.:kiss:


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## Lam123

Lol! Ok, so chewing tobacco. 
I'm feeling not too bad today. I'm currently in a flare, but I think weekly humira has kicked in. Let's hope!


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## poopaholic

Today is a good day . I get my grandson today and we are going to see my grandmother. She isn't doing very well. So she will be happy to see us. As far as my health goes , I had my scope yesterday and got the best resuls in years. I do have some inflammation and hemorrhoids, which are bothering me today. But overall I feel great.


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## happy

Terrific! I have been doing a lot of purging of old files the last few days, so reading about how ill I was three to four years ago compared to how well I am now (despite some rather severe spinal issues the past six months) has reminded me how fortunate I am for my improved health. 

However, I am aware that many on the forum are currently struggling and I  remember when I was the one who was struggling how difficult it was to be hopeful every day for an improvement in my health.

May those who need it, find some way to feel hopeful today.


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## afidz

So many responses already, so I guess it wasn't a bad idea after all. I might change this into a support group kind of thing, but I am not sure yet. 
Dave13 - your avatar is of your dog I am assuming, what kind of dog do you have? We have a Border Collie/ Pitt Bull mix and a cat, and after tomorrow we will have an English Mastiff.


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## Jennifer

I'm feeling extremely fatigued today. Could be from my constant low blood pressure or could be nutrient related or something else or a combination of things. 

I need to go to the library today to print out directions to see my new GI/second opinion down in UCLA (going on the 24th this month). I plan on talking about what my GI had said to me, "do you feel you can live like this?" I don't think that's acceptable. There has to be a treatment out there that works for me and doesn't make me more sick than I was before. I don't want to trade one problem for another. I'll also be talking to them about becoming pregnant in the near future as my husband and I want to start a family after we move to Florida (hopefully we'll be moving this year). So I need to be healthy by then and I need a treatment plan during that time and before I decide to become pregnant. 

I'm also sore from taking care of my grandpa yesterday. I was doing physical therapy with him (just arm pulls that he does himself by lifting up his left arm with his right). He tried to kick me because he caused mild pain to himself while stretching his left shoulder. He doesn't understand that PT can hurt but it's important to learn your limits so you can start working past them to improve. It's frustrating and I hate being on edge waiting to get hit or kicked or bit when I get near him (he would be forced into a home if he did harm me). I always do my best to stay out of his reach but sometimes that's impossible. All of my joints hurt after caring for him. Could be another reason why I'm drained today but lately I'm always tired anyway.


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## afidz

jnette- I don't doubt that the apriso is already working, I felt a difference with Humira with in hours of starting it and slept like a baby that night. I'm glad you found something that worked! 
Krika- I know the feeling- I haven't left my house since Wednesday. I just want to sleep and bum around in my pajamas 
poopaholic- Great to hear about your scope! I hope you have a great day with your grandson! 
Happy- I think its important for everyone to think back to worse times, to remind them how far they have come, thanks for sharing that. 
Jennifer- Do you think you are in need of another resection? I hope not


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## Jennifer

My current GI mentioned balloon dilation as he believes I'm only dealing with scar tissue from my past surgery so I'll talk to her about that as well. It's possible I'll have to go back down there in case she wants to do a scope herself or maybe she'll just make a decision based off of imaging tests (even though the MRE I had didn't even show my my resection scar). All of my imaging tests seem to look perfectly fine yet I do have recurring partial obstruction symptoms which started a little over a year ago after I was hospitalized for an obstruction.


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## poopaholic

Afidz, I wish I could post pictures of my dog Igor. He is a English Bulldog .His full name is Igor Runt Monster and believe me he lives up to his name. My computer is broken and I am using my phone only.I tried to post pictures but I need to resize them I guess.  Don't really know I am not the most computer savey person anyway.


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## valleysangel92

Adfiz - so great to hear you got some relief from the pain, hoping this has meant you got some well deserved rest too? Can't wait to see pictures of your new puppy, he sounds like he is such a cutie!  

Jennifer - sorry you're still in so much pain and possibly heading towards surgery again, I hope that you get some answers from your second opinion that will help you feel better soon. I'm also sorry to hear that things are still hard with your grandpa, you've done so much for your family, you're an amazing person. 

Myself,  I'm exhausted. I went shopping with my parents today and we took my grandmother, took about two hours to get around the store. I've been really tired lately and some days have really struggled, I feel like I've been back at square one. It's only been just over a year from my surgery, but I was never given maintenance medication, so crohns is back to bite me. I'm starting to feel more optimistic now though, although today tired me out, it wasn't as much as a struggle as it would of been a few days ago and I feel confident in my new IBD team. They are so much better than the one I used to have, and I feel confident that this time around, I will get on top of this,  I will get the treatment I need and deserve and I won't let it beat me.


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## Lam123

How come you weren't given maitenance meds?


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## poopaholic

Afidz, I was able to change my profile pic. Thought I would show you what I have to step over every time I get up. For a bulldog he is rather large . He is about 75lbs.


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## valleysangel92

Because the consultant I was previously under was clearly clueless. He usually treats liver patients and went as far as to tell me that my crohns 'would never come back ' so I didn't get meds. In fairness to him, when I was really sick when I was diagnosed he really helped me, but after my surgery he seemed to think I was cured, and became rather less helpful. I just don't think he knew enough about IBD. My pathology from surgery wasn't 'crohns typical ' but the lab said they could not rule it out, and the top UK specialist said that there was most likely crohns there, just the appearance had changed due to steroids and previous anti inflammatory drug use (due to joint pain as a young teen, before any tummy trouble) . That consultant was basically just there to keep an eye on me. The IBD specialist that was supposed to see me only sees me once a year and never remembers me so it's really hard to get consistent treatment. 

At the end of June my GP sent me into hospital because she wasn't happy with the way things were going, as I was developing a dangerously high heart rate (144). When I was in there I was under a different team,  who are 100% better, and I am now staying under their care, and getting scoped in the near future to see how bad things are inside.


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## KayleighMeek

I have felt like posting on the forum for a while but haven't been able to have the courage to do so. I am struggling at the moment I feel stuck and don't know what to do. I am currently on cimzia but not doing all that well. Don't get me wrong I am no where near as bad as I was but I still don't feel right. I am really feeling surgery is the next step for me but as me and my partner are trying for a child at the moment I am just hanging in there and hoping that it happens sooner rather than later. Mentally I am not feeling well but I don't know what can help me. My thoughts are sometimes confused and make me feel like I can't breathe through it all. I can't even count the amount of times I have written something on the forum just to delete it all.
Sorry this is so muddled I really can't get my thought straight


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## Ali29

I'm not feeling great today.  Nausea/pain again!!  My hubby has gone to see his dad who was put in hospice (which is only being done 1/2 way) on Friday so this could go on for awhile.  I have felt really bad as he has had to make the 5 hour trip all by himself every couple of weeks since March as I'm not up to making the trip with being so sick.  I feel really bad for him but he has 3 younger sibblings that still live there.  Mentally this is bringing me down - he and his family understand my situation and are supportive but I hate that I'm not there as a shoulder for him to cry on.  When he comes home, he finally lets it go - it's so hard!!  I try and not show how bad I feel because he is getting ready to lose his father.

Today I just feel like crying.  I hate days like this!!!


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## dave13

Maybe this story will bring a smile,humor for feeling better...

I went into town to run an errand.Outside the store,near where I parked,a mason was doing stonework.While I checked out the wall he was building he noticed my t-shirt.It had a brook,rainbow and brown trout on it.He said he loves trout fishing and wanted to buy my shirt.I figured he was kidding.He took a twenty out of his wallet.He gave me the twenty and I gave him my t-shirt.I had a sweatshirt with me in the car to put on.

That was a first for me.I think I paid 5 dollars for it,like ten years ago.Interesting way to start the day.


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## RowdyRowdy

I just went over my notebook journals from over the past six months. And I had no idea I was that sick until I read through them and was reminded. I went through hell and back! It's like my brain has an eraser as a defensive mechanism or something. Anyway, all that to say, we Crohnies are tougher than we might get credit for. As it's been said, "If God never gives us more than we can handle, I must be a bad ass"!


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## Lam123

I'm so glad to hear you are under better care! 

Rowdy, you are right, we are definitely bad ass and put up with a lot. I consider myself a very strong person, even if I can only handle things one day at a time.


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## afidz

:HUG: Kayleigh, have you thought about going to therapy or finding a local support group? It sounds like you really need to talk things out, pm me if you want, I'm always available to talk :hug: 

Well, its 4 am now. I am nauseous and constipated, and I don't think bedtime is anywhere in sight. I was talking to another member online a few days ago, and I think I have come to the conclusion that I am afraid to sleep. Sleeping is by far the most painful activity of my day. Why fall asleep just to wake up screaming and crying? I am going to the GI on Tuesday, I am going to ask him about a whole mess of things, the insomnia being a big topic. Hope everyone has a good day!


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## dave13

afidz said:


> Dave13 - your avatar is of your dog I am assuming, what kind of dog do you have? We have a Border Collie/ Pitt Bull mix and a cat, and after tomorrow we will have an English Mastiff.


My avatar is Dobby.She is a German Shepherd and my biggest supporter.She is a petite 85 lbs.Her 'brother' Bruce helps a me a bunch too.Bruce is 2.5 years old,a rottweiler/shepherd cross.He is a 141 lb.goober.He is the friendliest dog you can meet.I get asked often if he is part Mastiff.He has the bulk of a rotti and the height and length of a shepherd.Amazingly graceful for such a big dog(most of the time).

They are both rescue dogs.They couldn't be bonded more than if they were litter mates.

I can go on and on about dogs...I'll stop before I really get going.


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## LodgeLady

Glad to hear some are having good days! Had a painful nauseas day yesterday and last night. Still continuing today. I really don't want to go to the ER and get IV Pred cause I know that's what will happen. Trying to wait it out.....


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## Ann Morgan

Today I am feeling depressed. I have many physical disabilities, including the Ulcerative Colitis. I was diagnosed in 2006 but have had diarrhea since 1997. Why does it take doctors so long to figure things out !  Anyhow, I have had diarrhea since 1997 and then three months ago I started to have severe constipation. Until I got on this website I did not even know that constipation was also a symptom of Ulcerative Colitis !  I guess I have to learn more about my disease. I have had 2 colonoscopies over the past 8 years. I have been on Asacol and now I am taking Lialda each day. I find that I am fatigued and tired and exhausted all of the time. I have other physical disabilities also, too many to list on this post. I see that many folks on this website have been taking a lot of strong drugs to help control their disease and they have had surgeries too. I have not had to tackle those issues at this time. I am new to this website, I am still trying to figure out how to maneuver around to the different forums.


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## KayleighMeek

Thanks afidz and sending hugs to you too. I have been to a support group for chronic illness before but I was the youngest there, it would have been nice to be with people around my age and maybe with similar issues. Also as I introduced myself some dick (sorry about the language but it still makes me angry now) interrupted me with the usual ' I know someone with that and they did this and now they're fine'. It's one of those moments I wish I could go back in time and tell him what I really think but at that point I just froze out of shock. I have tried therapy before when I was in college and the person I saw wasn't that great. I get nervous and over analyse everything that I say so I just shut off everyone and everything and get stuck in a bit of a rut emotionally. Thank you and everyone on this forum for the support it really means so much and has helped me process more of my thoughts and what I can do next. 
Anyway I have waffled on enough so I will leave it there for now. X


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## Grumpy1

Today is not a good day.  Am waiting for my Gastroenterologist to call me and let me know when I can get in to see him.  On Friday my family doctor told me that he didn't think I was going to be able to take Humira either.  Am a little concerned as my specialist told me that was pretty much the last hurrah unless a study drug came along - so while I'm in full flare (for the past 2.5 years) there's no other drugs to treat me?  Really - WTH is that (excuse the language).  Imuran caused pancreatitis and my gall bladder to become infected and inflamed, Remicade caused serum sickness and my family doctor thinks the Humira is doing the same thing.  I suddenly have arthritis that I didn't have before and am not sure what to do about that either - grumpy, grumpy, grumpy.....

Grumpy1 is really just because I like the dwarf from sleeping beauty but today I give new meaning to the name.


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## RowdyRowdy

Yeah, def peaks and valleys with Crohn's. What helps me in the valleys is knowing they won't last forever. #hope.


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## scooby2651

Today I feel exhausted and its only 10.20 am. Keep running to the toilet. Think the Crohns is coming out of remission. My hip and other joints are hurting, feel like my weight is dropping too.

The two dogs in my avatar are Jen & Alfie, both rescue dogs. They look after me when my partner is at work.
I think this support group is a really good idea. I was struggling today before partner went to work, but when he asked me if I was alright, I said I'm fine. Dont like to keep moaning. But here people understand better x


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## emmaaaargh

This thread is such a great idea!  Today I'm feeling kind of frustrated. I saw my GI yesterday and all seemed okay there. Platelets down, haemoglobin in range (finally), but my CRP was up. We agreed that if it was still up by the time of my next appointment, we'd move on to 100mg of azathioprine - which I'm fine with. Also, my vitamin D level is 20, so I'm now supposed to be taking 1200mg a day instead of 200mg. 

But it's just that I'm kind of stalling when it comes to filling my prescription because we've had SUCH an argument with the pharmacy lately! I'm on 75mg azathioprine and for some reason my prescription fell out of sync - so I could order more 50mg, but not any more 25mg. I thought it'd been fixed - my dad rang the GP and they were really lovely, admitted they'd messed up, promised to fix it - but then we went to the pharmacy again and they only gave us 28 tablets of the 25mg. I'm supposed to have 100! I ran out the day before yesterday and haven't been able to get to the pharmacy yet, and I'm so tired of their not ordering the right medications when they're supposed to. With any luck they won't end up having to do all this for my 'new' vitamin D. 

I've waffled on long enough - I'll leave it there for now. Just had to get it all out! :tongue:


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## afidz

I feel...discouraged today. 
I went to my GI, basically it came down to "there is nothing else I can do for you until the hernia is fixed". He isn't sure if my symptoms are because of Crohn's or the hernia, and since he can't scope me, there isn't really a way to tell. He did however order an xray of both of my hips to look at the sacro illiac joints. He said that sometimes Crohn's can effect those joints, (as well as AS) so he wants to see if they are damaged. I am eager to get those results back because I really want to start figuring out my back pain.


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## afidz

I'm glad everyone likes this support group! I feel like, even if I dont get a response back, I was still able to get it out. I also like reading everyone's posts. Reminds me that we are all in this together. I hope everyone has a better day tomorrow :ghug:


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## PE91

Today I am depressed, all the possibilities of getting to move out onto my own are all crumbling apart. My eyes are hurting and look like a vampire or zombie. My face hurts and is so puss filed it looks like its going to pop. Yesterday my family and I joked why I couldn't get a job. Well welcome to SubWay do you seriously want me making you food. I look like I'm gonna start the apocalypse. Walmart check out "costumer starts thinking maybe I should start prepping for doomsday". Anyway I can no longer live at home. My stomach hurts and keeps growling and digesting I hate that feeling. I am on heavy antibiotics to try and help my face. And I have an appointment at ophthalmology at JPS on monday to see about fixing my eyes. I feel so stuck in place and can't move. I hope I get some positive news in a few days from some attorneys.

Take care all.


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## RowdyRowdy

My ileostomy bag leaks at the worst times. It's like it waits until I'm in a very important meeting then decides to come unglued. Now, even when it's not leaking, my mind feels as though it is. Today, I told God I thought it'd be better if I was never born. (See: Book of Job, :/ ).  Anyway, I'm certain this will pass. But until then, hmmmm....


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## afidz

PE91- iritis and uvetis are common with people with IBD, so thats possible thats what is bothering your eyes. They are the same thing, the only difference is what part of your eye is inflammed. Its important to get it treated asap as inflammation causes scar tissue, and in an eye, is impossible to get rid of. I had a couple month flare last year, I was on steroid drops and a dilator for a while to clear it. Eventually, it went away but it can come back at any time.


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## Cosmojo

Today I feel alone, I made my boyfriend stop what we were doing and go back home cause I'm just in so much pain. He is usually very understanding but today was a hard day for him too I guess. I am constantly in the bathroom and I'm at that phase in my disease that I've had no energy to keep up on my friendships so I feel like I have no one to go to.
I have a GI tomorrow which makes me hopefully, but we all know 1 appointment doesn't change much its just the start. 
This is going to sound selfish but I just want to be taken care of and have someone help me out but my work is really competitive so I can't show weakness. Its lonely.


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## Grumpy1

Sad today, have to go back on prednisone.  Crohn's out of  control.  Will gain more weight yay me!  Have to see a Rhumotologist for the arthritis.  Maybe able to try Humira again once I get my immune system to stop being so miserable.  But tomorrow is another day and it will be better - right?


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## Lam123

I'm in the same boat. Going through a flare, on prednisone, trying humira weekly, have to see a rheumatology dr, knees aren't great, keep getting inflamed.


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## Grumpy1

Lam123 said:


> I'm in the same boat. Going through a flare, on prednisone, trying humira weekly, have to see a rheumatology dr, knees aren't great, keep getting inflamed.


Humira caused what they think was serum sickness or could be just because I have a really nasty immune system that isn't allowing me to take anything.  I have always had issues with taking prescription drugs big time allergies and now is worse.  I hope that things get better for you soon!


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## Lam123

My crohns symptoms have improved, just the knees. Might have to try methotrexate aswell. Have u ever taken it!


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## Grumpy1

No, started with prednisone, then Imuran which caused me to have pancreatitis and my gall bladder to become inflamed, then we tried Remicade which caused serum sickness and then Humira - now back to prednisone.


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## Lam123

Oh ok. I'm on humira and Imuran now, but I think the Imuran isn't doing anything. Not sure. I go see my dr Aug 18, have to get bloodwork done soon. This is definitely a much different flare then what I'm used to. 
Where is ur arthritis?


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## Grumpy1

Ankles, knees, one hip and one wrist lower back - its ugly - I walk at least 3 miles a day and I'm not used to being unable to get up a go but my get up and go got up and went.  Where is yours?


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## Lam123

My knees and back. Knees are worse, they keep feeling swollen and liquid on them. I would like to get back to the gym, but not sure what exercises would not bother my knees.


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## Grumpy1

Swimming is supposed to be good.  Not sure about anything else - but if you ask somebody here will have the answers.


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## Lam123

I think I would be able to handle the bike, because I am sitting. Not sure. I hope to be able to go for walks soon.


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## Lam123

Feel better soon!


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## valleysangel92

I had a nice day today, my boyfriend came to see me and we got coffee and lunch and then went to the cinema and then came back to my house to watch films and eat etc. It was the first real outing I've had since my hospital stay at the end of last month, and it went pretty well. 

I'm suffering for it now though, it's 3 am and everyone is asleep but me ( mum dad and boyfriend) . My tummy feels like it's got a knife in it. I've had paracetamol (Tylenol)  and tramadol and buscopan and I've got a heat pad on,  but nothing is making much difference. My tummy is pretty bloated too. Living in a small village makes things a lot more effort, it takes me 45 mins on a bus to get my boyfriend from the train station, then another 20-30 min bus to the nearest cinema, and then the same the way back to my house, and I live half way up a mountain, so have to use steep steps to get to and from the bus stop. I feel I'd be able to get out so much more if I lived somewhere flatter or with more around. Here it's basically walk in the mountains or go to the small pub/ hotel, otherwise you have to get a bus somewhere. Which is fine if you have the money and strength. But I don't have much of either right now. I feel like I'm 3 x my age. 

But,  I did have a good day, and it was nice that me and my boyfriend got to be a couple and have a date and not just sit at home,  we don't get to do that sort of thing very often, partly because we live 50 miles apart, partly because I'm so sick again right now and partly because of the amineties around me. So all in all I'm in a lot of pain and very tired. But mentally good.


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## dave13

I had my post-op visit this week for my fistulotomy and setons.Dr. said they were doing well.I thought I had five setons,but found out he put in three.That's good news.

I start remicade in five days.I'm not looking forward to it.

I did go for a motorcycle ride for the first time since having setons.I was a bit tender from the surgery still,but it was a fun ride.


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## lenny

Today was a pretty good day for my son.  He had a decent amound of energy and he didn't have pain in the bathroom.

Which would be fine if I were talking about my grandfather, but I am talking about a 17 year old.  yippy.


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## Gram214

Just jumping on here to add my small bit of advise. I see some of you do keep journals..I find this tremendously helpful. Been doing it for about 10 years ..not always faithfully.. sometimes I get lazy . But always come back. We can go back and read how sick we were  ..how hopeless we felt each and every time this monster decides to visit. Especially when it completely ruins holidays time after time. We can see all the meds. we tried and how long they took to help ..or not. They say the sun always comes out after the storm. Some storms are sure dilly's though aren't they ! We're all a bunch of "Storm Troopers" I'd say ! Pun intended... Ha Ha


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## Lam123

Hi everyone! I am feeling great today! Been going through a flare since April, today is the first day I am feeling well enough to go to the gym. Felt great. Exercise always helps me in so many ways. Not sure how I will feel tomorrow, but today has been a great day. I also started juicing again today.


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## afidz

Worry about tomorrow tomorrow, thats all we can do. 
I feel awful today. Between Crohn's, my period, and the hernia, I just want to hide under the covers with all my pets around me. My lower back/ right hip have been killing me at night, and I have a puppy that thinks its fun to get up early so needless to say I am not getting much sleep. But good news, I finally was able to make an appointment with a rheumy (still have to wait for 6 weeks). Around the same time as the rheumy, I am going to a weight loss clinic that my GI approved. I am hoping to loose the weight I need to be able to go forward with surgery. The rest of the year is going to be very challenging to say the least, but I feel like 2014 is the year that I finally get my health in line.


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## Lam123

What weight loss clinic are you going to?


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## Gram214

Hi all..must be hip pain season. My R one has been horrid now for over a week. Just had my Remi and even started a round of prednisone. My tummy is misbehaving as well seems like it doesn't want to conform to the regimine. I have a call in to my GI. Iam not seeing a Reumy at the time. Have in the past and found my GP is just as thorugh and can do as much for me at half the price and no 6 month waiting list.
  Always something ...don't you just love how if one thing is feeling good another won't be ?


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## Grumpy1

Hi all; Feeling better today - prednisone is kicking in.  I see my reumy in November but have booked myself a vacation to Oregon in October so am looking forward to it.  Now if I can just convince my body to behave.....  I hope that everyone feels better soon!


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## Ali29

Bad tummy Sunday through today - cramping, diarrhea, nausea, and of course pain (all worse than normal).  

It was been a rough week, my father in law passed away Wednesday after a long battle with liver cancer.  My daughter drove us to San Antonio for the funeral (hubby had been there about a week because I haven't been able to travel  & he has had to be there many times since January without me - which he and his family totally understood).  I took all my meds to the best that I could (and didn't eat near drive time) so we could make the trip without an accident in the car - many stops there and back but we made it (much longer journey).  Thank the Lord I was able to be there.  

I think the stress of the death and funeral made my symptoms twice as bad when we returned home.  Trying to de-stress as much as I can right now.


----------



## valleysangel92

I'm frustrated today. I thought I was starting to pick up,  but apparently that's not happening, I've been in agony all day with my stomach,  and now to top it off my friends are kind of annoying me. 

About 2 weeks ago we tried to organise a meet up,  but we couldn't find a day we could all do easily,  so,  my one friend (C)  and me decided on tomorrow. After that not much had been said,  so I tried texting my other friend (M)  on Wednesday to see what was happening and she hasn't text back. C text me today asking if I'm still up for it and if so could I see if m is as she's not answering his texts and he has tried calling too, so now I've text her again. I'm so fed up of this, this kind of thing is what happens every time we try to organise something, and while when I was well it was a minor inconvenience it's now a problem. C has been up in North Wales, 4 hours from home and we've not really talked much, but M knows I've recently been very sick and been in the hospital, but she still messes me around and can't give straight answers or even respond to texts. Now I've known this girl since we were infants, she's my best friend and honestly we get on really really well,  there's no better friend when your actually speaking to her,  but she is really hard to track down and very disorganised. 

I know that as normal 21 year olds they can just do what they want when they want. But I only found out today that a time had been set,  3 pm,  which means I'll have to plan my medications etc around that,  and make sure I'm up at a certain time to eat breakfast so I can have my meds and still feel at least a little hungry for dinner at 3 - 3. 30. None of this will have entered their heads,  and honestly I know they have no idea how sick I actually am. What frustrates me is that if someone had told me sooner I could of asked if we could go later, or at least had more time to plan. I now have to work out what I'm wearing and eating and doing about meds and get it all sorted tonight and in the morning, and I currently function at snail speed, so that's gonna be fun. 

I haven't seen these two in ages because of them both being away at uni, but I think they'll both have a shock when they see me tomorrow. Moon face,  snow white completion + weightloss. M is gonna freak.


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## Ali29

Sorry about your day!  Others don't realize how much we have to plan - eating/med, etc just to go out of the house.

Hope your day gets better!!


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## dave13

I have to get up several hours before I can leave the house.I now have to get use to setons in my daily routine.(I'm trying very hard to omit the pain in the ass jokes). I feel going to the local store is an expedition that needs exhaustive planning,never mind out-GASP!-to meet someone in a social setting.

valleysangel92-I hope you enjoyed yourself with M


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## sarahh5397

I'm having such a horrible weekend things are never "good" but they have been worse this weekend. Just feeling terrible I've heard a lot of you loose your appitite but I've never had that problem until this weekend and its a little more suprising because ive been on prednisone for a few months and that increases it. I'm just miserable having lots of extra pain today and its making me feel depresed  I just want some relief and I swear half of this disease is playing the waiting game with doctors appointments and scheduling then waiting to hear results I'm currently waiting to schedule a video capsule the fake one wouldnt go past my stomach so they want to place it endoscopic and I'm so worried about it getting stuck. just a terrible day over all.


----------



## Ann Morgan

sarahh: I understand your depression and sadness. Today I had a 45 minute crying jag. I also suffer from anxiety and having Ulcerative Colitis gives me more anxiety because of the unknowns. I just got a new Gastroenterologist and I am having a colonoscopy later this month. Also, I have had two rectal abscesses in the past and I am constantly worried that I may get more. I had diarrhea for 17 years and now for the past three months I have had severe constipation, so I am wondering WHAT is going on with THAT !  The best thing to do is to Live In The Moment. We cannot change the past. And we cannot know what tomorrow may bring. Please keep in touch and keep us updated on your procedure.


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## sarahh5397

Thanks! I just dont ussually get this depressed I'm all about taking it day by day. I honestly can't get myself to look at the life long picture that I will be dealing with it my whole life. I obviously know that is the truth but it honestly hasn't regestered with me yet and I'm scared when it does it may send me into some serious depression. Its kinda nice to know I'm not the only one who has random crying moments. I already feel the support of this community its nice to be able to get things off my chest and not have to constantly complain to my boyfriend who is already more supportive then I can even believe. I can say there are some good things I have going for me like having such a great man in my life those are the little things that keep me going at times like this! Thanks for your reply I really hope you get good results from your colonoscopy and figure out whats causeing your constipation. I can honestly say it feels worse the few times I've gotten constipated since all this so I hope they figure it out!


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## dave13

sarahh5397 said:


> I just want some relief and I swear half of this disease is playing the waiting game with doctors appointments and scheduling then waiting to hear results I'm currently waiting to schedule a video capsule the fake one wouldnt go past my stomach so they want to place it endoscopic and I'm so worried about it getting stuck. just a terrible day over all.


I admit the 'hurry up and wait' we have to do is hard for me to deal with at times.I let it create anxiety and that leads to stress and..you all know the rest of the story.

I try to be positive,realistic,but positive.I feel I try so hard to be positive and proactive that when I 'hit the wall' I plummet into lows equal to my highs.I feel so manic emotionally.

I'm trying to establish my routine again.I'm happy to be done with the Cipro and Flagyl.I'm pleased to get back to my SCD and see how that and the Remicade work together.

Getting back to work has been a little slower than I thought it would be.I get exhausted easily still.My employer has been great to me regarding transitioning back to work.I managed to have my hours reduced for when I get back full time.I've been wanting to do that for a while,good mental health wise.Not so good $$ wise,but...better health = less $$ spent,or so I tell myself.

Good luck to all!!


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## sarahh5397

Today I feel better emotionally but woke up in extreme physical pain we don't have my inflamation under control and I'm just worring myself when any strong new symptoms pop up do you guys rush to the doctor or wait it out? I'm more of the wait and see if it gets better type but with crohn's I'm not sure its such a good idea advice?


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## afidz

Kind of down today. Maybe I shouldn't of watched that sad movie. IDK. I just don't know how I am supposed to go the rest of my life feeling the pain that I do 24/7. I started thinking about things, and my mood and mental state when down hill quickly. How many of my future kids activities am I going to miss? How old are they going to be when they start to realize they can't count on me? What if I pass all of this onto them? I really should live in the moment and worry about today, it just really has me down today


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## Lam123

Afidz, I think we all have those days. Having my son has made me realize that I need to really enjoy the good days, but on the bad days, like u, I start to think if I will be well enough to see him get married. I just try to remind myself to only take things one day at a time, that's all I can handle.


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## Arkansas Crohny

Lam123 said:


> My crohns symptoms have improved, just the knees. Might have to try methotrexate aswell. Have u ever taken it!


I have knee pain with crohns doing better also ! GI Dr is going to give new meds with remicade infusion in two weeks ! Hate your having knee pain hope you can get relief because I know how bad that can be !


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## Lam123

I find knee problems more bothersome then the actual crohns


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## Arkansas Crohny

Lam123 said:


> I find knee problems more bothersome then the actual crohns


I do to at this time . My orthopedic Dr was wanting to do a knee replacement based on an X-ray . I said I will wait and talk to my GI . I've been working with a rheumatologist for 4 years tried a lot of different meds that causes something else . I'm beginning to think the pain is caused by remicade ! Thanks for listening !


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## Lam123

Do you get swelling? I get a swelling and fluid feeling


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## Arkansas Crohny

Lam123 said:


> Do you get swelling? I get a swelling and fluid feeling


Yes and both real sore when I move them, going down stairs is worse than going up. My legs swell from knees to ankles. For almost 4 weeks after my infusion they hurt really bad !


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## Ann Morgan

I am new to this site.  I have learned more from this site about my Ulcerative Colitis than I have since I was officially diagnosed in 2006 ( but have had diarrhea since 1997). My question is this : Is arthritis and joint disease directly related to my UC ?  I currently have arthritis in my neck ( I am seeing a new Rheumatologist this week ). I have arthritis in my hips ( I am not currently seeing any doctor for this ). And I have joint disease in my left shoulder ( I am seeing a new Ortho doctor next week about my left shoulder and my right shoulder pain too ).  They must all have something in common with the UC because as soon as I started to get my severe constipation three months ago, I then started having some really bad arthritis and joint pain.  I cannot move my neck and I cannot lift my arms up at the shoulders.  Well, that is all for now.


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## neohic

Today I feel like less of a pile of garbage that I've felt like for the past week... Which is a big step in the right direction.


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## evaj

Hello everyone. So refreshing to know I am not the only one out there who has a lot of different feelings on a daily basis. My family and friends are supportive but they just don't get it sometimes. Crohns is not just in my gut...its also in my head. Most days I mosey through but there are far too many that I don't  want or can't get out of bed either from pain or depression. I do very little things that I use to enjoy. 
Sometimes I think even my gi doctor doesn't get it. However he does try to keep me upbeat by telling me new things are on the horizon for helping crohns patients.  I pray this is true.
Nice to vent. Feels good. But I will stop now lol


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## Ann Morgan

I really liked the Gastroenterologist that I have been seeing the past eight years. He was very good at his job. Well, he is not covered on my new health insurance plan. So, I now have a new Gastroenterologist as of July 30th. I am scheduled for a colonoscopy on August 21st and I am nervous. I don't know this doctor very well at all ( you know how doctors only talk to you for 10 minutes and then they are on to the next patient ! ). I did not even like his Medical Assistant. Maybe I am judging them both too quickly ?  I have had a colonoscopy before, so I know how they work, but this doctor actually does the colonoscopy at his doctors office location. My old doctor did his colonoscopy at a Surgicenter type place ( that was right across from a hospital ).  I suffer from anxiety, so I am getting myself worked up ( as usual ).  I NEED to have the colonoscopy because I have had some major changes in my bowel movements the past three months, so I guess 
the colonoscopy is something I cannot do anything about....I have to have it. That's all for now.


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## evaj

Hi Ann,
I just want to let you know you might want to check with your new GI to see if tbey are going to sedate you or not and how much. Sometimes if procedure done in doctors office they don't sedate well and can be painful. In endoscopic centers and surgery centers they sedate you much better. I have had many many colonoscopies and endoscopies...sedation best way to go...at least for me. Good luck.


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## Ann Morgan

I was told that I would not be awake during the procedure. But I think that tomorrow it would not hurt to call their office to verify that. I already checked with my health insurance today and they said that they would pay 100 percent for the colonoscopy and I would have a co-pay on any lab work. They said they did not pay for the Anesthesiologist, which I thought was strange. I wanted to know how much the Anesthesiologist cost for the procedure, so I called my doctors office.  The gal gave me the phone number to the Anesthesiologist to ask them what their fee was. For my last colonoscopy at the Surgicenter I actually told them that I suffered from a lot of anxiety and so they gave me a little extra medication to make sure I would be totally sedated for the procedure. I was happy that they listened to me and took me seriously. I did not wake up and the procedure went well. PS : I have had an endoscopy too.


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## evaj

good to hear that you will be sedated. I would double check if I were you too. I seen/heard of folks getting colonoscopies in the doctors office. They were given something to relax them but not sedate and it was very uncomfortable or painful.  I hated witnessing witness it especially in a young teenage girl. So when I hear of people getting procedure in office I try to give them a heads up. I know some offices are able to sedate, which is good. Just double check. Doesn't cost anything, right? I wish you well.


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## Honey7

Hi all

Today I am feeling very confused. I have been in a flare since January my symptoms are usually pretty much the same as every other flare I have had except this is the first time I have suffered with a very sore mouth and tongue. This past week I have less pain in my abdomen my D hasn't been as bad so I was hoping I was finally on the mend. The problem is even though some of my symptoms seem better my sore mouth is getting worse and I am now suffering with dizziness I feel very light headed most of the time which makes me feel nauseous. I just wondered if anyone has any ideas about what is going on with me. I feel so frustrated and down as every time I feel a bit better I seem to get something else wrong.

Sorry for moaning I just needed to tell someone how I am feeling.


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## valleysangel92

I'm feeling like I've hit a brick wall at the moment.

I've been in increasing pain since last Friday. Tapering the steroids clearly isn't agreeing with me. I'm now on 15 mg and dreading going down to 10 next week. I've tried three days in a row to get in with my GP,  I've been told there are no advance book appointments so been calling in the mornings. The lines open at 8,  I got through at 8.15 today and was told they had no appointments in either of the two practices they have. I've not heard anything about my scope yet, so I have no idea when that will be. In the mean time I don't know what to do. I'd call my nurse but I don't see what they would say apart from going back up the steroids. I'm also taking pentasa but it seems to be doing nothing for me. I don't see my consultant until the 26 th august. It seems highly unlikely that I will of had my scope by then, so I don't know if we will actually be able to move forward. So I'm currently at a dead end. I'm barely sleeping and I have my health assessment for university next week, 2 days after I drop to 10 mg of Pred. I honestly don't think I have much chance of passing if I don't improve before then. I love the nhs, but the waiting around drives me crazy.


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## Ann Morgan

dear evaj: I was concerned about my anesthesia for my colonoscopy that will take place at my doctors office on August 21st, so today I actually called the Anesthesiologist and talked to him !  I suffer from anxiety and so before I got the procedure I wanted to get some straight answers about the drug that I would be given by him and if I was going to be totally sedated for the procedure. He assured me I would be totally sedated and that the drug I would be given is PROPOFOL.  Has anyone else been given propofol before and what has their experience been ? I have a totally new Gastroenterologist this year. I don't know what I am all worked up about, since I have had two colonoscopy procedures in the past, but they were by a different doctor and they were done at a Surgicenter, not a doctors office. My Insurance Company said yesterday that the Anesthesia was not covered. But today the Anesthesiologist told me that it would be covered. Anyhow, it doesn't hurt to do a little research before you have a procedure done because Anesthesia CAN be dangerous. The reason for my colonoscopy is because I have been severely constipated for three months and before that I had diarrhea for 17 years. Thanks for listening.


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## poopaholic

Propofol is what I always get when I get my scopes done . That is the drug that killed Michael Jackson, but remember he was using it unsupervised . It is a very good drug when administered properly. I never remember anything .


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## Ann Morgan

dear poopaholic: Thanks for your quick reply !  PS : I love that dog photo !


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## poopaholic

That's my buddy Igor. He is very lazy. That works well for me.


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## Grumpy1

Today I'm feeling confused and worried.  I just got tested for Lupus (yay me), and a variety of other autoimmune diseases.  The issue seems to be that I have a nasty immune system that keeps reacting to the medications for Crohn's.  I have to go see an allergist on an emergency appt. this week and am slated for a rheumatologist in November - it just keeps getting better.  Depending on the Allergist I have to go on methotrexate so that I can take the humira - not pretty and not having fun yet.


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## poopaholic

Humira gave me lupus, Drug induced lupus. I stopped the humira and the lupus went away along with the rhumatory arthritis . Thank goodness life was getting hard to deal with there for awhile.


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## afidz

I have had a pretty crummy week. Two nights ago I woke up with nausea and moderate body pains that kept me up for 3.5 hours. I have been continuously nauseous since then. I found out that I might not be able to stay on Humira thanks to my insurance company (long story short). This has put me in an awful mood. I just started feeling somewhat normal. I have been leaving the house, and sleeping through the night and not napping during the day. And then my insurance company just rips that right out from under me because they would be shorted 240 dollars every month. Needless to say, I have cried a lot in the last few days. Its so hard to be sick.


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## Cosmojo

Today I found out along with a big active flare with a possible need for surgery I have a non-infectious bronchitis, basically meaning an unexplained cough that won't go away- coughed up blood a few days ago. Have a chest x-ray tomorrow.
I also have a kidney infection which happens when I get flares, they are running labs to see if it has lead all the way to kidney disease. 
Had a bone density test today and had to go get my Hep-A vaccine because I got it a long time ago but blood work shows I'm no longer immune.
Oh yea and I'm in the middle of a huge project for my work....

Basically when it rains, it pours.


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## valleysangel92

I don't even know how to describe how I feel right now. I've had a pretty bad week symptom wise. And today I had my assessment to see if I was allowed to go to university. The doctor wasn't happy and I failed,  they will be advising my university that I am not fit to do the course. I have now lost 3 university attempts to this disease. I don't know what to do next now. Bummed.


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## Lam123

Oh darn! Valleysangel, is there any other schooling you could attend? College? Maybe part time?
My week has been ok. I was feelin good today, had a salad at lunch and now regret it. Not sure why I do that, I know raw vegetables don't agree with me. Ugh! When will I learn?


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## valleysangel92

Not for what I wanted to do its full time or nothing, I was going to be doing a nursing degree at university. My only other option is college, but I already have a college level qualification so it's not really progressing. Might be my only way of getting a decent job though.


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## Lam123

When I was goin through school it took me longer to get through it due to crohns aswell. It's not fun.


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## BlackButterflies

I have felt a wide range of things today - exhausted and frustrated because I was too dizzy to get up and drive to work.  Then I was angry for a bit that I slept all damned day again and did nothing (the cat was quite happy I have to say).  Then I walked my dizzy self to the walk in a few blocks away to get put back on pred from all of the bleeding again and felt sad.  Now I am feeling hopeful again and happy that I did that walk and washed some dishes.  Heh.  Lets hope the last one is what stays.  Going to take it easy the rest of the night watching tele.  My goal is to make it in to work tomorrow, even if only for a half day.


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## Ann Morgan

Today I am feeling anxious. I have a new GI doctor and he is performing my colonoscopy tomorrow. My previous GI doctor did his procedures at a SurgiCenter. My new doctor does his procedures right there in his building. I was so worried about the Anesthesia that I actually called the Anesthesiologist to ask him questions about what medication he was going to give me during the colonoscopy. I have the colonoscopy on 8/21. I start the PREP for the procedure in 42 minutes. It is called MoviPrep. I hate the prep more than the procedure ?  I take another prep package in the morning before the procedure. I have been having apple juice and lemon/lime jello since 6pm last night ( fun ). Well, that is how I feel today. I hope my procedure goes well.


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## evaj

Hi Ann,
I am glad you researched the medication they are going to use on you. I have had the medication and did not experience any negative side effects.  Also seems like I had something else as well...but I forgot the  with name! Lol
I am sure you will be fine tomorrow.  I pray they find out what is going on with you and are able to fix it!  I will be thinking of you.! 
That prep is the pits! !!! Lol I hate it. Be good to yourself. Keep us posted.


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## dave13

Hi Ann,I hope it went well.Did they find anything?


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## RowdyRowdy

Hang in there everybody. Hope stands for: Hold On Pain Ends.


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## Ann Morgan

My prep liquid for my colonoscopy was not as bad as I thought. My colonoscopy was on 8/21 and it went better than I expected. The staff and doctors were all very nice to me and that helped put me at ease. I did not suffer any side effects from the medication. I did not have any problems from the procedure after I went home. A gal from the doctors office called me the following day to see how I was feeling. The doctor did take a biopsy. It takes maybe 10 days to hear back from the lab on the results. I suffer from anxiety so I have a tendency to worry about everything. 

All that worry was for nothing. I think I get scared because I am all alone and I don't have any family or friends. My sister lives out of state. I just have to learn how to calm myself down when things in my life get very emotional for me. I don't have any family or friends here. My mom died in December 2013 and I know that I am still grieving her death. We are going to bury my moms ashes over Labor Day weekend, so that should bring some closure. Also, I am going to participate in a Bereavement Workshop starting September 23rd, 2014, I think the workshop will help me a lot. Thanks for listening. : - )


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## evaj

Hi Ann,
I am happy it all went well. Good luck on the results of the biopsy.


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## LewisS

Not too bad, other than I keep going against my low residue diet. In the morning I take all my medication, drink my elemental and have something sensible like scrambled eggs. Then suddenly I'm eating a McDonald's. -_-

I blame pred!


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## valleysangel92

Tonight I'm a little apprehensive, I have my follow up with my consultant in the morning and things have been rough lately. I can't get off my steroids and pentasa seems to be doing nothing for me. 

I'm still waiting for a colonoscopy, no sign of the appointment and no idea how long the waiting list is supposed to be. I was referred on the urgent list 6 weeks ago. Not a peep. 

So this leaves us in a hard position. My MRI was ok but my fecal cal is significantly raised so we know there is inflammation there. However without a colonoscopy it's tough to know how progressed that inflammation is and therefore the best way to treat it. 

When I was in hospital in June it was suggested that I'd be started on azathioprine if we couldn't get the steroids lowered then. So that might be where I'm headed. I'm just unsure if my GI will be willing to move to that before the scope. I don't know how I feel about it myself. I know azathioprine is a big step, and I know it might be better to wait to have all the information, but I am so done with the constant pain and feeling sick and crippling stomach cramps. I'm stuck at 20 mg of Pred, any lower and I deteriorate fast. If I come off Pred and just have pentasa I can see me ending up back at the hospital. 

On the plus side, my consultant is someone I feel comfortable with and who I trust to make the best choice for me and to allow me to speak my mind and give me a part in the decision. So many doctors in the UK forget that as a patient the illness is a much bigger part of your life than just the time spent in that room and therefore don't take the time to explain things or take your experiences and concerns on board. Fortunately this one is different.


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## Ann Morgan

valley: I can't imagine waiting SIX weeks for a colonoscopy !  Wow. Why such a wait ? I think that once you have the colonoscopy it will answer a lot of questions that you have no answers to right now. I hope you can get your procedure done soon. I hope that your name is at the top of that waiting list. Hang in there and don't give up. 

I understand what you said about doctors not understanding the big picture. I went to my new Gastroenterologist recently and I tried to talk to him about everything that is going on with my health ( not just my Ulcerative Colitis ). He really wasn't listening. I have been having other health issues that I believe are directly related to the Ulcerative Colitis. He did not seem to care about what I had to say. He was just typing stuff into his lap top computer and he ordered a colonoscopy right away because of my new symptoms and because I had not had a colonoscopy in five years. I think I talked to the guy for ten minutes. He doesn't even know me. I made sure that my old Gastroenterologist records were sent to him but I am not sure he ever read them. He really must read them to know the history of my illness before I saw him. I saw my old doctor for 8 years, but my old doctor is not included in my new insurance plan. I had a biopsy, but I do not have a return appointment set up for him yet. I will see what the biopsy says.


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## valleysangel92

That's the urgent list, I have no idea what 'normal ' would be!  Unfortunately that's just how it is here. Although people have told me recently that they only wait 6-8 weeks on routine lists and they are in the UK too, so I don't know how that works! Must just be the way it is at my health board.  This is the major down side to the nhs. Don't get me wrong I love it, it's saved me and countless people I know and love. But the waiting is the pits. I'll be asking about the wait tomorrow but I don't know that there's much my consultant can do about it other than getting me admitted to have it that way. I don't think that'll happen though ( I hope not) . 

Urgh I hear you. I've had so many consultations where they spend the whole time looking at the computer or make me feel like I might as well tell the wall how I feel. Or I've had really rushed appointments because they've gotten themselves behind so then they haven't read your name never mind your notes and your in and out in 5 mins. I hope you get more joy at your next appointment!


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## dave13

Too bad about waiting so long,valleysangel92.I am happy to hear you like and trust your consultant.I totally understand the 'nose in the laptop,barely making eye contact' kinda doctors you and Ann Morgan describe.

I feel very fortunate because my new GI and my colorectal surgeon actually talk with me.They actually sit down,without a laptop,and let me ask questions.Which they even answer!The only time they use a laptop is to reference information on the subject we are talking about at the moment.


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## BlackButterflies

Hi guys
Rant time.  I am on pred again to try and stop my current bleed.  I go from on top of the world invincible to moody and then absolutely crash in exhaustion.  I am feeling hopeful though.  With the help of my husband I have started tracking food and symptoms better.  I was so overwhelmed and felt so alone before that I couldn't tell up from down.  I kept losing weight because I was hardly eating as everything caused problems.  I have now figured out a few safe foods and am building myself a food list from there.  I sure love him and all of his support.  
I am off of work again.  I just couldn't do it.  I was too damn exhausted all of the time again.  I am needing to nap every few hours again right now.  This brings me to my next issue.  I am a journeyman welder by trade - who has not been able to do my physical job for months now.  I don't think I ever can again it is just too hard now.  This leaves me needing a new career and feeling lost in that regard.  I think part of my problem is I am frozen by fear and too afraid to make a leap into a new career path as school is an expensive mistake if you choose wrong.  It's something I need to figure out over the next few days.  
Thanks guys.  It's nice to have somewhere to lay it all out.  Cheers!


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## RowdyRowdy

Butterflies.... I know how you feel, just coming off a six month break from work myself. I totally relate to the Prednisone roller coaster, they're not called The Devil's Tic Tacs for nothing! And when weeks would pass, and I couldn't tell up from down, I held on, waiting for the day when things would turn for the better...,from the inside out. And very recently, they have for me. And I say that only to say that they will for you, too. Don't put too much stock in your emotions, heck, half the time or more they're not even you- it's the meds or the Crohn's. Don't own negative feelings as much as possible, just put em on the  Crohn's account. Take what each day brings for what it is- nothing less or nothing more- the day itself is not just a means to an end but there is something there to be had for itself. And most of all, hold on to the hope of better things to come, because it will get better. Anyway, that's my take on these things, your mileage may vary.  God bless.


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## Ann Morgan

How do I feel ?   Well, this weekend I was out of town. I made some poor food choices at the airports and that, of course, caused me to have "emergency diarrhea". Emergency Diarrhea for me is when I literally have to run to the restroom and then hope I don't have an accident in front of everyone. The first time this happened I ran into the restroom and all of the stalls were taken and a lady was in front of me waiting in line. She must have heard the desperation in my voice because she let me cut in front of her in line.... Thank God !  

I made another poor food choice that made me have diarrhea in the airplane restroom and then when the plane landed I had to find a restroom then too. And even after I got home from the airport I still had diarrhea.(I was so happy that I did not have the urge to use the restroom while taking the cab home from the airport, I was very lucky ). 

I was also with some relatives over the weekend and I was not eating properly because I was not at home. My Aunt bought us pizza and she offered us fudge and cookies. On another occasion it was macaroni salad and sandwiches and cookies and punch. So, of course I just went along with the crowd and ate the food. There is so little that I can eat at a restaurant and so it is almost impossible for me to go out to eat, so I don't. If I prepare my food at home and I know what the ingredients are, then I feel better and I avoid the "emergency diarrhea". I gave up coffee and candy three months ago, but this weekend I ate some fudge and I had coffee twice. My Aunt seems to be eating all of the time. I don't know how she can eat so much. She is not obese, but she is not super thin either. I myself am obese, but I cannot eat large amounts of food at one time. I can eat smaller amounts more often throughout the day.

So, how I feel today is relieved !  I am relieved to be at home and able to control my diet better and make better food choices. I eat pretty plainly at home, which is boring but very wise. I have learned by trial and error which foods I can and cannot eat. I cannot eat greasy food, I cannot eat eggs, I cannot eat shellfish. Well, those are only three of MANY foods I cannot eat. Also, I cannot drink alcohol any longer because of my acid reflux. 

Well, I see my Endocrinologist tomorrow so I am curious about how much I will weigh. I lost 20 pounds between May and June because of my severe constipation and then later on I lost 5 more. I had lost my appetite back then. But now I feel my appetite coming back and I am concerned that I will gain the weight back !  I am obese, so losing 25 pounds is a big deal. I need to lose more even. The weird thing is that I do not feel any better after I lost the weight, I just started to have MORE problems.....with my colon and my arthritis and my joint disease and my feet.

Thanks for listening. I hope everyone had a good Labor Day Weekend.


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## Sherada

so i'm going to "check in" as I don't know anywhere else that my post really fits its just venting... This is Humira week 3 - Its 4:00pm and I get to leave work soon... I've felt sick to my stomach since about 11am, i ate lunch at noon and spent some time trying to throw up because of how nauseus i feel ... I've spent most of the day holding my head because I've been hot or cold ... had to politely ignore the comment by one of my coworkers that "I should throw up infront of someone that way people would know I'm not faking it" ... I love how people think you would want to fake something like this... I would love to feel healthy and have the energy to do my normal day to my fullest potential except my fullest potential is currently being used to hold my head up and keep a somewhat smile on when all i want to do is curl up in a corner and clutch my stomach.


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## dave13

I've been feeling pretty good since starting Remicade five weeks ago.Infusion number three is next Tuesday.This week has been filled with inappropriate cliche's for some reason.Looking skinny,losing weight,etc.

Cliche's aside...I'm feeling good.:ycool:

I'm apprehensive to say I feel good because each time I start to feel good,CD seems to want to remind me it's still there.

Can't run scared my whole life.F### You,crohns,I feel good today!


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## evaj

Great for you Dave13.  I have been on Remicade for almost 2 years.  I didn't think it was working, was tired of the 3 hour infusion. so I decided I was done and had my last one in September 2013.  2 months later I had 2 TIA's (little strokes) and about 2.5 weeks later in Dec I had a full blown stroke.  All because of my inflammation in my body from the Crohns. Bummer. Needless to say I returned to Remicade, and more meds for blood thinners etc. I still get angry because I am taking all these meds but still running to the bathroom, pain in my right side, nauseous majority of the time, fatigued all the time blah blah blah...frustrating!!!I hope the remicade works for you and you continue to feel fantastic!!!


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## Ann Morgan

How am I feeling today. Tired and my body hurts. I have spent today at home in my apartment. I have been sitting too long. Watched television and then somehow am now spending too much time on this computer, which makes my body hurt and my eyes very tired. I am going out tomorrow for my Physical Therapy evaluation of my shoulders ( joint disease and arthritis ). And I am going for a Physical Therapy session for my neck ( arthritis ). When I say I can barely move my neck, I mean it. When doctors ask me to look up, I cannot move my neck. When they ask me to look down, I cannot move my neck. And my side to side mobility is compromised. There is not much they can do for the up and down part, but my mobility in my side to side motion seems to be improving. I have been walking hunched over for at least 7 years and my neck has been bad since then too ( I walk hunched over and all I get to see mostly is the ground/floor ). When I had a job my co-workers always said " stand up straight". But I couldn't stand up straight. I just had some spine x-rays recently and I think some of the results came back saying that some things were curving to the left - - - that doesn't surprise me.  I get mad when I have to alter and change everything in my entire life based on all of the disabilities that I have. I cannot lift my arms very far, so I always need assistance at the grocery store. Traveling in the airport, well I have to have a guy push me in a wheelchair to get to the airplane gate. Talking to someone standing next to me, I cannot move my neck up to see them....so it is better if we both sit down so at least I can see them and talk to them eye to eye. My cupboards at home, I only use the bottom cupboards. I just get mad because all of the physical and mental health issues effect my life and I have to change my life to accommodate them. I am 54 years old and people 10 years older open doors for me. How embarrassing. Or maybe they think I have cancer or something because I have this outrageously short, short hair cut ( yes, it is like an Army haircut - - and I am a woman. But I like my hair cut, I am finally starting to "own it" after almost three years. ) Well, that is enough of my babble. It has no direction. It has no beginning. It has no end.


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## Polaris

I'm exhausted, have body aches, and also a bad headache that won't go away. I stayed home from work and pretty much laid in bed all day.


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## Ann Morgan

dear stelarjess: I am exhausted every day. Some call it fatigue. Some call it tired. I can totally understand how you feel. I used to have migraine headaches back in 2006 and 2007 and they were very painful. I once waited six hours in the Emergency Room to get help for a terrible, terrible migraine. Since I wasn't bleeding to death or missing a limb I suppose I got put down at the end of the list. So there I sat in a wheelchair in the Emergency Room waiting room leaning against a wall for six hours. I don't have one day where I don't have a pain or ache or discomfort. Many people dream of money or fame, I dream of having a good nights sleep and waking up refreshed and having no physical or emotional pain for just 24 hours.


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## Ann Morgan

How do I feel today? Well today my colon is feeling well, so I am happy about that.

But off topic: I am feeling pissed off. Someone has cut the gas line on my vehicle and so I have had it towed to my mechanic and my vehicle won't be ready to be picked up until Monday, and today is Thursday afternoon. I am pissed off that someone would mess with my vehicle and vandalize it. Did they do it to get some gasoline ?  Or did they do it just to vandalize something ? I am 54 years old and I have never had someone damage my vehicle before. I guess this is a question that will never be answered.


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## Polaris

Ann Morgan said:


> dear stelarjess: I am exhausted every day. Some call it fatigue. Some call it tired. I can totally understand how you feel. I used to have migraine headaches back in 2006 and 2007 and they were very painful. I once waited six hours in the Emergency Room to get help for a terrible, terrible migraine. Since I wasn't bleeding to death or missing a limb I suppose I got put down at the end of the list. So there I sat in a wheelchair in the Emergency Room waiting room leaning against a wall for six hours. I don't have one day where I don't have a pain or ache or discomfort. Many people dream of money or fame, I dream of having a good nights sleep and waking up refreshed and having no physical or emotional pain for just 24 hours.


I'm so sorry you had that experience  I've also had to wait in the ER, in the hallway for hours, with a heart rate in the 150s no big deal! I also dream for the same. I don't remember what it feels like to feel normal, or have energy. Hugs to you.


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## chuckmya

Started feeling like I may be getting a blockage about mid day! Ugh severe pain! Thought it was because I didn't get a chance to have a break @ work and didn't get a chance to have a snack! Ate lunch and was starving and it seemed to get worse! Ugh! So I stopped @ the store on the way home from work and bought some ensure. Had one cause I was kinda hungry and was afraid to eat!!! Don't want another blockage!!! Amazingly I feel much better this evening!!!  How long should I continue with the liquid diet???:shifty::shifty::shifty:


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## Ann Morgan

chuckmya: Can you call your doctors office and just talk to a nurse or nurse practioner on the phone to ask them about the liquid diet without actually having to make an appointment to see the doctor. What about a Physicians Assistant, some of my doctors offices have those. Sometimes I can call the Medical Assistant for the doctor that I see and she/he can talk to the doctor and then give me a call back answering my question without having to go into the doctors office. PS: Love your dog photo !


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## BlackButterflies

Spent the last few days in a post-prednisone funk.  I don't even know where the time went or what I did.  I have not been to work and I did not leave the house.  I pretty much slept and wandered my house like a zombie.  I finally went out this afternoon with some energy and I have decided something:  I am going to kick Crohn's ass.  I am not letting it control me anymore than it should.  I refuse to let it kick me and keep me down.  That is bullshit and I am not taking that.  I have spent the last year bleeding a full eleven out of twelve months and am currently not having a bleed.  I am keeping food in me pretty well.  That is my first victory.  It won't be my last.  I will fight this upsetting never ending fatigue.  I will fight the anger and the sadness and the fear this disease has made me feel, sometimes all within the same moment.  My story won't continue this way.  I refuse to let it.


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## Honey7

Morning all. I am feeling very anxious today I am doing my prep ready for a Colonoscopy tomorrow. I am dreading having it done as the last one I had was very unpleasant. I am not looking forward to drinking the laxative drink I have been told it tastes disgusting. I also feel very unwell today, I have just had 5 days where I had no pain just D and a sore mouth, I thought this flare was finally going but yesterday it came back with a vengeance. I have an awful pain in my right hand side that hurts even more when I breath in to deep, I also have horrible sweats and feel dizzy. I am so fed up as I felt much better and now I feel worse than ever. Sorry for moaning.


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## Gram214

Honey7, feel free to moan any time you want. We all are here to lend an ear !
Colonoscopy should not be unpleasant...just that darn prep. When I have my scopes done my GI makes sure I have the most pleasant nap during it. 
 By the sounds of things you should be diagnosed very soon.. then you can get on meds for it and hopefully get to feeling better. God Bless


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## dave13

Honey7-I was out for my colonoscopy too.Check to see if you have the option.You wake up and it is over.It is good to have someone with you,an advocate,when you wake to hear what the doctor has to report back in the recovery room.Good luck!


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## Honey7

Thank you for your comments Gram 214 and Dave 13 they have made me feel better. I have drunk a liter of this nasty stuff just got to keep going I think I will struggle with the second liter all though I know I have to drink it. The reason I am dreading tomorrow is because the last Colonoscopy I had they never gave me any sedation it hurt so much and also they could not do it properly as I was very blocked up even though I had prep last time they had to stop and reschedule. They have said I will definitely be sedated tomorrow. Hopefully I might at last get a diagnoses.


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## Ann Morgan

Honey: I agree with Gram , a colonoscopy should not be painful. You should always be totally sedated during the procedure. I have a new Gastroenterologist and I was quite concerned before my recent colonoscopy because I had a new doctor and also he performed the procedure in his doctors building there and not in a SurgiCenter place. I was also concerned about anesthesia. Believe it or not I called the Anesthesiologist and I was guaranteed that I would be totally sedated and not just put into a twilight sleep or something like that. I also asked what the drug was that he would be giving me. He gave me Propofol. During my last colonoscopy with my old doctor, I was given Versed. I really liked my old doctor and trusted him a lot and I saw him for 8 years. But my Insurance Company changed and I could no longer see my old doctor. PS: I hated the prep liquid too !  I have heard the new prep liquid is better now than it was 5 years ago. I don't agree with them. The prep is worse than the procedure. Propolfol, I have heard, is a short term drug, which means it stays in your system for a very short time. I did not have any side affects from the drug or the procedure. Actually I was doing some house-cleaning that same afternoon ( weird, I thought ). Please call your doctor to make sure you will be totally sedated this time around. It should never hurt to have the procedure. I DID have a Flexible Sigmoidoscopy many years ago, and I was awake for that !  That was terrible. Take it easy and try not to worry. I am a worrier too and have a lot of anxiety.


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## Ann Morgan

Honey: When I did my prep this is how it went. I had my colonoscopy on August 21st. At 6pm on August 19th I was to start only drinking liquids ( like apple juice and Jello and stuff like that ). On August 20th I was to remain on the liquid diet. At 4pm on August 20th I took the first phase of my prep liquid. It started to work pretty quickly for me. On the morning of August 21st, the morning before the procedure, I took the second phase of my prep liquid at 8am. My procedure was at around 1pm that afternoon. I had the procedure and then I woke up afterwards. I felt okay. Normally a person from your friends or family drive you home after the procedure, but since I don't have either I was allowed to take a cab home. That was how it all went for me.


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## duh panda

Evening all,

Haven't posted on this thread before but I felt a bit of honesty is needed in my day and this is as good a place as any to get it out there! Symptoms have been "normal" for me, but the idea of what normal exactly is has me pissed off and overwhelmed with sadness all at the same time. 

At the beginning of this summer I moved 1000 miles away from my college town with the love of my life, was starting on cimzia and was very  hopeful. On Tuesday I will return to my mother's home for the first time in 6 years because the cimzia failed, I will require another's assistance to get to the infusion clinic to begin entyvio, and I am unable to care for myself. I cannot ask my S.O. to continue sacrificing his career and medical care to cover my persistent costs and needs even though it is perfectly Okay by him. Not to mention caring for my crohn's is a full-time job in and of itself let alone on top of being the sole income at a job that requires 60+ hours per week. So I am going to where the resources are to get healthy, and he will stay here to hold down the fort and work on building a home for me to come back to. In this I know I am lucky, but I don't know what we will or can do if this doesn't pan out. If I leave, continue to work hard on my health, continue to support and treat my body, and continue to see no improvement.

No one exactly dreams of a life of spending hours every day managing pain, scheduling activities, responsibilities and tasks around eating and medication schedules, telling their body to "just move dammit - it's only one flight of stairs!" or that taking a shower and being able to wear jeans instead of sweats or pj's an accomplishment. 

A week from today, 8 years ago, I was hospitalized for the first time and diagnosed as my body shut down on me. This will be my 9th year with severe/ acute systemic crohn's and today I'm so tired of being strong, of being hopeful, of telling myself the next med. will be the one for me, that I will be one of that 33% that sees a response or even remission. I can't bear to think about what happens if I'm not. 

I keep being told to be strong, to have faith, all those cliche's I know you all know as well. 

Thing is, I know I'm strong, I'll get through it; but other's don't seem to realize the price and sacrifices made for one to be strong and persistent in the face of chronic illness. I keep telling myself someday will be my day - but I want to feel like I have a full life today - not just someday - because I've been telling myself that for 8 years and believe it a little less with every additional year. In being strong I find I can't be there for others as much as I'd like, I have to watch their struggles and know what I have to offer probably is not enough. In being strong I have to leave the person I love so I can focus on myself and vice versa. In being strong I have to accept that the life I dreamed of will not be the life I lead. Instead I walk a path covered in underbrush that makes me feel clumsy, slow, behind the curve, and constantly working far too hard for far too little. I'm only 23, there's a lot of time for me to make this path mine, to rock it, for the underbrush to lighten up a bit but today I so badly wish I didn't carry this burden. I wish I didn't see how I'm not the only one in my life who's dreams and imagined life won't come true - my mother's dreams for her daughter, my S.O.'s dreams of family life, my younger sister's vision of me standing, dancing and laughing beside her when she gets married next saturday. Instead, it's just a little bit skewed - and while they all seem to be ok with it all because they are just so happy I'm still here, still fighting, still around in some capacity I am sad for all that's been lost and will continue to be lost, and so angry at that voice in my head that keeps telling me maybe tomorrow will be my day. I'm just craving that normal, boring, movie like, cliched, american dream in my life - no strings attached.


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## dave13

Wow,duh panda.Sometimes it does seem all we do is fight each moment to make it to the next.We don't know what each day will bring.We would all love to live 'normal' lives and have them come out the way we dreamed they would be.

I hope your move helps you achieve your dreams.Through your sadness I still hear the tone of someone who fights,who is very tired,but still fights.You are a strong young women that seems to have a very supportive family.Take the small victories where you can and keep moving forward.

I am amazed each day at the strength of Crohnies.


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## Honey7

Hi all I had my Colonoscopy yesterday and you were right I did not know anything about it. I went in and joked saying can they give me a double dose of the sedative and to my amazement he said yes. I was completely knocked out when I came round I felt fine except I was very sleepy. Definitely the worst thing was the prep, I would never worry about having this procedure again. They took biopsies and now I have to wait for the results which they said I should get within two weeks.I hope by me putting this on here it will put other peoples minds at rest if they are worrying about having this done so long as you are sedated there really is nothing to worry about.


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## nogutsnoglory

Feel like crap today, my stomach feels like a punching bag. My crohns never wants to stay hush it's always active


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## EvieBaby

Today I feel much better. Yesterday was a really low day for me with one thing and another. I hate getting that way but I think its good sometimes to have a wallow and then get back to normal. I have been scared to eat much today as I'm still really sore from having the Seton in and going to the toilet is a bad experience. But I can't stop it and I can't go all day with nothing I guess. I'm back to work tomorrow so I'll see how that goes!


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## Sherada

4th Week on Humira: Had a fever of 102 this past saterday then 100 on Sunday ... called into work because I'd been sleepless and feverish all weekend...called my doctor on Monday morning who said if I got a fever again go to urgent care, I got my 100 fever again at about 5pm and went to urgent care ...so they take a urine sample Lo and behold ...I have a urinary tract infection.  I have to believe that this is due to Humira I've never had a UTI before...  I'm starting to not like this drug ... not to sure what I'm supposed to do to prevent future UTI's when I wouldn't have it if Humira wasn't lowering my ability to fight infections.


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## dave13

I just had my third Remicade infusion today.I'll move onto the eight week plan from here on.

My fistulas are draining more since starting remicade :ack:,sorry about that image,but my GI and colorectal surgeon are happy.If that is what has to happen to get rid of the fistulas,than I'm a happy camper too.

I'm getting use to the setons,Remicade seems to be doing what it should be doing,my recent sbft showed my resection is looking healthy and upper GI clear of inflammation.

I have to say I am feeling pretty good right now.


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## indianhart

Urgh, sorry to say I am in a flare....Bummer.  Been through some stress and I totally get why Im flaring.  It doesn't make it any easier though.  Been struggling the last couple of months and doc has decided to up my Imuran and add humira.  I have a love/hate relationship with medicine.  I wish I wasn't on any but am so happy there is something for relief.  Eating my "safe" food, cheese and saltines and G2.  Let's see how that will go!  Thanks for listening...:frown:


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## Ann Morgan

honey: I just had a colonoscopy recently too and I am waiting for my biopsy results. I have had three colonoscopies in the past, but I have a new Gastroenterologist this year and I was a bit scared about the procedure because it was a new doctor. As soon as the RN put the sedative in my IV I was knocked out immediately. When I woke up I felt fine and it seemed like no time had passed at all. The only thing that was different this time was that I had air in my colon that I had to expel and I had not had that happen in my previous three procedures. Hope your results bring you good news.


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## IofNewt

Crappy. Ring-of-fire. Cramps. Tired. Achy. Annoyed. Frustrated. Everything BUT hungry. All in all, same as yesterday and the day before.

This has been going on for weeks now. I am not eating. At least not properly... whatever properly means for crohns sufferers. The only things I can keep in me are rice krispy squares (which doesn't make a lot of sense, but OK), kraft dinner, chocolate, grilled cheese, gummy bears or worms (thank you bad tummy Gods for that small mercy), croissants, salmon and rice (my one full meal this week so far...) and mints.

Not exactly a menu chok-fulla goodness, is it? And I am only eating these things cuz they are not sending me running to the toilet every hour and not cuz I actually want any of them (except for the gummies... I totally want those!). Oh and cuz even though I don't want to eat, I do have to eat something.


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## lisadc1

not sure which is worse...the crohns symptoms or the low immune system, always feeling sick & fatigued. I feel like a hypochondriac, only I am NOT. I feel never felt so ill for over a year consistently in my entire life. And trying to keep up with a full time job teaching little ones, taking 12 hours grad classes, and taking care of my family...I am crawling by the end of the day. And my massive schedule the lass four days has allowed me only 4 1/2 hours sleep at night, when my body requires WAY MORE than that now. How am I feeling today? Defeated...


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## Ann Morgan

lisa: Wow. I admire your strength. My niece has been teaching little ones for 15 years now, and I see it on her face that it just literally exhausts her ( and she is only 37 years old, but she also has two kids of her own ).  I have not worked in 5 1/2 years and I receive Disability benefits. I don't think I could ever work again. Today I took a cab to my mechanics garage across town. Then I picked up my vehicle there. Then I went to the gas station. Then I went to a Laundromat to do my laundry. Then I went to the grocery store. Then I mailed three letters. I was only gone from my apartment for less than four hours and I was totally physically and mentally exhausted ! I suffer from Ulcerative Colitis, many other physical health conditions and mental illness. I am just tired all of the time. I don't know the anecdote for all of this. I wish I did.


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## Ann Morgan

NEWT: I have been experiencing a lack of appetite or less of an appetite since May of this year. I have had some changes in my Ulcerative Colitis and I believe those changes have changed my appetite. In May I started to get severely constipated after having diarrhea for 17 years. Because of the bad constipation I did not want to eat ( who wants to eat food when it doesn't want to come out ). I have lost 27 pounds ! I am obese and so my doctors think it is fantastic that I have lost the weight. But I have not been TRYING to lose weight. If a person is trying to lose weight and is eating healthy, then that is normal. But when a person loses 27 pounds and is not trying to lose weight, then there is a problem there as far as I can concerned.  Hey, don't worry about the foods on your list. You can eat anything you want to. Some foods that make one person have diarrhea may make another person have constipation. It is good to have a list of foods that don't bother you. I eat a very small variety of foods. I eat my healthy breakfast smoothie, I will eat cereal and milk. And I will eat macaroni and cheese. These are my basics. I gave up coffee and candy four months ago. Keep in touch. Keep eating those gummies, you should be able to eat something that makes you happy.:ylol:


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## chuckmya

Feeling hopeful today!! Going to see my GI in boston today for a consult to decide what meds to put me on! Results of a recent colonoscopy revealed severely active chronic enteritis @ the anastomoses! Humira hads been mentioned but recently have been experiencing obstructive symptoms! Was a liquids for a couple of days and am now on a low residue diet! Afraid to eat anything with any amount of fiber... Wonder if she may put me on some sort of steroid as it will be a while b4 the humira is approved by my insurance? Which steroid has the least amount of side effects? Entocort? Budsonide(spelling) what is your experience??? Thanks! Oh and I am recently diagnosed but have had major symptoms for about 16 years....and several surgeries later


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## dave13

Day after Remicade and feeling pretty good.No uncontrollable urge to nap the day away.

Sending everyone positive thoughts.


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## IofNewt

Ann Morgan said:


> NEWT:   Hey, don't worry about the foods on your list. You can eat anything you want to. Some foods that make one person have diarrhea may make another person have constipation. It is good to have a list of foods that don't bother you. I eat a very small variety of foods....
> 
> I eat my healthy breakfast smoothie, I will eat cereal and milk. And I will eat macaroni and cheese. These are my basics. I gave up coffee and candy four months ago. Keep in touch. Keep eating those gummies, you should be able to eat something that makes you happy.:ylol:


That is basically what I do, eat what doesn't bug my tummy. One annoying aspect though is that every six months or so, foods that weren't bothering me, will start. But out of the last 10-15 years there have been a few constants and while it's surprising gummies have never ever let me down. 

We did a crapload of groceries today and hopefully most of it won't bug my tummy. We bought stuff we know for sure won't and stuff that I haven't eaten in awhile, but didn't bother me last time I ate it. 

I hardly ate anything yesterday, which annoys my BF even though he gets why I'm not eating and I am trying not to repeat that today. We even plan to go out to dinner tonight and even if I can only order some cheesy garlic bread, that's what I'll do!


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## KayleighMeek

I have had a good few days as I have taken leave from work for a week and it feels so good being away from the stress. We have been sorting through the house getting rid of old stuff and got some nice new furniture and it has made me feel much better getting everything sorted. Today has been a rest day as my body gave up this morning and decided that was enough but hoping to go to Brighton for the day tomorrow to have a walk around the lanes.

I am also really happy as my joints seem to be doing well still achey but I am able to cross my legs which I haven't done in years. I was so pleased when I realised I shouted to my other half to come and look lol. I know it won't last forever but I am greatful for whatever amount of time my body is willing to give me away from the joint pain. My stomach is still not very good and food is not very appealing at the minute but I am managing and the weight loss has stopped.
Mentally I am feeling in a much better place as a few months ago getting out of bed in the morning was a struggle and as always had the wonderful support of the forum, I am so greatful for this forum and all of the people on it.


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## Ann Morgan

newt: I have not been able to eat seafood for years now. For some reason I cannot eat eggs at all. I cannot eat any raw vegetables. Cooked carrots are the only cooked vegetables that I know for sure I can eat. As far as fruit, the safest is the banana. The rest of the fruit family, well I am not sure I can eat any of them. I don't eat meat much at all, although I sometimes buy tilapia fish. I can eat any and all dairy products, hooray. I love my dairy products. I used to eat all kinds of candy and none of the candy bothered me at all, but I chose to give it up because I suffer from anxiety and candy and coffee are both stimulants. As far as restaurants I had a disaster recently when I had to fly out of town. I was with my sister and niece at the airport. We ate there. I ate some foods that I knew were going to really bother me ( stupid, but I was hungry ! ). So about 1/2 hour later I was running to the restroom. All of my lunch ended up in the toilet, gross but true. On the way back from my trip I ate a large chicken salad sandwich. I was on the plane for about 1 hour before I had to run to the bathroom and have diarrhea from that !  Thank you for sharing with me. Sorry this is so long, yikes.

*I was misdiagnosed in the late 1990's
I had an anal fistulectomy in 1992
I had my gallbladder out in 1995
I started having diarrhea in 1997
I had two rectal abscess surgeries, 2002 and 2009
I was properly diagnosed with Ulcerative Colitis in 2006
I first took Asacol and Questran. Now I take Lialda and Questran
I started to have bad constipation in May 2014
I had a colonoscopy with my new Gastroenterologist in August 2014
I am now waiting for the biopsy results of that colonoscopy*
_*I also take B12 vitamin and D3 vitamin*_

:sign0085:


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## Ann Morgan

panda: Thank you for posting. A lot of folks don't understand that when we suffer from a chronic illness ( our physical health ) that we also suffer emotionally ( our mental health ). It is sometimes a vicious circle. Don't give up hope. Hope, for me, is the most important thing in my life. If I have hope, then good things will follow. You are a very, very strong person. I could not do all that you do. Taking care of yourself is not selfish, it is being assertive. And being assertive means that we are getting our own needs met. Please take care of yourself.:Flower:


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## Sherada

Feeling cold and feverish, really tired today... had an allergic reaction to salt water taffy last night, probably shouldn't pick taffy from the bin with the hazelnut taffy ... had to take benedryl and was out like a light by 9pm... The urinary tract infection seems to have subsided although my stomach is still achy... might leave work early today just so darn tired.  I dont know how many crohns sufferer's work or don't work but I really wonder how anyone holds a job while feeling so crappy so much of the time


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## Ann Morgan

Sherada: I used to work, but I don't any longer. I got let from my job due to "workforce reduction" in 2009. But I also applied for Disability in 2011 and I won my case in 2013. It was terrible while I was working, always running to the restroom with my diarrhea. Always afraid I would have diarrhea in my pants at work. And, OMG, I even had to go out of town for business trips for my job! I don't know how people work either when they have so many terrible symptoms of the Crohn's. They are very strong people. Although I have other health conditions that were taken in consideration during my SSD case, my Ulcerative Colitis was one of them. Stay Strong and keep in touch.


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## IofNewt

Ann,

Believe it or not, I used to be a real foodie. I'd even started to cook on a grand scale.. something I'd avoided for ages due to my complete lack of patience, but crohn's sort of killed "foodie me".

I date/live with a chef... I love him to pieces, but it's also a fair amount of torture for him and me. He's like a child in the grocery shops running up to me with some food item and a well-thought out story about how he'll prepare it for me, only to be told about 75% of the time, "Babe, I can't eat that". 

It's taken me 2 years to convince him that just because *I* can't eat something doesn't mean he shouldn't buy it for himself.


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## dave13

IofNewt said:


> It's taken me 2 years to convince him that just because *I* can't eat something doesn't mean he shouldn't buy it for himself.


I tell my wife this as well.She feels guilty eating something she knows I can't.I'm happy she cares so much...but,geez...of all the things CD puts us through,I can handle her eating something 'forbidden' to me and feel good about her enjoying it.


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## Grumpy1

today, I'm tired, just spent 7 hours in emerg - trying to find out if I have pancreatitis again.  Thankfully not, just have a problem with my gall bladder - I would like a couple of days that nothing goes wrong from this foolish disease please.


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## afidz

Today, I feel defeated, mentally and physically. I haven't had Humira in 3 weeks thanks to my insurance. We had a cold front come in and drop temp over 40 degrees over night and my entire body hurts. Talking with my boyfriend, I admitted how I feel. I conceed, throw in the white towel. I can't be strong anymore. I am not strong. I am in a lot of pain and I can't deal anymore. Don't misinterpret what I am saying, I am not going to cause harm to myself, I just don't know what to do anymore. I am seeing a rheumy for the first time on Monday. I think I am going against my convictions and  risking addiction again and going back on pain meds. I am sure that sounds over dramatic, but the last time I withdrew off of them, I promised myself not to do it again, and I haven't. But I can't do it anymore. I need clarity. I need to be able to focus on getting better, and I can't if all I can do is lay in fettle position in bed. Anyways. Thats how I am feeling


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## neohic

Frustrated, depressed, and fed up. I've finally gotten over this couple month long hellacious skin disease that I was struggling with all summer long all the while having more downs than ups with my Crohn's. For the last bunch of weeks I just haven't been able to shake this gut rot that keeps coming and going through each day. Lately, I get up in the morning feeling okay, get some breakfast and feel a little better only to slowly get worse throughout the day. Nights have been just lousy. I stay up late tossing and turning when I should be sleeping. I went back to work a few weeks ago too (I work at a tech college) and I know I haven't been pleasant at all. That makes things all the more difficult as I work directly with students... and trying to teach and play nicely with others has been less than easy. On top of things, I've borderline hated my job for about a year now. Coming up this Thursday I see my doctor along with talking with potential opportunity for a new job. Honestly, it's almost like waiting for Christmas. Also honestly, I've never really liked being poked and prodded... so it's super awesome having this disease. I've never enjoyed going to my doctor even though I know I need to. This time it's different though. Never have I been there showing this level of symptoms. Sure, I've been in the hospital a couple times for it, but my symptoms have been relatively okay (or okay enough) over the years. Since everything has been so awful I'd be tickled pink to go see my doctor, have him look me over and say something along the lines of, "Oh! We just need to change your meds a bit!"... even though that won't happen. I won't get into everything that I've been dealing with on my house, but it's also right up there.

Today I feel frustrated, depressed, and fed up because I have several reasons to be and it's all piling up lately.


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## Ann Morgan

neohic: I understand about your depression. I have some physical illnesses in addition to some mental health issues and I have no doubt that one has lead to the other. I see so much of myself when I read what people write here. Depressed, fatigued, overwhelmed, angry, disappointed. We just want the vicious circle to stop, or at least slow down for a while.  Take care of yourself and keep writing.


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## IofNewt

Saturday was actually pretty good. Went out to hairdressers for s trim. Had lunch with my mom and didn't visit the bathroom 800 times... well there was still a lot of pee, but that's ok!

But today is a totally different story. Feel like crap. Plus my landlord is being a douche.


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## Ann Morgan

newt: 20 years ago I was a vegetarian. I ate very healthy and I took interest in purchasing and preparing my meals. I walked 20 minutes every morning before I had to go to work. I rode my bicycle every Saturday and Sunday. It was the healthiest time in my life. I lost a lot of weight too. Sometimes I think back on it and I wonder.......HOW DID I DO THAT !  Now I suffer from mental health issues and physical health conditions that are numerous and tiring. Now I just want to get a good nights sleep and not feel tired all of the time. It's pretty bad that my biggest dream is to sleep for 8 hours in a row and wake up refreshed and feeling great.


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## Sherada

afidz: it sucks that things are so bad right now for you   I definately understand about the insurance company and Humira... it took me three months to get the medication from doctor prescribing it to my door and then last month they rejected it again but I found out that my pharmacy was trying to fill the loading dose again for some reason.  Hang in there I know things are just really crappy sometimes... if the pain meds can help don't beat yourself up for going on them I'm sure anyone would do the same in your situation.  Do you have anyone to be with while you feel so crappy?  even if I feel like I need to just be in fetal position i'll have my fiance sit on the bed by me until i pass out sometimes its just nice knowing they are there supporting you.  I hope things turn around for you soon


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## Ann Morgan

Anyone: Okay, I have learned more about my Ulcerative Colitis here on this website than in the 8 years since I was diagnosed ( and I have been having symptoms for 17 years ). Why can't they scope the small intestine ? I have heard about that camera pill more than once for the small intestine. I know some of the parts of the digestive system, but I guess I will have to do more research on the small intestine. I suffer from beginning to end: I have the acid reflux, the Ulcerative Colitis and hemorrhoids. Yikes.


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## Ann Morgan

I had a colonoscopy with a new doctor on August 21st. I received my results today. The results said : Findings: Mucosa: Normal mucosa was noted in the whole colon. There were no AVM's, polyps, masses, evidence of colitis or other abnormalities seen. Retroflexion of the scope revealed nothing remarkable. Random biopsies were taken throughout the colon. Impressions: Normal mucosa in the whole colon. Final Microscopic Diagnosis: Colon, Random, Biopsy: Unremarkable colonic mucosa. No dysplasia or malignancy identified. Comment: In some patients with long-standing IBD in remission (or with treated, quiescent IBD) the colonic mucosa can revert to a normal histologic appearance. No dysplasia or malignancy is identified. 

Does this mean I am in remission ?  I had diarrhea from 1997 through April 2014. Then I started to have severe constipation. I am still having constipation, but it is not as severe as it way in May 2014. My doctor did not schedule a follow up appointment for me and him to discuss the results and treatment plans etc. He had an office gal just call me on the phone with the results. She said the results were normal and the doctor wanted me to go off of my meds. I said I cannot go off of the Questran because I get sick if I don't take it. She called back and said the doctor said I could stay on the Questran. I went to their office to personally pick up the results of the colonoscopy and biopsy today ( I guess they will eventually get to me in the US Mail too ). I have another appointment with him on October 22nd. I want a Bile Malabsorption test. I will have to see what he says. Thanks again for listening.:sign0085:


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## valleysangel92

Adfiz - I'm so sorry you are having such a tough time  you really deserve a break, I hope things take an upward turn for you soon and keep on that path. *hugs*


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## Gram214

Hi everyone . Haven't checked in lately...but here goes ! Yesterday was my Remicade finally !! I totally needed it as I was going downhill fast. So much time in the bathroom and in so much pain everywhere ..and the fatigue ! Ughhhh I had theeee worst" D" yesterday and last evening after my infusion. I keep hoping it was the drug attacking my gut ? Anyhow today I do have more energy and feel less pain overall . Fingers crossed I can keep from having any surgeries. Haven't eaten anything but a Twinkie and 2 cups of coffee so far yet though and it's past noon . LOL  
Had to also tell my fellow sufferers about  the "find" I made recently. It's a product called Poo-pourri . ( Ordered it on-line) It's a liquid you spray into the toilet before you go and this is the first thing in all my time of having this dreadful disease I have found that genuinely works ! I have been embarrassed beyond words through the years. Just thought I'd put this out there for anyone interested.  God Bless


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## Sherada

Ann:  That's awesome! I would say that means you're in remission! How do you feel tho? Hope everything is going well, thanks for all your support its really great how active you are on this forum.

Gram: I hope things clear up for you soon... I have heard of poo-pourri I haven't tried it though if you get a chance and need a laugh you should watch the poo-pourri commercials on youtube.

As for my check in: I'm doing pretty well this week has been pretty good I have more energy and only have had some small stomach aches... took my dog for a walk yesterday and i think it was really good for both of us.


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## Gram214

First off Ann..amazing news. But just because they didn't see anything if you are having troubles there are things amiss ? Hope you start feeling better . I am here to listen and send my best wishes. 
Sherada..good for you walking your doggie. I have 2 a Chi-mix and a Schnoodle and walk them daily a few times if I possible can...albeit sometimes they are the ones taking me for the walks. LOL  Only thing that keeps me from laying around feeling sorry for myself lots of times. My hubby does help but I try to take them as long as I'm able. They are my little lovey boys !
 I totally agree with your advise to afidz. Taking pain pills is our right and suffering needlessly isn't good for our physical or mental health. It's not addiction if you truly need to take them for legit reasons. 
 Oh and the Poo-pourri commercials..I have actually seen them and I was so amazed I had to try the stuff. Hilarious !!!  Stay strong and well !


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## sully1102

Today was a low day. After re-starting antibiotics recently due to an abscess, my "window of opportunity" from the first urge to "Oh crap, it's coming" is greatly reduced. I usually don't leave the house until after my 2nd BM to give myself some guard.

Decided to go meet my wife at her office for lunch. As I'm going up the elevator, the first urge starts. I start breathing, knowing that I'm two floors away. Then I start thinking about her office uses a shared bathroom, so it's locked. On the next floor, the elevator stops and someone gets one.

Then holds the door. And holds it... and holds it... the exact opposite of what I can do at that moment.

At the next floor, I run to the bathroom door and text her to meet me ASAP to let me in, but the damage had been done. 

Went back home (I work from home), showered, changed, and was grumpy for the rest of the day.


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## Ann Morgan

sully: 

When I was still working ( an office job at a bank ) I had an accident right before I was to start work at 7am. We had a parking ramp across the street from my job. The ramp connected with our high rise building through a tunnel underground ( sort of like crossing the street, but you are underneath the street ). Anyhow, I was half way through the tunnel when I felt the urge to have a bowel movement. It was what I called " emergency diarrhea". I tried not to panic and I tried to calm down and breathe. I KNEW there was a restroom at the end of the tunnel, just a short floor down a little elevator. I tried my best to make it to that restroom, but it just didn't happen. I was in the tunnel and had diarrhea in my pants. Other folks were walking through the tunnel on the way to their office jobs. I acted calm and got on that elevator going one short floor down. I went into the restroom ( it was a single restroom, like a handicapped restroom, so I could be in there all alone ). I don't know how much I can say without getting too gross. But I had to take my slacks off. Take my underwear off. I had to clean my body off. I had to wash my underwear in the sink. I had to check my slacks and shoes to make sure there was no poop on them. I dried my underwear the best I could with some paper towels in the restroom. I put the underwear back on ( they were damp, but not wet ). So, I was all cleaned up ( my body and my underwear ). I went over to the main elevators, I pushed the button for the 8th floor ( the floor I worked on ) and I actually went to work !  I did not go home ! Well, that shows you how dedicated I was to my job ! I hope no one noticed anything different about me that morning in my department. I DID get counted as being tardy for showing up late that morning. I cannot believe I even went to work and that I just did not turn around in that tunnel and just go home. Well, that is my gross story. 

But I have had many, many, many close calls over the years. I actually wear the large, long Poise pads every day now just in case of a close call diarrhea accident and / or an incontinence situation. If I wear the pads I have some sense of comfort because if I start to just have a little diarrhea coming on before I get to the restroom, the pad will absorb it, and not my underwear. Well, that is TMI that is for sure. 

I think I have had two or three other occasions where I had accidents and I was not at home. Before I even knew I had my disease, and before any medication, I was sick all of the time. I even went on a trip to San Francisco in 2001 with my sister. She remembers fond memories of the trip......and I remember how sick I was !  I had diarrhea and vomiting and I was miserable. 

Thanks for listening to my gross story. : - 0


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## neohic

Today I feel nervous and drippy. See, tomorrow I go and see my doctor to discuss how I've been doing lately. Unfortunately we have much to discuss and, while I was looking forward to it a couple days ago, that's now changed to the thought of potential bad news. As for being drippy, I picked up a really bad cold. Took today off work (which is weird because over the six years at my job I have called in sick only three times with two of which being over the last couple weeks) and have been chasing my nose all day. I'll most likely be enjoying this for the next couple weeks. Always one thing or another...


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## Polaris

I slept for 8 hours today. After sleeping 8 hours last night, too. Sometimes I can't believe how fatigued I am after doing so little.


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## IofNewt

I am always afraid that if I sleep in late or nap on the weekends that I would have trouble sleeping at night because that used to be the case when I was a little less sick (ten or more years ago now), but that fear is never realized.


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## afidz

I have been trying to keep up with everyone, or at least keep up with everyone's expectations of me...and I am exhausted. I finally saw a rheumy this week, and I did get pain pills, but they don't help. Whatever is going on with my bones and joints is getting worse. My left leg couldn't bear any of my weight this morning so I didn't make it to the bathroom...thats always fun. Sometimes I just want to tell everyone to eff off and lay in bed and watch sad movies.


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## Ann Morgan

I went to my Rheumatologist recently too, or maybe I should say I went to see the Physicians Assistant at my Rheumatologists office. Maybe a person has to be rich and famous in order to see the "real" doctor ?  The PA gave me three lidocaine shots in the left side of my neck and she is referring me to a Pain Management Specialist. She talked about Botox. My Primary Care Physician sends me to a Specialist who sends me to another specialist ?  Say What ?


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## afidz

I was informed by my rheumy that pain killers are going to be classified under schedule 2 starting sometime in October.  That means that only certain doctors can prescribe them.  This is nation wide.  I'm being sent to a pain management specialist as well.  The government is trying to cut down on abuse and addiction


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## Ann Morgan

Bummer about the pain pills !  I was on hydrocodone for three months once. I called them my "happy pills".  I was happy for three months.

I saw a TV show once that was filmed in Florida. The whole show was about all of the pain clinics in Florida that prescribe all sorts of pain pills to just about anyone. There are hundreds of these pain clinics. People stand in line to get into the buildings. Customers were even coming in from out of town to go to these Florida pain clinics to get prescriptions for pain killers. So what about these clinics in Florida, what is the government going to do about them ?  

I bet doctors will still be prescribing plenty of pain pills to the rich and famous too.


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## afidz

I don't know about the rich and famous,  nor about the pain clinics in Florida.  But I do know that pharmacists were starting to question the patients as well as the doctors because they were getting in trouble for aiding people's addiction.  It's not hard to see a pain specialist,  they are just doing it that way so that they can manage the way that they are used a lot better,  reducing the chance of addiction, abuse and misuse. Yes, it is more of a hassle, but I get it


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## dave13

My wife broke her wrist four days ago.I had to bring her to the ER Tuesday night,and got home early Wen.morning.ER visits are never a quick thing.I've been taking her to see specialists for a change,huh,how about that.

I'm happy to be there for her for a change,but I am even more exhausted than I normally am.She knows how easily I tire and is feeling guilty.I laughed and said "your telling me about feeling guilty for needing help?" 

I told her it is only for six weeks or so and we will manage.This has been a bad Summer for me. She is stressing about all that needs to be done for Winter that should be done by now and isn't.

I'll do the best I can,what else can I do?


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## Grumpy1

Dave, it will all get done, just not today cut yourself a break and hug your wife.  Happy B-day next week and I hope that your wife feels better soon and that you are okay too!


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## Ann Morgan

How am I feeling today ?  Confused. I have a Rheumatologist. I saw him back in 2007 for neck pain. I had Physical Therapy. Well, since then my neck pain and mobility has worsened. I am currently having Physical Therapy on my neck. My Rheumatologist wants to send me to a Pain Management Specialist so that I can get Botox shots in my neck. Has anyone ever had Botox in their neck ?  I know that doctors use it to treat migraines now. I don't even know if my health insurance company would cover Botox. I don't know if I even want to have the Botox shots in my neck. I guess I will call my Insurance Company next week. The Rheumatologist gave me the name of a Pain Management place but when I called they said they did not take my insurance there. Now I have to look for a Pain Management place all by myself.....or have my Insurance Company look for one when I call them about the Botox ?  Maybe I can still go to a Pain Management place but have some other sort of treatment for my neck other than Botox ?  I want relief for the left side of my neck, but at what cost ?  Botox is dangerous, and then if my insurance really does cover part of it, what part would I financially be responsible for ? Well, I am tired thinking about it now. : - 0


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## afidz

The beautiful thing about pain management clinics is that they don't have any limits as to how they can treat your pain. If you are nervous about Botox, tell them and they can approach it differently. You don't have to get anything you don't want to. In the end, its your body and you are the only one who knows whats right. You have to be referred to a pain management clinic, so I would call the rhuemy back and ask them to refer you to a different one, they should have no problem. Also, in re: to insurance covering Botox, if it is billed as medically necessary (not for vanity purposes) then insurance should cover it. I hope you start getting everything resolved, I know it seems like you are being given the run around right now, but it will all work out in the end.


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## Sherada

I'm feeling okay today... stomach feels fine but for the past few weeks i've been having on and off LOUD stomach noises and gurgaling... not sure if anyone else experiences this.  I've had it on and off throughout my life but not in the past two years or so... not sure why the sudden need for my stomach to speak up but its loud and proud people accross the room can hear it... its really embarassing especially when i have to be at work and in quiet meeting rooms :\ ... i'm sure everyone is thinking im about to shit my pants but I'm not it just has a mind of its own and i dont know what i can do to make it stop, it doesn't seem to be effected by what i eat or time of day... it just starts up... I guess things could be worse...but it makes me really self conscious and gives me anxiety about going to quiet places


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## Ali29

I was referred to a pain clinic and went about 1 1/2 weeks ago with a follow up this coming Wednesday.  The doctors (yes, 2 of them saw me) and we discussed a lot.  I felt very comfortable with them and both of them know my GI very well.  At the end of the visit they said they were calling my GI to discuss - more out of the box ideas on my disease as I have so much going on and still miserable.  I really liked them and the next day was my GI appt and he said he had spoken to the doctors already!!  Nice to have doctors on top of things.  We are trying some different pain meds.  I have a little hope.


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## Ann Morgan

Sherada: When I am having my teeth cleaned by the dental hygienist I can always hear her stomach growling !  

I would not worry about what your co-workers think.  A lot of folks have had diarrhea in their pants before but they would never tell anyone about it. Those people are not perfect, so they should not judge you. 

Okay, so I was at a little Circle K gas station one day, a few years ago, and I really, really had to pee. The clerk told me that the restrooms there were not for customers, only for employees. OMG !  Also, my gas tank was empty. So, while I was pumping my gasoline I was peeing in my pants. I couldn't hold it !  Other folks were at the gas pumps too. I kept thinking...."they can see me" !  I am sure that they saw me pee in my pants. Well, there was nothing I could do about it. I had to pee. I couldn't control what the other people were thinking about me. Well, that is just my little story.

Take care of yourself. Hope your "noises" stop soon. : - 0.


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## Ann Morgan

afidz: Thanks for the info.  I still have a few Physical Therapy appointments left for my neck. I am going to wait until all of those visits are done with before I choose a Pain Management Specialist. I have a little time to locate a Specialist that is in my end of town and one that takes my insurance. If I do decide on Botox I will call my insurance company first before I get the injection, just to make sure they cover it. 

: - )


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## Polaris

I feel like Crohn's can eff off today.


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## Tamera

Hey I am new to this group, today was horrible! Had to go to urgent care for thrush mouth!

Still in the process of trying to get a diagnosis!
Next step SBFT,Sigmoidoscope,double balloon endoscopy and pill cam!


Love dogs by the way, I have two! Rescue dog and a full blooded pit! They watch over the grandkids like nannies!


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## Ann Morgan

Tamera: Welcome !  I am fairly new to this website. The folks here have a lot of knowledge and information on just about anything that has to do with Crohn's. I am so sorry that you had to go to Urgent Care, that sucks !  I hope that you find a diagnosis soon, sounds like you are getting the proper testing in order to find out what is going on.
The tests that I have had in the past are: upper GI, lower GI, Flexible Sigmoidoscopy, Colonoscopy and Endoscopy.


*Ulcerative Colitis  - diagnosed 2006, have had symptoms since 1997
Acid Reflux
Anal Fistulectomy 1992
Gallbladder out in 1995
Diarrhea started in 1997
Rectal Abscess 2002
Rectal Abscess 2009
Started having constipation in May 2014
Had a colonoscopy in August 2014 and it came back "normal"
Still taking Questran Powder and Lialda
I am going to talk to my new doctor about a Bile Malabsorption test next month*


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## BlackButterflies

I was hoping to sleep in today but I guess it isn't in the cards. Woke up completely soaked in a full body sweat and shivering again.  Sigh.  I can't seem to get warm now.  Is anyone else constantly cold no matter the weather or the clothing you pile on?


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## duh panda

BlackButterflies - 90 degree weather today and I was rocking jeans and two long sleeve shirts - felt completely comfortable while outside otherwise always cold regardless of layering - oddly enough I find it's a bit easier to regulate heat at night following night sweats if I'm wearing no clothing (easier to get dry again imo) and just switch out blankets throughout the night keeping myself wrapped burrito style with additional blankets on top.  childhood me would probably be proud I don't sleep like a normal adult and still "indulge" in late night blanket fort construction.


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## lisadc1

Not great today...kidney stone & C-Diff, not sure which is worse. So many crohns related problems the last month, infections. Was surprised to be sent home yesterday. Waiting on phone call from GI...So sick...


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## Polaris

The fatigue is overwhelming this morning. My iron infusion is this Thursday and can't come soon enough. I feel guilty for, once again, not making it to work.


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## Gram214

Stellarjess..don't feel guilty for missing work. Any one of your co-workers would do the same if they felt like you. I used to practically crawl to the time clock in the mornings at my job. I was a CNA in a nursing home night shift for 15 years. Taking off work was a major no- no there. No sympathy when dealing with that corporation. At times my knees would look like cantaloupes and if it wasn't for the residents bathrooms..which BTW we were not allowed to use...ughhhh !! It would have gotten very ugly.  I finally had enough and had to apply for SSDI . I was granted that after the first try and even though it's not much it's better than nothing . I shudder at the thought of them reviewing my case . I imagine with the funds running out as we're told constantly by the media it would be easy for them come up with a way to say "NO MORE" . !!
  I never had an iron infusion..they give me packed red blood cells when I get badly anemic ? I too am having that overwhelming fatigue and just had my Remicade infusion last Monday. I get sick on iron pills..you too ?  
I can't imagine working anymore. I struggle just doing basic things here at home . Only outlets I have are grocery shopping (even that is starting to be too much my feet kill me less than half way through ) and Dr. appt.s . I would have someone shop for me but it's the only chance I get to see the world. Pretty pathetic...huh ?
 I'm older yes ..but I have friends who are my age and enjoying the freedom of retirement and I can't help but feel a tad jealous at times. If they only knew how lucky they are to be healthy...to trade places for a day would do it for them. Sigh 
 Hang in there girl better days ahead..?  Sorry for the long story.


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## Polaris

Gram214 said:


> Stellarjess..don't feel guilty for missing work. Any one of your co-workers would do the same if they felt like you. I used to practically crawl to the time clock in the mornings at my job. I was a CNA in a nursing home night shift for 15 years. Taking off work was a major no- no there. No sympathy when dealing with that corporation. At times my knees would look like cantaloupes and if it wasn't for the residents bathrooms..which BTW we were not allowed to use...ughhhh !! It would have gotten very ugly.  I finally had enough and had to apply for SSDI . I was granted that after the first try and even though it's not much it's better than nothing . I shudder at the thought of them reviewing my case . I imagine with the funds running out as we're told constantly by the media it would be easy for them come up with a way to say "NO MORE" . !!
> I never had an iron infusion..they give me packed red blood cells when I get badly anemic ? I too am having that overwhelming fatigue and just had my Remicade infusion last Monday. I get sick on iron pills..you too ?
> I can't imagine working anymore. I struggle just doing basic things here at home . Only outlets I have are grocery shopping (even that is starting to be too much my feet kill me less than half way through ) and Dr. appt.s . I would have someone shop for me but it's the only chance I get to see the world. Pretty pathetic...huh ?
> I'm older yes ..but I have friends who are my age and enjoying the freedom of retirement and I can't help but feel a tad jealous at times. If they only knew how lucky they are to be healthy...to trade places for a day would do it for them. Sigh
> Hang in there girl better days ahead..?  Sorry for the long story.


Thank you for your reply Gram214. I can't imagine being a CNA with this disease! You are a hero for doing it!

I don't tolerate iron supplements at all and/or haven't found one that works quickly enough. My ferritin and iron saturation are the problem which is why I'm getting iron infusions instead of a transfusion (my hemoglobin is normal). 

Thank you so much for the kind words, I hope you hang in there, too.


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## neohic

Already feeling grumpy today and I haven't even started work yet. I've got a scan on Friday morning that I get to drink a bunch of barium contrast. Last night I got a call from the hospital to ask a bunch of questions and give me prep instructions... didn't sleep all night just knowing what's coming in a couple days. Now I made the mistake of searching around looking for tips on getting the contrast down and it's just making my stomach turn. Not looking forward to this at all.


----------



## valleysangel92

Neohic - Try not to stress too much, i know it's easier said than done but honestly the more you stress about it the worse the experience will be. In my experience, the barium type contrasts actually aren't that bad, I find them a walk in the park compared to the preps we have for scopes. Remember that google etc are full of bad stories because when people have a bad time they go online to try and find support or people with similar experiences, but when people have a good experience they just get on with things and don't write about it because they don't feel they need support . Take deep breaths, remember that however horrible it is it's just one day, by Saturday it will all just be a memory and you'll be able to move on  and hopefully within a couple of weeks you'll have some answers and a way to progress.


----------



## neohic

^ Thanks valley. I think the worst part of it is I already know what to expect. Same test I had a couple years ago. I think that I'd rather be surprised at how awful it tastes rather than already knowing before showing up.


----------



## valleysangel92

I know what you mean, I have a scope coming up sometime soon and knowing how horrible the prep will be is making me nervous, but think of it this way, you got through it last time, it might of been horrible, but you did get through it. I got myself a little nervy and scared before my last MRI, because I knew that the first one I had I really struggled with the contrast, but it turned out that the second one was better, same contrast but much less of it to drink, they gave me one jug that was about a litre, I drank about 3/4 of it and they let me stop and see if that was enough to get the images, it was (I have a tiny frame and had some bowel removed).. So it turned out I got worried when I didn't need to. You will get through it and you will be alright, deep breaths, be kind to yourself. Promise yourself a treat once your done, for example,  I had my last MRI as an inpatient in hospital, and my boyfriend traveled 50 miles to spend the afternoon /evening with me and took me down to the hospital cafe to have a meal (I'd not been allowed off the ward before that because I'd been too poorly)  and knowing he'd be there when I got out of the scanner made it a lot easier. You could promise yourself a movie you've been wanting, a meal you really like, a take away, anything that you enjoy.


----------



## afidz

I feel...lost. I don't recognize who I have become. My pain has taken over my life. I have typed this response over and over again because I don't really know how to explain how I feel or how to validate it, if that makes sense. I look down at my hands and wrists and they are so swollen, I literally don't know the back of my hand. 
Good news is I was approved to start Remicade, I get my first infusion on Monday. I have a doctor appointment afterwards to go over all of the blood tests that my rheumy did 2 weeks ago. I am hoping that the blood work will answer a lot of questions and be able to give her a good place to start.


----------



## RowdyRowdy

Crohn's Disease. Eating away at our bodies one day at a time. I make a move, it produces a countermove. But I'm still here. Don't know about tomorrow, and had some crappy yesterday's, but I'm still here today and that is all anyone can ask for. Pooh Bear asked a Piglet, "What day is it?". And Piglet answered, "Well, it's today". "My favorite day", said Pooh Bear.


----------



## BlackButterflies

Three hours of sleep and I am manic as all hell.  I thought taking Pred in the morning around 9AM would help me sleep better at night.  Guess not.  Still haven't kicked this flare yet.  I had my one year anniversary of bleeding from my stomach/intenstines/rectum the other day and realized I have had less than 2 months this year without daily bleeds. Feeling super positive and pumped again though.  I feel like this time I will stop it and will go back to my normal functional self!  

I am job hunting.  I decided that I need to get a job in the same field but less physically exerting so I do not miss work.  I have been off for a month now, and my position has been filled and I have been demoted.  Before I left I was told I basically was not needed as I am anymore and if I end up in the hospital that's it.  Kind of a slap in the face but part of that is my fault for thinking that a company really values anyone anymore. At least that company.

Upwards and onwards, keep pushing forward.  Always move forward.


----------



## neohic

Confused and maybe a little upset. Had an MRI this morning... even got through choking down all three bottles of contrast... and I already got my results back. I guess it's good that things look as normal as they can, but I was honestly hoping to hear back that there was something definitively wrong. Been feeling real rotten for months now and was looking forward to hearing some kind of answer as to why. Not sure what's next now.


----------



## Gram214

neohic...awww..after being such a brave soul and drinking that yummy contrast then yet. Just don't let them tell you nothing is wrong..if you feel that bad there must be a problem they're missing. You know your body best ..hope you get to feeling better !


----------



## valleysangel92

Neohic - I'm sorry you've gotten no further. I understand how frustrating this is. My last MRI was clear,  after spending 2 weeks in hospital on IVs I wasn't amused either. However, this does not mean there is nothing wrong. Luckily my consultant also did fecal cal testing which did show inflammation, so we had evidence of a flare which allowed him to give me better treatment. 

Don't give up. Tests come back normal for loads of reasons. For example, you might have microscopic inflammation which would be enough to cause symptoms but would not show up on an MRI scan. When my MRI was clear,  my consultant merely used it as a way to say I could go home and didn't need surgery and wasn't at risk of a blockage, rather than as a sign nothing was wrong. 

Keep pushing your doctors, make sure they look further.


----------



## duh panda

For months I've been doing good managing the nightly pain that I experience from my crohn's. Usually I can get it into a cycle of sorts when i'm really good about keeping meal times and amounts consistent, taking meds at exact times every day etc. but tonight has been a piece of work. For the first time in a long time I was SCARED by the pain. Terrified even, and I hate how weak this fear can make me feel because I know I'll pull through, be fine, make it off the toilet and into my bed where I can pass out till it wakes me back up sometime in the morning.

Since moving back to live with my mom while sorting out medical logistics of moving and getting reestablished while in the middle of a flare 1000 miles away tonight was the first night I truly panicked when the pain hit. It was also the first night I dealt with the terror alone so to speak as while I have her support financially for as long as I remain under her roof there is minimal emotional/ mental support to help cope with moments like tonight. I simply know better to ask as when I do it simply causes more stress which = more pain/ struggle etc. It's simply been too long since i've lived with family and i'm not willing to put in the energy to retrain/ teach them on what it takes.

It certainly doesn't help that I've simply been missing my S.O. - who's been a more primary part of my fight with crohn's then my own family since point of diagnosis - and remained in CO to try to get everything setup so there's a home and stable foundation to return to.

Crohn's can F off tonight. I'm ready for my next dose of Entyvio like, now, as I have seen an overall slight improvement in lowered general pain for the first time in nearing a year and hope for the first time since what stability i had achieved since diagnosis started slipping as this flare started it's hold over 2ish years ago. I am hopeful, I don't just want to live - but want to live well and for the first time in a long time that looks possible, but i'm so over it all tonight. 

Wishing everyone the best tomorrow as you tackle the day!


----------



## neohic

valleysangel92 said:


> Keep pushing your doctors, make sure they look further.


Nervous for another round. Colonoscopy scheduled for next Thursday.


----------



## Ann Morgan

stelarjess said:


> The fatigue is overwhelming this morning. My iron infusion is this Thursday and can't come soon enough. I feel guilty for, once again, not making it to work.


What is an iron infusion? 
I had a blood transfusion in 2009.
I WAS taking two iron pills a day ( over the counter )
for several years until my new Primary Care Physician
said that my iron levels were okay and I did not
have to take the iron pills any longer !  If I end
up in the hospital for a blood transfusion I will
really be pissed off by this new doctor.
I am taking a B12 vitamin each day ( over the counter )
but I have had the injections in the past.
I also take a D3 vitamin each day ( over the counter )
and Fosamax ( prescription ) for my bones.

:ysmile:


----------



## Ann Morgan

Gram214 said:


> Stellarjess..don't feel guilty for missing work. Any one of your co-workers would do the same if they felt like you. I used to practically crawl to the time clock in the mornings at my job. I was a CNA in a nursing home night shift for 15 years. Taking off work was a major no- no there. No sympathy when dealing with that corporation. At times my knees would look like cantaloupes and if it wasn't for the residents bathrooms..which BTW we were not allowed to use...ughhhh !! It would have gotten very ugly.  I finally had enough and had to apply for SSDI . I was granted that after the first try and even though it's not much it's better than nothing . I shudder at the thought of them reviewing my case . I imagine with the funds running out as we're told constantly by the media it would be easy for them come up with a way to say "NO MORE" . !!
> I never had an iron infusion..they give me packed red blood cells when I get badly anemic ? I too am having that overwhelming fatigue and just had my Remicade infusion last Monday. I get sick on iron pills..you too ?
> I can't imagine working anymore. I struggle just doing basic things here at home . Only outlets I have are grocery shopping (even that is starting to be too much my feet kill me less than half way through ) and Dr. appt.s . I would have someone shop for me but it's the only chance I get to see the world. Pretty pathetic...huh ?
> I'm older yes ..but I have friends who are my age and enjoying the freedom of retirement and I can't help but feel a tad jealous at times. If they only knew how lucky they are to be healthy...to trade places for a day would do it for them. Sigh
> Hang in there girl better days ahead..?  Sorry for the long story.


You said so many things that I can relate to. I just started collecting SSD benefits as of January 2013. I am 54 years old and I have multiple physical issues and mental health issues too. I think I was told that I would be reviewed in three years ( not seven years like some people do ). If they think I can really work, then they are just wrong. I don't want to be homeless and if they take away my benefits I would be. I live alone and my parents are dead and I have no friends. My sister lives in another state and she already supported me once, financially, in 2012, when my Unemployment Benefits ran out and I had no health insurance. I could not ever ask her for any more assistance, she GAVE me the money the last time I needed help. She did not BORROW it to me. I don't have to pay it back.

I am tired every day too. But it is more than tired, it is fatigue. I am only 54 years old but I started to "not feel good" about 20 years ago. Little by little,over the years,my body and my brain just ran out of steam.

OMG, when you were talking about grocery shopping and doctors appointments I thought you were talking about me !  I am seeing five different Specialists for different things: Gastroenterologist, Endocrinologist, Orthopedist, Rheumatologist and Urologist. As far as the grocery store..... hey, Safeway.com has an online grocery shopping website in my area. I can order groceries online and have them delivered to my door !  It is the greatest thing ever for a person who may be fatigued or a person who cannot lift a lot of weight, or a person who cannot reach very high. I have to admit that I love the online shopping ( the fee is anywhere from $3.95 to $12.95 for each delivery ). But I cannot online shop all of the time because I really need to get out of my apartment as much as I can so that I don't get isolated and depressed. 

My sister has RA and she can do gardening and she can lift things.
I can't lift much weight at all. She must have some good medications.
I am getting Physical Therapy on my shoulders starting tomorrow.
I have osteoarthritis in them ?   I wish my doctors would just
all get together and just give me some pain medication of some sort.
My Rheumatologist IS recommending a Pain Management Specialist
for my neck problems. I have almost zero percent mobility moving
my neck up and down. And I have limited mobility moving my neck
side to side. I already had ten sessions of PT on my neck.
Rheumatologist is mentioning Botox injections. Yikes !
I will have to really think about that. I am going to wait
to see a Pain Management Specialist for a while since I am seeing
so many other doctors. Maybe after I finish my shoulder
Occupational Therapy I will look up a Pain Management
Specialist then. ( Okay, I have arthritis in my hips too ).
What the heck happened to me !

Sorry this is so long. Haven't written for ten days.


----------



## RowdyRowdy

I'm interested to find something out: what's the point of all this? Not asking this cynically or caustically.... But sincerely, one crohnnie to another. What's the point of colonoscopies, fistulas, sections, prednisone, hospital stays, colostomies, re sections, and biologics? Okay...go.


----------



## duh panda

For me the point of it all is to improve overall well-being (regarding the medical side of things and trying to keep the disease at an optimal point of functionality, which doesn't necessarily mean the textbook definition of remission for me). <- That is what I base my medical decision on - such as spending spare time researching/ learning about the human body, disease itself, and whether or not to keep pursing drug options vs. surgery etc.

As for the fistulas and actual symptoms/ having the disease itself - who knows. I know I've become a more resilient person for it - I've learned things such as how to manage pain, know my body, etc. that many don't try to discern until much later in life. An ability to perceive myself and all individuals as independent yet interconnected realizing asking for assistance isn't a negative. In many ways I think once the symptoms are under control it'll be like gaining time - the hospital stays, bed rest, night spent in instead of out are always well spend - my tool box is more complete in how having a disease like crohn's adds to rather then takes from my life compared to peers (that said, there's always a trade off). Also, maybe one day all of it will allow me to be there for others the way they've been there for me and offer the empathy and a bit of understanding/ guidance I desire rather then cold sympathy or pity that's often shown instead. 

So yep, there you have it. The point is what anyone chooses to make of the situation no matter what it may entail. 

Rowdy, what do you think is the point of it all? I think this is such a great question to ponder!


----------



## dave13

What's the point? Not to be flippant,it really depends on what day/moment you ask me. ie-just thinking about an answer to that question exhausts me today.I'm not usually at a loss for words.


----------



## nogutsnoglory

I agree Dave, it's so day by day, hour by hour, minute by minute really! Today I feel like I have the flu and it's from over exertion yesterday. Just thinking makes me exhausted!


----------



## Gram214

Hi all...the way I see it...I try and try to carry on mostly for my loved ones . Human loves and fur ones.      Also as bad as things get at times I know there's many who have it far worse . I at least don't have to watch my children or grandchildren die from disease or starvation  in front of my eyes . I;m lucky enough to have a roof over my head , food , a loving husband who stands by me always , my grown children who are all doing well, I have my sight, my hearing, and my mind ( at times) . Sooo much to be thankful for. 
  When I go out and about I at least try to smile at other people no matter how bad I'm feeling .  My wish for all of you who are feeling very poorly right now is to know that better days will come . God bless


----------



## Phil5813

Today I passed a lot of blood after breakfast. I got a huge craving for biscuits and gravy last night, so my mother and I cooked them up and added bacon bits to the gravy.

It was the best thing I had in a long time! It tasted SO GOOD...and the first round went through okay. But when I had leftovers for breakfast, it was punishing. Needless to say, that craving is gone.

We're gonna try stewed apples pretty soon as well.


----------



## syzygy

So frustrated today.  I had to be really on my game at work and it wasn't easy having to run off with D throughout the day.  I've been eating decently, managing stress decently, and whammo.   Grrr......


----------



## dave13

I do feel fortunate most days.Some days it is the non-disease issues,other facets of life, particularly medical expenses.  I feel so overwhelmed with debt at times.I worry.

I'll fight until my dying breath and appreciate what I have.I just get tired...


----------



## neohic

neohic said:


> Nervous for another round. Colonoscopy scheduled for next Thursday.


Prep starts tomorrow... not feeling great about this.


----------



## neohic

Hungry. Nothing but a clear liquid diet today when I'm used to small snacks throughout the day.


----------



## Gram214

Hang in there neohic. I understand completely...it's always feels like such a  long day but before you know it you'll be at the center having your little nap and you'll be waking up to "you're procedure is all through " .  Did you try a little beef broth ? The saltiness might offset your hunger a tad. Thinking of you..


----------



## neohic

Yup... tried broth and I think it just made things worse. I called to asked if coffee is fine to have and got the go-ahead. Seems to tide me over a little better but I'm not sure what I'll be doing with myself through the evening. Not used to caffeine all day. :eek2:

Counting down to 1:00 tomorrow.


----------



## Polaris

In a lot of pain today (and the past week or so). My family doesn't realize that pain changes you - yes I'm going to be cranky, it's impossible for me to pretend to be in a good mood when I'm doubled over in pain 30x/day. 

Also, please don't ask what's wrong, and then try to relate to my pain by stating you have a headache. (My fiance). I love my family but sometimes I just want to punch someone. 

/rant.


----------



## neohic

stelarjess said:


> ... My family doesn't realize that pain changes you ...


^This. My family is the same way that when I talk to them about it they just don't understand. Anytime they try and sympathize it always comes off as "had a terrible headache" or "remember when so-and-so broke his wrist?" or "so-and-so has been stressed out too". Just about every time I can respond with, "Yeah... but they got better."

Sorry for your pain today.


----------



## neohic

Had my colonoscopy this afternoon and I've got mixed emotions again. Kind of feels like my last MRI results when that came back looking pretty clean. My doctor seemed a little stumped by the whole thing too. He suggested peppermint oil to see if that'll calm things down.

Really was hoping that there would've been that "Oh! That's what it was all along!" moment...


----------



## indianhart

Boy can I relate to each one of you.  But we have to forgive them because they don't know how it is to live with this disease.  I have Crohns and have pain most days whether it's belly, joint, exhaustion.  This is the cross we have to bear and some days are better than others.  We can't ask people to understand because they just won't unless your one of us!  Let's do our best to enjoy each moment without pain (which for us may not be many).  We are very lucky to have a forum like this to come to and people can relate to us.  Try and have a good and painfree day all my Crohnies!!!


----------



## Tony H

pred has worked its magic on the cramps and d , but the joint pain is off the charts  , the doc had prescribed new pain meds palexia (tapentadol) hopefully they will give my aching joints some relief .


----------



## Ann Morgan

Gram: I LOVE WHAT YOU SAID !  When I am feeling really down ( physically and

mentally ) I make a Gratitude List ( either in my head, verbally or in writing ). 

Gratitude Lists are great things. Also, if you are feeling down, you can write down

any of your accomplishments or achievements ( from the past or from the present ).

The accomplishments can be what other people call "little things" but for us are

"big things".  When you think about your successes instead of your failures

you can change your thinking around for the better. I don't have the support

that you have ( human or furry ones ) , but I am trying to seek out support

from local organizations and programs within my community. My two cats 

have been gone now since 2009. They were my "forever friends" for 12 years.

My parents are both dead now. And my only sister lives out of state. It's 

really hard to cope on your own. I am hoping to find some friends in the

future. I believe there is a local Crohn's Support Group in my city, so I could

try to participate in that and maybe find some folks I can be friends with.

Thanks for listening. ( PS: I was replying to what you wrote on 10-6-14 ).


----------



## Ann Morgan

stelarjess said:


> In a lot of pain today (and the past week or so). My family doesn't realize that pain changes you - yes I'm going to be cranky, it's impossible for me to pretend to be in a good mood when I'm doubled over in pain 30x/day.
> 
> Also, please don't ask what's wrong, and then try to relate to my pain by stating you have a headache. (My fiance). I love my family but sometimes I just want to punch someone.
> 
> /rant.



My sister doesn't understand either.
I was recently at a bank. All of a sudden I felt a strong urge to have a bowel movement. I was in a panic because banks do not have restrooms. I walked as fast as I could to the Verizon store right next to the bank ( same attached building ). I politely asked the employee standing at the counter if I could use their restroom and I said that this was an emergency !  He was kind enough to allow me to use their restroom ( which is not open to customers ) , in the back of their store. Thank God for that guy.


----------



## UnXmas

stelarjess said:


> In a lot of pain today (and the past week or so). My family doesn't realize that pain changes you - yes I'm going to be cranky, it's impossible for me to pretend to be in a good mood when I'm doubled over in pain 30x/day.
> 
> Also, please don't ask what's wrong, and then try to relate to my pain by stating you have a headache. (My fiance). I love my family but sometimes I just want to punch someone.
> 
> /rant.


I'm not sure. Pain definitely changes you, but sometimes I think friends and family can't win. I know I sometimes get annoyed if they try to sympathise, but other times I get annoyed if I'm sick and they don't respond. I think you have to tell people what kind of reaction you'd like to have at any given time - e.g. "can you just let me have some time to myself for a bit?", "can you help me take my mind off the pain", etc. It's hard for people to know what to do, especially when they can't relate. Trying to say they relate, even if they reference some really minor ailment that pales in comparison to what you're going through, may be the only thing they can think of to say.


----------



## lilac

totally rubbish. Managed to get down to 10mg pred which is when I typically flare and need hospital admission : / Determined its not happening this time. Mouth is killing me with ulcers and thrush. I'll spare you the details of the other end :ymad: Hugs to everyone feeling crappy


----------



## BlackButterflies

I am too exhausted and I shouldn't let this bother me but it is so here I am to get it out - thanks to this forum for being here. Went to my first holiday extended family meal since diagnosis.  Zero items I could eat.  Everyone laughed and made jokes the entire time.  I ate some of my safe foods before because I was afraid there would be nothing so at least I wasn't starving.   It's so disappointing. I was offered raw carrots and celery as an alternative.  I never thought I was a good liar until this meal - I smiled and laughed with them and watched them all eat.  I guess it was wrong to assume they would have a few safe foods when the hosting family is my own and knew my food limits and certain safe foods.  Is this a simple lack of caring or sheer idiocy because I just don't get it.  I've seen them go out of their way before when my brother thought he was celiac.   It was a very cold family get together - I did not feel welcome or wanted there in the slightest.  I got a lot of looks from certain family members and the one child that repeats everything his mother says told me I need to stop over-exaggerating.  She was the hostess.  I really need to not be bitter about this and just focus on my health.  I felt like a complete stranger for the first time surrounded by another family.  I don't want to go back.


----------



## RowdyRowdy

Butterflies....indeed. I've both ostracized and been ostracized by my family due in no small part to this disease. I am thankful my wife and kids know how awful  Crohn's really is and if it were not for them, I'd have no one to walk through this with me.


----------



## Tamera

Today has been horrible!
The small bowel follow through should've only taken 2 hours mine took 4, because I have some type of stoppage in my small intestines.
The fluroscopy had to be pressed down on my stomach which was already at a pain score of 8 and I had to miss work again! Ugh

Thank God and Clinton for FMLA! I need the job for the insurance.
Finally my thrush mouth is calming down but I have yet another test before Crohn's disease will be diagnosed.:redface:


----------



## UnXmas

BlackButterflies said:


> I am too exhausted and I shouldn't let this bother me but it is so here I am to get it out - thanks to this forum for being here. Went to my first holiday extended family meal since diagnosis.  Zero items I could eat.  Everyone laughed and made jokes the entire time.  I ate some of my safe foods before because I was afraid there would be nothing so at least I wasn't starving.   It's so disappointing. I was offered raw carrots and celery as an alternative.  I never thought I was a good liar until this meal - I smiled and laughed with them and watched them all eat.  I guess it was wrong to assume they would have a few safe foods when the hosting family is my own and knew my food limits and certain safe foods.  Is this a simple lack of caring or sheer idiocy because I just don't get it.  I've seen them go out of their way before when my brother thought he was celiac.   It was a very cold family get together - I did not feel welcome or wanted there in the slightest.  I got a lot of looks from certain family members and the one child that repeats everything his mother says told me I need to stop over-exaggerating.  She was the hostess.  I really need to not be bitter about this and just focus on my health.  I felt like a complete stranger for the first time surrounded by another family.  I don't want to go back.


Would you feel to awkward bringing your own food to future such occasions? Or skipping eating altogether? My close family understands and caters to my diet very well (my mum is more paranoid about my stoma blocking than I am), but I have gone out to many meals with acquaintances where I simply didn't eat. Even if suitable food was available, in the days before I had a stoma, eating anything could make me need the bathroom and always made me feel bloated and horrible, and I found it just wasn't worth it to eat for the sake of appearing normal.

Christmas is coming up and I plan to eat my Christmas dinner with my family, but besides that I have no plans to eat with others. They will either understand or they won't and may think I'm weird, but at least I won't be any more physically uncomfortable than I need to be.

I'm very sorry it's your family and not mere acquaintances who put you through this though. :hug:


----------



## UnXmas

Today, I've run out of codeine, so I feel ill and miserable, even though it's my own fault for not pacing my doses properly.


----------



## lisadc1

Let's add a thyroid not working to my list of issues! Why not?!? >.< 
My body is so messed up...


----------



## syzygy

Ann Morgan said:


> Gram: I LOVE WHAT YOU SAID !  When I am feeling really down ( physically and
> 
> mentally ) I make a Gratitude List ( either in my head, verbally or in writing ).
> 
> Gratitude Lists are great things. Also, if you are feeling down, you can write down
> 
> any of your accomplishments or achievements ( from the past or from the present ).
> 
> The accomplishments can be what other people call "little things" but for us are
> 
> "big things".  When you think about your successes instead of your failures
> 
> you can change your thinking around for the better. I don't have the support
> 
> that you have ( human or furry ones ) , but I am trying to seek out support
> 
> from local organizations and programs within my community. My two cats
> 
> have been gone now since 2009. They were my "forever friends" for 12 years.
> 
> My parents are both dead now. And my only sister lives out of state. It's
> 
> really hard to cope on your own. I am hoping to find some friends in the
> 
> future. I believe there is a local Crohn's Support Group in my city, so I could
> 
> try to participate in that and maybe find some folks I can be friends with.
> 
> Thanks for listening. ( PS: I was replying to what you wrote on 10-6-14 ).


Ann, I love the point on gratitude.  Our family does "Thankfuls" every night before meals as a way of bringing some positive focus and awareness of the things that are going well in our lives.  It's so easy for me to obsess on the things that are not going right and it's a good thing for me to have the daily practice of mindfully noticing the good things.  

Hmm...I might just start a new thread on this...


----------



## Phil5813

I agree about the pain. I've developed a couple "ticks" (like drumming along with my teeth  ) that help me keep my mind occupied, to the point that they've become autonomous. With or without the anger part of it, the pain is debilitating to the point that I'm too worn out to even speak with a clear voice...

Anyway, I've been doing really well with an elimination diet, but yesterday I caved and ate three McDonalds hamburgers, nothing but the patty and bun. Like the biscuits and gravy, they were delicious, but I paid the price today! I read on here that some people don't react to plain McD burgers, which _completely_ boggles my mind.

Now that I think of it, maybe those other people weren't in a flare when trying the burgers...


----------



## Polaris

Very defeated due to my GI making me feel like absolute shit today.


----------



## RowdyRowdy

McDonalds absolutely crushes my tummy.


----------



## dave13

BlackButterflies-I'm sorry to hear about you not feeling welcome at a family gathering.My family has been cold and distant since my resection and diagnosis 11-13.I expected family support but got quite the opposite.I don't understand why.

I have had three operations and I have a sister that has not even contacted me to see how I am doing.I reach out but get voice mail and answering machines.Now I just keep to myself.I have not written them out of my life.If they want to talk,they know how to get a hold of me.I don't look forward to the holiday season at all.

Thanksgiving week will be one year since my resection,the Monday of Thanksgiving week was my resection.I don't want to spend Thanksgiving day with family that didn't visit me in the hospital.I feel it would be a lie to say I'm thankful to be with them on that day.I have plenty to be thankful for,but lack of family compassion is not one of them.

I love my family.I just don't want to be with them.

Thanksgiving is two months away and I already feel the anxiety.One day at a time,right?

A little cheese with my whine? :ylol:


----------



## IofNewt

Defeated. Nothing stops the bathroom trips... not even not eating.

I am so sore and so tired and weak, I can barely function.


----------



## DJW

Thinking I need a psychiatrist.

:shifty-t:


----------



## UnXmas

Today I am worrying about my weight, as usual. I need to get it up in order to avoid hospital again, but I'm so worried about eating too much.

Also saying goodbye to visiting relatives today. Life just feels miserable because everyone else goes on, moving on with life, doing normal things.

Physically: ok as I have a new codeine prescription. Tired, debating whether to have an after-lunch nap right now, though I did sleep a lot better last night, no sleepwalking, which I'm very glad about. Getting awful hot flushes from prednisone (at least I know it's powerful and it's kicking in).

And I'm very pleased I've hopefully solved the problem of my leaking stoma by switching back to convex bags. I'll be pleased if this is true because it means I've solved it without having to make a long trip to the hospital to see the stoma nurses. It feels more secure with a convex bag, and I find them easier to get on right.


----------



## UnXmas

DJW said:


> Thinking I need a psychiatrist.
> 
> :shifty-t:


Any particular reason?


----------



## DJW

I haven't felt 'normal' in years.


----------



## UnXmas

Today I feel good that I slept well again. But need a nap now. Stressing over my weight - I stuffed myself with high-calorie foods yesterday because my weight had dropped, and felt awful. Today I ate food I felt like, and felt better about it, but much was low-calorie. Then again, even if I stuck with high-calorie foods and stuffed myself, I might lose weight anyway.


----------



## chuckmya

You know, this is the best I've felt in years!!! I have been undiagnosed for years so was not on any meds of any sort for the past 16 years. So finally comes a diagnosis after a lot of pushing and not taking no for an answer! So consequently was started on Entocort  and Humira! Will start Entocort taper this week. I didn't really realize how miserable I have been all these years! I now have energy to do things, including exercise and cleaning my house! Just thought it was the aging process that was causing all my fatigue! My energy level is back and I feel great! Hope it continues!!!!:ylol::ylol:


----------



## snipars

Well today I started Entocort because of weight loss, had a slight feeling of nausea but it went away. Everything is going pretty alright so far!


----------



## sammyb22

snipars said:


> Well today I started Entocort because of weight loss, had a slight feeling of nausea but it went away. Everything is going pretty alright so far!


Eat before taking, even just a glass of milk will help


----------



## UnXmas

chuckmya said:


> You know, this is the best I've felt in years!!! I have been undiagnosed for years so was not on any meds of any sort for the past 16 years. So finally comes a diagnosis after a lot of pushing and not taking no for an answer! So consequently was started on Entocort  and Humira! Will start Entocort taper this week. I didn't really realize how miserable I have been all these years! I now have energy to do things, including exercise and cleaning my house! Just thought it was the aging process that was causing all my fatigue! My energy level is back and I feel great! Hope it continues!!!!:ylol::ylol:


Glad to hear from someone on this forum with good news! :ghug:

Steroids can definitely give you energy! I feel so well when I'm taking them.


----------



## UnXmas

Today I am: Getting hot flushes from prednisone; Looking forward to seeing visiting relatives later and having something to take my mind off things; Trying to eat and eat enough to gain some weight.


----------



## UnXmas

UnXmas said:


> Today I am: Getting hot flushes from prednisone; Looking forward to seeing visiting relatives later and having something to take my mind off things; Trying to eat and eat enough to gain some weight.


Pretty much an exact repeat today.

The weather is all dark and windy and rainy and Autumnal, which I like. It's ridiculously warm for the time of year though, I wish it was colder. It makes me terribly nostalgic in a sad way though, for past Winters when things were normal.


----------



## syzygy

DJW said:


> I haven't felt 'normal' in years.


DJW, sorry to hear that things are rough.  I started seeing a therapist around the time I was getting worked up with my diagnosis to deal with adjustment issues.  It's been really helpful to be able to gnash my teeth, talk about fears about starting meds, and be able to openly talk through issues that would just worry my family and friends.  

I think that psych meds can be amazing especially for adjusting mood and one's ability to engage life.  They don't make real-life problems (i.e., Crohn's) go away though and counseling/therapy can help for support, problem-solving, and acceptance there.


----------



## sully1102

A week ago today I had minor surgery to dilate a stricture, drain a peri-rectal abscess, and place a seton to help with a fistula. For the past two months I had been dealing with increasing pain from the abscess, to the point that I finally had to ask for a prescription of pain killers just so I could attend a wedding.

But, the surgery has delivered on it's promises. Despite some tenderness around the seton, I'm pain free. My bowel movements are exactly what every Crohn's patients wishes for on a daily basis, and I'm seeing other benefits like a renewed appetite.

Today is a good day. It's great when treatments give such immediate results.


----------



## lilac

out of hospital yesterday - tired from another blast of steroids. Back to tapering, still can't eat right and feel like my colons never gonna calm down. Surprisingly upbeat though :tongue must be all thr drugs I'm now prescribed. Oh and now on humira weekly!


----------



## syzygy

Feeling a bit demoralized myself.  Remicade start was fine, but four days later, I get my first partial obstruction in 6 months.  I was really pretty panicky at first, but now just "blah..."


----------



## DJW

Really sorry syzygy. Obstructions are terrible.


----------



## UnXmas

Going to try to have another day without codeine (yesterday I tried and failed). Need to make sure I'm on track with my weight for when I get weighed at the doctor's tomorrow, not quite sure how I'm going to manage that yet. Also feeling pretty bored, but that's probably because without the codeine I feel to rubbish to do much or concentrate on anything. :yfrown:


----------



## syzygy

3 days of D since the obstruction and I've been up and on the pot more than hourly for the past 4 hours.  This is not normal for me and I can't believe it's right after starting Remicade.  I have to try to get into the doc today.  I want to cry.


----------



## UnXmas

I managed ok with not taking codeine yesterday. I've taken a little today, to stop withdrawal. I'm hoping that when I eat lunch the weight of the food will mean I've not dropped weight when I weigh this afternoon!


----------



## sammyb22

sick of feeling sick, sick of waiting, sick of it all at this point. Why should someone have to constantly wait for the next step. My doctor is such a turd


----------



## neohic

For the first time in a while I can say that today I feel... okay. Been keeping busy working on my shop lately and I think it's been keeping my mind off of things. It was a nice change.


----------



## Ann Morgan

neohic said:


> Had my colonoscopy this afternoon and I've got mixed emotions again. Kind of feels like my last MRI results when that came back looking pretty clean. My doctor seemed a little stumped by the whole thing too. He suggested peppermint oil to see if that'll calm things down.
> 
> Really was hoping that there would've been that "Oh! That's what it was all along!" moment...


I know how you feel !   My Ulcerative Colitis symptoms changed drastically in May 2014. My old GI was not on my new health insurance plan. I had to find a new GI and then I had a colonoscopy in August. He said the colonoscopy came back normal. My new doctor said to discontinue my medications. SAY WHAT ! I had diarrhea for 17 years and I have been constipated since May of this year. My medications are two Questran Packets a day and two Lialda pills a day. I have been on these medications for a while now, especially the Questran. If I don't take the Questran at all, I get REALLY sick. Since May, if I take TWO Questran Packets a day I get constipated. So basically right now I am being my own doctor. I am experimenting with taking one Questran Packet a day instead of two and so far I am having bowel movements each day. I am not having terrible diarrhea or uncomfortable constipation. I occasionally have bloating and cramping and lose bowels, depending on what I ate.  And I am still taking the Lialda too because I still have some pills left in my pill bottle. I don't care if the doctor says my colonoscopy is normal, I cannot quit taking the Questran. If my colon is "OK" then why would I get sick if I quit the Questran. I meet with him in November. I am going to ask for a Bile Malabsorption test. If I don't get a good vibe from this new doctor after my next visit, I am going to change doctors for sure. ( PS: My current GI doctor said to take my current medications "as needed".  Well I DO need them ! ).
Thanks for listening.


----------



## Ann Morgan

indianhart said:


> Boy can I relate to each one of you.  But we have to forgive them because they don't know how it is to live with this disease.  I have Crohns and have pain most days whether it's belly, joint, exhaustion.  This is the cross we have to bear and some days are better than others.  We can't ask people to understand because they just won't unless your one of us!  Let's do our best to enjoy each moment without pain (which for us may not be many).  We are very lucky to have a forum like this to come to and people can relate to us.  Try and have a good and painfree day all my Crohnies!!!


I have Ulcerative Colitis, Arthritis and I am tired every single day. I cannot accept that I am going to feel like this every single day for the rest of my life. There must be SOMETHING that someone in the medical field can do for me. I am going to see my Primary Care Physician on October 27th to talk to him about my fatigue. My sister also has fatigue and she has RA, in addition to other health problems. I am going to have my PCP check my iron levels, my B12, my thyroid levels and my Glucose. I will go nuts if I have to be tired/exhausted/fatigued ALL of the time. I would like to have at least one day, every once in a while, where I feel awake and somewhat energized. This fatigue effects every aspect of my life.


----------



## Ann Morgan

lisadc1 said:


> Let's add a thyroid not working to my list of issues! Why not?!? >.<
> My body is so messed up...


I am the same way. I have so many things wrong with me that I get totally frustrated. I have a list in my purse with all of my health issues listed on it so when I see a new doctor I can just whip that list out of my purse and hand it to them. I also have a detailed medication list and a list of surgeries. I just hand them all of my papers and they photocopy them or scan them into their computers. I may get a few odd looks when I pull out my lists, but I don't care. They don't give me adequate room on the new doctor forms to give them the information that they need. I am 54 years old and I take many medications. I have a 74 year old Aunt that takes no medications at all. What's up with that ! :-0


----------



## Ann Morgan

Phil5813 said:


> I agree about the pain. I've developed a couple "ticks" (like drumming along with my teeth  ) that help me keep my mind occupied, to the point that they've become autonomous. With or without the anger part of it, the pain is debilitating to the point that I'm too worn out to even speak with a clear voice...
> 
> Anyway, I've been doing really well with an elimination diet, but yesterday I caved and ate three McDonalds hamburgers, nothing but the patty and bun. Like the biscuits and gravy, they were delicious, but I paid the price today! I read on here that some people don't react to plain McD burgers, which _completely_ boggles my mind.
> 
> Now that I think of it, maybe those other people weren't in a flare when trying the burgers...


Sometimes I do the same thing !   I will get a Big Mac from McDonalds or some tacos from Taco Bell or a sandwich from Arby's or chicken from Kentucky Fried Chicken or even the tacos from Jack In The Box. Recently I even bought a few donuts from Dunkin Donuts. I just miss food that has FLAVOR.  What triggers bad symptoms for me is greasy foods. It is good that I bring these "treats" home and eat them in my apartment because I would not want to actually be eating these foods at the restaurants because I may be running for the nearest restroom right then and there. : - 0  I don't think I will ever be able to eat food with flavor without paying the price. : - (


----------



## Ann Morgan

UnXmas said:


> Today I feel good that I slept well again. But need a nap now. Stressing over my weight - I stuffed myself with high-calorie foods yesterday because my weight had dropped, and felt awful. Today I ate food I felt like, and felt better about it, but much was low-calorie. Then again, even if I stuck with high-calorie foods and stuffed myself, I might lose weight anyway.


I have lost 30 pounds this year and I believe it is because of my Ulcerative Colitis symptoms changing back in May 2014. I was not trying to lose weight but I lost 20 pounds in 7 weeks after having my symptoms change. Then I lost another 10 pounds in the months following. During the past month I have maintained my weight. I am obese and my doctors are happy about the weight loss. My thyroid doctor wants me to lose another 20 pounds. I keep trying to tell these doctors that I am losing weight but I am not trying to lose weight. I guess they don't care HOW I lose it, just so I lose it. I don't feel any better whatsoever after losing the weight. I don't feel healthier or happier. I am still wearing the same clothes, but the clothes are just baggy. : - 0


----------



## Ann Morgan

chuckmya said:


> You know, this is the best I've felt in years!!! I have been undiagnosed for years so was not on any meds of any sort for the past 16 years. So finally comes a diagnosis after a lot of pushing and not taking no for an answer! So consequently was started on Entocort  and Humira! Will start Entocort taper this week. I didn't really realize how miserable I have been all these years! I now have energy to do things, including exercise and cleaning my house! Just thought it was the aging process that was causing all my fatigue! My energy level is back and I feel great! Hope it continues!!!!:ylol::ylol:


I am so happy that you have found the treatment that works for you !
It gives the rest of us hope.:dance:


----------



## Ann Morgan

sully1102 said:


> A week ago today I had minor surgery to dilate a stricture, drain a peri-rectal abscess, and place a seton to help with a fistula. For the past two months I had been dealing with increasing pain from the abscess, to the point that I finally had to ask for a prescription of pain killers just so I could attend a wedding.
> 
> But, the surgery has delivered on it's promises. Despite some tenderness around the seton, I'm pain free. My bowel movements are exactly what every Crohn's patients wishes for on a daily basis, and I'm seeing other benefits like a renewed appetite.
> 
> Today is a good day. It's great when treatments give such immediate results.


CONGRATULATIONS !  :dusty:


----------



## DJW

I had a great day. Saw some friends I hadn't seen in a while. Two married couple friends have daughters. One is 5 weeks the other is a year. Gruff Dave becomes a big Teddy bear with these two little angles. The little one fell asleep in my arms and the other just played cute with me the whole time. I'm good to do battle again.


----------



## UnXmas

Totally despairing about how to get my weight up to avoid hospital.


----------



## UnXmas

But doing ok without codeine.


----------



## UnXmas

Ann Morgan said:


> I have Ulcerative Colitis, Arthritis and I am tired every single day. I cannot accept that I am going to feel like this every single day for the rest of my life. There must be SOMETHING that someone in the medical field can do for me. I am going to see my Primary Care Physician on October 27th to talk to him about my fatigue. My sister also has fatigue and she has RA, in addition to other health problems. I am going to have my PCP check my iron levels, my B12, my thyroid levels and my Glucose. I will go nuts if I have to be tired/exhausted/fatigued ALL of the time. I would like to have at least one day, every once in a while, where I feel awake and somewhat energized. This fatigue effects every aspect of my life.


Have you ever been prescribed prednisone? I'm sure no doctor would prescribe it to treat fatigue, but if you ever need to be on it anyway, it may really increase your energy as a side-effect. Unfortunately it will most likely cause many side effects you don't want as well though.


----------



## UnXmas

> I have lost 30 pounds this year and I believe it is because of my Ulcerative Colitis symptoms changing back in May 2014. I was not trying to lose weight but I lost 20 pounds in 7 weeks after having my symptoms change. Then I lost another 10 pounds in the months following. During the past month I have maintained my weight. I am obese and my doctors are happy about the weight loss. My thyroid doctor wants me to lose another 20 pounds. I keep trying to tell these doctors that I am losing weight but I am not trying to lose weight. I guess they don't care HOW I lose it, just so I lose it. I don't feel any better whatsoever after losing the weight. I don't feel healthier or happier. I am still wearing the same clothes, but the clothes are just baggy. : - 0


I'm so sorry your doctors aren't taking your weight loss seriously. My doctors don't care how much it harms me to eat more and gain weight. Recently I was hospitaliised to gain weight and they made me eat and eat and eat. My intestine blocked and perforated, and the surgeon who saved me said it had happened because I'd been eating so much, my digestive system couldn't take it. But now the doctors are saying what they said before: "eat, eat, eat, gain weight" even though they know it nearly killed me. One also kept me on TPN (nutrition into the blood stream) when I clearly had an infection from the central line that was delivering it. Again, a surgeon stepped in and saved me. Some doctors are just obsessed with weight, whatever the cost and whatever dangers it may be hiding.

I also understand what you mean about not feeling any better even when your weight is technically "healthier". When I was a healthy weight I felt awful, and eating more always makes me sicker. But when I'm a "healthy" weight, doctors tell me I must be better. :confused2:


----------



## It takes Guts

emmaaaargh said:


> This thread is such a great idea!  Today I'm feeling kind of frustrated. I saw my GI yesterday and all seemed okay there. Platelets down, haemoglobin in range (finally), but my CRP was up. We agreed that if it was still up by the time of my next appointment, we'd move on to 100mg of azathioprine - which I'm fine with. Also, my vitamin D level is 20, so I'm now supposed to be taking 1200mg a day instead of 200mg.
> 
> But it's just that I'm kind of stalling when it comes to filling my prescription because we've had SUCH an argument with the pharmacy lately! I'm on 75mg azathioprine and for some reason my prescription fell out of sync - so I could order more 50mg, but not any more 25mg. I thought it'd been fixed - my dad rang the GP and they were really lovely, admitted they'd messed up, promised to fix it - but then we went to the pharmacy again and they only gave us 28 tablets of the 25mg. I'm supposed to have 100! I ran out the day before yesterday and haven't been able to get to the pharmacy yet, and I'm so tired of their not ordering the right medications when they're supposed to. With any luck they won't end up having to do all this for my 'new' vitamin D.
> 
> I've waffled on long enough - I'll leave it there for now. Just had to get it all out! :tongue:


Sorry to hear the docs aren't as organised as you need. I've had that. It's di frustrating when what you are expecting is just basic normal stuff they should be doing every day! On a practical note when my dose was changed to 75mg j was told to take 50mg one day and 100 the following so that it would balance out. This advice was from my IBD nurse. If they can't sort your dosage out ask them if you can do this in the interim maybe?

Good luck and let me know if it helped!


----------



## UnXmas

Feeling a little more optimistic about my weight now I think the excessive stoma output I've had the last few days is easing.

I had a codeine-free time yesterday, but took it as normal today, and I really do think taking it is better than not.

I have to go to the hospital for tests tomorrow.  Really don't feel like it and I'm not sure it's even going to result in any useful information.


----------



## syzygy

I thought things were on the mend, but today ended up being day 8 of D since my last partial obstruction.  I've managed to miss only one day of work, but it's really getting to me.


----------



## UnXmas

I had a good night's sleep, and feel better for it. Not sure I want to weigh myself in case I learn I'm not on track for tomorrow.


----------



## sammyb22

feeling frustrated...still waiting for call to start remicade!!!! why can't this move faster! If they hurt like this they would have set up for them!


----------



## UnXmas

UnXmas said:


> I had a good night's sleep, and feel better for it. Not sure I want to weigh myself in case I learn I'm not on track for tomorrow.


Well, it turns out I'm not exactly on track for tomorrow (not that surprised) but I've found I can make a great deal of difference to the scale depending on what I wear, eat and drink. I had considered resorting to "water-loading", except I'd probably drink Coke rather than water, to get some calories is (plus I don't like water), but even an ordinary drink makes a big difference when the doctors are dealing with 0.1kgs, where my losing 0.1kg means hospital, and gaining 0.1kg doesn't.


----------



## sammyb22

FML...should sum it up, been waiting for over a week for phone call from infusion center, and of course when I would go to the bathroom they CALL!!!


----------



## UnXmas

I made my weight-target, just. Now onto making next week's. 

But sleeping well, doing ok managing codeine, have some happy things going on at home, so I know I want to stay out of hospital.


----------



## UnXmas

I don't think I got enough calories in yesterday, so I'm trying to do things better today. I slept well despite taking Modafinil, which I'm very pleased about. I'm trying hard to moderate taking codeine.


----------



## Ann Morgan

Dear UnXmas: Thanks for the advice. The only time I was ever given prednisone was in 2001 when I had Optic Neuritis in my left eye. I had the Solumedrol for three day and then prednisone for two weeks. Boy did I feel good !  Of course I had a ravenous appetite while on the prednisone, but I felt so good. I was not taking any medication at the time for my Ulcerative Colitis because I was not even diagnosed until 2006. When I took the prednisone my diarrhea went away and all my aches and pains went away too. I know that it causes weight gain and that it is not recommended for long term use ( because of the dangers and side effects ? ).  And doctors don't want to give me hydrocodone either. I have taken hydrocodone before and I felt better taking that too. I am going to start PT on my shoulders probably next week. I cannot lift my arms up because of the osteo arthritis in my shoulders. I already walk hunched over and I have limited mobility in my neck. And this week my back started hurting ! I feel like I am on a roller coaster ride that never stops.: - 0  PS: This is a reply to the post you made on 10-25-2014 at 11:03am.


----------



## UnXmas

Ann Morgan said:


> Dear UnXmas: Thanks for the advice. The only time I was ever given prednisone was in 2001 when I had Optic Neuritis in my left eye. I had the Solumedrol for three day and then prednisone for two weeks. Boy did I feel good !  Of course I had a ravenous appetite while on the prednisone, but I felt so good. I was not taking any medication at the time for my Ulcerative Colitis because I was not even diagnosed until 2006. When I took the prednisone my diarrhea went away and all my aches and pains went away too. I know that it causes weight gain and that it is not recommended for long term use ( because of the dangers and side effects ? ).  And doctors don't want to give me hydrocodone either. I have taken hydrocodone before and I felt better taking that too. I am going to start PT on my shoulders probably next week. I cannot lift my arms up because of the osteo arthritis in my shoulders. I already walk hunched over and I have limited mobility in my neck. And this week my back started hurting ! I feel like I am on a roller coaster ride that never stops.: - 0  PS: This is a reply to the post you made on 10-25-2014 at 11:03am.


My doctors put me on a course of prednisolone a few months back, and told me it would help me gain weight - which I need to do! But all the times I've been on predisone and prednisolone, they've never given me an appetite or helped me gain weight. If only we could all swap side effects! The bone loss was a big concern for me, as I already have osteoporosis.

But I did feel more well - I don't know how to describe it, just a combination of more physical energy and a boost in mood (though the boost did feel kind of fake) - the first time I took prednisone, and when I took prednisolone. But now I'm on prednisone again and my mood and energy don't seem to have changed that much. :confused2: Why are these things not predictable?


----------



## UnXmas

Today - worrying about the effects various meds are having on me (or not having on me); not overly worried about my weight as I think I've been eating alright, but it's a constant thought in my mind. I'll weigh myself later. Basically the doctors have driven me to weighing myself twice a day now. When I get officially weighed at the doctor's each week, it's sometimes in the morning, sometimes in the afternoon. What you've eaten, drunk and are wearing make a big difference when they will put you in hospital if you lose 0.1kg, but not if you gain 0.1kg. So I have to make sure I'm on target constantly; plus I've been kind of bored today and have been a lot lately, I hate being bored.


----------



## Ann Morgan

UnXmas said:


> Today - worrying about the effects various meds are having on me (or not having on me); not overly worried about my weight as I think I've been eating alright, but it's a constant thought in my mind. I'll weigh myself later. Basically the doctors have driven me to weighing myself twice a day now. When I get officially weighed at the doctor's each week, it's sometimes in the morning, sometimes in the afternoon. What you've eaten, drunk and are wearing make a big difference when they will put you in hospital if you lose 0.1kg, but not if you gain 0.1kg. So I have to make sure I'm on target constantly; plus I've been kind of bored today and have been a lot lately, I hate being bored.


I don't have a scale at home. The only time I get weighed is when I go to the doctor. Since I have many Specialist Doctors that I see, including my Primary Care Physician, this means I get weighed on quite a regular basis. I would go crazy having to weight myself twice a day! I get bloated a lot, probably part of my Ulcerative Colitis. I also believe I have Bile Malabsorption because I have all of the symptoms......and I have had them for years. I take the Questran and it helps with those specific symptoms.

Keep in touch and take care of yourself.:rosette1:


----------



## UnXmas

Weight just isn't going on.


----------



## dave13

UnXmas said:


> Weight just isn't going on.


I know how hard you try.I wish I could do more than send good thoughts.


----------



## syzygy

Feeling pretty discouraged.  I've never really had "flares" before, but this one is going on for 2 weeks.  (In the past I've just had obstructive episodes.).  I'd gotten up to one light solid meal per day on Saturday and stopped having D, but I think I pushed things too far tonight by adding in a second meal of rice, beans, and spinach.  I thin the catch was that it was prepared spicier than usual by the burrito place.  So frustrating.  Remicade infusion #2 tomorrow.


----------



## Ann Morgan

syzygy:
If I am having a lot of diarrhea I usually eat what is called the BRAT diet. It is bananas, rice, applesauce and toast. Just plain white rice ( like Minute Rice ). Plain applesauce, not the flavored kind ( like cinnamon or whatever ). And just plain toast with nothing on it. The white rice and the banana are the two things that work best for me. I know everyone is different, but this is what I do.

Hope you feel better after the Remicade.


----------



## Ann Morgan

Today I am feeling confused.  Okay, I was diagnosed with Ulcerative Colitis in 2006

but I have been having diarrhea since 1997. Anyway, I looked up on the Internet

the difference between Crohn's and Ulcerative Colitis and according to those facts

I DO NOT have Crohn's.  But I recently had a CT Scan of my kidneys and abdomen

because I have a 1cm cyst on/in my right kidney. ( I had a 1cm cyst removed

from my left kidney in 2007, they did a major operation and not the laparascopic

kind. Why they did surgery on a 1cm is ridiculous from what I read on the Internet

about not having surgery unless a cyst is 3m or over. I had no information about

this cyst at the time and I just did what the doctors suggested ).

So I read the Final Report of my CT Scan of my kidneys/abdomen today

and here is what one note said : " The approximate 1 cm right renal cyst

appears somewhat more thick-walled on the current examination. No renal hilar

or para-aortic lymphadenopathy identified. Recommend MRI with contrast

material for further characterization of the right renal cyst.

Another note: Wall thickening and inflammatory change involving

the terminal ileum suggesting terminal ileitis.

Of course, this all freaked me out because I just had a colonoscopy

and it was normal, but I have had some changes in my symptoms since

May of this year. I also have B12 deficiency among many

other things.  Also, recently my Primary Care Physician ordered

a blood draw for me. The current blood test showed

that my alkaline levels are high. I am getting

a follow-up blood draw next week. I looked all this stuff up on the 

Internet and I am confused. I looked up Terminal Ileum so that I

could see where it was. I looked up terminal ileitis. I looked up

alkaline levels. I looked up Crohn's and Ulcerative Colitis. 

I see my Urologist next Monday.  He knows I don't want 

renal cyst surgery unless it is absolutely necessary.  I am 

sort of starting to see how all of my health issues are all

connected now.  One health issue leads to another. 

I guess I should stay off of the Internet for a while because

I get confused and then I get anxiety. Thanks for listening.

Have a nice weekend.


----------



## Gram214

Well here I am...4 A.M ! I was a bad girl and started taking prednisone 20 mg. I intend to do 20 for a week..then start a taper. Been there so many times it's not even funny . I only hope 20 cuts it . Now my GP will frown upon this but he hasn't walked or I should say tried to in my shoes for the last month or 2. My GI doc. is more llenient about pred. The pain in my feet was getting beyond bearable as well as every other body part also . My gut acts up only 1 to 2 times a day but that may be from the duragesic patches and hydrocodone I take . I understand they slow down bowel activity . All these pain drugs and still in so much agony ? WTH ??
 My pain level has gone down considerably already from one dose of pred.! I know how bad the evil drug is for me but it's dirt cheap and it works. I am due for my Remicade Monday morning but I question if it's even helping that much anymore . I wish there was a devise that we could look at our own colons...LOL last colonoscopy that I had mine looked like raw hamburger. But that was in January 2013 .
  Oh and Ann ...I know just what you mean about getting more confused if you read too much. Take it one day at a time and please don't let your illness take over your life. There will be bad days and there will be good days. I am here to swear to that ! 
 Feel well everybody and be kind to yourselves ! God Bless !


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## UnXmas

Ann Morgan - what was it that you found that told you you don't have Crohn's? Did you think you had Crohn's before? Sorry, I'm confused too - I think all those test results and Internet articles would confuse anyone.


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## UnXmas

I'm so full that I'm worrying I have another blockage building. :frown: And it is so hard to eat and I have to gain weight to stay out of hospital. So I'll either end up in hospital with a blockage from eating so much (again) or I'll end up in hospital because my weight's not going up enough (again). Or maybe both those things will happen again. :runaway:


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## scottsma

You're definitely between a rock and a hard place !!!

    I always read your posts hoping for some good news from you.

           I wish you the very best,chin up !


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## tuckersbaker

I think this is an amazing idea, and exactly what I have been looking for. I live in a teeny tiny town and am the only person with Crohns. So I feel alone today. I am in a flare today, not one of the worst but bad. I feel frustrated and a little angry. You would think after so long I would be able to handle this better. I have been crying out of frustration, and a little from pain, since Saturday. I am doing everything that I should, but still nothing works. I take Humira every two weeks, mylan, and budesonide and all I feel they do is make me sicker than before. I just want to scream. I don't know what is worse the pain, the nausea, or the heartburn.


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## UnXmas

You're not alone, tuckersbaker. :ghug: 

My weight has finally gone up!!! And I mean it's been up consistently for a few days, not just a fluctuation, not from heavier clothes or from being full of food or drink. All the cheese and butter is working. 

(I still feel I should not be having to do it like this though. I should not be having to eat tablespoons of butter, before I go to sleep so I don't have to feel how bad my stomach feels. I should not be having to stay up when I'm so tired and just want to sleep, but can't because I need to wait for anti-nausea medication to kick in so I can get more food down that day. And my doctors should not be making me gain weight by threatening me with hospitalisation if I don't gain. They should be fixing my digestive system so that I can eat and gain weight without it destroying my health. And if they can't fix it, they should leave me alone. You'd think after nearly killing me by making me eat more than my digestive system can take once, they'd have learnt something, but apparently not. Rant over. The only reason I can gain weight at all is because I have a stoma now. I don't know how I would have survived my last hospital admission without it. I don't even want to think about it. At least my surgeon knew how to help me, even if my other doctors don't.)


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## sammyb22

feeling pretty frustrated as usual. go for second remicade infusion Friday, and I think I am having some side effect issues, so fill in doc(mine on vaca) tells me try it again and see if side effects continue...and was happy I put on 2 lbs, the last time at doc's it was 75 DEG and I was in shorts!!! You really can't fix stupid!!!


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## syzygy

It's now three weeks straight of feeling crummy, which all started 4 days after starting Remicade.  Bloodwork, stool tests, and CT results look pretty normal.  I had my first formed BM yesterday, but then back to D (hopefully just due to the CT contrast agent working its way through me).  I ate a piece of toast with jam and a little bit of water 3 hours ago and am feeling as full as after Thanksgiving dinner.  I am just so frustrated.


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## UnXmas

UnXmas said:


> My weight has finally gone up!!! And I mean it's been up consistently for a few days, not just a fluctuation, not from heavier clothes or from being full of food or drink. All the cheese and butter is working.


Last night I had awful diarrhoea - two stoma bags of watery output in about five minutes. So then I was panicking (still half-asleep) thinking that all that lost water would make my weight go down, so I drank an Ensure at like three in the morning, and felt so ill after. And today I weighed myself and it _has_ gone down. Is it just lost water? When my weight had been higher the past few days, was that not real weight, was it just that I weighed more because I had a lot backed up in my digestive system that has now come out??? I am so so full this morning. I've been eating a lot last thing at night (or, in the early hours of the morning last night!), with the idea that I'll go straight to sleep and not have to feel how bad my stomach feels. But all it's doing is making me wake up in the morning so full I can't face eating any breakfast - I do, but I'm forcing it down, and it's not enough. Don't know what to do now.  :frown:


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## UnXmas

sammyb22 said:


> feeling pretty frustrated as usual. go for second remicade infusion Friday, and I think I am having some side effect issues, so fill in doc(mine on vaca) tells me try it again and see if side effects continue...and was happy I put on 2 lbs, the last time at doc's it was 75 DEG and I was in shorts!!! You really can't fix stupid!!!


I wish my doctors were stupid enough that I could feel confident that they wouldn't notice if I wore heavy clothing when my weight went up. Sorry you're struggling with weight and side effects also - seem to be common themes around here!


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## IofNewt

I had my fourth remicade infusion today. There are still no improvements though.. my bathroom visits are getting worse and worse.


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## Ann Morgan

UnXmas said:


> Ann Morgan - what was it that you found that told you you don't have Crohn's? Did you think you had Crohn's before? Sorry, I'm confused too - I think all those test results and Internet articles would confuse anyone.
> 
> My Urologist had ordered a CT scan for me to check my abdomen and kidneys. I saw some of the test results and something was mentioned on there about the possibility of me havig terminal ileitis. I see my Urologist this coming Monday.
> 
> Also, I recently saw my new GI doctor for a follow-up visit. I asked him about Bile Malabsorption and I said that I thought I had it. I don't like my new GI so I probaby won't be seeing him again. During our last visit he did not even make it sound like I EVER had to come back unless my symptoms changed. My old GI had me come in once a year so he could follow-up with me on how I was feeling and to renew my colon prescriptions. My new doc did a colonoscpy , he said it was normal, and I was to discontinue all of my colon meds. I think he just makes his money from doing a lot of colonoscopies ?  I don't trust him.  Thanks for listening.
> 
> I did not really answer your question ?


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## UnXmas

My stomach was upset again last night. I think it just can't take so much food.


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## Gram214

Hi all..I'm happy to say I am feeling better than I have in a while. Getting housework done...feel like a person again. Had my Remi Monday but  also am on a self started course of prednisone . My Remi nurse was not the least bit surprised when I told her I'd had enough of the pain and just started prednisone. She said lots of her "Chronnies" do just that when they reach the end of their rope.  She agreed the pain meds do nothing to treat the cause where as prednisone targets the swelling and inflammation that causes all the pain. 
 I am on the pain patch Fentynal..hydrocodone for breakthrough pain ...and still wasn't getting any relief . My problem isn't about gut pain as much though as everything else and I truly mean just that ! Turning over in bed was so painful and just lying still was too !! Ughhh my feet still are my main problem..I don't believe there's any hope for those puppies. 
 My GI at last visit sort of upset me when he hinted that depression may be more my problem than my Crohns . Hmmmm Did starting prednisone and getting almost immediate relief from the pain sound like depression ?? I think NOT. 
 Ann Morgan...at one point my GI also stopped my colon meds because my scope was so great . Then lo and behold a few months down the road..here came theeee worst flare of my life so far. Resulted in a month in the hospital....back on Imuran and Remicade . Just saying...if you do go off the meds be very very vigil for symptoms sneaking back.  Sorry for the novel...everybody have a good weekend and God Bless


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## Ann Morgan

It seems that the only food that is safe for me to eat is anything that I prepare at home. Going out to eat or eating food at other places is never safe for me. Well, maybe a plain bagel. I was stupid and bought two frozen dinners at the grocery store the other day. Yeah, I ate one yesterday and had diarrhea at least three times from the frozen dinner. So what did I do today, I ate the other frozen dinner......with the same results. I don't know why I do that sometimes, eat stuff that I know is going to make me have diarrhea. Well, at least I was at home yesterday and today. When I am out and about and going to doctors appointments and activities or errands I never eat while I am gone. I get all of my things taken care of and then I will wait until I get home to eat. I had major changes in my symptoms in May/June and I lost 20 pounds. Then later on I lost 10 more. My appetite changed drastically, I just had no appetite at all. Recently I was on Prednisolone for 6 days ( I had a terribly bad sore throat, which ended up with laryngitis and a cough and blowing my nose and, well, green snot. During the time I was on the Prednisolone I had a very, very good appetite ( of course ).  I was eating the whole time I was taking the Prednisolone that the Emergency Room people prescribed for me ( plus Hydrocodone and Lidocaine throat gargle stuff ). ( I did not have the green snot until four days later ad then my Primary Care Physician gave me antibiotics ).  Anyhow, sorry about mentioning green snot ?  So, the Prednisolone is all gone, but I still have the appetite !  I don't want to gain back the 30 pounds I lost because I am obese. My Endocrinologist even said one day that she would like to see me lost 20 more pounds !  I know I have already gained 4 pounds since being on the Prednisolone. I go see my Urologist on Monday and I am hating to think what the scale will say. OMG, I have been eating cupcakes and brownies and donuts from Circle K. Say What !   Wow. PS: I have stayed home for an entire week because I completely lost my voice due to the laryngitis. I still have a cough and I still blow my nose. I am staying home to save my voice for next week. I cancelled all my activities/appointments for this past entire week. When I say I lost my voice, I mean I could not talk at all !  I even had to have my sister call someone for me because I could not talk !  Have a great Thanksgiving and stay healthy everyone.


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## Ann Morgan

I have a question about terminal ileitis but I did not know what section to post it in ?  I recently had a CT scan of my abdomen and pelvis. My Urologist was checking a cyst on my right kidney that is 1cm. The new scan says the cyst appear somewhat more thick-walled. But then below these results the report mentions my ileum. It says: Wall thickening and inflammatory change involving the terminal ileum suggesting terminal ileitis. I was diagnosed with Ulcerative Colitis in 2006. I just had a colonoscopy in August of this year. I know that a colonoscopy and an endoscopy cannot see the ileum. I hate my new GI doctor, so if I needed to see a GI doctor about something on this new report I would have to choose a new one. I really don't need any more things wrong with me. I already have a long list of physical problems and mental health issues that I am trying to monitor on a regular basis. So, can anyone tell me about terminal ileitis and what tests they have had to see the terminal ileum ? Thanks for listening.


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## syzygy

Sorry to hear that, Ann.  My GI was able to reach the ileum with colonoscopy.  My impression is that's not unusual, because that's how they get the biopsies to check for granulomas (for CD diagnosis).  Otherwise, I'm not sure what they'd do other than CT/MRE.  I have ileal involvement with my CD but nothing in the large bowel.  I'm not sure how that fits with UC specifically.


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## Ann Morgan

I almost want to go back to my old Gastroenterologist and just pay cash for everything. He is not on my new insurance plan. He was a good doctor and I trusted him. I mean, you really have to trust someone who is going to put a scope up your ass : - 0 . 
His staff was so good too. They were professional and knowledgeable. One time I had to fill out some paperwork for a free-medication application. One of the gals there helped me with the application and even faxed the paperwork over to the drug manufacturer. They all know what they are doing there. I suppose that wouldn't be right to go behind my current doctors back and see another doctor ?  But I do know, for sure, I won't be returning to my new GI doctor that I just started seeing this year ( and the one that did my colonoscopy ).  I am tired. Too many decisions to make. : - ) .


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## lilac

doc let me have an overnight pass from hospital - back in at 8am to see my consultant and find out what next treatment is. Humira is a failure now. Think I'm starting Infliximab. Not gonna read dany patient stories about it - I'm going in with the psych that it'll work and I'll get into remission soon.

and i got offered a new job which is a relief  so not all bad


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## Ann Morgan

Lilac: It sounds like you have the right attitude about your trearment !  Glad to hear about your new job too !  Have a great week ! I have a new cell phone and I have no idea why this print is so big . : - 0


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## BlackButterflies

Been awhile since I've been on here.  Things were going great - then I started having pain, messed up BM'S, horrible reflux after eating anything and then I was throwing up acidic foam.  The last few days I dropped all solid foods and kept food to a minimum to heal up somewhat. It made a big difference.   I was eating too much in a sitting, I think my stomach is very slow to empty or something.  Still doing good though. I am functioning, working, volunteering and having a bit of a social life.  Definitely starting to manage this thing for the time being.


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## nogutsnoglory

I'm so over this (insert bad word) disease! I had a little break for a month not from symptoms but from running to specialists. Well that tiny break is over and I'm back in the game full speed. This is not a life.


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## IofNewt

I am finally improving. Got a colonoscopy yesterday and chatted with doctor. Turns out it was a bacteria giving me all that bathroom trouble. He gave me olestyr and it helped PLENTY after just one dose.

The only thing that hasn't improved yet is my mega-exhaustion, but hopefully once my appetite returns a bit more, that will help.

Oh yeah and doctor said my crohns isn't active right now, so the remicade is working, at least.


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## neohic

BlackButterflies said:


> Been awhile since I've been on here.  Things were going great - then...


Funny how we don't say how we're doing until something happens, eh? I'm in the same boat... haven't posted anything for a while because things have been going okay, but now...

Today I'm back to feeling frustrated. Been having a little bit of back pain lately and then Tuesday morning I passed a kidney stone. Where there's one, there's typically more, right? Hasn't been too long since my last run of scans that I had to drink all kinds of contrast and now I have the joy of drinking more this afternoon. Always something, it seems...


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## neohic

Still frustrated but pleasantly surprised when the tech looked over my chart with a surprised look on her face, "Hu... wonder why they have you drinking contrast?". Didn't drink anything but a whole bunch of water. Now the waiting game once again for the typical response of not finding anything and no one knowing what happened.


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## Polaris

Feeling pretty accomplished.. was able to eat and keep it down. Little pain today, too.


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## UnXmas

I finally, really have gained some weight. Was weighed at the doctors' yesterday and for once didn't have to worry about it.

Bad side: I feel nauseous a lot of the time. I never used to get this symptom. I've come off the two medications that could possibly have been causing it, so I know it's not a side effect. It's going to make gaining weight even more impossible if it carries on! But then sometimes it's just gone: I ate a battered sausage and chips from the fish and chip shop yesterday, and liked it and felt fine. Very full afterwards, but not nauseous.  But this morning it's back again. I've just taken the three different antiemetics that we had in the house, but it's still there and my stomach's been sore the last few days as well.


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## Ann Morgan

Holy H*ll !  

I was sick recently with a sore throat, laryngitis ( I actually totally lost my voice ), a cough, blowing my nose ( with green snot ). Sorry for the gross description. Anyhow, my Primary Care Physician prescribed an antibiotic for me. I have been having diarrhea every day since being prescribed the antibiotic !  I am so mad now. I had been having some success recently at keeping my colon happy. Well, my colon is not so happy any longer. The first antibiotic I was on I took for 7 days. I had diarrhea for 5 of those 7 days. Then my doctor gave me a different antibiotic. The second antibiotic gave me diarrhea, I took this antibiotic for three days. So, that is ten days of antibiotics and that is usually the number of days they give you antibiotics for, but my doctor gave me seven days worth of medication the first time around, and then seven days of medication the second time around. That would be 14 days of antibiotics. Well, as of Thursday morning, November 20th, I am not taking the antibiotics any longer. I have diarrhea off and on all day long now. I am a responsible person, so I will call my doctor on Monday and tell him that I will no longer be taking any more antibiotics because I am getting sick from them. My sore throat is gone, the laryngitis is gone, the cough, and the green snot is gone. I was even wearing a surgical mask around for a while because I did not want to cough on anyone and I certainly did not want to get additional germs from other people. Now I am trying to get my colon back on track, I don't know how long that will take but I am pretty mad right now about the whole antibiotic / diarrhea thing. I had diarrhea for 17 years, then this May I had horrible constipation !  So, I started to have some success in not having the severe constipation and not have the terrible diarrhea. I was having some control of it. I will now know that if a doctor ever asks me about medication allergies that I will absolutely mention that antibiotics give me bad diarrhea and I won't take them no matter what !


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## dave13

I have been feeling like crap since my Remicade infusion on November 3rd.Extreme fatigue,joint pain and depression.I usually feel fatigued after my infusion for a day or three,not weeks! After previous infusions I have been feeling better by now.I'm sure the waning daylight has something to do with feeling sad,but the fatigue and joint pain?

My GI is usually great with returning calls,not this time.I have been going to work and directly to bed.I've lost all the weight I gained from feeling better since starting Remicade in July.This was my 5th dose,my second maintenance infusion.

My GI did return my call,eventually.I know I am just one of many patients,but....WTF! Not even a nurse called me for two weeks! My infusion was 20 days ago.

My GI wants me to have blood work done to see if I am building up anti bodies to Remicade. I have not had any blood work done since the pre-infusion testing they do in July. Hurry up and wait.

Speaking of hurry up and wait...why do they ask for a cell/mobile # and proceed to call your homes land line and leave a message that prolongs having anything scheduled by _DAYS_?!? On a Friday even,so I have to wait through the weekend and start playing phone tag with them on Monday!

I'm glad stress isn't bad for us,oh wait....:ybatty::ybatty:


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## Ann Morgan

Dave: Your story reminded me of one of my own doctor / phone experiences. In 2009 I had a routine blood test for my Primary Care Physician. I played phone tag with the office gal about the test results. The doctors office had my home phone number, my cell phone number and my work phone number. I worked in an office and sat at a desk all day long right by my telephone. One day I get a notice that I have a registered letter waiting for me at the Post Office. I had to go inside the Post Office to pick up the letter. It was a registered letter sent to me from my doctors office !  They said they had not been able to get ahold of me and to call them immediately !  I think it cost over 6 dollars for them to send me this letter ?  I called their office and finally got someone to talk to me. The gal told me that my hemoglobin was extremely low and that I needed a blood transfusion and that I was to go to the Emergency Room as soon as possible !  I was tired all the time anyhow, so I did not think it was a life of death situation.  But after work I went home to feed my cats and then went to the ER. I was admitted to the hospital overnight and was given two units of blood. After the two units of blood, my hemoglobin was at an acceptable level. I still can't believe that the doctors office had to resort to sending me a registered letter. They had all three of my phone numbers and they had my permission to call me at work. I don't know if I will ever be able to understand how doctors offices operate. Now doctors have "portals" online and supposedly you can log into the portal and locate your blood test results and medication list and things of that nature.  But some doctors offices still just have an office gal call you with your blood test results or your x-ray results.  Sorry this is so long. Have a great week everyone.


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## dave13

Hi Ann Morgan

    I do have to give my GI and staff the benefit of the doubt. This is the first time they delayed so long. When I call them tomorrow I will say my cell is the best way to get an immediate response.

I am anxious to see what the blood work says. I am feeling better,but still very fatigued. The mood swings threw me for a loop.


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## Susan2

Not bad, thank you. (In answer to the question  )

I am very excitedly planning a trip to Peru in April next year. I am a bit nervous, too, as I have just been filling out answers to the questions on the booking form about my medical condition and its effects on travel and my dietary requirements.


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## afidz

I can't tell if I am getting Crohn's pains or if I am hungry. 
I should be thankful that I am relatively somewhat healthy right now but I am so tired of my life! I just want someone to stop talking about themselves and stop asking me for advice on their own dramatic life and ask me how I am doing. You want to know the answer? I am doing awful. I am so short circuited and frustrated right now that I can't think clearly. My abdomen has been hurting so much this last week, I want to throw up every time I stand up or sit down. I am dealing with severe bloating on top of it so I put off eating for as long as I can. I just want my life fixed.


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## afidz

afidz said:


> ! I just want someone to stop talking about themselves and stop asking me for advice on their own dramatic life and ask me how I am doing.


I don't mean anyone on here, in my personal life. Hope that didn't offend anyone


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## dave13

afidz said:


> I don't mean anyone on here, in my personal life. Hope that didn't offend anyone


no offense taken,afidz. We all need to vent. 

I like your new photo for your avitar.

One year ago today I brought myself to the ER.I would end up having a resection in my jejunum for a close to complete blockage.My introduction to CD.I guess I am feeling reflective today.The resection was done on the 25th of November,which is tomorrow.The 24th was the day I couldn't take the pain anymore and didn't know what was happening.I thought I'd been having bouts of food poisoning! I'm hoping I will make it through tomorrow and be able to say I made it a year(so far)with no new obstructions or stricturing,but today is the day the whole CD journey began for me.

 I am reflecting on Thanksgiving week last year and quite thankful I am not in the hospital! I feel pretty fortunate today.

I care how you feel afidz,and I know I am not the only crohnie here who does.Keep the faith! :ghug:


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## Ann Morgan

Avidz: great picture. I am going out of town for one week  for Christmas. I don' t know what I am going to eat and how many times I will have to run to the bathroom. I rarely travel. I am going to see my sister. She doesn't understand that when I say I need to go to the bathroom that I mean NOW.......not 10 seconds from now....but NOW.!!!#    I hope you start feeling better soon. Have a great week.


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## Ann Morgan

Dave.  I am glad you got the help that you needed last year. I never hesitate to go to the ER.


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## Ann Morgan

Ok, recently I was prescribed antibiotis. They  are really giving me terrible diarrhea. 
 I took my ten days of pills and that was that. I stayed home for 3 days. Today I had 6 "errands" to run.
 Errand # 4 was the Post Office. 
I was there using the self-service machine when all of a sudden I was cramping up. I had to use a bathroom ! Post Offices have no public restrooms.  OMG I was actually able to drive across the street to a Subway Store. The sandwich guy could see the desperation on my face. Eek, I needed a key unlocK the bathroom door. I wear large, long Poise pads every day just in case these things happen. If I start to have an accident the diarrhea goes onto / into the pad. I did not have to go home and nothing got on my clothes. I did not even buy anything at Subway. I want to thank the folks at Subway for being so kind. I would also like to thanK the folks at the Verizon store, they let me use their restroom when I was very desperate too.  : - )


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## Susan2

You need to be terribly careful with antibiotics. They all have diarrhea as a possible side effect but some are worse than others. Every time that you are prescribed antibiotics you MUST remind your doctor/specialist/surgeon that you have an IBD and that he/she needs to take this into account.


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## Ann Morgan

Susan2 said:


> You need to be terribly careful with antibiotics. They all have diarrhea as a possible side effect but some are worse than others. Every time that you are prescribed antibiotics you MUST remind your doctor/specialist/surgeon that you have an IBD and that he/she needs to take this into account.


Thanks for the information. I did not know that antibiotics caused diarrhea until I got this recent prescription.

Every single one of my doctors gets an extensive list of my medications, health conditions and surgeries when I have my new patient visit. My lists are very detailed and I keep them in my purse at all times, just in case I need to go to the Emergency Room. When I see my Specialist doctors on a regular basis I tell them all about any health issues that I am having outside of their specialty. So I tell the doctors all about everything, whether they want to know or not !

I had some major changes in May in my Ulcerative Colitis symptoms. I lost 20 pounds in 7 weeks. Then later on I lost 10 more pounds. I was not trying to lose weight at all. I had a lack of appetite either due to the symptom changes or maybe it was psychological. ( I had lost 60 pounds back in 2006 and it was psychological ). Anyhow, I have been telling all of my Specialists that I have lost 30 pounds and I wasn't trying to lose weight. Two of my Specialists are happy about my weight loss because I am obese. I keep try to get it into their thick skulls that I was not trying to lose weight, yet I lost 20 pounds in 7 weeks back in May / June. I like my Endocrinologist a lot, but she told me she would like to see me lose 20 more pounds. I have lost 30 pounds and I don't feel any better at all - - believe it or not. Now with my diarrhea issues because of the antibiotics, I am sure I will have no problem losing at least ten more pounds. Because of the diarrhea I probably will not want to eat anything because anything that comes out of my body will be terrible diarrhea. Hey, I will hit that 20 pound mark in no time !!!  I was 200 pounds and now I am 170. I have had trouble with my weight for 30 years. 4 1/2 years ago I was at a very comfortable weight of about 155. I felt quite good at that weight. Anyhow, I am so mad about this antibiotic thing. The labels say that I can have diarrhea for weeks or months after I have taken the medication !  SAY WHAT !!!!!!!!!  I am going out of town for Christmas for eight days. That means airports and airplanes and riding in other peoples cars where I don't have control to where and when I can use a restroom, and then what will I eat when I am gone. EVERYTHING is giving me diarrhea NOW. I hope this diarrhea from the antibiotics calms down because my Christmas trip or else I will be miserable the whole time I am visiting my sister. Ugh. Well, I have not had any green snot since discontinuing the antibiotics after taking them for ten days, so I think I will be okay.  I started to get sick THREE WEEKS ago. I don't have the sore throat at all or the laryngitis, but I still do not feel like my voice is back to normal yet. I am still blowing my nose a bit but I think that is because of the weather. And I cough every once in a while.

Well, I better end this post now. All of my posts are long. :lol:


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## neohic

neohic said:


> ... Now the waiting game once again for the typical response of not finding anything and no one knowing what happened.


Had the typical "watch everyone have a nice time" Thanksgiving yesterday... so that was nice. Got word back on Wednesday from my doctor on the latest scan. I've got gallstones. :ymad: Always something...


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## Ann Morgan

neohic said:


> Had the typical "watch everyone have a nice time" Thanksgiving yesterday... so that was nice. Got word back on Wednesday from my doctor on the latest scan. I've got gallstones. :ymad: Always something...


Hi. I was really sick for about 9 months in 1994.  From what I can remember, I visited my Primary Care Physician ( some old giy, I hate old doctors .)  I had an Upper GI. The results were normal. I walked out of the doctors office where they basically told me to just take antiacids. SAY WHAT. In 1995 my insurance company changed and I got a new PCP ( NOT an old guy ! )  When I explained my symptoms to my new doctor she knew right away what to do. I had an ultrasound. They found gallstones. One month later a General Surgeon took my gallbladder out. I felt better the next day. It is very unfortunate that I had to be sick for several months before I could get the proper diagnosis !  I never pick an old guy doctor anymore ! (  I apologize to any GOOD old guy doctors. )  I hope you feel better after your gallbladder surgery, I did.


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## Ann Morgan

Dear neo: I was alone for Thanksgiving and my Thanksgiving Dinner was a Root Beer float . It was delicious at the time, but today I paid the price ( it was good that I was at home all day long today. ).  Ugh, I recently had to take antibiotics. I had NO IDEA that could cause diarrhea in folks with IBD !  So now I am afraid to go out of my apartment.....ALMOST had two accidents outside of my apartment recently. We know how you feel because we have all felt it before ourselves. Keep in touch.


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## afidz

And the award for the most insensitive thing someone can say goes to...

I met up with some friends today.  They all know what I've been thrugh with Crohn's and my hernia. But they brought along someone new.  As I was introduced "oh my gosh congratulations! " I told her i wasn't pregnant. I dais I have serious health issues that make my abdomen look the way it does.  To me, that is when I expect the conversation to move on.  "I'm sorry for assuming blah blah" . Nope.  Not this little ray of sunshine!  
I quote
" are you serious or are you just f!%&in with me?  I can't tell because you really look like you are"

I told her I was being serious. I said I had just ate and was boated so my abdomen looked bigger than it does normally.  She then proceeded to explain how she could relate because her aunt has the same problem.  "Her stomach muffin  tops just like yours" 

who is raising these morons?


----------



## Ann Morgan

afidz said:


> And the award for the most insensitive thing someone can say goes to...
> 
> I met up with some friends today.  They all know what I've been thrugh with Crohn's and my hernia. But they brought along someone new.  As I was introduced "oh my gosh congratulations! " I told her i wasn't pregnant. I dais I have serious health issues that make my abdomen look the way it does.  To me, that is when I expect the conversation to move on.  "I'm sorry for assuming blah blah" . Nope.  Not this little ray of sunshine!
> I quote
> " are you serious or are you just f!%&in with me?  I can't tell because you really look like you are"
> 
> I told her I was being serious. I said I had just ate and was boated so my abdomen looked bigger than it does normally.  She then proceeded to explain how she could relate because her aunt has the same problem.  "Her stomach muffin  tops just like yours"
> 
> who is raising these morons?


I am sending many hugs your way !!!!!!!!!!!!!!!!


----------



## Ann Morgan

I am feeling mad because that lady was so mean and insensitive to afidz.


----------



## washicd

afidz,

I've read numerous of your posts.  You're helpful, comforting and interesting...which is probably more than can be said for your new acquaintance.

Thanks for your efforts, HUGS


----------



## dave13

I was asked,again,if crohn's is contagious. I think I met a relative of your new buddy afidz.:ywow:


----------



## Pilgrim

dave13 said:


> I was asked,again,if crohn's is contagious. I think I met a relative of your new buddy afidz.:ywow:


When we had a family meeting to tell the other kids about their sister's diagnosis, it was the first thing I had to tell them, LOL, that it wasn't contagious. The relief in the room was palpable - the expressions were priceless. :ylol2: It's a little funny from kids... but adults?:voodoo:


----------



## dave13

Pilgrim said:


> When we had a family meeting to tell the other kids about their sister's diagnosis, it was the first thing I had to tell them, LOL, that it wasn't contagious. The relief in the room was palpable - the expressions were priceless. :ylol2: It's a little funny from kids... but adults?:voodoo:


I try to see it as a legitimate question.I know I knew little about CD before being diagnosed,but,...geeez...I suppose the auto immune part spooks them. I just feel so insulted. I'm trying to take the high road here but...I'll stop a rant before it gets going.Rants can be contagious,don't you know. :ylol2:


----------



## neohic

dave13 said:


> ... Rants can be contagious,don't you know. :ylol2:


Ha! I see what you did there. :highfive:


----------



## UnXmas

Ann Morgan - I've taken antibiotics a few times since getting ill, and they gave me severe diarrhoea too (prior to me having an ileostomy anyway). For me it stopped a couple of days after I finished taking them. It's rare for it to go on weeks or months, but they always have to include worst case scenarios on the info. leaflets and websites of medications.


----------



## Ann Morgan

How am I feeling ?  I am confused about Whey Protein Isolate Powder. Is it bad for my colon or good for it ?  I have used it in smoothies.


----------



## dave13

Ann Morgan said:


> How am I feeling ?  I am confused about Whey Protein Isolate Powder. Is it bad for my colon or good for it ?  I have used it in smoothies.


Maybe ask this in the nutriton section,might get more hits.


----------



## Ann Morgan

dave13 said:


> Maybe ask this in the nutriton section,might get more hits.


All I could find at the time was the SCD and Palo diet section.
So I posted my question there. I got a mouthful from Kit. He says it is like putting shrapnel through my GI tract. :ywow::ywow:

 I will see what some OTHER folks say.  :rosette1:


----------



## kireikatt

Another day of moderate stomach pain (which puts me just about a month straight of pain x.x) but it could be worse, it could be severe pain!


----------



## Polaris

Bad day here. Really bad episode of abdominal pain which set off vomiting, and later diarrhea. Stuck in bed with my heating pad.. like everyday of my life lately.


----------



## UnXmas

UnXmas said:


> Ann Morgan - I've taken antibiotics a few times since getting ill, and they gave me severe diarrhoea too (prior to me having an ileostomy anyway). For me it stopped a couple of days after I finished taking them. It's rare for it to go on weeks or months, but they always have to include worst case scenarios on the info. leaflets and websites of medications.


Strange coincidence - today I've started another course of antibiotics. Some of the internal staples (I think they're staples anyway) from my last surgery are eroding through my skin and the incision site's infected.


----------



## UnXmas

dave13 said:


> I was asked,again,if crohn's is contagious.


I can understand why people ask. I'd want to know if I was at risk of catching a disease from someone else. And most people won't have had a reason to learn about Crohn's. But of course some ways of asking are much more tactful than others.

I think the word "disease" carries more negative connotations than terms such as "disorder" or "medical condition". That's just the impression I get anyway; I'm not sure of the distinctions between the actual medical definitions.

Maybe you could try to view the question in the same way as you view the questions nurses always ask you when you're admitted to hospital - if you've been swabbed for MRSA, if you've had diarrhoea or vomiting in the last 24 hours (yeah of course I have Crohn's  ) - they basically just want to know if you're going to make other people sick. Not a polite question, but practical, and understandable. But again, context, timing, etc. can make a big difference to how it comes across when it's a friend/colleague/relative asking you rather than a nurse.


----------



## neohic

Mixed emotions today. The decision was made to remove my gallbladder today which I was surprisingly okay with. Kind of hoping this will be the solution to my terrible year. On the other hand, my insurance deductible was been well taken care of so it really makes sense to take care of it before the end of December and the surgeon is only available until the 23rd while my schedule only allows for me to have it either the 22nd or 23rd... making a very merry Christmas for me. :facepalm:


----------



## ronroush7

Yesterday, I had my first accident in months.  I feel like I need to keep going since then.

 2


----------



## kireikatt

I had nasty crampy gas style pains at work today, to the point where I was sitting on a shelf behind the register, leaning against the wall while hoping no customers would come along. And of course, completely unable to pass gas, and the occasional feeling of _get to the bathroom now_ with no outcome x.x


----------



## Tamera

Hey Afidz,
I was reading your post from September and you could have fibromyalgia.

I was diagnosed with this in 2008 which I now believe it was because of Crohn's. I was so swollen my weight went up to 210 from my normal of 165. The doctor back then did the tender spots, neck, shoulders,wrists knees and feet. The rheumatologist wouldn't even consider it! One of those old school doctor's but my GP was convinced after my Mom researched it. Muscle relaxant s and pain meds helped.

I would have my GI test me for it! 

The last post about people who put their foot in their mouth you have to overlook. We live in a society if you don't look sick then you just can't be! Pray for them and smile!

Hope this helps!!:thumleft:


----------



## UnXmas

UnXmas said:


> Strange coincidence - today I've started another course of antibiotics. Some of the internal staples (I think they're staples anyway) from my last surgery are eroding through my skin and the incision site's infected.


And the antibiotics led to me having a fun night emptying my stoma bag four times.


----------



## dave13

UnXmas-I agree,the contagious question is a reasonable one.People are just being cautious.


----------



## IofNewt

One thing that still hasn't improved is my tiredness. Everything else is a LOT better now, though. I am somewhat worried that my energy levels will never improve, but at this point I am not sure that I even care about that anymore. I am not in the bathroom every 30 mins and when I do have to go, it is not painful. 

I'll freakin take it and be happy.


----------



## UnXmas

UnXmas said:


> And the antibiotics led to me having a fun night emptying my stoma bag four times.


But now my stomach is no longer sore and no longer oozing pus.  Magic antibiotics.


----------



## Ann Morgan

ronroush7 said:


> Yesterday, I had my first accident in months.  I feel like I need to keep going since then.
> 
> 2


I had an accident at home recently. I was so pissed off. Had 2 "almost" accidents outside of my apartment. This scares me because  I will be out of town for 8 days over Christmas time!  I don't have a clue what I will be able to eat ! And my sister has a brand,new car.....I am afraid I will be in the car and have an accident !  She is paying for my whole trip, which is so great. She is putting me up in a nice, relaxing hotel by a river. The whole idea is for me to relax, because I have very much stress in my life and suffer from anxiety !  I took antibiotics in November and that has given me very lose bowels every single day now.Yesterday, at home, I almost had another accident. Those antibiotics really f@cked up my colon and I am so mad about it.


----------



## UnXmas

Ann Morgan said:


> I had an accident at home recently. I was so pissed off. Had 2 "almost" accidents outside of my apartment. This scares me because  I will be out of town for 8 days over Christmas time!  I don't have a clue what I will be able to eat ! And my sister has a brand,new car.....I am afraid I will be in the car and have an accident !  She is paying for my whole trip, which is so great. She is putting me up in a nice, relaxing hotel by a river. The whole idea is for me to relax, because I have very much stress in my life and suffer from anxiety !  I took antibiotics in November and that has given me very lose bowels every single day now.Yesterday, at home, I almost had another accident. Those antibiotics really f@cked up my colon and I am so mad about it.


Have you tried loperamide (Imodium) and/or co-phenotrope (Lomotil)? Both good anti-diarrhoea meds with very few side-effects (before I had an ileostomy, I regularly took well over the recommended amount of loperamide with no problems). Imodium you can buy without a doctor's prescription. Codeine and Amitriptyline can also help diarrhoea, though Amitriptyline has a lot of side-effects and codeine is addictive.

Incontinence pads can protect your clothes, though may not hold it all if diarrhoea is very severe. 

When I got an ileostomy and was worried about leaks at night, I bought a mattress cover (draw sheet). Something like that would probably protect car seats.

Try to relax! You deserve a break. Accidents may happen, but life will go on afterwards.


----------



## FrozenGirl

Feeling very meh. Stomach pain and I'm 9 days away from remicade. And my doctor wants to reduce my dose. Ugh.


----------



## Ann Morgan

Hi unxmas: Ahhhhh, I was just writing a post and I lost it because I  pushed  a button on my new cell phone that I should not have pushed !!!!!!!  Thank u for your support and recommendations. I will talk to my pharmacist about it, she is really nice and helpful. I already take 2 Questran Packets a day, I have for years....and that has REALLY helped me to control my diarrhea.....until the antibiotics. 

I feel like I am a burden to my sister. I am physically and mentally handicapped. My sister is so good to me and I will never be able to pay her back for everything she has done for me. (  I used to have a job and was very independent. I mourn the loss of my old life every day. I know that I need a new life to replace the old one....but that has not happened yet. ) Now if I travel out of town ( which I rarely, rarely do ) I have to have special considerations made for me. A hotel room with a shower with bars to hold on to, my sister is renting a recliner for me to sleep in while I at the hotel because I cannot sleep in a bed because of arthritis in my neck, hips, and shoulders. Yes, the hotel will be removing the chair and ottoman from my hotel room and Rent-A-Center is delivering a recliner to my hotel room. My sister is paying for the airline ticket, hotel, and everything while I am there. 

She supported me financially for 9 months in 2012 when I was broke. I am 54 years old and she is 63 1/2. She just retired. She DOES have money, so I know that she is in no way going broke paying for my vacation and a lot of other things. She worked very, very hard for 35 years at the same company and she deserves a wonderful and happy retirement. SHE has many physical illnesses that she has to deal with and I don't know how she gets through each day herself.  But she has a loving, supportive husband, a daughter, son-in-law, and 2 grand-kids and obviously some great medications for her RA. M

My mental illness issues are embarrassing for me, just having lunch with relatives is a challenge. I know my sister and Aunties love me. I want to relax on my vacation. My mom died last year and she lived in the same town as me ( as did my dad before he died in 2005 ). This has left me alone in Arizona  and my sister has HER family and her own life in Idaho. I have been invited to Christmas in Idaho for the rest of my life. I don't want to ruin their Christmas and be a "downer".  It WILL be so nice to get away from these same four walls in my one room apartment.  

So sorry this is so long. I should be writing this on my depression website ( www.depressiontribe.con) or on another thread here. . Wishing everyone a happy and healthy holiday season. : - )


----------



## UnXmas

I know how you feel, Ann Morgan. I'm disabled and my parents are my carers. I'm also worrying about how to avoid being a downer at Christmas. But I'm hoping that focusing on watching my nephew get overexcited and keeping my poor dog calm will stop me wallowing in my own depression for a bit!


----------



## leezapeza

Hi guys I had the big op 2 weeks ago small bowel resection they had to snip a bit of my bladder as well the Crohn's was getting to that the tract bit and apparently I had a thing called meckels divaticulum had it since birth never knew till they found an absess there they took that a out and my appendix so I'm feelin sore biut miserable but I know it will help me for awhile I'm just feeling scared and over welmed


----------



## sully1102

Feeling the pain with the antibiotics. I had abscess surgery last month with a seton placement. I stopped the antibiotics for a week and had the most glorious poops. But, fevers came back and so did the augmentin. Now I'm pooping cake batter all day, and yesterday was twice in pants.... in my own home. 

The pooping leads to wiping, and wiping hurts with the recovery. Looking forward to ostomy surgery next month to give the old colon a rest.


----------



## Ann Morgan

UnXmas said:


> I know how you feel, Ann Morgan. I'm disabled and my parents are my carers. I'm also worrying about how to avoid being a downer at Christmas. But I'm hoping that focusing on watching my nephew get overexcited and keeping my poor dog calm will stop me wallowing in my own depression for a bit!


My niece has two daughters, nine years old and seven years old. They are very cute and lively. I will see them at Christmas. They also have a dog which  I really love, his name is Atlas and he was rescued from a shelter five years ago. The only downer of my Christmas vacation may be that I am going from my home in Arizona ( great weather here ) and I am going to Idaho to freeze my butt off !  :ylol:


----------



## ronroush7

Earlier, I was having a burning feeling when I needed to go to the bathroom.

 2


----------



## UnXmas

Ann Morgan said:


> My niece has two daughters, nine years old and seven years old. They are very cute and lively. I will see them at Christmas. They also have a dog which  I really love, his name is Atlas and he was rescued from a shelter five years ago. The only downer of my Christmas vacation may be that I am going from my home in Arizona ( great weather here ) and I am going to Idaho to freeze my butt off !  :ylol:


We should swap weather! I'm in England and for some reason this Autumn and Winter have been ridiculously warm. Probably not Arizona-warm but much warmer than England should be. But I want snow! I love the cold. And my nephew has it fixed in his head that "Christmas is when it snows"; that it snows every single Christmas and only at Christmas - which is a very understandable belief for a toddler to have when you look at Christmas cards and children's Christmas books. Unfortunately we haven't had a white Christmas here since 2010 and we're unlikely to get one this year!

I'd be lost without my dog, she's my baby!


----------



## UnXmas

sully1102 said:


> Feeling the pain with the antibiotics. I had abscess surgery last month with a seton placement. I stopped the antibiotics for a week and had the most glorious poops. But, fevers came back and so did the augmentin. Now I'm pooping cake batter all day, and yesterday was twice in pants.... in my own home.
> 
> The pooping leads to wiping, and wiping hurts with the recovery. Looking forward to ostomy surgery next month to give the old colon a rest.


I adore having a stoma. It's so much easier! Even though the antibiotics I'm taking at the moment are upsetting my stomach, all it means is that I have to empty my bag more often. But getting up in the night a few times to empty it takes two minutes each time, and I don't have to rush to the bathroom: the diarrhoea makes my stomach crampy, so that wakes me up, but even if it didn't it is unlikely the bag would fill completely, and if I _do_ start finding it fills before I wake up, I'd just switch to a larger bag at nighttime (when I was in hospital and unable to get out of bed, they gave me bags that drain like a catheter, and I took some home with me for emergencies). So no racing to the bathroom, no soreness from wiping, no hours _in_ the bathroom. I do have the occasional leak, but they are so much easier to deal with than the accidents I had before I had a stoma. I think everyone should have a stoma!


----------



## Susan2

UnXmas said:


> I adore having a stoma. ... I think everyone should have a stoma!


 :ytongue:


----------



## kireikatt

I've been getting nauseous in the morning sometimes, and I have a medication that can cause nausea if you don't take it with food, so I left it out of my usual handful of pills I take (which today was about an hour before I properly woke up) and I was still nauseous  Breakfast is the one meal that never hurts and it's frustrating to have to wait for the nausea to pass, especially on days when I have work!


----------



## sully1102

Screw the DEA. My pain meds ran out earlier this week, but surgeon can't simply call them in to the pharmacy. I either need to drive an hour to his office to pick up the script, or they'll mail it me.


----------



## dave13

I thought I tore a seton loose the other day.It was painful.My colorectal surgeon checked out my setons and said I pulled them and moved the knots,but did no damage.He remarked while checking the setons that the fistulas are looking better than he thought they would look at this time.Five or so months since my fistulotomy/seton placement.

I feel thankful that bit of encouraging news. :thumright:


----------



## ronroush7

I have gone to the bathroom four or five times already.  I am slowing every one else ul.

 2


----------



## Polaris

Had a colonoscopy today, and feeling so happy I can eat something again! I was hangry.


----------



## ronroush7

Had an accident yesterday and haven't felt the best since.

 2


----------



## Polaris

Lots of abdominal pain today. Busting out the heating pad.. it's been awhile.


----------



## leezapeza

Hi guys I'm starting to feel better now I can do more things still get tired when going for short im home now was staying with my parents till u was stronger I had surgery on the 27/11/14 not even 3 weeks ago I was a mess when they went in to do the surgery what should have taken 1 to 4 hours ended up to be 6 hours in surgery but I'm getting there I have a very active and aggressive Crohn's I hope they can get it under control


----------



## Ann Morgan

Okay. I was reading some stuff on www.m.webmd.com/croh and I came across this.....

"People with Crohn's Disease are usually able to lead active lifestyles".

What does everyone think about what they wrote ?


----------



## Polaris

Ann Morgan said:


> Okay. I was reading some stuff on www.m.webmd.com/croh and I came across this.....
> 
> "People with Crohn's Disease are usually able to lead active lifestyles".
> 
> What does everyone think about what they wrote ?


I wonder what their definition of "active" is. For me it means moving from my bed to the couch and back again.


----------



## leezapeza

stelarjess said:


> I wonder what their definition of "active" is. For me it means moving from my bed to the couch and back again.


Active? The only thing active is the Crohn's lol


----------



## Moriati

Today, I am feeling crappy and apprehensive. Just started humira, have no f**cking idea whether it will work - had so many conflicting stories and information from so many different sources that I don't know whether this is a complete roll of the dice going on Humira, or it actually has a decent chance of working. I dont know.


----------



## UnXmas

leezapeza said:


> Hi guys I'm starting to feel better now I can do more things still get tired when going for short im home now was staying with my parents till u was stronger I had surgery on the 27/11/14 not even 3 weeks ago I was a mess when they went in to do the surgery what should have taken 1 to 4 hours ended up to be 6 hours in surgery but I'm getting there I have a very active and aggressive Crohn's I hope they can get it under control


I hope things improve for you! What kind of surgery was it?


----------



## UnXmas

Ann Morgan said:


> Okay. I was reading some stuff on www.m.webmd.com/croh and I came across this.....
> 
> "People with Crohn's Disease are usually able to lead active lifestyles".
> 
> What does everyone think about what they wrote ?


I think this is true - I know a few people with Crohn's in offline life, and they are active most of the time. One had surgery (temporary stoma) but is back working as a PE teacher now! I think the worst cases of Crohn's are more likely to end up on online forums, but even here there are plenty of members who work, have families, go on holidays, exercise... I'd call that an active life even if there are the odd periods where they're stuck at home sick for a bit.


----------



## hamster139

> "People with Crohn's Disease are usually able to lead active lifestyles".


I read that too.  It angers me.  Reminds me of the advice that I just need to 'exercise more', eat more fiber and take Metamucil, and I'll be good to go.

And those with Chronic fatigue just need to take naps every now and then.

As UnXmas was saying, most people who have Cronh's become reclusive (like myself), so most of the general public doesn't know what we go through.  I often feel so bad, I can't live offline or online, I just want to curl in a ball and vegetate.


----------



## leezapeza

UnXmas said:


> I hope things improve for you! What kind of surgery was it?


I had a resection of the illiem and the bottom part of my colon out they took a bit of my bladder as well it was stuck to my small bowel I had a Catherter in for 2 weeks my appendix was also taken and they found I had a thing called meckels diverticulum up near my belly button its a slite bulging of the bowel they think I had it since birth doesn't usually cause probs but they found an absess there as well the surgan said it very rare too have it there and only 2% of people get it so that was taken out as well so I'm feeling pretty empty but finally on the mend I lost another 5 kg since the op on 27 of November


----------



## neohic

Today starts each day of feeling more anxious. Having my gallbladder removed on Wednesday and I cannot wait for that to happen.


----------



## long time crohnie

Hi everyone! I was having a bad day and thought i should go to the forum for some support. I have been experiencing some periodic cramping and pain due to increased diarrhea(which I always have btw). I made a dr appt w my GI and canceled it two days later. I know the same stuff will be discussed. Last tests show all is fine, blood work ok (at least no big change, I am anemic and have a B12 deficiency), could try something new for chronic D, and he'll tell me he won't give me any pain medication. Im not bad enough for humira, Imuran has been keeping my Crohn's under control for a long time now with the exception of having to go on prednisone for 5mos last year. I have severe chronic D. This creates a lot of discomfort and pain. I have been off narcotic medication for a couple years now due to my not wanting to be on them knowing my body was addicted to them and I didn't know where my pain threshold was anymore. I do have some that I use on occasion when Im real bad, and have noticed that I'm needing them more frequently now that i started to work again(just 2 days a week hostessing) and since my husband lost his job 6mos ago and still searching. Stress!! Anyway, I feel like shit and feeling very alone. Sometimes I think my couch is my biggest companion. Read something on short bowel syndrome and wondering if I suffer from that? I guess I know that narcotics are the ONLY thing that has ever slowed my gut and fear Im gonna need to go down that road again, I just can't comprehend how that is the only thing that helps me!! And believe me, Ive tried everything......unless u all know of something that I don't. Please help me not feel so alone when I feel like shit and the dr's have nothing to help!:sign0085:


----------



## dave13

We are here for you long time crohnie,when you feel like sh#t.


----------



## Ann Morgan

leezapeza said:


> I had a resection of the illiem and the bottom part of my colon out they took a bit of my bladder as well it was stuck to my small bowel I had a Catherter in for 2 weeks my appendix was also taken and they found I had a thing called meckels diverticulum up near my belly button its a slite bulging of the bowel they think I had it since birth doesn't usually cause probs but they found an absess there as well the surgan said it very rare too have it there and only 2% of people get it so that was taken out as well so I'm feeling pretty empty but finally on the mend I lost another 5 kg since the op on 27 of November


What is the healthcare like there ?


----------



## Ann Morgan

neohic said:


> Today starts each day of feeling more anxious. Having my gallbladder removed on Wednesday and I cannot wait for that to happen.


I was so sick in 1994. I saw my doctor. He was an old doctor. He did not know anything. I suffered for months. I got a new health insurance plan and a new doctor that was not old. My new doctor ordered an ultrasound and then I had gallbladder surgery a month later by a General Surgeon in 1995. Thank God I had changed insurance companies and had gotten a new, younger doctor......or I would have been suffering even longer.

Will be wishing you a quick recovery.:dusty:


----------



## Ann Morgan

hi long term chronie.  My symptoms changed drastically in May 2014. I got a new GI doctor because my insurance changed.  My new patient visit was very short. He did a colonoscopy ( with biopsy ).  A follow up appointment was not scheduled, which I thought was strange. One day an office girl called me with the results of the colonoscopy. She said it was normal and that the doctor wanted me to discontinue taking all of my colon medications ( Questran twice a day and Lialda pills ). I told the gal that I could not discontinue the Questran or else I would have yellow watery diarrhea all day long and I would be homebound ( my exact words ). She wrote down what I said and relayed the information to the doctor. She called me back and she said that the doctor said I could use my colon medications "as needed". I have never had a doctor tell me to discontinue medications before. I am not going back to him. He is an idiot. I had diarrhea for 17 years, then terrible constipation, then had the colonoscopy, then went on antibiotics in November, then got diarrhea from the antibiotics. Well, let's put it this way, I am not constipated any more. I am not cured. and I cannot discontinue my colon medication. I wish I had some pain medication or something. I would like Prednisone and Hydrocodone please, with a side of Clonazepam !


----------



## sleepallday

I ate way too much today and now am in pain  I ate literally about 6 hours ago it feels as if my food is stuck up high. Abdomen is all tense 
I do have surgery next Tuesday for an ileal resection due to scar tissue build up so maybe that's what blocking it. It's such a strange feeling.
How's everyone else?


----------



## sleepallday

Okay so now I'm feeling considerably worse since my last post.. My abdomen is so bloated and hard (it looks like I'm 6 months pregnant) and I feel ill also with a headache. 
I just took two panadol fortes and have also tried going to the bathroom to no success. 
Considering I have strictures and am due for surgery next week, can anyone suggest what I should do? Should I try and wait it out or go to the hospital? I don't want to be wasting anyones time in the ER (and it's now 8:20pm so no drs clinics open) but I feel like crap...


----------



## dave13

Lara said:


> Okay so now I'm feeling considerably worse since my last post.. My abdomen is so bloated and hard (it looks like I'm 6 months pregnant) and I feel ill also with a headache.
> I just took two panadol fortes and have also tried going to the bathroom to no success.
> Considering I have strictures and am due for surgery next week, can anyone suggest what I should do? Should I try and wait it out or go to the hospital? I don't want to be wasting anyones time in the ER (and it's now 8:20pm so no drs clinics open) but I feel like crap...


How are you today,Lara? Did you go to the ER?


----------



## ronroush7

hamster139 said:


> I read that too.  It angers me.  Reminds me of the advice that I just need to 'exercise more', eat more fiber and take Metamucil, and I'll be good to go.
> 
> And those with Chronic fatigue just need to take naps every now and then.
> 
> As UnXmas was saying, most people who have Cronh's become reclusive (like myself), so most of the general public doesn't know what we go through.  I often feel so bad, I can't live offline or online, I just want to curl in a ball and vegetate.


The specialist told me to take some Benefiber or something similar.  Wouldn't that make me go more?


----------



## Susan2

A number of Forum members take Psyllium husks and find that they help with diarrhoea. DustyKat can tell you more about them.


----------



## Ann Morgan

I did not know where to ask this. Should a person with Ulcerative Colitis/Crohn's drink alcohol or beer?  I personally cannot drink alcohol or beer because I have Acid reflux/gerd. Also I cannot drink with some of the medications that I take. But sometimes I wish I could have a cocktail every once in a while !


----------



## theOcean

Ann Morgan said:


> I did not know where to ask this. Should a person with Ulcerative Colitis/Crohn's drink alcohol or beer?  I personally cannot drink alcohol or beer because I have Acid reflux/gerd. Also I cannot drink with some of the medications that I take. But sometimes I wish I could have a cocktail every once in a while !



I think it very much depends on your medication, current state (remission/flare), and then in general what you can tolerate! I know I can't because of medication, but before I was on it I was fine drinking -- just never a very big fan of it, so I don't really miss it.


----------



## sleepallday

dave13 said:


> How are you today,Lara? Did you go to the ER?


Hi Dave! I ended up taking yesterday off work and trying to sleep all day. I still feel very blocked up and my dietician has suggested to use laxatives and that if they don't work, go to the ER. 
Thanks for asking  
How are you feeling?


----------



## sully1102

With regards to the "active lifestyle" comment, I've found most Crohn's patients I know have active lives. 

I tend to go 5-7 years between flares, and during that time I'm very active. The flares will limit me for a few months, but I'm already planning on a triathlon or two this summer after my ostomy surgery. At least I can't poop myself during the race with the bag!


----------



## Ann Morgan

I don't know what a "flare up" is ?    

I started having diarrhea in 1997.  I don't remember ever having a short or an extended period of time that I have not had to worry about the diarrhea, it is part of my daily life and I always have to worry about it. 


What is  "remission" ?

Me: 1997 until May 2014 diarrhea.
May 2014: started to have severe constipation.
August 2014: my new GI doctor did a colonoscopy with biopsy.
The colonoscopy came back normal and he told me to discontinue taking
all of my colon medications.
I cannot discontinue my Questran powder or else I will have yellow watery diarrhea
24 hours a day.
So, then he told me to take my colon medications "as needed".
I had been taking 2 Questran a day on a regular basis before the constipation started.
So after the normal colonoscopy I started taking only one Questran a day.
This was sort of working out for me ?
Then in November 2014 I took antibiotics. I did not know that the antibiotics
would cause diarrhea and my PCP doctor KNOWS that I have ulcerative colitis
and still prescribed it to me.
November : diarrhea again because of the antibiotics !
December: still had diarrhea because of the antibiotics.
December 2014: I have still been experimenting with one Questran a day,
but I really need two a day or else I WILL have diarrhea sometime during the day.
Now my colon is back to the way it was before May 2014.
Right now I am taking one to two questran packets a day, and taking what's left of my
Lialda pills. I am not going back to see this new GI doctor. I don't like him at all.

As far as I know, I have never gone through remission.

Recently I have been CONSTANTLY bloated every afternoon, just like a balloon
is inside of me. I am glad that I wear pants with elastic waists !

Thanks for listening. And good luck on your triathalon sully !!!!!!!!!!


----------



## leezapeza

Ann Morgan said:


> What is the healthcare like there ?


Not too bad u have to wait monthes to be seen by a specialist but if u go to ED tell them u have Crohn's h get a bed we don't have to pay for healthcare in the hospital I got really good care and the surgeon was very good


----------



## Muppetgirl

Lara said:


> Hi Dave! I ended up taking yesterday off work and trying to sleep all day. I still feel very blocked up and my dietician has suggested to use laxatives and that if they don't work, go to the ER.


Lara I hope you are feeling better. Is it a gentle laxative you are using? Please take care as I was told they can make things worse if you are obstructed.


----------



## ronroush7

I have had my fifth accident in two and a half weeks,


----------



## Ann Morgan

ronroush7 said:


> I have had my fifth accident in two and a half weeks,


I wish I had an answer to fix your problem, but all of our issues here are so unique that there is just not one right answer. Some folks use Metamucil. Some use Immodium. To soften stool some folks use Miralax. Or they use laxative pills. If I am having a really bad time with diarrhea sometimes I eat the BRAT diet, which is bananas, rice, applesauce and toast. I find that bananas and plain white rice work for me when I am having bad diarrhea. But sometimes no matter WHAT we do.....nothing works


----------



## ronroush7

Ann Morgan said:


> I wish I had an answer to fix your problem, but all of our issues here are so unique that there is just not one right answer. Some folks use Metamucil. Some use Immodium. To soften stool some folks use Miralax. Or they use laxative pills. If I am having a really bad time with diarrhea sometimes I eat the BRAT diet, which is bananas, rice, applesauce and toast. I find that bananas and plain white rice work for me when I am having bad diarrhea. But sometimes no matter WHAT we do.....nothing works


Thanks

 2


----------



## dave13

Lara said:


> Hi Dave! I ended up taking yesterday off work and trying to sleep all day. I still feel very blocked up and my dietician has suggested to use laxatives and that if they don't work, go to the ER.
> Thanks for asking
> How are you feeling?


Hi Lara

Have you tried a heating pad? Sometimes I find it can help along with a gentle massage of the area,gives a bit of relief.It might sound odd,but I take a hot bath and it seems to help move things a long.Since you are in Summer right now,that may not be to appealing.  It's Winter here. Please go to the ER if you don't find relief.

I have had a challenging last couple months but am feeling pretty good right now.Than you for asking.When aren't we challenged with this disease,right? 

My wife and I had a visit from her brother and her sister in law last night.I've been through three operations as well as being diagnosed with CD since we last met.I was a bit nervous about the evening for some reason.I just wanted to hang out and not have CD be the main topic of discussion.I wanted to hear about them and what they have been up to.They wanted to hear all about me.

It ended up being a great evening.We talked for hours and it felt like minutes.It was so therapeutic.I told them how grateful I was for there sincere concern.I feel very fortunate they care and support me.I've felt so alone recently and they helped chase those feelings away.

So,after the family visit last night,I feel pretty good this morning.


----------



## DustyKat

@ronrush7 - Have you had a small bowel resection and in particular the terminal ileum? 

Dusty. xxx


----------



## ronroush7

A bowel resection,   Why?


----------



## UnXmas

Ann Morgan said:


> I don't know what a "flare up" is ?
> 
> I started having diarrhea in 1997.  I don't remember ever having a short or an extended period of time that I have not had to worry about the diarrhea, it is part of my daily life and I always have to worry about it.
> 
> 
> What is  "remission" ?
> 
> Me: 1997 until May 2014 diarrhea.
> May 2014: started to have severe constipation.
> August 2014: my new GI doctor did a colonoscopy with biopsy.
> The colonoscopy came back normal and he told me to discontinue taking
> all of my colon medications.
> I cannot discontinue my Questran powder or else I will have yellow watery diarrhea
> 24 hours a day.
> So, then he told me to take my colon medications "as needed".
> I had been taking 2 Questran a day on a regular basis before the constipation started.
> So after the normal colonoscopy I started taking only one Questran a day.
> This was sort of working out for me ?
> Then in November 2014 I took antibiotics. I did not know that the antibiotics
> would cause diarrhea and my PCP doctor KNOWS that I have ulcerative colitis
> and still prescribed it to me.
> November : diarrhea again because of the antibiotics !
> December: still had diarrhea because of the antibiotics.
> December 2014: I have still been experimenting with one Questran a day,
> but I really need two a day or else I WILL have diarrhea sometime during the day.
> Now my colon is back to the way it was before May 2014.
> Right now I am taking one to two questran packets a day, and taking what's left of my
> Lialda pills. I am not going back to see this new GI doctor. I don't like him at all.
> 
> As far as I know, I have never gone through remission.


There is a bit about the definition of remission here: http://www.crohnsforum.com/wiki/remission

The forum Wiki also has a page on flares, but it's not very helpful. Flares are basically the opposite of remission - times of active disease. But as you can see from the Wiki page on remission, there are multiple ways of defining remission (or multiple types of remission), so I think there are multiple definitions/types of flare too.

If you are always having symptoms, you could always be flaring, but it's also possible not all the symptoms are caused by UC and you have been in remission. For example if in one period your test results are normal you may be in remission even if you are still having digestive symptoms. E.g. you could be having diarrhoea being caused by antibiotics (which can cause diarrhoea in people who don't have IBD or any other digestive condition).

So it's complicated!

If your question is about drinking alcohol, taking medications that can interact badly with it should rule out drinking being a good idea regardless of whether a person is flaring or not. Besides that, it really depends on each individual's symptoms - whether or not they are worsened by alcohol, and if they are, whether the individual feels worsening their symptoms is worth the pleasure of a drink! Starting with a very small amount of alcohol and seeing how it goes down is probably the best way to start.


----------



## ronroush7

ronroush7 said:


> A bowel resection,   Why?


I hope I didn't sound rude.


----------



## Ann Morgan

Unxmas: Thanks for your help. I tried to talk to my new GI about Bile Malabsorption and he wasn't really interested in taking about it and pretty much said I don't have it. New information has come up about my colon health since I last saw my new GI. I had a CT Scan and MRI of my abdomen, ordered by my Urologist. The results of one of those tests showed the possibility of terminal ilietis. I know that terminal ilietis can't be seen during a colonoscopy ? I really don't have any of the symptoms of terminal ilietis ?  Well, when I get a new GI sometime this year I will bring the colonoscopy results with me and the CT Scan and MRI results also. I just thought that maybe my yellow watery diarrhea could be caused by Bile Malabsorption ?  All I know is this, I cannot go without the Questran Powder completely, I must take at least one packet per day. Thanks for listening. Going to fly to my sisters place tomorrow for Christmas.


----------



## DustyKat

ronroush7 said:


> A bowel resection,   Why?


To try and ascertain what may be causing your problems. Bile salt malabsorption is a very real possibility if you have had a ileal resection or have scarring.


----------



## ronroush7

In 1990,my bowels got twisted and they took 6 cms.  of my colon.


----------



## DustyKat

@Ann Morgan: If the scope is able to be passed through the ileo-caecal valve then the GI should be able to determine if Terminal Ileitis is present. 

Dusty. xxx


----------



## duh panda

I'm feeling like...

I'm so tired and fed up with the repeat infections.
Of the gut pain and inflammation.
Of hurting so bad I don't know if I want to puke, poop or cry; and knowing that none of those things can offer relief. 
Of wanting to feel alive instead of waiting to live while working to survive.

I feel embarrassed about the fact that I have been sick for so many years, and that while other's in my life can seem to accept this, I can't stop thinking of having a disease as an excuse that doesn't belong in my life. I can't shake the self-judgment that I should not be chronically ill.

I feel guilty. Guilty about the smells, about the pain, about the disease and knowing that no matter how well I communicate with others they are just as, if not more, helpless then I am when it comes to dealing with it all. It makes me feel like I'm doing something wrong just by being ill, and as a result others must be disappointed in me. 

I hope and trust that the latest choices for medications will result in a month, a year, a decade of wellness. 

I look forward to feeling well enough again to have the strength and energy to meet my nutritional needs without daily assistance, to be under my own roof, to be able to leave my mother's care and return home.


----------



## UnXmas

duh panda - I wish I had something helpful to tell you, I felt so bad for you reading that post. The only tentative advice that comes to my mind is not to pin your hopes on finding treatments and getting well: don't spend your life waiting to get better. Acceptance - acceptance of being ill, of not being able to live the life you want (or the life you feel you should) - can actually be very liberating. Then you can concentrate on what you are able to do despite being sick, including what you can do for other people. This illness is not your fault, and it sounds like some people in your life recognise this - thank them for understanding, and try to believe that they're right!


----------



## UnXmas

Ann Morgan said:


> Unxmas: Thanks for your help. I tried to talk to my new GI about Bile Malabsorption and he wasn't really interested in taking about it and pretty much said I don't have it. New information has come up about my colon health since I last saw my new GI. I had a CT Scan and MRI of my abdomen, ordered by my Urologist. The results of one of those tests showed the possibility of terminal ilietis. I know that terminal ilietis can't be seen during a colonoscopy ? I really don't have any of the symptoms of terminal ilietis ?  Well, when I get a new GI sometime this year I will bring the colonoscopy results with me and the CT Scan and MRI results also. I just thought that maybe my yellow watery diarrhea could be caused by Bile Malabsorption ?  All I know is this, I cannot go without the Questran Powder completely, I must take at least one packet per day. Thanks for listening. Going to fly to my sisters place tomorrow for Christmas.


I thought the main symptoms of terminal ileitis were abdominal pain and diarrhoea? Which are both very non-specific symptoms, and even if you don't have the main symptoms of terminal ileitis, there are atypical presentations. So, I would say on the one hand that, as with many conditions, it might be better to rely on test results than symptoms when assessing a diagnosis. But on the other hand, sometimes we do have a certain intuition about what is wrong with us, and often we know the specifics of our symptoms far better than a doctor does; e.g. you know the nature of the diarrhoea you get: colour, frequency, amount, degree of urgency, what makes it better or worse, while a doctor might just hear you say "diarrhoea" and ask for no further details, or stop listening when you try to tell him. And I don't know that much about terminal ileitis - are there other symptoms you're missing that make you doubt you have it?

Are there any tests for bile acid malabsorption? If your GI is right and you don't have it, he should should have given you a good explanation of how he knows you don't have it, and have given you another reason for the diarrhoea.

I hope a new doctor and some further tests will clarify things for you. If the Questran works, keep taking it.

Have a wonderful time at your sister's, and a very happy Christmas.


----------



## DustyKat

ronroush7 said:


> In 1990,my bowels got twisted and they took 6 cms.  of my colon.


So large bowel resection then? 

The reason I asked about small bowel and the ileum is a resection or extensive scarring in this area has the potential to cause bile salt malabsorption diarrhoea. This occurs because this is the area of the bowel where bile salts are absorbed into the body. If this absorption fails to occur then the salts are dumped into the large bowel and this in turn has a detrimental osmotic with the function of the large bowel. 
When liquid faecal matter passes from the small bowel into the large what usually happens is water is absorbed out of the bowel and back into the body which firms up the stool. The presence of large amounts of bile salts in the large bowel has the opposite and so more water is brought into the large bowel. The result is frequent loose bowel motions. 
Psyllium has the same effect as Questran, while in the general population it is used to treat constipation in the case of bile salt malabsorption it actually absorbs the excess the salts in the ileum and in doing so helps firm up the stool by decreasing the adverse osmotic effect in the large bowel. 

Inflammation or extensive scarring in the large bowel also results in diarrhoea but by a different action. It occurs because the excess water in the stool can’t pass through the damaged bowel wall and back into the body, therefore the motions remain loose. I don’t imagine that Psyllium would be of any use in this case and would likely worsen the situation?? 

Dusty. xxx


----------



## ronroush7

The resection was in the small intestine,


----------



## Ann Morgan

Dustycat: Could I take psyllium (metamucil) instead of the questran. Or both on the same day? I bought a huge container of Metamucil  several monthe ago and I have only used it once . Happy Holidays.


----------



## neohic

Today I feel like I was hit in the guts with a baseball bat. Had my gallbladder removed yesterday. Everything went great and I was feeling okay. Now starts the healing process... it'll feel worse before it gets better, right?

Lots of naps today.


----------



## DustyKat

Ann Morgan said:


> Dustycat: Could I take psyllium (metamucil) instead of the questran. Or both on the same day? I bought a huge container of Metamucil  several monthe ago and I have only used it once . Happy Holidays.


You can take psyllium in place of Questran but if Questran is working and you are happy with it maybe stick with it. 

Psyllium does have similar time constraints to Questran when taking other medications. 

If you do start taking psyllium, and there would be no reason you couldn’t use Questran and Psyllium on the same day, you need to start out slowly and build up until you hit the right amount for you. By slowly I mean a teaspoon at the most from the outset. Don’t follow the instructions on the packet. Have a look at this thread as many people have listed their experiences with it.  

http://www.crohnsforum.com/showthread.php?t=13856

The other advantage with Psyllium is that you can use it on cereals and in cooking things such as soups, gravies, biscuits, cakes and so on. 

Dusty. xxx


----------



## duh panda

UnXmas said:


> duh panda - I wish I had something helpful to tell you, I felt so bad for you reading that post. The only tentative advice that comes to my mind is not to pin your hopes on finding treatments and getting well: don't spend your life waiting to get better. Acceptance - acceptance of being ill, of not being able to live the life you want (or the life you feel you should) - can actually be very liberating. Then you can concentrate on what you are able to do despite being sick, including what you can do for other people. This illness is not your fault, and it sounds like some people in your life recognise this - thank them for understanding, and try to believe that they're right!


Thanks UnXmas! I certainly agree although it seems like the grieving process never really ends. There are moments of acceptance then moments like the other night where it just hits. Helps to have reminders like what you've provided. 

I'm thinking part of it all is because I'm living with my mom currently with the purpose of getting better and pursuing new treatment options (which do seem to slowly be helping) after hitting the ground hard following a thousand mile move this summer. The more decent days I start having again the more impatient I get to move back out on my own  Looking forward to being back in my own home in the next couple months regardless of whether things improve any further or not, and get to explore a new area bit by bit.


----------



## BlackButterflies

Needing a vent, sorry but I am just so angry.  Been away a long time.  Having gut pain no matter what.  Feel like I was repeatedly punched in the stomach and the rectum.  I am going to see about steroid enemas tomorrow since it seems more localized there at the moment.  I am so incredibly angry.  I just feel like screaming and ripping out my insides in a fit of rage.  Instead I will have some water and go to bed with heat..  so angry inside though.  I hope this passes soon.


----------



## leezapeza

Hi guys I'm feeling itchy today my wound is getting itchy I had a couple bowel re sections just under a month ago and my wound is healing nice but oh man do I wanna scratch


----------



## Ann Morgan

I had a terrible watery diarrhea accident this morning while walking to the restroom. I am very pissed off. It was so gross. I am out of town visiting relatives. I am staying at a nice hotel here. Now I have to stay " home " today. I cannot see my niece and her two kids today. I last time I saw the girls was 2 1/2 years ago.The girls are 9 years old and 7 years old. I will miss seeing them today. ( I DID see them yesterday.) They are going out if town on December 26th, in 2 days. I have been enjoying my visit here. My mom and dad are dead now. My older sister is my only sibling. So, here I sit in the hotel chair watching television, bummer. I am afraid to eat anything today. I am going to make sure I drink plentry of water today. I have to get my colon regulated by tomorrow ( sigh). When I am at home I don't eat a large variety of foods because I can not eat so many things. So, now I am out of town and eating at restaurants and food from my sisters house. My bad,  I ate bruschetta at an Italian  restaurant yesterday. I cannot eat raw vegetables and greasy/oily food is a food trigger for me. I was supposed to go to a movie with the girls today. I am upset. I am mad at my Ulcerative Colitis. I am mad that I at a food item that I knew I should not eat ( but I miss food with flavor). I am going to be in my hotel room all day today. My sister IS going to stop by my hotel room later on today and we are going to play scrabble. The bummer part is that even if I am taking my medication properly and I eat the proper foods, I can sometimes still have diarrhea issuses. At home I eat smoothies and cereal/milk.  My biggest fear of this whole vacation has been the fear of having a diarrhea accident  in my sisters brand new fancy Chevy Impala. It is a really nice Chevy Impala, with all the bells and whistles. I will end my rant now. I am hungry right now but I am afraid to eat anything !  My mom dad and I have lived on Arizona for many, many years. They are dead now, so I am in AZ alone. My sister has lived in Idaho for 37 years. I spent almost all Christmas times with mom & dad except for 3 times during my entire lifetime. We had an occassional Christmas visit from my sister and brother-in-law . My niece would only fly down to AZ with the girls once every two yeas . Have a Merry Christmas.


----------



## Gram214

Hi Ann..I want to let you know youe aren't alone..ever. Even if you are by yourself in a hotel room...your Heavenly Father is with you always . 
I hope your "D" leaves you so you can enjoy the time with your loved ones. I know before you mentioned that you thought you might be a burden on your sister. I don't think she sees it that way at all..just helping her much loved sister . Bless her heart. 
 OK...everyone have a nice Christmas and a Happy New Year !


----------



## UnXmas

So sorry, Ann Morgan. Your worries about the car - do you/your sister have an old shower curtain? Before I got a proper draw sheet, I used an old shower curtain as a mattress cover - it worked! Or a plastic mac (rain coat) might work. I'm thinking of you. :hug:

We had one get together/party today. I'm worried I was a misery; I wasn't feeling good physically, but just got depressed by the whole Christmas thing in general. Oh well. The next couple of days people are coming here, which is easier than trying to manage at other people's houses.


----------



## Ann Morgan

neohic said:


> Today I feel like I was hit in the guts with a baseball bat. Had my gallbladder removed yesterday. Everything went great and I was feeling okay. Now starts the healing process... it'll feel worse before it gets better, right?
> 
> Lots of naps today.


I had a Laparascopic Cholestectomy in 1995. The next day I felt better already. My surgery was done with a scope, no big cut on my belly and no big scars or long healing time. I just had 2-3 very small incisions and the operation was done by a General Surgeon. 

Sorry you feel so crummy. If you keep feeling crummy then contact your doctor. Merry Christmas and Happy New Year.


----------



## Ann Morgan

Merry Christmas To You All !!!!!!!


----------



## ronroush7

Merry Christmas. 

 2


----------



## kireikatt

On antibiotics for a sinus infection with the expected results of being on antibiotics x.x


----------



## Ann Morgan

kireikatt said:


> On antibiotics for a sinus infection with the expected results of being on antibiotics x.x


I was on antibiotics in November of this year. I was diagnosed with Ulcerative Colitis in 2006. No one ever told me that antibiotics would cause me to have terrible diarrhea. I wish I would have known that before I started taking the antibiotics this November. I had pharyngitis and laryngitis ( and green snot ) this year. Exactly one year ago I had the laryngitis too ( but not the green snot, so no antibiotics ).

My Primary Care Physician knew that I had Ulcerative Colitis and still prescribed the antibiotics for me. Now that I know about the antibiotic/diarrhea thing, I will not be taking any more antibiotics unless it is absolutely necessary. 

I hope that your side effects are minimal. I have learned more on this website about my disease than I have by any doctor or medical professional, and I started to have symptoms in 1997.


----------



## kireikatt

I don't even know what I have yet, but these antibiotics are giving me watery diarrhea. Part of it might be the two packets of Miralax I had Tuesday (capsule study) but I assume that should be out of my system by now. My colonoscopy prep didn't leave me with diarrhea for this long, after all. Imodium type medications aren't helping at all.


----------



## ronroush7

My legs were hurting earlier during a walk and my head hurt at dinner.   My throat was a little raw last night.  Better today but took a lozenge.   Waiting for a call from my doctor.   One says the Crohns had spread.   The specialist says no?


----------



## UnXmas

Merry Christmas to you too, ronroush. Sorry you're having problems. It can be hard to find a doctor this time of year.


----------



## UnXmas

Are you still getting diarrhoea Ann Morgan? How was the rest of your Christmas?

kireikatt - it could well be the antibiotics causing you diarrhoea. They often have that effect, especially for people who already have digestive problems.

I had to take a week-long antibiotic course just recently, and the first day I had terribly watery stoma output and went and bought lots of Imodium, but after that first day (well, actually the diarrhoea came in the night following the first day I took them), everything settled down on its own. It's always so unpredictable!

Antibiotics do a lot of good though. I was taking them for an infection in a surgery incision that I had left alone for weeks hoping it would heal on its own, but eventually it actually started getting worse, and after just a few days of antibiotics, the redness, soreness and oozy pus just disappeared from my stomach.


----------



## Ann Morgan

Unxmas: I no longer have the antibiotic diarrhea. 

I went to Idaho for 8 days over Christmas time. It was a special Christmas because my parents are both dead now. I had a good time in Idaho, but I was so not used to being around a lot of people. I am used to living my life alone. I sort of felt like a stranger there, because everyone there is so busy and they "have a life". I know that next Christmas with my sister and her family in Idaho will be better for me because I know what to expect now and I will feel more comfortable. I only had one really bad "colon" day in Idaho. One day we went to an Italian restaurant and I ate bruschetta.  I cannot eat raw vegetables and bruschetta is basically little pieces of crusty bread that you put a tomato mixture on. I miss food with flavor and so I ordered it. 

I had a diarrhea accident at 7:30am the next day and I stayed in my hotel room the whole day, just in case I had more diarrhea. I did not have any more diarrhea that day. This is hard to explain, but I was not sleeping on a bed when it happened. I had a recliner in my room to sleep in because of my hip, neck, and shoulder arthritis - - - so I did not soil the bed. Also, the accident just seemed to happen as soon as I stood up, not while I was sitting/lying in the recliner ( which was some kind of vinyl material). 

I was just so pissed off that I made such a bad food choice, knowing that the outcome would not be good. I could have just ordered some plain spaghetti or something like that. 

After the accident I had to wash my pajamas and underwear in the hotel bathroom sink ( gross), then double-bag them and send them to the hotel laundryroom to be washed properly. I missed spending that day with my sister, niece, and 2 great nieces.....they all went to see the new movie "Annie". I am still upset that I did not get to see the movie with them. My 2 great nieces are so full of energy and are very happy girls. I am amazed by the both of them. They have done more in their short life-time than I have done and I am 54 years old. Like: Travel to sevetal different states and Hawai'i, and Japan. They take piano lessons, Japanese "school", a special math class outside of theit regular school, they ski, they speak some Japanese, and one of them already has a love for reading and she is only 9 years old. They are so smart ! 

I can eat cookies and fudge and not have tummy troubles at all. But I cannot eat raw vegetables or fruit. I am back home now. It was 24 degrees in Boise yesterday ! Brrrr. It is unusually chilly in Arizona right now, but at least I don't have to wear a jacket, gloves and a scarf everywhere I go !  I don't miss the weather in Boise. I would not want to live there or drive there. B

But sometimes I get confused by my colon ?  I ate McDonalds for dinner on Friday evening in Idaho and McDonald's for breakfast on Saturday in Phoenix......and still no diarrhea !!! Say What ?  

Happy New Years to everyone. I will be staying home on New Years. Bummer that I cannot drink alcohol because of my acid reflux. When I was working I went to many "happy hours" with my co-workers.....what fun. Well, that was my old life, now I can hardly drink or eat anything without fear of having diarrhea. This means I feel very uncomfortable going out and doing things. My sister does not understand my colon disease. I think that she thinks that as long as I eat properly and take my medications that I will be "okay". But this disease is very unpredictable and even if I try my best I can still have colon issues. I am afraid to eat out in restaurants. 

Good News: my sister and brother-in-law are retired now and will be spending January through March here in my town every year. I need time with my sister because both my parents are dead. It will be good for me to have company and to socialize. I should have some Aunties and Uncles visiting too. Everyone comes to Arizona in the wintertime because of the great weather. 

Thank you for listening. I can't wait to get back to making my smoothie every day, I really like them and I missed them while I was on vacation in Idaho. 

Take Care Everyone.


----------



## UnXmas

Ann Morgan, I know exactly what you mean about everyone else having a life!

But you are already doing the best thing you can do in your situation: seeing all the things other people are doing and admiring them and loving your relatives. Some people would be bitter and jealous and it would be the hardest thing in the world to spend time with them, but you want to and it's only your illness that makes it so difficult.

How much have you tried to explain to your sister? Can you send her links to websites that explain the disease, or maybe even copy a couple of your posts and send them to her? And maybe you could see if a couple of relatives would like to speak to you on the phone or by Skype or something a bit more often, so when you next meet up you're more familiar with people?

Also, when you have accidents, do you get any warning or sense of urgency that you need to go before it happens? Sorry if you already mentioned this before, but have you discussed it with a doctor at all?

I really hope next year brings good things for you.


----------



## kireikatt

They're definitely helping with my sinus infection, at least. Today is day five of ten of being on them, but now I've got hemorrhoids and a yeast infection, which made work today very uncomfortable. I've been taking an Imodium or two a day and it's really not helping x.x


----------



## Ann Morgan

Unxmas: Thank you for your suggestions. Last year I tried to get my sister to understand my Major Depressive Disorder by printing up 18 pages about it from the Mayo Clinic website. I don't know if she read it, but at least I tried. 

But I do think she is trying very hard to understand a lot of my physical health issues and mental health issues. I was visiting her and her family at Christmas-time and they met my every need. I could almost cry about it right now. I stayed in a nice hotel room that had a shower that was designed for handicapped people. I could take a shower without stepping over the side of a tub that would not have any bars to hold on to. I have been sleeping in a recliner for 8 years because of my hip/shoulder/neck arthritis, so she rented a recliner for me and the rent-a-center delivered the recliner to my room. She has never taken my illnesses/diseases this seriously before.

We made cookies from scratch in her kitchen, I had not made cookies at Christmas-time for a long time. When we went to an event on Friday night, my sister and brother-in-law called ahead of time to make sure there would be a handicapped parking spot for me. 

Last year I was all alone for Christmas for the very first time  ( long story ). My sister paid for everything while I was visiting her this Christmas.....hotel, airfare, recliner, meals, any events we went to, and any gifts I got.

In 2012 when I was broke and waiting 21 months for my SSD hearing, she supported me financially for about 9 months. I did not have to pay her back. I know that it was not a financial hardship for her to give me the money, but I still feel guilty about getting the money from her. 

My sister has MANY heath conditions of her own. She has RA, lupus, Sjogrens syndrome, the start of scoliosis, and had breast cancer in 1987. I know there are some things I don't even know about. All the auto-immune and inflammatory things. She is so much stronger than me and I am just a mess!  Maybe it is the prednisone and methotrelate that she is taking. How can she handle so well the things that I cannot ? I think it is definately because I have major mental illness in my corner of the boxing ring and she does not.

Wow, before 2009 I had my job at a bank for 24 years. A lot of shit has happened since then, life changing things. I used to have a real life....independence, confidence, a great job. Actually during the past ten years my life has changet significantly.

Well, this is all stuff that should be written on my www.depressiontribe.com website and not here.

Have a healthy week everyone. I know that we all just want one entire day where we actually feel great, that is my wish for everyone here.


----------



## UnXmas

kireikatt said:


> They're definitely helping with my sinus infection, at least. Today is day five of ten of being on them, but now I've got hemorrhoids and a yeast infection, which made work today very uncomfortable. I've been taking an Imodium or two a day and it's really not helping x.x


I used to take over ten Imodium a day before I had an ileostomy, along with Lomotil. Imodium's a very safe medication.


----------



## UnXmas

It sounds like both you and your sister have some pretty horrible physical medical problems, but I think you're right that a mental illness isn't just horrible in itself, it makes it hard to cope with everything else as well. And then because you're not coping, you feel even more depressed. 

But a mental illness is an illness - not your fault, even if some people view it that way. When I started taking antidepressants, I thought differently and acted differently. It didn't help all that much, but enough to show me that my thoughts and behaviours are determined by physical factors, outside of my control, as well as by my past experiences. I think things would have turned out very differently if I'd never had messed up brain chemistry. I don't know if that's a good thing or a bad thing, but it does mean the problems you have coping are not your fault.


----------



## afidz

feeling pretty blue today, but I don't really know why. I have  no reason to be. I just want to curl up in my blankets and lay in bed all day. Too bad my back wont let that happen,


----------



## ronroush7

Have a cold.


----------



## leezapeza

Feeling stressed gave up smoking 5 weeks. Ago today just before I had my op had a resection done of the terminal iliem and a wedge resection from meckels diviticulum in healing very well and it seems to be working in still in a flare or active but I havnt had any bad days buttttt I'm having a hard time at night with the no smoking so I'm eating instead I'm scared I'm gonna get fat again I was big before I got this Crohn's the only good thing about it


----------



## Ann Morgan

UnXmas said:


> It sounds like both you and your sister have some pretty horrible physical medical problems, but I think you're right that a mental illness isn't just horrible in itself, it makes it hard to cope with everything else as well. And then because you're not coping, you feel even more depressed.
> 
> But a mental illness is an illness - not your fault, even if some people view it that way. When I started taking antidepressants, I thought differently and acted differently. It didn't help all that much, but enough to show me that my thoughts and behaviours are determined by physical factors, outside of my control, as well as by my past experiences. I think things would have turned out very differently if I'd never had messed up brain chemistry. I don't know if that's a good thing or a bad thing, but it does mean the problems you have coping are not your fault.


For some reason it is very important to me to know and feel like I am " a good person". And for some reason it is important for me that others know I am a "good person" too. I think this good person/bad person thing started when it became apparent that I indeed had mental health issues. I think I felt like I was a "bad person" because I was/am sick inside of my head. I still think about and can't get it out of my head. I am not perfect and I know that I have probably done or said things that hurt family or people in my life, but everyone else probably has too.
Have a Safe and Happy New Year.


----------



## Ann Morgan

afidz said:


> feeling pretty blue today, but I don't really know why. I have  no reason to be. I just want to curl up in my blankets and lay in bed all day. Too bad my back wont let that happen,


I think that the holidays sometimes make some of us "blue". It can be a time of celebration or a time of loneliness.  But there is nothing wrong with curling up in some blankets, just so a person doesn't do it every single day ?  Last year I was all alone at Christmas-time for the first time in my life, so that fact will always be in my memory every December 25th.

Take it easy and rest if you can. I sort of understand about your back ?  I have been sleeping in a recliner for 8 years because of hip, shoulder and neck arthritis. I am never comfortable, no matter where I am. I wish my doctors would just give me prednisone, hydrocodone and some sleep medication, but all they do is send me to physical therapy which is ineffective and expensive.


----------



## Ann Morgan

leezapeza said:


> Feeling stressed gave up smoking 5 weeks. Ago today just before I had my op had a resection done of the terminal iliem and a wedge resection from meckels diviticulum in healing very well and it seems to be working in still in a flare or active but I havnt had any bad days buttttt I'm having a hard time at night with the no smoking so I'm eating instead I'm scared I'm gonna get fat again I was big before I got this Crohn's the only good thing about it


Is there a thread for terminal ileitis here ?  I have Ulcerative Colitis, but recently I had a CT Scan and MRI for my Urologist ( we are monitoring a small cyst on my right kidney). But something showed up on either the CT Scan and/or MRI that said there could be a possibility of me having terminal  ileitis. I just had a colonoscopy in August and it came back normal, labs were normal too. I am not sure if a colonoscopy can go as far as the terminal ileum ?  I had a new Gastroenterologist this year and I don't like him. What are the symptoms of terminal ileitis ?
Thanks for listening.


----------



## Ann Morgan

Good Afternoon Australia !


----------



## Ann Morgan

Good Afternoon New Zealand !!!


----------



## Ann Morgan

Good Evening Canada !!!


----------



## BlackButterflies

Hi Guys

So I was doing okay until the last few weeks then things starting bouncing back and forth.
I have been off of my anti-depressants at the advice of my doctor and psychotherapist for a month and a half now and doing good - I am however relearning how to handle and cope with emotions and feelings as they numbed me out quite effectively.  
A year and a half ago my former boss (a 63 yr old man) came to me with a question which I had no answer for.  This angered him - he grabbed a fistful of my clothing and forcible dragged me whilst I stumbled to the end of my work area (about 15/20ft).  I have never been good with any kind of abuse - I freeze or I run away and this time I froze up and just dumbly let him do this.  This was later reported to HR where I was called a liar - he wouldn't look or speak to me and I even ended up apologizing to him (now that is fucked up).  He ended up having the option of early retirement or demotion and he chose the first.  
Fast forward to yesterday - another fellow employee brings up his wrongful dismissal and how work just tossed away a great man... I lost my shit.  I became so incredibly angry and full of rage and I had no idea how to handle that.  I became upset with myself for not being able to handle the emotions, as well as the fact I had no backbone with this incident.  Then I started to cry.  I tried to stop but ended up leaving work and going for a 1 hour drive then a 1 hour nap in my truck because I didn't know what to do and no one was available.  
I just called in to work for today as well I am so afraid I am going to lose my work because I am unreliable right now.  With oil dropping the fear of layoffs is imminent - I am a walking stress case.  I didn't think stress could aggravate Crohn's symptoms but now... today I am in horrible fucking stomach pain - it hurts when I breathe even.  It feels like everything constricted into a tight ball - nothing is moving. I am so worried about work and money and my husband's possible disproval over this absence but I feel sick in my guts so badly today.  I am thinking of going to the hospital soon to get something for this pain or just to get things to relax. I really just want to work and live in peace with no pain or stress. I've been cutting people out to reduce the possible stressload - I can't handle it right now.  I have been taking my meds and eating the right things I am so frustrated that I cannot get into remission and something like this just throws me back into the pit. 
Okay that's enough. Thanks for listening out there.  Happy New Year.


----------



## leezapeza

Ann Morgan said:


> Is there a thread for terminal ileitis here ?  I have Ulcerative Colitis, but recently I had a CT Scan and MRI for my Urologist ( we are monitoring a small cyst on my right kidney). But something showed up on either the CT Scan and/or MRI that said there could be a possibility of me having terminal  ileitis. I just had a colonoscopy in August and it came back normal, labs were normal too. I am not sure if a colonoscopy can go as far as the terminal ileum ?  I had a new Gastroenterologist this year and I don't like him. What are the symptoms of terminal ileitis ?
> Thanks for listening.


Hi well I started off having pain when I ate anything feeling sick wanting to vomit and very sore right side my bowels were loose then I wouldn't poo for weeks the pain got really bad i lost weight couldn't eat much and when I did I threw it back up Wanting too sleep all the time doctor thought it was reflux at first but the pills didn't help so i went to the doctor again told him I was still loosing weight and I was in a lot of pain doubled over i thought it was my appendix my CPR came back high he rung me that night told me to get to the hospital they done ct scan and found an abseses there that was in July was when I found out I had Crohn's and I been in hospital 2 times since then last time they had to operate i kept getting then dam abscess so yeah I think a ct scan is your best bet in finding out good luck I'm new too all this and I'm still coming to grips with it


----------



## leezapeza

Happy new year guys and girls heres hoping this year is pain free  It 3am New Year's Day here in New Zealand


----------



## Ann Morgan

Happy New Year from Arizona....... it is 12:14am here.
Still listening to the fireworks outside and the sound of gunshots that people shoot into the sky ( during some holidays here.....very stupid and very dangerous).  Just took my night-time meds. Good Night.utahere:utahere:


----------



## leezapeza

Ann Morgan said:


> Happy New Year from Arizona....... it is 12:14am here.
> Still listening to the fireworks outside and the sound of gunshots that people shoot into the sky ( during some holidays here.....very stupid and very dangerous).  Just took my night-time meds. Good Night.utahere:utahere:


Happy new year Anne here's hoping it's a better year it was very quite where I live I couldn't even hear the drunks from the pub at the back of me lol


----------



## lilac

happy new year everyone! Hope you all have a good 2015 

I feel terrible. Throat ulcers and tenesmus pain mainly - counting down the days until my first infliximab infusion next fri, wish it was tomorrow


----------



## UnXmas

Ann Morgan said:


> Happy New Year from Arizona....... it is 12:14am here.
> Still listening to the fireworks outside and the sound of gunshots that people shoot into the sky ( during some holidays here.....very stupid and very dangerous).  Just took my night-time meds. Good Night.utahere:utahere:


Shooting at the sky?! Where I am, in England, there were a lot of gun shots when I was out with my dog today because there are often hunts on New Year's Day. My dog's terrified of loud noises so she's not had a good time over the last twenty-four hours!

Happy New Year everyone, especially people in hospital and people on their own, including any lurkers who read this forum but don't post.


----------



## ronroush7

Dealing with a cold.
Lost control both last night and this afternoon.
 2


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## Ann Morgan

I am always bloated now. Ugh.


----------



## Gram214

Hi all..I hope eveyone had a wonderful holiday season. Now it's back to reality and the long cold winter ..at least here in PA !!  
Question..do any of you suffer ..and I DO mean suffer ...from restless leg syndrome ? It's to the point that every night after dinner it gets so bad I'd be willing to try anything to stop the craziness. I am on Ropinorol at HS and it did work for about a year but it must be wearing off. Nobody can understand the problem unless they experience it first hand. I am so bone tired and can't stop moving my legs ! Could it be a side effect of any meds I'm on ?
 Monday ( Tomorrow ) is my Remi..can't wait. Having nausea... rectal bleeding...ughhhh. I wonder if I soon need to lessen the time between treatments. But then again..who could afford that..I must pay 20 % co-pay above what my Medicare pays. Sigh
  Well ..hope the new year is good to all of us ! Talk soon and God Bless


----------



## UnXmas

Gram214 said:


> Hi all..I hope eveyone had a wonderful holiday season. Now it's back to reality and the long cold winter ..at least here in PA !!
> Question..do any of you suffer ..and I DO mean suffer ...from restless leg syndrome ? It's to the point that every night after dinner it gets so bad I'd be willing to try anything to stop the craziness. I am on Ropinorol at HS and it did work for about a year but it must be wearing off. Nobody can understand the problem unless they experience it first hand. I am so bone tired and can't stop moving my legs ! Could it be a side effect of any meds I'm on ?
> Monday ( Tomorrow ) is my Remi..can't wait. Having nausea... rectal bleeding...ughhhh. I wonder if I soon need to lessen the time between treatments. But then again..who could afford that..I must pay 20 % co-pay above what my Medicare pays. Sigh
> Well ..hope the new year is good to all of us ! Talk soon and God Bless


Hi, I know how _ awful_ Restless Leg Syndrome is! I'm fortunate because I get it very rarely, usually only following general aesthetics. So for me it comes along with insomnia and feeling generally awful from surgery. It doesn't help that it's at those times when I'm either in hospital and my meds are under the doctors' control, or at home but unwilling to risk high doses of my sleep meds when I'm that sick and on various other meds besides my usual ones - because otherwise I'd probably try knocking myself out with high doses of my amitriptyline to send me to sleep!

And I do mean I'm fortunate to only get it rarely, because I do appreciate how terrible it is, and it's one of those things that doesn't sound terrible when described to people who've never had it - including doctors, and of course it's not dangerous, so that makes it low on doctors' lists of properties too. But at its worst, I get a whole-body version, where I am literally getting in and out of bed constantly, for hours. And insomnia is something I can't stand generally anyway (hence my love of amitriptyline).

One thing that helped me was having someone massage my legs. A nurse told me about this, and she massaged my legs and I managed to fall asleep. The following night she didn't have time, but a very kind patient massaged them instead, and I fell asleep then too, but only briefly then I was awake and restless again.

A couple of things that can help with minor cases: put a pillow between your knees, or try sleeping with your legs elevated - really elevated, like several pillows or cushions under them (I even lay on a sofa with my legs sort of sideways up the back of the sofa).

Check if it is being caused by any of your medications. Some allergy meds and sedatives can cause it.

Because I only get it under circumstances, I've never really looked into treating it with medication. I think there are a couple of other things besides ropinirol used for it. (What does HS mean btw?) There's a thread on Restless Leg Syndrome somewhere on this forum, I'll see if I can find you the link. If I did get it more frequently, I'd probably opt for knocking myself out with amitriptyline first, but that's my solution to a lot of things and perhaps not the most sensible!


----------



## UnXmas

Here's a list of possible causes, including medications that have it as a side effect:

http://www.nhs.uk/Conditions/Restless-leg-syndrome/Pages/Causes.aspx

(The sedatives/allergy meds I was thinking of were antihistamines.) 

List of treatments, including a couple of other medications besides ropinirole are here, but looks like the main ones are the same class of meds as ropinirole, so if that's not helping, not sure if these others will, but there's a few others mentioned too (and apparently my method of ignoring the restless leg symptoms and just trying to induce sleep is actually an officially recognised treatment!):
http://www.nhs.uk/Conditions/Restless-leg-syndrome/Pages/Treatment.aspx

And a couple of threads on this forum:

http://www.crohnsforum.com/showthread.php?t=48655&highlight=restless+syndrome

http://www.crohnsforum.com/showthread.php?t=45928&highlight=restless+syndrome

Hope something in there helps you.


----------



## Gram214

Awww Thank you for you response UnXmas ! HS means Hour of sleep or before bed. I'll try the suggestions you made and I will see about getting some amitriptyline . Like I said I'd be willing to try whatever it takes. At my age anything that feels good makes sense anymore. Thanks !


----------



## MirrorBride

How am I feeling? Currently, trying to come to terms with the diagnosis. At 21, it's honestly scary! It doesn't help that I have anxiety in general, either. I don't want to feel terrible forever or lose out on life because of this disease. Trying to stay positive.

And I'm not sure if it's the steroid or the fact that my body actually feels like eating, but every 3-4 hours since my diagnosis I have been SO HUNGRY. 

Hoping for remission to come soon and stay long!


----------



## sully1102

Since mid-December, I've been feeling better. After surgeries in October and November to address issues with fistulas & abscesses, I've finally hit a point of getting energy back. I wake-up read to go, although I immediately spend roughly 20-30 minutes on the toilet first thing in the morning. I do have some on going pain/discomfort from the recovery of the abscesses, but I try to push myself a little more each day. During the holiday season this meant being on my feet at parties, shopping, or being being social. Granted this pushing usually means that I'm a mess at the end of the day and just need to sit down. But, I made it! I always traveled with extra underwear and abdominal pads in case I drained through everything. 

But, the last few mornings I've noticed a large amount of fresh blood filling the toilet every morning during my first poop, which the wife always finds disturbing.

Oh, and I had sex! Woo hoo! Was it great? I doubt it, but it was great to have the connection with my wife again.

Now I'm just counting the days until my colostomy surgery on the 20th. Looking forward to not having to pack extra underwear when I leave the house or finding the nearest bathroom whenever I enter a store. I know a bag brings its own issues, but I think the benefits outweigh the day-to-day stuff I live with now.


----------



## UnXmas

MirrorBride - life will go back to normal again. Realistically, you will probably have times when the disease demands your attention, and times when it doesn't and you'll find you can concentrate on other things. It varies a lot from person to person, but it's not so very terrible a disease - most people with Crohn's can have a career, a family, a social life, or whatever you had planned for before getting ill. Steroids can definitely cause hunger, but that's not always a bad thing. Crohn's can sometimes kill people's appetites, so it doesn't do any harm to put a bit of weight on when you're able to do it easily, and for some it makes a nice change to want food again. On the other hand, if you really don't want to gain weight, there are a lot of people in that situation too, and many threads in the treatment and diet forums about how to eat healthily when on steroids.


sully - I'm always ready to tell people how much getting a stoma has helped me. I think it's much easier to adjust to when your quality of life sucked beforehand. I hope you'll post any questions you have in the surgery/stoma sub-forum.


----------



## ronroush7

Dealing with a cold and the mistake of eating fried food over the weekend. 

 2


----------



## sully1102

UnXmas - thanks! I read your blog and it was very informative. Compared to most stoma patients, I seem to be in a good spot and have the opportunity to make this elective. Outside of the small window of time to find a toilet, my health is pretty good. I finally reached a point where I said that Crohn's is now having an impact on my quality of life. Everyone has their fingers crossed that having an ostomy for 9-12 months will give the Entyvio time to work its magic and let my colon rest. 

Met with the surgeon today, and we're all thumbs-up. He's saying less than 90 minutes in the OR, and only admitted for 3 nights (baring any complications). My success goal is the Boston Spartan Race at the end of August. When I was healthy & training, it took me a little over an hour and a half. Mentally shooting for under 2 hours this time.


----------



## UnXmas

sully1102 said:


> UnXmas - thanks! I read your blog and it was very informative. Compared to most stoma patients, I seem to be in a good spot and have the opportunity to make this elective. Outside of the small window of time to find a toilet, my health is pretty good. I finally reached a point where I said that Crohn's is now having an impact on my quality of life. Everyone has their fingers crossed that having an ostomy for 9-12 months will give the Entyvio time to work its magic and let my colon rest.
> 
> Met with the surgeon today, and we're all thumbs-up. He's saying less than 90 minutes in the OR, and only admitted for 3 nights (baring any complications). My success goal is the Boston Spartan Race at the end of August. When I was healthy & training, it took me a little over an hour and a half. Mentally shooting for under 2 hours this time.


I don't have a blog, maybe you mixed me up with someone else? Or do you mean one of my threads - many of my posts get so long they probably should be blogs.  I'm glad you found something helpful anyway!

It's great you have a goal to work towards. A stoma shouldn't prevent any kind of fitness, training or sports (well, of course there's always the possibility of complications, but that's always true of Crohn's with or without a stoma). Three nights in hospital sounds about right if all goes well. Mainly they'll be wanting to keep you there until they see the stoma start working, so the sooner you're able to start eating and walking, do so, they will get your digestive system going. And while you're in hospital you'll have time to learn to care for the stoma. I know some people read up on it and watch videos on YouTube to learn how to empty and change bags, but I was never good at learning that way, I learn by doing, and after changing the bag a couple of times while a stoma nurse directed me, it all came together very easily.


----------



## UnXmas

I'm feeling relieved today because I have finally got into a routine of eating enough to gain weight without making myself terribly ill all the time. I still have to eat an awful lot. I am back to eating tablespoons of peanut butter as a staple, but it's bearable now I have a stoma as the symptoms are so much easier to deal with. I still worry that it'll cause another blockage, and mad at my doctors for carrying on insisting I gain weight when they know eating so much caused a blockage and perforation before.


----------



## Polaris

I was able to take a shower today and.. eat! without pain or vomiting. A rare day.


----------



## ronroush7

stelarjess said:


> I was able to take a shower today and.. eat! without pain or vomiting. A rare day.


That is great


----------



## neohic

I've been physically feeling better than I have in what I can remember for years. Mentally, still worn out from hating my job. After having my gallbladder out a few weeks ago I'm finally getting back to business as usual for my typical activities. Still some bruising and a sore belly by the end of the day, but regardless doing better. The small meals I was used to before the surgery have now gotten smaller... I find myself feeling bloated and uncomfortable more if I let myself get full. More of an incentive to eat less, I guess. Overall, feeling pretty decent for the first time in a long while.:emot-dance:


----------



## Imran844

Well i was diagnosed july last year. And im actually phisically okay but emotionally im not im always stressed and finding school even harder considering im starting my exams and its hard like every little problem becomes even bigger considering im such a worrier...


----------



## UnXmas

Ann Morgan said:


> I am always bloated now. Ugh.


Hi Ann, you haven't posted for a while, hope you're doing ok.


----------



## lenny

18 year old son is feeling "okay".  He's been on MTX since mid September.  10 days ago, he had pretty bad stomach pain that lasted a few days and blood in his stool (once).  The docs haven't gotten back to me about that.  Was it just a bump in the road or does blood mean a flare?  He had a very small appetite for about a week, too..like 500 cals a day.
His last FCP was 24 in mid November.


----------



## Imran844

A stool that has blood in it and has only been passed once could be a bump on the road but if he has a loss of appetite the chances are higher that he could have a flare up. Last year becuase i was thirteen and diagnosed so young i was given a comic to explain my crohns and apparently you should avoid smoking stress and fizzy drinks and you should have probiotic drinks like actimil a few more modulen ( see docters if you havnt been prescribed to it) and yoghurt and of course a plain cheese sandwich and a balanced diet


----------



## leezapeza

Back to work yesterday Afta my op feeling ok but sore at end of shift but loved being back


----------



## IofNewt

Hi again all,

Christmas took a lot out of me. Very tired, but enjoyed myself immensely with very few repercussions from what I ate, which was nice after over a year of issues. But I did catch the damned flu in the new year. 

Still doing better, although doing so without any sort of zing or energy.

Hope everyone had a great Christmas.


----------



## leezapeza

Feeling better than I had in ages I'm back at work as of 2 days ago lil bit sore at the end of the shift but I'm happy stress free and mostly pain free  oh yeah not smoking is going well too I've ^ 5 my self )))


----------



## lilac

annoyed, mainly. Had first infliximab infusion week and a half ago and felt like I was getting better but had a PJ day today because I felt pretty bad. Dissapointed as I thought this would stop. Second infusion this Friday. Hoping todfay was just a blip


----------



## aideen33

Had my humira last week, so was feeling a bit more "normal" on Saturday.... got brave and did grocery shopping AND a trip to the park with the kids. This as it turns out was more than my body was prepared to handle so today was a lounge around and sew kind of day lol


----------



## Ann Morgan

MirrorBride said:


> How am I feeling? Currently, trying to come to terms with the diagnosis. At 21, it's honestly scary! It doesn't help that I have anxiety in general, either. I don't want to feel terrible forever or lose out on life because of this disease. Trying to stay positive.
> 
> And I'm not sure if it's the steroid or the fact that my body actually feels like eating, but every 3-4 hours since my diagnosis I have been SO HUNGRY.
> 
> Hoping for remission to come soon and stay long!


Sorry to.hear about your diagnosis at such a young age. I was 36 years old when my symptoms started, but I was 46 when I got a diagnosis. 9 years !

Yeah, I have been on steroids a couple of times for other health issues and I was starving ALL the time !  I think I gained four pounds in one week ?

I have anxiety too, plus Major Depressive Disorder. I have Ulcerative Colitis. 

You sound like a very upbeat person with a great attitude. Have a healthy and happy day. : - )


----------



## Ann Morgan

How am I feeling ?  Still bloated every day. I have gained back 5 pounds. I lost 30 pounds last year because of changes in my Ulcerative Colitis symptoms, I just lost my appetite. The first 20 pounds came off quickly and I was not trying to lose weight ( I just did not feel good because of my symptoms changing ).  Well, fast forward to NOW.....my symptom's are back to what they normally were for many years. Now I have my appetite back....ahhhhhh!!!!!  One of my doctors wanted me to lose 20 MORE pounds too. Can't get rid of this daily bloating. And I crave chocolate brownies and stuff like that ! Eeek, does menopause mess a gal up as much as PMS !  ?Hormones suck !  : - 0


----------



## leezapeza

Ann Morgan said:


> How am I feeling ?  Still bloated every day. I have gained back 5 pounds. I lost 30 pounds last year because of changes in my Ulcerative Colitis symptoms, I just lost my appetite. The first 20 pounds came off quickly and I was not trying to lose weight ( I just did not feel good because of my symptoms changing ).  Well, fast forward to NOW.....my symptom's are back to what they normally were for many years. Now I have my appetite back....ahhhhhh!!!!!  One of my doctors wanted me to lose 20 MORE pounds too. Can't get rid of this daily bloating. And I crave chocolate brownies and stuff like that ! Eeek, does menopause mess a gal up as much as PMS !  ?Hormones suck !  : - 0



Hang in there aye


----------



## Axelfl3333

How do I feel?haven,t been for 6 days!pretty full,I,ve just taken a piece of melon,they,ll be broadcasting a shipping warning soon.hopefully.


----------



## leezapeza

Axelfl3333 said:


> How do I feel?haven,t been for 6 days!pretty full,I,ve just taken a piece of melon,they,ll be broadcasting a shipping warning soon.hopefully.



Try having pure orange juice thAts ment to get the bowels moving


----------



## leezapeza

I'm still feeling well been 8 weeks since my resection I'm hoping the GI will tell me I'm in remission I'm sorry to here u guys r still doing it tough chin up thinking of u guys


----------



## Axelfl3333

The eagle has landed now let's hope it stops!


----------



## Ann Morgan

Axelfl3333 said:


> The eagle has landed now let's hope it stops!




I was looking for the proper emotican. I don't know if this one is appropriate ?  

Everyone have a good weekend.:cheers:


----------



## UnXmas

Been three days without codeine. I have lots left, just testing my will power and reducing my tolerance. Somehow now I've got this far I feel more motivated to see how long I can go without it for. I don't mean it's easier because the withdrawal is over; no matter how long I go without codeine, I always feel worse than when I'm taking it. But when I'm taking loads I think I may as well make the most of it, but now it feels like an endurance test that I don't want to ruin unless I  need to. That will probably last maybe two more days at most.  When I next have a day where I feel physically and/or emotionally bad I'll take some, especially since I'll have some to spare having had this break.

The withdrawal itself hasn't been too bad. I had an upset stomach but that happens often so I can't even say it was from withdrawal. But I have no energy and ache all over and can't concentrate and have no motivation to do anything and nothing seems interesting. But I've done this enough to know this isn't withdrawal, as it never improves. It's just how I feel without codeine, and if I never take it again, I won't stop feeling like this. So I have no plans to extend this abstinence beyond the next time I feel particularly bad (and that is almost certain to happen in a day or two, I feel terrible all the time, and extra-terrible about once every couple of days).


----------



## ronroush7

Yesterday, I went to the bathroom probably seven times and had two accidents.  Not feeling the best today.

 2


----------



## UnXmas

Still taken no more codeine and have got through most of today, so I'll try and wait until tomorrow. Physically I don't feel as bad as on some of the previous occasions when I've stopped it, but I feel a lot of anxiety now, which is always worse in the evenings, and would really like some to calm me down. Or I just want it to be tomorrow morning when my anxiety will be less anyway. Have some things to distract me for this evening though, hopefully.


----------



## lilac

UnXmas said:


> Still taken no more codeine and have got through most of today, so I'll try and wait until tomorrow. Physically I don't feel as bad as on some of the previous occasions when I've stopped it, but I feel a lot of anxiety now, which is always worse in the evenings, and would really like some to calm me down. Or I just want it to be tomorrow morning when my anxiety will be less anyway. Have some things to distract me for this evening though, hopefully.


have you tried relaxation techniques? Hope it wears off soon


----------



## UnXmas

Well that didn't work. The anxiety just got too much so I took some, and now feel so much better.

Relaxation techniques really aren't my thing. I have tried - hypnotherapy, yoga, breathing exercises, all the usual stuff, many times over. Medications and surgery are the only ways I've been able to successfully treat any of my symptoms, physical and mental. (I have multiple physical medical conditions.)

I don't have any official diagnosis of anxiety, and at the moment it's bad because I'm on prednisone. Antidepressants have been incredibly helpful for me, so I'm considering asking my doctor about meds for anxiety.

I do find things such as getting enough sleep but also getting up early in the morning, walking in the countryside and cuddling with my dog help, but not in the way meds can do, not enough when it's this bad.


----------



## sully1102

Had my first colostomy last Tuesday, got home Friday night. I wish I had done this surgery months, if not years, ago.

I'm sleeping without night sweats. I can sit still & walk without discomfort. I'm eating an unrestricted diet like a fiend. I have a libido. And, of course, there's no fear of pooping myself.

It's taking effort not to go out of the house at this point, but I know that the I need to respect the recovery process. I'll be out & about again, soon enough.

It amazes me that the benefits of the surgery were so immediate. Just giving my bowels/anus a few days of rest has made my life normal.

Sure, I have some soreness from undergoing the surgery, but everything was done laparoscopically, so the there are only 3 small wounds plus the stoma itself.

Fingers are cross that this rest will give the Entyvio the opportunity to work its magic, and I'm getting re-connected by the fall.


----------



## UnXmas

Good to hear sully!


----------



## Ann Morgan

How am I feeling ?
Doesn't everyone here have psychological issues related to their disease ?
I feel inferior when I am around my sister.
She has many heath issues, but she just told me in a text that she "copes with the pain".  Why can't I cope with my physical health issues like she can ? ( She has RA and I have arthritis/osteoarthritis.) This Major Depressive Disorder that I have just sucks the life out of me, physically, emotionally and mentally. She never talks about her "woes". She must just hide it and keep it all inside of her ( or only shares with her husband). I don't even want to see her tomorrow. I am very sensitive and it seems that even the smallest thing will effect me emotionally. She said "she copes with the pain". Well, good for her. She must be Superwoman or something. Lucky her. Good Night.


----------



## Scifimom

Bleh! I am in pain since Friday afternoon. First I thought it was something I ate, then I thought it was bloating from something I ate, then I thought I could just sleep and get better. Third day in a row, bloody diarrhea, and pain. My next injection is tomorrow and my next appointment is February 20th. Lets hope I will not end up in ER earlier


----------



## LtHuff

Feeling like crap.  Lower right abdominal pain, so much so that I have to lay back in my chair as far as possible because any bending makes it worse.  To top it off one of our dogs got loose last night and ran to our barn and I got to hear it kill one of our barn cats.  Not a good sound.

Good news is that I have a new GI and we are set for colonoscopy this Friday and I had blood work and CT Scan last week so he can see where I am at.  The CT Results were not good with a lot of inflammation in the small intestine near the ileocecal valve.  Also have stranding of the adjacent mesenteric fat and several reacticve mesenteric lymph nodes.  Hopefully we can get a new concoction going for medication to relieve me of this inflammation and pain.


----------



## ronroush7

A lot of pressure physically.

 2


----------



## syzygy

Getting back on track here.  After a month-long flare after starting Remicade, things settled down and a CT scan showed reduced inflammation and no sign of fistula.  GI is going really well, but I've been developing some peripheral neuropathy in my left arm.  My GI doc freaked out and had me cancel my first maintenance dose of remi this week, but then told me to reschedule when I met with her today.  She now thinks it's probably unrelated nerve impingement.  I was a actually able to get a same-day appointment with my primary, who agreed that a neurology consult makes sense.  Baby steps forward, but this tingling and numbness is for the birds...


----------



## n00b

Felling pretty good actually.

Humira is working well and enjoying life.
Still have the odd bout of the big D but it does not bother me any more.


----------



## duh panda

Not really sure how I'm feeling. Had an MRI Wednesday thinking it'd come up pretty normal - at least nothing unusual. There's been a bit more pain and it seems to have shifted but has remained in the range of what I've considered normal over the years. 

Got the call on results today and knew it wasn't exactly good when the nurse asked how I was feeling, twice, after I first responded I was feeling ok - nothing out of the ordinary or having changed since our appointment the week before. 

Well, turns out despite feeling a decrease in pain since summer after switching to Entyvio and MTX Crohn's runs rampant and there is fluid build-up outside of the intestines in the abdominal cavity of unknown origins. Starting with a round of 2 different anti-biotics; hopefully it's just some underlying infection. 

Certainly frustrated as this sets back plans to move back to CO (had plane ticket ready and everything), scared out of my mind and trying to keep from thinking about the possibilities if it is not an infection, but glad I've got people beside me and a Dr. who has never thrown in the towel despite my inconsistencies in whether I would continue under her care or finally be able to manage and switch my care fully over to CO practitioners.


----------



## ronroush7

Going to the bathroom for my fourth or fifth time.  I don't care about the things I should care about.

 2


----------



## Hrogers

New to the forum so this is a first post for me. Feeling pretty great actually, just got over a cold and classes have been a joke so far this semester so fairly easy life at the moment. That's probably going to change soon, but I'll just enjoy this while it lasts.


----------



## Bob from Midwest

In the ER earlier this week.  Doc said no blockage but I beg to differ.  At least a partial.  Eyes playing tricks on me, and very nauseous.  I know there is better days ahead, but I don't know when.  Hope to start 6MP next week.  A low point right now, though.


----------



## Bob from Midwest

In the ER earlier this week.  Doc said no blockage but I beg to differ.  At least a partial.  Eyes playing tricks on me, and very nauseous.  I know there is better days ahead, but I don't know when.  Hope to start 6MP next week.  A low point right now, though.


----------



## ronroush7

Stick in there, Bob.

 2


----------



## UnXmas

Hrogers said:


> New to the forum so this is a first post for me. Feeling pretty great actually, just got over a cold and classes have been a joke so far this semester so fairly easy life at the moment. That's probably going to change soon, but I'll just enjoy this while it lasts.


Welcome to the forum. Good to see some happy people here.


----------



## UnXmas

Bob from Midwest said:


> In the ER earlier this week.  Doc said no blockage but I beg to differ.  At least a partial.  Eyes playing tricks on me, and very nauseous.  I know there is better days ahead, but I don't know when.  Hope to start 6MP next week.  A low point right now, though.


Did they run any tests to check for a blockage?


----------



## ronroush7

Everytime I turn around I need to go to the bathroom,


----------



## ronroush7

Very gassy.


----------



## neohic

Been doing well overall but today has been a little rotten... literally. I really don't drink milk and I haven't for quite a while. Not sure what got into me today but a couple glasses today just sounded good. Big mistake! :stinks:


----------



## ronroush7

Had some blood in my stool the last couple of days.  The doctor wants some blood work and then wants to see me.  One day it was red.  Today it was orange.

 2


----------



## lilac

Having pain from my mouth to my stomach. As soon as I woke up I was in tears. Been 16 months flaring and two ifliximab infusions in and I feel like I'm never going to get better. Was thinking of speaking to doc about antidepressant but then think the only reason I'm down a lot now is because of my crohns. Once I'm better, I'll feel myself again. Just depressing.


----------



## Gram214

Oh dear...why the long wait to start Remicade may I ask ? Hopefully it will soon kick in and get you back to being yourself again. Just pamper yourself and let your body heal.
 Why not check with your doc about an antidepressant ? Do what you can to feel better...and don't be ashamed . I too have been down that road of feeling I'd never get better . Now I take pain pills ..antidepressants...whatever it takes to make me feel good .


----------



## lilac

GI tried me on humira and methotrexate first and they didn't work. Im still on methotrexate for some reason. Think I just feel as a mental health professional I should know how to deal with depression without drugs but I might mention it to doc


----------



## duh panda

Go in for an MRI tomorrow to see whether or not some fluid build-up in the abdomen has decreased/ gone away, have dropped 7 lbs. in 9 days sooo... fingers crossed it's just from that being treated and the fluid going away.

First day in over 2 weeks I can tolerate wearing jeans again (although we'll see how long that lasts, usually a couple hours and I'm so over it and back into something soft and roomy). 

Kinda frustrating that Crohn's seems to be flaring worse then ever, but it would make a bit more sense if it's been due to a string of fungal/ bacterial infections the past 6  months that like to play hide and go seek while showing minimal to no infection symptoms. Oh the joys of the immune suppressed.


----------



## lilac

good luck with the MRI


----------



## duh panda

Well, MRI wasn't as good as it could be or bad as it's been. Doesn't look like fluid is due to an abscess and there was a 25% decrease following the antibiotics. Bumping pred. back to 20mg and another round of antibiotics with instruction to get to the ER if seeing the fever rise to 101 or pain increases for interveneous treatment. 

Meet with doc. next Tuesday with another MRI in a couple weeks to follow up. Good thing the MRI techs aren't half bad to look at  and it's a bit fun to dress up in scrubs for an afternoon now and then. 

Sounds a bit dire, but I think the luck and well wishes certainly helps! Not as bad as it could be and a bit of a relief to still be looking like crohn's/ immune complications more then any other cause - THIS I can be patient for and deal.


----------



## ronroush7

I am going to doctor tomorrow.  I have seen blood in my stool three times in the last week.  Because of going to the bathroom numerous times I didn't get to bed until a little after three thirty.  I kept falling asleep this afternoon.

 2


----------



## Ann Morgan

neohic said:


> Been doing well overall but today has been a little rotten... literally. I really don't drink milk and I haven't for quite a while. Not sure what got into me today but a couple glasses today just sounded good. Big mistake! :stinks:


Yeah, today I ate Pringle Potato Chips......big mistake for me too :duh::duh:


----------



## Ann Morgan

lilac said:


> Having pain from my mouth to my stomach. As soon as I woke up I was in tears. Been 16 months flaring and two ifliximab infusions in and I feel like I'm never going to get better. Was thinking of speaking to doc about antidepressant but then think the only reason I'm down a lot now is because of my crohns. Once I'm better, I'll feel myself again. Just depressing.


If you are thinking about depression it wouldn't hurt to mention it to your doctor. I suffer from Major Depressive Disorder and recently I was having some feelings that I thought "oh, no big deal". Well, they soon started to become a big deal. PS: Don't ever have a Primary Care Physician prescribe you any medication for depression, go to a Psychiatrist, because Psychiatrists will monitor you a lot better. Well, I am no doctor, so don't take this as medical advice.....just sharing some personal experiences with you that I have had. :Flower:


----------



## Ann Morgan

duh panda said:


> Well, MRI wasn't as good as it could be or bad as it's been. Doesn't look like fluid is due to an abscess and there was a 25% decrease following the antibiotics. Bumping pred. back to 20mg and another round of antibiotics with instruction to get to the ER if seeing the fever rise to 101 or pain increases for interveneous treatment.
> 
> Meet with doc. next Tuesday with another MRI in a couple weeks to follow up. Good thing the MRI techs aren't half bad to look at  and it's a bit fun to dress up in scrubs for an afternoon now and then.
> 
> Sounds a bit dire, but I think the luck and well wishes certainly helps! Not as bad as it could be and a bit of a relief to still be looking like crohn's/ immune complications more then any other cause - THIS I can be patient for and deal.


Yeah, I had  Physical Therapist once who was not bad to look at either, and I got a great neck massage from him during every visit :lol:  ( I have arthritis in my neck, VERY limited mobility in my neck ).


----------



## Ann Morgan

ronroush7 said:


> I am going to doctor tomorrow.  I have seen blood in my stool three times in the last week.  Because of going to the bathroom numerous times I didn't get to bed until a little after three thirty.  I kept falling asleep this afternoon.
> 
> 2


 I am glad you are getting in to see your doc. :hang:


----------



## ronroush7

Thanks.

 2


----------



## Ann Morgan

I did not know where to ask this. But my cousin has colon cancer and I would like to know if crohns/Ulcerative colitis and colon cancer can be connected to each other on any way?
She HAS had terrible diabetes since she was a child.


----------



## Gram214

I have read the risk of getting colon cancer is somewhat higher with IBD 's 
We must be careful and have regular scopes done ..that way if anything does arise it could be taken care of early.


----------



## ronroush7

Ann Morgan said:


> I did not know where to ask this. But my cousin has colon cancer and I would like to know if crohns/Ulcerative colitis and colon cancer can be connected to each other on any way?
> She HAS had terrible diabetes since she was a child.


I believe so.

 2


----------



## UnXmas

Ann Morgan said:


> I did not know where to ask this. But my cousin has colon cancer and I would like to know if crohns/Ulcerative colitis and colon cancer can be connected to each other on any way?
> She HAS had terrible diabetes since she was a child.


I'm sure it would be ok for you to start a thread on this in the General IBD forum.  If you put something like "IBD and colon cancer" in the thread title, you should get some good advice from people on the forum.

Is this a recent diagnosis for your cousin?


----------



## duh panda

I often post on here when things are low, which for the last few years seems to be where things rest. 

But when I think of this forum I think of it as a place of hope, love, compassion, education and growth.

Crohn's and UC are both very unforgiving diseases, almost a decade later and I still struggle to comprehend the full scope of challenges faced. When I think of Crohn's I think of fear, pain, surgery, hospitals, nausea, depression, anger, frustration, isolation, exhaustion, needles, medication, fading hope, the unknown, and so on.

Currently, feeling absolutely lost while waiting to gain more information regarding current circumstances and determine a complete plan of action; but smiling through it all. It's okay to not be okay as long as we're not giving up!

Love to all of your bellies!


----------



## Gram214

I think we all feel lost at times. ..every day is a struggle. Many people with good health just don't realize it's the most prized possession ! Keep smiling !


----------



## Ann Morgan

What is worse......terrible constipation or horrible diarrhea ?  Ahhhhh !


----------



## Gram214

Uh oh ! Having issues ? I can't tell you when constipation was ever a problem for me..if so it has been a long long time. The other problem however is not fun at all. 
I am having bad days lately...had Remicade yesterday. Hoping it kicks in soon .
Overjoyed that I am retired and usually home and close to a bathroom. I light a scented candle and have reading material on hand...makes for a more pleasant stay.:lol:


----------



## Ann Morgan

Today I am constipated and I hate it. I have been pushing all day to go to the bathroom. My hemorrhoids are terribly miserable. And I am so bloated that I feel like a balloon that is ready to explode. My stomach is gurgling too. My Ulcerative Colitis has taken over my entire life. I'm tired.


----------



## Ann Morgan

My sister is retired now and is spending 3 months in Arizona where I live. She and her husband are busy almost every day site-seeing, traveling, going to sports events and parades and art festivals. I have been invited to a lot of these activities but I have had to decline. There is much for me to consider before I can commit to an activity/outing .How long will I have to stand up? How far will I have to walk? Will I be out in the direct sunlight? How long is the drive to get there? And, yes, then the most important question......will a bathroom be nearby?  I have been able to meet up with her and my Auntie for coffee at a coffee shop, also one day we went to some Thrift Stores. Then we have played Scrabble and went out to eat. Oh, we went to Costco twice. I hate having my choices limited because of my arthritis and my anxiety and my colon disease. It makes me mad. But most of all it makes me sad. Like I said above.....I am tired.


----------



## lilac

out hospital a week, had blood transfusion and all the usual stuff and now having blood in my stools and I'm pretty sure gastritis...after infliximab and methotrexate on friday. Mood has improved though, think that's because Im sleeping better and I found out im going to be an aunty for the first time :dance:


----------



## UnXmas

lilac said:


> out hospital a week, had blood transfusion and all the usual stuff and now having blood in my stools and I'm pretty sure gastritis...after infliximab and methotrexate on friday. Mood has improved though, think that's because Im sleeping better and I found out im going to be an aunty for the first time :dance:


I'm so happy for you! Not for the things in the first part of your post, obviously, but I love being an aunty, and hope you will too. :smile: And sleeping well makes_such_ a big difference for me as well, I feel terrible when I've not slept well. I just hope you can get the physical symptoms sorted soon. Take care.


----------



## UnXmas

I'm feeling ok. I'm trying to find the right painkillers for me, the ones I'm taking just aren't enough anymore. At the moment I'm struggling to make my prescriptions last as long as they're supposed to. My doctor usually lets me have them early if I run out, but she can't just keep on doing that. She's helping me try out others, but then each one takes a while to try out, then I have to wait for the follow up appointment to tell her it's not working. :frown:

My attempts to gain weight are getting better, mainly because I no longer have to have the doctor weigh me every week with the threat of admitting me to hospital if I've not gained. I am gaining, but very slowly and with fluctuations.


----------



## kikig

Like UnXmas, I'm having a rough time gaining weight. Its like one step forward, two back.
I had a rough weekend, spent Friday night completely bloated and some pain. Not helped by stress, knowing they were shutting down the water in my building on sat for maintenance for four hours. I was tired on Sat evening, but managed to do something. Then Sunday, cooked a wonderful dinner but just before I ate, started getting bloated and pain.
Today, I feel tired and a bit annoyed that my weekend was destroyed (again), but planning on going to the gym after work - I need muscle!!


----------



## UnXmas

Doesn't the gym undo your weight gain?


----------



## Annan

I am feeling generally unwell and extremely tired.


----------



## kikig

Well, I want to gain proper muscle weight, not just weight alone. 

Plus, the exercise helps my digestion, sleep and appetite so its win win. I'm not in the gym to lose calories so I worked with a personal trainer to get a programme that is concentrating on muscle fitness rather than how-many-calories-am-I-burning.

That, and I have to take on 120g of whey protein per day as I have protein losing enteropathy. 

Some days, balancing everything is all the exercise I need :ytongue:


----------



## lenny

My son appears to feel better than he has since being diagnosed in 3/13, but it's really hurting him to have a bowl movement.  It's 15 minutes of his day, but by the look on his face when he comes out of the bathroom, it must be pretty bad and he feels tired for an hour or so after.


----------



## UnXmas

Annan said:


> I am feeling generally unwell and extremely tired.


Hi Annan, welcome to the forum and this thread. Is it Crohn's making you feel unwell and tired?


----------



## UnXmas

kikig said:


> Well, I want to gain proper muscle weight, not just weight alone.
> 
> Plus, the exercise helps my digestion, sleep and appetite so its win win. I'm not in the gym to lose calories so I worked with a personal trainer to get a programme that is concentrating on muscle fitness rather than how-many-calories-am-I-burning.
> 
> That, and I have to take on 120g of whey protein per day as I have protein losing enteropathy.
> 
> Some days, balancing everything is all the exercise I need :ytongue:


I do make sure I go for a walk every day, not because I want muscle (I'm female, btw, I think that can make weight-related goals different), just to make sure my body keeps moving. I have physiotherapy too. It's all just stretching. I don't think slow walking and stretching burn too many calories, so I guess I am using exercise in a similar way to how you use the gym, to try and be healthy while gaining weight. But I am very, very underweight.


----------



## brooklyn23

Hi, kikig, I'm a woman who is trying to gain muscle (because my case of Crohns is mild, I'm also having a hard time losing the fat I want to lose too...) I was very fatigued this weekend and didn't get any workouts in. Plus DLS messed with my sleep, I don't think I can make it to taekwondo tonight.


----------



## brooklyn23

In other news, as for how I'm feeling: 

Rolls up in the office like, what up, I'm hoarding all the acetaminophen in the first aid kit.


----------



## sully1102

Been 7 weeks since my ostomy. Feeling great. Think I've worked out the kinks with the bag, but I've been hitting the gym, put on 15 lbs, and no longer have fatigue.

Wish I had done this years ago.


----------



## duh panda

Sully, That is awesome! Hope you keep making strides.

My mom coaxed me into a Jane Fonda workout this afternoon - seeing as I'm still in full flare and always struggling with weight loss it was refreshing! Certainly needing to rest after (hence chilling on the forum right now) but feeling more alert then I usually do in the afternoons. Oh the joys of a workout whatever it may be.  

I've gotta say there's just something about those leotards and tube socks that can't be beat which make it so easy to play a little, be ridiculous and not feel quiet so serious or bogged down with medical stuff.


----------



## kikig

brooklyn23 said:


> Hi, kikig, I'm a woman who is trying to gain muscle (because my case of Crohns is mild, I'm also having a hard time losing the fat I want to lose too...) I was very fatigued this weekend and didn't get any workouts in. Plus DLS messed with my sleep, I don't think I can make it to taekwondo tonight.


Also female, weight 46kgs, BMI of 16 (quite badly underweight). Its difficult! Some evenings I am so beat after work and preparing a dinner, I just sprawl on the sofa, and I have come to accept some days are just like that.

When I go to the gym, I have a 30min workout on the treadmill - its a hill climbing programme to build leg muscle, then maybe some 5kg weight exercises and I'm done. I keep the routine short so its all over pretty quick. :ylol:

Made it to the gym last night, so I feel better today but hormonal, which means my reactions to food and stress are going to be unpredictable.
Oh well


----------



## UnXmas

My bmi was 10 last year, at my lowest. It's about 12 or 13 now I think.


----------



## kikig

UnXmas said:


> My bmi was 10 last year, at my lowest. It's about 12 or 13 now I think.


Ouch, thats low! I hope it continues to increase UnXmas!


----------



## Susan2

UnXmas said:


> My bmi was 10 last year, at my lowest. It's about 12 or 13 now I think.


Focus on the fact that it's improving, rather than what it is, and don't worry that the improvement is slow. As with dieting, a slow, steady improvement is much more sustainable than a rapid increase or decrease.


----------



## brooklyn23

I think my BMI is about 28. I'm trying to bring it down but I haven't been feeling well enough to work out in a while. I'm surprised that I'm not losing more because I'm not eating much.


----------



## lenny

Son's was 15.4, now it's 18.4.


----------



## UnXmas

I gained 0.5kg in the last week, which for me is a huge amount. Why is my weight so random? I never know what it's going to do next. And I'm worrying that half a kilo could disappear again just as easily.


----------



## Ann Morgan

UnXmas said:


> My bmi was 10 last year, at my lowest. It's about 12 or 13 now I think.


Wow !  I won't even say what MY "bmi" is, but it is really high. I have been battling I obesity off and on for 30 years in my adult life. Lowest weight has been 129 when I was 20 years old. Highest has been 232, later on in my adult life. Lost 30 pds last year ( wasn't trying to, but I did). I have already gained 7 pounds back because my appetite is back....ahhhhhh. I am 177 now. In 2010 I was around 154 and that was a perfect weight for me....a normal weight for me. I would like to be around THAT weight again someday. Wierd thing is that I eat a lot of sugary foods and my glucose level is always 100 or under ( wierd)  Well every Specialist I go to takes my blood, so I am sure that if something was wrong thy would tell me. 

Going to my old Gastroenterologist this Wednesday. He is no longer on my Insurance plan, so I am just going to pay cash for this one visit. I value his opinion. I don't know if this is unethical, but I want to talk to him about my new Gastroenterologist and my colonoscopy last year and my medicine advice. I don't know if I can talk to one doctor about another doctor, but I will NOT be returning to the new Gastroenterologist that I went to last year because I don't like him.

Sorry this is so.long.
Thanks for listening.


----------



## UnXmas

Are you trying to lose weight at the moment, Ann Morgan? 

I think it should be fine to ask one doctor's opinion of another doctor. It will be up to your old gastroenterologist to decide whether or not to answer and what to say. I don't know if it's the same in the US, but here doctors from different hospitals have often met each other, and not just the ones in the local area; I have specialists in London and my local doctors have met them at conferences etc. And some of my doctors love being rude about other doctors! So I would just go ahead and ask; whether it's ethical or not will be up to your old doctor, as what you find out will be at his discretion.


----------



## brooklyn23

Today is less than wonderful. I was doing better up until travelling to Chicago over the weekend. I started feeling sicker the day after I arrived. I'm home now, feeling crampy, gurgling in my intestines. Last night and the night before I was having joint aches again, which seem to be better today. I've gone to the bathroom three times this morning, all solid but urgent. Kinda fatty? Oil in the toilet. Some mucus but not as much.


----------



## buttER

Not a good start to the day, but I battled on and I had a good day (up to now!). It's going to be a busy week so I hope I am up to it. 

If you had a crystal ball, would you use it?


----------



## Ann Morgan

King of Orange said:


> Not a good start to the day, but I battled on and I had a good day (up to now!). It's going to be a busy week so I hope I am up to it.
> 
> If you had a crystal ball, would you use it?


I would not use the crystal ball.  : - )


----------



## UnXmas

Today I'm _not_ feeling hungry.


----------



## buttER

UnXmas said:


> Today I'm _not_ feeling hungry.


Is that good or bad?


----------



## HangryGinger

King of Orange said:


> If you had a crystal ball, would you use it?


I'm pretty sure I would. It would make planning things so much easier. :runaway:


----------



## UnXmas

King of Orange said:


> Is that good or bad?


Bad, because I'm terribly underweight and have to eat loads to gain any.


----------



## UnXmas

Today I'm having a break from codeine to reduce my tolerance so I feel awful.


----------



## UnXmas

UnXmas said:


> Today I'm having a break from codeine to reduce my tolerance so I feel awful.


At 4pm I've decided that break was long enough.


----------



## FrozenGirl

Feeling sucky, running to the bathroom a ton to pass mostly mucus(with blood). Decided to call my doctor to find the office is closed until Monday. Ugh.


----------



## brooklyn23

Grumpy. I think I'm PMSing. So I'm also playing the fun game of "intestinal cramps or uterus cramps?" Really gassy today. Had no BMs yesterday, finally made myself go this morning, a couple of blobs of mucus were along for the ride. Can I just go home and curl up with my cat?


----------



## FrozenGirl

Period pain sucks! I just finished that, I feel for you.


----------



## brooklyn23

Ugh, it's so annoying  It's just like "hey, I hope you wanted your entire torso to hurt today!"


----------



## HangryGinger

Oh that really blows. . Any of the rest of you ladies find symptoms increase while pmsing? I always have increased joint pain and diarrhea right before my period starts. :|


----------



## brooklyn23

Still planning to attempt a Couch to 10K session today. I ran my first mile since my maybe-flare started yesterday, so I'm trying to figure out where to start. Maybe Week 3? Any time I can shave off will help get me ready for my races.


----------



## duh panda

Reading through this latest string of posts makes me feel so at home! Hadn't had a period for years until January. Never felt so confused by something that is supposed to be so normal. With crohn's symptoms I generally feel like: WhatUp! I got this. With cramps and having a period I'm like :yfaint: what... what is this? Is it crohn's getting worse? oh, no? This is normal? wonderful.


----------



## Ann Morgan

Okay, I ate an Arby's Ruben Sandwich for dinner tonight and that is not something I am supposed to eat. Ugh. Also ate Rice Krispie Treats. Ugh. So, I am bloating and having acid reflux. My own fault, but the sandwich and treats tasted great. I get so tired of eating boring, flavorless food.

Anyhow, saw my old Gastroenterologist today to get a second opinion about some things that my new Gastroenterologist said. My new doctor said to discontinue my Lialda. My old doctor said to keep taking it every day. I love my old doctor and I trust him. I will start taking my Lialda again tomorrow. My old doctor is not on my Insurance plan, so I paid cash for my appointment today. He wants me to give a stool sample for a c-diff test. Since he is not on my Insurance plan he wrote some paperwork to give to my Primary Care Physician so that my PCP can order the test and so my Insurance plan will pay for it.

I am never going back to new Gastroenterologist. I can see my old Gastroenterologist once a year and just pay cash for the appointment. I just had a colonoscopy last year, so I should not need another one for a while. 

New doctor did colonoscopy last year, so I have those results. And new doctor will give me a Lialda prescription and arrange the c-diff test. So it looks like everything that needs to be taken care of is being done.

Boy, a person really needs to self-advocate regarding their healthcare or things may never get done. I want to make the best choices I can for my colon ( and my acid reflux). 

Thanks for listening.
Oh, yeah, my paperwork said to lose weight and exercise ! Ahhhhhhhh!


----------



## brooklyn23

I'm going to go ahead and say as of 9:30 this morning, I feel phenomenal. 
Why? Who knows. 
Maybe it's because I'm getting back to running and I'm feeling well enough to go back to martial arts and that's putting me in a good mood? 
Maybe it's because I'm now two weeks on Pentasa and I'm starting to feel relief? 
Maybe it's that I just bumped up my Effexor dose, because I was still suffering from minor panic? 
I don't know, and I don't know how long it will last. But I'm just going to have my own little party right now.

All I'm feeling is a little bit of low cramping that could very well be the start of my period. WHO CARES. :dusty:


----------



## lenny

Son is feeling great.  EXCEPT when he goes.  It hurts and he feels tired after.  GI seems totally disinterested.


----------



## brooklyn23

Starting to feel crampier as the day goes on. But I'm still pushing through.


----------



## buttER

Soooooo tired. 
This morning I dropped my daughter at school, went to the supermarket, went to the doctor to get a prescription, did some light cleaning, had lunch in front of the TV, more cleaning, picked daughter up from school, had some friends round, went to pick up other daughter from nursery, and got back home exhausted. All trips done by bicycle, my legs were aching so much today.
I want to go back to work, but I can't even get through a normal day without work!

Is anyone else like this?

Good night!


----------



## Ann Morgan

King of Orange said:


> Soooooo tired.
> This morning I dropped my daughter at school, went to the supermarket, went to the doctor to get a prescription, did some light cleaning, had lunch in front of the TV, more cleaning, picked daughter up from school, had some friends round, went to pick up other daughter from nursery, and got back home exhausted. All trips done by bicycle, my legs were aching so much today.
> I want to go back to work, but I can't even get through a normal day without work!
> 
> Is anyone else like this?
> 
> Good night!


I am tired/exhausted/fatigued all the time ?8


----------



## ronroush7

Getting through the prep for my colonoscopy. 

 2


----------



## liscol

:thumbdown:Feeling worried, I think I an starting to have bad side effects from humira. I already had to stop Aza, mp6 and methotrexate for the same reason.


----------



## UnXmas

King of Orange said:


> Soooooo tired.
> This morning I dropped my daughter at school, went to the supermarket, went to the doctor to get a prescription, did some light cleaning, had lunch in front of the TV, more cleaning, picked daughter up from school, had some friends round, went to pick up other daughter from nursery, and got back home exhausted. All trips done by bicycle, my legs were aching so much today.
> I want to go back to work, but I can't even get through a normal day without work!
> 
> Is anyone else like this?
> 
> Good night!


I'm not like that. I couldn't do a fraction of that! You must have loads of energy even to attempt that, never mind actually finishing it all. You're doing great! Just make you don't push yourself too much. 

I posted this the other day on the Extreme Fatigue thread ( http://www.crohnsforum.com/showthread.php?t=57159&page=11 ) :



> I can do more when it's things where I can plan my own schedule. So I walk my dog every day, and have family come to visit, etc. But I walk my dog at the time I have most energy. I'm a morning person, so I get up early, wait for my meds to kick in, then go out, maybe for fifteen minutes, maybe longer, but if I get tired (or any other symptom gets too much) I come home and rest. And it's ok having family round, because I still nap during the day when I need to, eat when I feel most able, etc.
> 
> But when I have to do things at a set time, it's exhausting and I get nervous whenever I have things scheduled coming up - hospital appointments, usually. Then they might coincide with the time I desperately need sleep, and it's awful.
> 
> It's been a few years since I last had what came close to a normal life - university, forcing myself to have a social life - and there's no way I could do half that now. But even back then, the evenings were the worst, I'd literally be crying with exhaustion because I just wanted to go to bed but made myself go for nights out instead.


----------



## buttER

UnXmas that is me too. I don't like things being planned and I prefer the mornings over the afternoons. It is usually a case of getting through the evening (cooking a meal, getting the children to bed) and then crashing.

Still, I can do alot more than I could even 6 months ago, but yes if I overdo things then I really pay for it the next few days. Unfortunately overdoing things still seems to be just trying to have a normal day! I know what you mean about crying from exhaustion, I was on Wednesday evening. By last night (Thursday) I was feeling really ill just from tiredness. I hope I get a lie-in on Saturday morning.
The only social activity I have is choir once a week , and that stops at a friendly time of 21.00. I am so pleased with myself that I can already do that. It's a lovely bunch of people and we have a laugh and usually hit the wrong notes.
And now I need to clean the rest of the house because my sister is coming to visit (I usually need a good reason to do it properly).

I hope you and everyone else is having a good day.

ps we had a partial solar eclipse today (80%) and I was expecting it to get a bit darker than it did. I didn't really notice any difference to any other foggy day here!


----------



## HangryGinger

King of Orange said:


> Soooooo tired.
> This morning I dropped my daughter at school, went to the supermarket, went to the doctor to get a prescription, did some light cleaning, had lunch in front of the TV, more cleaning, picked daughter up from school, had some friends round, went to pick up other daughter from nursery, and got back home exhausted. All trips done by bicycle, my legs were aching so much today.
> I want to go back to work, but I can't even get through a normal day without work!
> 
> Is anyone else like this?
> 
> Good night!


Holy crap... All those trips by bike!? No wonder you're tired. I'd be exhausted too..assuming I'd get it accomplished. :blush:


----------



## ronroush7

Had a bad cough.

 2


----------



## Ann Morgan

I ate proper foods yesterday, so today ( so far) my tummy is feeling alright. I stayed home yesterday and so all of the foods I ate were prepared at home. If I prepare foods at home I know what the ingredients are in the foods. I drank my smoothie, ate cereal and milk, and ate a sandwich yesterday.  I have not had a bowel movement yet today, so that is nice because a lot of days I am going to the bathroom several times a day. My trigger is grease and fat in foods, these foods give me terrible diarrhea. And, believe it or not, I cannot eat vegetables or fruits ! Well the only fruit I can eat is bananas. The only vegetable I can eat is potatoes. Unfortunately when I go out of my home I sometimes like to eat food with FLAVOR, but will have to pay the price : - (

Thanks for listening. I hope everyones tummies have a great weekend!  : - )


----------



## cantthinkstr8t

I have passed out 3 times since last night.  DH has me sanctioned to the couch.  My fall last night, broke my tail bone-luckily we have a fluffy, comfy couch.


----------



## buttER

HangryGinger said:


> Holy crap... All those trips by bike!? No wonder you're tired. I'd be exhausted too..assuming I'd get it accomplished. :blush:



:lol2::lol2::lol2:

I have an electric bike, there is no way I could do it otherwise. And there is not much choice: I have no car, and public transport is good but the bike is quicker. And my bike waits for me and does not follow a timetable so I do not have to worry if I have to do a toilet dash.


----------



## UnXmas

Ann Morgan said:


> I ate proper foods yesterday, so today ( so far) my tummy is feeling alright. I stayed home yesterday and so all of the foods I ate were prepared at home. If I prepare foods at home I know what the ingredients are in the foods. I drank my smoothie, ate cereal and milk, and ate a sandwich yesterday.  I have not had a bowel movement yet today, so that is nice because a lot of days I am going to the bathroom several times a day. My trigger is grease and fat in foods, these foods give me terrible diarrhea. And, believe it or not, I cannot eat vegetables or fruits ! Well the only fruit I can eat is bananas. The only vegetable I can eat is potatoes. Unfortunately when I go out of my home I sometimes like to eat food with FLAVOR, but will have to pay the price : - (
> 
> Thanks for listening. I hope everyones tummies have a great weekend!  : - )


Is it the fibre in fruits and vegetables that gives you problems? (If you also have trouble with whole grain cereals, nuts and seeds it's probably the fibre.) If it is, 
have you tried avocados? They're a fruit that's as easy to digest as bananas. Stewed fruit and tinned fruit (except pineapple), and smooth vegetable soup may be ok too. And if you're ok with skinless potatoes, try sweet potatoes, swede, butternut squash and carrots, but cook them really well and then mash them. 

What sort of thing do you order when you eat out? There must be dishes you can eat safely, or at least ones where you can pick out the unsafe foods and still have a good meal.


----------



## HangryGinger

King of Orange said:


> :lol2::lol2::lol2:
> 
> I have an electric bike, there is no way I could do it otherwise. And there is not much choice: I have no car, and public transport is good but the bike is quicker. And my bike waits for me and does not follow a timetable so I do not have to worry if I have to do a toilet dash.



Ohhh ok. That's still a lot. Although I don't feel nearly so lazy and unproductive now. :redface:


----------



## brooklyn23

Feeling okay. A bit sore. Had my first BM in 3 days.


----------



## UnXmas

cantthinkstr8t said:


> I have passed out 3 times since last night.  DH has me sanctioned to the couch.  My fall last night, broke my tail bone-luckily we have a fluffy, comfy couch.


What caused you to pass out? Did you go to hospital?


----------



## ronroush7

Coughed an awful lot last night.

 2


----------



## buttER

It's been a good day, my sister is staying here for a few days, the children love her even if the younger one calls her Granny and not Auntie. We have been busy potting on vegetables inside and planting a few things in the garden. We had a little walk around the neighbourhood this afternoon to show my sister around.

If only this fatigue would go away, I don't know why it is suddenly so much worse (is it really because I lowered my Asacol dose?). Even a cola did not give me a boost. At least today the fatigue gave me more of an appetite - sometimes it makes me feel nauseous. 

Have a good day/good night everyone. Monday tomorrow -aarrgghhhh!


----------



## UnXmas

How did I manage to lose 1.2kg overnight? I'm seeing my doctor today and she'll probably weigh me; where did that 1.2kg go?! It's not too bad, as for the past week or so I'd gained around a kilogram, which is very fast weight gain for me. Is it water retention or something that causes such major fluctuations? I couldn't have burned off 1.2kg of fat (or muscle, since I don't have fat) in one day could I?


----------



## lenny

Son is still feeling good..knock wood, on his cycling diet, no meds.  Just mild joint pain occasionally and of course it still hurts to poop, though that's only once a day.  We should have his FCP results in about 5 days.  I'm quite nervous about that.


----------



## lisadc1

YUCKY...it is prep day for scopes and biopsies tomorrow. Ugghhh, there is never a way to make this stuff go down easily. And the scopes are not scheduled until 2pm...Earlier I thought I would starve to death, now I never want to see food again. :/


----------



## buttER

I cycled to the seaside today with my sister. It's only about 7 km away but that is the first time I have been there in over 3 years. What a great feeling and what a beautiful landscape. 

Of course that only tells half the story. I was quite nauseous especially by the end. At the beginning I wanted to head back home because I had urgency - luckily there was a visitor centre en route with good public toilets - and this afternoon/evening I have been so tired. Tomorrow will be tough.


----------



## brooklyn23

I know I'm getting my old life back because I have bruises from training. I still gotta be careful and I don't want to spar until my inflammation markers are down but it feels good to feel good.


----------



## Polaris

I had my psych exam with SSD (I think it lasted about 6 minutes) and tomorrow is my physical exam. Probably will last 5 minutes. Such a joke. 

But I feel ok overall.. second dose of Imuran taken tonight. Hoping for no side effects since I'm prone to reject any and all meds.


----------



## duh panda

Yesterday I got the call that I was approved for SSDI. This just isn't supposed to happen, I was expecting far longer then the 10 month fight it's been. On the crohn's front things are as up and down, left and right as they ever are - but everything else seems to be falling into place so I can live and lead my life the way I would like rather than having it ruled by medical pursuit alone.


----------



## brooklyn23

Higher pain today. Not unbearable, but noticeable. I wonder if it has anything to do with my nemesis - tight pants.


----------



## brooklyn23

Second not so good day in a row. I ended up leaving work early because I was having multiple (solid) BMs that left me with lingering pain.


----------



## duh panda

Feeling accomplished. Traveled 1000 miles and FINALLY got to see my S.O. for the first time in 7 months. Managed an appointment, grocery shopping, and picking up some stuff for the house - all with his help and eyes, I swear this man is getting quicker at spotting bathrooms then I am. Tired like no other, and muscles are certainly fatigued but nice to be pushing it a bit and see where things are at! Hope everyone's having a good week and find enjoyment in the little things.


----------



## kikig

Started out ok today but my stomach/intestines are making the most horrendous noises, and the office is sparsely populated so I am getting up and going to the bathroom every 5 mins to cover the noise.
My lymphedema is playing up, and I feel bloated and sluggish.
Ack, I just want to go home and hide


----------



## buttER

Colonoscopy in 2 days, first laxatives to be taken tonight. Why on earth do the tablets contain wheat?!! I only just realised an hour ago.


----------



## Ann Morgan

duh panda said:


> Yesterday I got the call that I was approved for SSDI. This just isn't supposed to happen, I was expecting far longer then the 10 month fight it's been. On the crohn's front things are as up and down, left and right as they ever are - but everything else seems to be falling into place so I can live and lead my life the way I would like rather than having it ruled by medical pursuit alone.


:dusty:


----------



## Ann Morgan

It is almost 2am on Wednesday, April 1st and I AM STILL AWAKE !
This hasn't happened in a LONG time !
It is a good thing that I am staying home tomorrow.............oh, yeah, I mean TODAY !


----------



## kikig

@Ann Morgan - I wish I was still in bed!

My weird tummy caused me issues all yesterday and I am exhausted today.
I'm almost afraid to eat anything except I am STARVING, and counting down to lunch time with a big whey protein shake.

I'm feeling somewhat reflective today - a bit "meh, why do i bother at all" and at the same time "if i can just shake off this exhaustion, i can do anything"


----------



## evaj

Hello everyone.  Was wondering if anyone has been diagnosed with multiple sclerosis that has crohns.  I had an mri. ..showed ms...second mri to confirm of spine. .waiting on results.remicade increased for arthritis in feet and ankles. Still painful but not as bad. I read that remicade can cause or increase risk of getting multiple sclerosis. Anyone's thoughts? ??


----------



## UnXmas

I don't have MS but have a medical condition that causes similar symptoms. But this forum has a support group thread for Crohn's and MS here: http://www.crohnsforum.com/showthread.php?t=48281


----------



## brooklyn23

Day is not off to a good start. Overslept, cramping. And I have so so much on my plate.


----------



## UnXmas

Today I'm feeling good because I got outside and walked my dog rather than asking my dad to even though it's really windy. I love the cold, love the rain, but winds I just don't like since I've been ill, it's just too much for my screwed up temperature regulation to deal with and I don't like branches falling down everywhere. For some reason we've had exceptionally windy weather the last few days so I've not been out much. Today I just really needed to go out though, and feel a lot better now.


----------



## ronroush7

Slept late because of coughing last night.

 2


----------



## Ann Morgan

evaj said:


> Hello everyone.  Was wondering if anyone has been diagnosed with multiple sclerosis that has crohns.  I had an mri. ..showed ms...second mri to confirm of spine. .waiting on results.remicade increased for arthritis in feet and ankles. Still painful but not as bad. I read that remicade can cause or increase risk of getting multiple sclerosis. Anyone's thoughts? ??


I had Optic Neuritis in my left eye in 2001. I took Solumedrol in an IV three times a day for three days ( at home ) and then 2 weeks of Prednisone. I guess a certain percentage of MS patients do get Optic Neuritis. In the past I have had an MRI and even a lumbar puncture to check my spinal fluid. I don't have MS. I think the lumbar puncture is the most sure way to tell if you have MS or not ?  I don't really know what caused my Optic Neuritis.


----------



## UnXmas

I think diagnosing MS is similar to diagnosing Crohn's in that you get some clear-cut cases and some.... really unclear. I don't have MS but at one point they suspected it. My lumbar puncture suggested it - it showed oligoclonal bands, whatever they may be. But then MRI of head and spine ruled it out. But MS is much more complicated than Crohn's because it has such a huge number of symptoms affecting so many different areas of the body.


----------



## buttER

UnXmas said:


> Today I'm feeling good because I got outside and walked my dog rather than asking my dad to even though it's really windy. I love the cold, love the rain, but winds I just don't like since I've been ill, it's just too much for my screwed up temperature regulation to deal with and I don't like branches falling down everywhere. For some reason we've had exceptionally windy weather the last few days so I've not been out much. Today I just really needed to go out though, and feel a lot better now.


A blast of fresh air can do the world of good!


----------



## buttER

I've got another half litre of moviprep to get down and then its off to bed. I have to say the prep is so much easier without a flare (at least up to now).


----------



## Ann Morgan

I ate cooked broccoli yesterday. I cannot eat raw or cooked vegetables. Diarrhea, bloating and cramping this afternoon. I am glad I stayed home today. Ahhhhhh.


----------



## ronroush7

Ate collard greens with the stalk.  Big mistake.

 2


----------



## Ann Morgan

5:30pm April 1st. My Primary Care Physicians office calls me, after hours, to tell me the Lab results from my stool sample I gave just yesterday. I have c-diff. How do I feel today .....sad. I thought my Lab results would come back in a week or two and say NO c-diff.  It is April 2nd now at 12:04am and I am going to bed.


----------



## kikig

i am so tired the last few days, literally unable to do anything from 8pm in the evening. my iron levels were fine but i am just so lethargic and everything feels like an effort.

due for a minor surgery next week - removing skin tags and moles, but have to go under general anesthetic. very much not looking forward to the impact of those drugs


----------



## UnXmas

I got my latest DEXA scan results today: not good at all. T score -4.0


----------



## brooklyn23

Still less than great today. Strong cramping in all my sore spots. The fatigue game is strong today. I can barely keep my eyes open.


----------



## cantthinkstr8t

I am exhausted again.  I slept 18hours yesterday.  That is not an option today-I have dr appointments.  My PCP is thinking about directly admitting me to the hospital.


----------



## brooklyn23

Concluding a week of not feeling so hot. I can already feel that the bits of red pepper that were in my breakfast are going to cause hell. I can feel the pain but have not had to run to the bathroom yet. :/ I actually took a half a suppository of bisacodyl last night because I was so backed up and was so uncomfortable. 

My body has two modes - three times a day or every three days.


----------



## FrozenGirl

Anxious, waiting for test results that will hopefully be in on Monday.


----------



## rebootlou

Marijuana for one year at age 17; intake was daily, multiple, heavy and strong.  After college, completely stopped to seek job.  Massive gut pain, quelled by high dose prednisone during hospitalization.  High anxiety pushed my predisposition into full blown Crohns in combination with no agent to control my generalized anxiety disorder.  My belief, stopping marijuana cold turkey, plus high anxiety over job search,  began the cascade of physical breakdown.  My belief, if I never stopped the herb it would have never occurred.  Humira modulates the disease beautifully for me.  Don't touch herb but VERY infrequently but it has seriously effective medical use for the combinations of digestive disorders lumped into the aggregate diagnoses called IBD, IBS.


----------



## Ann Morgan

UnXmas said:


> I got my latest DEXA scan results today: not good at all. T score -4.0


After you mentioned your T-score I had to pull out my DEXA scan results from December 2014.

Lumbar spine....

L1    -1.6

L2.    -2.8

L3     -3.9

L4     -3.2

Total.    -2.9

On the bottom of my report it says FRACTURE RISK :HIGH.

I take a D3 Vitamin each day. I am supposed to be taking Fosamax once a week but have been very, very lazy about taking it. I also have Spina Bifida Occulta in my lumbar spine ( a low-lying tethered spinal cord).....it is a birth defect.

And my sister wonders why I worry so much about falling !!!!!!!   I was in Idaho last December walking on ice and snow at night just so we could look at Christmas lights at the Botanical Garden !!!!! My brother-in-law had to hold my arm to walk me out to their car so I would not fall on the ice.    Crazy.    I am glad I live in Arizona.


----------



## Ann Morgan

brooklyn23 said:


> Concluding a week of not feeling so hot. I can already feel that the bits of red pepper that were in my breakfast are going to cause hell. I can feel the pain but have not had to run to the bathroom yet. :/ I actually took a half a suppository of bisacodyl last night because I was so backed up and was so uncomfortable.
> 
> My body has two modes - three times a day or every three days.


I miss eating food with FLAVOR !
Everything that is good for my tummy is so boring to eat.
My sister was in town recently. We went out to eat one day but I made sure that I would be going back to my apartment right afterwards just in case I had diarrhea.

PS: Yeah, last year I found out there were things I absolutely could not eat at an airport restaurant.... fish and chips....French fries....Cole slaw.....chicken salad sandwich. I guess I am stuck with smoothies, cereal and milk and macaroni and cheese. :boring:

I WANT MEXICAN FOOD !


----------



## UnXmas

Ann Morgan said:


> After you mentioned your T-score I had to pull out my DEXA scan results from December 2014.
> 
> Lumbar spine....
> 
> L1    -1.6
> 
> L2.    -2.8
> 
> L3     -3.9
> 
> L4     -3.2
> 
> Total.    -2.9
> 
> On the bottom of my report it says FRACTURE RISK :HIGH.
> 
> I take a D3 Vitamin each day. I am supposed to be taking Fosamax once a week but have been very, very lazy about taking it. I also have Spina Bifida Occulta in my lumbar spine ( a low-lying tethered spinal cord).....it is a birth defect.
> 
> And my sister wonders why I worry so much about falling !!!!!!!   I was in Idaho last December walking on ice and snow at night just so we could look at Christmas lights at the Botanical Garden !!!!! My brother-in-law had to hold my arm to walk me out to their car so I would not fall on the ice.    Crazy.    I am glad I live in Arizona.



My family, my parents especially, and doctors treat me like I'm super-fragile, which I suppose I am. I know my T score of - 4.0 (spine and hips, and somewhere else too I think, I don't have the results to hand right now) means osteoporosis - do you know if that is very severe osteoporosis? My balance and coordination are deteriorating due to my other medical condition, so I fall often. My doctor has arranged for someone to come and install rails and things so I don't fall in the shower - and I'm still young!


----------



## lenny

Son is currently experiencing steroid anger.  It's awful to be around and I know it must be a lot worse to experience in your own head.


----------



## brooklyn23

Doc's apt this morning was so useless. He said he wasn't concerned about the mucus or fatigue, and is saying it's probably IBS and gave me an anti spasmodic to take as needed. I don't know if it will do anything for me. Also he seemed utterly unconcerned by the irregularity of my bowels 3-4 times a day or not at all for 3 days. WHO KNOWS. I DON'T. 

*headdesk*

Maybe the blood tests will show something.


----------



## UnXmas

brooklyn- the official normal frequency of bowel movements is from twice a day to twice a week, so your doctor wouldn't be concerned since you're not far from this. What was "normal" for you? It sounds like he's ignoring your quality of life and would only be concerned by immediate threats to your health. I know the standard advice for me to give you in this situation is to suggest you seek a new doctor, but I'm sure you're already considering that and I know it's not always that easy to find one. I hope the blood tests are more useful.


----------



## brooklyn23

Prior to feeling bad? I was a once daily or every other day goer. And I'm really apprehensive about this antispasmotic, I'm worried it will make the constipation worse. Ugh... I'm just so frustrated right now. My quality of life has dropped drastically over the last 3 months and I'm trying so hard to get it back. And he's ignoring my pervasive pain too.


----------



## UnXmas

What's the antispasmodic?


----------



## brooklyn23

Levsin.


----------



## ronroush7

My stomach is acting up.

 2


----------



## buttER

Can it be that a colonoscopy (last thursday) delayed my period by 5 days? It has arrived slap bang in the middle of my Easter holiday. That plus the after-effects of the colonoscopy are leaving me feeling far from my best. But the benefits of being on holiday - there is a huge range of kids activities and I can just sit quietly on the side somewhere and rest! We have hired bikes for tomorrow though, I couldnt delay it any longer, please help me that I am up to it.

Have a good day and night everyone!


----------



## brooklyn23

Sneaky red pepper got into my lunch.  I'm starting to feel less than phenomenal.

ETA: Lol, guess what's _*not *_helping. The Levsin my doc prescribed.


----------



## ronroush7

Last night was the first time for a while that I soiled myself.

 2


----------



## leezapeza

Hi guys u havnt been on here in ages last year in November I had a vowel resection and it worked wonders I put on weight ( Norty me) but I havnt been in pain but in the last week or 2 I been going to the loo a lot and I'm not sure wat a fissure is but every time I poo or fart my bum stings and I feel sum thing odd their im going for a scope on the 28th should I just wait till then or go to doc?


----------



## buttER

Hi Leezapeza
It could be a fissure, you might have one and never notice except for a bit of blood on toilet paper sometimes, or they might be painful (sometimes very painful!) every time something comes out that end. 
If it's not bothering you then wait it out. If it is a simple fissure it is easy to treat with topical cream. If you are worried then of course go and see a doctor.


----------



## leezapeza

Thanks king it not too bad but last couple of days my poo has been runny without warning and it a very dark colour I might just wait it out I'm not in serious pain like I was last year and I'm eating well just thought  I'd mention it but I will keep a diary of what I'm eating so the GI can see


----------



## buttER

If a fissure is bleeding it is normally bright red.


----------



## leezapeza

Ok I've got none of that just stinging


----------



## Ann Morgan

I did not know where to ask this. 
I have Ulcerative Colitis does that automatically mean that I have a weakened immune system ?  I am confused about autoimmune diseases.
Oh, yeah, I have c-diff right now. Going to start Vancomycin soon. 
Have a good weekend everyone.


----------



## kikig

Feeling sore and sensitive after several biopsies, removal of some warts and sigmoidoscopy on thurs.
Ibuprofen helps, thankfully!


----------



## UnXmas

Ann Morgan said:


> I did not know where to ask this.
> I have Ulcerative Colitis does that automatically mean that I have a weakened immune system ?  I am confused about autoimmune diseases.


Maybe ask in the UC forum? http://www.crohnsforum.com/forumdisplay.php?f=69


----------



## ronroush7

I went to the bathroom six or seven times yesterday and twice so far today and I have a cough I haven't been able to shake.

 2


----------



## Ann Morgan

kikig said:


> Feeling sore and sensitive after several biopsies, removal of some warts and sigmoidoscopy on thurs.
> Ibuprofen helps, thankfully!



I have Ulcerative Colitis and I was told to avoid Ibuprofen. 
Is this true for everyone, or just for me ?


----------



## FrozenGirl

Not just you. People with IBD are generally told to avoid NSAIDs and only use Tylenol.


----------



## kikig

Oddly enough, ibuprofen works for me without too many IBD impacts as long as it is spioradic use for a short time.
I generally stay away from NSAIDs and Tylenol doesn't cut it in my case


----------



## lilac

out hospital again - was severely inflamed at colon and sigmoid, fluid round right hand side and constipated amoungst other things. was fun. wish meds would work. back tomorrow for infliximab


----------



## Ann Morgan

Started taking my Vancomycin today. I will take it 4 times a day for 14 days. Fun ?


----------



## buttER

Ann Morgan said:


> Started taking my Vancomycin today. I will take it 4 times a day for 14 days. Fun ?


I can think of things that are more fun!

Good luck, I hope the treatment works and it doesnt make you feel too poorly.


----------



## kikig

Really tired the last few days, and the NSAIDs are making my tummy run a bit now so temperature is also affected

Thank god tomorrow is Friday!


----------



## buttER

kikig said:


> Really tired the last few days, and the NSAIDs are making my tummy run a bit now so temperature is also affected
> 
> Thank god tomorrow is Friday!


What are your plans for the weekend then?

By the way do your employers/colleagues know about your illness?


----------



## duh panda

So Hoping that next week I'm told I can stop taking anti-biotics (one or both, I'd be find with either). Knew that flagyl could cause nerve pain and numbness in the extremities, but never understood just what that entailed till now. Plus, even if that wasn't a developing side effect I'm beyond ready to no longer have to get up in the middle of the night for that third dose. 

Regardless, today is a pretty good day! 48 hours out from taking my weekly Methotrexate injection and vomiting/ nausea/ fatigue has subsided. Energy levels are high enough where I may actually get something done beyond eating and showering - although House of Cards on Netflix may just draw out my afternoon "break" a while longer before tackling cleaning the bathroom and kitchen (If it's lucky).


----------



## kikig

King of Orange said:


> What are your plans for the weekend then?
> 
> By the way do your employers/colleagues know about your illness?


for better or worse, i have only given the high level to them. i work in an office full of men, for whom the common cold is a major illness 
nah, i'm underestimating them, they know roughly that i'm dealing with a crohns type thingy 

had some bad news, due to my crappy immune system (and other malfunctioning systems) i have hpv16, and entails more surgery in 6 weeks.

so now i have to face building myself up for another general anesthetic and its effects on my digestion. still only getting over the one last week which came with a free sigmoidoscopy

honestly, talk about kicking someone when they are down


----------



## brooklyn23

In general, I've been doing a lot better, to the point where I started being bothered by being overweight. Which is good, it means I feel well enough to worry about something other than illness. 

So, I'm back on weight watchers and trying to take advantage of the fact that fruits and veggies are free.... but it's definitely led to an uptick in pain. No change in BMs, but the pain is worse in two spots.  why, body?


----------



## kikig

@brooklyn23 - would juicing help to alleviate some of the pain caused by the fruits and veggies?


----------



## brooklyn23

It's possible, but hard to do during the work day and also not as filling :/


----------



## UnXmas

Twisted my ankle and it really hurts. I hate not being able to walk. I'm sitting here with ice on it.


----------



## UnXmas

> so now i have to face building myself up for another general anesthetic and its effects on my digestion. still only getting over the one last week which came with a free sigmoidoscopy


Do you mean that aneasthetics affect your digestion? What effects do they have?


----------



## UnXmas

brooklyn23 said:


> In general, I've been doing a lot better, to the point where I started being bothered by being overweight. Which is good, it means I feel well enough to worry about something other than illness.
> 
> So, I'm back on weight watchers and trying to take advantage of the fact that fruits and veggies are free.... but it's definitely led to an uptick in pain. No change in BMs, but the pain is worse in two spots.  why, body?


Maybe I'm the last person you'd want advice from on this as I'm very underweight, but if it's the fibre in fruits and vegetables that upsets you, I spent years having to eat a very low fibre diet, and I can make some suggestions of low fibre, low calorie foods (including low fibre fruit and vegetables) if you'd like them.


----------



## kikig

UnXmas said:


> Do you mean that aneasthetics affect your digestion? What effects do they have?


Firstly, stress from the whole idea. Then my body cleans itself 7hrs after the anesthetic by running a nasty fever for a few hrs. Not to mention the antibiotics and painkillers administered during surgery. Its a mess for up to a week.


----------



## buttER

UnXmas said:


> Maybe I'm the last person you'd want advice from on this as I'm very underweight, but if it's the fibre in fruits and vegetables that upsets you, I spent years having to eat a very low fibre diet, and I can make some suggestions of low fibre, low calorie foods (including low fibre fruit and vegetables) if you'd like them.


I would like to know which fruit and veg you eat on a low fibre diet, UnXmas!
I hope you will be able to walk again soon.


----------



## UnXmas

King of Orange said:


> I would like to know which fruit and veg you eat on a low fibre diet, UnXmas!
> I hope you will be able to walk again soon.


Hi King of Orange,

Bananas
Avocados
Any tinned fruit except pineapple
Stewed fruit (apples, pears, etc. - remove all skin and pips)
Well cooked root vegetables like carrots, swede and sweet potato (but some people will need to be careful of these, and cook them very well)
Smooth tinned vegetable soup
Fruit juices with no bits
Potatoes without skin

I know this one doesn't seem like a fruit, but I became a big fan of these tomato pastas when I was eating low-fibre, which count as one portion of the "5 a day" fruits and vegrtables people are supposed to eat: http://www.heinz.co.uk/en/Products/Pasta/Ranges/Spaghetti/Spaghetti-in-Tomato-Soup

Another weird one, babyfood fruit pots - they're yummy to adults to! They're healthy (usually pure fruit and nothing else) and most have no bits in at all
Here's one brand I've had: http://www.hipp.co.uk/products/our-baby-food-and-drinks/fruit-pots

And if you're wanting low fibre, low calorie foods besides fruit and veg, try low fat dairy (yoghurts, cottage cheese), white meat, fish, eggs, and smooth soups besides vegetable ones. Refined grains - white rice, white bread, low fibre breakfast cereals (Rice Krispies, Cornflakes and others) are pretty similar in terms of calorie content to their wholegrain counterparts (brown rice, brown bread, bran, wholegrain breakfast cereals), so grains on a low fibre diet shouldn't mean any more calories than grains on a high fibre diet.


----------



## UnXmas

My ankle's much less painful today, but everything I've read says it's best to rest it 'til all the swelling's gone down, so I'm still sitting here with my leg elevated with an ice pack on it.


----------



## buttER

UnXmas said:


> Hi King of Orange,
> 
> 
> Another weird one, babyfood fruit pots - they're yummy to adults to! They're healthy (usually pure fruit and nothing else) and most have no bits in at all
> Here's one brand I've had: http://www.hipp.co.uk/products/our-baby-food-and-drinks/fruit-pots


Thank you UnXmas, you have given me a few ideas. I had forgotten about the baby purees and you're right some of them are quite tasty. I'll put them down on my shopping list.

So not many vegetables to choose from then? I might have to start reading the posts on juicing. Although a vitamin pill just seems so much easier.


----------



## buttER

By the way, seeing as the post is How are you feeling today? 
Bad. In a way that I can't really describe. Slightly out of it, abdominal discomfort, tired, slightly nauseous. And I don't know why. I havent felt like this for a while. I need to get some rest on Sunday to survive the week next week.


----------



## HangryGinger

I woke up feeling pretty decent. The last couple hours or so I've started feeling kinda nauseated, headachey and just overall weak and ....gross?


----------



## UnXmas

King of Orange said:


> Thank you UnXmas, you have given me a few ideas. I had forgotten about the baby purees and you're right some of them are quite tasty. I'll put them down on my shopping list.
> 
> So not many vegetables to choose from then? I might have to start reading the posts on juicing. Although a vitamin pill just seems so much easier.


If you look for smoothed tinned soups, you can get a bit of variety of vegetables that way. And there are a few quite a few root vegetables besides the ones I mentioned above, e.g. parsnips and turnips. You might also be alright with butternut squash and aubergines. But they do have to be cooked until they're like mush.  Or at least they do at first until you can figure out your tolerance levels by gradually building them up. But vitamin pills are easier. Or supplements like Ensure.


----------



## brooklyn23

In general, I am doing a lot better. I have a lot of my health and stamina back. But I'm continuing to have pain in the same few spots, made worse after a BM. :/ Luckily it's all solid and about once a day, but damn it hurts.


----------



## ronroush7

Saturday was a bad day for me.

 2


----------



## UnXmas

I have a bad cold, a sore throat and a fever. Does anyone else get incredibly thirsty during a fever? It would make sense if I was dehydrated, but I'm drinking and drinking. And I get cravings. This time I want milk. With previous fevers I've wanted apple juice. And does anyone else get weird electric shock like feelings?

But my ankle is now better and completely pain-free. I'm pleased, because it was so painful I thought I'd done something awful to it that might take ages to heal.


----------



## Ann Morgan

It was recommended to me by my GI doctor that I not take my Questran during my Vancomycin. I tried this for three days and ended up with my very uncomfortable yellow watery diarrhea, so I started taking my Questran again and notified his office ( they will call me back). The Pharmacy paperwork says that I CAN take the Questran during Vancomycin as long as I take the Questran 3 hours before or 3 hours after the Vancomycin. I paid a lot of money for this Vancomycin, but I cannot be having yellow watery diarrhea every day for 2 weeks. I have to stay home and do nothing because I am infectious. Boring.


----------



## Ann Morgan

duh panda said:


> So Hoping that next week I'm told I can stop taking anti-biotics (one or both, I'd be find with either). Knew that flagyl could cause nerve pain and numbness in the extremities, but never understood just what that entailed till now. Plus, even if that wasn't a developing side effect I'm beyond ready to no longer have to get up in the middle of the night for that third dose.
> 
> Hi. I am taking my Vancomycin at 12 am ( midnight), 6am, 12pm ( noon) and 6pm. I just wait until 12am to go to bed. I have 6 alarms set on my cell phone ..... four for the Vancomycin and 2 for my Questran ( so I can space the Questran and Vancomycin 3 hours apart).
> I am staying home doing nothing.


----------



## Ann Morgan

UnXmas said:


> If you look for smoothed tinned soups, you can get a bit of variety of vegetables that way. And there are a few quite a few root vegetables besides the ones I mentioned above, e.g. parsnips and turnips. You might also be alright with butternut squash and aubergines. But they do have to be cooked until they're like mush.  Or at least they do at first until you can figure out your tolerance levels by gradually building them up. But vitamin pills are easier. Or supplements like Ensure.


I saw a Nutritionist last year. She gave me some recommendations, like cooking vegetables until they are mushy. I am afraid to try this because I don't want to experiment and then have diarrhea from the vegetables. The only vegetables I can really eat are root vegetables cooked, with no skin. But I never eat potatoes really. And the only fruit I can eat are bananas. 

My Nutritionist did give me some smoothie recipe (s) and I TRY to drink one each day. I can eat an apple in a smoothie because it is pilverized, but I cannot eat a raw apple just the way it is from the grocery store. My smoothies contain: one ripe banana, one apple without the skin and core, 1/2 cup fresh carrot juice, 1/2 cup plain Greek yogurt, 1 cup soy milk, 1 tablespoon honey and 1 tablespoon real vanilla. I have a Nutribullet blender. I have used Whey Powder for the protein source in my smoothies, but I prefer the plain Greek yogurt.

The only Vitamins I take are Vitamin B12 over-the-counter and Vitamin D3 over-the -counter. I JUST started taking Culturelle probiotics each day. I have been told to take the Vitamin B12 from my Primary Care Doctor. The Vitamin D3 from my Endocrinologist. And I mentioned the Probiotics to my new GI doctor and he gave me a list of the ones that he recommends. I always tell my doctors if I am taking supplements.

For Ensure Drink information ( the true story) go to www.fakefoodwatch.com. I used to be hooked on the Ensure, no wonder.....the first two ingredients are sugar and water. ( And Ensure is expensive. Better to eat real foods than this stuff ?  )

Later.


----------



## UnXmas

Ensure suits me, I need the sugar! Even my dentist told me to keep drinking it. And it contains all the vitamins and other nutrients you need, so it's healthy, especially for people can't eat many fruits and vegetables. I get mine on prescription (along with Calogen shots) so I don't have to pay anything for them at all, but I can see how that would be a problem for many. My only issues with Ensure are that the taste isn't that great, and all the fat and protein in them makes them much more filling than drinks based mainly just on sugar, which is a downside when you're trying to gain weight. But I suppose you have to compromise somewhere, as the more calories a food or drink has, the more filling it's going to be.


----------



## UnXmas

Ann, I clicked on the link you provided but I can't find the information about Ensure on the page it links to.

Edit: Don't worry, I searched the site and found these two articles: 

http://www.fakefoodwatch.com/2012/08/ensure-drink-sugary-fake-food-pseudo.html

http://www.fakefoodwatch.com/2014/02/fake-food-products-endorsed-by-doctors.html


----------



## UnXmas

The Ensures I have are not the same as those talked about in the article. The ones the NHS provides (as well as all the other supplements used in medical situations) are never sold or marketed as aids to help body builders put on muscle or for "picky children" as decribed in the article. 

I know there are many other supplements marketed for other purposes and never aimed at sick people, and which anyone can buy and which don't require anything from a doctor, but they're never used by doctors. I think you can buy Ensure here, but the kind I have says on each bottle that they can only be used under medical supervision.

Also:



> "Common adverse conditions include constipation, diarrhea, vomiting and nausea. These conditions are generally mild and typically abate once your body adjusts. Improper usage, on the other hand, can lead to more serious medical problems such as seizures, irregular heartbeat, changes in mood or mental status, weak pulse, muscle cramps, shortness of breath or difficulty breathing."


There is no way this is true of the Ensure I drink. For one thing, like many people here, my digestive system reacts to the slightest thing, but I've never had a single side effect from Ensure (besides fullness, but if you count that then you'd have to say that most foods and many drinks have that as a side effect), not even when I was having three Ensures and four Calogen Shots a day.



> A better, healthier solution than drinking an 8-oz bottle of Ensure?
> 
> Eat a banana, and take a daily, natural multi-vitamin. Skip the chemical-laced sugar water.


Where are the calories in that substitute?

Sorry for the rant. Don't take any of that personally, Ann. I've just had a *lot* of frustration in the past with people claiming various foods/supplements/drinks/medications/surgeries/etc. are bad when they're things I really really need, and telling me things are really really good when, for me at least, they're bad. Sugar is a food. It's not unhealthy in itself, it only becomes unhealthy for people who eat too much of it.


----------



## duh panda

Ann Morgan said:


> Hi. I am taking my Vancomycin at 12 am ( midnight), 6am, 12pm ( noon) and 6pm. I just wait until 12am to go to bed. I have 6 alarms set on my cell phone ..... four for the Vancomycin and 2 for my Questran ( so I can space the Questran and Vancomycin 3 hours apart).
> I am staying home doing nothing.


I also spend my days staying home and sleeping around dosing schedules. I don't think my sleep schedule would change much without meds in the picture because I prefer a split sleep schedule but... I don't like feeling ruled by it all! I'd like to think I don't do nothing at home all day... but sometimes it certainly feels that nothing is my accomplishment for the day between making sure meds are taken when needed, appointments are made and met, insurance companies and bills dealt with, and of course nutritional needs met.

If it were not for alarms, calendar reminders and a few good close people around me to help keep things in order everything would seem so scrambled. Not that it's any less scrambled... just a bit less chaotic when charted out a bit.

On a totally different note, from anything on here lately, shopping for clothes is enjoyable right now since it seems elastic stretchy waist bands, loose pants and flowy skirts/ dresses are in this season. Why is this notable? Generally, because I come from a family of women that hate shopping and for the first time ever it feels like there are options - good options to work with both my crohnsie body and budget.

 I now have pants. That fit. For the first time in 2 years. NO SAFETY-PINS IN THIS WAISTBAND. And I didn't have to choose them because they weren't the only option. They aren't jeans, aren't exercise clothes, and are light enough to wear in summer soooo I don't burn to a crisp! :dance: Never thought I'd be that girl where buying an item of clothing would be such a mood lifter.


----------



## buttER

duh panda said:


> Never thought I'd be that girl where buying an item of clothing would be such a mood lifter.


From someone who also hates clothes shopping - congratulations!!! I hope you bought more than one!


----------



## buttER

Well done those on time schedules for medicines. It must be exhausting. I hope you are able to go back to sleep straight away once the meds are down.


----------



## UnXmas

> From someone who also hates clothes shopping - congratulations!!! I hope you bought more than one!


I love clothes shopping, but it has two problems for me: 1. Actually going to shops is exhausting and miserable. I live in the middle of nowhere, and I'm just too ill with all sorts of different symptoms, I haven't been real shopping for ages. But I've solved this by learning to love online clothes shopping! Which has all sorts of advantages to real shopping. The only downside is you can't try things before you buy them, but as long as you get free returns, you can try them and send them back if you don't like them when you get the clothes on.

2. In very underweight and need clothes which aren't tight around my sore, bloated stomach, and which allow me to empty my stoma bag easily. The last isn't nearly as big a problem for me as it is for many others with ileostomies, as I usually only empty twice a day. On my top half, I usually fit into teenager clothes or a UK size 8 to 10 (which is loose on me, but it means nothing tight around my stomach). But I wear stretchy vests which cling without feling tight underneath whatever I'm wearing because otherwise I can't lean forward without revealing too much as my top hangs down. But on my lower half, my legs are too long for kids/teen clothes, and despite how underweight I am, my hip bones are simply too big to ever fit into a UK size 6. I'm actually a UK size 8 on my lower half, but wear a 10 because of not wanting anything tight.

My style to meet these requirements is a very short tunic-type top/dress over leggings. And a cardigan over it if cold. And child's knickers, age 12 - 13. The short length of the tunic means it's out the way if my stoma needs emptying, the leggings are comfy round my stomach (even as bloating increases through the day) and it can be smart or casual. The cardigan is easier to get on and off than a jumper, which is usefull as I'm always changing temperature, and I always have a beanie or headscarf on because meds caused my hair to fall out, so I don't have to redo my headscarf when my temperature changes and I strip a layer off.  

Oh, and I've heard in the media about how some women desperately want to fit into a UK size 8 or even 6 and believe they're fat because they can't. I can assure you that I'm very, very, dangerously underweight and I _still_ can't fit into a UK 6 on my lower half because my hip bones are simply too big, and no amount of fat loss/weight loss is going to change that. Women who are petite, like 5', and are skinny will fit into a UK 6, but women as tall as I am or taller simply won't. So no one should belive they're fat on the basis of not being able to fit into a 6 or even an 8 or 10 if they're average height or taller. (I'm 5'4").


----------



## brooklyn23

Today was Administrative Professional's Day so my office threw a lunch for us. I thought I was pretty good in terms of my portions, but in terms of just... the meal being what it was I'm not feeling very well. More pain. My supervisor said I look white.


----------



## duh panda

UnXmas, you just described pretty much my winter outfits! Since my mom retired she's been letting me raid her closet - which has a lot of soft sweaters and cardigans. Since chopping off my hair I've added scarfs/ thick head bands to my deep deep love of hats - hats are the one thing I will buy online without worry because there isn't so much worry about it fitting or not and I despise having to wait on returns when purchases don't work out. 

Yesterday I went in for Entyvio infusion and had a new nurse. As we were working our way through the general "wellness" questions she follows up after asking for weight/ height with "I was wondering if being that pale and thin was average for you or not because you have such a slim build." (That may sound totally bitchy written down but she was pretty sweet about it.) Nothing like feeling like skeletor yet having others think it could actually be "normal." 

Like you, I'm also really underweight, but very narrow through the shoulders/ hips, average height yet lanky so it is very difficult to find things that don't look terribly baggy through the legs, completely disappear my waist line, or are too short. I tend to fit a xs/ s both tops and bottoms (having given up on most number sizing unless I can try it on in store) but even most "form fitting" or "fitted" clothes are roomy and pants and long sleeve shirts usually fall short length wise by an inch or more. Ug, even just writing/ thinking about the clothing challenges makes me feel 10x more anxious. 

Biggest pet peeve from other women: "Oh how I wish I had your build and was a skinny as you!" I have yet to find a response that doesn't brush it off or come off as a bit rude to date. It really irks me how western culture has instilled such an emphasis on the concept of "thinness" according to numbers over something more universal such as approaching fashion/ beauty from a standpoint of well-being and body shape... since humans are shapes - physical things, not abstract numbers/ sizes.


----------



## Ann Morgan

I hate clothes shopping too ( I am "obese").  But when I DO go shopping I usually buy several things and it is so nice to have something new to wear for a change ( even if it is just a new pair of jammies : - )


----------



## Ann Morgan

UnXmas said:


> I love clothes shopping, but it has two problems for me: 1. Actually going to shops is exhausting and miserable. I live in the middle of nowhere, and I'm just too ill with all sorts of different symptoms, I haven't been real shopping for ages. But I've solved this by learning to love online clothes shopping! Which has all sorts of advantages to real shopping. The only downside is you can't try things before you buy them, but as long as you get free returns, you can try them and send them back if you don't like them when you get the clothes on.
> 
> 2. In very underweight and need clothes which aren't tight around my sore, bloated stomach, and which allow me to empty my stoma bag easily. The last isn't nearly as big a problem for me as it is for many others with ileostomies, as I usually only empty twice a day. On my top half, I usually fit into teenager clothes or a UK size 8 to 10 (which is loose on me, but it means nothing tight around my stomach). But I wear stretchy vests which cling without feling tight underneath whatever I'm wearing because otherwise I can't lean forward without revealing too much as my top hangs down. But on my lower half, my legs are too long for kids/teen clothes, and despite how underweight I am, my hip bones are simply too big to ever fit into a UK size 6. I'm actually a UK size 8 on my lower half, but wear a 10 because of not wanting anything tight.
> 
> My style to meet these requirements is a very short tunic-type top/skirt over leggings. And a cardigan over it if cold. And child's knickers, age 12 - 13. The short length of the tunic means it's out the way if my stoma needs emptying, the leggings are comfy round my stomach (even as bloating increases through the day) and it can be smart or casual. The cardigan is easier to get on and off than a jumper, which is usefull as I'm always changing temperature, and I always have a beanie or headscarf on because meds caused my hair to fall out, so I don't have to redo my headscarf when my temperature changes and I strip a layer off.
> 
> Oh, and I've heard in the media about how some women desperately want to fit into a UK size 8 or even 6 and believe they're fat because they can't. I can assure you that I'm very, very, dangerously underweight and I _still_ can't fit into a UK 6 on my lower half because my hip bones are simply too big, and no amount of fat loss/weight loss is going to change that. Women who are petite, like 5', and are skinny will fit into a UK 6, but women as tall as I am or taller simply won't. So no one should belive they're fat on the basis of not being able to fit into a 6 or even an 8 or 10 if they're average height or taller. (I'm 5'4").


Shopping makes me very tired too and trying on the clothes is uncomfortable because of my arthritis. I hate big stores. I have not been to a Mall in years.

I occassionally shop online too, which works out well once you learn about sizes and brands that fit you ( each store website seems to have their own size-chart). I have purchased athletic shoes and underwear online, but I knew the exact size and brand and style that fit me. No returns.

Sometimes I buy large women's elastic waist "jeans" at a store called Catherines.

I know that some folks may be low on cash and so I also recommend local, clean and organized" Thrift Stores".  My elderly mother would always find shirts there that looked brand new and clean.....she just had a talent for finding the good stuff. I am obese, so finding clothes at Thrift Stores is almost impossible.....BUT.....I lost 60 pounds in 2006. In 2007 I bought 2 pair of black stretchy pants at Goodwill. I gained back the weight but I still can wear those pants !  I have never purchased pants that I kept for 8 years that still fit me and still were not worn out. Long live polyester !:eek2:

PS: I have short, short hair on purpose. I cut it 3 years ago. Now I have sensitivity to sunlight heat on my skin.....so now I must find a hat or hats to wear so l don't fry the skin on my head.....I LIVE IN ARIZONA !


----------



## Ann Morgan

UnXmas said:


> The Ensures I have are not the same as those talked about in the article. The ones the NHS provides (as well as all the other supplements used in medical situations) are never sold or marketed as aids to help body builders put on muscle or for "picky children" as decribed in the article.
> 
> I know there are many other supplements marketed for other purposes and never aimed at sick people, and which anyone can buy and which don't require anything from a doctor, but they're never used by doctors. I think you can buy Ensure here, but the kind I have says on each bottle that they can only be used under medical supervision.
> 
> Also:
> 
> 
> 
> There is no way this is true of the Ensure I drink. For one thing, like many people here, my digestive system reacts to the slightest thing, but I've never had a single side effect from Ensure (besides fullness, but if you count that then you'd have to say that most foods and many drinks have that as a side effect), not even when I was having three Ensures and four Calogen Shots a day.
> 
> 
> 
> Where are the calories in that substitute?
> 
> Sorry for the rant. Don't take any of that personally, Ann. I've just had a *lot* of frustration in the past with people claiming various foods/supplements/drinks/medications/surgeries/etc. are bad when they're things I really really need, and telling me things are really really good when, for me at least, they're bad. Sugar is a food. It's not unhealthy in itself, it only becomes unhealthy for people who eat too much of it.


I don't take it personally at all.

My elderly mother got quite thin and they wanted her to drink the Ensure but she did not like the taste or texture. She really needed the calories too. ( She passed away in 2013).  

Anyhow, when I was "hooked" on the Ensure I was already obese !  I drank 3 a day ( I needed them, I craved them ). That was 750 calories a day just for the 3 Ensures each day. And they are expensive here, I would guess I was spending about $5.00 per day on the 3 Ensures ! That was $150.00 per month....WOW.:duh:

Have a good week.


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## duh panda

Ann Morgan said:


> PS: I have short, short hair on purpose. I cut it 3 years ago. Now I have sensitivity to sunlight heat on my skin.....so now I must find a hat or hats to wear so l don't fry the skin on my head.....I LIVE IN ARIZONA !


I love the variety of hats on forever21 (and the prices :thumright


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## UnXmas

> Biggest pet peeve from other women: "Oh how I wish I had your build and was a skinny as you!" I have yet to find a response that doesn't brush it off or come off as a bit rude to date. It really irks me how western culture has instilled such an emphasis on the concept of "thinness" according to numbers over something more universal such as approaching fashion/ beauty from a standpoint of well-being and body shape... since humans are shapes - physical things, not abstract numbers/ sizes.


I'm so skinny I've moved way past the point where anyone envies it or could ever consider it as normal in any way. There is definitely a point where people recognise thinness numbers as too low and prefer wellness.


----------



## kikig

Feeling very frustrated after arguing with my health insurance.
Idiots.

And they have no understanding of why I get upset that they offer homeopathy but when it comes to preventative things like nutritional support, they tell me there is no basis to fund my protein drinks as they are regarded as grocery items???

Getting daily IV protein infusions and possibly a long stay in hospital is cheaper than paying for lousy protein powder???


----------



## duh panda

UnXmas said:


> I'm so skinny I've moved way past the point where anyone envies it or could ever consider it as normal in any way. There is definitely a point where people recognise thinness numbers as too low and prefer wellness.


I think the prednisone cheeks tend to create an illusion of wellness where there is none in the eyes of those who haven't known me pre-crohn's or simply don't know me. 

Since this is the "how are you feeling today" thread it's a mixed bag. I am grateful to currently be sitting on a comfy couch at the coast enjoying time with family. 

It could be easy to dwell on how the brief walk down to the beach left me dizzy and seeing spots needing to rest every hundred feet or so at an elevation far less then I'm accustomed, the constant nausea and numbness that makes me think there's something off with current meds. but frankly a part of me feels ashamed for all I've been able to enjoy the past year and the love within the relationships in my life that gives me an opportunity to live and thrive regardless of circumstance.

It is easy to forget the wracking pain the moment it subsides and move through it. It is not as easy to get past feelings of guilt for the privileges I do have: the freedom from pressure in finding a job or developing a career through the corporate ladder, for the unconditional care I receive, the government support which has left me more financially stable and medically covered then I could achieve on my own, and so much more. I am not grateful I have Crohn's, but ashamed that having Crohn's is what has given me the courage to try to find unconventional means of building a life and achieving my dreams.


----------



## Ann Morgan

How am I feeling today ?   Okay, is this too personal..........
I have been on the Vancomycin for 9 days now. The past two days I have had a lot of air in my gastrointestinal tract and I am having terrible smelling gas !  Thank God I am at home !  And the BM smells terrible too. And the last two days the BM is floating in the toilet, not normal for me. I have to take the Vancomycin for 14 days. I have five more days to take it !  Then I follow up with the GI on April 30th. I don't think I have ever had gas smell so nasty. Tomorrow I have to go pick up two prescriptions........I had better go to the drive-thru pharmacy window as I would hate to pass this nasty smelling gas in public. Yikes. I hope this two week Vancomycin gets rid of my c-diff. I am just getting bored at home. And I hate the medicine schedule. I have to take the Vancomycin every 6 hours, on the dot. So it is 12am, 6am, 12pm and 6pm. I don't go to bed until midnight and my sleep schedule is so messed up and I am more tired than ever.
Have a good weekend.


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## duh panda

Ann Morgan,

I had a nurse when I was initially hospitalized/ diagnosed that was truly an angel - the powers of peppermint essential oils dabbed on some cotton balls and left in a discreet corner can really help when the smells that can arise become unbearable. Rather then just about every other air freshener option etc. instead of masking, it cuts straight through and really helps everything dissipate faster.


----------



## UnXmas

Ann - I was also going to suggest air fresheners! I have a stoma, and emptying a stoma bag typically smells worse/more than having a normal bowel movement, so air fresheners come with the territory. I always take a spray air freshener into hospital with me. But smells in hospitals are so common that other women on the ward kept borrowing mine! Don't worry, anyone with bowel problems faces this problem, so it's not too personal to talk about here.

Recently I got a room re-deodouriser. It gets rid of bad smells (_de_odourises instead of masking them) and replaces it with a nicer scent (_re_odours).


----------



## UnXmas

> I think the prednisone cheeks tend to create an illusion of wellness where there is none in the eyes of those who haven't known me pre-crohn's or simply don't know me.


I had that with pred too - people even commented that I looked better. The same has happened when I've had NG feeding - it caused massive water retention so I got compliments on how well I was looking because my face puffed up. My ankles puffed up too, though no one commented on those!


----------



## UnXmas

I am looking forward to getting my codeine prescription tomorrow. It makes me anxious not having it.


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## duh panda

Today I was feeling pretty good, not even nauseous... until I had some cereal with milk. Not even 1/3 C. and within 20 mins. and started to feel extra crummy. My sister had a cheesecake for her birthday dessert choice 3 nights back and I vomited that night. Following night was ok, but still queasy after ice cream. Next day (since I'm on a family vacation) went out for dinner and options were creamy foods or fried foods - I went the way of the creamy and 1/2 cup of Alfredo left me vomiting, again. Been wondering if it's been dairy or meds. that have been causing such upper GI troubles but this trip is enough of a push for me to desire eliminating lactose immediately to see what happens (as cheese seems to not have any affect). Tomorrow will be day 1, lets see how it goes!


----------



## ronroush7

Getting hit tonight from the contrast for my MRI. I wish we had more than one bathroom.

 2


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## UnXmas

Today I'm really bored.


----------



## n00b

Today my OCD has kicked in with intrusive thoughts...grrr.  Stupid brain!!!

Just laugh it off and carry on, only thoughts remember..only thoughts


----------



## copeland

Today my butt hurts. :shifty-t:


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## Lisa

Blech.  Have felt like I'm prepping for a scope all day today, not hungry, need to change my drawers when I get home....have an hour drive ahead of me to get home.


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## Ann Morgan

duh panda said:


> Today I was feeling pretty good, not even nauseous... until I had some cereal with milk. Not even 1/3 C. and within 20 mins. and started to feel extra crummy. My sister had a cheesecake for her birthday dessert choice 3 nights back and I vomited that night. Following night was ok, but still queasy after ice cream. Next day (since I'm on a family vacation) went out for dinner and options were creamy foods or fried foods - I went the way of the creamy and 1/2 cup of Alfredo left me vomiting, again. Been wondering if it's been dairy or meds. that have been causing such upper GI troubles but this trip is enough of a push for me to desire eliminating lactose immediately to see what happens (as cheese seems to not have any affect). Tomorrow will be day 1, lets see how it goes!


I was out of town over Labor Day and Christmas last year.  It was quite a challenge as far as food choices too. Over Labor Day Weekend I ate airport food and had terrible diarrhea at airport and in the plane. 

At Christmas time visiting my relatives I ate something at an Italian restaurant that made me sick. The next morning in my hotel room I had terrible diarrhea ( an accident on my pajama pants). I had to hand wash the pajamas. Then send pajamas to be cleaned. Take a good shower. And then I felt so sick that I had to spend the entire day in my hotel room, missing out on time I could have spent with my great-nieces. Fun memories to have for the holidays ?:stinks:


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## Ann Morgan

Today I feel old and stupid. I had to look up on my cell phone dictionary to see what "thread" meant ( the "urban" dictionary. ) Now I suppose I have to look up "message board" too !  Okay, so I know what "icons" are. I even know what "IG" means now. Don't ask me about " hashtags".  I have had a lap-top computer for 5 years now and just bought a newer one 6 months ago. I also bought a fancy cell phone 6 months ago. I have not used my DVD ( or is that DVR) player for a long, long time. Gosh, if I push a wrong button on my remote control I may be in big trouble. Even my vehicle is simple, bought it 13 years ago with NO "bells and whistles". I still have to roll the windows up and down the old fashioned way ( nothing electric)  Hey, but I CAN use a coffee pot, toaster oven, microwave and my paper shredder !!!!  : - 0.  : - )

Oh, as far as my Ulcerative Colitis today it has been pretty good. I only had one BM so far today and it is 5pm. Wow.  : - )


----------



## brooklyn23

I'm overall doing much better but a little bit on the crampy side today. I've had like 4 mini poops. :/ Don't like mini poop days.


----------



## emmaaaargh

I'm doing okay today, but I seem really mentally exhausted for no reason.

It's probably just stress. I've got a Biology practical exam and a German oral exam on Friday and it's two weeks until my first exam of the proper exam season. To be honest, I feel a little defeated. I feel like I've done the bare minimum this year and used my illness as an excuse, even though I know that's ridiculous. It's probably because I've found it really difficult to cope with the work this year for some reason. The brain fog is immense, and I just really really cannot find the motivation anymore.

But it's only a while, I guess, and then I'll be sorted. I just have to get through the next month and a half!


----------



## brooklyn23

I take back the pretty much okay, and amend to "I'm in pain, and bleeding which is kind of new." Lots of bright red blood in the toilet.


----------



## ronroush7

Not good.

 2


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## Lisa

Nope, not good!


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## duh panda

Bleh. So freaking tired today. Systemic yeast infections suck and my dr. is out of office till next week. 

On the plus side, the taste/ texture of Ensure Plus is much improved from what I remember, had another MRI at a new location - I was a bit apprehensive since I liked the techs at the other hospital, but the tech's were just as cute, more personable, and while it was the first time I've ever puked trying to get and keep the barium down they served it cold, gave me plenty of warm blankets, and I got juice and cookies after - a first.


----------



## Lisa

Lisa said:


> Blech.  Have felt like I'm prepping for a scope all day today, not hungry, need to change my drawers when I get home....have an hour drive ahead of me to get home.



Now sporting a 101+ temp, waiting for Tylenol to kick in.....


----------



## UnXmas

Just back from hospital, had an X-ray. Very easy as tests go, only had to wait ten minutes, then X-ray took ten minutes. One week to wait for the results to be sent to my doctor. (Does anyone else suspect that the people doing the tests know exactly what the results are already when they say to you afterwards "the results will be sent to your doctor for interpretation"?)


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## brooklyn23

Okay, well I went to the doctor this morning and it is just a hemmie. On the other side though there was still occult bleeding which makes me feel more vindicated than anything else. Because I still have pain spots in my abdomen and it makes me feel like I'm not crazy.


----------



## duh panda

Today, I woke up grumpy. I was determined to be grumpy all day. Something about taking an hour just to choke down and keep down a simple lunch of noodles, butter and cantaloupe while feeling so exhausted I couldn't even eat at the table or prepare the food myself just sets me off on the wrong foot. 

But I have awesome people in my life and it makes it hard to stay grumpy for too long. My S.O. sent me a synopsis of how he would soften me up if he weren't 1000 miles away which served as a good thought and certainly put a much needed smile on my face. I got a call from my Dr's nurse who's been in constant contact with her despite it being her vacation week. Do doctors ever really get a vacation??? Yesterday's MRI came back showing no changes so I get to drop the antibiotics! And we'll work on getting thrush/ yeast eradicated and back under control - and I thought I would have to wait at least until Monday to have any game plan in order. I am so excited to be able to sleep a solid night tonight. It's not ideal news, but seeing as how the past 2 years have been no change is a wonderful start. Shoot, with how this day's looking up maybe I'll take a more luxurious shower instead of my quick more energy efficient route and invest some time in myself to feel pretty - just because.


----------



## Cat-a-Tonic

UnXmas said:


> (Does anyone else suspect that the people doing the tests know exactly what the results are already when they say to you afterwards "the results will be sent to your doctor for interpretation"?)


Yes, they do know.  I am friends with a couple of radiology techs, and they absolutely know their stuff.  They're not allowed to tell you if they see anything as they're not doctors, but yes, they know your results immediately.  I've heard all sorts of interesting stories from them particularly when they were in school and learning things about radiology - they told me all about the pill cam when I was going to have mine done a few years ago (apparently, oftentimes the final images on pill cam results are of the patient's face looking down into the toilet to see if they passed the capsule!).  But yeah, I'm pretty sure it's just a legal or liability thing - they aren't doctors so they can't practice medicine, they can't say what your results are even if they're 100% sure.  They have to be so careful about lawsuits and things like that.


----------



## UnXmas

Cat - that thing about the pill cam images of people's faces is somehow very disturbing! 

I have had a couple of occasions when the techs told me the results right away - I've had a few images taken to check the position of an NG tube and they always told me it was fine. I'm not sure if they'd have told me if it wasn't fine, but they might have since that would still not have been a big deal, it would just mean I'd have to have the tube reinserted. I also had an upper endoscopy where I was getting a running commentary about the inflamation he was finding as he was doing the scope, though maybe it's different as scopes are done by doctors?

It would have been nice to have been given the results of the gastric emptying study I had months ago right away, since the results appear to have been lost before they made it back to my doctor. Anyway, I know nothing of today's test. Hopefully at some point someone will let me know the results of this one.


----------



## Cat-a-Tonic

I know, it disturbed me too when I first heard about it!  And I think I'm actually one of those people (it's more funny than disturbing to me now).  When I had my pill cam, I didn't see it come out the other end in spite of poking at my poo for a few days afterwards.  Then shortly after that I was going to have an MRI and of course you can't have any metal in the MRI machine, and I was concerned that there was a possibility that I still had the pill cam floating around inside me somewhere and I'm guessing there's metal in the capsule.  So I called my GI's nurse, and she looked into it - then, without elaborating, she told me that the pill cam "definitely" made it all the way through me - there was no doubt.  She didn't specify, but I'm thinking that "definitely" might mean they saw my face looking into the toilet at the end of my pill cam.  Eek!    What a ridiculous, horrifying thought, that such a picture of me exists.  (Hopefully they just saw the pill cam exit my body without seeing my face looking for it.)

Maybe it's different in the UK - I think it's a legal thing here in the US because I've never had a tech tell me my results (and I have asked multiple times).  I'm actually waiting on results myself right now - I had a liver ultrasound on Monday to check on some benign tumor things I have on my liver, and the ultrasound tech also wouldn't tell me anything.  She only would say that the results take about a week (and I was thinking, no they don't, you know them already!).


----------



## duh panda

UnXmas said:


> (Does anyone else suspect that the people doing the tests know exactly what the results are already when they say to you afterwards "the results will be sent to your doctor for interpretation"?)


Along these lines I've had techs who've done my imaging a couple times and recognize/ know why I'm there show me the images directly after MRI's and point out where the small bowel/ large bowel is etc. when I've asked if I could see them. I think they know pretty well what they might be looking at but for legal purposes can't give any specifics or direction to the patient.

Since lately we've just been tracking things via imaging I already have a general idea of how things look from previous scans and have gotten a bit bold in asking to review/ see the scans once they're done. Generally, allows me to walk out with an idea of whether or not things are screwy or haven't changed/ changed very little. Some refuse this, some have allowed it, some seem hesitant but figure eh why not. However, they are very very careful to avoid actually saying anything specific regarding what shows up in my gut regarding fistula/ stricturing and a mass that's been hanging around for a while now. 

Had one tech ask for more specifics/ showed a bit of curiosity regarding my presentation of crohn's since he has a friend - also in their 20's - who's had crohn's since their teens and I think he was probably comparing what info I was providing to what he was seeing on the screen and his understanding/ experience of crohn's via his friend which was pretty cool.


----------



## Lisa

Still sick, couldn't enjoy the gorgeous day we had today except to sit on the deck in a new deck chair and get sun burned lol...

Temperature is going back up......100.5.....sigh


----------



## duh panda

Lisa said:


> couldn't enjoy the gorgeous day we had today except to sit on the deck in a new deck chair and get sun burned lol...


Sometimes that is the best way to enjoy a gorgeous day - feeling well or not! Minus the sunburn... Gotta wear that sunscreen and protect that skin - even more so when unwell! Big floppy hats I tell you - big floppy hats are where it's at.

Hope that fever breaks for you soon and you'll be able to enjoy the many more gorgeous days to come in a more active way.


----------



## 1sickpuppy

Today I'm throwing myself a small pity party because I can't just suck it up and force myself to (insert normal everyday activity here). I'm used to being able to mind-over-matter things and force myself to work through the fatigue/soreness/what have you. That doesn't work with $@&! UC. I know it shouldn't make me feel like a failure, but it does.

(They have these commercials on TV here for ice cream cakes, with people celebrating random non-events just so they can have a cake...singing "Happy algebra homework to you..." Etc. now I'm picturing someone bringing me an ice cream cake while singing "happy pity party to you..." LOL thank God I still have a sense of humor)


----------



## UnXmas

Cat-a-Tonic said:


> I know, it disturbed me too when I first heard about it!  And I think I'm actually one of those people (it's more funny than disturbing to me now).  When I had my pill cam, I didn't see it come out the other end in spite of poking at my poo for a few days afterwards.  Then shortly after that I was going to have an MRI and of course you can't have any metal in the MRI machine, and I was concerned that there was a possibility that I still had the pill cam floating around inside me somewhere and I'm guessing there's metal in the capsule.  So I called my GI's nurse, and she looked into it - then, without elaborating, she told me that the pill cam "definitely" made it all the way through me - there was no doubt.  She didn't specify, but I'm thinking that "definitely" might mean they saw my face looking into the toilet at the end of my pill cam.  Eek!    What a ridiculous, horrifying thought, that such a picture of me exists.  (Hopefully they just saw the pill cam exit my body without seeing my face looking for it.)
> 
> Maybe it's different in the UK - I think it's a legal thing here in the US because I've never had a tech tell me my results (and I have asked multiple times).  I'm actually waiting on results myself right now - I had a liver ultrasound on Monday to check on some benign tumor things I have on my liver, and the ultrasound tech also wouldn't tell me anything.  She only would say that the results take about a week (and I was thinking, no they don't, you know them already!).


I was going to say I'm glad I turned down my doctors' suggestion that I have a pill cam, though thinking about it I would probably have avoided face images, since with a stoma it's much easier to see what's come out. Though they would have got images from when the camera would have been inside my stoma bag.  I don't think we should spend too long thinking about these things, it's just too weird! Pill cam selfies?

Good luck with your ultrasound results.


----------



## Cat-a-Tonic

Pill cam selfies, yikes!  Well, at least those are selfies in which it's pretty much guaranteed that nobody will be doing duck-lips at the camera.    Ha ha.  I know my pill cam got images of my face just before I swallowed the capsule - I remember that the nurse turned it on and turned on a monitor to make sure that it was working, and I could see myself on the monitor, being recorded by the pill cam.  Eek, so the pictures of me swallowing the pill cam might be a bit scary too!    First-person perspective of what it's like to be eaten, hah.


----------



## buttER

I want a pillcam selfie!!!! Surely that has to be the best reason to ask a doctor for a pillcam?

I am now looking for a private gastroenterologist in the UK or Germany to take on my case after my doctor here in th NL shrugged his shoulders and said he can't run any tests because it is against protocol and he would get a black mark against his name. Even though he can see why they would be useful.

So I am feeling a bit miserable and I also think I am premenopausal because my hormones seem to be all over the place, I don't trust the way I feel or think at the moment.

On the up side, my guts seem to have been OK since Thursday. Woohoo. I hope they stay like that because this week I will be flying to Ireland for a workshop. I gave up work 3 years ago because I was too ill (even to do home office lying in bed) and now maybe maybe the possibility of going back to work is in sight. I just have to figure out how to crack the fatigue.

Good night everyone, or have a good day if yours has just started.


----------



## UnXmas

I'm not quite sure what help you will get here in the UK, King Of Orange. I love our health care system because it's free (but that won't apply if you're going private? Are you planning to go through any tests you have done here too or just a consultation?) but it's not exactly great in many other ways. Pm me if you know what part of the UK you may go to and would like gastroenterologist recommendations.... actually I can give you the names of many gastros. to avoid.


----------



## UnXmas

Today I have been awake since 5am because my stoma bag was leaking. I somehow managed to wake up before the leak got to the edge of the bag so no mess but after getting up to change it I have not been able to get back to sleep again, and it's almost 7am now so I might just give up and get up. I might use the time to have an extra breakfast since I'm supposed to be gaining weight. My dog's just woken up so she probably won't allow me to stay in bed much longer anyway, she wants _her_ breakfast.


----------



## UnXmas

Had a nap. Feel better now.


----------



## Lisa

Felt better over the weekend, actually ate dinner yesterday and now paying for it.  Back to the really watery d, feel sweaty, like a cold sweat as I don't have a temperature.....thankfully no cramps but there is definitely something not right.  Staying home again today as I don't want any accidents at work, hoping the doctors office calls me today with test results.


----------



## copeland

Today, my butt hurts and my fistula is leaking some sort of pus/stool/blood mixture.  Couldn't tell anyone else, so I'm putting it here.


----------



## UnXmas

My stomach is really upset today.  Still appreciate how much easier it is to manage with a stoma. I get to choose when I'll get up and go to the bathroom.


----------



## duh panda

Finally getting infections/ overgrowth stuff under control and have been ravenous the last few days. Like - eating two breakfast and two dinners and still waking up in the middle of the night with a demanding stomach. Bit of a trade off since now that I'm managing to keep down solid food again my abdomen is noticeably more sore and achy and the night sweats are ridiculous but frankly I'm just relieved to be managing food so I don't end up with a hospitalization like my dr. has been threatening.


----------



## neohic

Hi everyone... been a long time since I posted anything, but I've been feeling pretty good for a while. Couple mishaps since having my gallbladder out at the end of last year, but that's mostly just from having to relearn some dos and don'ts again. Still frustrated with so many things, but overall doing well.


----------



## UnXmas

My stomach is upset again. I've no idea why now.


----------



## Ann Morgan

I am having watery diarrhea, cramping, gas, smelly poop, indigestion, air, bloating. Tummy and colon are not happy.  I will go back to taking my Questran twice a day instead of once a day. I will keep track of my bowel and tummy troubles for 2 weeks. If Questran does not help and I still have this kind of diarrhea, I will return to my Gastroenterologist. Normally, in the past, taking the 2 Questran a day has really helped me. 

I just finished 2 weeks of Vancomycin on April 29th. My doctor seemed satisfied with my Vancomycin treatment ( based on what we talked about during my office visit). I was NOT re-tested for the C-diff after my 2 weeks on the Vancomycin. 

I am not happy at all with my current symptoms. The other day I had an extremely uncomfortable acid reflux attack. Acid all the way up my throat, but not inside my mouth. My throat was sore afterwards. I have not had an attack like that in YEARS. My UC symptoms are worse right now....and my stomach too.

I stayed home for a month in April because of the C-diff ( I am disabled, so I don't work). I wanted to go back to what I was doing before my C-diff diagnosis and treatment, but I can't. I feel too crummy. I am really pissed off.

I can't stay alone in my apartment all of the time. Isolation is bad for me because of my Major Depressive Disorder. One of my nice neighbors knocked on my front door today to say "Hi" and we talked outside for 45 minutes. I was just dying to talk to someone !  When I stay in my apartment too much then my bad neighbors activities and behaviors really get on my nerves ( I live in a huge apartment complex in a bad neighborhood).

Thanks for listening.. : - 0


----------



## FrozenGirl

Remicade day which makes me happy. Methotrexate tomorrow and hopefully another 5mg Pred taper. Here's hoping Remi and Methotrexate will be the thing for me. On the down side it is crazy snowing and I am freezing.


----------



## duh panda

Today I've just felt wiped. Decided to spoil myself and had an appointment to get some color added into my hair. Being in and out of bathroom all morning left me pretty unenthusiastic and wanting a nap by noon instead of going into town. Fell asleep on the car ride into town since my mom drives me, so got my nap and went through with the appointment... win win! not really a bad day, just so so tired and can't wait for things to settle down some both in my gut and life... feel like I think that a lot! But there will be calmer days, always is, I just don't feel like being patient. So hard to be patient when my butt hurts, I'm tired but have deadlined responsibilities to meet and I've ran out of my beloved aloe wipes.


----------



## Ann Morgan

FrozenGirl said:


> Remicade day which makes me happy. Methotrexate tomorrow and hopefully another 5mg Pred taper. Here's hoping Remi and Methotrexate will be the thing for me. On the down side it is crazy snowing and I am freezing.


I am only taking Lialda pills each day and Questran each day for my UC symptoms.  Does taking all those medications , at the same time , make you feel weird or sick ?   I was just wondering. My sister was offered infusion drugs for her RA, but she was not ready to go that route yet. My Rheumatologist even mentioned Remicade briefly to me a few years back. I don't even know if my Health Insurance Company would cover infusions ?  Anyhow, I was just wondering if all those medications are strong medications and what the side effects are ?  I think my sister takes methotrexate ?  anda-wave-t:

Oh, I just realized that there is probably another thread about medications ?  I will look at the list. : - )


----------



## Ann Morgan

Me again. I did not know which group to go to for my question.
Does anyone take metamucil ?  I am supposed to be on a high fiber diet.
I bought a huge container of metamucil last year ( i have no idea at the time why i bought the biggest container they sell ! ).
Do people take metamucil if they are having diarrhea or if they are constipated ?  My issue is diarrhea. 
Thanks.


----------



## duh panda

My understanding is that fiber gets things moving which is why a blah low fiber diet is the suggested diet during flares consisting of high number of bms or poor formation to slow things down and up the odds of improved nutrient/ calorie absorption. In addition there are 2 types of fiber (I can never keep which is what) but high fiber especially in 1 of the types can be irritating if there's a lot of inflammation, narrowing of the digestive track (may increase odds of blockage), or ulceration. Do you work with a nutritionist?


----------



## Ann Morgan

Hey, I did see a Nutritionist once last year ( I had to pay cash and it was expensive ). We talked for an hour and she wrote up some recommendations for me. I will have to find that paper that she gave me. Recently I went to visit my previous Gastroenterologist and he wrote up a paper for me regarding our office visit and his recommendation was for me to be on a high fiber diet. ( And lose weight and exercise .....yikes ).  Do you know the formula for how much water you are supposed to drink  each day ?  Take your weight and divide that number in half. This is the number of ounces of water that you should drink each day. I weigh a hefty 190 pounds right now. That means I should be drinking 95ounces of water a day, according to the Nutritionist.          Thanks for your input !


----------



## duh panda

No problem  I must admit I've given up thinking there's an "ideal" formula when it comes to diet and hydration lol although it can often serve as a good General guideline or checkpoint of sorts to work off of and try to find what works best as an individual. A bit random and maybe better suited on another thread but exercising with crohns/ illness is extra tricky. Read a study 're muscle fatigue measured during/ after exercise in flaring, remission, and non-crohns individuals. Those with crohns regardless of disease status' muscles fatigued at an earlier point so it's easier to overdo it and see negative instead of positive impact from exercise. It's a fine line that must be walked in so many ways!


----------



## FrozenGirl

Ann Morgan said:


> I am only taking Lialda pills each day and Questran each day for my UC symptoms.  Does taking all those medications , at the same time , make you feel weird or sick ?   I was just wondering. My sister was offered infusion drugs for her RA, but she was not ready to go that route yet. My Rheumatologist even mentioned Remicade briefly to me a few years back. I don't even know if my Health Insurance Company would cover infusions ?  Anyhow, I was just wondering if all those medications are strong medications and what the side effects are ?  I think my sister takes methotrexate ?  anda-wave-t:
> 
> Oh, I just realized that there is probably another thread about medications ?  I will look at the list. : - )


Nope. Lialda (Mezavant in Canada) doesn't control my symptoms so I just kept adding meds. They are stronger drugs for sure. My side effects from Remicade are minimal, fatigue mostly. Methotrexate its early to tell yet but so far it makes me dizzy the day after. Insurance companies usually make you go through 'step up therapy' where you have to fail so many drugs after trying them for X amount of time before they will cover expensive biologics. Feel free to PM me if you have any more questions. :ysmile:


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## Ann Morgan

Frozen: Yeah, my sister had to go through that "step up therapy" for her RA medication (s). She doesn't talk much about all her health issues......and I talk TOO much !  : - )


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## UnXmas

Ann Morgan said:


> Me again. I did not know which group to go to for my question.
> Does anyone take metamucil ?  I am supposed to be on a high fiber diet.
> I bought a huge container of metamucil last year ( i have no idea at the time why i bought the biggest container they sell ! ).
> Do people take metamucil if they are having diarrhea or if they are constipated ?  My issue is diarrhea.
> Thanks.


You might want to repost this in the Diet forum. Metamucil would be taken primarily for constipation, as it's a bulk-forming laxative: http://en.m.wikipedia.org/wiki/Laxative

I think this kind of laxative can also be taken for diarrhoea in certain cases.



> My understanding is that fiber gets things moving which is why a blah low fiber diet is the suggested diet during flares consisting of high number of bms or poor formation to slow things down and up the odds of improved nutrient/ calorie absorption. In addition there are 2 types of fiber (I can never keep which is what) but high fiber especially in 1 of the types can be irritating if there's a lot of inflammation, narrowing of the digestive track (may increase odds of blockage), or ulceration.


The two types of fibre are soluble and insoluble. Insoluble tends to be the most problematic.


----------



## brooklyn23

I feel... amazing. After losing 1/4 of the year of potential training, I still completed the Spartan Sprint, approximately the same time as last year and failing fewer obstacles.


----------



## Cat-a-Tonic

Metamucil is primarily psyllium husks.  I take 100% psyllium husks (Metamucil contains additives which can cause cramping, so look for 100% psyllium without additives).  I take one teaspoon a day and that's been very good for me.  And I don't tend to have constipation, but psyllium helps firm up my stools and make me more "regular".  I had started taking it a few years ago as I was in remission but still going 4-10 times per day.  Psyllium got me down to 2-4 times a day instead.

If you try it, start slowly with a small amount per day.  My psyllium package says to take 2 tablespoons a day - that amount would put me in pain!  Start with maybe half a teaspoon or one teaspoon and see how you do.  Mix it in a big glass of water, and let it sit for a bit to soak up the water before you drink it.  You may have some mild cramping the first week or two, but after that things should calm down.  Good luck, I hope it helps!


----------



## duh panda

Can today be over already? Feeling so very... crohnsie - and tired of looking at the bathroom walls. Frequency has doubled in the past week waking me up throughout the night with an unnerving increase in mucus. Night sweats are driving me crazy and skin is so sensitive seems like I should have a fever - grateful there isn't one. Doesn't seem to matter what I eat; even the most gentle foods/ liquids haven't been able to slow things down. 
Not looking forward to the joys of a 1000 mile car trip this upcoming week to wrap up medical care and finish moving belongings and establishing care in a new state. I'm hoping my GI dr. doesn't want to admit me for observation and tests for a couple days before we continue on our way. She's been threatening for a while, but I have a feeling she's going to be displeased letting me go in such a poor physical state and without any answers.
A bit... ok a lot anxious about switching care over to a new medical team and not having my mom close by anymore but... this hasn't been improving, just gradually backsliding, for 2 years so might as well do it now.


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## UnXmas

Woke up at six am. Got up at seven am. Feeling awful. Fell asleep on the sofa a bit before ten am. Just woke up. Feeling better. I always feel a _lot_ better after I have a nap!


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## UnXmas

I'm feeling awful because the doctor messed up with my prescription of stoma supplies, and I took it out on the receptionist. I was worried I'd run out of bags before new ones arrived (which would be a *massive* problem) I rang the GP surgery to ask about it and I waited twenty minutes on hold. I got through, explained the problem, and receptionist said she'd have to put me through to someone else. And I said, "how long will they keep me on hold for? Because I just spent twenty minutes waiting to speak to you." I didn't yell or anything, but my tone was annoyed and not polite. I feel guilty now. I always make sure that I don't "shoot the messenger" - e.g. if a doctor does something wrong, I'm still polite when speaking to his secretary. Or in this case, I should not have been cross with the receptionist, because she didn't cause them to forget my prescription, and it's not her fault they're so under-staffed that it takes twenty minutes to get through.

The GP practice is small so all the staff know me. I often meet this receptionist other places - she lives very close to me. Do you think I should go and appologise to her? Or wait until I happen to run into her?


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## Ann Morgan

Bloated this evening.

Also, not looking forward to my Endocrinologist appointment in June. I have hypothyroidism and nodules on my thyroid that are growing. This doctor also takes care of my bones, I have osteoporosis in my lumbar spine. I have not lost the weight she wanted me to lose, instead I have gained weight. And I have not been taking my Fosamax for my bones, so I guess I will have to be honest with her and tell her about that. Ahhhhhhh ! I have been seeing this doctor for several years.

I also have an appointment with my Urologist in June. I have a renal cyst on my right kidney. He is monitoring the cyst with Ultrasounds, CT Scan and MRI. I had a cyst taken off of my left kidney in 2007 and it was major surgery. I told this new doctor I DO NOT want surgery unless it is absolutely neccessary. I have been seeing this doctor since 2014.

Too much doctor stuff to worry about. 

I  was diagnosed with C-diff in April.  My new Gastroenterologist says he is satisfied with my recent  14 day Vancomycin antibiotic treatment and said that I do not have to be re-tested.....Say What? I just started seeing this doctor in 2015.

At least my new Gynecologist had good news this year. My pap smear was okay and my mammogram was normal.  I have been seeing this doctor since 2015.

Thanks for listening
Gotta go take my Questran now.


----------



## duh panda

So nervous/ anxious for tomorrow's doc appointment. Gut has been so unpredictable and just... off even my normal abnormal. Heard from my gi doc. today that she's concerned about me traveling/ finishing the move 1000 miles in my current condition but it's ultimately up to me.  I have a doc. Appointment with a gp. Who has connections to my top pick GI office in the area the first afternoon we get in so things are as lined up as they can be until I get the local referrals Medicaid requires. Gonna move forward with it regardless... we've been waffling too long and I can't validate keeping everything on hold now that the necessities for advocating and seeking the care I require has fallen into place/ motion. Nothing new and I'm kinda dumping it here since everyone around me seems to be just as if not more terrified by the situation; uneasy yet they also see the logical side that makes the call so difficult. People including my older brother and this is a guy who doesn't communicate/ express feelings or concern directly except on very very rare or extreme occasion. Glad I've got this community and hopefully once things settle and I'm no longer in a spot of Limbo will have some exciting or at least new subject matter to hit on! I am looking forward to new opinions and continuing to work toward improved disease management just gotta remember new docs might require a bit more open/ blunt communication since my current doc. , team and I have been together long enough where our thoughts tend to function on the same wavelength.


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## duh panda

Got an adjusted game plan today that has settled the nerves some and will involve one more stint with current doc. Offering more of an overlap/ transfer of care to the new than dropping and picking up with the chance of a new doc. Taking things in another direction completely or being stubborn with a hero "fix" it complex. I feel so good about this, anxious sure but not nervous anymore. More confident as this feels like engagement not passive wait to see what happens. Then again I always feel a bit confident... cocky even with adjustments. Testing for c-diff due to everything being so wacky; not good but at least that is a bit more treatable then if it's just raging crohns taking a turn and becoming extra angry. But proud I could take the sample essentially on command after eating certain foods and taking encouraging maneuvers to move it along a bit quicker lol sometimes there are benefits no matter how grotesque the reality may be at its core.


----------



## Ann Morgan

Super stressed and anxious this past month. Going to see my Psychiatrist tomorrow. I am going to focus on GAD, Generalized Anxiety Disorder. I have every one of the symptoms of this disorder. I have had a lot of changes happening in my life during the past month. The worst symptom is that I cannot sleep. I went to bed at 4am this morning and then got up at 9am. Yes, I went to bed at 4am. Yikes. 

My bowels are good today so far and it is around 8pm. Only two bowel movements today and they were more formed than normal. I started taking Metamucil once a day about three days ago. I think the Metamucil is working for me.  I still am taking my two Questran packets a day to help control my diarrhea.


----------



## UnXmas

Have you tried any sleep meds, Ann?


----------



## sully1102

Roughly 12 weeks after my colostomy, and I'm back at the gym. Felt great to deadlift, even if the weight was light.

I love having a sore body from exercise, instead of dealing with pain & fatigue.


----------



## duh panda

C diff came back positive. Here's to getting that treated and hopefully be feeling loads better soon. Usually do when no longer dealing with infection on top of active disease.

 Glad to hear you're back to lifting sully! I'm looking forward to getting back to a place where working out consists of more then leisurely walks as tolerated.


----------



## 1sickpuppy

Good luck, duh panda! I just moved with Medicaid too, it can be such a pain! Hope it all goes smoothly for you. 

I'm (finally) seeing a new GI in my new town tomorrow. I'm hopeful they can do something with my meds to fix me!


----------



## UnXmas

Bad news: my X ray showed my spine is fractured.
Good news: my doctor is giving me as many painkillers as I want.


----------



## 24601

Sorry to hear about the spine fracture, UnXmas!


----------



## ronroush7

I haven't been able to go to the bathroom since a rectal exam yesterday.  Would the exam have any effect on that.  I do have pressure but can't do anything.

 2


----------



## Ann Morgan

UnXmas said:


> Have you tried any sleep meds, Ann?


I was on Lunesta for about five years ?  That was a while ago. Lunesta is one crazy dangerous drug. I would never take it again.

I was taking my C-diff medication, Vancomycin, for two weeks ( during April 2015)  and I took a dose at midnight and then went to bed at midnight every night for two weeks. This really, really screwed up my sleep schedule that I had BEFORE taking the Vancomycin four times a day! I had to take a dose at 6am and 12 noon and 6pm too. So, now my body thinks I should go to bed at midnight now !

Also, I have been using my computer / cell phone during the night hours before I go to bed. This is a big mistake. Electronic devices should not be used before a person goes to bed. I have been trying to really limit my nightly and daily use of my computer / cell phone. 

I need to control my anxiety better during the day, then at night I won't be all hyped up !  I need to start using my CBT coping skills more often .... things like doing art work, listening to relaxing music, being out in nature, thinking positive thoughts, making a daily gratitude list, living in the moment, talking to my neighbors, getting out of my apartment more often.  I had to stay home while I had the C-diff and so I was home the entire month of April !   So now I have to get back to my regular DAILY schedule too. 

Thanks for listening.:rosette1:


----------



## Ann Morgan

I have had three bowel movements today and all were diarrhea. I did not eat any foods yesterday that would do this to my bowels. I ate really boring food and I was at home all day long. And as far as I remember I took both my Questran and my Metamucil. So I was stumped this afternoon about the watery diarrhea. Of course, I was starting to panic because I had the c-diff in April 2015. The good news is that I have not had a bowel movement since 1:30pm and it is now 8:19pm. My life is so strange. I know when I have bowel movements and how many and then what the bowel movements are like. And then I have a crazy medication schedule for all of my medications that I have to follow every day. Pills, Questran, Metamucil, Pills, Questran, Pills. I have even started to set the alarm on my cell phone for all of the times I have to take medications during the day so I don't forget. CRAZY !:sign0085:


----------



## UnXmas

ronroush7 said:


> I haven't been able to go to the bathroom since a rectal exam yesterday.  Would the exam have any effect on that.  I do have pressure but can't do anything.
> 
> 2


One day isn't long so I wouldn't worry yet. How often do you go normally? Did you have to take any laxative or do any other prep to empty your bowel prior to the exam?


----------



## UnXmas

24601 said:


> Sorry to hear about the spine fracture, UnXmas!


Thanks, but - and this shows how screwed up I am - I really was pleased to have the increase in painkillers.

I've had the back pain getting worse for well over a year so confirming it was from a fracture was neither here nor there to me in that respect. It has spurred  my GP into taking all sorts of new measures to fight my osteoporosis. Though one of these I was thinking of starting a thread about. I've got a prescription for Alendronic acid. My GP said it's terrible for reflux, gastritis, and stomach or throat inflammation (of which I have lots). She said I didn't have to try it as I can see my rheumatologist for twice yearly injections instead. I can't see the downside of that, but I get the feeling my GP is under a lot of pressure to avoid referring me for the injections - I can only imagine it's a cost thing and the NHS doesn't want to fork out for it. So I'm trying the acid, with the understanding that if it destroys my stomach I'll give up and get the injections. So I'll start a new thread about this to see if Crohn's + acid = bad for anyone who's already tried it.


----------



## CrohnsMedicalStudent

UnXmas said:


> Thanks, but - and this shows how screwed up I am - I really was pleased to have the increase in painkillers.
> 
> I've had the back pain getting worse for well over a year so confirming it was from a fracture was neither here nor there to me in that respect. It has spurred  my GP into taking all sorts of new measures to fight my osteoporosis. Though one of these I was thinking of starting a thread about. I've got a prescription for Alendronic acid. My GP said it's terrible for reflux, gastritis, and stomach or throat inflammation (of which I have lots). She said I didn't have to try it as I can see my rheumatologist for twice yearly injections instead. I can't see the downside of that, but I get the feeling my GP is under a lot of pressure to avoid referring me for the injections - I can only imagine it's a cost thing and the NHS doesn't want to fork out for it. So I'm trying the acid, with the understanding that if it destroys my stomach I'll give up and get the injections. So I'll start a new thread about this to see if Crohn's + acid = bad for anyone who's already tried it.


Do you have any gastric or esophageal ulcerations from your Crohn's? If not, you should be ok with the Fosamax, but keep an eye out for gastric reflux. It wont affect the small or large bowel, if that's what you're concerned about.

Fosamax doesn't interact with any of the proton pump inhibitors or H2 blockers, you just shouldn't take it with anything like Tums or one of those base formulated antacids...it'll slow the proper absorption of the fosamax


----------



## duh panda

Ann Morgan, did you notice headaches while on Vanco? 

 For me its been starting as tension back of the skull then creeps behind the eyes within 1 to 2 hours after taking each and sticks around unless I hit it with Tylenol early. Not too concerned, I just hope it doesn't persist for the entire antibiotic course! On the upside seeing improvement on the bowel front feeling wise and got approved to go back to Remicade as long as antibody blood work looks good! Looking forward to Remicade... always pushed me into a better place but was too inconvenient... hoping this time is just as good and it provides relief for joints too!


----------



## CrohnsMedicalStudent

duh panda said:


> Ann Morgan, did you notice headaches while on Vanco?
> 
> For me its been starting as tension back of the skull then creeps behind the eyes within 1 to 2 hours after taking each and sticks around unless I hit it with Tylenol early. Not too concerned, I just hope it doesn't persist for the entire antibiotic course! On the upside seeing improvement on the bowel front feeling wise and got approved to go back to Remicade as long as antibody blood work looks good! Looking forward to Remicade... always pushed me into a better place but was too inconvenient... hoping this time is just as good and it provides relief for joints too!


Sorry to inject, but when I had vanco, it caused me really intense headaches...almost exactly how you were describing. I hope you can get through it, take care.


----------



## UnXmas

CrohnsMedicalStudent said:


> Do you have any gastric or esophageal ulcerations from your Crohn's? If not, you should be ok with the Fosamax, but keep an eye out for gastric reflux. It wont affect the small or large bowel, if that's what you're concerned about.
> 
> Fosamax doesn't interact with any of the proton pump inhibitors or H2 blockers, you just shouldn't take it with anything like Tums or one of those base formulated antacids...it'll slow the proper absorption of the fosamax


I do already have inflammation in my stomach and oesophagus, but from acid reflux and bile reflux.


----------



## duh panda

Ug pain is too high today, been dry heaving like crazy and just want it to pass already. Cant even keep crackers down. Think it's about time for a nap the moment soup is done and I can turn off the burner.


----------



## kikig

:yfrown:Feeling totally overwhelmed today and beating myself up over every tiny thing. 

There are so many things I want to do, and from afar I am excited but when I try to begin doing the task, I feel tired and unmotivated. 
But if I stop, then I'm afraid I won't get going again.

Even making new friends seems like a major effort and I definitely need a focus that is not my relationship, cause right now that is not doing it for me.

More surgery next week and 4 weeks of recovery and irritability for me. And add the GI problems to that

Wish I could just go back to bed


----------



## UnXmas

CrohnsMedicalStudent said:


> Do you have any gastric or esophageal ulcerations from your Crohn's? If not, you should be ok with the Fosamax, but keep an eye out for gastric reflux. It wont affect the small or large bowel, if that's what you're concerned about.
> 
> Fosamax doesn't interact with any of the proton pump inhibitors or H2 blockers, you just shouldn't take it with anything like Tums or one of those base formulated antacids...it'll slow the proper absorption of the fosamax


Also, my medication isn't Fosamax - I think that must be a brand name. Mine is just Alendronic acid.


----------



## Ann Morgan

duh panda said:


> Ann Morgan, did you notice headaches while on Vanco?
> 
> For me its been starting as tension back of the skull then creeps behind the eyes within 1 to 2 hours after taking each and sticks around unless I hit it with Tylenol early. Not too concerned, I just hope it doesn't persist for the entire antibiotic course! On the upside seeing improvement on the bowel front feeling wise and got approved to go back to Remicade as long as antibody blood work looks good! Looking forward to Remicade... always pushed me into a better place but was too inconvenient... hoping this time is just as good and it provides relief for joints too!


I did not notice any side effects while on the Vancomycin.


----------



## Ann Morgan

duh panda said:


> Ug pain is too high today, been dry heaving like crazy and just want it to pass already. Cant even keep crackers down. Think it's about time for a nap the moment soup is done and I can turn off the burner.


  I HATE DRY HEAVES !  I know what you are going through. If I don't take my Questran I get really sick, and dry heaves is one thing that happens to me. Also a few years ago when I was prepping for a colonoscopy I got really sick too. The prep now-a-days is much easier for me to tolerate.


----------



## Ann Morgan

kikig said:


> :yfrown:Feeling totally overwhelmed today and beating myself up over every tiny thing.
> 
> There are so many things I want to do, and from afar I am excited but when I try to begin doing the task, I feel tired and unmotivated.
> But if I stop, then I'm afraid I won't get going again.
> 
> Even making new friends seems like a major effort and I definitely need a focus that is not my relationship, cause right now that is not doing it for me.
> 
> More surgery next week and 4 weeks of recovery and irritability for me. And add the GI problems to that
> 
> Wish I could just go back to bed


Sending hugs your way.


----------



## Ann Morgan

Why do I sometimes sabotage my own health by eating foods that I know I shouldn't eat ? I want to eat food with FLAVOR and of course, I cannot. One day I ate chicken parmesigion and it was so delicious. I had to suffer later, especially the terrible acid reflux ( I already take Pantoprazole but with spaghetti sauce I have to also take Extra Strength Gaviscon. )  The other day I was at a cute little bakery restaurant. I ate a tasty grilled cheese sandwich and some potato salad ( fancy grilled cheese with mozzarella cheese, tomato and basil. The fancy potato salad had dijon mustard in it with the big mustard seeds AND red onion ). It was so tasty. Yup, I had to suffer after that meal too. I took Gaviscon right away and had diarrhea later on. So I guess pizza is totally out of the question too ? Oh, yeah, I just ate Taco Bell so I suppose tomorrow won't be a happy colon day either. :-(  :-(


----------



## duh panda

Ann Morgan said:


> Why do I sometimes sabotage my own health by eating foods that I know I shouldn't eat ? I want to eat food with FLAVOR and of course, I cannot. One day I ate chicken parmesigion and it was so delicious. I had to suffer later, especially the terrible acid reflux ( I already take Pantoprazole but with spaghetti sauce I have to also take Extra Strength Gaviscon. )  The other day I was at a cute little bakery restaurant. I ate a tasty grilled cheese sandwich and some potato salad ( fancy grilled cheese with mozzarella cheese, tomato and basil. The fancy potato salad had dijon mustard in it with the big mustard seeds AND red onion ). It was so tasty. Yup, I had to suffer after that meal too. I took Gaviscon right away and had diarrhea later on. So I guess pizza is totally out of the question too ? Oh, yeah, I just ate Taco Bell so I suppose tomorrow won't be a happy colon day either. :-(  :-(


Over the years I've gotten to the point where I don't have trouble staying away from "bad" foods when in the midst of flaring/ active disease... just isn't worth it... unless it's a salad. Salad is the ONE thing I give into regularly and just say screw it! I'll take the consequences! Because the craving for fresh, flavorful and CRUNCHY food that is not sweet or salty is just too much to ignore at times. 

It also helps that I determine food choices for the household so if dairy is being extra bothersome it just stays off the grocery list and out of the kitchen until I get back to a point of trying to reintroduce foods. No one else seems to miss it.. but I suspect it's because they go out and have that Big Mac now and then while I do what needs to be done. I've found eating before going out for whatever reason (errands, lunch with others, etc.) keeps me from going for foods I will later suffer for.


----------



## kikig

@Ann Morgan - I think its just human.....like going grocery shopping when you are hungry (now the proud owner of Aisle 14!) or my mother eating garlic ("girls, i will be so sick" as she stuffs herself full of garlic bread in front of my sister and I who have to listen to her whining about feeling ill a few hours later - note she does not have any GI problems, she just doesn't tolerate lots of garlic well...and yet....)


----------



## ronroush7

It is early.  So far all right.

 2


----------



## UnXmas

Ann Morgan said:


> Why do I sometimes sabotage my own health by eating foods that I know I shouldn't eat ? I want to eat food with FLAVOR and of course, I cannot. One day I ate chicken parmesigion and it was so delicious. I had to suffer later, especially the terrible acid reflux ( I already take Pantoprazole but with spaghetti sauce I have to also take Extra Strength Gaviscon. )  The other day I was at a cute little bakery restaurant. I ate a tasty grilled cheese sandwich and some potato salad ( fancy grilled cheese with mozzarella cheese, tomato and basil. The fancy potato salad had dijon mustard in it with the big mustard seeds AND red onion ). It was so tasty. Yup, I had to suffer after that meal too. I took Gaviscon right away and had diarrhea later on. So I guess pizza is totally out of the question too ? Oh, yeah, I just ate Taco Bell so I suppose tomorrow won't be a happy colon day either. :-(  :-(


What kinds of foods do you mean by foods with flavour? Pizza should be fine if you're careful with the topping. It may have just been the mustard seeds and onion that made you ill. I think you've said before that fruit and vegetables give you problems, but tomato puree and tinned (skinless) tomatoes on a pizza aren't difficult to digest like fruits and veg with fibre are. Does dairy give you problems generally? If not, the cheese probably wasn't what made you feel bad so that should be ok on a pizza too. And the bread-like pizza base shouldn't be much of a problem. So then it's just picking some easy-to-digest toppings (or just have a plain cheese and tomato pizza!). Ham? Tuna? Or many types of meat or fish may be ok, just avoid anything with a lot of spice. Or try other types of cheese (or a lactose free alternative if dairy is an issue). Or make up your own pizza recipe with any of your "safe" foods. I've even seen recipes for peanut butter pizzas!

Do you know what your main "triggers" are for your various symptoms? E.g. is it spice that causes diarrhoea, or dairy, or fibre or very rich or greasy foods? And do you find the foods that worsen your reflux/heartburn are those that are typically known to worsen them - citrus fruit, pepper, chilies, caffeine, fizzy drinks?

If you like, tell me your trigger foods and I'll have a go at giving you some food suggestions. I've learned a lot about avoiding foods because of digestive problems but I've also learned a bit about what you can use as substitutes


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## UnXmas

Got my pre-op appointment for my next surgery.


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## kikig

UnXmas said:


> Got my pre-op appointment for my next surgery.


Me too! Actually had it today for my op on Thurs - not directly GI related though.
Appointment with my GI later today to see the latest results

I had a "mansplaining" incident with the doctor which was grossly apparent when I had to see a female doctor 20 mins later to discover the former male doctor had not written down anything I requested.

Feeling a bit iffy today as I made mexican tacos yesterday and it looks like the amount of low fat cheese was not a super bright idea.
Oh well


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## UnXmas

Mine's not a GI surgery either, it's my bladder this time.


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## duh panda

Feeling better physically with the c-diff under control but sometimes the whole Crohn's cycle/ chronic thing really gets me. Doesn't seem to matter how long its been, just hits me hard on some days that even at my best it's a degree of what other's my age can manage or achieve every day. It seriously irritates me that I don't get that bounce back feeling where there's a huge difference between periods of normal illness (colds, infections etc. those treatable, manageable, get over kind of things) and the rest of the time: it's all just varying degrees of feeling like crap that requires far more compromising on a day to day basis then I like.


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## ronroush7

Ate something yesterday that didn't agree with my stomach.  Still feeling the effects.

 2


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## kikig

Post surgery feeling quite ok. For some reason, my stomach seems to have held up this time and is only mumbling every once and a while. Less pain this time so I didn't have to O/D on paracetamol.

I suspect it was the albumin infusion I forced them to give me post surgery.:dusty:

Luckily I had a friend come to collect me and she got to witness my patient requests being totally ignored and overruled for no good reason (post infusion removal of IV/clarification of their postop protocol and what was actually done to me).
She was a bit shocked as she hadn't expected it, and assumed they would understand I was quite different to the average patient.

It was nice to know I'm not losing the plot when I get so frustrated with the medical profession. They do ignore me, and they only follow protocol as opposed to considering the particular patient


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## Ann Morgan

duh panda said:


> Feeling better physically with the c-diff under control but sometimes the whole Crohn's cycle/ chronic thing really gets me. Doesn't seem to matter how long its been, just hits me hard on some days that even at my best it's a degree of what other's my age can manage or achieve every day. It seriously irritates me that I don't get that bounce back feeling where there's a huge difference between periods of normal illness (colds, infections etc. those treatable, manageable, get over kind of things) and the rest of the time: it's all just varying degrees of feeling like crap that requires far more compromising on a day to day basis then I like.


Me too.  Sending hugs your way. You are not alone.


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## Ann Morgan

Fatigued. Bloated. Watching TV programs that are sad. It is too hot to go outside. I just ate 700 calories of chocolate.


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## Ann Morgan

UnXmas said:


> What kinds of foods do you mean by foods with flavour? Pizza should be fine if you're careful with the topping. It may have just been the mustard seeds and onion that made you ill. I think you've said before that fruit and vegetables give you problems, but tomato puree and tinned (skinless) tomatoes on a pizza aren't difficult to digest like fruits and veg with fibre are. Does dairy give you problems generally? If not, the cheese probably wasn't what made you feel bad so that should be ok on a pizza too. And the bread-like pizza base shouldn't be much of a problem. So then it's just picking some easy-to-digest toppings (or just have a plain cheese and tomato pizza!). Ham? Tuna? Or many types of meat or fish may be ok, just avoid anything with a lot of spice. Or try other types of cheese (or a lactose free alternative if dairy is an issue). Or make up your own pizza recipe with any of your "safe" foods. I've even seen recipes for peanut butter pizzas!
> 
> Do you know what your main "triggers" are for your various symptoms? E.g. is it spice that causes diarrhoea, or dairy, or fibre or very rich or greasy foods? And do you find the foods that worsen your reflux/heartburn are those that are typically known to worsen them - citrus fruit, pepper, chilies, caffeine, fizzy drinks?
> 
> If you like, tell me your trigger foods and I'll have a go at giving you some food suggestions. I've learned a lot about avoiding foods because of digestive problems but I've also learned a bit about what you can use as substitutes


My triggers: grease, fat, vegetables, fruit, fast food, fatty pork products, seafood, most meats....cafeteria food, buffet food, catering food, etc. I can eat: dairy, pasta, cereal, candy, bananas, potatoes, lean beef, pork loin, lean chicken, breads. I don't care to cook at all. I have a hot-plate, toaster oven, and a microwave. I am lazy. I don't care to buy, touch or cook meat. I used to make a daily healthy smoothie, but I am taking a smoothie break right now. I need to put a lot more effort into creating a healthy diet.  I just have to care about myself more. I know I can do it ?


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## UnXmas

Here's the first things that came to mind reading your lists:

Breakfast cereals
Porridge
Cereal bars or breakfast biscuits?
Sandwiches or crackers or toast with low fat cheese spread instead of butter. 
Low fat dairy like cottage cheese, yoghurts, rice pudding
Tinned fruits or baby food pots of pureed fruit
Tinned soups
Avocados  
Eggs and toast (eggs cooked however you like, boiled, scrambled, etc. with ketchup or whatever you can tolerate)
Ready-made potato salad and pasta salads
I know you said you can't tolerate vegetables, but have you tried very well cooked root vegetables - carrots, butternut squash, turnips, parsnips, swede?
For proper meal ideas: ready-made quiches, ready-made fish-cakes, baked potato (without skin if that's a problem), pasta with ready-made sauce (whichever sauces you can tolerate), instant rice, omelettes, chicken or fish in breadcrumbs.

Hopefully there's something in there you like!


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## ronroush7

Diarrhea last night and this morning.

 2


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## duh panda

It has been a slow week, a string of days where it takes me twice as long to do my normal every day activities, the kind of days where a shower doesn't happen until afternoon or evening; but its looking like today is off to a pretty good start. 

C-diff is gone and have been able to get back to 100lbs. Hurrah! Pain's been staying pretty consistent under a 5, and for the first time in months i'm tolerating solid foods, small amounts of lettuce, and smoothies. Apparently family and friends were getting a bit freaked out, it has been a while since they've seen me _that _sick and run-down.


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## Ann Morgan

UnXmas said:


> Thanks, but - and this shows how screwed up I am - I really was pleased to have the increase in painkillers.
> 
> I've had the back pain getting worse for well over a year so confirming it was from a fracture was neither here nor there to me in that respect. It has spurred  my GP into taking all sorts of new measures to fight my osteoporosis. Though one of these I was thinking of starting a thread about. I've got a prescription for Alendronic acid. My GP said it's terrible for reflux, gastritis, and stomach or throat inflammation (of which I have lots). She said I didn't have to try it as I can see my rheumatologist for twice yearly injections instead. I can't see the downside of that, but I get the feeling my GP is under a lot of pressure to avoid referring me for the injections - I can only imagine it's a cost thing and the NHS doesn't want to fork out for it. So I'm trying the acid, with the understanding that if it destroys my stomach I'll give up and get the injections. So I'll start a new thread about this to see if Crohn's + acid = bad for anyone who's already tried it.


I had been taking the generic form of Fosamax  ( Alendronate ) but I got lazy and quit taking it for some reason. My Endocrinologist takes care of my Thyroid and my Bones. So I had to confess to her that I had not been taking my Fosamax as she prescribed. She is going to try to get me an infusion drug for my bones, it would be a one time infusion that would last me two years ( and then no more taking Fosamax ).  I will see if my health insurance company will approve the infusion drug. I have a very high fracture risk for my lumbar spine area.  PS: I don't know why I read my medical papers because I just get more anxiety reading the part that says " Fracture Risk: High".  I am SO CAREFUL about not tripping or falling down !!!:eek2:    I have never heard of Fosamax being bad for my Ulcerative Colitis ? .....but then I learn something new every few months that I never knew before.


----------



## Ann Morgan

duh panda said:


> Ann Morgan, did you notice headaches while on Vanco?
> 
> For me its been starting as tension back of the skull then creeps behind the eyes within 1 to 2 hours after taking each and sticks around unless I hit it with Tylenol early. Not too concerned, I just hope it doesn't persist for the entire antibiotic course! On the upside seeing improvement on the bowel front feeling wise and got approved to go back to Remicade as long as antibody blood work looks good! Looking forward to Remicade... always pushed me into a better place but was too inconvenient... hoping this time is just as good and it provides relief for joints too!


I heard that Remicade is expensive ?   I think they offered it to my sister ( she has RA ) but she was not ready to go that route yet.  And my Rheumatologist mentioned it to me several years ago, but I don't think my arthritis at this time is bad enough for the Remicade. 

I had a neighbor here at my apartment complex who was on the Remicade and it was very expensive for his insurance company, but I don't think that he had to pay anything ? :ywow:


----------



## Ann Morgan

duh panda said:


> Ann Morgan, did you notice headaches while on Vanco?
> 
> For me its been starting as tension back of the skull then creeps behind the eyes within 1 to 2 hours after taking each and sticks around unless I hit it with Tylenol early. Not too concerned, I just hope it doesn't persist for the entire antibiotic course! On the upside seeing improvement on the bowel front feeling wise and got approved to go back to Remicade as long as antibody blood work looks good! Looking forward to Remicade... always pushed me into a better place but was too inconvenient... hoping this time is just as good and it provides relief for joints too!


I had no side effects from the Vancomycin. But I still don't think my C-diff is gone. I was never re-tested at the end of my Vancomycin treatment. My new Gastroenterologist did not find it necessary to re-test. Even my Endocrinologist said the same thing.     ????


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## Ann Morgan

UnXmas said:


> I do already have inflammation in my stomach and oesophagus, but from acid reflux and bile reflux.


How often should I get an endoscopy ?    I have had three endoscopies in the past. I have had four colonoscopies. I had acid reflux ( is that the same as "GERD" ? )     For some reason I have had more acid reflux the last three months or so. New Gastroenterologist does not seem concerned. I just take Extra Strength Gaviscon almost every day ( just one pill ) in addition to my Protonix. But I have not had to take the Gaviscon almost every day before. I am concerned that I may have scaring or whatever in my esophagus. Why is it so hard for me to find a good Gastroenterologist that is registered with my insurance company !   Darn my previous, super-great Gastroenterologist for not being listed with my new health insurance company.........he is the best.


----------



## Ann Morgan

duh panda said:


> It has been a slow week, a string of days where it takes me twice as long to do my normal every day activities, the kind of days where a shower doesn't happen until afternoon or evening; but its looking like today is off to a pretty good start.
> 
> C-diff is gone and have been able to get back to 100lbs. Hurrah! Pain's been staying pretty consistent under a 5, and for the first time in months i'm tolerating solid foods, small amounts of lettuce, and smoothies. Apparently family and friends were getting a bit freaked out, it has been a while since they've seen me _that _sick and run-down.


Okay, I know some of these things are off - topic, but did you get re-tested for your C-diff after your treatment for the C-diff was over with ?   I will go on the C-diff page now. Thanks for listening.


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## UnXmas

Ann Morgan said:


> I had been taking the generic form of Fosamax  ( Alendronate ) but I got lazy and quit taking it for some reason. My Endocrinologist takes care of my Thyroid and my Bones. So I had to confess to her that I had not been taking my Fosamax as she prescribed. She is going to try to get me an infusion drug for my bones, it would be a one time infusion that would last me two years ( and then no more taking Fosamax ).  I will see if my health insurance company will approve the infusion drug. I have a very high fracture risk for my lumbar spine area.  PS: I don't know why I read my medical papers because I just get more anxiety reading the part that says " Fracture Risk: High".  I am SO CAREFUL about not tripping or falling down !!!:eek2:    I have never heard of Fosamax being bad for my Ulcerative Colitis ? .....but then I learn something new every few months that I never knew before.



Do you know what your T scores are (the measure they use for bone density)?

I've already got fractures and I'm a lot younger than you! Be careful, but don't stress about it.


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## UnXmas

Ann Morgan said:


> How often should I get an endoscopy ?    I have had three endoscopies in the past. I have had four colonoscopies. I had acid reflux ( is that the same as "GERD" ? )     For some reason I have had more acid reflux the last three months or so. New Gastroenterologist does not seem concerned. I just take Extra Strength Gaviscon almost every day ( just one pill ) in addition to my Protonix. But I have not had to take the Gaviscon almost every day before. I am concerned that I may have scaring or whatever in my esophagus. Why is it so hard for me to find a good Gastroenterologist that is registered with my insurance company !   Darn my previous, super-great Gastroenterologist for not being listed with my new health insurance company.........he is the best.


Yes, GERD (GastroEsophageal Reflux Disease) and acid reflux disease are the same thing. Do you have a gastroenterologist at all at the moment? I'm not sure how often you should have scopes. But reflux will not usually do anywhere near the amount of damage that IBD can do. So as you only have IBD affecting your colon as you have UC, you're not likely to need upper scopes as often as you should have colonoscopies to check on your UC. You will probably only need another upper endoscopy to check the status of your reflux if your reflux symptoms are deteriorating. I would check with a doctor if you can.


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## duh panda

Ann Morgan said:


> I heard that Remicade is expensive ?   I think they offered it to my sister ( she has RA ) but she was not ready to go that route yet.  And my Rheumatologist mentioned it to me several years ago, but I don't think my arthritis at this time is bad enough for the Remicade.
> 
> I had a neighbor here at my apartment complex who was on the Remicade and it was very expensive for his insurance company, but I don't think that he had to pay anything ? :ywow:


It is very expensive. But i've never been one to shy away from any treatment option due to expense... usually there are assistance programs provided by the makers of the drug (for remicade I believe it's still called Remistart). I've never paid out of pocket for any biologics even if insurance is unable/ unwilling to cover initially or at any point down the road. My back up plan is just understanding the role of bankruptcy for individuals in our country - not ideal but it's a back up "wipe the slate clean" sort of idea that provides a bit of comfort when looking at medical price tags.



Ann Morgan said:


> Okay, I know some of these things are off - topic, but did you get re-tested for your C-diff after your treatment for the C-diff was over with ?   I will go on the C-diff page now. Thanks for listening.


I haven't been retested. I'm not noticing any symptoms which is good enough for me, although I've been out of area and dr. might want to retest once I'm back just to make sure. She tends to spring stool samples on me with no warning... which so far has never been an issue beyond going and getting some ice cream or pizza and waiting 20 minutes.

 I wouldn't be surprised if most of us who have had it at one point or another are colonized but going through a round of treatment knocks it down enough for the rest of the bacteria in our gut to balance and keep c-diff in check. I just figure I'll (try) to remember that I have a tendency to get C-diff following extended periods of time on full-system affecting antibiotics like Flagyl and to keep an eye out for c-diff symptoms following/ during any period of time that requires it.


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## teeny5

Ate a Greek yogurt today and been jacked up since! Extremely gassy and a lovely feeling of fullness/tightness in my throat...just on the edge of nausea. Taking my pills tonight was especially fun. I guess I will not be enjoying yogurt for now.


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## Ann Morgan

How am I feeling ..... tired, as usual.     I did not know where to say this, but is anyone out there a Vegan ?    I am thinking about becoming a Vegan.  I eat the most horrible of foods and have had a problem with obesity for 30 years.  I was a Vegetarian 20 years ago and was quite successful and felt great.  Thanks for listening.


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## UnXmas

I gave you a link to Vegan Ostomy's site ( http://www.veganostomy.ca/ ) when I replied to you on the other thread where you asked this. However, I want to add that becoming vegetarian or vegan is not necessary in order to eat healthily or lose weight. Being vegan could be difficult if your UC makes high fibre foods a problem (not impossible, but your diet would be limited).

I think being vegan or vegetarian is a very good thing and I'd fully support that choice of diet if you were making it for ethical reasons; I think there are many good ethical and environmental concerns that support being vegetarian and vegan. But I just wanted to make the point that becoming vegan/vegetarian is not necessary in order to lose weight or to stop eating "horrible" foods. I think I made some suggestions to you before about some foods you could eat that wouldn't worsen your UC symptoms, but let me know if you'd like some healthy and/or low calorie suggestions, whether vegan, vegetarian or otherwise. 

It's good to see you wanting to change your diet and reduce the risks to your health that can come from obesity. I hope it will help you to feel better.

I think you'd probably get the most responses to this topic if you start your own new thread on it in the Diet forum: http://www.crohnsforum.com/forumdisplay.php?f=17 Start a new thread and give it a title like "Being a vegan with IBD" or something similar and it will be more likely that you'll get more responses.


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## Ann Morgan

UnXmas said:


> I gave you a link to Vegan Ostomy's site ( http://www.veganostomy.ca/ ) when I replied to you on the other thread where you asked this. However, I want to add that becoming vegetarian or vegan is not necessary in order to eat healthily or lose weight. Being vegan could be difficult if your UC makes high fibre foods a problem (not impossible, but your diet would be limited).
> 
> I think being vegan or vegetarian is a very good thing and I'd fully support that choice of diet if you were making it for ethical reasons; I think there are many good ethical and environmental concerns that support being vegetarian and vegan. But I just wanted to make the point that becoming vegan/vegetarian is not necessary in order to lose weight or to stop eating "horrible" foods. I think I made some suggestions to you before about some foods you could eat that wouldn't worsen your UC symptoms, but let me know if you'd like some healthy and/or low calorie suggestions, whether vegan, vegetarian or otherwise.
> 
> It's good to see you wanting to change your diet and reduce the risks to your health that can come from obesity. I hope it will help you to feel better.
> 
> I think you'd probably get the most responses to this topic if you start your own new thread on it in the Diet forum: http://www.crohnsforum.com/forumdisplay.php?f=17 Start a new thread and give it a title like "Being a vegan with IBD" or something similar and it will be more likely that you'll get more responses.


Thanks for your reply and information. I want to see my Nutritionist for a one time visit to see what she says about becoming a Vegan. I will see what I decide to do after I get her advice and read up more about it online. Fiber is no problem for me. I started to take Metamucil once a day and it helps me. Also, I am looking forward to making smoothies again, I love them. I have been on a smoothie "break". After I saw the video last night of the dairy cows, cows, chickens and pigs I was very uncomfortable. I don't know how anyone could have a job in that industry and then go home at night and sleep well. The parts of some of the videos, though, show farmers deliberately abusing their animals just because they could. Well, enough of this talk on this thread. This is not the topic here and we need to remain on topic.


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## Ann Morgan

How do I feel today ?  Bloated. Tired. I am wondering if I will ever find a good Gastroenterologist. My good one is not my new Health Insurance Plan. I am never going back to the Gastroenterologist I saw in 2014. I guess the Gastroenterologist I saw twice this year is OK, maybe I am judging him too quickly ?  Take Care.


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## ronroush7

Mostly bloated.

 2


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## ronroush7

Ann Morgan said:


> How do I feel today ?  Bloated. Tired. I am wondering if I will ever find a good Gastroenterologist. My good one is not my new Health Insurance Plan. I am never going back to the Gastroenterologist I saw in 2014. I guess the Gastroenterologist I saw twice this year is OK, maybe I am judging him too quickly ?  Take Care.


Hope you find a good GI soon.

 2


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## Hayz

Does anyone else get aching and pain under their ribs?? I currently have a stricture in my TI and am having a flare at the moment.


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## duh panda

Today I am mostly just pissed off. Must have some sort of super villain esq. bacteria in my gut for antibiotics to fail so very spectacularly on such a regular basis. Or maybe that with the combination of an epic prescription order fail days after I'm leaving the state. But if one more person tells me it is  "quiet the journey" I'm on and to just keep having patience I'm going to rage. Ugly, Green, Monster, Hulk type of rage.


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## Ann Morgan

panda: Am I the only person that thinks being pissed off is a good thing ?  When I am pissed off I take action and I get things done. I am just mad and I am going to find a solution and be assertive about it !   So, watch out world !

When I am down and depressed I don't get anything done and I am just tired and lazy. I don't Self-Advocate and I just let things happen around me without getting involved.

So, I think it is okay to be pissed off.  Stay Strong and let that Ugly Green Monster out every once in a while !   :-0


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## Ann Morgan

I eat terrible foods, I am obese, my BMI is off the charts and I never feel good. I am going to become a Vegan. Today I am printing a few simple Vegan recipes from the Internet. ( I was a Vegetarian 20 years ago for a few short years ).  I have lost all interest in nutrition and preparing meals for myself and have put very little effort into shopping for food. I need to focus on something positive in my life and trying new foods will be interesting.   Thanks for listening.


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## duh panda

Thanks Ann Morgan! It is refreshing to hear from someone who doesn't necessarily see being pissed off as a solely negative thing. 

I usually tend to let frustration run its course but since there's no way to solve any of the issues causing it it's just driving me insane today... and when that happens the anger tends to swing toward feeling down and not achieving anything beyond a bit of vengeful cleaning. But hey, I suppose that means I should have less to do tomorrow?!


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## Ann Morgan

duh panda said:


> Thanks Ann Morgan! It is refreshing to hear from someone who doesn't necessarily see being pissed off as a solely negative thing.
> 
> I usually tend to let frustration run its course but since there's no way to solve any of the issues causing it it's just driving me insane today... and when that happens the anger tends to swing toward feeling down and not achieving anything beyond a bit of vengeful cleaning. But hey, I suppose that means I should have less to do tomorrow?!


It took me years to figure out that the way my older sister handles stress is by cleaning ! :ywow:  ( Hey, she has cleaned walls before.  I don't think I have ever cleaned a wall ? )   So now I understand her better.  Organizing and cleaning is her way of letting go of some steam.


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## UnXmas

Ann Morgan said:


> I eat terrible foods, I am obese, my BMI is off the charts and I never feel good. I am going to become a Vegan. Today I am printing a few simple Vegan recipes from the Internet. ( I was a Vegetarian 20 years ago for a few short years ).  I have lost all interest in nutrition and preparing meals for myself and have put very little effort into shopping for food. I need to focus on something positive in my life and trying new foods will be interesting.   Thanks for listening.


Good decision!


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## UnXmas

My BMI is off the charts on the opposite side. I've gained around 7kg in the last year, that doesn't sound very much, but I did have a bowel perforation in the middle of that time, which didn't help. If gaining weight actually made me feel better I might try harder, but eating more just messes up my digestive system, and when I have been a healthy weight in the past, I didn't feel any better. My only motivation has been staying out of hospital.


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## UnXmas

Ann, am I right in remembering that you have osteoporosis? I think I posted about mine earlier in this thread. Anyway, my bone density is terrible, and I was recently diagnosed with a fractured spine, and also with osteoarthritis of the spine. I will soon be starting physiotherapy for it though, which I am really looking forward too.


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## kikig

Massive skin absess removed, feeling very very sore and sorry for myself. Hopefully the pathology report doesn't reveal any more than a staph infection as the source


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## Ann Morgan

Good Grief.  I decided to go out into the hellish heat, 114 degrees, this afternoon to go to Sprouts !   What was I thinking.  Got what I call "heatstroke", but maybe it is just a severe sensitivity to the intense heat ?  I have really bad sensitivity to the sun on my skin now too.  I have to buy an umbrella soon to keep the sun off of my neck and arms.  It WAS nice to get out of my apartment instead of hibernating because of the heat. I got out the other day to get a haircut. And tomorrow I have one appointment that should not take very long. Guess I will have to just do one thing each day while the heat here is so crazy. No more TRYING to run several errands in one day, when I do that I also don't drink enough water and I don't eat because if I eat I will have to have a BM and I would rather have a BM at home.          Thanks for listening.


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## teeny5

I am super frustrated with work today. Asked yesterday to work an extra shift on top of my already ridiculous schedule. Just feel like when will it ever be enough!?! I do create the issue some myself by working extra hours when I shouldn't, but what really pissed me off this time is that the extra shift is to pick up the slack because others can't get their job done. Why can't everyone just do their work???? I vented to my boss, but she basically gave me the "it's what needs to be done, we need your help" speech. Whatever.

That's my rant...off to work I go.


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## Ann Morgan

How am I feeling today ?   Well, I ate a whole box of Good and Plenty Candies so I feel guilty for eating the WHOLE BOX of candies instead of one serving. A whole box is 630 calories. No good for me to be a Vegan if I am going to eat candy.........good grief !   Thanks for listening.


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## Jen C

Ok, I'm in. I am feeling frustrated. So tired of dealing with daily symptoms. Yesterday, I broke down and cried and wished that I would just die (no, I am not suicidal but just felt overwhelmed). Then I think of others who have way worse diseases than I do, and that helps me deal somewhat better. Anyway, today, so far, everything is under control. I wish there was a cure.


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## Jen C

Well, my doctor "upped" my dosage from 3 Entocorts a day to 4. Eventually, if this keeps up, I'll probably be taking a bottle a day (sarcasm). I'm so fed up. I'm not sleeping either which doesn't help my mood any. So, today is not starting out to be a good day. I have to figure out a way to remain positive when everything seems so bleak.


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## UnXmas

Don't give up, Jen C. It can take a while to figure out the best meds for you, but if you have a good doctor and you keep trying you should find a way to improve. Is it med side effects that are stopping you sleeping? When I take prednisone I can't sleep, but my doctor prescribes me amitriptyline now which helps me sleep through anything and everything seems so much better when you've had a good sleep. Tell your doctor about any side effects that are bothering you. There is usually a way to help.


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## duh panda

Yep, keep with it! UnXmas made really good points.

Whenever I'm having a terrible no good day - getting frustrated over how long i've been waiting for meds to do more then just get me by, or down over limitations, frazzled due to side effects or lack of sleep that's when I remember it's not always about staying positive - sometimes it's about just doing whatever you can to hold on till you can get to that point of positively, strength and confidence. Sometimes allowing myself or giving myself permission to have a bad day turns it all around. 

I think one of the most damaging things is to carry this idea that because it's chronic and will stick around that the negative emotions or reactions to dealing with illness and all it brings should fade with time. When they dont disappear and fade it's easy to shove it aside and try to be positive all the time rather then continuing to dive right into the mess and move through it before shaking it off.


----------



## Sndy4444

Jen C said:


> Ok, I'm in. I am feeling frustrated. So tired of dealing with daily symptoms. Yesterday, I broke down and cried and wished that I would just die (no, I am not suicidal but just felt overwhelmed). Then I think of others who have way worse diseases than I do, and that helps me deal somewhat better. Anyway, today, so far, everything is under control. I wish there was a cure.


You arent alone. I cry often. I don't feel i have the support i need from co-workers or family. No one knows what I'm going through. I'm hungry and tired.


----------



## Sndy4444

teeny5 said:


> I am super frustrated with work today. Asked yesterday to work an extra shift on top of my already ridiculous schedule. Just feel like when will it ever be enough!?! I do create the issue some myself by working extra hours when I shouldn't, but what really pissed me off this time is that the extra shift is to pick up the slack because others can't get their job done. Why can't everyone just do their work???? I vented to my boss, but she basically gave me the "it's what needs to be done, we need your help" speech. Whatever.
> 
> That's my rant...off to work I go.


That's me at my job everyday with the coworkers i have!


----------



## Sndy4444

Hayz said:


> Does anyone else get aching and pain under their ribs?? I currently have a stricture in my TI and am having a flare at the moment.


I'm in alot of pain with that now and in a flare. Glad you said that because i was scared this wasn't normal. I've been in a flare for two weeks now and it's a bad one.


----------



## pjm357

Been in a constant flare since Nov last year. My gut is jumping around with activity and hell I may as well move into the bathroom been in there atleast 20-30 times today :/  Crohn's gives a new meaning to the phrase Feeling Crappy now doesn't it :/


----------



## Jen C

I had a good today for the first time in a while. I decided I would try my essential oil that is for digestive issues, and sure enough, I had it under control all day long. I pay good money for doctors and prescription meds and this oil did more in one day than the others have in weeks. I will keep trying that to see if it wasn't just a fluke.


----------



## teeny5

Had a pretty great day today...and then got a bloody nose - boo!


----------



## Sndy4444

Received a letter today from my water company. Test showed Coliform Bacteria in water system. Said they violated a drinking water standard. Said people with severely compromised immune systems may be at increased risks..my flare could be because of this! Really???


----------



## kikig

My day started at 0630, had to go to the doc to get my abscess checked. It is healing but man it is taking a long time and its still leaking. They said its not infected, but still don't have the pathology results back from the lump he extracted due to a long running postal strike. I hope that strike doesn't end up costing me.

I haven't been paying enough attention to my diet this week and I'm feeling it since yesterday evening. Bloated and unsettled tummy, nothing is being digested correctly. And I'm exhausted.
I know its my own fault, but every once in a while, I'd like to get away with being naughty. Oh well.

Thank crunchie its Friday, and I get to stay in bed tomorrow past 7am!


----------



## duh panda

Jen C said:


> I had a good today for the first time in a while. I decided I would try my essential oil that is for digestive issues, and sure enough, I had it under control all day long. I pay good money for doctors and prescription meds and this oil did more in one day than the others have in weeks. I will keep trying that to see if it wasn't just a fluke.


Which essential oil do you use?  and in which way? Thanks!


----------



## teeny5

Sooooo tired today :yfrown:


----------



## Jen C

duh panda said:


> Which essential oil do you use?  and in which way? Thanks!


First of all, let me say I am not a doctor of any kind.... and I don't sell essential oils....

I use a product from DoTerra called DigestZen. I use it topically, by applying 2 drops directly on my belly and rubbing it in.

It's a blend of oils: ginger, peppermint, tarragon, fennel, caraway, coriander, and anise. I was in the middle of a super long post explaining the attributes of each of these oils when my power went out.:thumbdown: So, if you want more info on any of these oils individually, you could probably google it. But like I said, it's a blend of all these oils but the product itself is DigestZen. Hope this helps.


----------



## duh panda

Thanks! That is certainly helpful. I've looked and worked a bit with essential oils (primarily as aromatherapy, but some tinkering with diluted topical application) and certainly found them helpful to varying degrees especially with pain management. Have wondered about digestive blends but been hesitant to really commit and purchase anything specific over feeling overwhelmed with options/ different combinations available.


----------



## Jen C

duh_panda, I took my Entocort this morning (3 of the 4 prescribed pills, so 9 instead of 12 mg) and my DigestZen, and I had another day of diarrhea-free glory! There may be something to this. I wish I would have thought of it sooner.:thumright:

Yesterday, I took all 12 mg, today 9.... tomorrow I will try 6.


----------



## duh panda

This morning I am feeling sore. Internally and muscularly. But I don't mind so much about the internal because of the muscular. It's a nice change from the discomforts of lying down or sitting for long periods sleeping from exhaustion and the prednisone insomnia means I've been getting up earlier then I was and out for a walk before it hits 80 degrees and I'm at risk to burn like a crisp. Starting Remicade tomorrow and a bit nervous since I haven't gotten back the antibody blood results and it'll be my third time going through the loading doses; but confident in the nurses and my doc that if anything goes sideways they will handle it well.


----------



## Jen C

I am feeling better today than yesterday. For some reason, yesterday I was nauseous and that is not a common symptom for me. Today, no nausea. Continuing my topical DigestZen oil and Entocort. I tried to get down to just 6 mg of the Entocort, but that didn't work so well. It seems like I'm stuck on Entocort. I was hoping the essential oil would completely eliminate its need, but not at this time. But I'm in a more optimistic mood today than I have been in a while, so that's a plus.


----------



## ronroush7

I wish there was a cure myself.  God bless you all.

 2


----------



## kikig

My intestines are swollen, so I feel like a complete balloon - its temporary but everything is a struggle today. I have to go to a wedding on Friday so I have to get this back under management by then.
I just feel like my tummy and entire midsection is 3 times normal size and my lymphoedema is affected everywhere else too.

Oh and my super arrogant coworker just knows how to lean on my last nerve. I try to be fair and give everyone the benefit of the doubt, but man alive he over-estimates his own intelligence 

Its going to be a long day


----------



## blacklung06

Well my day started off great, and now i feel like a big flare up is coming soon. I am so tired of having flare ups and i have been doing pretty good. I have been like two months without a flare up. Well now i done used all my sick time and vacation time, im screwed at work. Well at least i have my FMLA working and i cannot get fired. I found out yesterday, im going to be a father. My very first child and i cannot wait and very excited to be able to experience fatherhood. Also i new to the forum and this group, everybody seems pretty nice and very welcoming. Any advice on telling my boss i have to miss again bc my stomach hurts and i get this look, like really suck it up.


----------



## kikig

Congrats @blacklung06!!

I'm not sure about US employment law but FMLA is 12 weeks right? And all of it has been used? Would it do any good to get a certificate from the doctor, or does that apply in the US?

Do you have any inkling what is causing the flare? Recent change in medication? How is your diet?

I don't know how private you are about your medical condition, but have you elaborated a bit to your employer about Crohn's? So the employer understands its not just a stomach ache? I hate providing details myself cause I think its none of their business really, as long as I have certification to prove I am genuinely sick, but european employment law is different.


----------



## pjm357

kikig said:


> Congrats @blacklung06!!
> 
> I'm not sure about US employment law but FMLA is 12 weeks right? And all of it has been used? Would it do any good to get a certificate from the doctor, or does that apply in the US?
> 
> Do you have any inkling what is causing the flare? Recent change in medication? How is your diet?
> 
> I don't know how private you are about your medical condition, but have you elaborated a bit to your employer about Crohn's? So the employer understands its not just a stomach ache? I hate providing details myself cause I think its none of their business really, as long as I have certification to prove I am genuinely sick, but european employment law is different.


We have FMLA in the US. We can take it all at once or intermittently. Once your DR signs the paperwork a employer cannot ask you for any further information unless they receive information you are taking FMLA days unfounded. That is to say if someone you work with see;s you at the lake or something of that nature. I had to use a lot of FMLA at my last job in this manner. They use to try to tell me that I had to bring a Doctors statment every time I was out. But after reading the laws I confronted the head of human resources about it and they backed down about the DR's statements. But I still had idiots on the job who thought they were medical professionals and could tell weather or not I was sick by looking at me. needless to say some of them got wrote up for there ignorant comments and innuendo's .


----------



## Ann Morgan

I had a Reclast infusion for my bones ten days ago. I am having terrible muscle and joint pain. I am pissed off about this pain. I have not had this level of pain since last year. Although I still have to live with limited mobility in my neck and shoulders, I have not had the PAIN for a while. The pain in my shoulders effects my sleep and makes me very grouchy during the day. If this pain continues I WILL ask for prescription pain killers. I looked up some Reclast stuff online and found out that some folks have pain for months after their infusion. So I was given an infusion for my bones and now the side effects are making my other condition worse.... SAY WHAT ! How stupid. I do not want to see any more doctors, I am sick of doctors. 

My colon health is improving and that is a very good thing. I don't have to rush to the bathroom any longer and I am starting to become a Vegan now. And I take Probiotics too. The Vancomycin I took for my C-diff in April seems to have worked. I am now looking up Supplements that I will need to take because I am a Vegan. 

Sorry this is so long and probably off topic, but I had to get this stuff "off of my chest" as they say.

Thanks for listening.


----------



## Jen C

Had a good day. Wow, I really have nothing more to add. LOL :blush:


----------



## duh panda

Overall a very good day. Excited to see what the next month or so brings.

Just got home from first (third time) Remicade loading dose. Nothing exception to really note except feeling reallllly tired which I don't really remember from the first two times, but it's been a while. Certainly encouraged that I made it to the first infusion date without feeling like I was backsliding in any way without the next Entyvio dose I had been scheduled for/ pursuing. 

Slept hard on the 3 hour drive home - that kind of sleep where you wake up thinking it's been 10 minutes but far more time has passed! Been a month or so since I've completely conked out like that. Bedtime pretty shortly is sounding appealing right now.


----------



## Jen C

Ugh! I am so irritable lately. I think it may be the entocort... not sure. Will have to research if that's a common side effect. Otherwise, I'm doing okay.


----------



## ronroush7

Spent a long time on the toilet when I first got up. Back there again.

 2


----------



## UnXmas

I am feeling extremely full and bloated, and have been all day.


----------



## duh panda

Started physical therapy and home exercises for an old knee fracture and to just get back strength/ efficiency in legs due to ongoing poor healing, bouts of erythema nodosum throwing off my stride, and repeat injury/ weakness in the joint. Never thought trying to lift my leg a couple inches off the ground could be so difficult or that crohns would have such an overall impact on my body. But, already noticing increased stability when standing/ walking, decreased pain and feeling encouraged that in time i'll get back to other activities including a more engaged yoga practice! Ready for my afternoon nap. Stay cool all! This heat is killer.


----------



## king

I started getting different sorts of abdominal discomfort that a GP says has nothing to do with crohns. I really hope he's right! But will have to check with my specialist in a few days


----------



## Jen C

Feeling decent today. I had a good night's sleep last night for the first time in a month, but only because my dr prescribed me lorazepam to help with the anxiety, which I think is a side effect from the Entocort. I do have an appointment to see him on Tuesday. I would love to get off the Entocort altogether; I think that's why I'm anxious, irritable, not sleeping, etc.... More to come but, today, not bad. :thumleft:


----------



## ronroush7

Bloated this morning and been to the toilet three times.

 2


----------



## Caitlin84

Jen C said:


> Feeling decent today. I had a good night's sleep last night for the first time in a month, but only because my dr prescribed me lorazepam to help with the anxiety, which I think is a side effect from the Entocort. I do have an appointment to see him on Tuesday. I would love to get off the Entocort altogether; I think that's why I'm anxious, irritable, not sleeping, etc.... More to come but, today, not bad. :thumleft:


I only took Entocort for a very brief time in high school and I didn't sleep for 24 hours. Then came home from school and slept until the next morning--couldn't do any homework. Because of how much school I had already missed they immediately took me off of it. I don't know if its a symptom that would have resolved over time, we didn't take the chance to find out. I have trouble sleeping on prednisone too, though not nearly as badly, and I too take sleeping pills at time. That wasn't something they considered when I was in high school. Sorry you aren't tolerating it great.


----------



## Ann Morgan

king said:


> I started getting different sorts of abdominal discomfort that a GP says has nothing to do with crohns. I really hope he's right! But will have to check with my specialist in a few days


It is always good to get a second opinion if you are having doubts.  

Last year I saw a new Gastroenterologist and was concerned when he told me to discontinue taking my two colon medications after my colonoscopy came back normal. 

So, I saw my previous Gastroenterologist this year for a one time visit ( he is no longer on my health insurance plan so I paid cash for my office visit ).  He said I should continue taking both of my colon medications and he wrote me a new, one year, prescription for my Lialda. I also take Questran every day, but my Primary Care Physician takes care of my refills for the Questran. 

Crazy, but I saw a NEW NEW Gastroenterologist THIS year because I had C-diff in April. At least the NEW NEW doctor did the right thing and prescribed me the Vancomycin antibiotics ( pills ) and that seemed to take care of the C-diff.   

And it took me two tries last year to find a new Primary Care Physician !:yfaint:


----------



## Ann Morgan

Well, I normally take two Questran Packets a day.  For some reason yesterday I thought I could get by with only taking one.  Stupid me..... I had diarrhea four times today because I did not take two Questran Packets yesterday.  Good Grief !


----------



## Ann Morgan

Okay, I don't know where to ask this.    Has anyone had a Reclast Infusion for their bones and experience any side effects from it ?   I had a Reclast Infusion two weeks ago and I have been suffering bad joint pain in some areas where I already have arthritis.  I am really pissed off about this pain because my doctor never told me anything about the drug. And the infusion people never gave me any paperwork about side effects.  I guess I should have been more proactive and asked questions, but I did not at the time.  I am hoping that the pain goes away. Believe it or not, there are support groups, online, for people who take or have taken Reclast !


----------



## Ann Morgan

Me again.  I think that there is a support group here in my city for people with Crohns and UC.   Does anyone here participate in a support group in their city ?    I have never talked about my UC with any group of people except on this website.  Have a good weekend.


----------



## Sherada

*Feeling Crampy*

Its been a while since I've written on here,  I had been doing really well on Humira.  I have been exercising about three times a week, and eating a normal yet lowresidue diet.  My stomach started acting up yesterday morning and has not let up.  The only thing i could do yesterday was lay on the couch with cramping pain all day and only ate a small bit of grilled chicken.  I hate not knowing why the pain just comes on all of sudden... i was hoping it would subside but when i woke up this morning it is back and being at work doesn't help... i feel so exhausted... and then about every 5 to 10 min my stomach clenches with searing pain and subsides sometimes with a loud obnoxious rumble.  all i can think about is going home and lying on the couch


----------



## UnXmas

Sherada said:


> Its been a while since I've written on here,  I had been doing really well on Humira.  I have been exercising about three times a week, and eating a normal yet lowresidue diet.  My stomach started acting up yesterday morning and has not let up.  The only thing i could do yesterday was lay on the couch with cramping pain all day and only ate a small bit of grilled chicken.  I hate not knowing why the pain just comes on all of sudden... i was hoping it would subside but when i woke up this morning it is back and being at work doesn't help... i feel so exhausted... and then about every 5 to 10 min my stomach clenches with searing pain and subsides sometimes with a loud obnoxious rumble.  all i can think about is going home and lying on the couch


My stomach's been making awful noises lately, it's not very discreet. :redface: Though now I have a stoma at leasts it's physically impossible for me to pass wind, which saves me a lot of worry that I might embarrass myself.

I hope you'll be able to take some time off and lie down, and that the pain passes.


----------



## UnXmas

Ann Morgan said:


> Okay, I don't know where to ask this.    Has anyone had a Reclast Infusion for their bones and experience any side effects from it ?   I had a Reclast Infusion two weeks ago and I have been suffering bad joint pain in some areas where I already have arthritis.  I am really pissed off about this pain because my doctor never told me anything about the drug. And the infusion people never gave me any paperwork about side effects.  I guess I should have been more proactive and asked questions, but I did not at the time.  I am hoping that the pain goes away. Believe it or not, there are support groups, online, for people who take or have taken Reclast !


You should be able to find guides online, e.g. http://www.rxlist.com/script/main/mobileart-rx.asp?drug=reclast&monotype=rx-desc&monopage=0


----------



## UnXmas

I'm feeling rubbish today. I slept so well last night, I didn't think I'd feel rubbish again so soon, but spent ages waiting while my doctor ran late.... and I'm just generally bored and fed up. I like listening to the rain though.


----------



## Ann Morgan

Sherada:  I hate not knowing why my colon symptoms change too. There seems to be no apparent reason for it at all when I try to figure out WHY. 

I think we all probably spend a lot of time searching for just the right doctor(s) and trying to find the right medications that work well for our symptoms ? Then trying to see what we CAN and CANNOT eat ?

For me, trying to find a "balance" in my life can be VERY difficult. By balance I mean getting the right doctors, treatments,medications, diet, exercise, sleep....meeting all of my physical, psychological and emotional needs. Is that really.possible ?

You did not say whether you were vomiting or having bloody stools. Are you able to stay hydrated ? 

I am not a doctor, so anything I write here is just my opinion based on my own life exeriences. Maybe you could just CALL your doctor's office for help? Don't be in pain too long before you get help. 

Lynda


----------



## Tony H

I feel good today despite the really bad weather .


----------



## Ann Morgan

I am happy with my colon/bowel movements right now. Lately I just have two bowel movements and they are in the morning hours, and they are pretty "normal" ( at least as "normal" as I can get). I don't bloat as much as I used to either lately. And I have not had to take my Extra-Strength Gaviscon.


----------



## teeny5

Feel like crap today.  Just don't want to eat...mild nausea, but not in pain so that's good. Been drinking Ensure today, we'll see how dinner goes. Going to try some soup.


----------



## duh panda

I am feeling NOT patient tonight. Anxious, antsy, frustrated that at 24 my mom feels the need to ask if I'll be okay spending a night alone and taking care of the house/ animals (cats, a goat, fish. Nothing demanding). She called my younger sister to "check in" on me. Sometimes I swear she forgets that I lived independent from her cooking, cleaning, keeping up with basic daily tasks and more for 4 years before this last year and if all else fails and if disaster were to strike she drilled the whole "call 911 in an emergency" thing.


----------



## Jen C

I am going to see my doctor today. I am hoping he can get me off the entocort and onto something else due to the side effects I get, most notably my extreme irritability. I got a good night's sleep last night for the first time in a long time so I'm hoping that this will also help my attitude. Looking forward to a better day.


----------



## Caitlin84

duh panda said:


> I am feeling NOT patient tonight. Anxious, antsy, frustrated that at 24 my mom feels the need to ask if I'll be okay spending a night alone and taking care of the house/ animals (cats, a goat, fish. Nothing demanding). She called my younger sister to "check in" on me. Sometimes I swear she forgets that I lived independent from her cooking, cleaning, keeping up with basic daily tasks and more for 4 years before this last year and if all else fails and if disaster were to strike she drilled the whole "call 911 in an emergency" thing.


That reminds me of coming home from college for the summer. It's like my parents would forget I had been feeding myself for the previous 9 months. I feel your frustration, it can be smothering.

That being said, now that I'm a mom, you will always be your mom's baby. I'm 30 and my parents still want to take care of me. I feel like I am finally old enough to not feel smothered by it and appreciate it. Just set clear boundaries when you can, grit your teeth when you can, and vent away here! :voodoo:


----------



## kikig

Unsure, my abscess results are back - indicates lymphoma. Lucky me


----------



## UnXmas

So sorry kikig. Is the diagnosis confirmed?


----------



## duh panda

Caitlin84 said:


> That reminds me of coming home from college for the summer. It's like my parents would forget I had been feeding myself for the previous 9 months. I feel your frustration, it can be smothering.
> 
> That being said, now that I'm a mom, you will always be your mom's baby. I'm 30 and my parents still want to take care of me. I feel like I am finally old enough to not feel smothered by it and appreciate it. Just set clear boundaries when you can, grit your teeth when you can, and vent away here! :voodoo:


Haha it _is _just like when coming home from college, but a bit easier to set boundaries since there's been longer to establish them then just a summer or holiday break!

I vent here and can usually laugh about it with her after a few hours or the next day pointing out the absurdity of it all. Helps too to have siblings where we can call each other be like... guess what crazy over-protective naggy thing mom said today to express her love :lol2: 

To give her much deserved credit, I think her concern stemmed more from knowing I would be anxious or more emotionally distraught (and probably less likely to eat, etc.) because of the sheer silence of being 15 miles out of town and away from all main roadways/ highways. She knows me so well, and I'm finally finding her knowledge of me a useful resource rather then "mother knows best" irritant! I never thought about it till we were discussing how the night went (I wasn't able to fall asleep till after 1 a.m. and slept terribly waking up every hour or so) but I haven't been in a completely silent environment without other people in years. Usually there's at least a cat or dog around for company and noise and not even the coyotes were out.


----------



## Caitlin84

I don't think I could sleep in total silence. I have an app on my phone in case I ever find myself trying to sleep in a silent place. =)


----------



## kikig

UnXmas said:


> So sorry kikig. Is the diagnosis confirmed?


Pretty much, not entirely unexpected. My crappy immune system leaves me vulnerable to this, I had lymphoma 11 years ago so unfortunately been here before.

On the plus side, I managed to get my oncology appointment bumped up from next week to tomorrow. Sometimes closed doors can be opened


----------



## duh panda

Been feeling good overall since starting up Remicade again. Been able to taper pred. To 15 mg. The lowest it's been in over a year without symptoms/ body crashing. I am so excited to finally be functioning a bit better. Now if only I Would gain a good 15 lbs+ I'd be at my baseline goal for wellness! I haven't been sleeping much despite feeling exhausted and like I could sleep for days by 3 every afternoon. This morning I was able to finally sleep in 20 mins past when I've been waking up but my stomach woke me up with cramps and it's own demands, apparently it's grown accustomed to eating by 6 a.m. and won't tolerate waiting  such a good sign; just wish it would have waited till more like 7!


----------



## teeny5

Got some blood tests done today. Been sleepy all day. Feeling anxious about my colonoscopy on Monday.


----------



## Sherada

Thanks to all who responded to my last post  I did end up calling my doctor who immediately had me go in for blood work yesterday and offered meds for cramping... for now I am feeling better, still have not had any what i would call normal BM's though, but I have been able to eat and keep food down today and my stomach pain has also subsided so i am very glad for that.  Hoping this trend continues


----------



## Ann Morgan

I am doing good today.


----------



## ronroush7

Not feeling the best.

 2


----------



## Ann Morgan

I am bloated.


----------



## kikig

Hit and miss, emotional outbursts. My eating is mirroring, eating everything in sight for 2hrs, then nothing for 4 or 5 hrs eventhough I know I'm hungry.

cooking a roast for a friend to force the eating into a normal pace.

rubbish


----------



## ronroush7

I hate this disease.

 2


----------



## Ann Morgan

I had not eaten watermelon for a very long time. Yesterday I bought some watermelon at the store ( pre-packaged) . I ate it yesterday and it was SO good. Today: having watery diarrhea all day long with cramping and feeling bloated. Well, I couldn't eat watermelon years ago and I STILL cannot eat it!  Bummer !  

I bought some cantalope too, but I have not eaten it yet. Ahhhhhhh ! :-0


----------



## duh panda

I have much better luck with cantaloupe then watermelon but can't eat a lot of either without repercussions! Hope the cantaloupe treats you okay 

Not feeling too terrible today. Exhausted and keep nodding off in the middle of projects. But guts been feeling good especially considering this weekend consisted of eating out, and eating much richer foods then I'm accustomed on an all day every day basis while on a family vacation. Although, tried a glass of wine for the first time in a year and it hit me far too hard and fast leaving a hangover effect that was most notably... unpleasant. Live and learn I guess. 

Looking forward to tomorrow's Remicade infusion and hope those who have been having rough moments can find things to brighten your day.


----------



## ENTheory07

ronroush7 said:


> i hate this disease.
> 
> 2


amen!!!


----------



## Jen C

Staying positive. Sleeping better so that's good.


----------



## Sherada

my blood tests came back unsatisfactory showing inflammation... *surprise.*  Stomach started acting up again on Saturday.... probably shouldn't have eaten a corn on the cob and a bag of kettle corn >.< ... stomach is still cramping today but am going to try and get through the work day and not focus on it... I am extremely sick of uneducated people and do not feel like discussing my illness with anyone anymore... I've gotten enough "you don't look sick"'s  to last a lifetime


----------



## ENTheory07

I miss kettle corn lol...
Yeah I understand that.  Someone at work asked me if it was all in my head.  I said, "No, right now it feels like it is all in my body".


----------



## kikig

No longer sleeping deeply, went to sleep at midnight, woke at 3 and then at 0530. Everyone keeps asking me if I feel ok, its making me panic. I feel fine, I don't want to analyse it further, I leave that to my oncologist.

My stomach is upset again due to my anxiety, but its not too bad as I keep drinking my whey protein. It could also be the antibiotic which I've been prescribed to combat my miserable CD4 levels (73 when they should be closer to 200). Or the stark realisation that it is highly unlikely I will be able to have children. Take your pick from that nice mix.

I'm so anxious to get started on my treatment, its going to be nasty, I just want to get on with it and give myself the best chance.


----------



## duh panda

Between suspecting blood and increased symptoms after a highly improved 2weeks and seeing substantial blood (though still lower pain, thank goodness) tonight before bed, the late night prednisone mania and finally falling asleep only to wake up an hour later from a peaceful turned down right horrific dream in pain and the worst night sweat in months.

 I'm so ready for morning to arrive. Just when I think things had leveled off, wasn't needing 3 hour midday naps and I'd maybe finally caught a break, too. 

Whew, hopefully writing this was enough of a break where I won't fall back into that same dream like I tend to do when burnt out and stressed physically and mentally.


----------



## UnXmas

kikig said:


> No longer sleeping deeply, went to sleep at midnight, woke at 3 and then at 0530. Everyone keeps asking me if I feel ok, its making me panic. I feel fine, I don't want to analyse it further, I leave that to my oncologist.
> 
> My stomach is upset again due to my anxiety, but its not too bad as I keep drinking my whey protein. It could also be the antibiotic which I've been prescribed to combat my miserable CD4 levels (73 when they should be closer to 200). Or the stark realisation that it is highly unlikely I will be able to have children. Take your pick from that nice mix.
> 
> I'm so anxious to get started on my treatment, its going to be nasty, I just want to get on with it and give myself the best chance.


When are you likely to start treatment? My circumstances are different, but I'm not able to have children. I know I won't be able to help you feel any better about it, but if you want someone who is also in that situation to listen to you, feel free to send me a pm.


----------



## Jen C

Doing okay today. My doctor has me on a new anti-depressant which is helping with my mood. I'm still having to take a sleeping pill to get at least 6 hours of solid sleep each night, which stinks. My colitis has abated somewhat...... so this is the best I've felt in a couple of months.


----------



## teeny5

That's great Jen C!


----------



## kikig

UnXmas said:


> When are you likely to start treatment? My circumstances are different, but I'm not able to have children. I know I won't be able to help you feel any better about it, but if you want someone who is also in that situation to listen to you, feel free to send me a pm.


Looks like 27th July or 3rd August. I'm very grateful they are getting the ball rolling quickly, it helps!

And thank you for the offer!!:hug:


----------



## UnXmas

I actually had a good doctor's appointment this morning :cheerss: We need more of them around here. I was seen on time :ywow: (because I was the first patient of the day - it's worth getting up and out early in the morning for that). We discussed embarrassing things without me getting embarrassed and my doctor made it easy for me. And I came out with two scans and a blood test booked as well as a referral to a new specialist, so it was productive too. One scan I feel will be a wasted trip to hospital but my doctor is taking a better-safe-than-sorry approach which I can't complain about, and the other scan, referral and blood test I've been wanting to get sorted for ages but other things kept getting prioritised so I am happy I am finally getting started on them! Also talked about a new med that's safer than one I'm on now which I don't want to give up, so I'm glad I'm finally being given another option rather than just being told I need to stop my current medication.


----------



## UnXmas

I lost some weight though.... but my doctor didn't try to rush me into hospital so I guess that's good; I've been gaining for several months so she's giving me the chance to gain on my own first.


----------



## KimboHiggs

Question... whats dipping?!


----------



## UnXmas

KimboHiggs said:


> Question... whats dipping?!


I wondered what this is too. I think it's to do with smoking.


----------



## KimboHiggs

UnXmas said:


> I wondered what this is too. I think it's to do with smoking.


Ahh okay! Haha that makes alot more sense now


----------



## duh panda

KimboHiggs said:


> Question... whats dipping?!


Such a random question! But dipping in the U.S. is generally in reference to the use of chewing tobacco. At least, it is in the redneck county I graduated high school from.


----------



## ronroush7

My stomach feels like I need to go but have not been able to.

 2


----------



## teeny5

Stressed out! Neck hurts, arm hurts, tired, grouchy...just a mess today. Time to relax with the hubby and watch movies I think.


----------



## UnXmas

duh panda said:


> Such a random question! But dipping in the U.S. is generally in reference to the use of chewing tobacco. At least, it is in the redneck county I graduated high school from.


I think KimboHiggs was referring to the first post of this thread, so not entirely random.


----------



## duh panda

UnXmas said:


> I think KimboHiggs was referring to the first post of this thread, so not entirely random.


Yep, I'd say you're right. I scanned the first page again for the first time in a long while. Whoops.


----------



## Jen C

My colitis is under control; now I'm working on my emotional state. If it's not one thing, it's another.


----------



## kikig

Got some good news on Friday - localised b cell lymphoma. I start radiation tomorrow, by far the lesser of the evils. So I'm feeling very grateful.

Now to try and quell my stress levels and get my digestion back in hand!


----------



## duh panda

I've certainly been testing my limits lately with exercising and today I ended up calling my mom for the first time in months to come meet me out on my walk so I could get home accident free. Made it! So glad to have her around or always a quick phone call away to walk me through and keep me distracted from pain, etc. until I can get to where I need to be.


----------



## Jen C

Feeling okay today. Trying to focus on blessings in my life versus negative stuff in my life. Either that or my meds are working well. :ybiggrin:


----------



## 1sickpuppy

My UC may have just ruined a relationship that I thought was going fine. I had a migraine all day so my whole day was wasted being unable to get off the couch. And I've started getting these weird sensations in my hands and feet...first it was tingling now it's like hot spots. The migraine has left my head and apparently settled in my joints. 

Well at least the Uceris is working. Now if only my insurance will approve the preauth so I can continue taking it. Sigh.


----------



## ronroush7

My stomach isn't the best and I am worried about my father who is traveling on his own with dementia. 

 2


----------



## ronroush7

Awful bloated today. 

 2


----------



## kikig

Exhausted, the heat kept me up until 3am. But I think its only a partial factor here as my thyroid meds need to be increased too.
And bloated, I feel like a hippo and I feel that all my movements are awkward and full of effort


----------



## Charlotte.

Back in a flare - oh no!


----------



## duh panda

Completely wiped out. It's either the heat, meds. or just life in general but today I've been suffering from what I've come to deem "prednisone brain." Not as constant the lower my dose goes, but days when it hits requires an extra bit of humor to get through. This morning it took me 20 minutes and 6 trips between my bedroom and kitchen to remember what the hell I was trying to do - I was trying to fill up my water bottle so I'd drink the fluids I'm supposed to. My focus and attention span is worse then that of a squirrel during Spring.


----------



## fuzzy butterfly

Tired, achy, and apparently stupid, as my boss said all her staff were stupid today, ye stupid for working there lol.hey ho not easy to get another job when your old and ill haha. Best wishes to all...


----------



## kikig

mandyk said:


> Tired, achy, and apparently stupid, as my boss said all her staff were stupid today, ye stupid for working there lol.hey ho not easy to get another job when your old and ill haha. Best wishes to all...


Seriously, she is allowed to say that?


----------



## kikig

Tired, back to being tired. Everything is an effort, and even the slightest thing is a cause of stress.

Started to come out in a patchy itchy rash which I can only relate to tiredness and stress as I haven't changed a single other thing with my creams or diet.

Entirely possible its due to radiation as well.

Sheesh, some times I just wonder why I bother fighting so much you know? It seems counter intutitive to have to fight this much for every day existence. 

I feel like I bounce from crisis to crisis the last year and so much that I am almost unable to deal with periods of stability and normality


----------



## fuzzy butterfly

kikig said:


> Seriously, she is allowed to say that?


Not really but that's just the tip of the iceberg !!!! She is a crime!!


----------



## kikig

mandyk said:


> Not really but that's just the tip of the iceberg !!!! She is a crime!!


She wants reporting to HR at a minimum!


----------



## fuzzy butterfly

Hi thanks for the support on the boss issue, only problem is she is  the actual owner,no hr either but she thinks that being horrible gets        respect,when any decent person knows that is most certainly NOTthe case....We all hate her ,well hates a strong word i dont really like to use really,but she is the she :devil: of all bosses,thank god we dont have to deal with her that often :voodoo:..... wish the job market was better ,but im on the lookout for a new job,il be off as soon as the right one comes along.. enough of the rant , hope i find you all well today folks ?


----------



## crs

Not good.. abdominal pain and really tired  my back hurt me my stomac hurt me..damn.. i just hate this days...


----------



## fuzzy butterfly

duh senior moment !!! dont ask lol the plot is being lost :eek2:


----------



## buttER

kikig said:


> Tired, back to being tired. Everything is an effort, and even the slightest thing is a cause of stress.
> 
> Started to come out in a patchy itchy rash which I can only relate to tiredness and stress as I haven't changed a single other thing with my creams or diet.
> 
> Entirely possible its due to radiation as well.
> 
> Sheesh, some times I just wonder why I bother fighting so much you know? It seems counter intutitive to have to fight this much for every day existence.
> 
> I feel like I bounce from crisis to crisis the last year and so much that I am almost unable to deal with periods of stability and normality


kikig you are amazing. I know about that fight for every day existence. It is called surviving rather than living and somehow we get through it. Its not surprising that when there are more normal periods then the body and mind use that time to release the stress - and we can end up feeling worse just because of that. I am having just such a crisis at the moment. Physically I am pretty good but mentally I am a mess because I don't need to be so tough any more so it looks like I am going to the other extreme.
We can do it together!


----------



## duh panda

King of Orange said:


> kikig you are amazing. I know about that fight for every day existence. It is called surviving rather than living and somehow we get through it. Its not surprising that when there are more normal periods then the body and mind use that time to release the stress - and we can end up feeling worse just because of that. I am having just such a crisis at the moment. Physically I am pretty good but mentally I am a mess because I don't need to be so tough any more so it looks like I am going to the other extreme.
> We can do it together!


I second that Kikig is downright amazing. I think, we get so used to the horrific crap we witness/ experience/ battle and manage on a daily basis for extended period of times that it's a struggle in itself to switch gears once physical survival needs quit being visibly in our face. It's at that point when the mental effects of chronic illness push their way to the forefront and start making demands. 

Currently, compared to how the last years have been... the past few weeks I'm consistently feeling pretty fine. I'm crediting it to the reintroduction of Remicade. Although docs. disagree on my opinion of "fine", I prefer not to measure how I'm feeling based on the medical outlook - as long as I'm no longer blacking out from pain, can manage some form of exercise/ movement in my days and hold a decent weight it's good. 

Gut pain is down, but pain during BM is a real struggle still and the off and on reappearance of fresh blood is certainly concerning. I'm sure I'm not the only one who cries on occasion at the sight of blood before steeling oneself to face the world again. The most aggravating part is how invisible everything is - not just the disease itself, or the majority of symptoms, but how the worst most surreal aspects are faced down alone, physically isolated behind doors while being betrayed by our own bodies.

Absolutely stir crazy from being stuck inside with family waiting on edge with a current evacuation notice in effect and the air quality so poor stepping outdoors in unbearable. I love them, but no one should be stuck inside this long in summer with family and no air conditioning.


----------



## kikig

Awww, thanks everyone :ghug:

We are all amazing :dance:


----------



## fuzzy butterfly

pretty good today in more ways than one, as my ex manager rung me yesterday to say she has put me forward to someone she knows at a rival garden centre, for a job as their visual merchandiser,:dance: .. so im going to ring her friday and see if i cant get myself a new job, with more money to boot.. :ywow: and if i do it will really p...off my nasty boss big time..utahere: i hope,with luck yeah!!!


----------



## KimboHiggs

Really bad today!
Have been up all night on the bathroom floor in agony! Overheating passing out and crying in pain!
 
Hate days like these x


----------



## fuzzy butterfly

aw Kimbo, i know how that feels hun , im sorry your having such a rough time, sending you get well soon :hug:,s xx


----------



## fuzzy butterfly

Duh panda, thanks for your support :thumright: .hope your well today panda !!


----------



## KimboHiggs

The past few times I've flared I've had chest pains too... A doctor mentioned previously they think the crohns may now also affect my oesophagus area... Could this be the cause of the pain?! My tummy is in absolute agony and very loud gurgling


----------



## duh panda

Thanks Mandy! Today's a slow start but not bad at all  hoping it stays like this! I am a fan of uneventful slow days


----------



## duh panda

KimboHiggs said:


> The past few times I've flared I've had chest pains too... A doctor mentioned previously they think the crohns may now also affect my oesophagus area... Could this be the cause of the pain?! My tummy is in absolute agony and very loud gurgling


This time around I was experiencing really bad upper gi pain and a lot of chest pain I didn't really connect to possibly being from active disease, had scope that showed inflammation and some small ulcers just before stomach, in stomach and below. My gi suspected stomach acid being a culprit to irritating the ulcers leading to the pain so she suggested omeprozole (anti acid) to knock it down. Helped tremendously and seems to have given the rest it needed to heal some as there's no more of THAT type of pain even after taking the omeprozole out of the ewuation. As crummy as it is might see if your GI will scope the upper to get a visual on things especially if it's never been done or has been a while.


----------



## fuzzy butterfly

duh panda said:


> Thanks Mandy! Today's a slow start but not bad at all  hoping it stays like this! I am a fan of uneventful slow days


your welcome, me to love slow uneventful days as well,:ysmile:


----------



## Om3ga1

So far so good today. Worry about tomorrow when it comes.


----------



## fuzzy butterfly

hi it seems a shame this thread has gone silent,, hope it can be revived !! 
 so here goes , iv just got a new job n so has my son, so tihngs are on the up! i have crohns, but doing very well at the mo, since ileostomy last year n reversal this feb. hope this msg finds you all well...


----------



## ronroush7

My stomach hasn't settled down today.

 2


----------



## Caitlin84

mandyk said:


> hi it seems a shame this thread has gone silent,, hope it can be revived !!
> so here goes , iv just got a new job n so has my son, so tihngs are on the up! i have crohns, but doing very well at the mo, since ileostomy last year n reversal this feb. hope this msg finds you all well...


Congrats on the job!:cheers:


----------



## fuzzy butterfly

Hi Caitlin, nice to see you again, thanks hun I'm really looking forward to it. Hope you are well hun


----------



## Om3ga1

Gotta go get my meds today but that all.


----------



## Caitlin84

mandyk said:


> Hi Caitlin, nice to see you again, thanks hun I'm really looking forward to it. Hope you are well hun


I feel great! I feel like a human being again. Who knew cutting out part of your body could feel so good?! :wink:


----------



## fuzzy butterfly

Caitlin84 said:


> I feel great! I feel like a human being again. Who knew cutting out part of your body could feel so good?! :wink:


Hi hun, oh i know it was the best thing that happened to me, i couldn't believe the relief i got from my re-section it was blessed :banana::banana:
 so glad you are feeling so much better, heres to that remaining so for a very long time :beerchug:, you take care n keep well hun :hug:


----------



## ronroush7

My stomach is not well and for a little while I was feeling a headache.  Mentally,  I feel like I could be doing better too.

 2


----------



## crs

Not feeling so good.. my stomach  is going crazy... i'm at work and i'm a little sad but i don't know why...


----------



## fuzzy butterfly

Hi all, sorry to see some are feeling rough at the mo, so sending you all get well wishes and hugs.
My stomach has been a little gripey this last week, not sure if it's subconscious nerves for new job start on wed,s , as I don't feel I'm aware of any nerves  oh well onwards n upwards..


----------



## nenethebean

ronroush7 said:


> My stomach hasn't settled down today.
> 
> 2


That makes 2 of us


----------



## duh panda

Today is average, I have plans to make hamburgers with a garlic bacon aioli spread and I couldn't be more stoked to dig my fingers into some of that raw ground beef, shape it, cook it, entice all of my senses, and then eat it. Bleeding, pain, cramping be damned - food is my passion and I love finding ways to create meals that meet both my dietary needs and desire for a varied diet in flavor and texture.

But I am feeling dark and sad and tired of being told I'm twisted, or too twisted for social acceptance, and need to rant a bit.

Yesterday, the general consensus of my case being a crap shoot was yet again verified. I met with one of the top GI's in the area, a GI who has had an extensive focus in crohn's and IBD, a GI with ample experience, and I was told she did not feel comfortable taking me on as a patient due to the extensiveness of the disease and lack of options. 

I am tired of being shuffled around, tired of no one being able to help, and tired of people not being capable of bluntly stating the truth. I'm not the most tactful individual, I find beating around the bush utterly useless, and wish dr's would quit treating me as if I'm new to it all. It was 9 years Monday. 9 years of failures, minimal successes, no remission, not even minimal disease activity. 9 years of "what am I to do with you" before my life changes and I find myself moving on to a new doctor. 

I don't have space in my life for humble or hesitant physicians, I want to find another with a damn God complex who is willing to prioritize their passion for medicine and IBD above any other aspect in their life - including love, including family, including serving others - I want their passion and desire for self-fulfillment to come first and I want to capitalize off that passion. Apparently, this is a twisted desire because we live in the age where love is everything, bodies are supposed to heal themselves, unicorns roam free and frequently, and we don't use one another. A world without disease that is ruled by love is all fine and lovely and a wonderful aspiration - but it's not life's reality and is utter bullshit. 

Despite my generally positive approach to each day, it's only possible because I see and have a need to acknowledge the darkness and pitfalls of the current course of treatment/ the disease/ life in general before I can focus on the positive. A need to acknowledge the bleeding, the lack of improvement, the eventual surgery, the constant infections, bruising, and that every Tuesday I will face a day of headaches, nausea, fatigue following my injection. Facing all the dark, scary, messed up crap I will deal with and continue to deal with so the rest of my life can remain in tact. I do not get a break from the daily efforts because then I will lose those couple good days I do get to enjoy. 

I spend my free time researching a disease not dancing in a club. I am passionate about food and cooking, not clothes and drinking. I write because I can manipulate a world that way - I can embrace how I see it rather then trying to avoid offending one of the constant optimists in my life by speaking about something that rips their head from the clouds until they can shove it under some sand. The mistake seems to be assuming that my ability to address and acknowledge the painful, difficult or challenging aspects in life means I am unhappy. Instead, it is in these complexities - the darkness and twisted nature of life where I am happy. 

I am sad mostly just because all that doesn't seem acceptable by others and bothers them more then it bothers me as far as I can tell.

Grateful for this thread for when those daily things are just well... need a place to go. Hoping everyone's day is successful, unpredictable bellies and all.


----------



## crs

Not feeling very well i'm sad because i lost weight and can't gain it back..and i'm just siting here at 02:00 AM (Romania) thinking about life...


----------



## colitismother

I'll tell you why I'm feeling great! Seeing this article on the front page of Yahoo.com this morning about Jake Diekman, a pitcher for the Texas Rangers, and how he has battled with Ulcerative Colitis, all while competing at the highest level of his sport! Such an inspiration and I love supporting his cause and wearing his shirt supporting CCFA that Diekman created with Athletes Brand!)

Yahoo Article: http://sports.yahoo.com/blogs/mlb-b...eady-to-talk-about-his-disease-164232506.html


----------



## ronroush7

I just woke up a half hour ago but yesterday my stomach was active.


----------



## DaisyBB22

i am lost. Not diagnosed. Still in pain but not as much as I have been for the past week. Urgent care on Thursday for a new internal hemorrhoid. That was embarrassing and traumatic. Jeeze. Just got my period today so now I'm even more confused and I'm scared I'm making a bigger deal out of everything. Have an appointment with the Endocrinologist for Tuesday. GI doc is booked until Oct 28th. My GP has put an urgent request in to GI to see me sooner. Made 2 attempts to go to the ER but chickened out because I just don't know what I'm doing. I'm worried they will turn me away and not admit me if I'm not having a sweating, fainting episode from food which I haven't eaten in two days. Did ok on carnation instant breakfast last night tho! I just want to eat some food. I want to be able to go back to work. I want my happiness and energy back. I want my life back. This is rough guys. 2months of scattered symptoms ranging from nasty painful acne infection to 15lbs lost since July for NO REASON. 2005 had a Barium x-Ray test done, problem where the small intestine and colon meet. Too scared to get the endoscopy and colonoscopy done at that time and opted for Citracel. Blood test and allergy tests done last Friday, all ok except for my Vitamin D levels were low.... I work outside. It makes no sense. I'm lost. I'm sad. I feel hopeless.


----------



## ronroush7

My stomach is still feeling pretty lousy.

 2


----------



## crs

Very sad today  my grandpa passed away


----------



## fuzzy butterfly

crs said:


> Very sad today  my grandpa passed away


Aw so sorry crs, sending you my deepest sympathy..:hug::hug:


----------



## ronroush7

So sorry for these passing away.


----------



## crs

Thanks! :hug: 
Today I'm trying to be strong after my grandpa's funeral because I know grandpa loved me and didn't want for me to be depressed. So i keep my head up and try to be strong for him.. R.I.P. dear grandpa...


----------



## ronroush7

My stomach has been more active lately.


----------



## Om3ga1

Sometimes you have to take one day at a time. Today is one of those days.


----------



## ronroush7

My doctor wants me to get blood work and do a calprotectin test.  What is that?


----------



## Sherada

:'( feeling really crappy today, havent eaten anything since lunch yesterday but that caused all kinds of stomach pain and nausea ... was only able to throw up half of it and spent the rest of the day in bed passing out around 9pm after taking my humira inj.  Today I am sad and feel alone ... wish i knew someone with crohns that i could talk to or confide in... feels like no one understands i got the weird eyes from some girl in the cafeteria as i strained my soup and threw the rest of the can away and microwaved the broth at work .  Just trying to get through the day without being incapacitated by pain ... if avoiding food is what i need to do then so be it


----------



## duh panda

ronroush7 said:


> My doctor wants me to get blood work and do a calprotectin test.  What is that?


Pretty sure calprotectin's a test ran from a stool sample that checks inflammation. I've seen it ran along side other stool tests when checking stool samples for potential causes of blood, check inflammation levels and rule out or verify bacterial causes of symptoms.


----------



## ronroush7

Thanks duh panda.


----------



## Om3ga1

On 6MP and Balsalazide since Wed. Feeling better than I have in the last couple of months.


----------



## duh panda

Not a good morning, hopefully just a rough start to the day that'll ease up as the afternoon gets on.


----------



## ronroush7

Better than two days ago.


----------



## Om3ga1

ronroush7 said:


> Better than two days ago.


Good a place to start as any. Sometimes it's hard to keep your head up, but what else can you do.


----------



## ronroush7

Om3ga1 said:


> Good a place to start as any. Sometimes it's hard to keep your head up, but what else can you do.


I have had done bad days recently and the doctor wants some blood work and calprotectin.


----------



## Om3ga1

ronroush7 said:


> I have had done bad days recently and the doctor wants some blood work and calprotectin.


They're always wanting blood. Worse than lawyers. :ylol2:


----------



## ronroush7

I wish there was one test and we could be seen right away.


----------



## Om3ga1

Now that I've started  6MP they want blood every week.


----------



## ronroush7

I hate this disease.  I have spent most of the last three hours, most of the time I have been awake in the bathroom.  Earlier this year, they told me I was in remission.  Not anymore.


----------



## Om3ga1

Been fighting this fight over 10 years. All I can say is don't quit. :ghug:


----------



## ronroush7

Long time for me too.


----------



## Om3ga1

Been watching the SSI trials up in Canada. This just might be exactly what we're all looking for.


----------



## Sherada

I've lost 6lbs in 3weeks ... which is not too bad hopefully i can gain most back with rehydration... my stomach has decided to tolerate some food, i hope this continues.  Small Bowel series tomorrow morning... hope they don't find anything major. for now i'm just glad to be feeling a bit better no major pain today!


----------



## ronroush7

I have gone to the toilet eleven times so far.  They took blood work, urine and feces samples from me today.


----------



## fuzzy butterfly

Best wishes to all, hope things get better soon ..x
 Im feeling ok in general, but my joints are blooming painful at the mo, a lot of lifting n shifting at work just now, so no wonder really !


----------



## ronroush7

Thanks, mandyk.


----------



## duh panda

Woke up with some of the most nauseating pain in months. More like the moment I tried moving after waking up it hit. So glad next remicade infusion is next week and for the freedom to stay home curled up with a heating pad reading!


----------



## Om3ga1

Starting to see a gradual improvement. Doc said it may take a month to know exactly what this  6MP is gonna do to me but so far so good.


----------



## fuzzy butterfly

Hi duh panda, sorry your having a rough time, hope the pain has eased now for you . hope the infusion gets you back on track soon, hang in there..
Hi om3a1, glad the 6mp seems to be helping you now , thats great news, long may that continue...
 best wishes to you both, and to everyone else , take care x


----------



## ronroush7

I go back and forth on how I feel.


----------



## fuzzy butterfly

Sending you best wishes ronroush7, take care my friend...


----------



## ronroush7

You too.


----------



## fuzzy butterfly

Thanks..


----------



## ronroush7

Welcome.


----------



## Om3ga1

Chicken with baked beans spiced with just a touch of red chile for lunch today. At least that's that plan.


----------



## ronroush7

Bloated.


----------



## Om3ga1

ronroush7 said:


> Bloated.


Try a little caffeine to move things along.


----------



## KimboHiggs

Tired.
So so sooo tired :'(
I'm 23 and thats also how many hours a day I would love to sleep!
Since my Endoscopy 2 weeks ago I have had extreme extreme fatigue  
I have my MRI scan on the 13th of this month too I received the letter today!
Hope everyone else is well xx


----------



## ronroush7

Om3ga1 said:


> Try a little caffeine to move things along.


Thanks.  Caffeine aggravates the Crohn's.


----------



## ronroush7

KimboHiggs said:


> Tired.
> So so sooo tired :'(
> I'm 23 and thats also how many hours a day I would love to sleep!
> Since my Endoscopy 2 weeks ago I have had extreme extreme fatigue
> I have my MRI scan on the 13th of this month too I received the letter today!
> Hope everyone else is well xx


Sometimes ,I would like to sleep that much too.


----------



## Om3ga1

KimboHiggs said:


> Tired.
> So so sooo tired :'(
> I'm 23 and thats also how many hours a day I would love to sleep!
> Since my Endoscopy 2 weeks ago I have had extreme extreme fatigue
> I have my MRI scan on the 13th of this month too I received the letter today!
> Hope everyone else is well xx


Has anyone checked your iron?


----------



## KimboHiggs

No I went to my GP Tuesday and he told me to try not nap in the day... that was all...


----------



## fuzzy butterfly

Hi, im on iron ,b12 n vit c n still tired ..hey ho ..
best wishes to all, x


----------



## ronroush7

mandyk said:


> Hi, im on iron ,b12 n vit c n still tired ..hey ho ..
> best wishes to all, x


Me too.


----------



## Om3ga1

mandyk said:


> Hi, im on iron ,b12 n vit c n still tired ..hey ho ..
> best wishes to all, x


What about Vit D?


----------



## fuzzy butterfly

Hi no not on that,  but do  take a multi vit tablet each day too....


----------



## duh panda

Legs feel like murder. Guts feel like murder. Sooo ready for infusion on wednesday. Certainly helps keep the need for a functioning medical treatment plan a priority. In other non crohns related news (cuz we're all so much more then medical jargon), it all makes a great motivator for sitting down and taking care of splitting up a hundred paged and growing manuscript so it's easier to work with.


----------



## ronroush7

duh panda said:


> Legs feel like murder. Guts feel like murder. Sooo ready for infusion on wednesday. Certainly helps keep the need for a functioning medical treatment plan a priority. In other non crohns related news (cuz we're all so much more then medical jargon), it all makes a great motivator for sitting down and taking care of splitting up a hundred paged and growing manuscript so it's easier to work with.


I just received a Stelara shot recently and I am wondering if it is becoming ineffective.


----------



## duh panda

ronroush7 said:


> I just received a Stelara shot recently and I am wondering if it is becoming ineffective.


I always second guess myself wanting to believe declines in health/ wellness isn't because meds aren't working as optimally as they could be or have been. It bothers me to think about the dependency on treatment - without it at all, screwed, with an med that declines in effectiveness - just screwed at a slower pace. Figure it's just best not to walk down that line of thought :voodoo:

I read somewhere recently that biologics (on average) are only effective for 3-5 years. Currently 3rd time starting/ switching to Remicade and doubting how long it'll work due to that element, can up dose frequency and ml amount but that's a discussion to have with the doc. once we find a bit more stability. I've been curious about Stelera since it seems like there's an increasing number of crohn's patients with moderate to severely active disease giving it a shot. Have you been on it for some time? What's making you think it's becoming ineffective instead of possibly not being on the best dose/ frequency if it has that flexibility?


----------



## ronroush7

duh panda said:


> I always second guess myself wanting to believe declines in health/ wellness isn't because meds aren't working as optimally as they could be or have been. It bothers me to think about the dependency on treatment - without it at all, screwed, with an med that declines in effectiveness - just screwed at a slower pace. Figure it's just best not to walk down that line of thought :voodoo:
> 
> I read somewhere recently that biologics (on average) are only effective for 3-5 years. Currently 3rd time starting/ switching to Remicade and doubting how long it'll work due to that element, can up dose frequency and ml amount but that's a discussion to have with the doc. once we find a bit more stability. I've been curious about Stelera since it seems like there's an increasing number of crohn's patients with moderate to severely active disease giving it a shot. Have you been on it for some time? What's making you think it's becoming ineffective instead of possibly not being on the best dose/ frequency if it has that flexibility?


They might just have to adjust the dose.  I was on Cimzia for a while.  It failed after a while.  I was on Remicade but took myself off.  My doctor put me back on after my resection.  My body developed a rare allergic reaction.  I had a lesion in my scalp which did not respond to antibiotic.  I had to have it removed surgically.  I have been on Stelara probably two or three years.


----------



## ronroush7

duh panda said:


> I always second guess myself wanting to believe declines in health/ wellness isn't because meds aren't working as optimally as they could be or have been. It bothers me to think about the dependency on treatment - without it at all, screwed, with an med that declines in effectiveness - just screwed at a slower pace. Figure it's just best not to walk down that line of thought :voodoo:
> 
> I read somewhere recently that biologics (on average) are only effective for 3-5 years. Currently 3rd time starting/ switching to Remicade and doubting how long it'll work due to that element, can up dose frequency and ml amount but that's a discussion to have with the doc. once we find a bit more stability. I've been curious about Stelera since it seems like there's an increasing number of crohn's patients with moderate to severely active disease giving it a shot. Have you been on it for some time? What's making you think it's becoming ineffective instead of possibly not being on the best dose/ frequency if it has that flexibility?


To answer your question, I seem to be going to the bathroom more and that is what makes me think it is becoming ineffective along with my psorasis seems to be more active.


----------



## ronroush7

Can ketchup or greasy chips cause a stomach cramp?


----------



## duh panda

ronroush7 said:


> Can ketchup or greasy chips cause a stomach cramp?


Hope things improve for you and you and your team can figure out how to get everything back in a happier spot!

Chips are brutal for me - even when doing well, chips are a sure way to spending a miserable 24 to 48 hours after - usually end up with bad cramping or just a lot of GI gas/ bloating followed by cramping. Unpleasant either way. Greasier they are the quicker the negative effects and longer it seems to last, could be due to higher fat content since gut will struggle to break down and absorb fats when there's heavy inflammation. Baked chips tend to be okay, but what's the point of eating a baked chip? Blehh.

High sugars/ acidity of ketchup I find irritating when things are aggravated, tolerable otherwise.


----------



## ronroush7

Thanks


----------



## ak23

I'm having a really rough few days and contemplating going to the ER. I've had miserable cramping, constant runs, blood in my stool, etc. I always have a hard time deciding if I should tough it out or go to the ER, so I don't know what to do. For pain and anxiety, I'm on Tramadol and Klonopin but the pain is so bad that it isn't doing anything. Not sure what to do.


----------



## ronroush7

Had pressure earlier , better now.


----------



## fuzzy butterfly

Hi  ak23, please go to the ER or you docs, always best to get help if you can. best wishes..


----------



## ronroush7

I was walking our dog.  I felt the need to go to the bathroom.  On the way home, I started having pain in my abdomen.  Can this be caused by spasming or a flare?


----------



## fuzzy butterfly

ronroush7 said:


> I was walking our dog.  I felt the need to go to the bathroom.  On the way home, I started having pain in my abdomen.  Can this be caused by spasming or a flare?


Hi ronroush7, the pain could be what you said but may also be wind , ( that one gets me at times n i wonder if im starting up again) has it gone yet ?, if not give your doc a ring and get his advice, just for peace of mind mate , best wishes ...


----------



## ronroush7

Thanks.  Most of the pain is gone but I am in the bathroom again.


----------



## fuzzy butterfly

Glad the pain has eased , oh how  we suffer in bathrooms, there has been times when i could have done with one on wheels to drag round with me.. maybe we should invent one !! we could make a fortune ,  tho dont think i could charge my fellow suffers .. take care ron best wishes .


----------



## Lisa

Blech!!!!!

Started with a head/sinus cold a couple days ago, night before last I ran a low grade fever (99+) and stayed home from work yesterday.....was better last night with the help of some night time medicine lol....felt blah today at work but no fever....still sniffling and coughing and going to bed soon......


----------



## ak23

mandyk said:


> Hi  ak23, please go to the ER or you docs, always best to get help if you can. best wishes..


Thanks, I did. I got steroids and some medicine to relieve my pain. They also did an xray and now I'm following up with my GI


----------



## fuzzy butterfly

ak23 said:


> Thanks, I did. I got steroids and some medicine to relieve my pain. They also did an xray and now I'm following up with my GI


Hi i am glad you saw your doc n that you will get some relief now, hopefully they will get you on the right track n meds to help keep you well, best wishes n take care now ...


----------



## ronroush7

I keep needing to go to the bathroom.  I am not sure what it was but once today I saw something mixed in with the stool.

 2


----------



## ak23

Quick question (and sorry if this is TMI): I've been going to the bathroom A LOT, to the point that I'm having a lot of pain down there. I use the most expensive toilet paper and I've tried things like Vasaline and - when the pain is at its worst - some of the pain medicine pills from my recent ER visit. The pain medicine pills help the most, but even still it doesn't entirely get rid of the pain and it hurts to walk or sit. Any tips to alleviate this rectal pain from going to the bathroom and wiping so much?


----------



## ronroush7

I feel like I should know the answer.


----------



## duh panda

ak23 said:


> Quick question (and sorry if this is TMI): I've been going to the bathroom A LOT, to the point that I'm having a lot of pain down there. I use the most expensive toilet paper and I've tried things like Vasaline and - when the pain is at its worst - some of the pain medicine pills from my recent ER visit. The pain medicine pills help the most, but even still it doesn't entirely get rid of the pain and it hurts to walk or sit. Any tips to alleviate this rectal pain from going to the bathroom and wiping so much?


Baby wipes - seriously, the best TP in the world can't compare to that level of soothing even with fissures. Made life so much better after switching to wipes for my crohn's needs. I like Bert's Bee's since I find they've been the least irritating for my very sensitive skin being chlorine free and that the vitamin E/ aloe is more soothing when dealing with rectal pain and spasming then alternatives not containing.


----------



## fuzzy butterfly

ak23 said:


> Quick question (and sorry if this is TMI): I've been going to the bathroom A LOT, to the point that I'm having a lot of pain down there. I use the most expensive toilet paper and I've tried things like Vasaline and - when the pain is at its worst - some of the pain medicine pills from my recent ER visit. The pain medicine pills help the most, but even still it doesn't entirely get rid of the pain and it hurts to walk or sit. Any tips to alleviate this rectal pain from going to the bathroom and wiping so much?


Hi i used the moist toilet wipes with aloe vera in them,(Asda/Walmart)own brand, also sudocrem, and aqueous cream from local chemist, and i also had an hydrocortisone cream from my doc, which i used on occasion. wipe the worst away with tp n then clean with moist wipes, after you used the wipe dont rub dry just pat it to take the dampness off or you will wipe of the aloe that is going to help, but do so as gently as you  can to avoid as irritating the area as much. you could use baby wipes too but try to get them with the aloe vera as it does soothe and heal the skin . good luck n best wishes ..


----------



## ak23

Thank you!


----------



## fuzzy butterfly

No problem n good luck. Hope things improve quickly for you ..btw get the flushable ones makes life easier if you can wipe n flush instead of using a bin ..


----------



## ronroush7

Amen


----------



## ronroush7

Bad night last night.


----------



## fuzzy butterfly

Aw ron sorry to hear that mate. You take care get well hugs coming your way x


----------



## ronroush7

mandyk said:


> Aw ron sorry to hear that mate. You take care get well hugs coming your way x


Same to you.


----------



## fuzzy butterfly

Thanks Ron. Hope u have good night tonight.


----------



## ronroush7

feeling bloated,


----------



## duh panda

So glad the last 2 years finally seem to be settling down. It's like I can poop normal again, at least for a bit after infusions. Gotta love those periods of time where things are a bit more manageable. Now, only exhaustion/ fatigue really takes me completely out of my days. Start the day with so many goals and end them all the same - picking my self up from wherever I fall asleep - at the dinner table, at the computer, outside on the porch, on the couch watching tv. I feel like somehow the waking up randomly in odd places at odd hours after never consciously deciding to fall asleep should be a children's book.


----------



## fuzzy butterfly

Hi duh panda glad things are improving for you, fatigue is it's own pain in the arse ... Maybe you should write that book n make some cash off of it.That will teach the fatigue a lesson lol. Take care my friend ..


----------



## ronroush7

Bloating and pressure.


----------



## fuzzy butterfly

Aw Ron mate hugs to you ...


----------



## ronroush7

Thanks, mandyk.  Thanks.


----------



## fuzzy butterfly

Your Welcome my friend take care ..


----------



## ronroush7

You too.


----------



## fuzzy butterfly

Thanks Ron x


----------



## ronroush7

Welcome


----------



## duh panda

Thanks MandyK - Currently working on a couple longer manuscripts, never know though maybe one day I'll tailor my focus toward children's stories  Hope you're having a great Tuesday.


----------



## Lisa

Well, I felt better over the weekend, wrote up this morning with a mother of a headache and sore throat.....made it through most of the day at work, then my temp started to slowly climb and at last check was 100.7- so it is still going up.  

Ugh.....i really hate being sick, may need to call the doctor tomorrow, plus go find my blood pressure medication as that is all wonky too.


----------



## ronroush7

Go see your doctor and let us know how you are,Lisa.


----------



## teeny5

Tired, tired, and more tired. Work is kicking my butt this week :thumbdown:


----------



## ronroush7

Sorry


----------



## fuzzy butterfly

Your welcome duh panda. Ha well i didnt know you wrote!!  take care ..
Lisa as Ronroush said ring docs, hope you feel better soon.. 
Hugs to all x


----------



## Lisa

Went to the doc yesterday morning, called at 730am and was seen by 9.....

Nurse came in to do a quick strep test and made a comment that a lot of people had been in lately with negative results....:shifty-t::shifty-t: .....PA came in to see me and his first reaction when he looked at my throat was "wow"! Lol.....

No surprise, test was positive for strep.....I saw the nurse before I left and she said it was a very quick positive too! 

On amoxicillin for ten days.....joy.....hope it doesn't mess with me too badly!


----------



## ronroush7

I hope you are better soon, Lisa.


----------



## ronroush7

I am retired because of the Crohn's.  It had me up after five this morning.  Then again three hours later.  Then after nine.  I feel like going back to bed regardless of the time.


----------



## fuzzy butterfly

Lisa get well soon hun x 
Ron if you wana go to bed love you go ,sod the time of day get the rest if you need it. X
 Im off to bed up at half 5 this morning worked nine hours today. Bloody knackered lol . Love to all x


----------



## ronroush7

I have been to the bathroom a half dozen times and I am not feeling well.

 2


----------



## penhow45

teeny5 said:


> Tired, tired, and more tired. Work is kicking my butt this week :thumbdown:


i wish i could work...its been a week and these setons are kicking my butt. the pain is incredible ans i cant weat granny panties cuz they cut into one of the holes. so depressed...


----------



## ronroush7

penhow45 said:


> i wish i could work...its been a week and these setons are kicking my butt. the pain is incredible ans i cant weat granny panties cuz they cut into one of the holes. so depressed...


Hang in there.


----------



## fuzzy butterfly

Feeling like so so tired i need a holiday me thinks, but cant afford one  Oh well il carry on i guess . Hugs n love to all, you all take care now x


----------



## fuzzy butterfly

Feeling like so so tired i need a holiday me thinks, but cant afford one  Oh well il carry on i guess . Hugs n love to all, you all take care now x


----------



## ronroush7

Put on a happy face.


----------



## duh panda

Looking like a pretty rough weekend so far on here. Hope everyone can find a bit of comfort and something worth smiling for today 

Gut's been okay - not horrible, not ideal, just okay. I'll take okay. I need to seriously run some errands today, should be a long/ tiring but good day. Always love going grocery shopping since it means more options in the kitchen. Was feeling a bit more ambitious this morning then usual and tried a new thing with my hair. It turned out awesome (which is saying something since it's in an awkward spot working to grow out a pixie).


----------



## ronroush7

As I was was coming out of church, someone told me my stomach looked swollen.'

 2


----------



## penhow45

ronroush7 said:


> Hang in there.


thanks ronroush ...i can only lay on my back today due to the volcanos in my butt!!! thankful for my kids trying to help their fiercly independant mom...hope your day is going well


----------



## penhow45

ronroush7 said:


> As I was was coming out of church, someone told me my stomach looked swollen.'
> 
> 2


i wouldnt worry about your looks...lol!! you made it to church...good for you!!!! how do you feel?


----------



## ronroush7

I was bloated earlier.


----------



## penhow45

ronroush7 said:


> I was bloated earlier.


i hope its nothing serious. maybe a nap is in order!


----------



## lilac

flaring again - had 16th hospital admission last month and being sent to a professor for assesment because my GI seems a bit stuck with what to do with me. Can't eat and feel stuck in groundhog day


----------



## penhow45

lilac said:


> flaring again - had 16th hospital admission last month and being sent to a professor for assesment because my GI seems a bit stuck with what to do with me. Can't eat and feel stuck in groundhog day


so sorry lilac  these gastro issues are physically and mentally taxing!!! just know you are not alone....we are all here for you. hang in there...prayers on the way!


----------



## fuzzy butterfly

Ha looks like im so tired i cant count.. Posted my last msg twice doh!!!
  Im off to bed now but wanted to wish you all well b4 i sleep. You will all be in the prayers i say very shortly. God bless you all x


----------



## ronroush7

Thanks.


----------



## Lisa

I think the amoxicillin is kicking my butt.....throat feels better, but have a constant sinus headache/pressure that Tylenol doesn't touch.....and I'm out of God passion meds.....and I have a pretty much non productive cough that makes me want to cough up a lung.......Oh, and my fave is closed too, and I haven't even been drinking!!!!!


----------



## ronroush7

Lisa said:


> I think the amoxicillin is kicking my butt.....throat feels better, but have a constant sinus headache/pressure that Tylenol doesn't touch.....and I'm out of God passion meds.....and I have a pretty much non productive cough that makes me want to cough up a lung.......Oh, and my fave is closed too, and I haven't even been drinking!!!!!


Probiotics might help while you are on the amoxocillin.  Hope you feel better.


----------



## MoCo

I hurt, that's how I am feeling. I imagine most everyone on here hurts too. How do people deal with it? I am doubled over, don't know what's "normal" any more or who to see about what. This whole process has been so frustrating and isolating. I am tired all the time, so can't deal well with anything. Then I feel bad because there are so many much, much worse than I am and I feel whiny, which I don't like. Sigh...I just don't like me or my body, period!

There, got that off my chest, haha. 

Hope everyone else is having a pleasant evening. Cheers to all.


----------



## penhow45

MoCo said:


> I hurt, that's how I am feeling. I imagine most everyone on here hurts too. How do people deal with it? I am doubled over, don't know what's "normal" any more or who to see about what. This whole process has been so frustrating and isolating. I am tired all the time, so can't deal well with anything. Then I feel bad because there are so many much, much worse than I am and I feel whiny, which I don't like. Sigh...I just don't like me or my body, period!
> 
> There, got that off my chest, haha.
> 
> Hope everyone else is having a pleasant evening. Cheers to all.


its an too familiar feeling....


----------



## ronroush7

Hang in there,MoCo


----------



## ak23

I'm having a really rough day. Cramping and I'm back to using the restroom about 20 times per day. I don't get it. I went to the ER last week and was put on Prednisone, but now it seems like my body is back to acting up. I've been taking Tramadol, which usually helps the pain and to slow me down, but it's not helping. I'm calling my doctor tomorrow because I feel like I'm back at square one with the cramps and bathroom issues. Even sitting has become excruciating. I just don't know what to do. I just took my latest Humira dose and I'm hoping it helps, but we'll see.


----------



## ronroush7

Hope you feel better soon.


----------



## fuzzy butterfly

ak23 , sorry your suffering love, it is a horrid thing at times this disease, i want to kill it so none of us have to suffer it any more .. ye please go back to your docs n try to get more help so that you feel better .. hugs n best wishes from me to you. Take care n take it as easy as you can ..


----------



## crs

Feeling good today. *hugs to all of you*


----------



## fuzzy butterfly

crs said:


> Feeling good today. *hugs to all of you*


glad you feel good today long may it continue,  hugs to you too :rosette1:


----------



## ak23

Hope everyone else is doing good and enjoying it! Don't take today for granted! Have a wonderful one. Hopefully I'll be joining you guys feeling better in no time.


----------



## ak23

mandyk said:


> ak23 , sorry your suffering love, it is a horrid thing at times this disease, i want to kill it so none of us have to suffer it any more .. ye please go back to your docs n try to get more help so that you feel better .. hugs n best wishes from me to you. Take care n take it as easy as you can ..


Thanks, I appreciate it! Let's hope this is just a short little flare and then I'm back to normal! Have a great day.


----------



## fuzzy butterfly

ak 23 im with you on that heres hoping, n thanks to you too...


----------



## penhow45

mandyk said:


> ak 23 im with you on that heres hoping, n thanks to you too...


im here with you all!!!! CHEERS to making today the best day we can!!!!!


----------



## ronroush7

penhow45 said:


> im here with you all!!!! CHEERS to making today the best day we can!!!!!


Thanks.


----------



## ronroush7

These days,  I either feel bloated or go to the bathroom a lot and I am afraid my gi is going to dismiss it.

 2


----------



## fuzzy butterfly

Hey Ron dont let him/her dismiss it,put your foot down with a firm hand n stand your ground till you get a resolution on it mate. I dont let docs dismiss me on anything any more. I learnt that the hard hard way. Good luck n dont take any fobbing off !!


----------



## ronroush7

Thanks, mandyk.Good health.


----------



## fuzzy butterfly

Back at you Ron, btw u can drop the k bit , im cheeky enough to have dropped roush lol


----------



## Christi

Hi i hope all of you feel better soon


----------



## fuzzy butterfly

Hi Christi thanks you too if your not to well at the mo!!


----------



## ronroush7

Hope everyone feels better.


----------



## ronroush7

mandyk said:


> Back at you Ron, btw u can drop the k bit , im cheeky enough to have dropped roush lol


Okay,Mandy.


----------



## fuzzy butterfly

hope u have a good day Ron, im on my way to work. Glad i have data on my fone,it comes in handy when traveling an hour on the bus lol . It wiles away the time  ..


----------



## ronroush7

Have a blessed day, Mandy.


----------



## penhow45

ronroush7 said:


> Have a blessed day, Mandy.


happy day to you ron!!!! i also wonder why most GIs are dismissive of alot of things! when i was first diagnosed almost 30 years ago, i asked my doc what i could expect in years to come and his exact words were "you dont want to know"! i suppose the plethora of ways this disease can consume us leaves many scratching their heads. take "bloating" for instance....it could mean so many things...where do you start? keep after the doctor! you are the patient and your healthcare team should go to the ends of the earth to help you!!!!...sigh...if it were only a perfect world....carry on friend...you are in my prayers.


----------



## ronroush7

penhow45 said:


> happy day to you ron!!!! i also wonder why most GIs are dismissive of alot of things! when i was first diagnosed almost 30 years ago, i asked my doc what i could expect in years to come and his exact words were "you dont want to know"! i suppose the plethora of ways this disease can consume us leaves many scratching their heads. take "bloating" for instance....it could mean so many things...where do you start? keep after the doctor! you are the patient and your healthcare team should go to the ends of the earth to help you!!!!...sigh...if it were only a perfect world....carry on friend...you are in my prayers.


Thanks.  I just got a call and they said my fecal calprotectin was normal but it seems like my urine test was lost.  I go back and forth between bloating or going to the bathroom a lot with occasional bleeding.  Forgive me if I am repeating myself.  Can these symptoms occur from your intestines spasming?  Sending prayers your way.


----------



## fuzzy butterfly

Thanks Ron. Today was good got a lot done... 
You take care love. ..


----------



## fuzzy butterfly

Hi penhow, so agree the stuff this thing can cause is the stuff of nightmares. We can but smile n live in hope  . Take care now ..


----------



## penhow45

mandyk said:


> Hi penhow, so agree the stuff this thing can cause is the stuff of nightmares. We can but smile n live in hope  . Take care now ..


HOPE....and faith...thats what i live on! just gotta keep on keeping on!


----------



## ronroush7

penhow45 said:


> HOPE....and faith...thats what i live on! just gotta keep on keeping on!


Me too.


----------



## penhow45

ronroush7 said:


> Thanks.  I just got a call and they said my fecal calprotectin was normal but it seems like my urine test was lost.  I go back and forth between bloating or going to the bathroom a lot with occasional bleeding.  Forgive me if I am repeating myself.  Can these symptoms occur from your intestines spasming?  Sending prayers your way.


that sounds like a reasonable conclusion...repeat yourself all you want...happy to listen! obviously, something isnt right...dont give up. its better to find out whats going on rather than churning it around in your head...happy thoughts!!!


----------



## ronroush7

Thanks.


----------



## -Rita-

Today a lot of things happened.

On the good side: I'm almost done with the first chapter of my story! This is the first step on the road to my dream of becoming a writer! I also spent the day with my father (my parents are divorced) and it was really nice to see him. I ate Italian food for dinner, yum! Oh, and my godson visited me today! We played a lot together and I was able to hold him for a long time without getting tired.

On the bad side: Today is the 3rd anniversary of my grandpa's death (R.I.P paps  ). My boyfriend had trouble at home again and I got really sad for him. There was also a fight in my class. But the worst of all - *blood appeared on the stool again.*


----------



## ronroush7

Sorry about the anniversary and the death.


----------



## duh panda

-Rita- said:


> Today a lot of things happened.
> 
> On the good side: I'm almost done with the first chapter of my story! This is the first step on the road to my dream of becoming a writer! I also spent the day with my father (my parents are divorced) and it was really nice to see him. I ate Italian food for dinner, yum! Oh, and my godson visited me today! We played a lot together and I was able to hold him for a long time without getting tired.
> 
> On the bad side: Today is the 3rd anniversary of my grandpa's death (R.I.P paps  ). My boyfriend had trouble at home again and I got really sad for him. There was also a fight in my class. But the worst of all - *blood appeared on the stool again.*


What kind of story are you working on? I'm also taking the time I have right now since I'm unemployed to work on writing  about 100k words down, another 150k to go. Wishing you all the best. Reading your post is some good motivation to sit down and write today (I have been procrastinating all morning/ afternoon so far for no reason good or bad). 

Seeing blood in my stool is hands down the easiest/ quickest way to throw me off during any given day. Hope it clears up quickly.


----------



## -Rita-

duh panda said:


> What kind of story are you working on? I'm also taking the time I have right now since I'm unemployed to work on writing  about 100k words down, another 150k to go. Wishing you all the best. Reading your post is some good motivation to sit down and write today (I have been procrastinating all morning/ afternoon so far for no reason good or bad).
> 
> Seeing blood in my stool is hands down the easiest/ quickest way to throw me off during any given day. Hope it clears up quickly.


Wow, amazing to see another writer here! I'm only 2k words down at the moment because I procrastinate a lot when I'm not feeling well hahah. 
My story revolves around teenagers and youth. It's the story of various teenagers that suffer from various problems related to school, life and family. Some of them are bullying victims, are sick, discriminated, put aside and their goal is to find the "right" way out of their problems. There are 8 characters/ stories being told in total. They will eventually meet and find a way out altogether. By the power of friendship and love. :ylol::ylol::ylol:
It's a bit cheesy but I'm enjoying writing it. Been working on it for 2 years and finally got the courage to pick it back up and finish it. :dusty:


----------



## penhow45

-Rita- said:


> Today a lot of things happened.
> 
> On the good side: I'm almost done with the first chapter of my story! This is the first step on the road to my dream of becoming a writer! I also spent the day with my father (my parents are divorced) and it was really nice to see him. I ate Italian food for dinner, yum! Oh, and my godson visited me today! We played a lot together and I was able to hold him for a long time without getting tired.
> 
> On the bad side: Today is the 3rd anniversary of my grandpa's death (R.I.P paps  ). My boyfriend had trouble at home again and I got really sad for him. There was also a fight in my class. But the worst of all - *blood appeared on the stool again.*


rita....thank you for sharing...the good and bad. it seems you are staying positive, but the blood in your stool is very telling....STRESS...its the one thing that does us all in. keep writing, have a good cry..let it all out. you deserve to be happy and healthy. God bless!


----------



## -Rita-

penhow45 said:


> rita....thank you for sharing...the good and bad. it seems you are staying positive, but the blood in your stool is very telling....STRESS...its the one thing that does us all in. keep writing, have a good cry..let it all out. you deserve to be happy and healthy. God bless!


Thank you for your words. I've indeed been extremely stressed this past week since I was just diagnosed with Crohn's, my grades for college are too low and I have exams next week. The blood in the stool was really scary! It was just a minor thing but it was enough to scare my whole family. Hopefully it's just a scare and not a flare. 

Keep up the good spirit & God bless! :thumright:


----------



## duh panda

-Rita- said:


> Wow, amazing to see another writer here! I'm only 2k words down at the moment because I procrastinate a lot when I'm not feeling well hahah.
> My story revolves around teenagers and youth. It's the story of various teenagers that suffer from various problems related to school, life and family. Some of them are bullying victims, are sick, discriminated, put aside and their goal is to find the "right" way out of their problems. There are 8 characters/ stories being told in total. They will eventually meet and find a way out altogether. By the power of friendship and love. :ylol::ylol::ylol:
> It's a bit cheesy but I'm enjoying writing it. Been working on it for 2 years and finally got the courage to pick it back up and finish it. :dusty:


Now that sounds like a story I would read! Mine is fantasy fiction, standard good vs. evil dichotomy. Hardest part is pulling the world/ characters/ plot from my head where it's been developing for over a decade and actually putting it onto the page. When I'm not feeling well even if I want to write often my attention span just can't keep up with the demands. Corticosteroids always slow my progress. 

I hope you stick with it and one of these days or years(?) I get a chance to read it


----------



## -Rita-

duh panda said:


> Now that sounds like a story I would read! Mine is fantasy fiction, standard good vs. evil dichotomy. Hardest part is pulling the world/ characters/ plot from my head where it's been developing for over a decade and actually putting it onto the page. When I'm not feeling well even if I want to write often my attention span just can't keep up with the demands. Corticosteroids always slow my progress.
> 
> I hope you stick with it and one of these days or years(?) I get a chance to read it


Many teenagers suffer from these problems, especially my generation. Since many teenagers like reading, I had the idea to write a "self-help" guide showing them real life problems and how to escape them without doing crazy things like self-harm, bully others and even try to kill themselves. I wanted to show them that there are other ways, there is someone ready to help you. 
My family immediately supported me and my friends said it was a great idea and remind me to write a sentence every day. I even showed the draft to my therapist while I was at the hospital and she praised me so much. 

Although I've never self-harmed myself or went further from that, I've been a victim of bullying since 7th grade and am recovering from a 3 years old depression, I know how it feels and what you experience. Even thought I'm still bullied, I now have the courage to fight back and call out other bullies when they do something wrong, so I decided to create a story where this short, quiet girl protects other kids from bullies and bad people even thought she has her own problems as well and is trying to solve them.


----------



## duh panda

-Rita- said:


> I decided to create a story where this short, quiet girl protects other kids from bullies and bad people even thought she has her own problems as well and is trying to solve them.


That, I think, is one of the best sides of humanity - our ability to support and build up one another despite our own struggles and challenges.


----------



## penhow45

gonna try to clean a house today. just waking up, knowing i have to be somewhere at a certain time has sent me to the bathroom 3 times. BREATHE penny...BREATHE!!!!!


----------



## duh panda

Finally feels like things have settled with new location/ household and starting to see more initiative in my better half and our roommate helping to get things done around the house or take over cooking meals. I hate transition periods so it's a relief to having everything settling back down and falling into place. Woke up with a fair bit of pain, but I'm holding an almost normal BMI weight for the first time since 2010, I'm very excited to keep pushing it some with exercise in rehabbing an acute meniscus tear and exceed the goals I have set for the next 3 months on that front.


----------



## smt

-Rita- said:


> Many teenagers suffer from these problems, especially my generation. Since many teenagers like reading, I had the idea to write a "self-help" guide showing them real life problems and how to escape them without doing crazy things like self-harm, bully others and even try to kill themselves. I wanted to show them that there are other ways, there is someone ready to help you.
> My family immediately supported me and my friends said it was a great idea and remind me to write a sentence every day. I even showed the draft to my therapist while I was at the hospital and she praised me so much.
> 
> Although I've never self-harmed myself or went further from that, I've been a victim of bullying since 7th grade and am recovering from a 3 years old depression, I know how it feels and what you experience. Even thought I'm still bullied, I now have the courage to fight back and call out other bullies when they do something wrong, so I decided to create a story where this short, quiet girl protects other kids from bullies and bad people even thought she has her own problems as well and is trying to solve them.


in real life too, never ever give in to bullying. I was bullied by another doctoral candidate some 3 years back, and I have given it back to him. My grades are very good as opposed to his poor ones and I have reminded him every time since, and now he fears me.  He has recently suffered from a heart attack and you never know when justice would come knocking.  Fight for your rights and in the process if harshness is required, use that please.


----------



## -Rita-

Today was an eventful day.

On the good side: I've finished the first chapter of my story! My mother found a chocolate made with lactose free milk which was awesome and tastes really good! My aunt and my uncle came to visit me today as well. My English test went really well, I hope I can get an A! I'm 1kg fatter ahahah, yay, I'm tired of being called anoretic when it's not my fault! I was allowed to start searching for a summer job by my parents, I either want to work in a cafe or at the beach helping the tourists.  

On the bad side: I've been feeling a lot of pain since this morning on either side of my abdomen and on my hip and back. My vision gets blurry and I even had a short panic attack. I hope this is not a flare since I was just recently diagnosed and don't want to go back to the hospital. I did commit some wrong doings and ate fast food, which can probably be the cause of this pain and my mother already punished me because of it. I guess I caught a cold - the doctor said it would be normal because I'm really weak now. I hate colds uuugh....

On another note: I miss doing exercise... The weather got colder and my winter clothes aren't cute hahah. My birthday is next week - but I have the week filled with tests, ugh, I guess I should go study but again, I'm not feeling well to do it. My sibling came to me and talked with me about the time I was hospitalized and how he was dealing with the situation of me being sick. He says it's being hard for him but he'll do his best to help me be healthy and not go back to "the hell hole" or he'll cry and miss me to death (cute!).


----------



## -Rita-

smt said:


> in real life too, never ever give in to bullying. I was bullied by another doctoral candidate some 3 years back, and I have given it back to him. My grades are very good as opposed to his poor ones and I have reminded him every time since, and now he fears me.  He has recently suffered from a heart attack and you never know when justice would come knocking.  Fight for your rights and in the process if harshness is required, use that please.


I really hate bullying and I hate people who bully others. People still bully me in my class and bully my friends but this time I don't stand back and I actually reply to them. They call me names and annoy me on purpose. I shouldn't get mad because it may cause my medicine not to work correctly I try to avoid them but they keep buzzing around and annoying me on purpose to get a reaction from me. Yesterday I had to raise my voice because of them even thought the problem wasn't with me and felt sick. I know this will go on for a long time but I'm not afraid of them and if there's need to cross slap someone, I will gladly do it.


----------



## fuzzy butterfly

Aw bless your bro, yep it is not just hard on us. This affects our family n friends too..
Omg i know how that feels with folk thinking that you have some kinda eating disorder. Even tho iv been dxd for 3 n a half yrs , i still get u need to eat more. Argh!!! It does not matter what i eat i can seem to gain any more weight. At 8 stone ish for ages, shiuld be about 9 1/2 to 10 stone but hey ho im alive so deal with it is what i say these days .. Best of luck n best wishes take care x


----------



## fuzzy butterfly

Oh rita bullys should be whipped. May be they are jealous coz u are awesome. You deal with stuff they cant imagine.. Stay strong hun xx


----------



## -Rita-

Something is going on, weird pain keeps appearing and I don't know why. This is really scary. It gets better when I take my medicine but sometimes it's annoying and I need to get up and move around to let it pass. My back is the worst. Could this possibly be side effects from something?

I've also been eating a ton of fruit lately. I began eating two apples a day.Today I ate three! Oh, and I make sure to take the skin out like you all suggested. I haven't been eating any dairy besides lactose free milk and vegetable butter. I miss eating my favorite food (I was told it was really bad for me  ). I hope I'm keeping my diet well and regulated.


----------



## fuzzy butterfly

Hi Rita may i suggest you call your doctors and tell them about the pains, and see what they say.. Best wishes x


----------



## KimboHiggs

Currently on the bathroom floor burning up badly in agony :'(


----------



## ronroush7

Kim, call the ER or your doctor's office!!!!!!


----------



## ronroush7

Let us know how it goes if you have the opportunity.


----------



## fuzzy butterfly

Ye what Ron said. Call if you have 'nt already Kimbo even if it is the hospital x


----------



## duh panda

KimboHiggs said:


> Currently on the bathroom floor burning up badly in agony :'(


Hope it passes soon so you can get comfy in a better place and rest. I'm with Ron and Mandy on going into the ER if you have someone to help you there - or call in for ambulance transport if you don't have someone to assist. 

It is hard to know where the line is - when to go in and when to not go in - but crippling pain is something that should at the very least be treated, and if necessary explored. I figure, if it takes me to the floor and lasts over 15 mins. then it deserves my attention and care which includes contacting your medical team and pursuing necessary treatment until they get back to you. That's pretty much what guides my decisions now when facing varying levels or intensity of pain on such a regular basis. 

Let us know how you're doing when up to it.


----------



## KimboHiggs

Hi guys so I started throwing up quite violently then after that more pain hit and a round of diarrhoea... I seem to be ok ish now like I've got out the worst of it... If anymore bad cramps strike again I will make a call and see what they suggest!! Thanks for your support guys it's so nice to have you guys


----------



## fuzzy butterfly

KimboHiggs said:


> Hi guys so I started throwing up quite violently then after that more pain hit and a round of diarrhoea... I seem to be ok ish now like I've got out the worst of it... If anymore bad cramps strike again I will make a call and see what they suggest!! Thanks for your support guys it's so nice to have you guys


Hi Kimbo glad ur a bit better hun, but plz dont suffer unduly get help if u need to . You are welcome anytime you need us we are here. Tho some of us maybe asleep due to time zones x


----------



## ronroush7

mandyk said:


> Hi Kimbo glad ur a bit better hun, but plz dont suffer unduly get help if u need to . You are welcome anytime you need us we are here. Tho some of maybe asleep due to time zones x


I agree.


----------



## walklingtall

Nembie here
At work getting ready for the day. Started Pentasa this past weekend and tried to muster through the spasms it caused, took hysycomine for spasms, and not feeling so hot. Dr put me on 1000mg for the Crohn's mild they say. See if I can back it down to 500 mg. Skipped the dose last night to see what happens and woke up this morning not so bad, nausea and some cramping , and took the 500 dose to see how that goes. See what happens while here at work. This stuff is hit or miss and sucks!
Hope all your day goes good for all of you.


----------



## fuzzy butterfly

Hi and welcome sorry you need to be here mind . Not sure if trying to change dosage so soon is wise , please check that with your doc. I know some meds can be abit rough till they settle down, and you dont want to end up in a bad flare.  just advice of course what you do is up to you. Best wishes


----------



## -Rita-

Quite exhausted. Have this week filled with tests and barely have time to concentrate on my actual life. Pain intensified because of the nerves and anxiety. Have a huge headache, can't think straight. I need to rest but not even that they allow me to do. Study, study, study! Jesus.


----------



## fuzzy butterfly

Aw Rita sorry things are abit rough right now hun  hang in there n you can have a moan to us when you need to , its what we do n share a laugh now n then too  love n best wishes take care x


----------



## ronroush7

My stomach speaks to me some but can't do anything on the toilet today.


----------



## fuzzy butterfly

My stomach never blinking shuts up it talks more than i do lol. Ye i get days like that too no movement for a couple of days sometimes . Then other days well !! You dont wana know  ...


----------



## penhow45

ronroush7 said:


> My stomach speaks to me some but can't do anything on the toilet today.


are you still bloated?


----------



## penhow45

happy to report...i saw my surgeon and my pain IS justified! i have 3 setons...1 is through the muscle. doc says all looks good. no infection, but isnt able to say how long they will have to stay in. thank you LORD for pulling me out of this darkness!!!


----------



## ronroush7

Praise the Lord.  So glad for you.


----------



## ronroush7

penhow45 said:


> are you still bloated?


Last two days I have felt bloated but able to only go once.


----------



## ronroush7

penhow45 said:


> are you still bloated?


Since you originally asked me,  I have been to the bathroom two or three times.  

 2


----------



## fuzzy butterfly

Hi Penhow thats great news some relief at last glad u feel better . Take care..


----------



## penhow45

mandyk said:


> Hi Penhow thats great news some relief at last glad u feel better . Take care..


HAPPY FRIDAY ALL!!!! i hope and pray you all have a wonderful day!


----------



## duh panda

mandyk said:


> My stomach never blinking shuts up it talks more than i do lol. Ye i get days like that too no movement for a couple of days sometimes . Then other days well !! You dont wana know  ...


I'm home alone majority of the week - my digestive tract and I have regular discussions, maybe they're more like debates or arguments - either way, we talk and it answers more often then not. Insanity at its finest?  

Although, jokes aside for me I can usually count on there being more noise when thing's aren't moving or are on the slow side then when everything is frequent.


----------



## fuzzy butterfly

Hi duh oh mine rambles on with it's self all the time regardless. Im begining to think it has a mate in there


----------



## penhow45

mandyk said:


> Hi Penhow thats great news some relief at last glad u feel better . Take care..


thank you so much!


----------



## penhow45

mandyk said:


> Hi duh oh mine rambles on with it's self all the time regardless. Im begining to think it has a mate in there


its so good to have a sense of humor!!!!


----------



## Om3ga1

-Rita- said:


> Something is going on, weird pain keeps appearing and I don't know why. This is really scary. It gets better when I take my medicine but sometimes it's annoying and I need to get up and move around to let it pass. My back is the worst. Could this possibly be side effects from something?
> 
> I've also been eating a ton of fruit lately. I began eating two apples a day.Today I ate three! Oh, and I make sure to take the skin out like you all suggested. I haven't been eating any dairy besides lactose free milk and vegetable butter. I miss eating my favorite food (I was told it was really bad for me  ). I hope I'm keeping my diet well and regulated.


Keep the fresh food intake to a minimum. To much fiber can actually be causing your pain.


----------



## fuzzy butterfly

penhow45 said:


> its so good to have a sense of humor!!!!


Humor keeps me alive mate. Without it i would probable have gone to the dark places more times than i have. So is my motto nowadays. Laughter is the best medicine they say, so i say ok i will get me some of that then, does it come on prescription


----------



## duh panda

mandyk said:


> Humor keeps me alive mate. Without it i would probable have gone to the dark places more times than i have. So is my motto nowadays. Laughter is the best medicine they say, so i say ok i will get me some of that then, does it come on prescription


Lol this is fantastic! Seriously making my afternoon Mandy


----------



## fuzzy butterfly

Well im glad to cheer you up mate. Im bloody depressed now  guna have to take more of my laughter pills i think  now !! Only kidding im delerious so blooming tired iv got match sticks holding my eyes open


----------



## duh panda

mandyk said:


> Well im glad to cheer you up mate. Im bloody depressed now  guna have to take more of my laughter pills i think  now !! Only kidding im delerious so blooming tired iv got match sticks holding my eyes open


Match sticks sound mighty uncomfortable, I suggest taping them open  

Hope you get to rest up soon, delirious can be highly enjoyable in its own strange way, but personally I'm pretty partial to waking up and that feeling of everything being reset.


----------



## fuzzy butterfly

Mmm tape ye probably less painfull  mite try that tmoz when my lamps  are going out  
 Ye waking is good but getting outa bed takes me a while, wake up stiff as a board. That could be due the the fact that i can be a bit of a plank at times


----------



## ronroush7

duh panda said:


> Match sticks sound mighty uncomfortable, I suggest taping them open
> 
> Hope you get to rest up soon, delirious can be highly enjoyable in its own strange way, but personally I'm pretty partial to waking up and that feeling of everything being reset.




 2


----------



## duh panda

I tried blueberries in a smoothie since it's been about 6 months since giving them a try and when things aren't terrible they are generally tolerated in small blended quantities. Needless to say, today's a bit... blue. It would seem I'm a little quick to rush the blueberry front.


----------



## fuzzy butterfly

Hi hun oh blue is novel  take care x


----------



## ronroush7

Better than yesterday 

 2


----------



## fuzzy butterfly

Hi my old mucker glad to hear that Ron. Hope tomorrow is better still


----------



## penhow45

did too much yesterday...ended up taking my best frien to the V A. he had hernia surgery wednesday and has developed pneumonia. i was happy to be there for him, but today i hurt. hope you all are enjoying your day.


----------



## fuzzy butterfly

Aw penhow. You  help a friend n end up  hurting yourself. Bless you for helping n hope you feel better soon. Also hope your friend does too.


----------



## penhow45

mandyk said:


> Aw penhow. You  help a friend n end up  hurting yourself. Bless you for helping n hope you feel better soon. Also hope your friend does too.


thanks mandyk...just gotta learn my limits!!


----------



## fuzzy butterfly

Your welcome. Ye me too realy. Im always pushing them. Then i regret it later  take care love


----------



## ronroush7

Sometimes I push it a little .


----------



## ronroush7

Food wise.


----------



## fuzzy butterfly

Mmm i can do that too sometimes although i dont get pain from it. I can be on the loo more the next day or two.


----------



## Mvan

Does anyone have any suggestions of questions I should ask or what kind of testing I should ask to be done? I have my appointment on Wednesday with a specialist and its a different one then I went to last year, I want answers and I want to know what the heck is going on with me deep down inside I really feel like its crohns but I don't really even know what kind of questions I should ask..


----------



## fuzzy butterfly

Ok here goes some you may know btw or had done .
Feacal calprotectin test
ct / mir scan
Colonoscopy
As regards testing they can help see whats going on.
Ask them if they will do all or as many tests etc as possible as you cannot carry on the way things are , that you have suffered enough .
Also what meds/op's are possible to help you. 
If they try stalling tactics. Just say excuse me but if it was you ,would you want people fobbing you off ?? 
Be firm n state your case. Dont be rude just stand your ground politely. 
Ask if any meds are going to affect you in any that will make things worse as some can do. 
I cant think of anything more at this point. Best wishes n good luck


----------



## penhow45

mandyk said:


> Ok here goes some you may know btw or had done .
> Feacal calprotectin test
> ct / mir scan
> Colonoscopy
> As regards testing they can help see wwhats going on.
> Ask them if they will do all or as many tests etc as possible as you cannot carry on the way things are , that you have suffered enough .
> Also what meds/op's are possible to help you.
> If they try stalling tactics. Just say excuse me but if it was you ,would you want people fobbing you off ??
> Be firm n state your case. Dont be rude just stand your ground politely.
> Ask if any meds are going to affect you in any that will make things worse as some can do.
> I cant think of anything more at this point. Best wishes n good luck


what mandyk said!!!!


----------



## ronroush7

I had sweet potatoes that were already made up from the store and I think  they are messing my stomach up.


----------



## duh panda

Last weekend was awesome. I didn't go out, I didn't dress up, but I also stayed up later then usual and was able to do so while maintaining decent conversation. Its been a while since joints, gut and energy levels all cooperated in tandem. I took full advantage of the upswing - but have been out of it and making payments for it all week. 

I don't usually mess up or miss medications - this week my recollection/ memory is so unreliable I still cant remember if I did or did not take my prednisone Sunday, I just know that possibility didn't enter my mind till I was lying down for the night and by early morning I was puking, shaking and dizzy in a way that is not my usual in the slightest. Thankful dose is low.

I don't usually slip on my eating schedule - this week I can't even seem to be getting adequate liquids and I'm not feeling hungry like I've grown to expect.

Naps have made their return. Along with falling asleep by 8:00 pm and waking up wired at 3 a.m. 

Today I am napping away, taking it easy and trying to place as much into the reserve tank as possible to go all out and maybe, just maybe i'll make it to 9:00 tomorrow night and enjoy the full day. 

Because tomorrow is my birthday! Hands down my FAVORITE DAY OF THE YEAR. And I've got plans to see through - plans centered (mostly) around delicious foods and time spent with the people I love. I hope, no matter how far I age, my excitement about birthdays never fades.


----------



## ronroush7

Support sent your way and an early happy birthday.  I really hope it is happy.


----------



## duh panda

Thanks Ron! Haven't had an unhappy one yet  

Hope your stomach stops being a bother and the rest of your day's a good one.


----------



## ronroush7

Thanks.  It comes and goes.


----------



## fuzzy butterfly

Happy birthday Duh panda hope you have a fab day


----------



## fuzzy butterfly

ronroush7 said:


> I had sweet potatoes that were already made up from the store and I think  they are messing my stomach up.


Ron what are we to do with your tummy . I hope youve threatened it with me if it dont behave. Just tell it il come over n sort it out good style if it dont stop giving you bother.  That might make it behave coz im sure it wont wana deal with me 
Seriously tho i really hope you can get some relief on that one my friend.


----------



## ronroush7

Thanks.  Better today.


----------



## fuzzy butterfly

Good glad to hear that Ron. Hope you keep well love.  Time to sleep now for me bye for now.Take care


----------



## ronroush7

Sleep well.


----------



## fuzzy butterfly

Thanks Ron


----------



## ronroush7

Welcome.


----------



## penhow45

duh panda said:


> Thanks Ron! Haven't had an unhappy one yet
> 
> Hope your stomach stops being a bother and the rest of your day's a good one.


oh, HAPPY HAPPY day of birth duh panda!!!!!!!


----------



## penhow45

been slacking this past week. too much going on!! (most of it not good either) BUT,i am up and showered. going to put last week behind me and start fresh! Humira injection today...i hope it helps. after 4 years of bi-weekly injections, i think im becoming immune. it seems to wear off after day 9.LOVE to all!!!


----------



## ronroush7

Happy birthday, duh panda.


----------



## ronroush7

penhow45 said:


> been slacking this past week. too much going on!! (most of it not good either) BUT,i am up and showered. going to put last week behind me and start fresh! Humira injection today...i hope it helps. after 4 years of bi-weekly injections, i think im becoming immune. it seems to wear off after day 9.LOVE to all!!!


Can I ask how long you have been on the Humira?


----------



## duh panda

penhow45 said:


> oh, HAPPY HAPPY day of birth duh panda!!!!!!!


Thank you! 

And thank you to everyone else <3

It turned out to be a wonderful day; celebrations extended well into the weekend! I think my favorite part was getting to make/ bake my own pumpkin pie since my significant other focused on cleaning up and was a very attentive sous chef. Love cooking without a care. 

Hope you all are off to great starts for your week.


----------



## fuzzy butterfly

Glad u had a great day hun n god bless him for cleaning up. Can i borrow him plz  take care


----------



## duh panda

mandyk said:


> Glad u had a great day hun n god bless him for cleaning up. Can i borrow him plz  take care


XD haha you cracked both of us up! If it meant taking a trip to the UK I'm sure it would take minimal persuasion :rof:


----------



## fuzzy butterfly

glad to give u a chuckle. In that case pack a bag u would both be welcome , we can chat while he cleans


----------



## duh panda

You've got yourself a deal. ^.^ Same goes if you're ever in our neck of the woods.


----------



## fuzzy butterfly

Cheers hun . Watch out for the knock at the door.. hope your keeping well  !


----------



## penhow45

ronroush7 said:


> Can I ask how long you have been on the Humira?


its been about 4 years now ronroush. it helps quite well, but not so much with the draining fistulas.


----------



## ronroush7

Ask your doctor about it's effectiveness considering the draining fistulas.


----------



## penhow45

ronroush7 said:


> Ask your doctor about it's effectiveness considering the draining fistulas.


hey ronroush, thanks for the advice. doc is considering increasing the frequency of the humira and adding 6-mercaptipurine....once the abscesses have drained. im not big on the later drug...isnt it for chemo??? seems quite harsh on my body.


----------



## ronroush7

Are you referring to 6 mp?


----------



## penhow45

ronroush7 said:


> Are you referring to 6 mp?


yes. i dont know much about it.


----------



## ronroush7

I don't know much about it either but I believe the internet said it was used for lymphoma.


----------



## penhow45

ronroush7 said:


> I don't know much about it either but I believe the internet said it was used for lymphoma.


hmm...thats similar to what i have read. im going to try NOT to take it.(unless theres something they arent telling me.) i would think the risks would outweigh the benefits.


----------



## ronroush7

Yes..


----------



## duh panda

penhow45 said:


> doc is considering increasing the frequency of the humira and adding 6-mercaptipurine....once the abscesses have drained. im not big on the later drug...isnt it for chemo??? seems quite harsh on my body.


6-MP (and azathioprine) were initially used for cancer but have shown benefits in treating fistulas and slowing antibody response to biologics like Humira in addition to treating IBD without use of other meds in some. It was my GI's first choice years ago when I was still on Humira to help slow the building of antibodies and shift me off of prednisone.

It is my understanding that the dose used for IBD is lower then what is used for cancer patients and so while risky, the application in IBD is different then as a course of chemo and should be taken into consideration when considering google searches.

Largest risk with 6-MP in my experience was with my liver function - we did blood work every 8 weeks and once my levels were showing undesirable effects of the drug switched over to Azathoroprine. While the risks of most IBD drugs seem substantial to me, many doctors will utilize a combo of meds to try to get the most out of each option for a case before completely moving to a new course of treatment. 

I would push to understand your doc's logic. Why this in combo with Humira instead of say, Azathoroprine or even methotrexate? What is the reasoning when they considered you as a patient and the options available? Ask not just about the medication, but the medication in relation to your specific case  history.


----------



## penhow45

duh panda said:


> 6-MP (and azathioprine) were initially used for cancer but have shown benefits in treating fistulas and slowing antibody response to biologics like Humira in addition to treating IBD without use of other meds in some. It was my GI's first choice years ago when I was still on Humira to help slow the building of antibodies and shift me off of prednisone.
> 
> It is my understanding that the dose used for IBD is lower then what is used for cancer patients and so while risky, the application in IBD is different then as a course of chemo and should be taken into consideration when considering google searches.
> 
> Largest risk with 6-MP in my experience was with my liver function - we did blood work every 8 weeks and once my levels were showing undesirable effects of the drug switched over to Azathoroprine. While the risks of most IBD drugs seem substantial to me, many doctors will utilize a combo of meds to try to get the most out of each option for a case before completely moving to a new course of treatment.
> 
> I would push to understand your doc's logic. Why this in combo with Humira instead of say, Azathoroprine or even methotrexate? What is the reasoning when they considered you as a patient and the options available? Ask not just about the medication, but the medication in relation to your specific case  history.


many thanks for your wisdom duh panda. i need to take you with me to my next appointment!!!!!


----------



## ronroush7

Someone from Accordant Health Care called tonight to check on me.  I mentioned that I had one episode of incontinence with my bowels after going months without it happening for a while.  I also mentioned one day when I had diarrhea and where I had some mucus in my stool.  I also mentioned feeling a little woozy.  She thought I should call my gi tomorrow. 

 2


----------



## ronroush7

By the way, I am winning.

 2


----------



## fuzzy butterfly

Hi Ron. Ye she maybe right on calling ur gi. Best to double check on this mate.


----------



## penhow45

ronroush7 said:


> By the way, I am winning.
> 
> 2


you ARE a winner!!!! def call your gi.


----------



## ronroush7




----------



## penhow45

going out for dinner for my friends birthday tonight...instead of being happy,i feel stressed. trying to re-focus my thoughts and stop worrying all the time. ( i hope they dont mind me bringing a pillow to sit on! lol! restaurant chairs & setons do not make for an enjoyable occasion!)


----------



## duh panda

penhow45 said:


> going out for dinner for my friends birthday tonight...instead of being happy,i feel stressed. trying to re-focus my thoughts and stop worrying all the time. ( i hope they dont mind me bringing a pillow to sit on! lol! restaurant chairs & setons do not make for an enjoyable occasion!)


Hey Penhow! I always find it helpful to eat before going out (even for dinner parties or events revolving around food). Doing that has certainly helped curb the stress/ anxiety I feel when facing group situations, people I may not know well/ don't know me well, or "strange" restaurant  food and unfamiliar bathrooms. I cant imagine setons would feel good sitting in ANY kind of chair, cushioning or not. 

Hope you are able to make it out and find enjoyment in the evening. Never feel bad if you need to excuse yourself early and head home to rest  Making an appearance rather then sticking around the full night keeps you mysterious


----------



## ronroush7

Wishing you the best.


----------



## fuzzy butterfly

Hope you can enjoy your night out penhow. Likewise what duh panda says better to leave early n be mysterious .


----------



## ronroush7

I had a little bit of blood in my stool this morning.   I have also felt like I can't empty myself most of day.  My doctor had me do a calprotectin and blood work.

 2


----------



## fuzzy butterfly

Love n support Ron.


----------



## ronroush7

Thanks, Mandy.


----------



## fuzzy butterfly

hope the doc helps n you get some relief


----------



## SDScotty72

Not a good day[emoji20] bloated and having cramps. Also when I have these symptoms I also get lower back pains. Does anyone experience this? Also i have started back in the fodmap diet again. I stopped after starting Humira thinking I could eat anything. Well that's not the case.


----------



## duh panda

Lost 8 lbs. so far this week. I am 100% sure there is some kind of secondary infection running havoc. Is it a UTI, C-Diff, Sinus infection? Don't hold your breaths - there were no available appointments with my GP Till Monday morning. 

Hope you can get a bit of comfort tody SDScotty - when bloated/ cramping I always feel it through into my lower back and hips as well as down into the pelvis. Figure it has something to do with how the intestines lie in the abdominal cavity.


----------



## penhow45

duh panda said:


> Hey Penhow! I always find it helpful to eat before going out (even for dinner parties or events revolving around food). Doing that has certainly helped curb the stress/ anxiety I feel when facing group situations, people I may not know well/ don't know me well, or "strange" restaurant  food and unfamiliar bathrooms. I cant imagine setons would feel good sitting in ANY kind of chair, cushioning or not.
> 
> Hope you are able to make it out and find enjoyment in the evening. Never feel bad if you need to excuse yourself early and head home to rest  Making an appearance rather then sticking around the full night keeps you mysterious


duh panda...all went well. i took my pillow and had soup. cheap nite!!!!!


----------



## SDScotty72

duh panda said:


> Lost 8 lbs. so far this week. I am 100% sure there is some kind of secondary infection running havoc. Is it a UTI, C-Diff, Sinus infection? Don't hold your breaths - there were no available appointments with my GP Till Monday morning.
> 
> 
> 
> Hope you can get a bit of comfort tody SDScotty - when bloated/ cramping I always feel it through into my lower back and hips as well as down into the pelvis. Figure it has something to do with how the intestines lie in the abdominal cavity.



Thanks duh panda and the same to you.[emoji4]


----------



## duh panda

penhow45 said:


> duh panda...all went well. i took my pillow and had soup. cheap nite!!!!!


Yay!!! :dusty: Great to hear.


----------



## SDScotty72

Well it's the end of the day for me. Feeling much better than I did this morning and afternoon. GoodNight all.


----------



## ronroush7

SDScotty72 said:


> Well it's the end of the day for me. Feeling much better than I did this morning and afternoon. GoodNight all.


Good night, Scotty.

 2


----------



## penhow45

finally friday!!!! does anyone have plans for the weekend, so i can live vicariously through you??!!! lol!!!


----------



## fuzzy butterfly

Yeah!! Friday  oh no i forgot i work saturdays . My weekend is sun-mon. Im planing to sleep through most of it so maybe im not the one for you to live vicariously through


----------



## ronroush7

Laundry and church and watching football


----------



## fuzzy butterfly

Enjoy Ron


----------



## penhow45

ronroush7 said:


> Laundry and church and watching football


church and football ronroush.....YES!!!!!!!!


----------



## penhow45

mandyk said:


> Yeah!! Friday  oh no i forgot i work saturdays . My weekend is sun-mon. Im planing to sleep through most of it so maybe im not the one for you to live vicariously through


no worries....i wish i could work!! have a great weekend!!


----------



## SDScotty72

Today was a good. Feeling really tired, and a couple visits to my porcelain throne., but no gut pain.


----------



## ronroush7

Sicker than I have felt


----------



## SDScotty72

ronroush7 said:


> Sicker than I have felt



Sorry to hear that Bro[emoji17] hope you start feeling better.


----------



## ronroush7

Thanks


----------



## duh panda

52 degrees and not a cloud in sight. Time to get out for a bit of adventure  Since realizing the park and walking paths nearby have OPEN bathrooms &/or port-o-potties stationed roughly every mile I don't think I've ever felt this comfortable just heading out for a day with no immediate plan.


----------



## fuzzy butterfly

Love n best wishes to all.


----------



## Om3ga1

So far so good today. I tend to take this 1 day at a time.


----------



## penhow45

ronroush7 said:


> Sicker than I have felt


what is going on ronroush??? i know you said the doc wanted to run more tests. any results? im sad that you are having such a tough time.


----------



## ronroush7

No results yet but I had two instances of losing control of my bowels this morning.


----------



## fuzzy butterfly

Aw Ron mate. I really hope they get u sorted soon love. Sending love n hugs.


----------



## ronroush7

You are so sweet , Mandy.  I kept my wife out of the bathroom for a while.


----------



## fuzzy butterfly

Aw thanks , bet she was glad of that eh!!. I hate to hear of my friends here suffering, it breaks my heart. I know im ok at the mo n have been for while, but i sure aint forgot how it feels. So i feel for you n the others so much .


----------



## Om3ga1

Hang in there Ron.


----------



## penhow45

ronroush7 said:


> No results yet but I had two instances of losing control of my bowels this morning.


im sorry to hear that. many prayers sent your way. i hope the docs sort this out soon.


----------



## ronroush7

Thanks, penhow.


----------



## duh panda

Today, I am feeling hungry. Not feeling hungry is starting to be a reliable red flag for me that something is amiss either crohn's wise or a secondary infection of some kind. 

Today I'm feeling relieved, and proud. It's always such a relief to go into an appointment and have everything run smooth and quick. Plus, I'm finally getting used to my new health providers and their office locations which makes going in that much better. Sinus infection that seems to have piggy backed a cold. So glad I didn't wait any longer to just "see if it'll clear up" as my ego likes to convince me. I'm proud that I went in earlier then I have in the past (without any parental nagging to boot) to get a professional opinion and treatment as needed. Should be back to as tip top condition as I've been within the week  Just in time for to cook up a storm and host Thanksgiving next week.


----------



## fuzzy butterfly

Hi duh panda. Glad you got on top of it quickly hun. Heres to you keeping well  . Happy thanksgiving for next week


----------



## ronroush7

Does anyone ever feel like they can't empty themself?


----------



## duh panda

All the time Ron, it's most discomforting.


----------



## Christi

Felt that this morning ron, i had the urgency to go but just couldn't


----------



## ronroush7

Thanks. My blood work came back fine but think I still have blood in stool.  Waiting for calprotectin.


----------



## Christi

Maybe they will give you some prednisone because i think you might have a flair? Could be wrong best they do every test. Hope get that calprotectin quick


----------



## penhow45

family vacation to vegas for thanksgiving...sounds awesome right? WRONG! I am already stressed over everything from the long flight to holding everyone back from having fun. I know it would be good for me to get away but, between the crohns, the setons and my anxiety...it feels like WORK! oh, and did i mention having someone care for my 10yr old dog who has bad arthritis... ugh...what to do....


----------



## ronroush7

Thanks.  I am no expert but sometimes I feel like I am having a flare.


----------



## Om3ga1

Another fairly smooth morning. We''l just have to see how the rest of the day goes.


----------



## ronroush7

Like I can't empty myself.


----------



## Om3ga1

ronroush7 said:


> Like I can't empty myself.


It may be inflamation.


----------



## ronroush7

Thanks.


----------



## fuzzy butterfly

Much love n support to you all. Your in my prayers each night old chums. I never forget to mention you all . We all need any ounce of help we can get be it medical or divine.


----------



## penhow45

mandyk said:


> Much love n support to you all. Your in my prayers each night old chums. I never forget to mention you all . We all need any ounce of help we can get be it medical or http://cdn-ugc.cafemom.com/gen/constrain/500/500/80/2015/11/15/08/d4/pg/poccvsi74k.jpgdivine.


AMEN mandyk!!!!!!!!!!!!


----------



## Christi

Two of my toes are dead since yesterday lol


----------



## ronroush7

Prayers and support.


----------



## duh panda

Every now and then I think "I could totally be working right now!" And then those couple hours of normality pass and weeks like this happen where I don't even realize it's Friday and my week has passed until I'm almost ready for bed. I usually feel guilty. But I'm starting to realize the upsides to these very very backward weeks mean I go into the weekend with a clean house since all my Tuesday/ Wednesday/ Thursday tasks did not get finished till tonight. Not bad just a very effective reminder of where my limits lie. 

Hope all are keeping sane tonight!


----------



## ronroush7

My resection caused me to retire early.


----------



## ronroush7

It is bad having a sick dog when you have Crohn's.


----------



## Mckillip9514

Hey everyone!
So I am feeling soooo much better now, like Most of you I have been on every medication for Crohn's disease. I went from having digestive issue from when I was very young to being diagnosed at 22;( it was horrific, this journey we embark on every single day, would make anyone want to run away and hide from the world, I have arthritis, endometriosis  migraines, you name it because I was so malnourished. I gained a crap load of weigh because I just ate anything that didn't make he throw up.which was never much. Yes I was on prednisone gained weight when I was on that for sure, but the remicade, humira, methotrexate, Imuran morphine, precs, ect they all made things way worse;( I was hostipalized for years all the time, I had no quality of life. 
When my mom died 4 months after I had my first bowel resection I said no more. 
I couldn't do it anymore I wanted to die. I had a colonoscopy and the sugary didn't work, so I was in sever pain for years and grieving my moms death, not a good combination. 
I decided to take my own health into my own hands. I was acute at the time but determined!!! I started researching how to get nutrients in my body to help calm down the inflammation, I was hospitalized just for the psoriasis I couldn't  walk for three weeks, in a wheel chair. Thanks remicade. I know this isn't the case for everyone but this was my experience. So knowing that the dr do not see a correlation between what we eat and how are bodies function, blows my mind but that's what happens when you only take 40 hours out of 7 years on nutrition;(
I started to see a fantastic holistic psychologist, a holistic nutritionist, I was walking doing very light therapeutic yoga, and after a while things started to change. I was able to leave the house I had a bit more energy, because I was getting nutrience I never had before. I was very carful , my gastronologist my family dr, where all on board. Instead of taking a ton of narcotics I smoke medicinal marijuana for pain/or anxiety but I rarely have to do that now. My depression has lifted my anxiety minimal, I have 0 psoriasis, my hair grew back, my nails, I have lost 70lbs naturally not from having to starve myself because I was sooo incredibly sick. I decided after seeing positive results to go back to school for culinary nutrition, I had to learn how to cook with all of these natural whole foods, it took time, it's all trial and error. I started taking a product that was just fruits and vegetables in these little capsules, they are giving me all the nutrience I need without having to eat raw kale everyday, although I do love it just cooked, lolI have incredible bowel movements now, I'm talking a foot and a half normal poops everyday. That alone is priceless, I have more energy and that sparkle that I had lost for 15 years is back)))
I just want all of you to know that there is always hope, we are not doomed, we are beautiful powerful people who just happen to have a really shitty disease. 
With pain comes great strength!!! 
If you ever want to talk message me, I love listening to people and there stories as well
Thank you for reading this post)))


----------



## ronroush7

Thanks


----------



## penhow45

ronroush7 said:


> It is bad having a sick dog when you have Crohn's.


oh no...you have a sick dog?  my little guy is my best friend! i pray for good health and happiness for both of you!!!!!


----------



## ronroush7

Thanks.  He is better.


----------



## Om3ga1

And how are you doing Ron?


----------



## ronroush7

Feeling like I can't empty myself


----------



## Om3ga1

Try sitting in a tub of hot water. Always makes me feel better.


----------



## ronroush7

Thanks.


----------



## fuzzy butterfly

I have had a shity day literaly today. Which is quite unusual for me these days. Oh well got the loperimide out again....
hope everyone feels better soon


----------



## ronroush7

You too , Mandy.  I was sore in my rectal area earlier and was feeling I couldn't empty myself.  Is this time to use the Levsin?


----------



## fuzzy butterfly

Thanks Ron.. i would say ye it maybe time to try the Levsin. Hope it helps. Can you eat prunes ? they are a good laxative n natural.


----------



## ronroush7

Not sure.  They might aggravate my Crohn's.


----------



## 2010mustang

Today was a good day. Went to work and talked to my bosses. I ran out of sick days but still have fmla. Told them i was talking to my doctor and was needing time off. Was told to set up my appointments and they had no problem with me taking those days off that they just want to see me healthy. Relieved alot of stress. After 5 days off last week my joints were good until 3/4 of my shift.


----------



## teeny5

Back is killing me today


----------



## duh panda

ronroush7 said:


> Not sure.  They might aggravate my Crohn's.


Maybe try prune juice? Should work the same if it's going to help but not having any of the fiber or at least far less.


----------



## fuzzy butterfly

Yep agree with duh there Ron the juice mite be better.


----------



## fuzzy butterfly

2010mustang said:


> Today was a good day. Went to work and talked to my bosses. I ran out of sick days but still have fmla. Told them i was talking to my doctor and was needing time off. Was told to set up my appointments and they had no problem with me taking those days off that they just want to see me healthy. Relieved alot of stress. After 5 days off last week my joints were good until 3/4 of my shift.



Hi yep my joints ease while off work. When i was off for 3/4 mths with op they were pretty good then as soon as back at work within in the day they started to  ache again. Hugs


----------



## fuzzy butterfly

teeny5 said:


> Back is killing me today


Hope your back eases up soon.


----------



## duh panda

Utter crap today. I'm trying not to go all pessimistic blaming meds, but last 8 weeks has consistently involved migraines mid-week lasting 12-30 hours following MTX injection. Doesn't help that migraine days usually means not eating very well, not being able to tolerate prednisone or painkillers like tylenol till later in the day, not keeping down liquids seems to just make it 10x more complicated. All that said, I have some very kickass centerpieces for Thanksgiving dinner that were a blast to make and so worth it even though I know I will be finding glitter around the house for months.
Here's to hoping my man and roommate will step it up tonight after they get home from work with cleaning and prep for hosting tomorrow's dinner! Already got one text saying they're intending to clean/ rearrange furniture, so very promising that help will arrive!


----------



## ronroush7

Like I can't empty myself.


----------



## ronroush7

It doesn't usually happen but i it hurt a little when I got my B 12 shot today.


----------



## fuzzy butterfly

My shot is usualy abit sore. Can ache for a day or so too. But then im that skinny theres no meat to soften the blow as it were


----------



## Om3ga1

Last night was terrible. Up 6 times. Didn't really sleep that much.


----------



## ronroush7

mandyk said:


> My shot is usualy abit sore. Can ache for a day or so too. But then im that skinny theres no meat to soften the blow as it were


----------



## 2010mustang

Hope you feel better and find some rest om3ga1.


----------



## Om3ga1

Not bad today.


----------



## ronroush7

We are having an extended Thanksgiving tonight.  I hope my stomach is up for it.


----------



## Om3ga1

ronroush7 said:


> We are having an extended Thanksgiving tonight.  I hope my stomach is up for it.


Go get 'em Ron. :cookie::cookie:


----------



## ronroush7




----------



## fuzzy butterfly

Hope u get to enjoy it


----------



## ronroush7

Thanks


----------



## duh panda

ronroush7 said:


> We are having an extended Thanksgiving tonight.  I hope my stomach is up for it.


Hey, you, Ron's stomach - yeah I'm talking to you - You better behave tonight. Thanksgiving is the greatest and no one likes when their body is being a pain, especially during the holidays. 

I think you're good to go  Hope you enjoy it tonight! Leftovers again here, I have a feeling we'll be eating creative variations of Thankgiving food stuffs for a good week.


----------



## penhow45

HAPPY BELATED THANKSGIVING EVERYONE!!!!! I want you to know, i did go on vacation after all...and had fun...setons and all! I am thankful for the strength we all have to NEVER give up!!! We are an amzing bunch of fighters!!!!! LOVE TO ALL!!!


----------



## ronroush7

penhow45 said:


> HAPPY BELATED THANKSGIVING EVERYONE!!!!! I want you to know, i did go on vacation after all...and had fun...setons and all! I am thankful for the strength we all have to NEVER give up!!! We are an amzing bunch of fighters!!!!! LOVE TO ALL!!!


Same to you.


----------



## penhow45

ronroush7 said:


> Same to you.


thanks ronroush!!! love & light headed your way!!!


----------



## Christi

The fever wont stop! Whats is this


----------



## ronroush7

Have you called a doctor , Christi?


----------



## Christi

No i didn't call my GI my next appointment is in January , They did a full blood count again


----------



## Christi

As you know ron i were on antibiotics and it didn't help, what could this be? I'm starting to worry


----------



## ronroush7

Maybe it would be good see your doctor before January.


----------



## fuzzy butterfly

Christi said:


> The fever wont stop! Whats is this


Christi hun please phone your doc,dont wait for jan. Love n hugs


----------



## fuzzy butterfly

penhow45 said:


> HAPPY BELATED THANKSGIVING EVERYONE!!!!! I want you to know, i did go on vacation after all...and had fun...setons and all! I am thankful for the strength we all have to NEVER give up!!! We are an amzing bunch of fighters!!!!! LOVE TO ALL!!!



So glad u had a great time Penhow. Thanks n love to you too


----------



## fuzzy butterfly

Love hugs n support to all. You are all AWESOME !!


----------



## Christi

mandy hugs to you to


----------



## fuzzy butterfly

Thanks hun.


----------



## ronroush7

mandyk said:


> Love hugs n support to all. You are all AWESOME !!


So are you, Mandy.


----------



## Om3ga1

mandyk said:


> Love hugs n support to all. You are all AWESOME !!


Yes I know. But it's nice of you to notice.


----------



## fuzzy butterfly

I notice all things om3ga. Im a seer of all things :rof:.


----------



## 2010mustang

Hope everyone is feeling good today.


----------



## fuzzy butterfly

Likewise your self 2010. 
Like wise  all


----------



## ronroush7

Twice , in the last twenty four hours, I have had pain in the rectal area.  Not a bad pain but I wondered if anyone else experienced this?


----------



## fuzzy butterfly

I havent Ron even in my bad days. So i can only send u love n support. Maybe ring ur doc too hun


----------



## ronroush7

Thanks.


----------



## fuzzy butterfly




----------



## 2010mustang

Im normal, constant joint pain and naseua. Called rhuemo 2 wks ago no answer to my message. Called back today left a message at 9am. No return call so i called again. Was told she would get back to me. Had naseua a month with no relief in pain from the aza. Guess ill see if they return my call this time.


----------



## Om3ga1

Done with 6MP. Tired of finding my hair everywhere but on my head.


----------



## 2010mustang

Got called back. My rhuemo and gi doctors talked. They will call my insurance and see about remicade infusions every 4 weeks along with mexotrexate and folic acid. Was told to stop azathiroprine.


----------



## ronroush7

Om3ga1 said:


> Done with 6MP. Tired of finding my hair everywhere but on my head.


Have you talked to your doctor about what is going on with your hair?


----------



## fuzzy butterfly

Hi 2010 Aza made me sick after i took it,about 5/6 mths after starting it. Hope the remicade works for you.


----------



## Om3ga1

2010mustang said:


> Got called back. My rhuemo and gi doctors talked. They will call my insurance and see about remicade infusions every 4 weeks along with mexotrexate and folic acid. Was told to stop azathiroprine.


Well let's hope it works.


----------



## duh panda

Since Dec 1-7 is IBD awareness week in the U.S. I've been posting an IBD awareness post on facebook each day for friends etc. It is more draining emotionally then I anticipated. Ready for the 8th and too stubborn to quit after making it this far! 

Topics covered include:

general info for IBD awareness re: crohn's and UC
IBD and Diet
IBD Exercise, exhaustion and fatigue
The importance of support
IBD in Pediatrics. 

2 days left and scrambling for ideas - anything IBD topic related anyone here thinks should be covered in the effort of raising awareness in peers and on social media? I am staying away from medications and treatments because well... it'd probably end up a dissertation with me writing it and wouldn't be fit for social media consumption lol


----------



## fuzzy butterfly

Well done you. Thanks duh.Your efforts are appreciated.
have u inc how it can affect work life...


----------



## duh panda

mandyk said:


> Well done you. Thanks duh.Your efforts are appreciated.
> have u inc how it can affect work life...


Ohh I haven't! That would be a really good point to discuss. Thank you! <3


----------



## ronroush7

duh panda said:


> Since Dec 1-7 is IBD awareness week in the U.S. I've been posting an IBD awareness post on facebook each day for friends etc. It is more draining emotionally then I anticipated. Ready for the 8th and too stubborn to quit after making it this far!
> 
> Topics covered include:
> 
> general info for IBD awareness re: crohn's and UC
> IBD and Diet
> IBD Exercise, exhaustion and fatigue
> The importance of support
> IBD in Pediatrics.
> 
> 2 days left and scrambling for ideas - anything IBD topic related anyone here thinks should be covered in the effort of raising awareness in peers and on social media? I am staying away from medications and treatments because well... it'd probably end up a dissertation with me writing it and wouldn't be fit for social media consumption lol


I changed my profile picture in Facebook for yhsy reason


----------



## fuzzy butterfly

duh panda said:


> Ohh I haven't! That would be a really good point to discuss. Thank you! <3


 No worries hun. Hugs


----------



## ronroush7

Went to the urgent care today.  Sometimes, I feel rectal/anal pain and like I couldn't empty myself.  They could only examine me externally and gave me a steroid cream.


----------



## 2010mustang

Pray your feeling better ron. Normal day for me. Except pain on the outerbackside of right knee. Never have pain on the back just the kneecap area.


----------



## Om3ga1

After spending the weekend in the cardiac unit I'm doing quite well, all things considered.


----------



## duh panda

Digging the snowy weather but feeling overwhelmed. For whatever reason lost 10 lbs. since Thanksgiving. It took me 6 months to add those 10 lbs. I'm pissed. Disheartened. And determined to get them back... plus a couple more. 

Traveling on Tuesday and not looking forward to it. I think I'm just going to pack like... 2 outfits and alternate them just so I can stop thinking so much. Airport time, flight time, followed by a 3.5 hour drive on the day I take my methotrexate injection is just... ick. So much unpredictability. Visiting with family, having mom cook for me, and whooping my grandpa's butt at cribbage is what is driving this trip. My S.O. gets his wisdom teeth pulled Monday and helping him prep food etc. because I wont be around to help is leaving me frazzled. 

Next year if people want to see me at the holiday's I think i'll just tell them they have to come to me  Now, if only I'll remember that a year from now.


----------



## fuzzy butterfly

Hope you have a nice time hun. Try not to stress it n enjoy.
hugs


----------



## 2010mustang

Had our work christmas party last night. About an 1hr and half into it began feeling sick. Manage to finish it out and been so so today. Wondering if it was the 1 drink i had or the food. Havent drank with my new meds so im leaning more towards it. Hope your feeling better soon 0m3ga1. PANDA sorry to hear about the weight loss. I struggle keeping weight on now too. Use to be upper 180s now i eat all day just to stay 170 to. 175.


----------



## ronroush7

mandyk said:


> Hope you have a nice time hun. Try not to stress it n enjoy.
> hugs


My doctor has told me smaller meals and more often


----------



## fuzzy butterfly

Hey Ron thats what i try n do. Cant eat a lot at once these days . Take care my friend


----------



## fuzzy butterfly

Om3ga1 said:


> After spending the weekend in the cardiac unit I'm doing quite well, all things considered.


 Oh om3ga. No more visits to the cardic unit please my friend. Keep well


----------



## fuzzy butterfly

2010mustang said:


> Had our work christmas party last night. About an 1hr and half into it began feeling sick. Manage to finish it out and been so so today. Wondering if it was the 1 drink i had or the food. Havent drank with my new meds so im leaning more towards it. Hope your feeling better soon 0m3ga1. PANDA sorry to hear about the weight loss. I struggle keeping weight on now too. Use to be upper 180s now i eat all day just to stay 170 to. 175.


It may have been either or  both mate. But glad your not to bad tday.. oh weight gain blinking impossible f me these days gwad look like a skeleton wearing its big brothers overcoat


----------



## 2010mustang

As i boxed my unfushed dinner last night i reheated and ate it today. It was deffinately the alcohol. So as long as im on these meds i wont be drinking anything.


----------



## Christi

Yesterday my intestines were so angry , today so far its okay lets hope they stay calm. I hope everyone feels better


----------



## Christi

Okay so today i wasnt able to go to the toilet , but stomach get pains but yet nothing.


----------



## ronroush7

Feeling like I can't empty myself today.


----------



## fuzzy butterfly

Sunday n monday had the runs. Hope today is better as back at work..
 Hope you all feel better


----------



## ronroush7

The best for all.


----------



## Suaviter

Rubbish day today. Can't remember when I last had a proper meal. Weak, tired and sore. Feel like I'm wasting away. Probably up to a stone lost already. 

Hope we all feel better soon.


----------



## ronroush7

Went to the bathroom a total of seven timesd yesterday.  Kept me up until four. Spending a while in the bathroom this morning.


----------



## duh panda

ronroush7 said:


> My doctor has told me smaller meals and more often


I think it's because my protein intake dropped. I aim for 5 to 7 meals and 3k calories but generally fall short of the goal by a meal or so. smaller more frequent meals is where it's at. Just such work - feels like all I do is eat or prep food  and I know I'm not alone in that feeling!


----------



## duh panda

2010mustang said:


> As i boxed my unfushed dinner last night i reheated and ate it today. It was deffinately the alcohol. So as long as im on these meds i wont be drinking anything.


 Mustang, what are you currently taking? I know I tried some wine earlier this year with methotrexate and NEVER AGAIN. One glass felt like hitting buzzed, drunk and hung over stages all within  a 2 hour span.

Hope everyone starts feeling better. I'm seriously starting to think seasons trigger something that stirs things up come winter.


----------



## 2010mustang

Im on methotrexate, folic acid, prednisone and begin remicade this thursday. Finished humira 2 fridays ago.


----------



## duh panda

That is my current cocktail as well. Guessing you mean Remicade  saw you over on that other thread that you start loading doses this week. Hope it goes well for you!


----------



## Christi

Woken by horrible pain, still no bm


----------



## ronroush7

So sorry.  Prayers


----------



## fuzzy butterfly

Hope u feel better soon hun n if you dont ring your doc.


----------



## Christi

I hope everyone are doing well


----------



## ronroush7

I agree with Mandy.


----------



## Christi

Ron when are your test?


----------



## ronroush7

Two forty five EST.  I hope everything works out and they find out what is going on.  My ride is coming at 1245 because I have to be there at  one fifteen to start drinking the stuff.  I have been up since seven but not able to empty myself.


----------



## fuzzy butterfly

Aw Ron hope u get some answers. Hugs


----------



## ronroush7

Thanks


----------



## Christi

Ron best of luck


----------



## ronroush7

Thanks


----------



## Christi

Still have pain and very tired ughhh i hate flares


----------



## Christi

feeling awfull


----------



## ronroush7

I hate flares too, Christi.  I hope you feel better soon.  Just said a prayer.


----------



## fuzzy butterfly

Love n hugs to all. Hope you all feel better soon.


----------



## Christi

Thanks ron thats very nice of you hugs to you. Thanks mandy hope your doing well? hugs to you to mandy


----------



## fuzzy butterfly

No probs hun. Hope you get relief soon. Im doing ok thanks . Wish everyone was too . 
prayers for better health for us all


----------



## duh panda

Hope everyone starts seeing better days as we move into the new year.  take care and rest up as needed & able!


----------



## ronroush7

You too, panda.


----------



## Christi

You to panda


----------



## Christi

Feeling allot better although i still have some pain and my stomach are burning like burning pain. Will see how i feel next week want to start yoga again. Hugs to everyone


----------



## fuzzy butterfly

Hey hun glad your feeling a bit better. Heres to you continuing to get more n more well. Love n hugs


----------



## fuzzy butterfly

duh panda said:


> Hope everyone starts seeing better days as we move into the new year.  take care and rest up as needed & able!



Hi duh panda. Wishing the same for you hun . Take care love n hugs


----------



## ronroush7

Wishing the best for everyone in the new year.


----------



## Christi

Thanks mandy. Does any of you know some remedy for constipation


----------



## fuzzy butterfly

Same to you Ron. Hope them docs get you sorted out this year n asap too.love n hugs


----------



## fuzzy butterfly

Hi Christi would depend on wat u can tolarate. But u could try prune juice orange juice sometime chocolate can be laxative for some folks. or of course docs could give u something maybe x


----------



## Christi

Mandy he did give some meds to help constipation but does not seem to work still very constipated. Yogurt used to help but nothing now i just struggle to go. I want add all of you on my friends list but doesnt look like im managing lol


----------



## Christi

Ron i also wish you and everybody the best for the new year may we all be well this year


----------



## fuzzy butterfly

Aw hun try the juice n see unless u have already .lol. Il try to send a friends request to you n see if that works hun. Il have to fure up my tablet so it may take a few mins lol. Xxx


----------



## fuzzy butterfly

I have added you to my friends list now Christi. I use my phone a lot n it doesn't show as much info as my tablet. So I don't always see the msgs lol. I


----------



## Christi

Thanks mandy lol hugs xx i tried but nothing lol


----------



## Christi

I had orange juice , grape, apple lol now im trying to see for anything else i dont see prune juice in our supermarkets


----------



## fuzzy butterfly

It can be tricky sometimes it doesn't work properly. Lol. I have you showing up as my friend now on my friend list. I so I should be on yours but you may have to tick the box? I I'm not sure of things myself lol xx


----------



## fuzzy butterfly

Christi said:


> I had orange juice , grape, apple lol now im trying to see for anything else i dont see prune juice in our supermarkets


Ah OK can you eat the prunes themselves? X


----------



## Christi

yes i think they are in season now although i never tried it with this disease but i can see how it goes lol


----------



## Christi

I see you in my friend list thanks your a doll xx


----------



## fuzzy butterfly

Christi said:


> I see you in my friend list thanks your a doll xx


No worries love  the prunes ye give them a go but not too many at first just in case they don't agree with you. I don't want you to feel any worse hun :shifty-t: x


----------



## Christi

Dont need to worry i wont maybe 2 or something? I will keep you updated let me try that my stomach feels weird


----------



## fuzzy butterfly

OK good. Ye let me know how you get on. Do you know I have only just realized that you are in South Africa lol. I'm  a dozy mare I love the way we can talk from all over the world its great isn't it xx


----------



## Christi

Lol mandy sometimes one doesnt realize lol yes its amazing i have to agree


----------



## ronroush7

Except for getting dressed, I have spent the majority of the day in the bathroom.


----------



## fuzzy butterfly

Oh Ron mate im sorry you are having such a rough day. Love n hugs


----------



## ronroush7

Thanks so much, mandy


----------



## fuzzy butterfly

Ron your welcome love. Hope you have a better day tomorrow


----------



## Christi

Ron i hope you feel better soon


----------



## ronroush7

Thanks, Christii


----------



## fuzzy butterfly

My hips are really aching these last few days.  im lucky that achy joints are all i suffer from pain wise.


----------



## ronroush7

Sorry, Mandy.


----------



## fuzzy butterfly

Thanks Ron. Il be fine tho. I feel that im so lucky thats all i have to cope with compared to others. I remember how bad it is to be in a flare or just general crohns shite. Hope you are a bit better today mate


----------



## ronroush7

Thanks


----------



## Christi

Mandy i hope you feel better


----------



## Christi

Yoga did work with me while in flare im very much tender again today


----------



## ronroush7

I am sorry, Christi.


----------



## fuzzy butterfly

Thanks Christi. Hope you do to hun


----------



## Christi

Had horrible pain last night , not even  a walk did me good yesterday. Ron , Mandy i hope you feel better today


----------



## ronroush7

I hope both you are feeling well.


----------



## fuzzy butterfly

Aw christi sorry you are having a bad time. My hips still achy but im ok in general. Thanks 
Thanks Ron hope you are too.


----------



## ronroush7

Still having to spend long times in the bathroom but okay.


----------



## Christi

Aw mandy do you have something to take for that? Ron i am so sorry you still struggle. So i have follow up the 20th with GI now wonder whats he going to say if im still in flare coz tomorrow im tapering down again with pred


----------



## fuzzy butterfly

Im on painkillers all the time for all my joint pains. Usually its a very dull ache all the time. Just last few days hips been really quite painfull. I have a painrelief gell to apply on skin as i cant take ibruprofen,as it can upset my tummy  hoping it calms down again soon  Hope the taper goes ok hun


----------



## fuzzy butterfly

Oh Ron you n your bathroom really are well accquainted . Hope you feel better soon.


----------



## Christi

Mandy i also cant drink anything with codein in it , hope that gell works dont you have any pain meds like tramadol or something? Joint pain can be horrible. Yes tapering going well first week 6 pills then after 7 days 4pills then from tomorrow are 2 for 28 days. Im still comstipated and sore and i dont know what to expect in 2weeks with my GI he also stopped one of my meds for now


----------



## fuzzy butterfly

Ye i have tramadol paracetamol n co codemol. They take the edge off most of the time. 
Glad its going well so far hun. Fingers crossed it continues. Hope Gi has some help for you when you go. Going to see mine in march so il tell how it is n see what he says... hugs


----------



## Christi

hugs mandy i will you keep you updated. Happy the painkillers take some of the edge off. Prayers and support your way hugs


----------



## fuzzy butterfly

Thanks Christi . Prayers support n hugs for you too hun.


----------



## Christi

Had the fever again as usual and stomach tendernes.


----------



## ronroush7

I hope you are better real soon, Christi.


----------



## Christi

Thanks ron , hope you also feel better soon


----------



## fuzzy butterfly

Get well soon christi. Hugs


----------



## Christi

Thanks mandy hugs how are you feeling today?


----------



## fuzzy butterfly

Hi Christi. Thanks hun. Ye not to bad hips a little less painful today. . How are you hun ? Xxx


----------



## Christi

Mandy im happy that the pain settled down a bit. Im very tired and still sore , tapered down to two tabs of pred yesterday but all is weird since im on it and doesnt seem to help much i now wonder if surgery will have to do since it already spread and i still cant seem to shake of this symptoms


----------



## fuzzy butterfly

Hi hun ye surgery may be an option. Speak with your Gi n tell him everything and ask what options are inc surgery. Its was a last resort for me, as it should be really. wishing you well hun. Take care


----------



## ronroush7

Best to you, Christi.


----------



## Christi

Thanks ron and mandy. I will be talking to him on the 20th have allot of questions and concerns and new things that came up recently. Hugs to all


----------



## fuzzy butterfly

Iv just thought this thread seems to have turned into the Ron,Christi n Mandy show lol only us 3 posting of late.
Hope your both ok today. Love n hugs


----------



## ronroush7

Mandy, can you tell me how to post links on here?  Still having chronic diarrhea but okay.


----------



## fuzzy butterfly

Oh eck Ron im going to come over n have serioys words with your diarrhea mate.  im not sure some times if your say type in a something like www.crohnsandcolitis.uk.org it puts a line under it n you can then click on it and it takes you to the site. If thats the kund of link you mean. The line dosent always show till you sumbit the post you put it in . Im not the best person to ask lol. I do what i manage to do more by luck than management lol.


----------



## fuzzy butterfly

There its put a line under it. If you click it it shuold take u to their site. X


----------



## Christi

lol yes this is mandy, ron , christi show now lol seems we are the only ones on here lol laughing since i think about it that way lol. Im doing well mandy just the usual lol hope you are also well? Ron did you get some sleep?


----------



## fuzzy butterfly

Haha ye we've took over the world  well this tiny one on this thread lol. I was looking back on posts n duh panda was last one other than us 3 on the 29th dec lol.Glad your doing ok hun.
ye im not too bad just now, hip pain has nearly gone now just the odd twinge . Take care hun


----------



## ronroush7

Not enough but yes I did get a little sleep.  I called my GI and they found some active inflammation in my intestines.  I have to go on Entocort and see a specialist on the 24th of February.


----------



## fuzzy butterfly

Oh eck Ron. But at least u know whats going on n i hope the entocort works for you. Hugs n support


----------



## ronroush7

Back at you.


----------



## fuzzy butterfly

Ta mate . You take care n take it easy .


----------



## fuzzy butterfly

Hi christi im posting this here to see if it helps refresh ur posts hun as its been a couple of days since last one posted accordding to my fone.


----------



## Christi

I can see everything again now thanks mandy hugs


----------



## fuzzy butterfly

Cool glad its back on track hun. No worries christi . I no sometimes i want to check back a few days incase iv missed someone or something so im glad it ok now hun.  n hugs


----------



## Christi

Thanks mandy  waking up tired is another thing but waking up with stabbing pain is annoying


----------



## Christi

Yesterday i had so much pain, today i still have pain i still cant to much


----------



## fuzzy butterfly

Aw hun sorry your having such pain . Have you been or spoke to your doc to see if he can help you any more. Much love


----------



## Christi

Mandy not yet only seeing my doc next week and this week its therapy. Im now writing everything down for next week. Hugs to you my friend


----------



## fuzzy butterfly

Ah ok hun. Yep good plan dont leave anything out. Hit them with both barrels n tell them how it is ...dont let them fob you off hun. Love n hugs to you my friend. I pray you get the help you need.


----------



## Christi

Thanks mandy i will speaking allot next week and im going to ask about surgery to. I will let you know how it goes. Hope your joints are feeling better


----------



## fuzzy butterfly

Thanks christi. Ye they are not to bad at the mo . Less painful thank goodness. Ye check out all options inc surgery n see what they say. Best wishes hun .:hug:


----------



## Christi

Im so happy you feel better , thanks for your support my friend hugs


----------



## fuzzy butterfly

Ta hun tho im afraid to say they killing me now. Spent 2hrs waiting for a bus back from work in freezing cold n rain,due to many car accidents caused by black ice thro the day b4 rain came. Been home an hour n just thawing out lol.


----------



## Christi

have one hell of a headache


----------



## fuzzy butterfly

Sorry that you have a bad head hun. Hope it calms soon. Can you take anything for it?


----------



## Christi

I took 5 things already and nothing its really bad stabbing throbbing pain its in my neck now


----------



## Christi

I took 5 things already and nothing its really bad stabbing throbbing pain its in my neck now and only getting worse


----------



## It takes Guts

Sorry to hear you are having such a terrible day. It will get better. 

When I'm having good days I remind myself that bad days are round the corner and to enjoy it whilst I lasts. 

On the bad days I console myself that good days are on the way. 

Take care and feel better soon.


----------



## fuzzy butterfly

Oh hun maybe call your doctor if its getting worse. Hugs


----------



## Christi

Went to pharmacy its my bp and they gave me migrain pack which will kick in any moment


----------



## fuzzy butterfly

Aw right OK good hope its working. Rest n relax now hun.


----------



## Christi

Yes im in bed now waiting to fall asleep i hope this goes over. Thanks for the support mandy hugs to you  what else could go wrong lol


----------



## fuzzy butterfly

Have a good sleep hun. . Your most welcome  hugs n love


----------



## ronroush7

The first couple of days I thought the Entocort was helping but j am not sure now.


----------



## Christi

Still have a headache but its not yet as bad as last night


----------



## ronroush7

Just said a prayer, Christi.


----------



## Christi

Thanks ron my friend  im really feeling bad. How are you feeling?


----------



## ronroush7

My stomach is active.  I don't know if it will do good but I have been taking Gaviscom.


----------



## fuzzy butterfly

Christi sorry your head is still sore hun. Hope it improves today.
Ron hope it helps sorry you are having a rough time 
Hugs


----------



## Christi

Still have a headache and been sleeping the whole day and off to bed again im so very tired. Ron i hope your stomach settles down , thank you mandy. Prayers


----------



## fuzzy butterfly

Prayers for all hope you all feel better soon .:hug:


----------



## duh panda

So, so excited - finally with a Crohn's Colitis clinic and a GI that works on my level. Running tests to follow-up on everything that was screwy a year ago and hasn't been monitored well without a local GI willing to take me on till now. MRI and colonoscopy oh joy! Blood work came back in my more normal range - elevated white blood cell, decrease red blood cell, high inflammation but nutritional stuff like B12, Vit. C and Vit. D are all as they should be for the first time in ages! Plus, the doc is open to adjusting MTX dose to see if we can't keep the benefits without the weekly migraines. 2016 has been off to a productive start which is a nice place to get back into. Today, specifically, I'm bummed to be missing a great friend's wedding but hell, can't dance anyways so will just be celebrating from a distance.


----------



## ronroush7

Great


----------



## fuzzy butterfly

Hi Duh panda, so pleased that things are looking up for you here's to continued improvement :drink:
Also glad you have got a good Gi now hun :hug:


----------



## Christi

Sorry im being so quite but im not feeling to great , i hope everyones well. Hugs to all my friends im off to bed again


----------



## fuzzy butterfly

Hope you feel better soon Christi hugs..


----------



## ronroush7

Hope you feel well soon, Christi.


----------



## MoCo

Haven't had pain like this since just before I was diagnosed last February. Just started 6mp 1.5 weeks ago on top of the humira. I am experiencing major joint pain (more than usual) and yesterday started with this severe cramping. Sitting here crying and rocking like I used to do and not liking it. Tried my hot bath, just took some acetaminophen in hopes that it might take the edge off. Don't know what else I am supposed to do as this is the first time I have such pain again in almost a year. Guess I will call my GP tomorrow if no better.
Does anyone take fiber supplements? I have for years, but ran out unexpectedly ( I never used to be so disorganized!) and was wondering if it might have anything to do with the pain? I doubt it, but grasping at straws I guess.
Anyways, off to the heating pad I guess.


----------



## MoCo

Haven't had pain like this since just before I was diagnosed last February. Just started 6mp 1.5 weeks ago on top of the humira. I am experiencing major joint pain (more than usual) and yesterday started with this severe cramping. Sitting here crying and rocking like I used to do and not liking it. Tried my hot bath, just took some acetaminophen in hopes that it might take the edge off. Don't know what else I am supposed to do as this is the first time I have such pain again in almost a year. Guess I will call my GP tomorrow if no better.
Does anyone take fiber supplements? I have for years, but ran out unexpectedly ( I never used to be so disorganized!) and was wondering if it might have anything to do with the pain? I doubt it, but grasping at straws I guess.
Anyways, off to the heating pad I guess.


----------



## MoCo

oops, sorry. Pushed twice. Trying to figure out this site still.


----------



## fuzzy butterfly

So sorry that you are feeling poorly. I agree with ringing your doctor if you don't improve very soon. It may be that the med is not suiting you or just that you are having a flare for no other reason than your having one . Let us know how you get on, take care n best wishes


----------



## ronroush7

MoCo said:


> Haven't had pain like this since just before I was diagnosed last February. Just started 6mp 1.5 weeks ago on top of the humira. I am experiencing major joint pain (more than usual) and yesterday started with this severe cramping. Sitting here crying and rocking like I used to do and not liking it. Tried my hot bath, just took some acetaminophen in hopes that it might take the edge off. Don't know what else I am supposed to do as this is the first time I have such pain again in almost a year. Guess I will call my GP tomorrow if no better.
> Does anyone take fiber supplements? I have for years, but ran out unexpectedly ( I never used to be so disorganized!) and was wondering if it might have anything to do with the pain? I doubt it, but grasping at straws I guess.
> Anyways, off to the heating pad I guess.


Hope you feel better soon.


----------



## duh panda

MoCo said:


> Haven't had pain like this since just before I was diagnosed last February. Just started 6mp 1.5 weeks ago on top of the humira. I am experiencing major joint pain (more than usual) and yesterday started with this severe cramping. Sitting here crying and rocking like I used to do and not liking it. Tried my hot bath, just took some acetaminophen in hopes that it might take the edge off. Don't know what else I am supposed to do as this is the first time I have such pain again in almost a year. Guess I will call my GP tomorrow if no better.
> Does anyone take fiber supplements? I have for years, but ran out unexpectedly ( I never used to be so disorganized!) and was wondering if it might have anything to do with the pain? I doubt it, but grasping at straws I guess.
> Anyways, off to the heating pad I guess.


Moco, hope things improve quickly for you. 

It's not much but try finding something to distract you from the pain and not be focused on how much work it is to manage it right now. Your doc will be able to better help you figure out whether or not fiber supplements are helpful or if it's a side-effect of 6-MP as it builds up in the system. 

For me, a couple distractions that help keep me calm when pain hits hard apart from heating pad - music (classical, piano for me), using a pillow or stuffed animal to squeeze/ punch do whatever to in order to physically exert the frustrations over being in pain, practicing my breathing - usually I find just counting and trying to keep breaths even is more helpful then following a meditation or something similar. Engage others in helping - just a light back-rub or hand on my back usually helps keep me settled and from letting the pain rule. Chamomile tea usually help relax tense muscles a bit. Nothing to really take it away, but maybe help face it as needed until it passes.


----------



## ronroush7

Made a mistake yesterday eating a banana not completely ripe.


----------



## fuzzy butterfly

Oh Ron . Well that will learn you eh !!!. No more unripe bananas young man


----------



## Christi

Still no treatment plan just being put on antibiotics and finishing my pred , i had so many questions and things bothering me and i still cant get nothing sorted , had to see another doc as mine wasnt there


----------



## fuzzy butterfly

Oh Christi sorry you have not got really any further with it hun. Hope the antibiotics help hun.  :hug:


----------



## Christi

I had been on the same antibiotics before ill see how it goes i need to see my doc. Im not feeling well my body cant handle it


----------



## fuzzy butterfly

Aw my darling. Sorry you are having a bad time . Make another appointment with your own doc asap. Hope you feel better soon hun :hug:


----------



## Christi

Thanks mandy i cant urinate dont know why i feel the urge to go bit nothing i have to strain to get something out and takes aboit half an hour . hugs


----------



## Christi

Im also wondering what fat stranding are? My ct showed active crohns and fat stranding. Sorry for my spelling my yes are blurry coz im so tired and been sleeping allot


----------



## fuzzy butterfly

I think fat stranding has something to do with the inflamation process . Im not sure , so maybe google it n check it out hun. Have you possibly got a urinary infection ,it can cause that feeling of wanting to go.  Dont worry on the spelling chic.


----------



## Christi

No urine infection that i can recall and no pain during urination when i manage to empty


----------



## fuzzy butterfly

Ah ok hun. Not sure then sorry but have a word with your doc. He may have an answer for you chic  :hug:


----------



## FightforLauren

Stress and soda. some of the worst stuff for crohn's


----------



## teeny5

Drank a beer and a glass of wine last night, stupid. Feel awful today. I haven't been having issues and have had that before with no issues. Don't know why I feel so bad this time. Frustrated.


----------



## fuzzy butterfly

Hopefully it was just an unlucky episode . Hope you feel better soon


----------



## duh panda

Looks like it's been some time since anyone's posted on this thread so I thought I'd stir things up a bit.

Today I am feeling overheated. I had grown so used to the pacific northwest and the lack of sun/ heat that 55 degree weather is now TOO hot in February. Recouping from a colonoscopy - easily the best one in years. I keep looking at my pictures like *damn, that's one fine looking colon all pink like in its healthiness". Small bowel is being a bit slower in responding but is also looking much improved from a year ago.

Hope everyone has a lovely Valentine's day this weekend and shares the love with those in their life!  <3


----------



## ronroush7

The last couple of days I have had to visit the bathroom a lot.


----------



## Christi

I went for therapy yesterday and also saw my psyciatrist, they took blood to test for everything from my kidneys to vitamins as they want to start me on new and stronger meds as these are not working, changed the meds for sleeping also. My tummy are not to well and vomoting now.


----------



## ronroush7

Christi said:


> I went for therapy yesterday and also saw my psyciatrist, they took blood to test for everything from my kidneys to vitamins as they want to start me on new and stronger meds as these are not working, changed the meds for sleeping also. My tummy are not to well and vomoting now.


I am so sorry , Christi.


----------



## duh panda

Christi & Ron,

Sorry to hear things are a bit screwy at the moment. 

Hope the guts see better days, Ron. There are far better places to see and be then cooped up in the bathroom... hopefully you've got some good puzzle books or entertainment material to help keep ya sane. 

Also hope med changes settle soon for you Christi and level out. I know med changes in my world means upheaval on all fronts and it's always a turbulent, stress-filled time.


----------



## Eridon2002

Duh_panda-Glad to hear you've got a good looking colon! It's always good to get positive results after a colonoscopy 

Christi-I hope whatever new meds they put you on helps and helps fast!


----------



## ronroush7

Should I invest in some OTC anti-diarrhea medicine?


----------



## ronroush7

Imodium.  Couldn't think of the word earlier.


----------



## Susan2

ronroush7 said:


> Should I invest in some OTC anti-diarrhea medicine?


It's worth looking around for generic or cheaper versions, with the same ingredients as Imodium. I use a lot of the stuff and, here in Australia, I get a tablet version called "Diareze"which is much cheaper.


----------



## ronroush7

Thanks


----------



## teeny5

Tired, tired, tired. Just feel so tired today...don't know why. :yfrown:


----------



## fuzzy butterfly

Duh panda glad your colon is sparkling at the mo. Good news hun  Ron i think imodium is a good plan, i use similar all the time n does help.
Christi hope the meds change helps get you feeling much better. 
Eridon hope you are doing well  
Love n hugs to all


----------



## ronroush7

Thanks , Mandy.  Hope you are well.


----------



## fuzzy butterfly

Im ok thanks Ron. Weary as per usual but not to bad otherwise. I am in work today then i have 9days off ,i can really do with the rest iv worked solid since last sept. So due some me time i think . 
Susan2 is right look for the cheapest generic alternative ask at your chemist, they will advise you  on a good cheaper version. Take care my friend


----------



## ronroush7

You too


----------



## Christi

Thanks everyone. im still vomiting and im vomiting all my food out. I dont feel to well


----------



## ronroush7

What are they saying or prescribing?


----------



## Christi

Dont know yet ron i will only know in 2weeks and only april im seeing my gi


----------



## ronroush7

Hoping the best for you.


----------



## duh panda

Fissures are a literal pain in the ass today. I expected this what with deciding to eat several foods in the past 48 hours that I generally avoid/ save for special occasions. Smart move was to stick to one, but I'm all in when it comes to life soo... yeah and now I'm just feeling sassy about it. But the kicker is... when the fissures are active I get to bump up my greenery/ fiber a bit until they settle.


----------



## Christi

So i went to my GI today started pred again its for 2months, bp meds , nausea meds, syrup for stomach as i cant go, still on my normal meds also. Have to be back in April. Made an appointment at internal meds they want to see me in July they picked up something i dont know what. Tomorrow its psyciatrist starting new meds there also. My blood work looks normal so many test im just tired for all these test ughhh


----------



## Christi

blood pressure today is 165 over 103 and pulse 109


----------



## ronroush7

Wish you the best


----------



## Christi

Thanks ron ill update again tomorrow after my appointment


----------



## fuzzy butterfly

Aw hun it's a nightmare isn't it, but necessary to get you as well as possible. Hang in there hun big hugs n love to you Christi


----------



## Christi

So the spyciatrist could not start me on new meds coz all my blood were rejected and had to do the process all over again


----------



## ronroush7

I am sorry.  Hope they get it done quickly.


----------



## Christi

I have to back in a month again both my arms are blue they cant find veins anymore one arm were only air ughhh i hate this every appoimtment are test all over again if it could only come to a point now. I just cant any more next week its hosp again. I just feel like giving up but i know i cant


----------



## fuzzy butterfly

Hugs christi. Hang in there hun .


----------



## ronroush7

Bowels are active today


----------



## Christi

Ron hope you feel better soon


----------



## Christi

Depressed and sore. Bp still high and the headaches makes me mad i cant take this anymore


----------



## ronroush7

I am sorry, Christi.  Don't give up.  Keep pressing until you get an answer.  You have lots of support here.


----------



## fuzzy butterfly

Sending big big hugs girl. Also lots of love n support. You are one tough cookie dont crumble now hun.


----------



## duh panda

Sending support and all that good stuff your way Christi <3 

Last couple days have been, erratic. Met with doc Monday and am thinking of remission as a legit potential for my future for the first time in ages. Surgery as a possibility for treating is officially, completely back off the table and I have been riding that high all week. Its a bit unnerving to allow all that hope back in, I don't want to be closer then I've ever been just to see it slip back away but I'm excited for the possibility too. 

Getting to see my partner's reaction to hearing excellent medical news for the first time in the 7 years he has known me for - just no words for it other then gratitude and pure joy. I am so thankful for him and his level head, cuz I know mine has been scrambled ever since Monday as I'm trying to process this possibility as a part of my reality.


----------



## ronroush7

My bm is slow coming up out.  I went back to bed this morning


----------



## sagette

Long week and feeling it. I have an appointment next week and I need to speak to my doctor regarding my fistula. It's painful and gross. When I asked for a prescription cream the last time he refused. Why I have no idea, but I'm going to push for it this time. The OTC stuff just irritates everything and makes it worse.


----------



## ronroush7

You pay him, sagette.  You need some answers.


----------



## fuzzy butterfly

Hey Duh panda, that is brilliant news hun, I hope that this possibility becomes reality. Good luck and fingers crossed 

Sagette hope the doctor helps you feel better soon, sending hugs 

Ron hope you feel better soon, hugs


----------



## Lisa

Nagging headache for the last two days......Ugh......


----------



## ronroush7

I am sorry, Lisa.


----------



## duh panda

Did not sleep well - some drunk girl broke in, tried to climb into bed w/ my partner and I then apologized profusely when asked wth she was doing - only to leave behind a nice pair of boots and beat up phone... the boots aren't even in my size. It's going to be a long monday!


----------



## ronroush7

duh panda said:


> Did not sleep well - some drunk girl broke in, tried to climb into bed w/ my partner and I then apologized profusely when asked wth she was doing - only to leave behind a nice pair of boots and beat up phone... the boots aren't even in my size. It's going to be a long monday!


I am so sorry.  Hope the rest of the day is better.


----------



## sagette

Knock on wood, I'm feeling pretty good today. I started my "after prednisone" diet yesterday though, so we'll see how I'm doing after a few days.


----------



## sagette

duh panda said:


> Did not sleep well - some drunk girl broke in, tried to climb into bed w/ my partner and I then apologized profusely when asked wth she was doing - only to leave behind a nice pair of boots and beat up phone... the boots aren't even in my size. It's going to be a long monday!



Oh my!


----------



## fuzzy butterfly

Omg duh, how that must have shook u up.:hug:
Shame about the boots tho  xx

Sagette  glad your feeling good. Hope you do well with the diet. Best wishes


----------



## duh panda

fuzzy butterfly said:


> Omg duh, how that must have shook u up.:hug:
> Shame about the boots tho  xx]
> 
> I was pretty dazed and confused at first, but more shook up as the day went on. Was so disappointed the boots didn't fit. Feeling much better about it today - so glad the 29th is only every 4 years, because I think it's my equivalent to Friday the 13th.
> 
> Hope you're well! :hug:


----------



## fuzzy butterfly

Hi duh . Im doing ok , i think, who blooming knows with this disease, 
Glad you are feeling a bit more settled after that ordeal hun. Take care n keep as well as you can


----------



## duh panda

Okay is better then terrible  Hope you take care too and keep as well as able.


----------



## fuzzy butterfly

True. Ta duh i will do my best. :hug:


----------



## ronroush7

Mild abdominal pain


----------



## fuzzy butterfly

Hope it goes away soon Ron take it easy n take care hun


----------



## Christi

Ron hope you feel better soon. I still have fevers ughhh it wont stop my arm is sore since yesterday but feels worse today, still have pain and what not


----------



## ronroush7

Hope you feel better soon


----------



## fuzzy butterfly

Aw christi . I wish you could get to feel much better hun. I have read somewhere that fevers can be a part of crohns. So that maybe why you can shake them. Google fevers and crohns n see just what it says. 
Love Mandy


----------



## Christi

had pain during the night , im sore this morning and tender to touch even lifting my leg are sore. Eating last night a few bites i have to run to the bathroom


----------



## ronroush7

Christi said:


> had pain during the night , im sore this morning and tender to touch even lifting my leg are sore. Eating last night a few bites i have to run to the bathroom


Hope you feel better soon, Christi


----------



## Christi

Thanks my friend  hope your doing well


----------



## ronroush7

I am getting ready to go on Humira.


----------



## Christi

When are you starting


----------



## ronroush7

I have to get a tuberculosis shot and sign a paper first.


----------



## Christi

Aw Ron i wish you the best my friend please let us know how it went.


----------



## ronroush7

Will do.  I am not sure how long it takes to take effect.


----------



## Christi

I also dont know , is infusion or injection? I dont know know how humira works at all. Its a biologic?


----------



## ronroush7

It is a biologic.   I have to have a nurse come out and give it to me.


----------



## Bufford

Ron, nothing ventured nothing gained unless one is willing to try.  I hope this one goes better for you than the Remicade.  Remicade ruined my winter, was at my remote cabin for the afternoon, heart racing, out breath together with joint pain in my spine.  All these things I used to enjoy doing I simply want to avoid now.  Frustrating, but one must keep on going.


----------



## fuzzy butterfly

Love n hugs to all  feel better soon :hug:


----------



## Christi

Any ideas on how to feel better my stomach are so sore and im so swollen feel like exploding took lactulose syrup now and been to toilet allot today im not feeling well


----------



## ronroush7

Christi, I hope you feel better soon.  Bufford, Remicade caused a lesion in my scalp which I eventually had to have surgery for.


----------



## fuzzy butterfly

Aw christi. You are having a rough time hun. Im sorry you cant get some relief from the meds. Big hugs . I really wish i could help you feel better . Them docs need to pull their fingers out n get you sorted out. So you can get some relief. So annoyed they arent helping you enough hun .


----------



## Christi

Thanks Ron , Mandy i dont know what to do anymore i didnt get much sleep im in pain im so swelled up its not even funny , i cant even bent its sore. I cant get relieve from my meds and im still on pred it doesnt help nothing helps i have so many meds to drink in the morning why doesnt it help. Im so sorry for venting but all of this is making me more depressed. By bum are so sore from going im starting to bleed. I dont want to get admited again. Why cant i just live a normal life , why do i have to suffer like this


----------



## ronroush7

Christi, I am so sorry.  The doctors need to find the right meds for you.


----------



## Christi

Ron i dont know when thats going to happen , i just want this to end i cant live like this and everyday i try not get myself down but its only getting worse i dont feel better today. Cant they see the meds are not working , i need to see my other doctor. Ughhhh now im crying again so sorry for venting


----------



## ronroush7

No problem.  Can you get a second opinion?


----------



## fuzzy butterfly

Hi Christi. Please dont be sorry for venting hun,its no bloody wonder you are ...you are having a really bad time. 
  Idont know if you have any cream you can use on your bum ie sudocreme,vasaline or similar you can use inbetween going to the loo,to help the soreness. Do you pass wind regularly as im wondering if the bloating maybe related to that if you dont.
 I will see if i can find out what other things could be causing the bloating,and let you know if i come up with anything to explain it and help you.
Im so sorry that you are going thro this hun. Love n hugs :hug:


----------



## Christi

Mandy im now having diarrhea , yes i have some vaseline that i could use. I dont know why im so swelled when having diarrhea and going so much. And the pain is horrible took some pain killers again but not helping. Its useless taking anything. Ron i saw another doc last month as the one i normally see where busy with scopes


----------



## Christi

Mandy yes i do pass wind to often and i havent been able to stop since this all started


----------



## ronroush7

I am do sorry.


----------



## fuzzy butterfly

Hi ok hun il see what i can find out for you. Im getting ready for work now,but will get back to you as soon as i can. Hope i can find what might be causing this for you. :hug:


----------



## Christi

Thank you Mandy


----------



## fuzzy butterfly

You are most welcome love


----------



## duh panda

Christi - So sorry to see things are still a major struggle right now and you're not seeing any relief. When I'm really bloated and things are going haywire and struggling with active fissures and bleeding after each b.m. I have found coconut oil helpful (can be formed into a suppository of sorts and inserted which coats the rectum and helped to ease bm's some). Also, if you have not already, switching to using baby wipes instead of TP or even taking the time for a sitz bath after may really help soothe things as much as they can be soothed. It won't take any of it away, but hopefully might help make the days a bit more bearable until docs stop dragging their feet and can get you onto a treatment plan that works better for you. 

When bloating is a major issue for me I find diet manipulation an effective means of reducing the strain it places on the gut. A gassy gut is agony with active Crohn's. It may be worth looking into what are gas causing foods and try cutting out any you may be currently eating to potentially reduce discomfort and pain levels. 

Other then that - have they looked into a possible bacterial overgrowth in the small intestine? I'd never had it mentioned to me as a potential cause for bloating, pain and IBD symptoms until a new GI I just started working with the past few months. I didn't ask her for details, because my focus is on balancing out meds first, but it might be worth bringing up with your GI and testing for. 

End of last week was spent in ER/ urgent care being infused with antibiotics, fluids and anti-inflammatories for a sneaky sneaky infection that made its way into my bladder tissues. I'm still a bit put-off by how far the infection got without showing any symptoms - no pain, no urgency, just a bit of an uptick in fatigue over the last week. Then BAM so much blood it was impossible to ignore something wasn't right. But, proud of my partner and I for going in and seeking medical help in the form of IV to speed things along in getting on top of it. A small consolation prize to experience a moment of maturity  I'm hoping to get out for a walk today, but am utterly exhausted still so it may be another nap, Parks & Rec watching, pajama wearing day here.


----------



## fuzzy butterfly

Christi said:


> Thank you Mandy


Hi Christi, I have Googled, what causes a swollen belly with crohn's disease. If you Google that and scroll down to the 3rd one down to www.emaxhealth.com. It may be able to help you suss out why and how to help you with it. Hope its of use to you hun. :heart:
Oh it's created a link so just press on the highlighted bit. I it should take you there. :thumleft:. I just tried it but don't take you to right page so stick with what I first said. Xx


----------



## Christi

Mandy thank you it was helpfull. Duh panda im sorry you are struggling now. I did cut out some food. They didnt check for any infection in my intestines. I dont know what the zits bath is? I have cream and vaseline that does help soothe my bum after bm.


----------



## fuzzy butterfly

Hi Christi, I hope it gave you some ideas as to what might be going on hun, and maybe some things that you can ask your doctor about, to see if you can get some well deserved relief. 
Love and hugs :hug:


----------



## duh panda

Christi said:


> Mandy thank you it was helpfull. Duh panda im sorry you are struggling now. I did cut out some food. They didnt check for any infection in my intestines. I dont know what the zits bath is? I have cream and vaseline that does help soothe my bum after bm.


Sitz bath is a shallow (2-3 inch), warm bath without any irritants like soap or bubble bath. Usually not used for longer then 10-15 minutes at a time. It can be a bit inconvenient to always be getting undressed/ redressed, but there are some bowls/ tubs marketed that fit over the toilet and can make the whole process easier. The idea is to boost blood flow to traumatized tissue to speed up healing, as well as reducing inflammation and irritation.


----------



## ronroush7

duh panda said:


> Sitz bath is a shallow (2-3 inch), warm bath without any irritants like soap or bubble bath. Usually not used for longer then 10-15 minutes at a time. It can be a bit inconvenient to always be getting undressed/ redressed, but there are some bowls/ tubs marketed that fit over the toilet and can make the whole process easier. The idea is to boost blood flow to traumatized tissue to speed up healing, as well as reducing inflammation and irritation.


I usually did it on the toilet .  The warm water was nice.


----------



## Christi

Mandy it was of great help and i will mention a few things at my doctor. So its basic warm water without anything. I also drink some epsom salt in my coffee just the point of a knife. I will try the zits bath


----------



## fuzzy butterfly

Nice one christi. Hope he can get things under control hun.


----------



## Christi

They say its good for the gut  lol


----------



## fuzzy butterfly

Im feeling like crap today. Been up being sick since 4am and the runs at the same time. Ucky !! Hope its just a bug or food poisoning.Feel shaky n weak. Dont want it to be crohns starting to kick off again. I dont think it is but ??. Going to rest n not eat solids today n see how i go...
Hope everyone else has as good a day as you can. Love n best wishes.


----------



## Eridon2002

I hope it's just a bug and you get better soon!


----------



## ronroush7

Hope you get over it soon, Mandy.  Wish the best for everyone today.


----------



## duh panda

Aw Mandy, hope it passes and is just a bug! 

Thinking of all you magnificent courageous people today, and hoping the best for the cards you're holding. 

Feeling okay - not great, but had a follow up this morning and infections are responding well to treatments so should be back to seeing a bit more energy soon.


----------



## fuzzy butterfly

Hi folks, just to say I'm feeling somewhat better than before. I am thinking it might have been food poisoning, from what I don't know but I've sure purged it out lol. 
Thanks for the support and wish you all the very best of everything. You all so deserve it. Love n hugs 
I've just realized that today is 2 yrs since I had my ileostomy done, mmmmmm not quite how I'd have liked to celebrate that but anyhow :drink::dusty::dance::highfive: 
Still gotta celebrate 2 yrs with out any pain in the guts right!!


----------



## ronroush7

I am grateful that you are not having any pain in the gut, Mandy.  My father just got moved up to memory care in the nursing home he is in.  All three of his kids are chipping in the price until his military benefits kick in.  There is a gentleman who has taken my dad in under his wings and knocked 600 dollars off the cost.


----------



## miarosa

Hello everyone my name is Mia and have recently been diagnosed with Crohn's I first starting having severe symptoms back in August, it later turned out that I had perianal abscesses and a fistula formation after 4 operations a seton was finally put in place and is still in place, i had yet to be diagnosed when this happened, I saw various surgeons and doctors and Crohn's was eventually suggested, they did all the procedures to see if I had Crohn's such as sigmoidoscopy and Mir scans, and was diagnosed January this year, it has been really overwhelming to deal with, I have tried to remain positive which has worked very well for me and I have not dwelt too much on having a 'life long disease' however after having an Mri recently it has shown that the inflammation has got worse in my small intestine and colon, I am currently taking 75mg of azathioprine and 9mg of the budesonide steroid and have been told that I am going to have to change my treatment to a biological one such as infliximab, I have heard very good things about this drug and am hoping it will work well for, I have had to quit school and my job as Crohn's has completely taken up all my time. I am not really sure why I am writing this I am just hoping for some support from people who really understand what I am going through as my parents can only understand to a certain extent, although they are very supportive which I am thankful for, I would love some replies just so I feel I am not alone which I sometimes stuggle with

Thanks in advance Mia x


----------



## ronroush7

Hi.  You will find lots of support  here.  I am glad you are being positivet. I hope you have great success with infliximab.


----------



## fuzzy butterfly

ronroush7 said:


> I am grateful that you are not having any pain in the gut, Mandy.  My father just got moved up to memory care in the nursing home he is in.  All three of his kids are chipping in the price until his military benefits kick in.  There is a gentleman who has taken my dad in under his wings and knocked 600 dollars off the cost.


Hi Ron.Thanks mate. Im doing ok so far today. So going in to work. God bless that gentleman what a star he is. That must be a great help to you and your family.


----------



## ronroush7

Yes it is and I am glad you are feeling better.


----------



## fuzzy butterfly

miarosa said:


> Hello everyone my name is Mia and have recently been diagnosed with Crohn's I first starting having severe symptoms back in August, it later turned out that I had perianal abscesses and a fistula formation after 4 operations a seton was finally put in place and is still in place, i had yet to be diagnosed when this happened, I saw various surgeons and doctors and Crohn's was eventually suggested, they did all the procedures to see if I had Crohn's such as sigmoidoscopy and Mir scans, and was diagnosed January this year, it has been really overwhelming to deal with, I have tried to remain positive which has worked very well for me and I have not dwelt too much on having a 'life long disease' however after having an Mri recently it has shown that the inflammation has got worse in my small intestine and colon, I am currently taking 75mg of azathioprine and 9mg of the budesonide steroid and have been told that I am going to have to change my treatment to a biological one such as infliximab, I have heard very good things about this drug and am hoping it will work well for, I have had to quit school and my job as Crohn's has completely taken up all my time. I am not really sure why I am writing this I am just hoping for some support from people who really understand what I am going through as my parents can only understand to a certain extent, although they are very supportive which I am thankful for, I would love some replies just so I feel I am not alone which I sometimes stuggle with
> 
> Thanks in advance Mia x


Hi and welcome Miarosa. Sorry for your need to be here tho. I hope the infliximab does the trick for you.It really is good if its what suits you. I was on it for a while but it didnt work for me,typical of my luck...most people do very well on it. 
Best wishes and please let us know how you get on. Take care


----------



## Christi

Hi mandy im sorry you are sick but im also glad you feel better and its nothing in the gut sorry i didnt see this earlier . duh panda im happy the meds are working and that you will be up and running in no time and everyday goes better. Ron im happy that there is someone that could help it makes things easier for you and your family. Mia welcome to the forum you will find allot of support here as we all understand. Support to all my friend hugs


----------



## ronroush7

Tired


----------



## fuzzy butterfly

Thanks Christi. ye only one day of it thank goodness. I hate being sick. I can handle aches pains n the runs but sick na i dont like it at all. 
Hope you are doing better my lovely. 

Ron i feel you there mate. Im blooming knackered today. Yesterday took it outa me somewhat!! 
Hope you get to rest up n recharge your batteries my friend. 
Love n hugs to all my friends here :ghug:


----------



## ronroush7

Love to all.


----------



## Christi

Im very happy Mandy being sick is a horror of its own. Im doing the best i can feel a little better but im still sore. I read your son got engaged and i just want to say congratulations  im so happy for you and that there will be baby soon


----------



## fuzzy butterfly

Hi my sweetheart. Thank you so much for the congratulations. I cant wait 
I so glad you are feeling a bit better and hope you continue to do so. You really do deserve a break from all the agony. Im praying that things get much better for you hun.


----------



## sagette

Feeling okay. Just wish I wasn't so beat by the end of the week that I had some pep when Saturday rolls around.


----------



## zHassanz

I'm feeling horrible, and I have got an exam tomorrow for which I'm unable to study because of the pain. :/


----------



## rcmacdo

I'm not feeling too well today. Apparently the prednisone has made it entirely out of my system, and my guts don't seem too happy. I was already having issues with constipation while prednisone was doing its thing. (Had quite a few other side effects like feeling jittery and tired at the same time...) So, my GI suggested I use a certain laxative to get over the constipation as the prednisone was slowly making its way out. It didn't really work for about 9 days, and then suddenly I felt the pain come back on Monday. Along with some success, but now it's turning to diarrhea again. (And, a lot more often.) Lovely. I kind of forgot about the pain until now. It's also making me feel weak and exhausted all the time. I was hoping to keep up my 2-mile walks I had finally gotten back to, but I feel too tired right now. Also, doesn't help I got into an argument last night with my parent. That added more stress. I have to do a couple of tests soon to see if the prednisone helped in absorbing azathioprine any. I also went down in dosage of azathioprine just as I started pred. So, it's hitting me harder with that, as well. My system apparently can't handle the dose that my GI wanted me at, that's kind of why I tried pred for it. Anyways, my GI's expecting it didn't work very well. Once the results come back, and they come out the way she thinks it will, she wants me to move onto humira or remicade. I'm really nervous about that. The scariness of this whole thing seems to be coming back for me. (Not as bad as when I didn't know what it was, at least.) I hope I can get into remission soon. 

Anyways, I'm also still excited about my 2nd novel being published at the beginning of this month, and hope it'll become successful. Already had a glowing review of it recently. That was awesome to read. I seem to be losing a lot of weight, but am happy with it unless I become underweight. I've lost about 5 pant sizes since my heaviest (not all of that was because of Crohn's), and am now in the 'normal' section. So, I have some good things happening as well.


----------



## ronroush7

Sorry about your physical situation.  Great about your novel.


----------



## fuzzy butterfly

Hi sorry you are having a rough time right now, hopefully you will soon be back on track. Getting the right meds for you can be tricky, so hang in there. 
That is great news about your novel, I really hope it does well for you. 
Best wishes


----------



## ronroush7

Right now, I feel better than yesterday.


----------



## fuzzy butterfly

Glad you are feeling better today Ron. Hope it continues my friend


----------



## ronroush7

Physically, I am better.  I am concerned about my father.  His Alzheimer's is getting worse.


----------



## fuzzy butterfly

Aw Ron,i feel for you there. Its a very hard thing to watch happen to a parent. Im sending big hugs and lots of love your way. 
May the Lord help you through with all things.
Love Mandy


----------



## ronroush7

Thanks.


----------



## JaimeM

So decided to limit my sugar and bread intake, haven't eaten greasy food in awhile.. But have noticed a big difference in how I feel. I don't feel nearly fatigued. I gave up caffeine and my snacking in the evening.. If I do snack I have something small. It's really made a difference.. I've also found that I absolutely love sauteed zucchini. lol. who knew.


----------



## ronroush7

Happy for you


----------



## Eridon2002

Glad you're feeling better Jaime!  I love zucchini. I would shred zucchini, sautee it then add eggs and make a frittata.  During the summer when my garden is going I would have fresh tomatoes to add as well.  Unfortunately due to the surgeries I won't be doing a big garden this year.  Just some herbs and a few tomato plants.  Maybe I'll do some green beans too...yum


----------



## JaimeM

I love when it's time to start planting the garden.. Last year my garden got forgotten since I got sick shortly after I planted it.. This year one of my good friends and I are sharing my garden space. So she will help if I'm not feeling up to it. However it feels like garden season won't be for forever.. We just had a bad snow storm come through yesterday, we have a few inches of snow to show for it and it's really cold out :/..

I've been eating way healthier and I have a little more pain than i did when I ate the low residue, but I feel better otherwise. So I'd rather have pain than the diarrhea and fatigue.

How are you feeling Eridon? Still doing ok post surgery?


----------



## Eridon2002

We have been having unseasonable warm weather.  A high of 72 deg last weekend.  I don't think we are going to get another frost so I went ahead and planted some seeds for Bell peppers, green bean, cilantro and Basil.  It's good you have a friend that can help out; gardening can take a lot of work.  But hopefully you will feel great this summer and won't need the help :ysmile:

It's sad that some of the healthy higher residue foods give us pain.  I would love to eat broccoli and onions again but they hurt way too much. It does help if I cook the crap out of a high fiber food(like make a stew in the crockpot and let it go for 8 hours).  I also have found that I can eat lentils if they have been soaked for 24 hours or sprouted.  This breaks down some of the enzyme inhibitors and phytic acid.

I'm actually surprised at how well I've been doing post surgery(I thought I'd be further behind energy and healing-wise).  I have been walking on the treadmill for  1 hr and 40min everyday at 3.5mph. I'm back to work and will start up traveling for my job next week (Wohoo Iowa city!).  Getting used to the bag but I had to do 2 bag changes because of leaks yesterday and I can see the skin separating from the stoma.  So that has been fun to deal with :voodoo:  I have an appointment with the surgeon to do an enema/dye test to make sure there is no leaking at the surgery join.  If all looks good then I may get to have the reversal mid May.  Little scared about that because I'm hoping that I stay feeling well after all the plumbing is hooked up.


----------



## ronroush7

Eridon2002 said:


> We have been having unseasonable warm weather.  A high of 72 deg last weekend.  I don't think we are going to get another frost so I went ahead and planted some seeds for Bell peppers, green bean, cilantro and Basil.  It's good you have a friend that can help out; gardening can take a lot of work.  But hopefully you will feel great this summer and won't need the help :ysmile:
> 
> It's sad that some of the healthy higher residue foods give us pain.  I would love to eat broccoli and onions again but they hurt way too much. It does help if I cook the crap out of a high fiber food(like make a stew in the crockpot and let it go for 8 hours).  I also have found that I can eat lentils if they have been soaked for 24 hours or sprouted.  This breaks down some of the enzyme inhibitors and phytic acid.
> 
> I'm actually surprised at how well I've been doing post surgery(I thought I'd be further behind energy and healing-wise).  I have been walking on the treadmill for  1 hr and 40min everyday at 3.5mph. I'm back to work and will start up traveling for my job next week (Wohoo Iowa city!).  Getting used to the bag but I had to do 2 bag changes because of leaks yesterday and I can see the skin separating from the stoma.  So that has been fun to deal with :voodoo:  I have an appointment with the surgeon to do an enema/dye test to make sure there is no leaking at the surgery join.  If all looks good then I may get to have the reversal mid May.  Little scared about that because I'm hoping that I stay feeling well after all the plumbing is hooked up.


Wishing the best for you


----------



## JaimeM

Glad to hear things are going fairly well. That sucks about the leaking but at least you're feeling good, so it's sort of worth it.

I'm pretty new to having to alter my diet so I'm still learning things that work and don't work.. My husband is a terrible eater so I've had to cook something different for myself almost every night. lol. I didn't think about soaking lentils.. I might have to try that. I didn't do very well with eating the last few days (we have a friend getting married and work has been crazy, so I haven't had a lot of time for meal prep) Anyway i feel kinda junky today, but that might be the azathioprine starting to kick in too i suppose. I've heard it can make you feel like you have the stomach flu, which is kinda how I feel.


----------



## Christi

Im still in pain and i dont know what this joint thing is but i find that my one knee hurts when im trying to walk and last time i could not a kettle or even a cup as my hand were pretty sore holding anything. Last night i were bleeding. Wish its April already to see my GI again. Tired allot but struggle to sleep at night


----------



## ronroush7

I am so sorry, Christi.  Can you call your doctor's office and ask if they can get you in earlier if there is a cancellation?


----------



## Christi

i can do that as they said if somethings wrong that i could phone but my appointment is on the 13th and im just trying to hold up till then. Next week i have an appointment with my psyciatrist and will be getting all my blood test as they tested for everything and just hope it didnt reject again as i have to start new meds. My appointment at internal meds are still so far away and still trying to figure out what i must go for as she wrote 2 things but i cant see what it is and what they picked up and whats wrong. So many doctors and still no outcome ughhh


----------



## ronroush7

Sotty


----------



## Eridon2002

Hope you get some relief soon Christi. :hug:


----------



## rcmacdo

Today, I feel kind of stuck and scared. I emailed my GI yesterday about my symptoms. They seem to be getting worse. My GI immediately emailed me back. She sounded very worried. She wants me to do the blood and stool test (that I've been avoiding for a while) right away. I'm not sure if I'll be able to today, and the next possible day is Monday. She wanted to make an 'urgent' appointment to see me. I can't really have an appointment sooner than the one I already made last week. (For April 4th.) She wants to prescribe me more prednisone in the meantime. Not only can I not pay for it yet, but I think pred was partly to blame for my constipation problem before. She said if it gets much worse, I have to go to urgent care. Urgent care also has a copay...I'm not exactly sure if I'd be able to do these things before the end of the month, anyways. Plus, not to mention, I'm running out of my other meds. Sorry for ranting so much. I don't think I've been this nervous/scared of it since August.


----------



## ronroush7

Half of the time, I feerl like I have to go to the bathroom but can't go.  I hope when I get started on the Humira that it will help.  I have been having random pain in my lower back.  I went to the chiropractor.  It helped for a little while and then a few minutes ago I started hurting for a few seconds again.


----------



## duh panda

!@#$@%#$%! <-- That is how I'm feeling today. And grumpy over feeling like getting stabbed repeatedly in the bum all day long from things that won't resolve with meds and aren't easily treated. 

Nothing is healing like it should. My bones feel like they're on fire. I keep expecting to bounce back in 2-3 weeks following infections or every day illness, but it's not happening. More double the time just to manage everything, then more time for energy to come back. I'm burnt out on the chronic symptoms and just re-injuring joints and waiting for the appointments that actually deal with that to come about.


----------



## ronroush7

duh panda said:


> !@#$@%#$%! <-- That is how I'm feeling today. And grumpy over feeling like getting stabbed repeatedly in the bum all day long from things that won't resolve with meds and aren't easily treated.
> 
> Nothing is healing like it should. My bones feel like they're on fire. I keep expecting to bounce back in 2-3 weeks following infections or every day illness, but it's not happening. More double the time just to manage everything, then more time for energy to come back. I'm burnt out on the chronic symptoms and just re-injuring joints and waiting for the appointments that actually deal with that to come about.


I hope you feel better soon


----------



## Christi

I cant sleep its now already half past one in the morning ughhh


----------



## ronroush7

Prayers


----------



## fuzzy butterfly

Hi all, hope everyone is doing well today... 
I'm doing okay bar the dratted joint pain , I have a referral to a rheumy so waiting on the appointment, hope it is not to long off. Hope he can help with the pain... 
Gotta keep smiling


----------



## ronroush7

Hope he can help, Mandy


----------



## fuzzy butterfly

Thanks Ron, me too


----------



## Christi

Mandy i hope he can offer something that can make you feel better , mandy how did your joints start? I have problems holding a cup and my knees when walking makes me sore? I will mention it to my GI on the 13th


----------



## JaimeM

I'll just say ugh


----------



## ronroush7

JaimeM said:


> I'll just say ugh


I hope you feel better soon , Jaime


----------



## fuzzy butterfly

Christi said:


> Mandy i hope he can offer something that can make you feel better , mandy how did your joints start? I have problems holding a cup and my knees when walking makes me sore? I will mention it to my GI on the 13th


Hi hun. They just started aching a little quite a few years before i knew i had crohns.mainly just my right shoulder. Then the left started. after my dx,my elbows,hips,knees started up. Gradualy getting worse. Most recently my fingers are achy and i drop things alot some days more than others.one or two of my knuckle joints are getting knobbly too now.
 Ye mention it to your doc Christi,hope he can help you too hun.


----------



## fuzzy butterfly

Feel better soon jaime.:hug:


----------



## Christi

Thanks mandy it helps allot hug


----------



## duh panda

This evening I have an interview with Camp Oasis for a cabin counselor position. I'm really excited since I was never stable enough to attend as a camper. Even if I don't get it it's nice to finally be getting involved in the local crohn's community!


----------



## ronroush7

duh panda said:


> This evening I have an interview with Camp Oasis for a cabin counselor position. I'm really excited since I was never stable enough to attend as a camper. Even if I don't get it it's nice to finally be getting involved in the local crohn's community!


Best of luck to you.


----------



## Eridon2002

duh panda said:


> This evening I have an interview with Camp Oasis for a cabin counselor position. I'm really excited since I was never stable enough to attend as a camper. Even if I don't get it it's nice to finally be getting involved in the local crohn's community!


That sounds like fun!  Good luck!


----------



## duh panda

Thanks everyone for the support  I think it went okay, at least I had an answer for all their questions  and should know whether or not I made the cut in the next few weeks.

Hoping all of you have been enjoying successful Tuesday's!


----------



## Christi

duh panda im happy for you  and im sure it went well. Just an update from my doctors appointment today i found out i now also have cholesterol and my blood glucose were 10.8 bp still high also and that my vit b12 is low so today i started on a few new meds


----------



## ronroush7

Christi said:


> duh panda im happy for you  and im sure it went well. Just an update from my doctors appointment today i found out i now also have cholesterol and my blood glucose were 10.8 bp still high also and that my vit b12 is low so today i started on a few new meds


Hope they help, Christi


----------



## Christi

Thank you my friend i dont know everything just keep coming and it doesnt stop im so frustrated i dont know what more could go wrong and whats next


----------



## Christi

I need to change my whole diet


----------



## ronroush7

Christi said:


> I need to change my whole diet


Have you tried a food diary?  It seems like I keep finding more and more my stomach can't handle.


----------



## Eridon2002

Christi-There are some good food diary apps.  I use myFitness Pal.  You could also try an elimination diet.  That would be the ultimate test since sometime symptoms don't crop up for 24-48 hours after eating.


----------



## Christi

I do have a dairy yes, i do not have an app for this. Ron i find more and more stuff that i cant eat and i love food. With the colestorol now there a few things that i need cut back on and a few things that i must have less of darn this diseases for making so much trouble will it ever stop? They also need to test me for diabetes, it all just come at once im now at the point of just laughing


----------



## Christi

Eridon2002 what exactly does that app help you with?


----------



## Christi

Atleast i finally got some sleep last night i were out by half past 7 , im so gratefull for that


----------



## Eridon2002

Glad you got some good sleep in Christi!  The app I use helps me keep track of everything I eat.  I have an app on my phone but I can also go online and enter in what I eat for each meal.  It counts your calories, grams of fat, sugar, carbs, etc.  It has reports that I can view bar graphs of the weeks intake of various nutrients(Cholesterol, Sugar, Potassium, Fiber, Calcium, etc).  If something upsets my stomach I can look back and see if I had eaten anything different that might have caused it.  The one I use is called myFitnessPal.  There are a bunch out there though.


----------



## ronroush7

Happy you got some rest last night , Christi.  I keep needing to go to the bathroom every time I turn around.


----------



## Eridon2002

ronroush7 said:


> Happy you got some rest last night , Christi.  I keep needing to go to the bathroom every time I turn around.


Sorry to hear that, hope it gets better soon!


----------



## ronroush7

Thanks


----------



## Christi

Thank you Eridon2002 i will have a look at it  Ron i hope you feel better soon im so sorry that you also need struggle like this


----------



## ronroush7

Waiting for my first dose of Humira Wednesday.


----------



## Christi

In allot of pain i dont know how lay down or move even  breathing hurts


----------



## ronroush7

You need to see a doctor pretty quickly, Christi.


----------



## sagette

Ended up taking a half day and resorted to another round of prednisone due to pain and diarrhea. Hoping it's just due to overdoing it on Easter.


----------



## ronroush7

Hope you feel better soon.


----------



## Christi

My stool looks almost blackish


----------



## ronroush7

Christi, I would consider calling the doctor and mentioning this.


----------



## Christi

Thanks ron i will do that


----------



## ronroush7

Welcome


----------



## Christi

my joints are so sore today since yesterday i took some pills but no relieve


----------



## ronroush7

I am sorry, Christi.  I hope you get some relief soon.


----------



## Eridon2002

Last week I had some joint pain in my right ring finger, the aching arthritis type pain.  I feel so bad for everyone that has to suffer through joint pain.  It is so miserable and gets exponentially worse with each joint affected. Christi-I hope you get relief from it soon!


----------



## Christi

Thank you Eridon2002 still no relief its in my hands and feet sometimes in my knees. Im seeing my GI next week wish its time already


----------



## duh panda

Bit disappointed after trying to taper down to a lower prednisone dose and having withdrawal symptoms too severe to tolerate the lower dose. Caved this morning and returned to what has been tolerated and will give it another shot in a month or so.

Mostly though, feeling hopeful. Got a week off with my love where we enjoying a home-cation and I was able to use his help to get caught up on a lot of medical and personal responsibilities as well as get out of the local area for a bit of exploration. May not be climbing to the mountain peaks, but at least I can still enjoy the views from the top on drives. I may not know when or if I'll ever be doing the things I wish to do, how I wish to do them, but doesn't mean I can't find ways to manipulate my current situation to see what I want to see or do some of what I want to do. 

I woke up this morning with a recipe in mind for peanutbutter butterscotch cookies... Never had them, never made them, frankly never heard of them but its creation is happening as soon as I get off of here  

It's my wish this week that those who are struggling, who do not have relief or are struggling with symptoms can find some joy in today's moments. And for those who are feeling well, that you keep on being well and kill it in your Monday with whatever you do!


----------



## ronroush7

Yum


----------



## duh panda

ronroush7 said:


> Yum


They turned out pretty good!  Will be perfect once I can find a way to keep them from being so crumbly. Hope you're feeling alright today, Ron, and that you have a fabulous day


----------



## ronroush7

Thanks


----------



## Tommy21bn

Today I am waiting for the NHS to get its act together so I can start on Humira. It's been a month since the GI prescribed it and the IBD nurse has not been in touch to show me how to inject myself. I should be used to this after the many years of dealing with the NHS but its lack of speed is still frustrating. 

On the good side, Oramorph has arrived today. Oramorph seems to be better at dealing with the pain but it gives me a sense of euphoria and light headedness that I dislike. The other option of slow release morphine is less effective as a painkiller but it lacks the side effects. Swings and roundabouts with opiates.


----------



## ronroush7

Sorry you are having trouble.


----------



## Christi

ughh still no relief on the joints and i now tried everything


----------



## ronroush7

Christi said:


> ughh still no relief on the joints and i now tried everything


Is there a specialist you can go to?


----------



## Christi

I dont know of any but im going to talk to my GI about this


----------



## ronroush7

Hope you get relief soon.


----------



## Christi

Thank you ron i hope you are doing well? Have you seen mandy around?


----------



## ronroush7

She has been on word association  , change a letter and a few other spots


----------



## ronroush7

I may have asked this before.  If so , forgive me.  My upper part of my body makes involuntary spasms or jerks.  Does this happen to anyone else?


----------



## Eridon2002

I'll get muscle twitches, I think everyone does to some small degree.  Mine is usually when I am laying down falling asleep.  It's like the motor neurons have some pent up energy they need to release before they relax.  I have also heard muscle twitches could be caused by lack of magnesium, calcium, vitamin D, B-vitamins or potassium.


----------



## ronroush7

Thanks


----------



## Christi

Im so happy that i will be seeing my GI tomorrow and hope to get something sorted , i cant keep on strugling like this. Joints still no relief and have to get something for this it will be difficult to do my job if the joints act up


----------



## ronroush7

Hope you can get on the right mix of medicines


----------



## Christi

Thank you ron , im at the hospital now i will update as soon as i know whats going on


----------



## fuzzy butterfly

Hi all sorry for my abcence but not getting updates for all my threads. So im miss out alot because of it. Love to you all and hope your doing as well as poss. Big hugs


----------



## ronroush7

Christi said:


> Thank you ron , im at the hospital now i will update as soon as i know whats going on


My best to you


----------



## ronroush7

fuzzy butterfly said:


> Hi all sorry for my abcence but not getting updates for all my threads. So im miss out alot because of it. Love to you all and hope your doing as well as poss. Big hugs


Big hugs back


----------



## fuzzy butterfly

Thanks Ron.. im a little frustrated with this loss of so many of the threads not coming thro..i dont always get chance to check thro all the mew posts to find what iv not had thro. 
Maybe the forum is struggling with the amount of people on it as iv noticed a lot of new members. 
Take care my friend.


----------



## ronroush7

Hopefully it will be better.  The best to you.


----------



## Christi

Mandy we missed you


----------



## Christi

Today i had xrays and test done to check for artheritis and also my glucose. My meds has been upped again and there were mentioning if in 6 months nothing changed i will have to go on tnf blocker if i spelled that right i hope so lol im now on two kinds of bp meds as my bp are not getting better its 191/126 head not feeling great at all. I also need to see a dietician as i have ibs aswell with crohns.


----------



## ronroush7

Did they prescribe anything for the IBS?


----------



## Christi

They gave me some buscopan


----------



## Christi

And my disease are still active


----------



## ronroush7

Sounds like you need something stronger.


----------



## Christi

Eish this is so exhausting, what are you using for ibs this is new to me


----------



## ronroush7

They gave me Levsin.


----------



## Christi

I will mention that to my doctor thank you ron hugs to all i am off to bed im so done with today lol


----------



## fuzzy butterfly

Iv missed you all too ..hope i keep getting updates. Lots of love to all . 
Christi hope you get to feel better soon hun.


----------



## ronroush7

Right noe, I feel like it doesn't matter what I put in my mouth. My stomach is still going to have trouble.


----------



## Ann Morgan

Eridon2002 said:


> Glad you got some good sleep in Christi!  The app I use helps me keep track of everything I eat.  I have an app on my phone but I can also go online and enter in what I eat for each meal.  It counts your calories, grams of fat, sugar, carbs, etc.  It has reports that I can view bar graphs of the weeks intake of various nutrients(Cholesterol, Sugar, Potassium, Fiber, Calcium, etc).  If something upsets my stomach I can look back and see if I had eaten anything different that might have caused it.  The one I use is called myFitnessPal.  There are a bunch out there though.


Thank you for the information about this app. I am currently counting calories, but I just write it down on a piece of paper each day. Yesterday I just found out that my Samsung Galaxy 5 can read my pulse, Cool !


----------



## Ann Morgan

I have not been on this site for a while. At the beginning of this year I felt hopeful. I started reading books again; I can enjoy something that I love again. I have read 11 paperback novels this year, a major accomplishment for me. I have also lost 24 pounds this year, which is fantastic. But toward the end of February I received my first Disability Update Short Form. So, now I am really stressed out about THAT.


----------



## Eridon2002

Ann Morgan said:


> I have not been on this site for a while. At the beginning of this year I felt hopeful. I started reading books again; I can enjoy something that I love again. I have read 11 paperback novels this year, a major accomplishment for me. I have also lost 24 pounds this year, which is fantastic. But toward the end of February I received my first Disability Update Short Form. So, now I am really stressed out about THAT.


Glad you are feeling better.  I love reading, it's a great form of escapism to plunge into another world in a book.  Don't let yourself get too stressed about the disability form.  I know it's hard not to, but look at it as one step at a time so you don't get too overwhelmed.


----------



## Susan2

I know this sounds trite and simplistic but I've been working hard at not worrying about things that might never happen. Do something about things that you *can* have an effect on; try not to worry about things that you can't - they might never happen and you have wasted all that time and energy worrying.


----------



## ronroush7

Eridon2002 said:


> Glad you are feeling better.  I love reading, it's a great form of escapism to plunge into another world in a book.  Don't let yourself get too stressed about the disability form.  I know it's hard not to, but look at it as one step at a time so you don't get too overwhelmed.


Agree about reading.


----------



## Ann Morgan

Well, I did not see THIS coming. Six hours of terrible, watery diarrhea this morning/afternoon !  Discomfort and nausea too.  Yikes !


----------



## bebe1

Today is a really shitty day. TRIGGER WARNING: PRESCRIPTION DRUG USE!

I woke up at 9am to go to the bathroom. I was in a lot of pain in my abdominal lymph nodes. I was just diagnosed with mesenteric adenitis at the hospital a few days ago (basically means extremely painful enlargement of lymph nodes on the mesenteric wall). I feel as though the lymph nodes on the other side and the middle have started feeling the same way too. One lymph node is about 5cm in diameter in the middle of my lower abdomen. The lymph nodes all over my body are up. There is one in my neck that is up that is a cervical lymph node (between my jugular and my oesophagus) that is incredibly painful and it makes me feel like terrible. I took two of the endone tablets they prescribed me because of the pain and I went back to bed. I woke up at 11am high off of the tablets and I called my mum because I was feeling like crap and wanted to talk to her. We laughed about how loopy the tablets were making me feel, talked about our day and then hung up. [NOTE I was unaware at this point that the endone tablets are actually oxycontin]

I went back to sleep for 4 hours because of the medication. I don't like how it makes me feel. I prefer to sleep it off. It doesn't even help me with the pain that much. I woke up, and saw that my mum had texted me to be really careful of the tablets. I did some research and found out that it was oxycontin and I'm not touching the stuff again. It doesn't help me, makes me feel disgusting, and is overall just a waste of time. I don't want to get hooked on a drug. I just don't want to be in pain anymore. I don't know what to do to treat the pain. I feel hopeless.

The drug had already worn off and I started feeling really nauseous. I threw up continuously for five minutes. There was nothing in my stomach and I just threw up my own stomach lining over and over again. I never EVER throw up. EVER. It is really traumatic for me on the extremely rare occasions that I do. I brushed my teeth and started crying. 

I feel like I'm getting worse. I feel like I'm in so much pain and nothing is helping. I feel like my doctors are going to tell me there is nothing wrong with me even though I have so many symptoms and so many things that would lead to the conclusion that there is something wrong with me.  I feel so scared. I feel like I'm burdening the people around me. I am so upset.


----------



## ronroush7

bebe1 said:


> Today is a really shitty day. TRIGGER WARNING: PRESCRIPTION DRUG USE!
> 
> I woke up at 9am to go to the bathroom. I was in a lot of pain in my abdominal lymph nodes. I was just diagnosed with mesenteric adenitis at the hospital a few days ago (basically means extremely painful enlargement of lymph nodes on the mesenteric wall). I feel as though the lymph nodes on the other side and the middle have started feeling the same way too. One lymph node is about 5cm in diameter in the middle of my lower abdomen. The lymph nodes all over my body are up. There is one in my neck that is up that is a cervical lymph node (between my jugular and my oesophagus) that is incredibly painful and it makes me feel like terrible. I took two of the endone tablets they prescribed me because of the pain and I went back to bed. I woke up at 11am high off of the tablets and I called my mum because I was feeling like crap and wanted to talk to her. We laughed about how loopy the tablets were making me feel, talked about our day and then hung up. [NOTE I was unaware at this point that the endone tablets are actually oxycontin]
> 
> I went back to sleep for 4 hours because of the medication. I don't like how it makes me feel. I prefer to sleep it off. It doesn't even help me with the pain that much. I woke up, and saw that my mum had texted me to be really careful of the tablets. I did some research and found out that it was oxycontin and I'm not touching the stuff again. It doesn't help me, makes me feel disgusting, and is overall just a waste of time. I don't want to get hooked on a drug. I just don't want to be in pain anymore. I don't know what to do to treat the pain. I feel hopeless.
> 
> The drug had already worn off and I started feeling really nauseous. I threw up continuously for five minutes. There was nothing in my stomach and I just threw up my own stomach lining over and over again. I never EVER throw up. EVER. It is really traumatic for me on the extremely rare occasions that I do. I brushed my teeth and started crying.
> 
> I feel like I'm getting worse. I feel like I'm in so much pain and nothing is helping. I feel like my doctors are going to tell me there is nothing wrong with me even though I have so many symptoms and so many things that would lead to the conclusion that there is something wrong with me.  I feel so scared. I feel like I'm burdening the people around me. I am so upset.


I am really sorry


----------



## duh panda

Bebe, what a rough day! I am sorry to hear it. You are not a burden. You are a person with a diverse set of needs and challenges - just like every other individual human on this planet <3 

When nothing is going right - or the days are just extra crummy with high in pain, and fear and worry is clouding my mind I try to remember that it will pass. It is one of the biggest cliches, but for me it does not imply that everything will go away and no longer exist - but that these specific pains today, these specific troubles, worries, and concerns will settle and pass - ebb and flow - that different days, times, and moments bring a new set of challenges even if it is looking/ feeling the same in appearance. 

I personally avoid opiates because they also freak me out due to how poor they make me feel - in addition I did develop an addiction to them as a teen when first trying to cope and manage the disease which has lead me to only accepting opiates under medical supervision (such as during hospitalizations). Working with a chronic pain therapist to develop alternative tools and methods of viewing and approaching my pain has helped me to better accept and face it all. This may be something worth looking into. 

What is important to remember is that a part of pain management and working to treat pain is often goal oriented. Many aim to eliminate pain, when chronic pain might be best managed if the goal is to keep pain in a tolerated range, rather than eliminated entirely.  Sometimes all the tricks in the world cannot manage pain well enough to keep it from passing a point of tolerance into being excruciating, and in such cases pharmaceutical intervention can be easier to tweak as desired. 

Perhaps your medical professional has alternatives to the Oxy-based/ opiate pain killers, or could prescribe a lower dose to be taken more frequently that might not be as severe in its side-effects, with the goal being to keep your pain levels within a more tolerable range. 

No matter how you choose to proceed, I certainly encourage calling your doc and communicating your concerns - we shouldn't have to live in excruciating pain, but also shouldn't need to accept suffering with intolerable side-effects to treat pain.


----------



## duh panda

A wonderfully mixed bag this week. Rough past few days, but I'm taking it easy and trying to be good about taking naps. Had to cancel psych appt. for this afternoon due to waking up with a migraine. I feel guilty not providing 24-hour notice, and having to reschedule often due to how unpredictable symptoms and medication side-effects are any given day. Grr. Sometimes, just gotta growl at life and call it a day.

There have been so many changes for myself and those in my household that I don't feel like it's a bad day, just going to be a difficult one requiring patience. I am extremely proud of how things have been going lately regardless of symptoms etc. because I finally feel settled after having moved almost 2 years ago and am pleased with the local connections I have been making and the close relationships I've been able to maintain. I've also recently gotten my partner back as he's finally escaped 60-hr work weeks and is back to a standard 40. Amazing what it does having that additional time. 

This week a sorority sister flew down for an impromptu visit - first time having someone stay with me in my home who was not family. A bit stressful and exhausting to host, far more outings packed in then I am used to. I am happy to have my bathroom back without an additional body needing to use it. Overall, great to enjoy a bit of company and have a home I feel proud to share with others! 

I also received news that my younger brother was deployed - I am very proud of him and his ability to do what needs doing whether he likes it or not. I am struggling with having him so many time zones away, but I draw a lot of strength from this young man. It seriously sucks that the only people who tend to receive support for deployed family members are spouses, parents and children of the military member. Feels like as a sibling it should not affect me as it has.  

In addition, I received notice I was selected as a cabin counselor for Camp Oasis this summer! [Pending medical clearance on a knee injury.] I am finding all the paperwork stressful, but there's enough time where a little bit every couple days shouldn't be a problem. I think it will certainly push my ability and limits to spend a week in a leading position, but that it is something I can push through to do and I will enjoy being involved in.


----------



## bebe1

duh panda said:


> Bebe, what a rough day! I am sorry to hear it. You are not a burden. You are a person with a diverse set of needs and challenges - just like every other individual human on this planet <3
> 
> When nothing is going right - or the days are just extra crummy with high in pain, and fear and worry is clouding my mind I try to remember that it will pass. It is one of the biggest cliches, but for me it does not imply that everything will go away and no longer exist - but that these specific pains today, these specific troubles, worries, and concerns will settle and pass - ebb and flow - that different days, times, and moments bring a new set of challenges even if it is looking/ feeling the same in appearance.
> 
> I personally avoid opiates because they also freak me out due to how poor they make me feel - in addition I did develop an addiction to them as a teen when first trying to cope and manage the disease which has lead me to only accepting opiates under medical supervision (such as during hospitalizations). Working with a chronic pain therapist to develop alternative tools and methods of viewing and approaching my pain has helped me to better accept and face it all. This may be something worth looking into.
> 
> What is important to remember is that a part of pain management and working to treat pain is often goal oriented. Many aim to eliminate pain, when chronic pain might be best managed if the goal is to keep pain in a tolerated range, rather than eliminated entirely.  Sometimes all the tricks in the world cannot manage pain well enough to keep it from passing a point of tolerance into being excruciating, and in such cases pharmaceutical intervention can be easier to tweak as desired.
> 
> Perhaps your medical professional has alternatives to the Oxy-based/ opiate pain killers, or could prescribe a lower dose to be taken more frequently that might not be as severe in its side-effects, with the goal being to keep your pain levels within a more tolerable range.
> 
> No matter how you choose to proceed, I certainly encourage calling your doc and communicating your concerns - we shouldn't have to live in excruciating pain, but also shouldn't need to accept suffering with intolerable side-effects to treat pain.


Thank you so much. Usually I try to stay positive, but I'll definitely remember your advice about ebb and flow. Its hard to remember that things will pass. I'll definitely talk to my GP about my concerns with Oxy-based medication and see if there's something else I can take. :ysmile:


----------



## Christi

Im so tired and joints are still sore i cant wait for the results it really hurts me when im doing my job :-( i will be at the hosp again tomorrow for my depression. My head has been feeling really dizzy for a few days now feels like i might colapse. When will i be getting off the pred i have been on it since Dec:-(  I wish they would just start me on the biologic already


----------



## ronroush7

Hoping and praying the best for you.


----------



## duh panda

Woke up feeling like a lump of lead. Took a bit to get fingers and body moving and limbs are still very stiff, but everything seems to be perking up. It's a beautiful, sunny morning. 
I keep walking to the lake near me to see if I cant find any ducklings yet, and would really like to get out today, but it'll probably be a few more weeks at the earliest and it might be a better idea to just take it easy and rest today.


----------



## ronroush7

Up most of the night.


----------



## Ann Morgan

Very tired this evening. I think the loss of sleep from previous evenings is catching up with me. Never a good night's sleep.


----------



## sagette

Hit a rough patch last week and ended up in the ER. Followed up with my GI and earned myself a colonoscopy and am back on steroids. I'm irritated because I've been on steroids pretty much since 2014. Entyvio was supposed to be for those of us with steroid dependence and I'm not seeing that it's doing anything for that. I'm also leaving for a week long cruise tomorrow and am scared that I'll get the pain attacked in the middle of the Caribbean.


----------



## ronroush7

Can not wait until Humira kicks in


----------



## Christi

Im so sore nothing helps :-( im feeling very depressed and tired of everything so tired i cant live like this


----------



## ronroush7

Christi said:


> Im so sore nothing helps :-( im feeling very depressed and tired of everything so tired i cant live like this


Sending support


----------



## anitas.paul

Feeling a bit more lifted lifes not so bad


----------



## ronroush7

A lot of gurgling this morning but not able to go the bathroom.


----------



## uhura

duh panda said:


> Woke up feeling like a lump of lead. Took a bit to get fingers and body moving and limbs are still very stiff, but everything seems to be perking up. It's a beautiful, sunny morning.
> I keep walking to the lake near me to see if I cant find any ducklings yet, and would really like to get out today, but it'll probably be a few more weeks at the earliest and it might be a better idea to just take it easy and rest today.


It sounds like you live in a really lovely area. I hope that you get the rest you need and are able to go searching for those ducklings by the lake.


----------



## ronroush7

uhura said:


> It sounds like you live in a really lovely area. I hope that you get the rest you need and are able to go searching for those ducklings by the lake.


Me too.


----------



## anitas.paul

Me too them duck's sound nice I'm beginning to think that even rough days are pretty fun


----------



## anitas.paul

Little less sore and better sleep for last two nights at least lets see if i can walk a bit more upright todsy and how many outdoor steps i can muster


----------



## fuzzy butterfly

Morning  just woke up still lying in bed waiting for my body to unstiffen...
Glad your feeling a bit better Paul. Dont be going too far on the outdoors bit.. take it easy pal.


----------



## anitas.paul

Haha doubt i will make 18.000 steps again but I'm gonna give it a good try just waiting for phone to charge then I'm off


----------



## luDena

I am doing better since I was put on potassium  Wednesday.  I can't believe how much better emotionally and physically.  No more charley horses I actually  feel like interacting  with friends and family again.  Talked 3 hours on the phone with my best friend..  I hadn't talked to anyone on the phone fore more than a few minutes in over 2 years. Who knew low k+ affected the brain so much. 

Crohn symptoms right now are mild for ma.  But I am proposal for other problems so what my abdomen would be like with out them?  ? ? I don't  want to find out.

I have been staying really strict on my gluten free diet that helps I also have Celiac sprue.

I have two over sized spoiled  Pomeranian's.  Not fat but just kept growing.  One is 12 lbs.  And the other is 18lbs.  Thanks to my kids I also have 1 Russian tortoise  and 2 chinchillas and 1 spoiled cat. 

I Hope ya all get into remission  remember stress is our enemy or that's what my doctor tells me.


----------



## luDena

I had emergency gall bladder surgery  while on AZO. Was in the hospital 1 month, life support 9 days. I stayed   off of AZO for 3 years. Used prednisone when flared.  Then I  had a bad flare. My crohns attacked my pancreas and with in 1 week I was a insulin diabetic . Been back on AZO since but I get infections, colds and fly's easily 

The doctors are trying to convince me to go on humira, I'm to afraid.  My aunt died of renegade induced lymphoma.  She was on it for arthritis


----------



## Ann Morgan

Well, I normally have diarrhea, but the past 3 days I have had to push really hard to have a BM ( which is, of course is making my hemorrhoids bleed.)  Yikes !


----------



## fuzzy butterfly

Finaly got outa bed now coffee time 
luDena hi.. glad things are improving for you. Hope it continues

Anitas paul.. enjoy your walk and hope it dosent wear you out to much


----------



## luDena

I am sorry Hope you get better soon

I have severe chronic pain due to causes other than crohns and have to take iPod's just to be able to walk without them I would be dead.  

I don't know if I am lucky or not , I've  had crohns pain so long it's now chronic and the meds suppress or/and cover up some of the crohns pain which means it allows me to take longer going to the doc. And when I finally can't tough it out any longer the flare is really bad. 

The other thing is. Because of the chronic pain I have absolutely no side effects from the medicine. No loopiness no drowsiness  and it doesn't get rid of the pain just makes it bearable and it doesn't work on acute pain so if I get a headache I have to take spring or Tylenol. 

You should tell your doctor as it sounds as if you don't tolerate that pain medication.  There are others out there what works for one person doesn't mean it Will work for another.  Morphine doesn't work on me so I always let doctors know so they won't prescribe it. 

Good luck and Hope you feel better soon.


----------



## anitas.paul

Back and still not sore flipping right leg is numb again but still got 9500 steps in and quite a few healthy with my numb legged self haha took some nice pics for Anita but unfortunately no ducks


----------



## luDena

OK I need to figure out how to reply to or answer messages so that if shows who I'm messaging.  Right now it looks like I'm having a conversation  with myself or just plumb loco.


----------



## fuzzy butterfly

luDena said:


> OK I need to figure out how to reply to or answer messages so that if shows who I'm messaging.  Right now it looks like I'm having a conversation  with myself or just plumb loco.


Lol .. if you press the reply button underneath the post you want to reply to that will help make it clearer who you are repling to.. their msg will show up in yellow with your reply under it. Hope that helps.  or you cud put their name at the begining


----------



## luDena

Thanks so much

 I'm on a 7 inch Kindle tonight my other unit is charging and I didn't see the button on the left.  I can make all kind of excuses   like how small the print is or my key board keeps the button covered or I just didn't look left but really it's just a DUh moment :ack: :soledance:


----------



## anitas.paul

luDena said:


> Thanks so much
> 
> I'm on a 7 inch Kindle tonight my other unit is charging and I didn't see the button on the left.  I can make all kind of excuses   like how small the print is or my key board keeps the button covered or I just didn't look left but really it's just a DUh moment :ack: :soledance:


You mean like duhhh


----------



## anitas.paul

fuzzy butterfly said:


> Finaly got outa bed now coffee time
> luDena hi.. glad things are improving for you. Hope it continues
> 
> Anitas paul.. enjoy your walk and hope it dosent wear you out to much


Bout a week coffee free Fuzzy just roiboos tea hot water with lemon carrot juice and h2o now


----------



## ronroush7

It is not painful but I have a little bump on the inside of my lip.  Mentioning animals, my wife has a yellow Labrador retriever which is a service dog for her.  He loves everyone.


----------



## fuzzy butterfly

anitas.paul said:


> Bout a week coffee free Fuzzy just roiboos tea hot water with lemon carrot juice and h2o now


Hey well done you.. i couldnt get outa the door without a coffee.


----------



## fuzzy butterfly

luDena said:


> Thanks so much
> 
> I'm on a 7 inch Kindle tonight my other unit is charging and I didn't see the button on the left.  I can make all kind of excuses   like how small the print is or my key board keeps the button covered or I just didn't look left but really it's just a DUh moment :ack: :soledance:


No worries welcome to the duh club :soledance:


----------



## fuzzy butterfly

ronroush7 said:


> It is not painful but I have a little bump on the inside of my lip.  Mentioning animals, my wife has a yellow Labrador retriever which is a service dog for her.  He loves everyone.


Aw he sounds a friendly sole Ron . Hope the bump goes soon.. i think iv got a little sore or ulcer in my mouth . Might try some bonjela n hope it helps.


----------



## ronroush7

fuzzy butterfly said:


> Aw he sounds a friendly sole Ron . Hope the bump goes soon.. i think iv got a little sore or ulcer in my mouth . Might try some bonjela n hope it helps.


Thanks


----------



## The Real MC

Ever since I have isolated and eliminated the trigger foods that cause cramps, I have never felt better in the past year.  A couple of times I tested my tolerance and had very brief cramps - nice to know that my hypothesis works (and my GI agrees).  I am now down to Pentasa twice a day and nothing else.


----------



## ronroush7

The Real MC said:


> Ever since I have isolated and eliminated the trigger foods that cause cramps, I have never felt better in the past year.  A couple of times I tested my tolerance and had very brief cramps - nice to know that my hypothesis works (and my GI agrees).  I am now down to Pentasa twice a day and nothing else.


That is great


----------



## fuzzy butterfly

The Real MC said:


> Ever since I have isolated and eliminated the trigger foods that cause cramps, I have never felt better in the past year.  A couple of times I tested my tolerance and had very brief cramps - nice to know that my hypothesis works (and my GI agrees).  I am now down to Pentasa twice a day and nothing else.


Hey great news  hope all stays well for you. Best wishes .


----------



## Christi

Long weekend now lol im still in pain and my knee giving me a horrible time.


----------



## fuzzy butterfly

Hi christi. Enjoy the long weekend hun and rest up your knee and self in general.
Big hugs 
Mandy x


----------



## ronroush7

Been wondering about you, Christi.  Hope you feel better soon.


----------



## Christi

Thank you mandy i will do  ron thank you im around im just having a difficult time at the moment


----------



## ronroush7

Support and prayers, Christi


----------



## Christi

Thank you ron  i hope you and mandy are well , do you know how jennifer are doing?


----------



## ronroush7

Haven't seen her for a while


----------



## fuzzy butterfly

Thanks christi.. im doing ok bar fatigue, same old there.
Sorry your having a rough time love :hug:. Hope things improve soon for you sweetheart.
Iv not seen jennifer for a while either hope she is ok!!

Love and hugs to all


----------



## Christi

Im resting allot this weekend my intestines are so angry i have been having trips to the toilet every 15 min to half an hour. Yes i hope jennifer is okay


----------



## ronroush7

I am so sorry, Christi


----------



## fuzzy butterfly

Aw hun it really is time you got a breather from all this pain.
Sending hugs   support your way darling. :hug:


----------



## Ann Morgan

I went to the ER twice this week. Naseua and dry heaves. Colon and stomach pain. Constipation and then diarrhea. Painful, bleeding hemorrhoids. Bloated right now. CT is OK. X-rays OK. Blood Test OK. My ass hurts and I am tired :-(       

I will be calling my Gastroenterologist on Monday morning. Someone HAS to find a cure for this !!!


----------



## ronroush7

Ann Morgan said:


> I went to the ER twice this week. Naseua and dry heaves. Colon and stomach pain. Constipation and then diarrhea. Painful, bleeding hemorrhoids. Bloated right now. CT is OK. X-rays OK. Blood Test OK. My ass hurts and I am tired :-(
> 
> I will be calling my Gastroenterologist on Monday morning. Someone HAS to find a cure for this !!!


Prayers and support.


----------



## fuzzy butterfly

Aw Ann sorry your suffering hun. Hugs and support your way.. 
Best wishes


----------



## Kevin_61

First of all I hope everyone here a very good week!
Right now drinking my morning first cup of coffee.   Waiting for the gas to build up and then pass to get things going.    Trip to the bathroom every morning, several X,
And sometimes the 1st one can be a 45-minuter!   Which I know is not good!
I always feel like I need to go ( bm / vapors)   
 Waiting for my GI Dr. to call  me saying they got the Insurance to  cooperate and my pills are ready!
    Some days I just wish they could just Remove all of my intestines  and I'd be fed intraveinousely!  (However you spell it  )


----------



## ronroush7

I hope you feel better real soon.


----------



## Christi

I hope all feel better soon


----------



## ronroush7

Christi said:


> I hope all feel better soon


Yes


----------



## Christi

Thank you mandy and ron hugs to you , im happy to say that i will be seeing my gi next week


----------



## ronroush7

Great, Christi.


----------



## Lisa

My lovely little sharing daughter shared her head cold with me.....Ugh!!!!


----------



## ronroush7

Lisa said:


> My lovely little sharing daughter shared her head cold with me.....Ugh!!!!


Ouch.  Sorry, Lisa.


----------



## Ann Morgan

Kevin_61 said:


> First of all I hope everyone here a very good week!
> Right now drinking my morning first cup of coffee.   Waiting for the gas to build up and then pass to get things going.    Trip to the bathroom every morning, several X,
> And sometimes the 1st one can be a 45-minuter!   Which I know is not good!
> I always feel like I need to go ( bm / vapors)
> Waiting for my GI Dr. to call  me saying they got the Insurance to  cooperate and my pills are ready!
> Some days I just wish they could just Remove all of my intestines  and I'd be fed intraveinousely!  (However you spell it  )


Kevin, I hear ya !  I was driving home from the ER yesterday just wishing I had a stoma so that I could stop all this colon craziness. I had a bowel accident in my ER Room yesterday and at home in my bathroom  this morning.  Today I have to go to the Laundromat and grocery store and my Primary Care Doctor appointment and worry about pooping in my pants the entire afternoon. :-(

Even worse, I have to wait 3 weeks before my I can see my Gastroenterologist. :-(

Kevin, I hope you get that phone call today !!!


----------



## Ann Morgan

Kevin : I live in Glendale, Arizona.


----------



## ronroush7

Ann Morgan said:


> Kevin, I hear ya !  I was driving home from the ER yesterday just wishing I had a stoma so that I could stop all this colon craziness. I had a bowel accident in my ER Room yesterday and at home in my bathroom  this morning.  Today I have to go to the Laundromat and grocery store and my Primary Care Doctor appointment and worry about pooping in my pants the entire afternoon. :-(
> 
> Even worse, I have to wait 3 weeks before my I can see my Gastroenterologist. :-(
> 
> Kevin, I hope you get that phone call today !!!


Ann, I am sorry for what you are going through.  I hope things are better soon.


----------



## Ann Morgan

Thanks to you all for caring


----------



## Ann Morgan

ronroush7 said:


> Ann, I am sorry for what you are going through.  I hope things are better soon.


Thanks to you all for caring.


----------



## Kevin_61

Ann Morgan said:


> Kevin, I hear ya !  I was driving home from the ER yesterday just wishing I had a stoma so that I could stop all this colon craziness. I had a bowel accident in my ER Room yesterday and at home in my bathroom  this morning.  Today I have to go to the Laundromat and grocery store and my Primary Care Doctor appointment and worry about pooping in my pants the entire afternoon. :-(
> 
> Even worse, I have to wait 3 weeks before my I can see my Gastroenterologist. :-(
> 
> Kevin, I hope you get that phone call today !!!


Thanks so much for your response, I'm in Prescott!  I hope you get feeling better, and I hope you're Drs Appt goes well this afternoon!  I had Dr. Susan Garrand in Scottsdale a few years ago, I had the minor rectal - prolapse surgery, I was at the Thompson Peak Hospital for three nights. That Hospital was more like a fancy Hotel! Real nice place!


----------



## fuzzy butterfly

Hi all love n hugs. 
So so weary today. Helped my son move out to his own home mon. Long long heavy day. 
Im getting to old for that lark lol 
 Best wishes n keep as well as you can folks.


----------



## ronroush7

Best to you, Mandy.


----------



## fuzzy butterfly

Thanks Ron. And too you


----------



## Christi

Mandy hope you are feeling better my friend


----------



## Christi

Im going to go mad im crying since yesterday , i do not feel good i need to see my psyciatrist and psycologist! Im having chest pain and my intestines are going mad!


----------



## ronroush7

Maybe you should go to the ER.  Let us know how you are.


----------



## fuzzy butterfly

Oh christi hun please go to ER sounds like you shouldnt wait my lovely. Much loves


----------



## duh panda

One of those days when life just takes repeated kicks at my proverbial nuts. 70k word document fried along with a less-then-year-old laptop - crohn's acting all crohnsie - joints are utterly useless today - a year and a half of savings intended for getting/ training a dog drained to cover a roommate's lack of character and integrity as he's shafted us on rent. 

Somehow I don't think my expectations are that high in life, hell according to others they're downright minimal, but damn if I'm not proven wrong time and time again.


----------



## ronroush7

I don't feel like I can empty myself today.


----------



## fuzzy butterfly

Hells bells !!! Duh panda. Thats a rough run there.. some people are downright selfish, hope you have given that roomy their marching orders...
So sorry your going thro all this, big hugs . Take heart that we here care about you and wish only the very best for you. Heres hoping things improve quickly for you by some means or another.


----------



## fuzzy butterfly

Oh Ron  are you still having that feeling old chum.. has your doc not been able to help or at least explain why you feel that way quite alot. 
Best wishes


----------



## smt

duh panda said:


> One of those days when life just takes repeated kicks at my proverbial nuts. 70k word document fried along with a less-then-year-old laptop - crohn's acting all crohnsie - joints are utterly useless today - a year and a half of savings intended for getting/ training a dog drained to cover a roommate's lack of character and integrity as he's shafted us on rent.
> 
> Somehow I don't think my expectations are that high in life, hell according to others they're downright minimal, but damn if I'm not proven wrong time and time again.


I am really very sorry. I send my wishes to you. 

I too was not well today, somehow trudged along. On top of that, the temperature is 45 C at the maximum, and I am feeling very despondent. I have got a presentation on Friday, and that is keeping me awake. It is past midnight here.


----------



## ronroush7

fuzzy butterfly said:


> Oh Ron  are you still having that feeling old chum.. has your doc not been able to help or at least explain why you feel that way quite alot.
> Best wishes


I have been on Humira seven weeks so far.  I have less itching where the psoriasis is but nothing different win the Crohns so far.  Any word from Christi?


----------



## duh panda

Feeling the love - thanks all for the well wishes - definitely helping carry me through this angst-fueled day! 

Mandy (... I still think of you by the prior username  ) - He's got his move-out date (19th). My mom pointed out that this is why I act responsibly - so others' irresponsible actions don't totally take me down, but I think the 19th cant come soon enough so I can get on with life and have this roommate solidly in the past where he belongs. I get so impatient with transition periods. Best wishes to you today, and that the week is treating you kindly!! 

Smt - Here's to you finding hope that matches your tenacity to carry you through the week in better spirits. 

Ron - Thinking of you, often, and praying that you can catch a breather and enjoy some relief from discomfort.


----------



## fuzzy butterfly

Hi duh your mum has a good point there.. dont let the beggers drag you down hun. Wont be long before the roomy has gone, which is good. You dont need people like that in your life. You try and hang in there ,hope you can keep well and take care. 

Ron glad the itchiness is lessening. Sometimes the meds can take a while to kick in proper. Hang in there mate.

Smt oh that pretty hot must make things hard work when its that hot. You try n take it as easy as you can and hang in there. Good luck with the presentation


----------



## ronroush7

Best to you, Mandy.


----------



## Christi

Im being admitted today they suspect that i have a blood clot in my lung , crohns are still active not in remission


----------



## ronroush7

I am sorry, Christi.  I hope they can get this taken care of quickly.  Let us know how you are.


----------



## Christi

thank you ron im very sore and the test are to much today


----------



## ronroush7

I am sorry.


----------



## fuzzy butterfly

Aw Christi you poor girl.. i really hope they can get you some relief from all your troubles hun. 
Sending the biggest hugs possible. Take care my friend . Love Mandy xx


----------



## Christi

Thank you mandy they did give mw something for pain butnim still waiting to hear if its pulmanary embulism


----------



## ronroush7

Hoping the best for you, Christi.


----------



## Christi

thank you ron  im tired of everything this life is not working for me


----------



## ronroush7

Everyone here us supporting you, Christi


----------



## Christi

Thank you ron thanks to all my friends , i feel that i cant fight anymore but its nice to come and vent and i know that you understand while other people dont


----------



## fuzzy butterfly

Hi Christi.. i had a p.e shortly after my first op, had to go on warfarin for a few months. I must say it was quite a painful experience untill i got it diagnosed. Try n keep your chin up hun. Wishing the best for you n hoping its not a p.e. 
Love n hugs


----------



## Jennifer

Christi said:


> Thank you ron  i hope you and mandy are well , do you know how jennifer are doing?



My Grandpa passed away before my birthday in early April so I had to help with the funeral then try and heal some myself but then my sister and her family decided that they would be moving to Washington around that same time so I was helping them with the move. I watched their baby almost everyday and helped get their trailer ready, helped with the yard sale and then my parents decided that they wanted to go to Washington to make sure they made it ok and to visit with them for a couple days up there so I went with them. 

I'm alive, not exactly well because I'm still dealing with the loss of my grandpa and having some of my family move away that I saw almost everyday so there's a huge empty space in my life/heart right now. 

I was also diagnosed with Osteopenia while I was gone from the forum. As if I needed another diagnosis. :ybatty:


----------



## ronroush7

I am sorry for the loss of your grandfather, Jennifer.


----------



## fuzzy butterfly

Aw Jennifer im so sorry for your loss hun. 
What an awful upheaval your going through, you must be missing them all in different ways so much...sorry that you have to deal with yet another diagnosis too. 
Sending love n big hugs :hug: 
Take care hun


----------



## Kevin_61

So sorry about losing your Grandfather!
I lost my Dad soon be 5 yrs, my health has gone downward ever since.
I wish you the very best!


----------



## Ann Morgan

Today I feel confused. I have UC and my symptoms have been diarrhea for years. Now constipation for a month. My Gastroenterologist recommended Miralax. I am now keeping a food diary and trying the Miralax and keeping track of my bowel movements and what they are like. I am just trying to find some relief and some kind of a balance. Recently I have had constipation, stomach pain, colon pain, bloating, dry heaves, naseua and some diarrhea. I am tired of making lists..how I feel, what I do, how much I spend, where I go, what I eat and when I poop. :-(


----------



## ronroush7

Ann Morgan said:


> Today I feel confused. I have UC and my symptoms have been diarrhea for years. Now constipation for a month. My Gastroenterologist recommended Miralax. I am now keeping a food diary and trying the Miralax and keeping track of my bowel movements and what they are like. I am just trying to find some relief and some kind of a balance. Recently I have had constipation, stomach pain, colon pain, bloating, dry heaves, naseua and some diarrhea. I am tired of making lists..how I feel, what I do, how much I spend, where I go, what I eat and when I poop. :-(


Sorry.


----------



## Ann Morgan

Jennifer said:


> My Grandpa passed away before my birthday in early April so I had to help with the funeral then try and heal some myself but then my sister and her family decided that they would be moving to Washington around that same time so I was helping them with the move. I watched their baby almost everyday and helped get their trailer ready, helped with the yard sale and then my parents decided that they wanted to go to Washington to make sure they made it ok and to visit with them for a couple days up there so I went with them.
> 
> I'm alive, not exactly well because I'm still dealing with the loss of my grandpa and having some of my family move away that I saw almost everyday so there's a huge empty space in my life/heart right now.
> 
> I was also diagnosed with Osteopenia while I was gone from the forum. As if I needed another diagnosis. :ybatty:


I am so sorry to hear about your Grandpa.


----------



## Ann Morgan

Christi said:


> Thank you ron thanks to all my friends , i feel that i cant fight anymore but its nice to come and vent and i know that you understand while other people dont


Stay Strong and keep in touch.    :heart:     

Hopefully you can start feeling better after talking to your psychiatrist and psychologist.


----------



## ronroush7

Agree


----------



## Christi

Hope everyones doing well, i have been going through some stuff the last couple of weeks and sorry that im not really active at the moment


----------



## fuzzy butterfly

Hi Christi. Dont be sorry for being inactive hun . You n your health come first .please just take care of yourself. Love hugs n best wishes :hug:


----------



## Julia12345

Hi,  think this here is a great idea,  just alone to know we are not alone and to talk about it .. As it helps... Well i just posted my update on my thread and now its 1:48 am still sitting awake in bed and started sweating badly and hot flushes..  Me partner is snooring so my son and our dogs.. I am tired and this flare up ( since beg of april) is having massive inpackt in my life..  Just want to get back to remission to be able to dance again... It sucks

Peace and strenght xx


----------



## ronroush7

Julia12345 said:


> Hi,  think this here is a great idea,  just alone to know we are not alone and to talk about it .. As it helps... Well i just posted my update on my thread and now its 1:48 am still sitting awake in bed and started sweating badly and hot flushes..  Me partner is snooring so my son and our dogs.. I am tired and this flare up ( since beg of april) is having massive inpackt in my life..  Just want to get back to remission to be able to dance again... It sucks
> 
> Peace and strenght xx


Hope you feel better soon.


----------



## ronroush7

Feeling a little in the bum lately.


----------



## fuzzy butterfly

Hi hope everyone feels better very soon. Sending love hugs n support your way :hug:


----------



## ronroush7

ronroush7 said:


> Feeling a little in the bum lately.


A little sore in the bum I meant.


----------



## fuzzy butterfly

I got you Ron.. i do the same thing missing words out lol  hope it feels better soon my friend


----------



## ronroush7

I have only been able to go to the bathroom once but I have felt like I needed to go more.  Don't know if I am constipated.


----------



## duh panda

Short version: feeling good, stressful life things finally settling down! Symptoms still about, but nothing I can't handle.

Things are slow on GI front, but continue moving in a better direction. I've really been struggling to stay compliant with taking my methotrexate injections as no matter what Dr tries, I'm still seeing migraines from it that make me even more useless than crohns symptoms ever were. 

Getting lower on pred dose. Will drop to 6 mg this Sunday, lowest dose in 3 years and symptoms aren't flaring back up! Weight falls off with tapering, but I'm hopeful that'll bounce back as I keep stabilizing. 

Secondary infections suck and are keeping me on my toes, but that's just life at this point. Need them gone by end of month for knee surgery. So excited as I might just be jumping/ running/ skipping again for the first time in years by Fall. I've always wanted to try a triathlon, now it's looking a bit more possible!

That terrible no good horrible lazy roommate is GONE, and we had him sign contract releasing all rights to his portion of the deposit. The new roommate is great so far! Such a relief to no longer have that drama going on. I have 0 tolerance for passive aggressive individuals. Stress makes symptoms noticeably worse.

Currently enjoying a brief vacation visiting family, seeing my sis walk for her university degree, and letting my mom spoil me while my partner holds down the home front  so good to get a bit of a break and let someone else plan meals/ cook etc. all while knowing my partner gets to enjoy a full weekend and isn't using all his time off tackling doc appts with me. Caretaker burn out and duties often look just as stressful/ exhausting as being the patient.


----------



## ronroush7

Don't know if it means anything but I have been having some minor pain on my left side.


----------



## Ann Morgan

It is 1:30am, Tuesday morning, in Glendale, Arizona and I am in the Emergency Room. I started to have severe stomach pain on Monday afternoon and evening. Getting some fluids, Zophran and Morphine, plus an x-ray of my abdomen here at the ER. I am so sick and tired of being sick and tired.  : - (


----------



## ronroush7

I am sorry Ann.  Prayers.


----------



## Susan2

I woke myself up at 4am from a dream of not being able to find a working, clean, unoccupied toilet (a dream that I often have when things are going askew) to find that my stoma bag was leaking all over the bed. I'm 73 now and I worry so much about whether, as I get older, I'm going to be able to clean up myself and the bed and the floor and my pyjamas after a leak. It's times like this that I could just sit and cry...


----------



## ronroush7

Susan2 said:


> I woke myself up at 4am from a dream of not being able to find a working, clean, unoccupied toilet (a dream that I often have when things are going askew) to find that my stoma bag was leaking all over the bed. I'm 73 now and I worry so much about whether, as I get older, I'm going to be able to clean up myself and the bed and the floor and my pyjamas after a leak. It's times like this that I could just sit and cry...


Sorry.


----------



## smt

Susan2 said:


> I woke myself up at 4am from a dream of not being able to find a working, clean, unoccupied toilet (a dream that I often have when things are going askew) to find that my stoma bag was leaking all over the bed. I'm 73 now and I worry so much about whether, as I get older, I'm going to be able to clean up myself and the bed and the floor and my pyjamas after a leak. It's times like this that I could just sit and cry...


Madam, you are in my prayers. You are my late mother's age and I send you my regards and love.


----------



## fuzzy butterfly

Hi all so sorry you are having rough times at the mo. You are all in my prayers and i send love hugs n support your way .
May things improve soon. :hug: :hug:


----------



## duh panda

Thinking of all of you. 

Today an old friend reached out due to a family friends son recently being diagnosed, 14 years old. Some days, like today, the bull and injustice in the world just eats me up. Not feeling very strong or hopeful tonight. Doesn't help that visiting family tends to highlight the ways crohns complicates life, even when things are improving, I don't even dream or imagine keeping up any more.


----------



## ronroush7

duh panda said:


> Thinking of all of you.
> 
> Today an old friend reached out due to a family friends son recently being diagnosed, 14 years old. Some days, like today, the bull and injustice in the world just eats me up. Not feeling very strong or hopeful tonight. Doesn't help that visiting family tends to highlight the ways crohns complicates life, even when things are improving, I don't even dream or imagine keeping up any more.


I am so sorry.


----------



## Ann Morgan

I was given a prescription for Bentyl. I took 3 pills yesterday. Wierd side effects. Not taking any more Bentyl. I would never be able to drive a vehicle or make decisions while taking the Bentyl. Anyone here ever taken Bentyl ?


----------



## ronroush7

Ann Morgan said:


> I was given a prescription for Bentyl. I took 3 pills yesterday. Wierd side effects. Not taking any more Bentyl. I would never be able to drive a vehicle or make decisions while taking the Bentyl. Anyone here ever taken Bentyl ?


Call your doctor and let them know what is going on.


----------



## Ann Morgan

The ER people were the ones that prescribed me the Bentyl. The soonest I can see my Primary Care Doctor is June 13th and the soonest I can see my Gastroenterologist is July 1st. I am very thankful to have Health Insurance and to have access to doctors.  All my tests at the ER do not show anything wrong ( CT scan, x-ray, blood test and urine test ). If nothing is wrong then why am I feeling so sick. I have not changed my lifestyle or what I am eating or drinking. I am having the worst heartburn of my life today, even after taking my Protonic and Extra Strength Gaviscon. On Sunday night I had a great appetite and went to the grocery store the next day. Now I do not have any desire to eat and all the food I bought is just sitting in my fridge. Thanks for listening  I am just trying to figure this all out. Well I guess I won't have any problems right now losing the 25 pounds I want to lose. I have already lost 30 pounds this year so far.


----------



## ronroush7

My skin has been irritated from going to the bathroom and cleaning myself so much.


----------



## fuzzy butterfly

Oh Ron sounds very uncomfortable. Have you tried using petrolium jelly inbetween visits..


----------



## ronroush7

That is what the gi suggested and I think it is helping.


----------



## fuzzy butterfly

Aw good hope it does help mate. I know it is not fun when this happens to us.


----------



## ronroush7

Thanks


----------



## fuzzy butterfly

:hug:


----------



## ronroush7

My skin has been irritated and sore lately.  This morning, I thought I felt a bump in my rectal area.  I wear Depends and it seems like something has seeped through.


----------



## duh panda

Worst panic attack I've ever experienced night before last where I couldn't talk, move, breath. Still feeling unsettled, but glad to have my trip to visit with family over and be back to sleeping in my own bed  and using my own toilet! Not to mention the return of naps, and peace & quiet haha


----------



## Ann Morgan

ronroush7 said:


> My skin has been irritated and sore lately.  This morning, I thought I felt a bump in my rectal area.  I wear Depends and it seems like something has seeped through.


I am sorry that you are experiencing such discomfort. I understand how you feel. I carry a Poise Pad, a tube of Preparaton H Cream and Cottonelle Wipes in my purse at all times. I wear a Poise Pad every day /night just in case I have any leakage. I use Preparation H Cream /Ointment on my bottom to ease the irritation. And I always use Cottonelle Wipes every time I have a BM. I hope you feel better soon.


----------



## ronroush7

Thanks


----------



## Ann Morgan

duh panda said:


> Worst panic attack I've ever experienced night before last where I couldn't talk, move, breath. Still feeling unsettled, but glad to have my trip to visit with family over and be back to sleeping in my own bed  and using my own toilet! Not to mention the return of naps, and peace & quiet haha


I suffer from anxiety too. I agree, it is always nice to be at home where you can relax and do things at your own pace and set your own schedule. I love my peace and quiet too


----------



## Ann Morgan

I am bloated this evening, it is good that all my pants have an elastic waist !


----------



## ronroush7

I have been constipated all morning.  I can go.  It is just taking a while.


----------



## ronroush7

A lot of blood when cleaning myself today


----------



## fuzzy butterfly

Oh Ron hope that stops soon.  Take care n phone your doc if u feel u need to. Hugs n best wishes


----------



## ronroush7

Thanks, Mandy.  All the best.


----------



## fuzzy butterfly

Hey no problem Ron.. always here if u need me, thats what friends are for. Look after yourself


----------



## bdopp

Hi - newcomer to the forum.  Just found out that I developed antibodies to the remicade I've been on for the past year and a half so I'm a little disappointed and somewhat nervous about other treatment options.  I have moderate crohns...no surgery and not flaring but not super excited about the other anti TNF's out there.  Looking for advice from others who've been in this situation.


----------



## ronroush7

bdopp said:


> Hi - newcomer to the forum.  Just found out that I developed antibodies to the remicade I've been on for the past year and a half so I'm a little disappointed and somewhat nervous about other treatment options.  I have moderate crohns...no surgery and not flaring but not super excited about the other anti TNF's out there.  Looking for advice from others who've been in this situation.


Welcome.  I am sorry you had bad results with the Remicade.  I personally have been on four biologics.  I am not sure which ones are anti-TNF.  There is a great section in here called Treatment.  You can try posting in there also.  Have you talked to your doctor about the next step?


----------



## bdopp

Hi thanks for the welcome.  I was on Remicade back about 10 years ago and had great results....then was basically on nothing but Pentasa for about 10 years being basically in complete remission.  I'm a lawyer (former litigator) and about 2 years ago I was representing a client on a high stakes trial and started flaring badly all of a sudden.  Doctor gave me steriods and Humira which took me out of the flare but gave me terrible side affects like nausea, fatigue, brain fog, weird liver levels, trouble sleeping, ect... Switched off and then back on remicade which was fine until a couple months ago and my recently finding out that my body built up anitbodies.

Anyways- mostly venting....crohns has taken a big toll on my career among other things and I guess you can never let your guard down with it.


----------



## Christi

Hi everyone I am still going through some stuff it also turns out my dr cant help me so im at a stage that I dont know what to do


----------



## ronroush7

Christi said:


> Hi everyone I am still going through some stuff it also turns out my dr cant help me so im at a stage that I dont know what to do


Hope you can get help soon.


----------



## fuzzy butterfly

Hi Christi.. so sorry to hear your still having a bad time hun.
What has your doctor offered you that he feels there is nothing more he can do? 
Bigs hugs n love


----------



## MissLeopard83

Yesterday and today were both really good days, aside from minor bloating, which was relieved by Phazyme and Pamabrom (I retain water, for some reason).  I've been trying to limit my fiber as that seems to be a catalyst, too.  This morning, I woke up with abdominal cramps because I took a "nap" last night and didn't wake up until this morning (thank God I set my alarm) so I missed my last dose of Bentyl.  It cleared up an hour after I took my morning dose.  I allowed myself some red meat at lunch as I've not had any in over a month, and I seem to be doing OK, for the time being.


----------



## MissLeopard83

I forgot to post this - yesterday afternoon was horrible on the ride home from work.  I should never have eaten that red meat (burger with no bun) at lunch yesterday as I paid for it.  I had sharp pain in my right abdomen which moved to the left side and down as time went on.  Fortunately, I had my Bentyl with me and, as it was time for my dinnertime dose, I took it while sitting at a stop light with lots of water.  15 minutes later, it was gone, but it was horrible.  I haven't had pain like that in a while.  I think it was directly related to the burger as that is the first time I had red meat in over a month.  It made me say to myself that I will not cheat again.

I woke up this morning with crampy pain in my lower abdomen, which was relieved by having a BM.  I felt really moody this morning, as well as fatigued, so I may have to take a nap soon.


----------



## MissLeopard83

I just woke up from a nap feeling really crummy, so I took my temperature.  I'm running a low grade fever.  It's super hot outside and, even though our A/C is on, it's pretty warm inside, too.  My abdomen is really swollen below the belly button.


----------



## ronroush7

MissLeopard83 said:


> I just woke up from a nap feeling really crummy, so I took my temperature.  I'm running a low grade fever.  It's super hot outside and, even though our A/C is on, it's pretty warm inside, too.  My abdomen is really swollen below the belly button.


Call your doctor.


----------



## MissLeopard83

ronroush7 said:


> Call your doctor.


Unfortunately, I can't as he is on vacation until the 12th.  I'm pretty sure it's from the burger I ate yesterday.  I'm keeping a food diary of the symptoms I experience so I hope it will help with a diagnosis.


----------



## MissLeopard83

I've been noticing a weird pain around my belly button.  It's kind of crampy, too, so I took my noon dose of Bentyl.  Not sure what that's about, but I just ate a small snack.


----------



## ronroush7

MissLeopard83 said:


> I've been noticing a weird pain around my belly button.  It's kind of crampy, too, so I took my noon dose of Bentyl.  Not sure what that's about, but I just ate a small snack.


Not sure if it is the same thing but I get a pain at or around the belly button sometimes and a nurse was concerned that it could be a hiatal hernia.


----------



## MissLeopard83

ronroush7 said:


> Not sure if it is the same thing but I get a pain at or around the belly button sometimes and a nurse was concerned that it could be a hiatal hernia.


When the GI doc did my upper endoscopy, he did not find a hiatal hernia.  

This morning, I had some sharp, crampy pain in my left upper abdomen whenever I took a deep breath.  I had taken a Bentyl capsule about 10 minutes before the onset, so it lasted about 5-10 minutes before the Bentyl kicked in.  It felt like something was moving (I'm guessing food).  I'm really curious to see what is found during my colonoscopy in 8 days.  The doctor mentioned that he thought I might have inflammation in my transverse colon, which seems likely given the symptoms I've experienced (pain moving from right to left and then down).


----------



## Kevin_61

First of all I'd like to say I hope everyone here is doing good today. 
I hope you are feeling better Ron and no more bleeding!     I guess I feel my bowel issue isn't much compared to some here!  

    I was tested for Crohn's and the Dr said It Looks like I have it or something about my blood being at that point but then the last time she goes on like well We aren't completely sure!    

 Lizzness doesn't help me and I forget the other one (Free Sample) she started me on, only goes for a mere $$800.00 a bottle!   anyhow it didn't help either.  They didn't really hurt me but made me feel like I had more gas and bloated so I am not on anything except prune juice and some Miralax when I can afford it and of course only once a week or two weeks the Milk of Mag.

 Crohn's Ibs and Ibd and I know it is a mess down there, I had a bad night with gas and bloating and late afternoon I took a good dose of Milk of Mag and I know I don't need to use it too often, it sure gets all out but then it is sore and swollen and with the swollen feeling then you aren't sure if you are empty down there!    
Then it is GAS during the day,  I feel SOOOOOooo Happy when I finally FART!   It's like Hallelujah!  
      Then I so easy get gas again it seems even from drinking water!         I am going to just have some Campbell's Chicken and Rice soup today and No crackers in it and broth and tea and liquids.      Somedays I just wish I could have the whole darn Anaconda removed down there and be fed by intraveinously!   (However you spell it!)     Just to check in and wishing you all here a good day and hope your symptoms aren't too severe!


----------



## MissLeopard83

TMI warning below!  




This morning has been kind of rough.  My work is renovating the building and we are short on bathrooms during this phase.  Sometimes, I have to walk to another part of the building if I'm not able to wait for someone to leave the one closest to me.  This morning, I had a painful BM (4 on the Bristol chart).  I wasn't straining or anything, but it feels like something is raw down there and it burns.  Unfortunately, there were no paper towels at the moment, so I wasn't able to adequately clean up, which made it even worse (I used to carry wipes with me, but everyone watches what you are doing here, so that's embarrassing).  The second BM was type 5 on the chart and I felt like I was having the constipated form of D (TMI, I know).  It really burned again, but the other bathroom I was using had paper towels so I was able to get some relief.

Anyway, I'm not sure if it's a tear or a hemorrhoid, but it feels like it's more to the left side.  It doesn't hurt to sit on my chair, thankfully.  I'm glad I have some A+D ointment with me.  I love that stuff.


----------



## Kevin_61

MissLeopard83 said:


> TMI warning below!
> 
> So sorry for your issues that are going on!   I am laying down now flat on my back, Last night was. Rough!   Just had some prune juice and a big mug of instant coffee with a peppermint  tea bag.    (Coffee_tea).     Drinking it right now!     Helps me Fart!     I know there's more than just GAS., But I've already sat on the toilet and STRAIN Too much and only get a few little_JOE TURDS.    So I'm constipated to some degree.     As. long as I can still Fart then I know it's not complete blockage!     I also have a pretty good Rectal Prolapse,. So usually after anywhere from 20 min to an hour and a half of toilet time I have to push my butt back up there!      So even if I'm empty,with this prolapse causes it to feel that you gotta bunch up there,OR a big trapped Fart!.........I am glad that I'm not alone with these Bowel Issues!
> I also quite often do a SITZBATH for my sore and inflamed rear_end.
> 
> 
> This morning has been kind of rough.  My work is renovating the building and we are short on bathrooms during this phase.  Sometimes, I have to walk to another part of the building


----------



## ronroush7

Sorry for what you guys are going through


----------



## Kevin_61

ronroush7 said:


> Sorry for what you guys are going through



Thanks! Ron!      I have since this morning decided for the next week to just have my warm chicken or beef broth,Jello,water,tea,Sprite or Root beer, maybe at the most an Activia s,.  Oh! , And get some Ensure"s!          :yrolleyes::yrolleyes::yrolleyActivities


----------



## MissLeopard83

I am so tired today, I felt like I was going to fall asleep at the lunch table.  I don't think I got good sleep last night at all and I know I went to bed later than I should have.  I am definitely paying for it.  I'm just trying to keep busy at work so the last 4 hours will not take forever (I get off at 5pm), but it's difficult.


----------



## Ann Morgan

Well, today I am feeling scared. This is not because of my Ulcerative Colitis, but because I MAY have to have my thyroid removed. I have nodules that are on my thyroid and they are growing. I recently had a thyroid ultrasound. But I will get a needle biopsy in November. The decision to do surgery will be determined after the biopsy. My Endocrinologist is great, but I suffer from extreme anxiety. When a doctor uses the word "surgery" and "cancer" I get quite worried. 

Thanks for listening, even though my post wasn't about my UC symptoms ( I will save that for another day ) !!!


----------



## ronroush7

Ann Morgan said:


> Well, today I am feeling scared. This is not because of my Ulcerative Colitis, but because I MAY have to have my thyroid removed. I have nodules that are on my thyroid and they are growing. I recently had a thyroid ultrasound. But I will get a needle biopsy in November. The decision to do surgery will be determined after the biopsy. My Endocrinologist is great, but I suffer from extreme anxiety. When a doctor uses the word "surgery" and "cancer" I get quite worried.
> 
> Thanks for listening, even though my post wasn't about my UC symptoms ( I will save that for another day ) !!!


Wish you the best.


----------



## Ann Morgan

Thank you Ron : - )


----------



## ronroush7

Welcome.


----------



## MissLeopard83

Today was the first day back to work after 2 days off (colonoscopy prep and scope procedure).  I don't think the Propofol had completely worn off and I felt somewhat sedate today.  It was a chore to stay active today and I wanted to take a nap so bad (something I'm getting ready to do in a few minutes).  It didn't help that I barely got any sleep yesterday after the procedure because 2 contractors came out to our house - garage door repairman and window installer company.  I'm living at home for the time being and my mom took the day off, so my parents thought it was a good time to bring them out.  I had an argument with my mom because she thought the window man would have to come in my room to measure the window and I was not getting changed for anyone.  Our dog wouldn't stop barking either.  I also had REALLY bad D from the prep being in my system still and the internal hemorrhoids were literally killing me.  I thought I was crapping razor blades and I wanted to scream it hurt so bad.  My dad, fortunately, went to the drugstore (no driving for me yesterday) and got some Preparation H which definitely helped in combination with cortisone cream.  I also decided it was time to take some anti-diarrheal medicine because I was tired of the extreme pain and I was feeling dehydrated.  I took some Kaopectate (3 caplets did the trick).  It made me constipated, for sure, but gave my hemorrhoids enough time to heal.  I also saw a little bit of watery blood when I wiped my bottom today (wanted to make sure everything was alright), which the nurse warned me about due to the biopsies and polyp removal.  It was very, very light, so I wasn't worried.  I feel better now that I'm home and I'm so glad tomorrow is Friday.


----------



## MissLeopard83

The last 2 nights, I've gotten over 9 hours of sleep which have certainly helped.  The only thing is that I meant for it to be a nap both times, so I set my alarm clock so I would get up and take my medicine and do anything necessary that I needed to do before going back to bed.  I've missed taking my Bentyl 2 nights in a row at bedtime, so I have to double up on it the morning after since my symptoms get worse without it.

I'm getting my hair cut today at noon and I plan to go see my grandmother who haven't seen in over a month, which I don't like that it has been that long.  I've just been so busy with work that my weekends fill up with other stuff and I have to put our visits to the side.  I really want to see her today, though.


----------



## ronroush7

MissLeopard83 said:


> The last 2 nights, I've gotten over 9 hours of sleep which have certainly helped.  The only thing is that I meant for it to be a nap both times, so I set my alarm clock so I would get up and take my medicine and do anything necessary that I needed to do before going back to bed.  I've missed taking my Bentyl 2 nights in a row at bedtime, so I have to double up on it the morning after since my symptoms get worse without it.
> 
> I'm getting my hair cut today at noon and I plan to go see my grandmother who haven't seen in over a month, which I don't like that it has been that long.  I've just been so busy with work that my weekends fill up with other stuff and I have to put our visits to the side.  I really want to see her today, though.


Hope it work's out.


----------



## MissLeopard83

ronroush7 said:


> Hope it work's out.


Today has been pretty good so far.  I got my hair cut and I think my stylist did a GREAT job.  I've been seeing her since February and she listens and does exactly what I want.  I think this is the best she's ever done.  

Anyway, my grandmother was out of the house, so I'm waiting until she gets back home to visit her later this afternoon.  I may take a nap before I go over there.


----------



## ronroush7

Great


----------



## MissLeopard83

I just woke up from my nap with a "fire in the gut" and urgent need for the bathroom.  I've come to the conclusion that I just cannot digest red meat.  I had a free coupon for Moe's for my birthday next week and my favorite is the steak earmuff (the other meat options are not as good).  Well, I'm paying dearly for it.  I thought it was a coincidence last time that I had a gut ache, so I decided to try it again.  Bad idea...  I guess I'm not going to my grandmother's house today after all.


----------



## ronroush7

MissLeopard83 said:


> I just woke up from my nap with a "fire in the gut" and urgent need for the bathroom.  I've come to the conclusion that I just cannot digest red meat.  I had a free coupon for Moe's for my birthday next week and my favorite is the steak earmuff (the other meat options are not as good).  Well, I'm paying dearly for it.  I thought it was a coincidence last time that I had a gut ache, so I decided to try it again.  Bad idea...  I guess I'm not going to my grandmother's house today after all.


So sorry


----------



## ronroush7

Has anyone heard from Christi lately.


----------



## ronroush7

Not feeling well today.


----------



## Christi

Hi ron hope you feel better soon


----------



## Starnett

Hi everyone. 

New to this thread which I've just found. Great idea by the way, I feel OK to post here about day to day feelings rather than starting new threads or clogging others up.

So today for me has been a mixed bag. I've been very happy this week because I'm in a place I love the most (on holiday in Torquay, Devon, UK).

But right now I feel awful as I've obviously eaten some gluten, to which I have a severe intolerance. I've been a good boy, eating what I should and being extra careful when out and about. I've enjoyed some lovely gluten free meals (though one either yesterday or today was not so gluten free).

I've had a great week so far and have felt good too but now I'm tired, fed up, in pain and developing a long term relationship with the toilet in the apartment oo:

On the plus side, whatever food caused this I really, REALLY enjoyed. And we go home Friday so it's not spoiled the holiday too much! 

I'm undiagnosed right now, whatever all this is. Got a barium follow through next week so that's something to look forward to :thumleft:

Thanks for listening / reading!

Andy


----------



## Starnett

ronroush7 said:


> Not feeling well today.


Hi Ron

Just seen your post. Hope you start to feel better soon. I'm in the same boat after some food mistake. 

Take care and rest up

Andy


----------



## ronroush7

Thanks.  Depressed


----------



## ronroush7

Starnett said:


> Hi Ron
> 
> Just seen your post. Hope you start to feel better soon. I'm in the same boat after some food mistake.
> 
> Take care and rest up
> 
> Andy


My stomach is off and on.  I have a call into my doctor because I have been on Humira about four months now.  I am down right now.  My father has Alzheimer's.  They just found one artery completely corroded.  They are afraid if they operate something will break loose.


----------



## ronroush7

You rest up too Starnett.


----------



## MissLeopard83

Felt kinda yucky this morning with some weird lower GI pain that was instantly followed by an urgent need to use the bathroom.  Now, I'm at home and finished my dinner.  Now, my right upper abdomen is full and sore.  Started Pepogest tonight, so I hope it helps on top of the Bentyl.  My breath smells minty already, so I hope that doesn't mean it has opened up in my stomach...

Anyway, I saw two beautiful rainbows today.  The first was on my way home from work and it was  FULL rainbow!  My mom spotted the other on her walk and called me at home to tell me to look towards the river.  I almost didn't see it until I walked to the edge of the yard and around a tree.  I got pictures of both (not the whole FULL rainbow, though, as it was too big).  VERY neat!


----------



## ronroush7

Hope you feel better soon,MissLeopard.


----------



## Starnett

So sorry to hear that Ron. My partners Grandad has Alzheimer's too and it's got to the stage now where he his not recognising us anymore. I really feel for you, it's so tough on those around them. 

I'm still really off this morning. If I was at home I'd just rest all day on the sofa but I'm gonna have to try to put a brave face on as I don't want to spoil the last day of the holiday. I'm lucky that we're on summer break right now so I've got plenty of time off to rest. 

Sending my support to you Ron, hope you're feeling better soon and that your Dad is ok.


----------



## MissLeopard83

I just woke up a little while ago and feel absolutely yucky.  I went to bed around 10pm last night because I felt the same way and wanted to get to sleep.  This morning, my lower gut and my left leg on the thigh and knee area hurts.  I really don't want to call-off at work because I'm off tomorrow for 2 doctor's appointments.  I've only ever called off for the whole day once for a bad GI bug that left me doubled-over in pain.  I've been late sometimes for unavoidable things like car trouble, but I hate missing work.  I wish I could take some Tylenol right now, but I just took my thyroid medication 20 minutes ago and I have to wait a full hour.  I'm hoping I can make it the whole day.


----------



## ronroush7

Starnett said:


> So sorry to hear that Ron. My partners Grandad has Alzheimer's too and it's got to the stage now where he his not recognising us anymore. I really feel for you, it's so tough on those around them.
> 
> I'm still really off this morning. If I was at home I'd just rest all day on the sofa but I'm gonna have to try to put a brave face on as I don't want to spoil the last day of the holiday. I'm lucky that we're on summer break right now so I've got plenty of time off to rest.
> 
> Sending my support to you Ron, hope you're feeling better soon and that your Dad is ok.


Thanks


----------



## Robertp

Really depressed and sad, the though that I would be dead by now without medicines and that I have my whole life with this shit is just unbearable. I'm 23 years old almost all my peers get to enjoy life and not have to buy medical insurance among other things.


----------



## ronroush7

Robertp said:


> Really depressed and sad, the though that I would be dead by now without medicines and that I have my whole life with this shit is just unbearable. I'm 23 years old almost all my peers get to enjoy life and not have to buy medical insurance among other things.


I am sorry.  Sending support and prayers.


----------



## ronroush7

The last two days, I have felt pressure but not able to go to bathroom.  Yesterday, I was having gas pains.


----------



## Megeraldo3

It's hard to see so many people dealing with similar things an everyone is just as unhappy an in pain everyday like me. I don't have Crohn's or IBS but I have a rectovaginal fistula and an ileostomy with a huge para hernia. I have had 11 surgeries so far in a yr an 5 mo. This last one was a gracilis muscle flap. An I had that 2 mo. Ago an an passing stool an blood everyday. I'm on Flagyl an Cipro. An the Flagyl is so bad it makes me feel worst then the actual problems I'm going threw. I'm on pain meds everyday an see a pain management clinic once a mo. I hate meds I just want to be off them all already. I haven't been able to find a support group other then this that has similar cases. It's ruining my marriage an makes me so depressed everyday. I read the book The Secret an it has helped me with trying to be positive an sending out positive  energy really good book. I also read the bible to help with my marriage. Everyday is a new day an today I'm going to be happy no matter what. I have been up trying to clean it's really hard but I told myself to take as many breaks as i need to. I am 37 an it breaks my heart to see so many young people in there 20s having to deal with such a huge medical condition that effects our quality of life. Bob marley said " you never know how strong you are until being strong is your only choice". An I would have to agree with him. I have been doing so much research about these medical conditions an it has helped with how i eat now an other good info. i hope everyone has a blessed day an trys their best to stay positive.


----------



## ronroush7

Megeraldo3 said:


> It's hard to see so many people dealing with similar things an everyone is just as unhappy an in pain everyday like me. I don't have Crohn's or IBS but I have a rectovaginal fistula and an ileostomy with a huge para hernia. I have had 11 surgeries so far in a yr an 5 mo. This last one was a gracilis muscle flap. An I had that 2 mo. Ago an an passing stool an blood everyday. I'm on Flagyl an Cipro. An the Flagyl is so bad it makes me feel worst then the actual problems I'm going threw. I'm on pain meds everyday an see a pain management clinic once a mo. I hate meds I just want to be off them all already. I haven't been able to find a support group other then this that has similar cases. It's ruining my marriage an makes me so depressed everyday. I read the book The Secret an it has helped me with trying to be positive an sending out positive  energy really good book. I also read the bible to help with my marriage. Everyday is a new day an today I'm going to be happy no matter what. I have been up trying to clean it's really hard but I told myself to take as many breaks as i need to. I am 37 an it breaks my heart to see so many young people in there 20s having to deal with such a huge medical condition that effects our quality of life. Bob marley said " you never know how strong you are until being strong is your only choice". An I would have to agree with him. I have been doing so much research about these medical conditions an it has helped with how i eat now an other good info. i hope everyone has a blessed day an trys their best to stay positive.


Have you had surgery for the hernia?  Have you discussed with your doctor about what the Flagyl is doing to you?  He might need to switch medicines on you.


----------



## Megeraldo3

ronroush7 said:


> Have you had surgery for the hernia?  Have you discussed with your doctor about what the Flagyl is doing to you?  He might need to switch medicines on you.



No not yet, my Dr dosent want to mess with the hernia untill he does the ileostomy reversal. An yes I told him about the flagyl but he informed me it's the only meds that take away colon infections an it can't be changed but that if it don't work he might have to do liquid injection shots or stay in the hospital for drip iv meds for a few days. But that's all I know. I need to know why I'm having so much trouble with my leg from the gracilis muscle being cut an moved.


----------



## ronroush7

Megeraldo3 said:


> No not yet, my Dr dosent want to mess with the hernia untill he does the ileostomy reversal. An yes I told him about the flagyl but he informed me it's the only meds that take away colon infections an it can't be changed but that if it don't work he might have to do liquid injection shots or stay in the hospital for drip iv meds for a few days. But that's all I know. I need to know why I'm having so much trouble with my leg from the gracilis muscle being cut an moved.


I hope you get better soon.


----------



## Megeraldo3

Robertp said:


> Really depressed and sad, the though that I would be dead by now without medicines and that I have my whole life with this shit is just unbearable. I'm 23 years old almost all my peers get to enjoy life and not have to buy medical insurance among other things.


You so young an I feel for u, these problems make us all depressed I know i am depressed also an feel like a prisoner in my own body an in my own house. I will keep u in my thoughts an prayers an hope that u will find comfort in knowing ur not alone. This support group has already made a big difference for me an have only been in it a couple days now an now I don't feel so alone. God bless u


----------



## duh panda

Been a while since dropping into the forum here. A bit scatterbrained at the moment with many changes and progress happening at once. But today? Today I'm just out of energy and out of my reserves. Headache, guts being squirrely, joints hurt, no appetite, just a generally blahh and "crohnsie" kind of day. 

Been pushing both physically and mentally. Hoping to remove methotrexate from my med mix this next week, I'm done with it and called in last week to let the office know I'm no longer compliant and need an alternative option to try. Second time I've ever kicked a drug without prior authorization, but I can't tolerate side effects and none of the options attempted to treat them have helped enough. Anxious, guess I'm anxious about it all but doc. wont likely be surprised since I've been asking to stop taking it for 6 months. 

Working on a 1500 word essay for a contest. The $3,000 prize is highly motivating, and I'm getting to write about Crohn's while addressing the prompt. Not the first time, but certainly the first time I'm looking to publish my experience with Crohn's. Hopefully I'm doing it justice. I have 3 weeks left to take my current draft to publishing quality. A fair chunk of it has been writing/ thought of while in the bathroom. Lol!


----------



## ronroush7

At Urgent Care.  A lot of pain in my left leg


----------



## duh panda

ronroush7 said:


> At Urgent Care.  A lot of pain in my left leg


Ron, I hope they can help you, lower the pain levels and find a solution for what's going on. Thinking of you.


----------



## ronroush7

Thanks


----------



## ronroush7

They said muscle pain but I think it is more.


----------



## duh panda

ronroush7 said:


> They said muscle pain but I think it is more.


Did they have any suggestions to help prevent or treat it? Other than rest/ ice/ heat basics?


----------



## ronroush7

Just Tylenol.  I am going to call my gi Monday.


----------



## duh panda

ronroush7 said:


> Just Tylenol.  I am going to call my gi Monday.


 Good idea. 

In the mean time, if it is muscle pain and continues persisting over the weekend Arnica cream may really help if you don't already use it. I find it reduces joint, skin and muscle pain as well as inflammation better than Tylenol. Bit pricey as a lotion/ cream, but a little goes a long way and can usually be found in any drugstore. Take care.


----------



## ronroush7

U too


----------



## ronroush7

Feels a little nunb sometimes


----------



## Ann Morgan

Right now......very bloated and rumbling in my digestive tract. I am suffering from stress because I am going to have a fine needle aspiration of my thyroid in November and I am terrified of this......having a needle jabbed into my neck while I am awake ! I have nodules on my thyroid that are growing. I am afraid they may do a thyroidectomy too. Thanks for listening.


----------



## Ann Morgan

So, who can really figure out what causes my fatigue !  Is it........my Ulcerative Colitis.....my thyroid troubles.....my problems with sleeping......my depression.....

Yikes, I get TIRED just trying to figure it all out  !


----------



## ronroush7

Ann Morgan said:


> So, who can really figure out what causes my fatigue !  Is it........my Ulcerative Colitis.....my thyroid troubles.....my problems with sleeping......my depression.....
> 
> Yikes, I get TIRED just trying to figure it all out  !


Have you had your blood levels tested?


----------



## Ann Morgan

Megeraldo3 said:


> No not yet, my Dr dosent want to mess with the hernia untill he does the ileostomy reversal. An yes I told him about the flagyl but he informed me it's the only meds that take away colon infections an it can't be changed but that if it don't work he might have to do liquid injection shots or stay in the hospital for drip iv meds for a few days. But that's all I know. I need to know why I'm having so much trouble with my leg from the gracilis muscle being cut an moved.


Flagyl is not the only medication to treat intestinal infections. My Gastroenterologist prescribed Vancomycin for my C-diff intestinal infection last year. I took the prescription pills for 2 weeks. The prescription WAS expensive and required a Pre-Authorization from my Health Insurance Company, they paid 66% of the cost and I paid 34%. I believe that Vancomycin CAN be given to a patient via an IV. Flagly did NOT work for me. I hope you feel healthier soon. : - )


----------



## Ann Morgan

Ron: My Primary Care Physician will draw blood in September, just my once a year "Comprehensive Metabolic Panel". I had blood tests recently in ER and I was not informed of any problems. But I have thyroid problems and that can affect my energy levels. My Endocrinologist does a blood draw every 6 months ro check my TSH.      : - )


----------



## ronroush7

Ann Morgan said:


> Ron: My Primary Care Physician will draw blood in September, just my once a year "Comprehensive Metabolic Panel". I had blood tests recently in ER and I was not informed of any problems. But I have thyroid problems and that can affect my energy levels. My Endocrinologist does a blood draw every 6 months ro check my TSH.      : - )


I thought maybe you might need iron or b12. Off of subject but I have hypothyroidism.


----------



## kikig

Right now, weird. I've been having my albumin infusions and now 100mg of iron (I am parentally iron intolerant) - I hope I won't get my usual iron reactions. My stomach has that constant empty feeling for the last 4 days - I literally cannot eat enough but my stomach wants MORE.
Thank god for my port (a welcome hangover from my chemo) - it just takes so much stress out of having IV infusions


----------



## ronroush7

My leg pain has shifted from the side of the leg to the front.


----------



## Kevin_61

I hope you get feeling better real soon! 
Besides my butt aching I get some back pains, but not too severe.
My Mom has tingling in her legs and the Dr acts like it isn't a big deal.
I got My Dad once a hand massager or hand vibrator and my Mom uses that too now and then on her legs,  she goes on that they don't really hurt but just a tingling sensation and it sometimes drives her nuts.   Hope you get feeling better!


----------



## ronroush7

Some rectal pain.


----------



## Kevin_61

I sure know how that is!  I know I'm not supposed to strain, but OTHERS just do not understand the problem!
Wishing you the very best!


----------



## ronroush7

Thanks


----------



## kikig

Wicked heartburn from my iron infusions, feel like the lining of my stomach is being peeled off with acid 
Last time I had this, it was actually what was happening due to chemotherapy


----------



## ronroush7

Prayers and support


----------



## kikig

having one of those Mondays where I feel like I need to get a PA to organize my medical appointments and followups - like a full time PA. this morning was crap, i missed two appointments as my intestines are unhappy and then had to make a fleet of phonecalls for new appointments...as well as deal with supreme childish behaviour by two of my colleagues :/


----------



## ronroush7

kikig said:


> having one of those Mondays where I feel like I need to get a PA to organize my medical appointments and followups - like a full time PA. this morning was crap, i missed two appointments as my intestines are unhappy and then had to make a fleet of phonecalls for new appointments...as well as deal with supreme childish behaviour by two of my colleagues :/


I am sorry


----------



## ronroush7

Feeling a little numbness in my left leg


----------



## CG_ Digger

Hello  I'm new to the group. I was diagnosed with Crohns in January of this year. I was in the hospital last year for about a week in October. After many test and two doctors I got the help I needed. The morning time is the worst. After a bowel movement I don't want to do anything but I'm usually at work so I just suffer through it. I work around fifty hours a week and I'm a maintenance man. I have debated on if I need to do something different because the last few months have been a struggle. Also on the weekends my stomach stays messed up. I think it because on on a schedule during the week and on the weekend everything changes. Does anyone else have problems with their stomach when their schedule changes? I had many bath room trips yesterday today has been better but after supper I had some stomach aches and gas.


----------



## ronroush7

Sounds like it might be stress and that can have an effect on IBD.


----------



## ronroush7

Hope you feel better soon.


----------



## Christi

Please help me I am not feeling well I am feeling sick to my stomach nausea and im vomiting I have some stomach pain and im feeling very weak and also very embarrassing my stomach just let go making me shit my pant please help


----------



## ronroush7

Christi, I am so sorry .  I hope you feel better soon.  Get some rest


----------



## Christi

Thank you ron been resting the whole day , I will see how it goes and then go see gi sooner


----------



## ronroush7

Christi said:


> Thank you ron been resting the whole day , I will see how it goes and then go see gi sooner


Take care and let us know how you are.


----------



## ronroush7

I don't know if it is constipation but I keep feeling pressure but I have only been able to go once.


----------



## embyrr

Hey Ron ^ How are you doing today apart from that?

Feeling okay today. Low on energy with pressure in the large intestine but overall feeling motivated and staying on a positive note. 
remission was confirmed by blood/stool tests and recent colonoscopy.


----------



## ronroush7

I just got up but yesterday and the night before that I was going to the bathroom a lot.  Yesterday, I was having pain in the abdomen.  Earlier, I had some pain in my leg.


----------



## Tony H

Not feeling too bad this morning , switched from humira to remicade two days ago and discharged from the hospital yesterday , bm's still a little frequent but hopefully its will get better soon , feeling a little weak as well but thats probable from six days in hospital ,
hey Ron sorry to hear your not so well  .


----------



## ronroush7

Tony H said:


> Not feeling too bad this morning , switched from humira to remicade two days ago and discharged from the hospital yesterday , bm's still a little frequent but hopefully its will get better soon , feeling a little weak as well but thats probable from six days in hospital ,
> hey Ron sorry to hear your not so well  .


Thanks , Tony.  Better today.


----------



## Christi

Ron I hope you are okay? Im still not feeling well having diarrhoea 8 to 10times a day. Itestines are so angry


----------



## ronroush7

Christi said:


> Ron I hope you are okay? Im still not feeling well having diarrhoea 8 to 10times a day. Itestines are so angry


I am sorry, Christi.  Dealing with neuropathy and yesterday was abdominal pain and diarrhea.


----------



## Tony H

Feeling a bit better today ,less urgency so far , but it still :stinks: a lot :shifty:


----------



## ronroush7

Tony H said:


> Feeling a bit better today ,less urgency so far , but it still :stinks: a lot :shifty:


Glad you are feeling better.


----------



## ronroush7

Feel like I could be in a flare.  Mostly diarrhea.


----------



## Tony H

not as good as yesterday today , sorry to hear you are starting to flare up as well Ron , just counting down the days for the second infusion of remicade , One week to go ,
Sometimes the only thing that keeps me sane is this website ,
day or night there's always someone around ,
and hearing some of the stories makes me realise how lucky I am comparatively speaking , I really dont know how the parents of the kids with this horrible disease cope , it s hard enough as an adult to cope but to watch your child suffer and still have a positive outlook on life , that takes strength .


----------



## ronroush7

Tony H said:


> not as good as yesterday today , sorry to hear you are starting to flare up as well Ron , just counting down the days for the second infusion of remicade , One week to go ,
> Sometimes the only thing that keeps me sane is this website ,
> day or night there's always someone around ,
> and hearing some of the stories makes me realise how lucky I am comparatively speaking , I really dont know how the parents of the kids with this horrible disease cope , it s hard enough as an adult to cope but to watch your child suffer and still have a positive outlook on life , that takes strength .


Tony, I hope you feel better soon


----------



## Tony H

not too bad today , a lot of bms in the early morning but a lot better in the day so far , its been decided im to have surgery , so im awaiting the colorectal surgeon to give me more info and the timing , but my gi is pushing for me to have it on this admission in case i deteriorate more  , so hopefully I will be sorted by the weekend and start a hopefully great new chapter of my life , free from short sprints and everything that entails , 
so overall im not too bad today .


----------



## MizzSarah

Today I feel defeated. Last colonoscopy I had said I was in remission but I'm having a hard time accepting that. It's hard to believe those words when for months all my blood came back normal yet I indeed had Crohn's. Can I really trust those words when for years I was told there is nothing wrong with you or your just seeking attention.

I haven't slept all night from anxiety. 

Yesterday my hours were cut again at work(2 times this month) and now I'm back on call. Unpredictable and my sick time will not be paid for. I had a great thing going at work. I made connections and I was part time. Something I was advised to take.

Now I'm back at square one 

Hope someone is having better days


----------



## Tommy21bn

Tony H said:


> not too bad today , a lot of bms in the early morning but a lot better in the day so far , its been decided im to have surgery , so im awaiting the colorectal surgeon to give me more info and the timing , but my gi is pushing for me to have it on this admission in case i deteriorate more  , so hopefully I will be sorted by the weekend and start a hopefully great new chapter of my life , free from short sprints and everything that entails ,
> so overall im not too bad today .


What do they want you to have?


----------



## ronroush7

MizzSarah said:


> Today I feel defeated. Last colonoscopy I had said I was in remission but I'm having a hard time accepting that. It's hard to believe those words when for months all my blood came back normal yet I indeed had Crohn's. Can I really trust those words when for years I was told there is nothing wrong with you or your just seeking attention.
> 
> I haven't slept all night from anxiety.
> 
> Yesterday my hours were cut again at work(2 times this month) and now I'm back on call. Unpredictable and my sick time will not be paid for. I had a great thing going at work. I made connections and I was part time. Something I was advised to take.
> 
> Now I'm back at square one
> 
> Hope someone is having better days


Sarah, last year, they had to do an enterography on me twice.  The first time they said I was in remission.  I was still having symptoms so they repeated it and found out I had active disease.  If I am repeating myself, forgive me.  I hope you get answers soon.


----------



## ronroush7

I have had diarrhea since last night.


----------



## duh panda

There's been more up days then down days, but today's one of those mixed days. Anxious and edgy for no reason and energy is dragging terribly, I'm ready for a nap. Could be an infection, doc's been concerned about white blood cell count but I think this drag is more from pushing my activity level. Slight uptick in pain/ discomfort and ongoing feeling of instability from med. adjustments but the gut itself has been holding to a generally normal pattern which has been feeling like a true luxury. Been feeling really happy about current activity level, and having the ability to enjoy a bit of the world again without needing constant stops for the bathroom or waves of pain.


----------



## ronroush7

Really tired.  Had diarrhea most of last night .


----------



## ronroush7

Had fecal incontinence last night.  Didn't get up for good until one thirty.  Have been to the bathroom four times.  Not feeling well.


----------



## Aydmen

I was fine yesterday and the day before, but today just went downhill. The change in weather has me beaten down, and I just can't eat anything without feeling sick. I took tomorrow off, so luckily I'll stay in bed...


----------



## ronroush7

Aydmen said:


> I was fine yesterday and the day before, but today just went downhill. The change in weather has me beaten down, and I just can't eat anything without feeling sick. I took tomorrow off, so luckily I'll stay in bed...


Hope you feel better


----------



## Aydmen

ronroush7 said:


> Hope you feel better


Thanks  you too!


----------



## ronroush7

I can't empty myself today


----------



## MizzSarah

I'm exhausted. Work week starts up again today and I haven't slept much the entire weekend. Maybe 4 hours over the 2 days. I haven't been able to take my Meds as my entire household is sick. Thanks to my immune system I am sick again too. I'm always sick...I can't remember a week in months that I haven't been ill.


----------



## ronroush7

MizzSarah said:


> I'm exhausted. Work week starts up again today and I haven't slept much the entire weekend. Maybe 4 hours over the 2 days. I haven't been able to take my Meds as my entire household is sick. Thanks to my immune system I am sick again too. I'm always sick...I can't remember a week in months that I haven't been ill.


I am so sorry, Sarah.  Hope for a quick diagnosis and recovery.[emoji4]


----------



## ronroush7

Has anyone ever felt pain in the rectal area before going to the bathroom?


----------



## Tony H

ronroush7 said:


> Has anyone ever felt pain in the rectal area before going to the bathroom?


I used to get that a lot Ron , sharp intense pain , not nice  , sorry you are not doing great Ron .


----------



## ronroush7

Tony H said:


> I used to get that a lot Ron , sharp intense pain , not nice  , sorry you are not doing great Ron .


Thanks,Tony.


----------



## Christi

Sorry for being so quiet having a really tough time , so I just want to update. I went for a scope last week turns out my disease are very active so that they could not get the scope through no matter what they did so I have to go for another scope next month again with smaller equipment this time


----------



## ronroush7

Christi, it is good to hear from you.  I hope that they can get some answers for you.


----------



## Christi

Thank you ron im still not in remission and still on pred and yet it gets worse everyday. Im hopeless now im so depressed with everything. Walking in pain and feeling sick every day is no way to live. Ron I see you went for surgery whats going on are you okay?


----------



## ronroush7

Squamous cell cancer.  I am okay


----------



## Christi

I also do need some advice for my next prep , baby wipes dont help me either it hurts so much I cant even walk


----------



## Christi

Im glad your okay, please keep us updated. Im so sorry for what your going through


----------



## ronroush7

Have you tried Tucks?


----------



## Christi

I dont know what that is , I have done the wipes the cream zit bath but nothing


----------



## ronroush7

Christi said:


> I also do need some advice for my next prep , baby wipes dont help me either it hurts so much I cant even walk


I get my bandages off in a week.  They did a skin graft on my leg.


----------



## Christi

Hope that the graft looks good and no complications are you still in hosp


----------



## ronroush7

No.  It was outpatient


----------



## Christi

Thats good so at least you can recover at home


----------



## Christi

Ron ill pop in again tomorrow time for bed now im so tired I have no energy at all, get well soon and take care


----------



## ronroush7

Thanks


----------



## MizzSarah

At my wits end. I'm tired and my bones feel about ready to snap like a twig. I have yet another chest infection(I have at least 4 in a month) I took 2 days off of work end of last week and I had to take another day off today. I dread leaving my bedroom as I'll get questions yet again about why I'm home. My mom just had hip surgery and is already moving around like a pro and I'm--- a big failure.


----------



## ronroush7

MizzSarah said:


> At my wits end. I'm tired and my bones feel about ready to snap like a twig. I have yet another chest infection(I have at least 4 in a month) I took 2 days off of work end of last week and I had to take another day off today. I dread leaving my bedroom as I'll get questions yet again about why I'm home. My mom just had hip surgery and is already moving around like a pro and I'm--- a big failure.


Sarah, you are not a failure.


----------



## gordan

Great news about your boyfriend!  I used to smoke and think that it helped my stomach situation.  I finally quit 2 years ago and while I still deal with a lot, I'm more equipped to deal with it now.  I'm less tired at least!


----------



## ronroush7

Going to the bathroom a lot earlier in the day.  Having some rectal pain earlier.


----------



## MizzSarah

I've been up since 12 this morning. haven't been able to sleep yet and it's nearly 3pm. Not a good day


----------



## ronroush7

MizzSarah said:


> I've been up since 12 this morning. haven't been able to sleep yet and it's nearly 3pm. Not a good day


I am sorry.


----------



## Catlover96

7 flares 14 days... diagnosed 2 weeks ago... this has been rough. Today has been okay, I just always feel tired and hurt.


----------



## ronroush7

Catlover96 said:


> 7 flares 14 days... diagnosed 2 weeks ago... this has been rough. Today has been okay, I just always feel tired and hurt.


What is your doctor saying?  I hope you get relief soon.


----------



## Catlover96

ronroush7 said:


> What is your doctor saying?  I hope you get relief soon.


Not much. He wants to see the results of the small bowel follow through on Wednesday before he makes anymore treatment decisions. I am on Budesonide.


----------



## ronroush7

For the most part, I am feeling like I keep needing to go to the bathrobe.


----------



## American Wolf

Catlover96 said:


> Not much. He wants to see the results of the small bowel follow through on Wednesday before he makes anymore treatment decisions. I am on Budesonide.


I am on budesonide to it does help with the inflammation my crohns was acting up alot and I had to take it 3 times a day but it went down so I went back to one but lately it's be flaring up I have been nausea bloated and o get hot and cold I'm see my doctor Tuesday hopefully it will clear up soon


----------



## ronroush7

American Wolf said:


> I am on budesonide to it does help with the inflammation my crohns was acting up alot and I had to take it 3 times a day but it went down so I went back to one but lately it's be flaring up I have been nausea bloated and o get hot and cold I'm see my doctor Tuesday hopefully it will clear up soon


Maybe he needs to increase it again for a little while.


----------



## Bufford

I've been sleeping very poorly lately, leaving me totally dead during the day, the main reason why I havn't been around here much lately. I toss and turn all night like a washing machine, not able to find a comfortable position while my legs will not hold still. Otherwise, I am eating and not flaring.


----------



## ronroush7

Hope  things improve soon,  Bufford


----------



## Bufford

I bought a fresh bottle of melatonen to replace the old one that was expired for the past 6 months.  I slept well last night, perhaps the old ones lost their strength.


----------



## Catlover96

I get to have yet another colonoscopy next week. My new gi doc thinks that my old gi doc might have missed something. I am not responding to humira i have been on it since may of this year and i am on as high of a shot regimen as i can be. Looking like i will be switching to entyvio.


----------



## ronroush7

Catlover96 said:


> I get to have yet another colonoscopy next week. My new gi doc thinks that my old gi doc might have missed something. I am not responding to humira i have been on it since may of this year and i am on as high of a shot regimen as i can be. Looking like i will be switching to entyvio.


Hope you are feeling better soon.


----------



## ronroush7

I thought things were improving for me but last night I had a setback


----------



## MizzSarah

It's been awhile since I wrote my feelings down here but here I go. Things have been pretty good besides the fact I have little to no immunity left. My infections are 3x as bad as ever and take forever to pull out of. Over the summer I was able to have no infections from July through September. That was such a huge accomplishment for me since I was literally going weekly to my doctors for antibiotics. Now that I have returned to work(work in schools) I am now fighting my latest infection.  Pneumonia again I'm sure. On top of that I was just recently told by my rheumatologist that I have a narrowing spine---result of countless years of joint issues undiagnosed until later with CD. I had to give my 2 weeks notice to my second job as I am physically unable to meet the demands of that. I basically was scolded by my rheumatologist  for even daring to try to msintsin two physically demanding jobs in my current condition. I just---really want to move out and make something out if my life. I want a house... I want a life at 24 years old. I'm currently in bed now after a stressful working day in so much pain. (This is his I am every day after work) I love my job so I'm going to keep doing it for as long as god will allow it. I hope that I'll besble to keep doing it for many years but at this point I just pray for another day. I'm stressed out because I worry my condition is not being taken seriously. I hate getting mail because each day I keep getting some form of reject letter. My confidence is shot. My anxiety is at the highest high and I just kind of wish--sadly- i could be just left alone in a safe bubble of protection. No one could hurt me there


----------



## ronroush7

Prayers and support


----------



## Lynda Lynda

I ate at a restaurant yesterday, bad idea. I am real sick today. I have suffered with Ulcerative Colitis for 20 years. My old account here was "Ann Morgan." No one has posted here for 4 months. Hope you are feelin better than I am today. Bye. ♡


----------



## MoCo

I haven't posted here in years either. Wandered here because I am in such excruciating pain today. Ironic since I just started with a new gastroenterologist this week. Bad cramps like I haven't had for ages. Oh well, this will pass...no pun intended. Back to working on banking and income tax. Oh, maybe that's why I feel so sick, lol.
Have a great day everyone. Hope you are all pain free!


----------



## ronroush7

MoCo said:


> I haven't posted here in years either. Wandered here because I am in such excruciating pain today. Ironic since I just started with a new gastroenterologist this week. Bad cramps like I haven't had for ages. Oh well, this will pass...no pun intended. Back to working on banking and income tax. Oh, maybe that's why I feel so sick, lol.
> Have a great day everyone. Hope you are all pain free!


Hope you feel better real soon.


----------



## Lynda Lynda

After a week of eating liquids / soft foods I ate Taco Bell food four hours ago. So far, so good.


----------



## Lynda Lynda

MoCo said:


> I haven't posted here in years either. Wandered here because I am in such excruciating pain today. Ironic since I just started with a new gastroenterologist this week. Bad cramps like I haven't had for ages. Oh well, this will pass...no pun intended. Back to working on banking and income tax. Oh, maybe that's why I feel so sick, lol.
> Have a great day everyone. Hope you are all pain free!


Your dog photo made me happy today !


----------



## MoCo

Not sure what is going on. I have been doing well in the two years since I have been diagnosed. On Humira and 6mp, amitriptyline and immodium. My gastro moved away, just met my new one. All of a sudden, the last few weeks have been off and on pain/bloating and severe discomfort. Is this what happens when one or more of the meds stops working? I am doubled over here...have been all day. Thank goodness for snow days off!


----------



## ronroush7

MoCo said:


> Not sure what is going on. I have been doing well in the two years since I have been diagnosed. On Humira and 6mp, amitriptyline and immodium. My gastro moved away, just met my new one. All of a sudden, the last few weeks have been off and on pain/bloating and severe discomfort. Is this what happens when one or more of the meds stops working? I am doubled over here...have been all day. Thank goodness for snow days off!


I would probably call your gi and tell him what is going on.   Let us know what is going on.


----------



## cmack

I agree that you should be seen, keep us posted MoCo. Good luck to you.


----------



## MoCo

Did my Humira shot Thursday night and finally felt better today. We'll see how long this lasts. Thanks for all your concern and support.


----------



## cmack

I'm glad it's helping.


----------



## ronroush7

MoCo said:


> Did my Humira shot Thursday night and finally felt better today. We'll see how long this lasts. Thanks for all your concern and support.


Hope it lasts for a long time


----------



## Lynda Lynda

Wow I am really tired and it is 1:31 a.m. and I think I pushed the hug button on every post here.:sorry: This happens every time I go online and I post too much, I will try to take a break and also get some sleep. .:ybatty::ybatty::ybatty:


----------



## cmack

I hope you had a good rest.


----------



## Lynda Lynda

I erased my original post because it was just me whining. I get my colonoscopy and endoscopy next week so after that I should be able to get some form of treatment for my colon. Take Care. Lynda. :bat: Why is there a bat emoji ?


----------



## ronroush7

The Crohn's disease is getting to me today .  I think it had to do with grease


----------



## Lynda Lynda

ronroush7 said:


> The Crohn's disease is getting to me today .  I think it had to do with grease


You mean fatty foods ?  Yeah, I cannot eat any fatty foods. But I am missing Taco Bell food right now. Don't forget to drink plenty of water to stay hydrated and take it easy. :rosette1:


----------



## ronroush7

Thanks


----------



## cmack

You both have my support.


----------



## Lynda Lynda

Help me. My nurse practitioner told me on Monday to stop taking my pantoprazole pill because it is a proton pump inhibitor and I am having a colonoscopy next week and I think that proton pump inhibitors affect the calprotectin levels and my calprotectin level recently was almost 700. Today I'm severely ill and I called my doctor's office. I took 4 extra strength Gaviscon and I was still severely ill because I have been taking acid reflux prescription medication for years and now I am not taking it. The doctor's office told me to take Zantac twice a day and so I had to drive to the pharmacy by myself and I'm really really sick right now with watery diarrhea. As soon as I got to the pharmacy I had to run to the restroom to have diarrhea and my heartburn and acid reflux are very very bad right now. I had to have a pharmacy gal help me find the medication and because I'm so sick I cried in front of the pharmacy gal. I was so afraid I was going to have diarrhea and vomit at the same time at the pharmacy. I understand the reason for my nurse practitioner to take me off my pantoprazole medication but I am severely ill right now. I'm just sitting here crying. My colonoscopy is in one week and I know I cannot take pantoprazole. I don't know how long it takes for this  Zantac to work but I took 4 extra strength Gaviscon between 2 p.m. and 4 p.m. and at 5 p.m. I took a Zantac. I need to know if anyone has ever felt like this before and I really feel like going to the emergency room right now but I'm going to wait until tomorrow morning because I don't want to panic but I am severely ill right now. I'm going to turn off my phone and cry now goodbye


----------



## cmack

I would go to the ER if you think you have to. I also think getting a ride there would be best. You have my support, I hope things improve.


----------



## Lynda Lynda

I am going to ER
My face is all warm and flushed and my pupils are getting bigger. 
Took Zantac 1 hour ago. 
Waiting for cab.


----------



## ronroush7

Lynda Lynda said:


> I am going to ER
> My face is all warm and flushed and my pupils are getting bigger.
> Took Zantac 1 hour ago.
> Waiting for cab.


Hope you are better soon


----------



## cmack

I'm thinking of you. Take good care.


----------



## Lynda Lynda

Went to ER. Got all checked out. Have a great day.:sheep:


----------



## cmack

I hope everyone is feeling okay today.


----------



## Lynda Lynda

:ghug:


----------



## Lynda Lynda

Bummer, I was so tired today that I slept off and on for 6 hours. I have laundry to wash which means I must drive to a laundromat and this must be done on Sunday or Monday. My Colonoscopy prep is Tuesday and my colonoscopy and endoscopy are on Wednesday. Does this ever happen to you, where you have to sleep during the day because you are so tired? I know that I spent all night at the emergency room on Wednesday so maybe today is the day to catch up with my sleep. It is 7 p.m. right now and I'm still super tired. I've only been able to eat liquids for almost 3 weeks and that is getting so boring and so icky and one night I had a dream about food because in real life I was so hungry. Have a good weekend.


----------



## ronroush7

Lynda Lynda said:


> Bummer, I was so tired today that I slept off and on for 6 hours. I have laundry to wash which means I must drive to a laundromat and this must be done on Sunday or Monday. My Colonoscopy prep is Tuesday and my colonoscopy and endoscopy are on Wednesday. Does this ever happen to you, where you have to sleep during the day because you are so tired? I know that I spent all night at the emergency room on Wednesday so maybe today is the day to catch up with my sleep. It is 7 p.m. right now and I'm still super tired. I've only been able to eat liquids for almost 3 weeks and that is getting so boring and so icky and one night I had a dream about food because in real life I was so hungry. Have a good weekend.


Hope you are better soon,  Lynda


----------



## cmack

You best catch some more ZZzzzz's, then hopefully tomorrow you will have more energy. I strongly dislike it, when I sleep in and then I feel rushed all day. Best wishes to you, Lynda. I hope the rest of the weekend is better.


----------



## Lynda Lynda

Correction: Oh, the reason that the FNP at my Gastroenterologists office told me to stop taking my Pantoprazole prescription acid reflux medication was because she said it is bad for my bones and I have osteopenia/osteoporosis. 

My Endocrinologist takes care of my bones in addition to my thyroid, so I have regular blood draws, bone scans, Vitamin D3 and I've had one Reclast infusion. 

A Gastroenterologist office should not be monitoring my bones and that FNP should just focus on the digestive system !  

♡ Take Care


----------



## thike1966

Hello Everybody, 
I just joined the forum and am pleased to be a part of this.

Today I am battling frustration playing the waiting game again.

Two weeks ago, I rejected Remicade, with seizures of my neck and back every time I sat down for 2 days, followed by massive diarrhea, where everything that what went in came out the same on exit. 

The last time I had it like this was when I first got hemorrhoids and decided to take fiber pills and eat a lot of solids, BIG MISTAKE. When I first went into the hospital ER, it was because I was bleeding so I bad. I had not idea what I was doing to myself with the fiber pills. They felt my hardened stomach and gave me a CAT scan and diagnosed the Crohn's right away.  They wanted to admit me, but they were over booked do to a large bus accident and lots of critical patients. Two days later I went to my new GI doc and was sent back to get admitted. The ER doc told me my intestines had completely shut down and I was four days away from complete organ failure and never going home again. I did not process what this meant for a few months and then it really shook the monkeys out fo my tree, knowing I was so close to death.

So freaked out again,  I called my GI office and spoke to nurse, she called back after consulting with the doc and told me to get back on Prednisone after I they had me go to the lab for more blood work. I already had a follow-up in two weeks, so they didn't schedule a closer appointment. 

The Prednisone worked and kept me out of the hospital. I waited for the appointment with my Physician's Assistant who had been great so far.

She went over my my results and my C-Reacitve Protein which indicates massive swelling is supposed to be 8 and is 186.9. She was upset I waited two weeks to see her, but there were not other appointments available. When I told I was very worried, she said she was worried too and wants me to see one of the Doctors. She wanted to put me on a new drug, which my insurance does not cover and cost thousands of dollars, so she put me on Imuran. Now I'm waiting for another two weeks to see how the new drug works and then see the Doctor. 

4 weeks on Prednisone that drives me insane sometimes. My dose is not very high, but I am very sensitive to it. If was not for this and the anti-diarrhea medicine, I would be back in the hospital. The Imurin does not seem to do much but upsets my fragile digestion. My research on the drug said it could take weeks or months to really work.  

I know, I'm not as bad as many others and better than many others, so I should not despair. Having no energy and playing the Prednisone waiting game, it could be worse.  Even though I take iron, my hemoglobin is still low and that kills my energy.

I see a nutritionist who has me on a lot of Probiotics and vitamins, the D2 is a prescription.  

Regardless, 
Blessings to everyone and me best wishes for everyone to be as healthy as possible. 

Michael

I take 16 medicines right now, that includes supplements.

Predisone 60 mg a day
Imuran 5 mg daily
Metformin 2000 mg daily because Prednisone shoots my blood sugar too high
Linsopril- HCTZ 10/12 mg, Blood pressure every other day, which I used to control with exercise.
Ambien 10 mg to sleep a few hours at night
Florastor Probiotic 4 times a day
Renew Ultimate Flora 50 Billion 2 times a day
Vitamin D2 50,000 iu once a week
Vitamin D3  2500 iu daily
Vitamin B12 5000 mcg daily under my tongue
Vitamin Iron 65 mg daily 
Vitamin Potassium Gluconate 550 mg daily
Lopermide to nearly keep me solid
One A Day, Men over 50 daily
Cortisone Foam up my back door for internal hemorrhoids
Nitroglycerin, hydra-cortisone, lanacane for y external hemorrhiods


----------



## Lynda Lynda

:welcome:Michael


----------



## cmack

Hi Michael,

Welcome to the forum. I'm sorry to hear all the suffering you have been through, this bowel disease stuff is tough to deal with. I'm glad you are being seen by a new GI and have had a diagnosis, that is a very good start. Obviously you know that fiber is a bad idea right now, I hope things improve further with the treatments you have been given. I would tell the doctor about the multi vitamin you take, some of those contain certain synthetic vitamins that are poorly absorbed or can sometimes act as toxins in the body. This can cause gastrointestinal distress or other problems. There are multivitamins you can and probably should take, Dr. Fuhrman makes a good one that is GI recommended You get them at https://www.drfuhrman.com/shop/222/multivitamins I hope you feel better soon, keep in touch.


Regards,

Chris


----------



## thike1966

Thank you and I will check the multi Vitamin. Have a great Day


----------



## Lynda Lynda

It's Tuesday at 1:04am and it is officially my colonoscopy/endoscopy prep day. Clear liquids all day. Four Dulcolax Laxative Pills at 3pm. At 5pm start drinking the Miralax / Gatorade concoction. 

A driver picks me up at 6:30am Wednesday to drive me to my colonoscopy / endoscopy, sit in the waiting room during my procedure and then drive me home......this is a service provided by a company here ( cost to me is $30 an hour. ) 

Since my retired sister didn't stick around town for 4 extra days before her going back to Idaho ( with no explanation as to why she couldn't / wouldn't stay to help her only sister ) I had to hire total strangers from a company to help me out. I'm not rich either, so $90-$120 is a lot of money. Sorry, still feeling hurt and bitter. 

But I now must concentrate on the prep and colonoscopy/endoscopy. 

Spooky : Ha Ha I just read every single post on the BAM thread. I really must be bored !  Reading my old posts was a bit freaky.:eek2:


----------



## Lynda Lynda

:mario2: Why is there a Mario Emoji ?


----------



## cmack

I hope everything goes well today, Lynda.


----------



## Lynda Lynda

cmack said:


> I hope everything goes well today, Lynda.


I had my colonoscopy / endoscopy today. The procedure went well. Will talk more later. Will plug my phone in now. 

Hope everyone felt good today. :heart:


----------



## Lynda Lynda

I did not know where to post this, so I am posting it here.My endoscopy showed gastritis and I need to know how doctors and patients treat gastritis and what is the most common way to treat it. I see my doctor in May but I was just curious if anyone else had gastritis and what do they do about it. Take care and have a good day. :luigi:


----------



## Lynda Lynda

cmack said:


> I hope everyone is feeling okay today.


How are you feeling today.  anda:


----------



## Lynda Lynda

ronroush7 said:


> Hope you are better soon,  Lynda


How is everything going for you ?   :sun:


----------



## ronroush7

A bit of acid reflux today.


----------



## cmack

Lynda Lynda said:


> How are you feeling today.  anda:


I'm pretty good, thanks for asking. I'm just busier than usual with appointments and yard work. Nothing to complain about, I like being busy.


----------



## Lynda Lynda

I was just diagnosed with Crohns Disease.


----------



## ronroush7

Lynda Lynda said:


> I was just diagnosed with Crohns Disease.


I am sorry,  Lynda.   I hope you can get into remission soon.  You have much support here.


----------



## cmack

I feel the same way, Lynda. You can always come here for support.


----------



## Lynda Lynda

ronroush7 said:


> I am sorry,  Lynda.   I hope you can get into remission soon.  You have much support here.


Thank You.


----------



## Lynda Lynda

cmack said:


> I feel the same way, Lynda. You can always come here for support.


Thank you.


----------



## ronroush7

Does anyone have a medicine for when they are not feeling well.   Gaviscon doesn't do anything for me.  My Crohn's disease medicines are Lialda, entyvio and imuran.


----------



## ronroush7

I also take colestid.  Sorry for the whining.


----------



## Lynda Lynda

ronroush7 said:


> Does anyone have a medicine for when they are not feeling well.   Gaviscon doesn't do anything for me.  My Crohn's disease medicines are Lialda, entyvio and imuran.


For acid reflux I take Pantoprazole ( Protonics) a prescription pill one pill every morning. I have been taking Pantoprazole for years and it helps control my GERD very well. Recently I have had a bit more heartburn and acid reflux, so I also take Extra Strengrh Gaviscon chewable tablets during the day. This combination seems to work for me. But I also make sure I eat small meals instead of big meals, I no longer drink coffee, orange juice is a no-no ( as well as pasta sauce) and I never lay down or recline after eating.


----------



## ronroush7

Thanks


----------



## Lynda Lynda

I saw my GI on April 24. The scale showed I only lost 3 pounds since my last visit. During my appointment he said "you aren't wasting away or anything." I was not offended by that. I weigh 181 pounds, so if any of my new medications make me nauseated / vomiting and I lost weight then I wouldn't ever be underweight since I already should weigh way less than 181 pounds for my short stature of 5'1". 

Solid food has not been agreeing with my gut for a while now, so have been drinking 6 Ensure drinks a day at 220 calories each ! ( I will mention the Ensure Drinks to him on March 11th when I see him again. ) This is surely the reason for me not losing a massive amount of weight due to my symptoms the past 3 months ( or longer.)

I just ate a half of a plain bagel with plain cream cheese on it, so I will see what my gut says about that ! I am not going to buy solid food anymore because I try it out, it doesn't agree with me and I throw that food away ( wasting money. ) 

I will buy liquid foods and soft foods only. Back to making my smoothies too, which I love to drink once a day ( my sister bought me a new Nutribullet "extractor." ) I use my smoothie as a meal replacement, it has a combination of ingredients in it. 

Tired today and talking too much. 

Yuck, now checking my poop every day because my GI asks me questions about my poop at every appointment with him. 

Take Care. Hope you are feeling good.


----------



## ronroush7

Lynda, try drinking Ensure Complete.   All other varieties of Ensure have carageenan which is supposed to be bad for anyone.


----------



## Lynda Lynda

ronroush7 said:


> Lynda, try drinking Ensure Complete.   All other varieties of Ensure have carageenan which is supposed to be bad for anyone.


Thanks 
I will start reading all the labels. 
But Ensure Complete has more calories than regular Ensure and it is even more expensive.
I sure get out of the grocery store quickly if I am almost buying nothing but Ensure and soft foods. 
I need to buy plain Greek yogurt again. 

Hope you are feeling well today.


----------



## ronroush7

Thanks,  Lynda.   Hope you are feeling well.


----------



## thike1966

Lynda Lynda said:


> I saw my GI on April 24. The scale showed I only lost 3 pounds since my last visit. During my appointment he said "you aren't wasting away or anything." I was not offended by that. I weigh 181 pounds, so if any of my new medications make me nauseated / vomiting and I lost weight then I wouldn't ever be underweight since I already should weigh way less than 181 pounds for my short stature of 5'1".
> 
> Solid food has not been agreeing with my gut for a while now, so have been drinking 6 Ensure drinks a day at 220 calories each ! ( I will mention the Ensure Drinks to him on March 11th when I see him again. ) This is surely the reason for me not losing a massive amount of weight due to my symptoms the past 3 months ( or longer.)
> 
> I just ate a half of a plain bagel with plain cream cheese on it, so I will see what my gut says about that ! I am not going to buy solid food anymore because I try it out, it doesn't agree with me and I throw that food away ( wasting money. )
> 
> I will buy liquid foods and soft foods only. Back to making my smoothies too, which I love to drink once a day ( my sister bought me a new Nutribullet "extractor." ) I use my smoothie as a meal replacement, it has a combination of ingredients in it.
> 
> Tired today and talking too much.
> 
> Yuck, now checking my poop every day because my GI asks me questions about my poop at every appointment with him.
> 
> Take Care. Hope you are feeling good.


My nutritionist had me put soup in a blender to make it easier to digest and worked when I was in the deeper part of my flare than I'm in now.

I wish you all the best.


----------



## cmack

That is a good idea.


----------



## Lynda Lynda

Well, it is 12:39am and I am still awake.


----------



## ronroush7

Bsd.


----------



## Lynda Lynda

ronroush7 said:


> Bsd.


What's going on ?


----------



## ronroush7

I am better now but last night and this morning i was spending a lot of time in the bathroom.


----------



## Lynda Lynda

ronroush7 said:


> I am better now but last night and this morning i was spending a lot of time in the bathroom.


I have had diarrhea for years. Using Cottonelle Wipes ( they are like wet baby wipes, but they are for adults ) really feels better than plain toilet tissue. And those Preparation H Medicated Wipes are even better if I am in the bathroom a lot, because these wipes contain witch hazel, which is very cooling to that area of the body. 

Glad you are feeling better.


----------



## ronroush7




----------



## Lynda Lynda

The Humira Nurse Ambassador lady was just here at my apartment to talk to me about Humira and the forms for me to fill out and faxing and what I need to do and what my doctor needs to fill out. 

I had to take an anxiety pill while she was here . 

It is a "patient assistance foundation" that will pay for my Humira. It's an easy process that still makes me nervous, I have a hard time focusing, concentrating and remembering things ( sigh. )  The nurse lady was nice. 

Anyhow my last blood test and x-ray ( to check for TB and hepatitis? ) just got received at my doctors office. After my doctor reads those results he will decide what dose I should be getting and he will contact my Health Insurance Company for the Humira Pre-Authorization process. So, my Humira has not been approved by my health insurance company yet. 

Once everything is approved  and all my paperwork and my doctors paperwork is sent to the patient assistance foundation then the nurse will come back to my apt. She will show me about the injections and probably will do the first 4 shots then. ( ? ) The Humira medicine would be sent to me via mail order from a speciality pharmacy ? 

Now I have a headache . 

My Gastroenterologists office is as good one. I like my doctor and his medical assistants. If a doctor is gonna put a scope up my butt then I want him to be a good doctor that I can trust . 

Well, I have booklets to read and information to collect now. This nurse lady will be monitoring me the first 5 months (   ?  )

God I'm tired.


----------



## ronroush7

Feeling like the Crohn's disease is kicking my butt today.  Forgive me for whining.


----------



## Lynda Lynda

ronroush7 said:


> Feeling like the Crohn's disease is kicking my butt today.  Forgive me for whining.


 You're just gonna have to kick back


----------



## thike1966

Lynda Lynda said:


> The Humira Nurse Ambassador lady was just here at my apartment to talk to me about Humira and the forms for me to fill out and faxing and what I need to do and what my doctor needs to fill out.
> 
> I had to take an anxiety pill while she was here .
> 
> It is a "patient assistance foundation" that will pay for my Humira. It's an easy process that still makes me nervous, I have a hard time focusing, concentrating and remembering things ( sigh. )  The nurse lady was nice.
> 
> Anyhow my last blood test and x-ray ( to check for TB and hepatitis? ) just got received at my doctors office. After my doctor reads those results he will decide what dose I should be getting and he will contact my Health Insurance Company for the Humira Pre-Authorization process. So, my Humira has not been approved by my health insurance company yet.
> 
> Once everything is approved  and all my paperwork and my doctors paperwork is sent to the patient assistance foundation then the nurse will come back to my apt. She will show me about the injections and probably will do the first 4 shots then. ( ? ) The Humira medicine would be sent to me via mail order from a speciality pharmacy ?
> 
> Now I have a headache .
> 
> My Gastroenterologists office is as good one. I like my doctor and his medical assistants. If a doctor is gonna put a scope up my butt then I want him to be a good doctor that I can trust .
> 
> Well, I have booklets to read and information to collect now. This nurse lady will be monitoring me the first 5 months (   ?  )
> 
> God I'm tired.


Lynda,
I hope you feel better. We are in the same boat. I called my GI office today, learning over the weekend on line that my insurance no longer requires prior authorization as of 1/20/18. They got the authorization today anyway and are ordering the Humira. Once I receive it I chose to go into the office for my first injections and not the home visit. This is because I have a form the doctor needs to fill out to get my biome (good and bad bacteria balance) tested by ubiome.com. They will not only give me the results but will add them to a national database that will be used for research.

I know 5 people from my support group that rave about how much Humira has helped them. One couple says when they travel, they sometimes have to bring a small cooler and doctor's note to get on the plane. They try to work around the every two week doses but wedding and funerals can happen anytime.

I was at my uncle's funeral today and found that I can now for the first time in 7 months control my bathroom visits. The need came during that homily and 20 minutes later during my cousins eulogy I had a hard time listening, planing my escape route to the bathroom. Luckily the pressure didn't get too much. I have a large hemorrhoid just inside my exit that blocks the flow, before I stretch out (painful when fully solid). I named it Herman and the big one on the outside is Frank and his seven sons, little hemorrhoids. I have to be in remission for 3 months before they can be operated on. Thanks to a great nitroglycerin and steroid cream, they are painless. Herman has been a friend because when I didn't have good control, he gave me a warning and gives me just enough time to get into the bathroom. I haven't had an accident yet, cross my fingers.

I am exhausted too, staying up to 3:00 AM two nights in a row waiting for my awful painful cramping gut to release and vacate what gets blocked only at that time of the night for some unknown reason. Just 5 hours of sleep because we had leave early for the mourning events the last two days. 

I look forward to getting some sleep and even more so sharing our likely success with Humira.


----------



## cmack

I feel for all of you folks. I also hope the humira does wonders for you, Lynda and Michael.


----------



## Lynda Lynda

When the Humira Nurse lady was talking to me today and showing me booklets, I already knew about almost everything she was telling me about, that's because of this forum and a few videos I have watched on YouTube.


----------



## cmack

Lynda Lynda said:


> When the Humira Nurse lady was talking to me today and showing me booklets, I already knew about almost everything she was telling me about, that's because of this forum and a few videos I have watched on YouTube.


It's good to be a well informed patient!


----------



## Lynda Lynda

Ok. So what happened this afternoon/ evening ??
[ Thursday ]

I had some yellow watery diarrhea and I did not eat anything different today than I did yesterday. Also, here I was ready to go to bed/sleep and I am having acid reflux. And a stomach ache. 

And around 7:30pm I had to rest because I was so tired. I put on headphones and listened to relaxing music and fell asleep. I was extremely tired this afternoon. 

Now I really DO believe that stress makes my symptoms worse !  I am trying to get all my Humira paperwork together to send to that foundation and I am hitting a roadblock with my computer. 

And I am super stressed about all these screaming kids playing outside my front door every afternoon and evening....it is SO loud. There are rules here at my apartment complex and I wish people would follow them. 

I can't listen to those screaming kids all summer, I already take clonazepam every day for anxiety. 

1:08am Friday right now and I have acid reflux and the left  side of my colon is doin' something ( ? )

Lynda


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## ronroush7

I am sorry, Lynda, for all the trouble you are having.   As far as eating goes, I have a nutritionist who says there will be days when you can eat all the right things and still have trouble with your stomach.


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## cmack

Good luck with everything, Lynda. I really hope today goes better for you. Peace and quiet is hard to go without, especially when a person feels ill already.


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## lubnaexperts

hi my son having light cramps 2 or r 3 not painful its like pressure for short time after 2 hours of eating and then immediately burps , he did colonoscopy on march which showing very active inflammation , the doctor increases imuran dose  and add cortament mmx , before 2 weeks he has many cramps and slight fever and runny nose and some dizziness , he took zithromax anti biotic to 3 days and all symptoms disappeared except what I mentioned above any idea 
he is also taking modulen 3 shakes daily


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## Lynda Lynda

...


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## lubnaexperts

thank you for your answer lynda , but my son is 20 years old and diagnosed since 4 years


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## cmack

lubnaexperts said:


> hi my son having light cramps 2 or r 3 not painful its like pressure for short time after 2 hours of eating and then immediately burps , he did colonoscopy on march which showing very active inflammation , the doctor increases imuran dose  and add cortament mmx , before 2 weeks he has many cramps and slight fever and runny nose and some dizziness , he took zithromax anti biotic to 3 days and all symptoms disappeared except what I mentioned above any idea
> he is also taking modulen 3 shakes daily



I would contact the doctors office and tell the receptionist to give the doctor a message. Be sure to include all the symptoms, something is going on that needs attention. Just my thoughts. Good luck, and let us know how things go.


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## Lynda Lynda

lubnaexperts said:


> thank you for your answer lynda , but my son is 20 years old and diagnosed since 4 years


Sorry.


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## Lynda Lynda

I'm depressed about money.


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## cmack

Try not to get too worked up, maybe there is a solution you haven't thought of yet. Stress certainly is a bad thing, I pray you are able to afford the things you need, Lynda. Don't be ashamed to go to the food bank once in a while if you need to, I would. I have donated lots of things to charity when I was working, so I don't see the shame in it. I hope you feel better soon.


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## Lynda Lynda

cmack said:


> Try not to get too worked up, maybe there is a solution you haven't thought of yet. Stress certainly is a bad thing, I pray you are able to afford the things you need, Lynda. Don't be ashamed to go to the food bank once in a while if you need to, I would. I have donated lots of things to charity when I was working, so I don't see the shame in it. I hope you feel better soon.


I am really amazed that I am still alive. A lot of things that have happened with me during the past 12 years could have gone even worse than they did. I truly believe there are angels watching over me. I know they are there.


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## ronroush7

Lynda Lynda said:


> I am really amazed that I am still alive. A lot of things that have happened with me during the past 12 years could have gone even worse than they did. I truly believe there are angels watching over me. I know they are there.


I believe something similar, Lynda.


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## cmack

I'm very grateful to still be alive and standing upright.


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## Lynda Lynda

Thank you Ron and Chris for your support.


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## Lynda Lynda

cmack said:


> I'm very grateful to still be alive and standing upright.


I am alive. 
But can't stand upright .
For real, I walk hunched over to the left side and have limited mobility in my neck. And I shrink in height every year .


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## ronroush7

I am sorry


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## Lynda Lynda

ronroush7 said:


> I am sorry



People older than me open doors for me 

Have a good weekend Ron


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## cmack

Take good care, Lynda. Sorry to hear about the mobility issues, I'm prone to muscle spasms so sometimes I'm a little bit crooked too. Thankfully it isn't often. Hugs.


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## Lynda Lynda

Unrelated to IBD. 
Why does it sound like my upstairs neighbor is a sumo wrestler or bowling inside his apartment. Or possibly tipping over furniture. Or ....
I need sleep. This stresses me out. 
The previous resident upstairs was an older gentleman named Joseph, he was SO quiet and lived above me for 7 years !
Living in apartment complexes is a challenge. 
Yeah, one time my sister recommended earplugs. 
How ' bout the neighbor just goes to sleep or reads a book or plays solitaire....something quiet. 
( sigh )
12:31am
Good Night.


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## ronroush7

Gurgling but nothing else.


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## cmack

I had the gurgles last night too, fine today though. I hope the day gets better for you.


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## Lynda Lynda

I had  watery diarrhea 5 times today so far and I only drink liquids every day. Gurgling and spasms in my lower bowel area. 

I am getting concerned today because the area where my anal fistulectomy scar is is irritated. It might be irritated from the diarrhea and wiping all day long. I dont want another fistula or abscess. 

I just started the 6mp pill yesterday. So now I take the 6mp pills daily, after 2 weeks I have a blood draw, a week after that I see my GI. Lots of monitoring. 

I use Cottonelle Wipes every day, but tomorrow I am going to buy Preparation H Wipes because they have witch hazel in them and it gives a cooling affect to the area you wipe. 

Take Care.


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## cmack

I feel for you, that's no fun. I hope the witch hazel helps. I often get concerned about even the smallest problem with my gut, it's pretty hard not to be upset or scared. Usually things are somewhat manageable though.... the stuff we deal with hey???


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## Lynda Lynda

Chris :
Have a good week. 
Hope your grass starts sprouting.


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## Lynda Lynda

It is me again.
Do you think God punishes people ?
Because......my kitchen and bathroom and closet were flooded on Wednesday. I have been breathing in second-hand epoxy fumes for the past 24 hours ( when a person moves out the kitchen counter tops get painted and then epoxy on top of the paint ) and this afternoon I get home to find out the chiller unit ( air conditioning ) isn't working in my Building #4 ( all our "air conditioning" comes from a  chiller unit for the whole building.) 

Ok, so I am going to see my mechanic  tomorrow because my left rear turn signal doesn't work, I know I will have been cursed if he says that I also need $1,000 worth of work on my engine too. I see my GI tomorrow too !

I am not mentioning all this in a depressing way. I am at home now and actually just sitting here thinking when the next thing will happen. Yikes. 

Something good always happens after something bad  happens ( for me ). So I will try to look at things that way this week. After all, after my flood I got my carpet cleaned and that nice cleaning lady cleaned up my kitchen and bathroom area. She actually cleaned a large mirror that I cannot clean myself because it is high up. 

Well, I am gonna use my shower now, the one with the new fixture that turns the water off and on. After the flood now I am afraid to touch that thing. 

Take Care.


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## cmack

I don't think God punishes people. I hope you just need a new turn signal bulb.


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## Lynda Lynda

In my thirst for IBD knowledge I have read the first 6 pages of the "Diagnosed over 50" thread. There are 16 pages !!  I know the posts are older and treatments may have changed, but I am reading about all the same medications they use now and those posts are 4 years old. Has anything changed 
How am I feeling ?  My eyes hurt from reading posts on my phone. 
Take Care


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## cmack

The only thing that stays the same is everything keeps changing! There is always new research being done, and things do keep moving along...sometimes very slowly. Be kind to your eyes.


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## Lynda Lynda

....


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## Lynda Lynda

I'm getting bored. 
I think I will take a break.


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## Lynda Lynda

Its 1am and I have heartburn and reflux.
Sleep would sure be nice.


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## cmack

I hope you get a good sleep tonight.


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## Lynda Lynda

Ok, I had a good morning today, but that went to crap this afternoon. I have had diarrhea for 21 years except for 8 months in 2014 and a few months in 2016. I ate something yesterday that plugged me up
 ( something I never normally eat. ) This afternoon I sat on the toilet for an hour pushing to have a bowel movement, I felt like I was going to give birth. I also had to assist my poop to help it come out ( gross.) And I vomited. All of a sudden I wished I had diarrhea again 
Ugh, the left side of my colon is sore now. And I am still nauseated. And my hemmorhoids are very unhappy. This is "TMI" I know. 

THEN I had to drive to the grocery store, feeling like shit, in °111 temperature. I needed bottled water and of course "butt" supplies ( Preparation H Wipes. Preparation H Cream and Preparation H Ointment. ) I hate having to do everything myself, I haven't any family members here in town to help me and no friends. The last time my brother-in-law and sister were in town my brother-in-law was whining about carrying bottled water from their car into my apartment. I won't ask him for a favor again. Although he is in his late 60's he is in good health and he exercises. My tiny 5 foot lady neighbor was trying to help carry that same water for me and I am just acquaintances with her. God Bless her. I used to use Safeway Grocery home delivery for a long time, but their service and the quality of other parts of their services diminished, so I cut all ties to them. Now I have to get off my lazy butt and go out to buy my own groceries, which is what I should have been doing all along. I have one of those "old lady" shopping carts to help transport my groceries from my vehicle into my apartment, that is a lifesaver,

Well, I am going to drink a lot of water now, rest in the air conditioned comfort of my apartment and shut my eyes. I am going to only take one Cholestyramine Packet today instead of two so that I do not get constipated tomorrow, I couldn't survive that constipation two days in a row. I am not going outside tomorrow, I might get heat-stroke. 

I have been taking the 6mp pill for two months and the Humira Pen Injections for one month. I started drinking Ensure Drinks four months ago because I could not tolerate solid foods at all. I also drink  "Carnation Essentials"  [ powder packets I mix with milk, like a meal replacement. ] Recently I have been trying to eat some soild food and a few of those solid foods have agreed with me. This not the healthiest, but I can tolerate simple sandwiches on white bread.....bologna or cheese or grape jelly. I am so happy to taste, chew and swallow some solid food. 

Well, I got everything off my shoulders now, so to speak, so I will go now.

Take Care.


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## thike1966

Lynda,
You are truly an amazing person. You've inspired me many times with your thoughtful insight. 

It's funny, here In Colorado, people are complaining about 90's.

Your strength to take care of yourself when others aren't around is the saving grace that we all need.


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## Lynda Lynda

Thank U


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## cmack

I'm so sorry, Lynda. You shouldn't have to do everything yourself in all that heat. Unfortunately, us disabled folks still get the same weight as a healthy person... I wish there was more help for those of us who struggle. Our governments, collectively, diminish the very systems designed to keep us well. I certainly hope things improve for you. I'm glad you are back in your own air conditioned space. Big hugs.


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## Lynda Lynda

I have a disabled license plate on my vehicle. A doctor has to sign a form for the Motor Vehicle Department. I have had that license plate for 10 years ? I have been using an "old lady" shopping cart for longer than the license plate. Over 20 years ago I lived in a third floor apartment and I lived there 5 years. I had started having problems going up and down those stairs carrying laundry and groceries. Then I moved into a ground floor apartment. After that, then I started having problems lifting heavy things like containers of cat litter and bottled water. I started using a grocery delivery service then too. And bought the "old lady" shopping cart. It has been a slow progression. I was a healthy ovo-lacto vegetarian who exercised back in the early 1990's. Then the Ulcerative colitis reared its ugly head and I was never the same. I also have bilateral rotator cuff syndrome, arthritis in my hips and degenerative disc disease in my neck. And then this Major Depression. No wonder I have been tired for years. I have not worked a job since 2009 and even before that my job performance at work was going downhill fast. I can't imagine working a job anymore, I am physically and mentally exhausted. [ sigh ] My body AND my mind are "broken." 
I am sure ranting today. 
Have a relaxing weekend. 
Lynda


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## cmack

You are very young at heart, Lynda. I appreciate your friendship. Hugs.


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## Lynda Lynda

...


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## cmack

I'm sorry to hear about the blood, Lynda. I don't blame you for feeling that way about pred.You know your body best, but be sure to get it some help if it persists. The VSL should help make your BM's regular. I hope you have a better day today.


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## jnette

Feeling awful. Thought I had this behind me. Four years ago. Guess I just got lucky back then. I had only been diagnosed a few weeks and after Azulfedine BID, it all went away. For nearly four years. But hello! It's back.  :angry-banghead: 
Lots of gurgling, growling, explosions, and pain... this time deep pressure and unrelenting dull ache in my lower back just above the tail bone (rectum, most likely) and radiating clear down both my legs all the way to my feet. Never had that before. But otherwise, same symptoms exactly as when I first was diagnosed. Oh well. Have a colonoscopy scheduled for next month anyway, so I guess we'll see if this is an unexpected flare or just what. Looks like I'll be hanging around for awhile. :yfrown:


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## Lynda Lynda

Hi jnette,  I think your scope results will probably make you less panicked because then you will know what is really going on. I'm sorry that your symptoms came back. 
Lots of great folks here with kind words.
Share your story in the My Story section. 
Or say Hi on other threads too. Some threads are more active than others. 
We all support you


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## jnette

I know you do, and thank you. :thumright: Great site for those who need it.


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