• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

How are you feeling today?

afidz

Super Moderator
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??
 

afidz

Super Moderator
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
 

dave13

Forum Monitor
Location
Maine
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.
 
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
 
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.
 
Last edited:
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:
 
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!
 
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.
 
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.
 

afidz

Super Moderator
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.
 

Jennifer

Adminstrator
Staff member
Location
SLO
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.
 

afidz

Super Moderator
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 :(
 

Jennifer

Adminstrator
Staff member
Location
SLO
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.
 
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.
 

valleysangel92

Moderator
Staff member
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.
 
Last edited:

valleysangel92

Moderator
Staff member
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.
 
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
 
Location
Texas
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!!! :(
 

dave13

Forum Monitor
Location
Maine
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.:)
 
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"! :)
 
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.
 

afidz

Super Moderator
: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!
 

dave13

Forum Monitor
Location
Maine
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.
 
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.....:(
 
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.
 
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
 
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.
 
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
 

emmaaaargh

Moderator
Staff member
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:
 

afidz

Super Moderator
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.
 

afidz

Super Moderator
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:
 
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.
 
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....
 

afidz

Super Moderator
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.
 
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.
 
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?
 
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.
 
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!
 
My crohns symptoms have improved, just the knees. Might have to try methotrexate aswell. Have u ever taken it!
 
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.
 
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?
 
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?
 
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.
 
Swimming is supposed to be good. Not sure about anything else - but if you ask somebody here will have the answers.
 
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.
 

valleysangel92

Moderator
Staff member
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.
 

dave13

Forum Monitor
Location
Maine
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.:)
 
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.
 
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
 
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.
 

afidz

Super Moderator
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.
 
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 ?
 
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!
 
Location
Texas
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

Moderator
Staff member
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.
 
Location
Texas
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!! :)
 

dave13

Forum Monitor
Location
Maine
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 :)
 
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. :(
 
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.
 
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!
 

dave13

Forum Monitor
Location
Maine
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!!
 
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?
 

afidz

Super Moderator
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
 
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.
 
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 !
 
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 !
 
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.
 
Location
Ohio
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
 
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.
 
Location
Ohio
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.
 
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.
 
Location
Ohio
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.
 
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.
 

valleysangel92

Moderator
Staff member
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.
 
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.
 
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 .
 
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.
 
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.
 

afidz

Super Moderator
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.
 
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.
 

valleysangel92

Moderator
Staff member
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.
 
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?
 

valleysangel92

Moderator
Staff member
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.
 
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.
 
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.
 
Location
Ohio
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.
 
Top