How are you feeling today?

[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.

 

[Ann Morgan]

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]

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]

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. ????

 

[Ann Morgan]

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]

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.

 

[UnXmas]

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.

 

[UnXmas]

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.

 

[duh panda]

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.

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.

 

[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.

 

[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.

 

[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.

 

[Ann Morgan]

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.

 

[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.

 

[ronroush7]

Mostly bloated.

2

 

[ronroush7]

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

 

[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.

 

[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.

 

[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

 

[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.

 

[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?!

 

[Ann Morgan]

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.

 

[UnXmas]

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!

 

[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.

 

[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.

 

[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

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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.

 

[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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.