My story

[Nicole33]

my story

Hi, my name is Nicole and I am currently at Western University in London, ON (I'm from Peterborough, ON originally). I was diagnosed with Crohn's just over a year ago, just before my 24th birthday.
In retrospect, I have had symptoms (told it was probably IBS) for years, but last summer it got really bad, I was in so much pain I wasn't eating, lost 25 lbs., etc... Prednisone worked really well for me, coming out of the hospital I felt amazing, then as I tapered off I began to feel flare ups again. I did one more round of it, then tried Pentasa, which didn't seem to do much. I was just trying to monitor my diet and supplement with lots of vitamins, but ended up really just living off fluids and starting to get a lot of pain again. Recently I saw a new specialist and he put me on entocourt (for now) and an immunosuppressant (azathioprine) long-term... He has been talking to me about Remicade, but it makes me nervous... I'm feeling ok, not a ton of energy and I still have pain a couple of days a week if I eat large meals, but its bearable.
Also I was wondering if anyone has tips on how to quiet my stomach at all?!? If it eat it makes noise digesting, if I don't eat it grumbles because I'm hungry, and it's louder than I usually am in class, its hard not to be embarassed...
I've checked this forum a few times, but now am feeling like it'll help me to really read through and feel support from others who are experiencing the same issues. Any advice is greatly appreciated, take care!

 

[Nica]

Hi Nicole,
Welcome to the forums.
As far as getting your stomach to quiet down the only suggestion I have is instead of eating in the morning try an ensure or instant breakfast. It might help.

I hope you start to feel better and good luck!

 

[crazycanuck]

Well first off welcome to the forums and As for the stomach sun chips work well for me for some unknown reason. The ensure does sound like a good idea to me too

 

[Chuck2008]

Low dose prednisone works for me (6mg/day for the past 2 years) and when a flare-up starts I go on 100% Ensure Plus meal replacement. I'm not able to tolerate 6-MP and other things I've tried, and so I am stuck on prednisone into the foreseeable future. My doctor is going to order a bone density test this month to make sure the long term prednisone isn't causing problems (and I am confident it isn't since I've read that with vit D and calcium suplementation bone density actually increases even if on low dose prednisone). Anyway, you might consider low dose prednisone?

PS: I'm in London, Ontario too and am a graduate of UWO

 

[Nicole33]

Enjoying all the snow here in London Chuck? lol. What is 6-MP? I was on prednisone twice, and felt SO good, especially the first time (probably because the pain was so bad before I was hospitalized) but I could eat practically anything and had SO much energy, which honestly I could really use right now for school! It was when I tapered off that I started to have problems, pentasa didn't do much so now I'm trying Imuran (long-term) and budesonide (just for a few months)... so we'll see how that works. But my doctor seems to be suggesting remicade, which I'm not sure I want to do.
Anyway, I wish I could stay on prednisone, I know it has negative side effects but doesn't everything? I just felt SO good on it I miss it, lol, but maybe a low dose wouldn't be enough I'm not sure... I might mention it to my Doctor anyway, thank you!

 

[Nica]

Hi Nicole,

Pred has really, really bad long term side effects. I have had Crohn's for 12 years, so way back when remicade was a new drug. The doctors didn't put you on anything unless you had SEVERE disease. So I was left on high dosages of Pred for LONG periods of time. Now I can't take it at all without Mania, Massive bloating weight gain, tachycardia and new joint pain. I also have bone loss which effects my teeth, I have broken bones. I am only 37. I cant even handle entocort anymore because of steroid side effects. I understand it makes you feel better, but truly it is a double edged sword. Eventually it stops making you feel good and the side effects are unreal.

Looking back, I wish I would have started a biologic earlier. I reacted to remicade, but humira has been a god send for me. 6mp is like Imuran an immunosuppresant. (or DMARD)