Crohn's Disease stomach problems

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Sep 17, 2012
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Hey everyone. I've been diagnosed with Crohn's for about half a year now. I started remicade around the same time. I also take pentasa and omeprazole, the omeprazole is for ulcers that I have. I am also lactose intolerant. When I started remicade it took a few times until it really started working, but by around the third time I was amazingly better. I could eat whatever I wanted with no problems. I could even eat ice cream and chocolate which I hadn't been able to eat for years. All I had to do was take lactaid and I was okay. For my last 3 remicades my stomach just hasn't felt the same. I noticed something was wrong when I started eating ice cream again assuming it would be fine and about a week later I started getting diarrhea and stomach pains. This did not go away until my next remicade. Same thing happened with the next remicade I ate what I wanted assuming I would be okay and a few weeks before my coming remicade I got sick again. After I got sick that time, I decided to change my diet I cut out a lot of lactose and only ate dairy free ice cream. I thought maybe I was getting sick because my lactaid was not working, so I started trying something called digestive advantage lactose defense. It has been working better. I just got my remicade a week ago though, and my stomach still doesn't feel as good as it used to. Having this disease has been very hard on me. I'm eighteen and for the past 3 years it has taken over my life. It's hard because it seems like no one truly understands what i'm going through. In the beginning everyone was very sympathetic, but now it's different. I get sad sometimes about having Crohn's and It's like at that moment the person I'm talking to will try to make me feel better, but after a few minutes whether I feel better or not they just stop and seem to forget completely. I want to move on with my life get a job, feel comfortable in school, but it's hard when I never know what my stomach is going to do. I haven't been able to go to school for a few years because my diarrhea from Crohn's got so bad. After, I started getting treatment I was so grateful it seemed like the remicade had healed my body. I could finally be myself again, be happy, go out, and not feel sick! Lately, I'm worried though because my stomach has not felt as good as it used to after my treatments of remicade. I talked to the doctor and he said he was going to up the dosage of my remicade next time, so we'll see if that helps. I just started going to college this year and it has been stressful. I'm always worried that I'm going to get sick at school and have to rush to the bathroom. I'm wondering if maybe the remicade just isn't working the same anymore? I'm not sure if I may need to switch medicines? or if the problem is that I just over did it with eating what I wanted for so long that now my stomach just doesn't want to tolerate much at all? I'm not sure what's going on, but any advice would be greatly appreciated. Thank you.
 
Remicade can start to lose effectiveness after a while as your body builds up a resistance to the drug. If you are getting symptoms in the weeks leading up to your next infusion, this might be the cause. The same thing happened to me after taking the drug for six months or so. Eventually, I was down to only 4 weeks of symptom-free bliss followed by two weeks of discomfort and then two weeks of hell. I ended up re-doing the induction routine (infusions at 0, 2, 6 weeks) to get back into remission and added azathioprine (Imuran) to the mix to prevent my body from fighting the drug. This combo has worked for three years (and counting). Unfortunately it also doubles your risk of lymphoma (but it is still a relatively small risk).
Other options include increasing the dose of Remicade, getting the infusions more frequently, or switching to a different drug. It's something you'll have to discuss with your doctor (and your insurance company--sigh).
 

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