Recently Diagnosed with Crohn's

Hi all! Basically, I've just been diagnosed with mild crohn's and have been prescribed 9mg of Entocort for three times a day. The doctor said that I'd do this for about 6 weeks. I'm new to the whole thing and as the only symptom I experience is blood in stool, I'm a bit wary on taking medication: is it harmful? and is it likely that I'll experience weight gain/ moonface? I'm so self conscious about how I look and this would really damage me mentally. If it helps, I'm 18 and male.

Hi there! Sorry, I didn't include all the details: i was too caught up on the side effect-steroid business! I was also prescribed Imuran and Pentasa, and he said those were drugs for the long term whereas Entocort is just for a small period. Yes, he is a GI and had performed a colonoscopy on me a week prior. After two weeks, I have to go in and do a blood test to see if it's improved so fingers crossed!

Thank you so much for the reply

Seems like your GI has actually done the right thing.

'Mild' Crohn's is relative. Because you're so new to Crohn's it's impossible to know whether you have a genuinely mild case that always stays mild, or early/new disease which will get worse over time. Thus your GI is covering his bases and he's probably right to do so. That said, what you're on is pretty normal for Crohn's. You're not on the strongest meds yet, which are the biologics.

Entocort is a relatively safe steroid. It's topical, which means it works only on the gut lining and doesn't get into the bloodstream - at least in theory. A small amount of it does get into the bloodstream, but it's a lot safer than a systemic steroid like prednisone which basically affects every system in your body. On a 6-week course you shouldn't gain weight, get a moon face, develop steroid dependency and all the other lovely side-effects of more systemic steroids. (Actually even a 6-week course of prednisone shouldn't cause those issues, but some people develop side-effects much more quickly than other people do.)

Good luck! Glad you've got a GI doctor who seems to be on the ball and keeping an eye on things from the start.

My son was dx two years ago (age 19 - close to your age) and was told it was "mild." But as NCOT stated it is hard to know what it really means "underneath." My son did not go on any steroids but was initially prescribed Pentasa / Imuran / probiotics / Vitamin B / ferrous sulfate. His only symptom at the time of dx was bloody diarrhea which he had for almost two years before telling his dad and me. Because he continued to have diarrhea he was started on Remicade - his diarrhea slowed down but he started to have abdominal pain and became very ill with lots of vomiting. All this while a freshman in college. He eventually had to have surgery because somehow with all the medications he developed a stricture. BUT he is now in a deep remission and feeling incredibly well. I don't tell you this to scare you but to affirm what the others have said. Keeping an eye from the start will help you mange this disease - whatever it brings. Best to you!

Don't let your GI keep you on endocort for long periods of time. I was on it for 6 years and developed high blood pressure and varicose veins on my legs. It took me 6 months to get off due to the withdrawl symptoms. They say it works isolated to the small intestine but long term use makes it act like prednisone. I had terrible mood swings when on it.

Matthew Sawrie said...
Don't let your GI keep you on endocort for long periods of time. I was on it for 6 years and developed high blood pressure and varicose veins on my legs. It took me 6 months to get off due to the withdrawl symptoms. They say it works isolated to the small intestine but long term use makes it act like prednisone. I had terrible mood swings when on it.

Yeah, for a few months it's fine. But you definitely don't want to be on Entocort for 6 years.

straydog said...
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