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Crohn’s in terminal ileum with bowel obstructions?

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Posted 12/27/2007 1:49 AM (GMT 0)
Hi guys I’m looking to talk to people who have the Crohn’s in the terminal ileum. I fighting this crap and beginning to run out of options. I’m just wondering how you deal with it and what meds you take.

I have NEVER had diarrhea which is weird for this disease I guess. Instead I go 3-4 days without a bowel movement and get all binded up. Prednisone works great but Asacol, Pentasa, Entocort, have all let me down. I guess the next drug is Remicade right?
Posted 12/27/2007 3:43 AM (GMT 0)
YES! Those are my exact symptoms. I was diagnosed because I had an obstruction. I never had diarrhea, so it threw the doctors off.

I've been in remission for just under 4 years now. I took 6mp and Pentasa to get into remission and stay there (only recently went off 6mp for non-cd reasons). On its own, Pentasa won't make severe CD better, that's what the 6mp did. After years of the remission pentasa is good enough for maintenance for me. I can't tell you about remicade. My GI won't let me try it because my strictured areas are too narrow.
Hope something workd for you.
Posted 12/27/2007 4:49 PM (GMT 0)
inflamed, I thought I was a picture of health until one day I ended up in the ER with a complete bowel obstruction. I never experienced pain until that point.

I have alot of RLQ pain now though.

I have narrow strictures also, what is remicade not good for narrow strictures? Have you tried humira before?
Posted 12/27/2007 7:29 PM (GMT 0)
Yes, I had CD in the terminal illeium and no "D".  I too was a 26 yr old picture of health and then one day as I vacuumed the floor I went to my knees.  9 months being misdiagnosed and given a complete hysterectomy,  I finally found a doctor who could diagnose me rather than tell me it was a fantom pain in my head.  I have never had "D".  I was always the other extreme.  I have been on remicade for almost 4 years now and it works great for me. I am not fully in 100% remission, but I will take what I have.  Hope it works well for you.

 

Posted 12/28/2007 9:08 PM (GMT 0)
Entocort does the trick for my daughter...am sorry it didn't work for you.

While checking out other med options, you might want to try a safe natural remedy, like eating yogurt. We make our own, fermented 24 hours. This makes the yogurt far stronger than what you might find in a store and within 24 hours, bacteria have eaten all the lactose in the yogurt. That said, even commercial yogurt might help. Also lots of fruits plus vegies (but vegies cooked very well, and fruits peeled, keeping in mind your stricture)
Posted 12/28/2007 10:57 PM (GMT 0)
Redspot-- any healing causes additional scars. My strictures are so severe, my GI is concerned that the fast healing that occurs on remicade could heal me shut. I think I am an extreme case. I haven't had to try anything like that or humira though. 6mp put me in remission after a few months and that kept me there too. Good luck.
Posted 12/29/2007 11:25 AM (GMT 0)
Well, I don't have it as severe as you but yes, the constipation has started in for me. It used to be D, but now C. I make sure to take fiber pills every day and also, if needed, I do a stool softener. Maybe those would help you??
Posted 12/29/2007 1:22 PM (GMT 0)
Yep, exactly as you described. I was extremely constipated all my life and then came the bowel obstructions. I was in the ER every 2 or 3 months until the IV steroids and pain killers stopped working. At the end I was taking several stool softeners a day and still couldn't "go." Up until then, 2 stool softeners every night kept me regular.

I did have a bowel resection eventually and was concerned that I'd have diarrhea after that, but instead, I am now regular as clockwork every day. I wish I'd had the resection about 40 years ago!! Good luck. It seems like it takes all our time to monitor and deal with CD and all it's issues.
Posted 1/4/2008 8:13 PM (GMT 0)
Hello, you are not alone. I think I remember reading somewhere that when you have Crohn's in the terminal illeium it is normal not to have "d". I think that is why it took so long to diagnose me (finally was dx'd through the er which seems like a common theme) Entocort worked for a while but that stopped helping eventually and prednisone helped alot, but it was to the point where I had so much narrowing of the intestine that I had a surgical resection in April. I have been feeling good ever since. The ironic thing is that I had "D" following the surgery for about 4 months, things are finally back to normal for me.

I hope Remicade provides you with relief.
Posted 1/5/2008 3:01 AM (GMT 0)
I think this is also what I have. My original problems were fevers/URQ pain/liver enlargement. Finally a doctor ordered a colonoscopy and found that the terminal ileum is narrowed. I think it is fairly small. My symptoms have been relatively mild so far, what I hate is I get fevers >102 for several days at a time.

I am wondering, anyone else that has this type of Crohn's, did you get the Serology 7 test?

I did, that is what confirmed the diagnosis. Out of all the scores, the anti-Cbir1 is the highest. Apparently that correlates with stenosing, small bowel crohn's.
Posted 1/5/2008 3:05 AM (GMT 0)
hi.. I always thought I was strange because I never had "D" but now I see I am not alone, I do get severe anemia thats how I found out I had crohns. I've been on pentasa but now they stared me on entocort. But I too can go a few days without going to the bathroom. I try to keep track, I'm not sure how many days of not going is too many when you have crohns. hope you find something that works for you.
Posted 1/5/2008 3:14 AM (GMT 0)
I may be even more odd than y'all. I don't have constipation OR diarrhea. I usually have normal bowel movements like everyone else.

I get more pain than anything. It's horrible. My disease is in the TI and it's extremely narrow (as I found yesterday when I attempted to eat baby carrots AND a banana in the same day!). I have had several acute blockages and have been hospitalized after going months without eating a solid food. I also had fistulas, but none currently that we know of.

I am on Humira now. I was on Remicade, loved it, but grew antibodies to it. Right now, other than having issues digesting past scar tissue, I do fairly well.
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