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7 replies

Question for the "lucky" ones who had the pouch bleeding

I IkhMember
I'm currently bleeding and a bit shocked and desperate.
I'm on antibiotics (8th day) and things are improved. Also blood work seems to mark improvements, and I'm taking vsl3 (last 2 doses I tried the enemas) and things seems settling for what concerns the stools, which are not watery anymore.
So I'm also recovering from dehydratation which caused a lot of fatigue.
The problem is I'm still bleeding, not as much as a week ago but enought to make me sad. I don't have other symptoms, no urgency at all and almost no gourgling nor pain. I have about 3 or 4 bowel movements.
Just the bleeding. And I'm feared because I don't want this symptom to become worst as a week ago and turn to be untreatable.
My doctor denied to make a scope and I don't know if they could close some blood vassel or ulcer was formed.
I was advised to take budesonide (entocort) 9mg but, for now, I refused it as I'm thinking I still could go well with antibiotics. I believe that less drug you take the better, and I don't like very much the way steroids act.

How much time should I expect to see this blood?
Who of you had blood and never recovered?
Do you think this coould be misdiagnosed as pouchitis?

I'm confused and need some words from experienced pouchers.
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J jeaneMember
If you have pouch bkeeding it is possible you have ulceration, hence the reason fur entocort. I recently had bleeding and also eosinophils diagnosis in my pouch scopes which means inflammation that could lead to tissue damage or has already started ( bleeding). I immediately started on entocort. Bleeding can also be from cuffitis but you normally have anal pain and urgency with cuffitis, as well as bleeding. I'm not sure about your situation without a scope and biopsies but once I saw blood and the biopsy results I raced to start the entocort. I do not want tissue damage from chronic inflammation in my pouch if I can help it. I have had pretty chronic pouchitis which does not sound like your case.
Jan DollarJan DollarModerator, RN, retired
Personally, I'd take the budesonide (Entocort). I feel that the risks of not taking it are much worse than the risks of taking it. If it does not work, then you can go back to your doctor and have more reason to need a scope for diagnosis. Otherwise, i think you are putting yourself under unnecessary stress. Without a scope, how are you certain it is not cuffitis?

Still, you have the right to refuse treatment. You just have to be willing to accept the consequences.

I had a lot of bleeding with cuffitis for years, and there was no Crohn's suspected.

Jan Smiler
J jeaneMember
I do get pouch cramping at times even on entocort, but my ansl symptoms have inproved since going in it. I do not like being on it anymore than the next guy but I'm willing to do anything to save my pouch. I was afraid of permanent damage and scarring if I did not start this medication with chronic pouchitis for over two years. I never took biologucs with UC but would even be willing to try these to save my pouch and avoid additional surgeries. I wish I did that with UC as I may not have had to undergo this surgery if I started biologic treatment earlier in my disease course.
AllyKatAllyKatMember
I Have had bleeding and I do not have CD or a cuff, it was stripped. Personally, I think u should be scoped and have no idea why your doctor would not preform one. F you look at my signature u will see I've been on every drug. I too was afraid of the endocort but had absolutely no reaction from it? It is not a long term drug so you would still need to find something else if needed? My GI treats. E. Rey aggressively when I have a flare up? When I had bleeding it took about a week to get it under control but I would take multiple drugs and then wean off one at a time? You might want to try steroid enemas! they worked pretty quickly for one episode.

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