Skip to main content

Hello, I am new to the group and hoping to get some feedback on a problem I have had for about a year. I am eight years out from j pouch surgery. Every time I eat onions (I know it sounds crazy) and sometimes too much citrus I have a flare. What I mean by a flare is I bleed rather large amounts, about a pint or so per bm, always watery. When this began I went to my surgeon and he said it was most likely pouchitis and gave me antibiotics. Which does stop the bleeding in about 2 or 3 days. However, by this point I am always extremely anemic. We also did a few tests and ruled out Crohn's. From what I have read, and can gather, most people do not bleed this much, or at all, during pouchitis. Also, I do not feel feverish or particularly sick other than becoming very weak from blood lose.

I guess what I am curious about is whether or not anyone has had a similar experience. Do most of you think it is just a form of pouchitis? Could it be cuffitis? However, I do not see how the little bit of cuff I have left could produce the amount of blood I am talking about. The blood is normally somewhat dark which I know may suggest something higher up, but once again I am not sure of the source. I am thinking about inducing a flare and having a pouch-oscopy. But, that seems a little extreme. Any advice would be greatly appreciated as my quality of life has begun to be effected in a very negative way. I apologize for the length of this post and wish all those working through these types of trials all the best.
Original Post

Replies sorted oldest to newest

This does not sound normal at all. I'm not sure how onions or citrus would cause this but it sounds like you really need your pouch scoped during one of your episodes to find the source of the bleed. Trust me, I've been dealing with this for years. My bleeds are in my small intestine somewhere, not in my pouch. I was in the ICU from it last week and needed 5 units of blood. I wouldn't just accept this as normal, insist on a scope to find the source to get it resolved.
I have cuffitis and have bled nice bright red blood output that filled the entire bowl, but never have had it over and over again. After a big bowl full I have smaller amounts that come out with my BM's so I don't think you have cuffitis.

I'd suggest you get an appointment with a good GI. Hopefully she/he will scope not only your pouch but up into your small intestines. My last flex scope he went up through 2 feet of my small intestines. Since you don't know the source of your bleeding I'd suggest that.

The amount of blood you are loosing is in no way normal. While my surgeon is great as a surgeon he isn't too good with problems after the surgeries. Maybe your's is better than mine.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×