Hi,

just want to continue this thread since the biggest problem with my j-pouch is bleeding. Just to summarize shortly (and apologies if I have some grammar mistakes, typos, etc. since I am not a native English); I had my surgery already 2003 (directly to j-pouch) and after 2 month recovery I went back to work. I didn't noticed any significant problems with j-pouch after that, but after one year, i was hospitalized for another reason, and they found out that my hb was only 80. So after that they discovered that there is a very small part of the j-pouch which seems ulserative and had caused a small bleeding which then had lowered my hb to 80 and i normally have pretty high hb like 160-170.

After that, I have needed to monitor my blood and have needed to take some supplementary iron in order to keep the hb in good levels.

However, I had never had any massive bleeding, just some traces of blood sometimes in my stool, until i had a scopia on year 2013 and the doctor was trying to solve the problem by using the electronic equipment to burn the area, however, after fee hours it caused a massive bleeding and i needed to take to hospital for a two weeks, i was given a blood since my hb went to 80, and totally i was off from work around 3 weeks.

After that, the situation has been pretty same, no big problems, small bleeding but treatable with supplementary iron.

Until this summer, I had back problems and i took some ibuprofen and most likely because of that, i had again a massive bleeding which brought down the hb to around 100 within just few days, and the starting level was at around 160.

Now, this morning, i once again had some clear blood in my stool. So I am starting to be very worried since i don't see any reason why it should start the larger bleeding again, since i don't use any ibuprofen at all. I am starting to be very worried about my situation.

Does anyone have had similar problems and could advice me what could be done?

Thanks

wesley 

Had the exact same thing maybe 4-5 times since my pouch creation 12 years ago. I've them last for several days which required IV's for loss of blood volume.

Thanks for your reply. 

Have the doctors found the reason why this has happened to you?

Not me.

Any ulcer in the pouch (or the rectal cuff) can erode into a small blood vessel and cause plenty of bleeding. It usually stops on its own, but sometimes needs medical attention to stop the bleeding. It's best to think of this as two separate problems: First is the bleeding, which might need to be stopped, replenished, treated with iron, etc. Scond is the ulcer(s), which might be from pouchitis or cuffitis, either of which should be treated. A simple pouchoscopy gives a pretty clear picture.

Ulcers aren't the only thing that causes rectal bleeding, of course. Hemorrhoids are a very common cause, too.

Scott, et al. -  does occasional bleeding (for example, not into the toilet, but into the panties) require "treatment"?  I'm curious as to whether those of us with ulcers "must" get treatment for them, or whether we can go along until/unless some more serious symptoms develop.

If it never makes it into the toilet it's most likely to be from irritated skin or minor hemorrhoids. If I have ulcers then I'm going to try to get them cleared up, if possible. I'm less worried about minor inflammation, but ulcers aren't minor, IMO.  

Update from my situation. I had a scope this morning and the doctor said that there are ulcers that obviously have caused the bleeding. But he also said that he does not see it as pouchitis (at least I understood this way, we have a little bit translation problems with the doctor). He prescribed me 10 day Ciproxin and Mesalazine. This is the first time after my surgery (2003) that i have been prescribed Mesalazine. So is my colitis ulcerosa having a revenge..??

Any advice etc anyone to my situation? 

One questions more: how about disability? I know that it variates between countries, I am from europe but if anyone had experience how difficult is to be able to go to disability with j-pouch. I'm starting to be very depressed since i try to work, but my j-pouch does not like it. And it's very difficult to perform on work if you need to worry about your health, and be on sick leave quite often, like i am for the rest of the week.

The doc prescribed Cipro, which suggests that he considers pouchitis a possibility. The mesalamine (mesalazine) suggests that he also considers cuffitis a possibility. Cuffitis is like ulcerative colitis in the small rectal cuff that the J-pouch is attached to. Cuffitis is much more likely to bleed than pouchitis. Maybe you could get a copy of the doctor's record to facilitate translation?

A J-pouch is not a disability. Some people with J-pouches that don't function well may be disabled, and some folks here have successfully applied for benefits.