Elsur, large amounts of bleeding needs to be evaluated. Can you get in to see your GI?

Yes, I've already made an appointment.

The thing is, I've had these kind of problems before and the answer I've got from my doctors then were not really satisfying as they suggested a polyp to cause that (it's a lot of blood, a little polyp shouldn't be able to cause that) or didn't see any specific reason at all. I'll try a new doctor today, so we'll see what he's going to say.

But I was hoping for some input by others that may have faced these problems as I haven't got a satisfying answer until now, as I've already mentioned.

"A lot of blood" generally comes from a single small blood vessel. A polyp or an ulcer can certainly do that, but I'd want to know where the thing is. I'm glad you're seeing a new, hopefully better doctor. Have you had a pouchoscopy?

Well, it's not like my other doctors were bad in any way, I've trusted them and liked them but they didn't see anything. Just like that new doctor, he didn't see anything specific, too. It's so strange that for 3-5 stools there is nearly everything full of blood and after that it's fine again. I don't feel any worse, I see that something is not right when I look in the toilet and everything is full of blood.

I really don't know how to feel about this as nobody has ever found anything after these incidents with all this blood except for that one doctor who suggested it might have been a granulation polyp.

Elsur, I have had same problems. Even worse. On june this year i suddenly started bleeding massively, meaning that the stool was basically only blood. I went to hospital where i needed to stay four days. Hb went from 160 to around 100 just within few days! They gave me ciproxin and flagyl (flagyl i needed to stop because of severe nausea, etc) and after 1-2 days on ciproxin the bleeding stopped. Doctor's "guess" of the cause was that the few pills of ibuprofen that i had taken before had led to the bleeding (which i was a little bit doubtful since i just took few pills).

However, the bleeding started again last week. Went to hospital and i had the pouchscopy on the following morning. They find some ulcers from the pouch. I was then prescribed again 10 days ciproxin which again stopped bleeding after 1-2 days. 

I'm now quite puzzled (and worried) since i don't really have any other symptoms or pain, just this massive bleeding. If it starts again after my current ciproxin ends, what should i do? 

One adding to my previous post: when i wrote that i didn't had any pain, i actually had really bad lower back pain which radiated to my legs. I don't know if that had anything to do with my pouch bleeding, but have started to worry if the inflammation in the pouch could cause some other problems in the organs around it (causing the pain in my lower back). 

Jpouch, if the bleeding is from pouchitis-related ulcers then you treat the pouchitis. That's true whether your pouchitis symptom is urgency or bleeding. The same is true if the symptoms return when the antioibiotics are stopped: in that case you stay on antibiotics. 

I would say that if you are bleeding that badly perhaps you should go to the ER. Just a thought.  Also, just a few ibupropin can cause this kind of bleeding. When my son still had his UC, i didnt realize he was not supposed to take it, and caused a really bad attack. He was sick for  weeks. His UC was more acute as opossed to chronic. Good luck

dianne

Thanks for your reply.

Jeffsmom, I went both times to ER. I was hospitalized 4 days on june. Last week when this happened again i didn't needed to stay overnight but i was off from work 2 days. The heavy bleeding really takes a toll. 

Does anyone else have Pentasa (mesalazine) orally for pouchitis? I have it now (+ 10 days ciproxin) but don't really are sure if it does more harm than good to my situation. Mesalazine is not designed to pouchitis. I'm just a bit concerned about my doctor's capacity as I am an expat last 2 years and had a university hospital level care on my home country, which is not the case anymore...

To this date I have no idea what caused the bleeding. I haven't taken any Ibuprofen as I'm aware of not taking it and can't figure out any other connection to something I have done/eaten/whatsoever.

I was scoped, too, and everytime the doc has not seen anything specific. And I've been to three different docs. So until now this stays a mystery for me and I just hope to have it very rarely.

Best of luck to you as well!

Were you just scoped in your j-pouch, or upper GI too? With the black stool and bright red bleeding, I would be suspicious of an upper GI bleed. Sometimes we assume everything is the j-pouch and ignore other possibilities.

Jan

I'm not sure. Two of the three times I had this problem I definitely only got scoped in the pouch area. The other time I'm not exactly sure as I don't remember what kind of examination I got, but if I had to guess I'd say it's been pouch only as well. 

So yeah, upper GI bleeding can't be ruled out I guess, although I have no idea why there should be any kind of problem that can cause this symptoms.

Upper GI isdues are extremely common. Gastritis, ulcers, you name it. You can have bleeding without much in the way of other symptoms. But, if you don't consider an upper GI problem, you won't find one.

Jan