im desperate

Gee, all this bleeding and you are not in the hospital?! This is definitely not typical pouchitis. Does your doctor know about all this bleeding?

Jan

Jan my dear I forgot to mention I went on er on monday and now im hospitalized.
both the doctor and the surgeob told me it's pouchitis and want to treat as it.

what do you think??

Hey Ikh. Sorry to hear about the recent troubles. Has your doctor taken a look inside the pouch with a scope yet?

nope. they decided it's useless and they think the drugs i mentioned are just the only necessary thing to take.

I had a lot of bleeding about a month after my first surgery to remove the colon. They "officially" called it pouchitis, although my surgeon said it was actually isolated to one small bleeding ulcer in the pouch - maybe due to the ibuprofen I was taking at the time (I was also suffering from some kind of stomach virus at the time). They scoped it and while they were in there clamped it - shortly afterward the bleeding cleared up.

I'm no doctor, but I would insist on a scope. Although in my case, I never have to - my doctor usually wants to see for himself what's happening if a simpler test doesn't give him a clear idea. So I hope your doctor isn't just being lazy... Seems like there could be lots of other contributing factors to bleeding, especially if it's a new symptom for you.

I agree. If you have a little "bleeder" in there, none of those medications will do anything. With a scope, if there is a specific site of bleeding, they can deal with it. On the other hand, if this is just "oozing" from all over, all you can do is reduce the inflammation best you can.

Jan

Thanks Jan. Please all tell me your thought on my situation, which I resume now.

On the last months I noticed increased bm, some gurgling on the bowel, bad odors when having a bowel movement, and sometimes a bit of bleeding. No urgency at all. Just much discomfort and cramping. I think that this was clearly pouchitis. I began to take vsl3 2 times but no success at all.
Last monday I began to have massive bleeding, I had a total of seven or eight bowel movements with shocking bleeding; after the second I went on hospital.
They put me on tuesday on IV metronidazole and ciprofloxacine standard dosage.
On wednesday I began to take the antibiotics by mouth adding mesalazine suppositories and pills, I refused to take budesonide as I wanted to see if things would have improved with standard therapy (antibiotics).
On monday my PCR was 36, thursday after three days of therapy it was 14.
My hemoglobin was 13 on monday when I began to bleed, on friday was 9.9 but doctor said it's normal as I had massive bleeding.
I came back at home on friday and still having the antibiotics.

Now my bowel seems to be quiet, I have still no urgency, but I feel it empty most of the time, when I feel that the pouch can be emptied I don't wait and go, so in a 24 hours I think I have about 4 or 5 bowel movements.
I still see some bleeding but not always, sometimes I see a bit more bleeding, sometime none at all. I'm eating just meats with some zucchini and carrots; and still take 2 vsl3 per day plus an Activia youghurt (is it useful?)

I'm still very very worry and the nightmare of the days when I had a pancolitis are ocme back.
Just I'm not expecting this bout of bleeding pouchitis could pass. And I'm still a bit desperate as, apart this not-so-much-but-still-there bleeding, the pouch is functioning well.
My doctors didn't want to scope it, and it's no question they never scope it at the moment. I just should change hospital but I'm not sure someone would scope it at the moment, so it's difficult for me to have a pouchscopy.

I'd like to know if you have some advise to give me, or some thought, considering all the factors I said.

Plus, I don't think it can be cuffitis as I don't have any urgency at all. Still I'm taking suppositories. But I think I'm one of those rare case with bleeding pouchitis.

Did they rule out small bowel C. difficile infection? This can cause significant bleeding. Other forms of dysentery type of infections can also cause bleeding. Taking probiotics is like spitting in the ocean to make it less salty in these instances, so no surprise that VSL#3 was ineffective. Even for pouchitis treatment, it not considered effective, unless it is a very mild case. Yogurt is a great food and useful for maintaining health, but you cannot cure anything with it. Once in remission, I see it as a good diet choice. But, there is no panacea to guarantee pouch health. They are now leaning to a low carb diet, particularly simple carbs, to keep bacterial overgrowth in check.

Anyway, small intestine bacterial overgrowth (SIBO) is becoming more and more recognized, and if you have serious pouchitis symptoms without evidence of pouch inflammation, then that diagnosis should be considered. If it was just irritable pouch syndrome (IPS), there would not be bleeding and response to antibiotics would not be as good.

I agree that if you had any serious cuffitis going on, there would likely be urgency, but pouchitis usually causes some urgency too. The primary difference between pouchitis and cuffitis symptoms is the bleeding.

Jan

The bleeding 99% disappeared but I still feel some small pain when stools arrive in the pouch, which disappears a bit retaining. But a sense of disconfort and summing up I still see some reddish drop in stools, will it eventually disappear? Should i continue antibiotics until it is completely fine?

I certainly would finish the prescribed course. If you continue to see improvement and have refills, I'd keep taking it until you are feeling more normal.

Jan

When I Had bad bleeding I found that cortenema always worked.

C.diff always caused urgency for me and more than 5 BM's daily with and without a colon. The flagyl could get rid of c.diff but I don't think cipro would. So I'm betting there is some other reason for the blood loss. That really puzzles me too.

It looks like whatever it was is clearing up but what a scary time! It looks like they threw the book of everything at you to treat it with and something is working.

I hope your depression is lifting as well !

Hi, I'm getting better but still see something red and it's no good... luckily only small traces; and you, how much time did you need for the blood to disappear?

It's passed more than 20 days now, and I still notice some bit (very small amounts) of red blood, moreover I feel that the more is thick and the more I retain it, the more I feel I get blood. I don't know if there is any ulcers somewhere and I'm afraid it could explode again and cause again massive bleeding.
I'm much more anxious now than I was until one month ago.
Also I'm experiencing anal itching (luckily not too much) as I feel the stools are too much acid.
I'm taking psyllium after lunch and I don't know if it's good, as probably it increases frequency.
I need to make bloodworks and see how my hemoglobin is and how the ves and crp are.
As for my frequency, I'm going about 4-5 times per day, but I could retain more (but as I'm afraid to retain I just go everytime I can and notice my pouch have something to expell).
Overall I'm a bit sad as I don't feel that this pouchitis is overcome too much.

IMO you don't need the psyllium if your stool is thick. Taking it shouldn't increase your frequency. It can increase or loosen stools for people with colons. It does the opposite with us, it sops up water and makes our stools thicker. Your frequency at 4-5 stool a day sounds great to me.

We have 30% more bile in our BM's than when we had our colons than when we had our colons, that's why my ostomy nurse told me to get it off of my skin right away as it's more like battery acid!

I would expect your blood to be going away if you are still using canasa. It sounds to me like you have cuffitis as you are feeling like an acid at your back door. That is what my active cuffitis sort of feels like. It in the rectal cuff and has ulcers on it, or at a minimum is inflamed and red. As our stool collects there it aggravates it and we can feel it more - I call it internal butt burn. That sounds a lot like "acid" to me. I too go every time I can as I think it is better to not let it set in my pouch and allow it time to give me more internal butt burn (acid stools).

Pouchitis, cuffitis and c.diff all cause a lot of stools and you had non of those from the beginning. That's one of the reasons they are so hard to tell them apart with out a pouch scope. For whatever reason they are treating you for everything.

Since you have been on this treatment plan for a while now doesn't it seems as things have calmed down? Will they do a pouch scope on you now? If I were you I'd like to find out what is wrong, without the risk of bleeding like you were.

I hope the doctors can do something to help your fears.

Please let us know and take care!