That is too much blood to put off for 3 weeks, especially if it keeps on going. Is your surgeon in town? Can you get in to see her/him? I think you need to be seen by someone that knows you can't have a colonoscopy but a pouchoscopy!

I don't know how large of an area you live in. I've had a bowl of blood before with cuffitis but just one each time and then smaller amounts. I thought people with pouchitis didn't have blood. Did you have blood before?

You need to find a surgeon or a GI that is very familiar with k-pouches quickly. I hope the bleeding has stopped.

Ulcers in the pouch are not the same as cuffitis. They are one of the many manifestations of pouchitis. Like a stomach ulcer, they can erode enough that blood vessels are exposed and opened, and that is why you bleed. Once you were stabilized and the bleeding stpped, it was appropriate to send you home, with instructions to return if you continued to bleed.

Even if your GI is unavailable, I would contact his office and find out who is covering urgent business for his patients while he is gone. It is preferable to have your scopes done by someone familiar with your history, for obvious reasons. You need both upper and lower endoscopy because they probably need to start looking at he possibility of a Crohn's diagnosis. You could also inquire about a small bowel MR enterography to examine your entire small bowel. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369125/ Of course, only with the scopes can biopsies be done.

Hopefully, the bleeding subsides, giving you more time to sort his out.

Good luck!

Jan

This is what a pouch ulcer looks like - see attachment. 4 larger ones and a few smaller ones if you look closely.

Thanks for all the information and the picture. The visual helps me understand. Unfortunely, I am having rectal bleeding again today. This is like a once a month ordeal Today is the worse I have ever seen it. The GI gave me another dose of Flagyl 3 times a day for 14 days

I know what ulcers are but not to sure what cuffitis is could some one please explain to me what it is? How you get it? How you treat it? What symtoms to look for? Thanks in advance to any replies!!!!

It is essentially inflammation in the retained rectal cuff with the j-pouch. Basically, UC, and treated the same, but mostly with topicals.

Jan

The cuff is the residual colon, just north of the anus, that the pouch is sewn to.

Cuffitis is essentially leftover colitis, limited to what is left of your colon.



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FYI
Most j-pouches these days are attached to the rectal stump using the double staple procedure vs sewing it to attach.

In the double staple procedure approximately 2 cm of the rectal tissue is left at the stump to staple the pouch too and they use 2 staples. It is weird seeing them during a scope as they seem huge on the screen.

In the hand sewn procedure they usually do not retain any of the rectal cuff and therefore patients do not get cuffitis. This procedure makes the patient more likely to have incontinence.

I think only 4% of UC patients get cuffitis but can not remember where I am remembering this percentage from. Knowing these odds I would have selected the double stapled procedure going in. I would have searched the nation for a brilliant surgeon using the hand sewn procedure if I had it to do over again. I am in the 4%.

Those getting pouches for other reasons, other than UC, do not get cuffitis.