Bleeding

I did, but it was cuffitis (inflammation of the rectal cuff). It is basically UC in the retained rectum. The bleeding would come and go, was not severe, but was associated with some urgency and diarrhea.

Her doc could tell from a simple digital exam. The rectal cuff would feel bumpy and he might bring out some blood.

Jan

Thank you for replying. That sounds
like what is happening. She will have
It once or twice in a day and then it goes away for a few days.
Sometimes it is mixed in with the
stool and other times it is a drop
Or clump. Does that sound right?
Would she feel worse if it was pouchitis?

You can't reliably tell pouchitis from cuffitis by how bad you feel. The blood suggests cuffitis, but it's best to let the doctor figure it out with an exam. Both conditions are treatable.

Thank you both for replying.
I hope that is all it is.
I just want her to feel better and
get back to being a kid. So far
she hasn't responded well to medications.
If they didn't work before will they work now?
We tried the 5 ASAs and it didn't help with the
UC before surgery.

Yes it does sound like cuffitis. That has been my struggle, I think, because my UC started off as proctitis and I sort of just expected it. What helped me more than anything with the cuffitis was Canasa suppositories.

Thanks Endi. I will ask about cuffitis.
I hope the Canasa will work we tried them
Before surgery and it didn't help much.
She says once in a while it hurts
To sit for long periods of time and has
had some leakage at night but is
still using the bathroom 7 times
a day and 1 or 2 times a night. She is 3 months out from her j pouch formation.

Poor baby. It is difficult. It is trial and error but there are SO many options out there more than there ever was. I'm sure you will find the right treatment. Prayers and best wishes!

Thank you and we appreciate
your advice and prayers
It has been hard to see her
struggle and not be able to help her.
God bless and thanks again.

I experienced this on and off for a long time. I can now say I am free of the intermittent bleeding that often accompanies cuffitis. As others have indicated this is easily diagnosed and should be easily treated with anucort or Canasa suppositories and antibiotics if she truly has pouchitis as well.

Thank you for the encouragement It is so frustrating not knowing why she is bleeding. Our doctor is out for a couple of days, she is at IBD camp this week. It gives me hope that you have been able to treat yours. She had it once yesterday and has been fine again since.

Had more blood just now. The doctor
will do a scope if it continues.

My GI doctor prescribed Canasa because i complained of burning pain , diarrhea and bleeding.He ordered blood and stool test which i had completed yesterday. He said that during the procedure of sigmoidoscopy he did i had an inflamed rectum . Part of my rectum was removed from the surgery but that part of the inflammed rectum stays.
Canasa helps a little bit but i still have bleeding with my bowel esp. if i have to sit moving my bowel for awhile.
When do you know when to stand from sitting in the bowl?I felt i am done but right after i washed my hands i have the urge again to sit there and wait for another 7 minutes. Is this normal? I do not want to sit long because i am trying to avoid having hemorrhoid and the longer i sit there more blood comes out.
I am flying to Kansas to see my son and stay there for awhile but i am not sure how to manage batroom on the airplane. Any suggestions? Please help me...

I wish I could help more
We too are dealing with this
and are waiting for the scope.
My daughter too has complained of some
burning but we thought that maybe
it was the butt burn everyone
talks about. We are trying to figure
Out why she has intermitten blood
that comes and goes. Does yours come and
go?It sounds like you have seen the doctor,
Was it cuffitis?

My GI is never concerned if I have small amounts of intermittent bleeding. I experience this on and off along with having a chronically inflamed cuff which is manageable as of late with no rectal meds. He does, however, take biopsies every year due to the chronic inflammation. Hope that helps ease some of your concerns.

I have heard of a procedure that one of the larger hospitals in Cleveland does for people with recurring cuffitis. I think it is called a "mucosectomy". Maybe others can chime in on this who know more about it than I do. The only problem is that there is a risk of incontinence. But I think because this hospital is so experienced and does so many of them, the risk is really small. Basically, it is where the doctor removes the cuff area that is becoming inflamed and attaches the j-pouch directly to the rectal muscles. But many people do travel to Cleveland for this procedure.

Honestly, though, if it is cuffitis, it is so easily treated these days; I don't think you'll need to resort to that. Medicines like canasa suppositories aren't highly effective when you have your whole colon, but when all you have to treat is that small cuff area, they usually work really well.

Shortening/removal of the rectal cuff is called pouch advancement. This requires hand sewing and is a tricky procedure, easy to screw up. Mucosectomy is a separate procedure, often performed at the same time, in which the inner (mucous) layer of the bowel wall is kind of scraped off.