I have had several posts on this on how much complications and symptoms I have had since my take-down last April. But had over 20 years of bad Ulceritive Colitis.
Diagnosed with IPS. Chronic Pain. Have bad depression, anxiety and out of control diahrea and incontince... list is ongoing...
After almost a year of the doctors trying to find the problem. I got an outside opinion from a Doctor Schilling at UCLA (love him)and the small piece of my rectum that was left in order to attach the J-POUCH has serious colitis now. So they are recommending doing surgery again. Taking care of the colitis and then reattaching the J -Pouch. I am not sure how much of my rectum was left if I can go back to the J Pouch- and realllllllly dont want to go back to the bag. I am 31 years old and have serious depression when I had the bag before, I realize that I may not have a choice. But very bummed out.
Has anyone had this????????
And I am assumming this a pretty major surgery again. I have had 4 in the last two and a half years. I feel like my body has been thru so much, and I am still waiting for my permanent disability hearing so my emotional state is horrible.
If anyone can relate or has done this I would love to hear about it!

This message has been edited. Last edited by: Lindsay~n~SD,

I may be completely wrong, but I thought that the remaining areas of the rectum and such had the lining scraped out during the colon removal operation in order that UC could not return. Perhaps you might just want to ask this question just to check.

I am very sorry about your condition. After going through all that you have to rid yourself of UC and to have a pouch created etc only to find that you have UC again. It must be very demoralising for you.

But you are only 31 so you have plenty of time to get back on track and enjoy the rest of your life. I guess you need to steel yourself yet again

it is scraped if you get a mucousectomy,which is a very delicate surgery that not alot of doctors do.

When I had my surgery, they completely removed the rectum. They just connected the illeum to the sphincter muscles. If they would have left rectum, I'd probably be in the same boat as you. I hope that the surgery works out for you and you start feeling a lot better!

Goose is right - not many surgeons automatically perform mucosectomy at the time of j-pouch construction. That's because even for people with severe UC, leaving 1-2 cm of rectum is either not problematic or is manageable through oral or topical meds.

I'm not wanting to make any assumptions, so I'll ask a silly question: I'm assuming your doctors have tried you one oral and topical meds to treat your cuffitis? If so, what have they tried? Someone here might have a suggestion for something else to try prior to going through another surgery. The surgery your doctors are suggesting is both risky (incontinence) and painful.

There are a number of people who have gone through this surgery and would be able to respond / relate. Maybe you should edit your first post (the little folder icon at the bottom of your post after you are logged in) and change the subject line of the post to something like: Mucosectomy / Pouch Advancement questions. You might draw in those who have had similar problems.

Steve

Thank you for your responses, it has definatly educated me.
Now I am kind of scared if they do this surgery.
So if they completly remove the rectum I can still have my J-Pouch. Obviously I am asking this because I am waiting to get into my surgeon to ask questions.
I have done all medications including the enema's that have the steriod in them but they just run right through me. I was thinking the same thing this morning that those medications should have helped it. Although, when I had my colon no medications helped in the end...

I dont know what you have tried in the past, you did mention the cortifoam enema. Have you tried canasa suppositories? My daughter was diagnosed with cuffitis years ago and she did the suppositories, the cortifoam and started oral pentasa. She has been on the pentasa for years now with the jpouch and it has kept the cuffitis in some sort of remission. The pentasa didnt work for her when she had UC but the small size of the cuff it works for.