Had my pouch removed about 5 months ago. It was done laproscopically. 4 to 5 hour surgery 5 days in hospital. I did not have my anus removed so I did not deal with peri-anal wound, thus far I am happy with the results. I had been disconnected previously and they also did a stoma revision which really helped in managing the end ileo. Pouch excision is a tricky surgery and because most J pouches are successful not many surgeons have much experience with excision, so get an experienced surgeon if you go that route.

Thanks for your response, chiromancer. In which cases would the anus not be removed? I have had cuffitis through and through so would that require the anus to be removed?

Had my pouch removed in April 2003. Have been great ever since! No wound healing issues whatsoever. Snapped back from that surgery faster than any of my others. Went the whole route- Barbie butt and all. So happy I did it. I was willing to take the risk of the perianal wound complications to get a shot at a better quality of life. I had no issues and definitely improved my quality of life 1000 fold.

Have had two babies since pouch removal. Been hiking, kayaking, traveling, swimming, running, touring playgrounds all over Boston :-)

It's scary, but it can bring great things. Never had a moment of regret.

Thanks so much, JillM. May I ask where you had surgery, who your surgeon was and if you anything in particular to avoid complications?

quote:

In which cases would the anus not be removed?

I dont think cuffitis would be a contraindication to leaving the anus as the cuff should be removed with the pouch, the anus is not involved with UC so it is an option to leave it. I would guess that if there is any indication of chrons they would probably remove it. It kind of depends on the surgeon. Mine usually does remove it, but I asked that it not be removed not wanting to deal with the wound healing issue. The wound can heal pretty quickly or be a very problamatic or anywhere in between, no way to know. So far I am very happy it was left in place as it gives me no problems and feels "normal" down there. I recovered rapidly from surgery and lead a very active life.

Like JillM, I had the best surgical experience out of my many. I healed quickly, without complications. I am healthier than I have been in years, feel great! I also have a Barbie butt, and the incision did take a long time to heal, but it wasn't bad. It was just sore for a while. Surgery was 9 months ago.

A few tips..wear boxers as often as possible, don't sit but lounge. Keep it as clean and dry as possible.

Best of luck to you!

Thank you all so much for your advice! So, there is indication of Crohn's for me at least just in the pouch but I will ask the surgeon about the option to leave in the anus. Is Dr. Remzi the best surgeon for pouch removal? I'm at NY Presbyterian-Weill Cornell and normally see Dr. Lee but I have seen Dr. Remzi before too. Does anyone have any recommendations about surgeons?

Remzi is very good but you better make an appointment now to see him. When I made my appointment it was 3-4 months out of a wait. Dietz is very good and is head of colrectal now I believe since Remzi has moved up. I just saw Dietz and Ashburn since she is doing Kpouches now. I loved her! But see Dietz if you can't get into see Remzi soon enough. I think for him you can get in maybe 1-2 months.

I had my rectum and anus removed when I got the BCIR. Easiest part was that. I had no pain down there and that was my greatest fear. I wore a tube while in the hospital and it was removed 2-3 weeks after surgery but I couldn't tell it was in there.

Hi
I had similar problems to yours except the fistula and decided to get my pouch removed, there was always a query if I had crohns . My pouch excision happened in march 2011, unfortunately since then I have had many more surgeries, I developed a fistula in my perineum , had a pre sacral abscess, I had numerous procedures to try and solve these problems but nothing has worked, two years later my fistula is now into my vagina and opens out into the perianal wound, which to be honest has never healed! I suffer terrible pain in my abdomen which my old surgeon thought maybe nerve damage but meds we tried did not help ! I have moved areas now and am under a different surgeon, who has said the op they need to do is major and they have to use some abdominal wall muscle to close the defect!
I think that a lot of people do not suffer such things following pouch removal, my advice would be make sure your surgeon is experienced in pouch excision, I don't think mine was and my new surgeon believes my old surgeon probably caused the damage to the perineum during the excision surgery ! As from the replies you have had on here my experience is probably in the minority, I do not regret having my ileostomy as that is a lot easier to manage then my pouch ever was! Im currently waiting for an appointment with my colorectal surgeon and also a plastic surgeon ( together ) as they would need to carry the surgery out together!
Good luck with your decision. Hope things work out !
Take care
Shelly x