Going from j-pouch back to ileostomy

Dort, I will be having my pouch removed and a perm ileo in the Fall. The questions I asked my surgeon were:
1) Same stoma site or different?
2) Open or laporascopic?
3) Output? I was told that it will be a bit more due to the pouch being removed and
less intestines available, but nowhere near the output or difficulty of the loop ileo.
4) Effects on sexual intercourse. Scar tissue can make it painful but a lot of people
on here have had no problem once healed.
5) Recovery time as it affects YOUR lifestyle and profession. I teach exercise classes,
so I need at least 8 weeks before I can go back to work.
6) Any possible complications from this surgery or difference in recovery compared to the
previous surgeries?
I believe the fewer questions you have before the surgery, the better. I also believe that having the pouch removed is not a failure or the last resort. If it brings peace of mind, then it's the right thing to do. Even though my surgeon tried to get me to have a less invasive surgery - mucosectomy - I need to get off this roller coaster and onto something more consistent. I started going to an ileo support group (I am a bit like the curious animal at the zoo to these people with my j-pouch!) and I plan to continue after my surgery. Good luck with your consultation and everything after. If you'd like, we can share when we're done.

Lambiepie - Thanks for your detailed response.

Lambiepie - I saw the surgeon yesterday and your questions were very helpful. I am scheduled for reversing my j-pouch on July 16th. I only wish they could do it sooner.

Hi- I'm really curious about this! I've been debating having my j-pouch reversed. My cases of pouchitis are getting worse and worse, lasting longer and longer. I still have medication options but am strongly considering surgery. Between my first and second surgery I felt really healthy. My output was easy to manage. However, between my second and third surgery I was up every hour to two hours to empty my bag. I absolutely couldn't live like that forever. What have your doctors said about what it will be like after reversal? Thanks for the feedback!
Amy

Hi, I am in a similar position. Ten years this fall with my j-pouch and the last few years have been difficult with pouchitis and leakage. Meeting with my surgeon to go over pouch removal and creation of a permanent ileostomy. If anyone has thoughts on these questions I would appreciate it:
Laproscopic- is it possible?
Time in hospital before discharge?

Thanks

I just had my 15 year old j-pouch (plus the rectum) out this April. Laparoscopic surgery was not an option for me. My perm. ileo. is in the same spot as the temporary one I had. I was in the hospital 7 days and I told myself 8 weeks of recovery, but I was up and off the pain meds at week 4. I took it easy for those eight weeks and I'm glad I did because I needed to be fully ready for life at that point- and I am.

Laura

Dort, good luck with your upcoming surgery. I wish mine were sooner! Can anyone else here answer this question: if you've been told you can't have the procedure done laporascopically, what is the reason? Is it because the pouch adhered to something? How can they tell this? By CAT scan beforehand? That's one question I forgot to ask my surgeon. Sean, laporascopic is definitely possible - my surgeon told me that's the plan for me. He said 5 days in the hospital if no complications.

Amy, I was told by my surgeon that a perm end ileo's output is possibly more than a temp end ileo but definitely less than a temp loop ileo. He said it's nothing that an Immodium can't manage. Now this is the same guy who told me that I "might have an episode of pouchitis here and there after takedown" so.... Laura can probably answer this better than I can.

I had my pouch removed laproscopically. There were two surgeons involved and when they took a look one was going to go forward and the other said they needed to go with open surgery. The reason was adhesions. The pro lap. guy prevailed and it was successfully removed took over 4 hours. FYI I also do not have the Barbie Butt The anus was left intact at my request, as I didn’t want to deal with the butt wound and I frankly didnt want to remove any more of my body then needed. I had UC and those with crohns this may not be a good option. So between the laproscopic surgery and not having the anus removal I recovered really quickly. Its been about 1.5 years and I am doing very well with the end ileo.

I might also note that you may want to make sure they leave as much small intestine as possible. One never knows what the future may bring and I never want to deal with short bowel syndrome. I say this because when I asked exactly how they were going to do the surgery I was thinking they would just cut the small bowel at the top of the pouch and pull it over for the ileo. This is not what is always done. They apparently sometimes cut the bowel for the ileo were it passes the stoma site and then remove the pouch with some length of bowel attached to it from the body. I insisted they save as much bowel as possible. I take no bowel thickeners and though it varies generally have oatmealish output.

So Chiromancer, you did not know whether your surgery would be open or laporascopic until they began the procedure? I also didn't know that leaving the anus was even an option. Did you get any resistance from your surgeon with that request? I'm just curious. Surgeons can sometimes be strong- willed.

Don't understand how everyone can just see their surgeon and have their pouch removed? With all my problems I've been begging my doctors to remove mine and yet no one will. See my signature, I've been dealing with this for 15 years and this last pouchitis attack since last Sept.

AllyKat, I can't imagine how frustrated you must be. You should not have to suffer like this and be met with resistance. Do you have other surgeons in your insurance network? I can give you the name of mine if you'd like to PM. Maybe he's in yours. He's in the city and has removed a lot of difficult pouches before so he has a lot of experience.

I was told they would try to do it laproscopically but there was the possibility they would have to do an open surgery. I had very good communication and relationship with my surgeon whom I like as a person. He was more than willing to take the time after an exam to answer all my questions.
Regarding leaving the anus, had I not brought it up it would have been removed. It is not that unusual for people with ostomies to have their anus left in place. It seems really unusual for a removed J to leave the anus. I have had no issues with it, feels "normal" down there, a bit of mucus wipe with toliet paper once a day very minimal. Not sure why everyone has it cut out(Crohns is an issue). Now let me make clear we are talking anus not rectum (already long gone) people often confuse these. We are talking about the anal canal and associated tissue. Regarding leaving it the surgeon said I should have it periodically scoped (its only maybe 2 inches or there abouts). I have had it looked at once since surgery and everything looked good.

I've been post op 1 yr after removal of colon for cancer. I suffered 15+ years with colitis. I've had no problems with my ileostomy once I accepted it and learned how to work it so have been on the fence with getting the j pouch. I love feeling fine without issues and being able to eat without pain. I just located this forum and had reservations about joining since I don't have a j pouch but I see many go back to the ileostomy. For those that tried the j pouch do you regret it? And maybe wish you didn't try it? I had a tough time last year being in the hospital 31 days,12 of those in icu due to sepsis. My surgeon doesn't recommend this j pouch but said he'll do it if that's what I want. For those without IBD, they think the ileostomy is the worst thing in the world but I find it so liberating and have not enjoyed this peace of mind in so long that I can't even remember what it was like to not have pain until recently. But I wonder if I'm missing something by not having the j pouch or if I can imagine lining with a permanent ileostomy.

UCcured, you're liable to get different responses to your question, depending on people's outcomes. Some with failed pouches say they're glad they gave it a go. Others who are suffering with their pouches will say they wish they stopped after the first procedure with their end ileos. One poster suggested "you rule your ileo and the jpouch rules you." You really have to consider things from a physical and emotional perspective and what in life is important to YOU. You may want to peruse this site and read some of the threads regarding this but, like any other subject, you're going to see both sides and their reasons for feeling the way they do. Lots of good info and things to consider. Then again, there will probably be more info in response to your question!