Hi,
After have 2 different j pouches fail and many many other problems - I am going for a permenant ileostomy. I was wondering if someone who has been through this could tell me how the surgery was and recovery time? And, was it worth it? I am having a very hard time with this - I have tried for the past 10 years and eight major surgeries to keep my pouch, but it had become apparent that it is just not able to function properly.
I really want to get on with my life, I feel like it has been on hold for 10 years and I have missed so much of my girls (9 and 4) lives.
-Mikaela

Mikaela,
I just had it done this past 3/11, and it was definitely the most difficult surgery for me, because I had all of my butt removed, too.

The removal of the pouch and going back to the permanent ileostomy part wasn't a big deal in terms of pain and recovery, but I'm 11 weeks post-op today, and my butt is STILL recovering.

Granted, it's NOTHING like it used to, and I'm pretty much back to doing everything I want to, but the last of the stitches just started to dissolve last week, so there's a little discomfort- not that big of a deal.

I'm not going to go into all of the gory details because I've already done it several times throughout the forum, but would be happy to talk/chat with you offline and answer any/all questions you have.

Feel free to PM/IM me, and I'll shoot you over my contact info...

//Todd

Hi Mikaela,

I know exactly how you feel having gone through 8 operations in as many years to try to fix my failing j-pouch. Like you I feel that my life was put on hold for all those years but now I can finally enjoy all the things I want to in life.

My recovery was complicated by MRSA and a near fatal series of seizures due to a junior doctor overdosing me with Pethadine so I'm not the best person to advise on recovery. However I can tell you that my butt was no more problematic than my other wounds and once the stitches had all dissolved I really didn't have that much pain from it.

It was a long recovery for me because of the MRSA and I had to have another full laparotomy 2 years later because the infection had caused so many adhesions. However I am now at the healthiest gut-wise that I have been for years so ultimately it was the best decision I have ever made.

JillM is our poster girl for recovery from j-pouch removal and will almost certainly be along soon to give you her experience. There are others too who had a smooth recovery so don't think that you will automatically get any complications with this surgery. You could very well just sail through.

Hope you can find peace with your decision.

Take care

Shell

I thought you might like another fresh perspective. I am 4 weeks post-op and it has been a pain because it has gone so slow. Like Todd said, my ileostomy is fine and I've never had trouble with my stomach healing up...but my bum is not healing quickly. It is hard because whenever you walk it puts strain and friction on that site and so it is a longer healing process. Will you have time to really rest and stay off your feet? You didn't mention if you would be having your rectum removed and th whole nine yards. If it is just a pouch removal I assume the recovery is much quicker. I am looking forward to being done recovering and having my life back (really bad peri-anal fistulae) I too was motivated in part because I have a baby and didn't want to spend his life sick and unable to do the things that most mothers my age(24) get to do. So, the tough part is the length of the recovery and the annoyance at not being able to speed it along. If you do this make sure you have the time to invest in recovery so that complications are minimal. Good luck, it is hard to let go sometimes but it sounds like what you would be letting go of has been beating you over the head for years. I say drop that sucker!

Thank you Marcene! I'm not sure if they are taking everything out yet - I need to ask tomorrow. I will be able to take time for recovery - although I always try to do to much too fast, so I will really hold myself back. I'm sure you knwo what a hard decision this is, but I just can't fight anymore - I need to be there for my gils taking care of them. They are so sweet and try to take care of me and it just breaks my heart. And my 9 yr old is so active and doing so mant activities it kills me to miss her stuff sometimes and I know it has to affect her.
Thanks for you kind words!
-Mikaela