Life after jpouch removal

Crystal, I am sorry to learn that you are having significant problems with your j pouch.  I had mine for 30 years and it had to be removed due to recurrent high grade dysplasia in the anal cuff and weak sphincter muscles.  I got a second opinion at Mayo Clinic and they recommended an ileostomy, which I did not want considering its issues.  Fortunately, I knew about the K pouch and BCIR, two options that do not require an external bag.  I did further research on both of these procedures on the internet and opted to get a BCIR.  The surgery went well and I was doing many of the things I enjoy three months post-op.  I would expect the recovery time would be similar for an ileostomy.  When faced with a major medical problem, it is assuring when you have options and can chose the one that best fits your lifestyle.  Best of luck to you.

Bill

It is reassuring to know everything is going great for you..I have asked about the BCIR but unfortunately they said that wasn't done there any-more..I am terrified of this surgery and sad I will be losing my J pouch...I tried biologics , changed my diet but nothing seemed to help...I had ulcerative colitis ...but 2 years ago developed a terrible fistula ...my pouch is also inflamed and been on the toilet about 15-20 times a day..I guess I just want my life back and I am praying this is the right choice...

Thankyou so much for responding and all the best of health to you��

Crystal<3 posted:

so after 18 years with my jpouch I am getting a permanent ileostomy ..way to many complications and developed a fistula a couple years ago..I wasn't really keen on going permanent but think I ran out of options...So my question is ..What should I expect after surgery? How long in hospital afterwards? Etc..

thanks in advance��

Hello Crystal,

Just wondering whether you had the changeover yet and how you are going. I am facing the prospect of going to a perm ileo also, although it is not urgent at the moment.

If you have had the surgery, I hope you are recovering and will find yourself better off without being on the loo all day.

Sarah

Thankyou so much..

im scheduled for surgery May 24th and getting more nervous by the day. If you need to talk anytime...message me. Keep me posted .

Be positive. 

I was the same before I had it done. Anyone would be. It's a huge decision. But it's the right one for some of us. It was for me. 

Be positive. Life does not stop at the ileo. It gets better. 

I'm happy my cursed pouch and colon are gone and if you knew me I would be the last person to think that.  I put my self through two years of pouch hell before it was taken out. I should have never waited that long. 

Richard. 

Thankyou for the kind words ..I am so happy everything is going great for you...I pray I will be saying those exact words shortly..

But enough being sick ..I want to live life ��

Hi Crystal - this is a big decision. But once you've made up your mind that you don't want to live with pain and uncertainty, it gets easier. I remember thinking that, since having a healthy colon back wasn't an option, an ostomy was my preferred choice over a painful, unpredictable, hard to calm down jpouch. Sometimes, when you're scared of the permanent ostomy surgery,  your mind has a way of seeing the jpouch as "not that bad" - even when it is - just to avoid making the decision to get rid of it. When I was going through that, I wrote down every time it was acting up, every reason it was making my life miserable. I also wrote down the negatives of an ostomy. When I looked at the final list, the positives of getting rid of my jpouch and of an ostomy far outweighed the negatives. The list was my reality, my truth. It really helped when I would start to doubt myself. Please try to trust your instincts. They will steer you in the right direction!

Everything  You said is so true..

My jpouch has been nothing but problems and after a fistula appeared 2 years ago I felt so defeated. 

I am scheduled for surgery May 24th for Jpouch removal and permanent Ileostomy..

I am very nervous but I am finally ready to start living..

Thankyou so much for the great advice..It makes me so happy knowing you had a positive outcome.All the best to you��

Crystal, best of luck tomorrow. I'm sure you're going to have lots of good energy and thoughts coming your way. Try to stay positive and please keep us posted when you can :-)

Good luck. 

It will be good. 

You are at bottom but coming back today. 

Richard 

If your out there. 

How are you doing? 

Good I hope. 

Richard. 

I hope all is well.

I am still in hospital ..got an ng tube today...I guess my stoma is so swollen that it is not passing lots..she said she had to make incision tighter around stoma as to not get a hernia in future...I really want to go home..not sure how long I will have this tube for.

Tubes suck! In more ways than one. I had one also. 

I do hope you get out soon. Good luck. 

All our stories are a bit different. I was in 11 days after removal.  Not because of problems. My surgeon didn't trust me. Lol. 

Get better! 

Richard. 

Crystal, hopefully just a blip on your road to recovery. I really hope you get to go home soon!

I still have my j pouch but then I still have a while to go until it's been a year. I hope everything works out for you Crystal.

Hello, Crystal. How is everything?

I was in hospital for 2 weeks..I had some complications but am home now..I am very sore ..Especially my behind...I hope this heals soon..

is it normal to have like a clear bloody leakage? And for how long.

i can't wait until I feel better ..I think this is the worst surgery I have ever had ..

Thankyou for asking how I was doing

Crystal, I'm sure you are so happy to be in the comfort of your home. I'm sure someone who has been through the removal surgery will post and let you know what to expect. Get lots of rest. I hope everything heals soon. 

Crystal, sorry about your complications. Things will continue to subside as you heal. I felt sore and tired for about four or five weeks....

Clear bloody leakage from where? I didn't have that, but I did have a sore butt for awhile. Don't let the doctor or anyone make you feel like you're being a baby if you need more pain meds for that. I needed more Percocet after this surgery than after my first three. When you get down or sad, read your jpouch posts to remember exactly why yours needed to go. I did that, it really helped.

Take very good care of yourself and take it slowly. At least you're on this side of surgery! And ask questions here - through all our different experiences, we can answer most questions.