rE5

im very sorry to hear you are going through this. I can empathize. I've had almost 6 years of continual issues similar to yours and I'm depleted and worn down also. Who is doing your surgery? I am certain you will feel so much better after the recovery. I know it's a scary thought and a long operation , but try to keep the end in sight of regaining your health and life back.  Best of luck to you.  

Dr. Strong is doing the surgery. He's formerly from Cleavland clinic from what I understand so I don't think I could find anyone more experienced to do it. 

Good luck. Where are you out of?  Please keep us posted.  I sure hope you get relief soon. 

I had mine removed 15 months ago. 

All I can say recovery went fast.  Was fast.  Uncomplicated.  And I now have no regrets. 

Pure misery before removal. 

It truly is a tough decision.  But.  You know when it's time. 

Good luck.  And you will welcome back to some form of normalcy.  It's how I feel.  Normal.  

Richard. 

RES, there is little doubt that life will be better for you without your problematic J pouch.  I had mine removed almost 4 years ago for other reasons.  The surgery took a bit longer than normal because the pouch had been in place for 30 years and my surgeon had to deal with multiple adhesions.  However, the surgery went well and I had no complications.  I opted to get a BCIR (similar to a K pouch) since I strongly did not want an ileostomy with its associated issues.  The pouch removal and creation of the BCIR were done in the same operation.  If you opt for an ileostomy, you can get a K pouch or BCIR at a later time if you experience significant problems with it.  J pouch removal is a complex operation that should be done by a surgeon who has done many of them.  Best of luck to you and keep us posted.

Bill

I'm in Illinois near Chicago which is where I'll be going. Hoping to end this nightmare and get back to actually having a life outside the hospital. 

I understand.  Best wishes. A non functioning joouch is hard to deal with. I've been struggling a long time too.  

Sorry things have not worked out for you.  Best wishes for your future!

RE5- if u know & feel this is the best for your health & quality of life, you are doing the right thing. It will take some adjusting, but you know that- you have suffered enough & want health! I keep you in my thoughts- we are all here. BTW- I live outside Chicago too and Cleveland Clinic is always my go to hospital for my Kpouch & associated problems. I know from my numerous surgeries & visits to CC, Dr. Strong, one of the best next to Dr. Remzi (and Dr. Dietz, IMO) is an expert colorectal to have outside CC. I believe you are in excellent hands at Northwestern. Keep us posted! Kara

It is a difficult decision to make. Ithe sounds like you are in good hands. I had mine removed 10 months ago and am very glad I did so. My permanent ileostomy is 100% better than my temp ileo was. That was my biggest worry. I have a Mayo surgeon that did an excellent job including 5 hours of lysing my abdominal adhesions. Good Luck 

Did any of you have complications with urination? I'm scheduled to meet an urologist and a plastic surgeon before the surgery. 

As a male.  I didn't have any problems with that. 

I cannot speak for the females. 

Richard. 

RE5, I had my jpouch removed January, '15, doing so much better with my perm ileo. No problems with urination, and my surgeon had to spend an hour and a half detaching my pouch from my bladder due to adhesions. I never once doubted his capability and that is key. Sounds like your surgeon is experienced and you're in very good hands.

I have been getting a lot of bladder infections. After testing it was determined that I am not emptying my bladder all the way so theory is that is promoting infections. Now I self cathator once a day. I've had a hysterectomy too and have many adhesionsnso maybe that affects it.  I think it's good to have these other doctors involved. I also had pelvic floor P.T. before the self catching.

I am a lady vs a man with outside plumbing so not sure if it is even a problem for men.

Had another question and I figured I'd post it here. Has anyone had to have multiple stoma revisions? Temp ileo I had from the stoma was completely flat and a nightmare. I went to an end ileo and had it revised and it got better but it's angled and still leaks at the bottom. I'm going to talk to Dr. Strong when I go in for the pouch removal and I'm hoping he can fix it for good this time. 

 Before I had my pouch removed, I had an end ileo with the pouch disconnected  the stoma was under tension and because of that  my stoma was nearly flush and difficult to seal, lots of leaks. When they removed the pouch I had the stoma revised and everything works well. IMO the stoma needs to stick out a good 3/4" or so from the surface of the body (assuming the opening is at the top) for the function of the external pouch and seal(s) to work well. I spoke to my surgeon about that before he did the pouch removal and revision. It seems a small thing, but it sure can make life better and also simplify your appliance selection.

Kara Fred posted:

RE5- if u know & feel this is the best for your health & quality of life, you are doing the right thing. It will take some adjusting, but you know that- you have suffered enough & want health! I keep you in my thoughts- we are all here. BTW- I live outside Chicago too and Cleveland Clinic is always my go to hospital for my Kpouch & associated problems. I know from my numerous surgeries & visits to CC, Dr. Strong, one of the best next to Dr. Remzi (and Dr. Dietz, IMO) is an expert colorectal to have outside CC. I believe you are in excellent hands at Northwestern. Keep us posted! Kara

Kara,

If you don't mind I would like to send you a private message about what you shared in this post.  

Thanks!