dtmack, I just had this discussion with my surgeon last week. Getting the pouch out can be tricky, but a skilled surgeon can do it with less chance of complications. There are a few threads about pouch removal under "ostomy and skin." One thing I took away from them is that, no matter what people had to go through to have the pouch removed, they all seem happy that they had it done. That's pretty significant. I'm sorry that attempts to fix your pouch leak didn't work. Maybe you'll be in the 60% and have a new pouch. It's just the not knowing that must be pretty stressful.

Derek,
I'm so sorry to read this. I don't have any words of wisdom but just wanted to pass on well wishes to you. Sending good vibes your way and I'll keep you in my prayers.

Derek,
I don't have any experience with j-pouch extraction either and am sorry you are facing another huge surgery. I hope which ever surgery you have that it works out well for you. Bless you and your family.
Paulette

dtmack, glad you didnt end up trying the endo stitch procedure. I was first and will be the last. It was not flexible enough to do what it was supposed to do and basically punched another hole in the pouch. Ended up having surgery 6 weeks ago and found out Wednesday with scope with Shen, that the suturing right below the hole to seal the pouch off from it did not take. Hole is there again. Shen stayed in during the surgery and they said everything looked good when they sewe me back up. The tissue just would not hold the sutures. Shen is willing to give once last shot at it with the scope and use the largest bear claw with fibrin glue. Odds are slim and i doubt it will work, but i have to at least try one last thing.

Im done with surgeries for now. If Shens procedure fails, like i'm sure it will, I am just keeping my loop ileostomy and pouch in place. Surgeon said I can stay as is as long as no issues. Whos to say might have some in future but address whatever then at that time. Pouch removal is a huge surgery and I will not or cannot miss 2 months of work, financially drained from all this, and most importantly, refuse to lose any more time with my 8 and 7 year old daughters unless its a life or death situation. I had 1st surgery over 6 years ago and i have been through hell ever since. I hate this damn bag more than anything, but i love my daughters alot more..

good luck to you buddy!!

Thank you for the kind words all.

I appreciate your view Poucho, but i have 3 fistulas from the leak that have punched holes to my stomach. The pain is awe inspiring. Hence, i am done.

I have read the other posts in the other sections, but i am hoping someone can kind of help prepare me for what i hear is going to be pretty tough.

I'm sorry, too! I hate disease and holes where they shouldn't be.

The decision to remove my pouch was the hardest decision I've ever made. My ileostomy is permanent and permanent is permanent. And I was 34 years old and I still can't believe it was time to say good bye!. RIP, jpouch.

I had my 15 year old pouch removed this April. Maybe you already read my other posts about it. I'm doing awesome and it's been 5 months. Yes, it's a major of major surgeries. But, yes, by God's grace, I did really well! So much better than the recovery of my original colectomy (when I had so many complications- think 31 days in the hospital, Picc lines, drains, a total nightmare). This April, I was in the hospital 7 days due to ileus and had to run to the ER a week later because of dehydration, but otherwise it was straight forward recovery. I planned for a full 8 weeks of recovery (and lining up tons of daily help at home and with my 2 little ones), but I was almost healed and feeling good by 6 weeks. The pain was worthy of all those painkillers for 3-4 weeks.

I did what they recommended: walk every day, eat lots of protein to heal, drink a ton, rest and sleep a lot and don't lift anything. Wounds take a while to heal, but they do! I had a full abdominal incision as well as my new Barbie butt. That's a lot of sutures to dissolve and heal.

But here I am- 5 months later- no drugs, no pain, no leaking, no running to the bathroom, no waking at night.

I don't know if you pray, but I prayed like crazy. I even asked perfect strangers to pray for me (sort of kidding!). Lord, be merciful! Any surgery comes with many unknowns and possible risks. Lord, spare us!

Feel free to send me a PM if I can answer anything else. Best wishes for a healthy future!
Laura

Laura,

Thank you so much!!!!!

I head in on Monday. Your post was exactly what i needed. I hope my outcome is as positive as yours. I will pm you later and let you know what has happened.

Thank you again so much. I am truly happy to hear you feel so well.

Talk soon

Derek

Good luck this morning!