I'm not sure how they would remove the pouch and leave the  tectal cuff as my understanding is when they remove the pouch ,the cuff is also removed and the anus  is sewn closed.  I know how hard the decision is to have more surgery and this is a big one.  Wishing you the best. 

Hi Saff, I don't mean to imply that the decision is all about this, but I do think that it heavily involves three things. One is whether or not you've exhausted all non-surgical efforts. The second is how much more you can emotionally take. Finally, it involves how you feel about a permanent ostomy. Actually, the second two are more important. I had an appointment for the Cleveland Clinic (my last effort) and I cancelled it because my need for consistency and to fully participate in my life was stronger. The pain, meds and emotional roller coaster were taking a toll on my mental health. I had my rectum removed and anus sewn shut and I don't miss it one bit. If people offer you suggestions and you're still open to them, then you're not at that point where you just want your pouch out. Hang in there. You'll know when you've reached a decision (reminds me of my mom, years ago, responding to my "how will I know I'm in love?" question with, "you'll just know." This is kind of like that!)

One more thing: when you've reached a decision, you will most likely feel calmer. Another way to know it's the right decision.

I think some of us on the board are also unfortunately in the midst of making this decision. I can tell you for me it has been emotionally heart wrenching. My quality of life is and has been very poor and my mental health is severely impacted at this point facing the permanent ostomy as I cannot deal with three more surgeries to create a new pouch that may just fail again. 

I lost my beloved father right before Christmas and I am still mourning his loss while trying to make these decisions, in addition to negotiating financial issues with one college student who wants to come home for one month and then move back out west for the summer where she attends school who is trying to find students to share a house rent and now feels she needs her car out there to work and do a so called 8 hour a week internship that does not count as college credit with no pay. We removed the liability off her car for the time she was in school to SAVE money.  She is still trying to work out how to cover summer rent expenses with jobs as I told her she is free to pursue this if she can cover her expenses for the summer months.  I feel is is unfair to expect her dad and I to continue to chip in even more money considering how expensive her college costs/flight/travel/car insurance costs/phone costs etc are that we are currently covering all of. She will be 23 soon and has one semester of school left after transferring out west and losing one semester's credits that we also covered, so in essence we have paid for five years of college for her to get a BA degree. She has not worked in two years since being at the school and passed up financial work study four semesters out there. This is a whole separate issue and I apologize for transgressing, but I am feeling overwhelmed facing all this with my medical crisis at the same time she returns home this week.

For others facing this difficult decision, I do believe we all come to an epiphany that any life pain free, regardless of the circumstances., is better than he one we are dealing with to exist. I wish you much luck with your decision. So thankful for this board and others who understand the isolation we may feel and difficulties we face. 

Lambiepie posted:

One more thing: when you've reached a decision, you will most likely feel calmer. Another way to know it's the right decision.

Om goodness.. That is so true.  Stress is still here at times but it's not directed straight to my guts and exit.  I have nothing there for it to stress anymore and it's a wonderful feeling!  Wonderful! 

I knew when it was time.  You just know.  You will too.  

It's all a personal individual decision.  But this is a great place to get others opinions.  That have gone through it.  And I have and don't regret it now.  I was fighting it.  No one wants to do it.  I didn't.  But I am on this side now.  And I personally made the right decision.  At the time even though I knew it was there were still doubts and I was afraid of another surgery.  All for nothing.  Of course I didn't know that at the time.  I was expecting the worst.  But I got the best of it. 

I wish you the best.  Yes.. I do.  You will make the right decision for yourself.  

Richard. 

Hi Richard, LampiePie, I'm already feeling more and more like 'it's time'  and that I'm ready for this. Yes makes me feel a bit calmer indeed. Its not easy to volunteer for another surgery. Jeane, my surgeon has indicated the rectal cuff can be left. That is my next hard decision to make - leave it or take it all out. Jeane I'm sorry you are having a similar battle, and other difficulties to compound it. I'll be seeing my surgeon next week and will probably lock in a date then..eek!.

Thank tiu. After another bad night I have made my mind up. I want off the chronic Cipro which makes me feel awful and I'm going w Remzi's suggestion. I would go in today to be done with this nightmare but it is Mother's Day.  Best of luck to everyone else going through these issues. 

I wasn't mentally ready to have my j-pouch removed so had surgery to divert from using it to a permanent ileostomy last fall.  I had a series of UTI'S after surgery. The antibiotics taken to get over them kept my j-pouch pain at bay for awhile.  

My j-pouch didn’t calm down as I'd hoped so it was removed 2 months ago. I was mentally ready. I wanted my rectal cuff removed as by then hated it and the cuffitis and strictures there. It is a relief to have it all sewed shut. I like that it is gone. I have wiped, washed, cleaned and been tourtured there enough. Good riddance! 

Therefore I understand your apprehension about the surgery. My surgeon wanted to remove my j-pouch when I had the diversion. She understood when I said wasn't mentally ready.  After I experienced living with a permanent ileostomy there was no doubt about getting all removed.  

Jeane,

I remember discussing your daughter's impending college experience when we first had our j-pouches. My dad is currently back in the hospital for the 3rd time this year and I am afraid he is loosing this battle. I'm sorry you lost your father. You are under a lot of stress.

When my GI at Mayo's made the appointment with the surgeon, himself and me about the surgery I knew my j-pouch was never going to improve. 

I didn't want to try for another kind of pouch. At 60 I want to get on with life and be able to plan life with my family and friends. 

Good luck with your surgery. Please let us know when you get it scheduled.

Thank you for the replies. I hope all who have recently had the jpouch out are feeling better and those on the fence as I am come to the peace they need to make this most difficult decision.  I do believe I will need to take the entire pouch out also as it have given me trouble since surgery 1. The finality is scary as you realize you have no other real options to get well.