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I posted in more detail in General Discussion, but the short story is that I will be having my pouch removed and a permanent ileostomy constructed. I am actually looking forward to it as I cannot continue living the way I have been. Very sad to lose my pouch, which always worked well, but the repeat & extensive fistula damage is too much.


Having said that, I need to hear the life with a perm ileo is good... I've had a lot of problems with the temp ileos I've had, but those have all been loop ileos, so I think the permanent is different because it is an end ileo, yes?




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Gin, I've had me perm end ileo (yes, end is easier than loop - I've had both) since January 9 of this year. After an adjustment period with some leaks as the swelling went down, I met with my ostomy nurse who saw right away what appliance system I needed after which my stoma and I have settled in nicely. I am very, very happy that I went ahead with this surgery. I look better, feel better, and can do just about anything. It's a relief to no longer be a slave to my j-pouch and to be off all meds. My butt was sore for about four weeks, but not unbearably so. I know this can be a tough time, right before. You may mourn your pouch, no matter how much trouble it gave you. I did, for a bit. Then I started living my life. Look under "ostomy and skin" and you'll see all kinds of success stories. Those people were my lifeline. Good luck!

gin. I think lamb describe it correclty. Once I had made the decision to get rid of the jpouch beast and go perm ileo.. it was like a calm came over me. It was about 3-4months from that middle of the night decison til when it actually happened.. but it was a peaceful 3-4 months... like I knew I had turned to a better direction. With all that said... yes it is/was a huge huge surgery and please whatever you do make sure your surgeon has done boatloads of these surgeries and that your surgery will be done in a hospital where there are other expert docs from other fields readily available.. like urology, infectious disease, etc.. This could be the one last big hurdle for you so you can get on with your life. best wishes


I echo the other replies - once I made the decision to have my 18 year old jpouch removed and go with the perm ileo, a huge sense of relief came over me. It was something in the back of my mind for a long time, but once my jpouch was utterly dysfunctional and problematic my surgeon and I knew it was time to move forward.


I am 35 years old, had my jpouch removed Oct 2013, and the past year of my life has been the best year ever. I do what I want, when I want, and have had zero issues so far.


Best of luck to you and feel free to PM if you have any questions.

Gin, I echo the replies as well.  I just had my one year anniversary of my pouch excision.  Ever since the recovery I have had zero issues.  No pills, no pain and no fistulas (and no more need of daily maxi pads)!  It all healed up once the pouch was removed!  I too loved my pouch and was sad to say good bye, but the fistulas were just getting worse and there was no way to heal them.  


I feel so good and healthy and am doing everything I want!  My ileostomy is pretty easy to handle and doesn't add too much to my daily routine.  My favorite thing is sleeping through the night


Best wishes!


NO DAILY PADS!!!  Why is that the thing that excites me most?


Seriously, I'm looking forward to having this done and over with at this point. I wish I'd done it a year ago. Whatever; no point looking back and second-guessing, I suppose.


I have an appointment with my surgeon for June 2nd; we'll make plans then. The only issue now is timing. It absolutely cannot be scheduled before the Fall, but I don't know when after that. Soooo much stress at home. I know there's never a great time for a major surgery, but I am trying to balance finding a less-bad time.


Family doesn't know yet. Still too much going on around here and I wanted to wait until after I speak with the surgeon to have a better idea of things. Will also need to do some other investigations around everything, I am sure, so there is still lots of time before the surgery happens.


Now I just want to get it over with!



Dear Gin,


I've been reading your posts for a long time, and I've put off writing about my experience because most people deal with medical issues on their own terms, of course.  What I want to say is that I've been in all your shoes.  In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, was given a Barbie butt, and now have a permanent ileostomy. 

If a person is hooked up with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm almost 62 now and life couldn't be better.  My husband and I are finally able to travel and have lots of fun.  Our lives are no longer on hold.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.



Well, in my case, the pouch removal is because literally everything else has failed. The stupid fistulas keep recurring -- and I haven't been able to minimize symptoms and live with them, unfortunately. Repeated infections, pain, not to mention constantly pooing myself, one way or another (so to speak). At this point, having had a pouch advancement which has not healed completely well (I'm mostly continent as long as I only eat white bread, rice, and bananas) combined with the development of yet another new fistula really leaves no choice. Either I continue to poo myself several times a day as well as fight constant infections and pain or the pouch comes out. Hasn't been that difficult a decision...



I've been suffering with an RV fistula for a few years now.  I recently had a temp ileo to allow the area to heal before attempting to repair it and my jpouch.  I hate the ileo and want to at least try and save my pouch for now.  I'm just trying to decide who to let do it, Beck or Ashburn.   The RV fistula is so painful I can barely function most days.  I hope that you find relief from your long battle with an RV fistula.  You deserve it!  😊

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