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.