Clicky, I understand your nerves. Did your surgeon say why this is a MAJOR operation? I've read this and still don't know why. Is it the precision of the procedure? The pain? The long recovery? My surgeon almost downplayed its intensity, so I'm confused. I'm having the ileo, pouch removal and Barbie butt all at the same time.

Hello,

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 fine. 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.

Caty

not time to write a long post so I'm just want you to re-read the last two paragraphs of Caty's post.

ANd I will re-iterate it is normal to be afraid. It is a BIG surgery and potentially a long recovery. But try to look at the other side. Better quality of life.

Mine was removed 2.5 years ago and I went running again for the first time yesterday!

Hi Clicky...don't worry about hijacking my post as any advice/feedback is welcomed...I'm seeing my surgeon next week as I have more questions...he downplayed the procedure as well...I guess from what I can gather from other posts is that this procedure is bigger then the original bc they are removing the pouch...a pouch that might have a great deal of adhesions depending upon how long it's been in the body...I'm guessing after 22 years in my body it's really attached!!! Also closing up the butt can't be easy as well...I'm very nervous like you but the remarks from others have been helpful...I have Crohns so I know my pain won't end with this procedure but I'm hoping for at least a remission for a bit and my doctors seem to think it will come...I wish you luck and speedy recovery!!! Debbie

Thank you so much for your feedback. Cathy, I am very grateful for your effort in sharing your story which has been very helpful for me, For me too it was the vaginal fistula that pushed me over the edge last year and made me get an ileo. That part is a bit better but I'm still so sick with the pouchitis - so I'm looking forward to getting it out - its just the process.

Liz - thank you for yor feedback too - I have read and followed your story with interest for the past few months in the lead up to this. Your sharing has been really appreciated too!

Goldie and Lambie - my understanding is that there can be a lot of complications from the surgery. My surgeon said that there are risks to the bladder, kidneys and sexual function (although I don't see why for women?). And it can be complicated getting it out due to scar tissue, it's location and any local issues (like fistula and inflammation).

Less than three weeks now....

Thank you all again for taking the time to respond.

Clicky, I wish you the best!

Liz, I to have read so many of your posts and was encouraged by them. I feel like I know (many of) you just by reading (and re-reading) all of your stories. Thanks for all the advice along the way!

Caty, you have a whole story to tell also! Thank you for sharing.

I'm in the same boat- 15 year old jpouch, 10 year old r/v fistulas, 22 surgeries, my babies are now 3 and 5 years old. My pouch and rectum were removed in April this year. I was sooo scared. In fact, I was scheduled a year and half ago and cancelled the surgery. I just couldn't do it! The surgeon said 60% heal well from having their jpouch removed. What?! What if I was in the 40%?! It's complicated (and a long recovery) for the reasons you mentioned, Clicky. Between disease and adhesions and what could be nipped by mistake...or what doesn't heal on it's own, etc all makes it "complicated, major surgery". Even so, my surgery took 3.5 hours and I had no complications (well, ileus in the hospital and then one trip to the ER a week afterwards for dehydration). The wounds take a while to fully heal, but they do! And my fistulas healed! No more drainage. No more maxi pads all.the.time. Sex is comfortable and awesome again. The concern here, that I read somewhere, is that the rectum can sometimes add a cushion of some sort, so without it, things can tilt and not be as comfortable.

I'm only 3 months out of this whole deal, but am doing so well and am so pleased with my healing. Like Caty mentioned, I sleep well at night. I can swim because "it's in the bag" and not leaking out of you know where. I finally got off the Cipro and Flagyl! In fact, I don't take any prescription drugs right now. True I have Crohn's, so I'm am healed of these issues, but not cured of the disease. God is truly good and merciful and I believe He will sustain me again!

Take good care of yourself these next few weeks. I was in good shape, good health (SCD/Gaps Diet) despite my issues and I think all this too helped for the bounce back. And plan for lots of help during your recovery. I'm a SAHM, but I chose to put my youngest in day care for 8 weeks as I knew I couldn't care for him then. Meals delivered, errands run by my friends, etc all helped me stay on the couch and rest. Now I'm 100% back into it all!

You have strength and courage! You can do this! Best wishes!
Laura

Thank you Laura. I had a few tears reading your post and I am grateful for your reply. I am so pleased for you that you are doing well - it sounds very well deserved! My kids are 1, 12 and 15 and my mother in law is moving in to help out. Thank you so much for sharing your story! All the best to you and continued best west wishes for the future !

Thank y'all so much for your posts. I have cried sitting here reading about what some of you have gone through. I am having my pouch removed October 3rd after having it for 20 years. My main problem is leakage. I am so tired of leaking and having butt burn all the time and having a fistula off and on for years. I am 66 and I know as I get older this problem will become worse. I cannot imagine being bedridden and having a leakage problem and who knows what may happen in the future. Even being laid up with a broken bone would be extremely hard. It is definitely a quality of life issue for me. My doctor says it is a six hour surgery and I am not looking forward to it or the recovery time but I know God has this and me in the palm of His hand. No matter what, I am gonna be fine. Thanks again.

Clicky - I hope you read this before going to Canada. Not saying this will solve all problems, but have you considered just giving yourself an enema when you get up in the morning.

I didn't have a leakage problem, mine was nothing would come out. Finely gave up one morning and tried an enema. Total success.

Giving yourself a daily enema is not a medical issue. My routine, an enema of warm water in the morning when I get up assures me a carefree day and a good nights sleep. As for sore butt and other side-effects. These go away with the routine.

Best of luck
BobS

I have given myself an enema every morning and every night for 20 years, but that is not working for me anymore. But if you have not tried it, you might want to give it a shot.

Best of luck, Clicky!