Hello,
After reading a lot of the posts, I'm starting to second guess going forward with the final surgery. Not sure it is even possible to go back to the end ileostomy, but wonder if any of you that have had complications,regret getting the pouch?
Thanks!

The majority of people who have a j-pouch have very few if any complications. This forum is a support group, thus we hear mostly from and try to help those seeking advice for their complications.
I had my takedown in July 2010 and am very pleased with the results. My diet is unrestricted, I travel and exercise with no restrictions.
I would recommend you discuss your concerns with your doctor and he/she could tell you what to expect and the odds of developing any complications.

I second what Jeff said. It takes awhile for you and your pouch to get to know one another and patience is key. It's been a year since my takedown and it was rocky at first but my pouch calmed down and I learned to recognize things like gas and what to do about it like take Pepto Bismol. I don't regret going through with takedown. Generally if there's an issue with one's pouch, there is something one can do to take care of it. If that doesn't work, there's something else. Like Jeff said, discuss your concerns with your surgeon and GI.

Even though I am unhappy with the pouch and may well get rid of it I don't regret having tried it. The pouch is an imperfect creation that sometimes works great and in most cases works good enough. While a few of us both suffer with it to the degree that we at least consider removal, we are a minority even on this site, but a vocal minority. It is good to remember it ain't gonna work like a colon but probably will work OK.

My two bobs worth. It,s a lottery. Some people have a great result, some have problems. It is a risk you take. I'm not going so well at the moment so I regret it right now. When my issues get resolved I might feel differently. Trying to keep a stiff upper lip, but it's hard.

I have side effects, but ALL of them could have resulted from any abdominal surgery or even childbirth. I don't regret my pouch for a minute!!!

Gin

I love my J pouch...no regrets at all. You will never know unless you try and the odds that it will all be good are in your favor. If you don't mind the maintenance of the ileo, then there's nothing wrong with keeping it. I had a bad time with mine so I knew I did not want to keep it. Plus I have two family members with J pouches and they have done really well too so for me it was a no brainer. Good luck with your decision.

I was so very pleased with my temporary ileostomy that I kept it for a full year and even then was reluctant to give it up. My son convinced me to try it, saying that if I didn't like it I could go back to an ileostomy. Well, that was about ten years ago. I even cried on the operating table and my surgeon told me it wasn't too late to change my mind! Can you imagine?

This is what influenced my decision:

Since I have no faith in the economy and a person never knows what their future life situation will be like, I didn't want to have to depend on having to have enough cash to pay for all the needed supplies. Even with insurance, they're so expensive.

I had the same problem you did with my stoma being flush with my skin. I had to change the bags 3 to 4 times a day. I was down to my last one in the middle of the night one night and had no way of getting a new one. Thankfully, it lasted through the night, but I was so freaked out that I had to be dependant on a stupid bag to live my life.

If you have the surgery and it works out well, it'd be the greatest thing! If it doesn't work out well, you were comtemplating not having it in the first place, so you'd only be back to where you started.

I had my surgery in MN as well. Who's your surgeon?

VAST majority do great with your pouches and are off living life, not on this site. A support board is generally going to be most populated by those who run into difficulties, so do NOT take this board as a representative sample!

I did great with my pouch for 7 years, until a fistula surgery caused me complications, but still did quite well for another 12 years until chronic pouchitis reared it's head. I would never trade the past 20 years back in for the bag, never. Truthfully, I still hope to avoid it for another 20 or 60 years!

I would ALWAYS recommend someone try the pouch. ALWAYS!

Roni, my surgeon is Richard Devine. I had it done at the Mayo Clinic.

Mine was done in St. Paul. I sincerely hope things work out for the best for you.

-Roni*

Thank you all. It is very helpful to have this group as a resource and support!

I just had my jpouch removed last month due to chronic pouchitis and not wanting to remain on the drugs long term. I'm happy with my decision to become a permanent ostomate as I'm not sick any more and feel a lot better. That being said I would make the same choice all over again. I'm in a minority with chronic pouchitis and most of that group opts for drugs. You'll never know how well it will work unless you try. If it doesn't work out you can always have it removed but I think you owe it to yourself to give it a try.

One reason I went with the BCIR and sooo glad I did. My pouch rocks.