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I am 32, was ultimately diagnosed with Indeterminate Colitis after initial symptoms about 18 months ago.  Started with a perforated colon and resection surgery that included a temporary illeostomy, after reconnection my colon was not happy which ran me through the list of pills, infusions, blood transfusions, etc until my local doctors sent me to a hospital for a complete colectomy last September.  Since then I've been doing great, not much I can't eat, I'm back to work and extra cirriculars that I used to enjoy.  My surgeon said that becuase of my diagnosis I am a candidate for a j-pouch procedure and at this point I've told her that I just want to be healthy for a while before I want to decide on the j-pouch. 

Some questions for those who have experience:
1. How does the temporary loop illeostomy compare to an end illeostomy?  They claim it's more difficult to deal with.
2. Has anyone had issues with the first step of the procedure that caused delay of the second step?
3. Once the j-pouch is complete what impact will it have on life?  I'm active and with the ostomy I have a perceived amount of control I'm worried I may not have with a j-pouch...when you gotta go you gotta go.
4. They indicate a j-pouch lasts on average 10 years...anyone have experience with it lasting longer or shorter? I expect that I will end up wiht the ostomy permanently at some point.

Any answers or additional thoughts on j-pouches in general would be greatly appreciated!
JD

 Reply posted for jdurfee.

Hi jd :) I am 33 and had the 2 step jpouch surgery earlier this year. I am doing great with it . I only had the bag for 6 weeks until my reconnection surgery . I really didn't like it but it was better the having no control with UC flares. I was in an ongoing flare for almost 5 years, with maybe it under control for  a month at a time every few months. I think the outcome really has a lot to do with what meds u are on previous to the surgery (all the steroids and immunosuppressants make recovery more difficult) and your surgeon. I went to 2 old school horrible surgeons who told me they HAD to do the open surgery procedure and I'd have the bag for life . Wrong! My amazing surgeon did it robotic and laparoscopic and I have the jpouch. It is such a tough personal choice. I hope u can find the answers/ research/ support you need. Blessings!
jen

 Reply posted for jdurfee.

Hi,

I was 23 when I was diagnosed with Ulcerative Colitis. I recently had the j-pouch surgery. I am going to be honest with you, I am so grateful for my surgery. It has been a god send for me. There are a few issues and complications that you may go through but it is a lot better than living with the active disease. 

I had problems with the bag because it will not attach properly and I leaked a lot. 

The problems I encounter with the j-pouch is irritation on my bottom (rectum) due to the constant stool passage. In the beginning of surgery, it is very difficult because you are adjusting to your new plumbing system. Adjusting to the J-pouch can take a while and everyone is different. I do not have that constant feeling that I have to go. Fortunately for me, I am able to "hold it." Yeah!!! Nothing compared to a full blown Ulcerative Colitis flare. 

I do go a lot to the bathroom- around 6-9 times a day. That is due to not having a colon. However, there are things you can do to slow down your system. For me is fiber foods and probiotics. I eat granola and yogurt and it really helps especially in the morning. I also take Imodioum in the morning and before bed. 

Good luck to you and I hope your surgery goes well. 

If you have any other questions, do not hesitate to ask. 

 Reply posted for jdurfee.

Hello,

I'm not familar with all the procedures you ask about.

I had the Colectomy about 8 years ago and have a J pouch.

It's not the end of the world, of course its not going to be the same but it's better than Cancer which in my case was possible future outcome.

You are younger than me so maybe your outcome could even be better than mine.  It effects your life for sure !

When I had the bag I had problems keeping it securely attached, not everyone has that issue, so It is much better for me with a J pouch.

The bag was fine other than not being able to keep it on and that isn't the case with all patients.

You have to watch how much food you eat--which determines how many times you go to the bathroom.

Focus on being positive, get 2nd opinions if you have any doubts.

Rich Sokol