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Hi all!!  I need help!  I go to my local support group here, but everyone in the group has Crohn's and has scared me to death!!  My reversal surgery is Monday the 8th.  They all had horror stories about how they had accidents everyday a few times a day.  I know for UC patients it's different.  At least I hope it is.  Please give me all the input you have.  My pouchogram showed no leaks, my surgeon says my sphinter muscles are strong, and he sems to think I shouldn't have too many problems.  I just need to hear it from the horse's mouth.  How many accidents have you had?  Can you control when you go?  How many times do you go a day?  Immodium???

Thanks!!!!

 Reply posted for zroc79.

Hi.  I had the jpouch surgery and reversal done back in the summer of 08 and straight from the horses mouth, I am doing great! I have never had any problems with leakage.  I do go 6-8 times a day.  I would advise you to get the flushable wipes because the stools do tend to be loose and the wipes really keep you clean back there.

In the 2+ years since my reversal, I only had a couple of issues.  I had 1 case of pouchitis which was a few weeks ago (2 years after surgery) and even then, there was no leakage or accidents.  10 days of antibiotics cleared it right up.  The second issue happened about a year after reversal.  It was a blockage in the small intestine because I ate an excessive amount of rice.  Apparently, rice tends to expand after consumption. I never had an issue with pasta though.   Good luck, and I hope this helps you.

 Reply posted for zroc79.

I had my 2nd attempt at a reversal in June 2010. Finally it all went well. It will take time for you to trust your body again.I know I had the same conerns about accidents.But to be honest I feel It was the best choice I have ever made.Life with a j pouch.Is wonderful compaired to what life was like with UC.I had no life.I didnt want to leave the house.Things will get better with time is what the Nurse told me.She was right.Everything takes time.You will see a year from now you are going to be very pleased with how much freedom you have.I can say I got my life back.It has its ups and downs.But i can live my life.Im happy.

 Reply posted for zroc79.

My 16 year old son had j-pouch surgery in june of 2010 and had the take down 2 months after in august.  The surgery was the last resort.  we tried everthing from steroids to remicade infusion treatments. Nothing worked.  He was diagnosed with UC 8 months prior.  His conditon was very sever and was hospitalized many times needing blood transfusions and from complications such as pancreaticis.  It is now 3 months and he feels great.  He is active, going out with friends, getting involved again the way a teenager should.  He does however go to the bathroom about 6 to 8 times a day.  About 3 nights, he wakes up in the middle of the night to go.  It is always diarehea.  He uses diaper rash cream to prevent soreness.  Since the surgery he has had no accidents and the need for urgency is greatly deminished .  He is also off all medications except for one he takes to help with frequent bowel movements.  He is young which I think is an advantage.   As he gets older and the pouch expands he will be going less often.  The only major complication involving the pouch is pouchitis which is an inflamtion.  We were told this is easly cured with antibiotics.  I hope this helps you. I know everyone is different and surgery can be scary.  But in my son's case it was the choice and glad we did it.  Good luck

Derek;s mom

 Reply posted for zroc79.

I pray your surgery goes well tomorrow.  My son had his take down on Oct 28th and has not had 1 accident.  But a few could/should be expected, espeically in the beginning.  We had a very rough start (colectomy on July 8th, incision infected july 11th, abscess July 19th).  So Andrew's take down was delayed by about a month.  BUT he has done very well thus far after take down. Don't set your expectations too high....you'll do fine.

We sought treatment 6 hours away from home which can make it a bit trickier, but I so hope that you have a great rapport with your physician and staff.

 Reply posted for zroc79.

www.ucvlog.com

I think that will help you the most.

 Reply posted for zroc79.

Okay we have no j pouch but DONT PANIC!  A dear friend in the support group we go to has a 19 year old son who had the surgery and the reversal.  His is GREAT and his family now wishes they had done it long ago.  He was a UC patient who had never been able to achieve remission and for the first time in his life, he has no accidents, no issues, it is really and truly great.  I don't know every detail but I know he is completely medication free for the first time in his life....so I"m assuming no Immodium.  Try not to worry.

I'm sure someone with some actual experience will respond soon but I wanted to just offer a few words of encouragement. 

Claire's Mom