My story is similar. I had my j pouch formed in 1991 and I am now nearly 65 years old. I do recall it was tough at first getting everything to work properly and I still have several BM's a day and sometimes at night but you do adapt to this. I take meds regularly to absorb water and thicken bowel contents but these have been fine. Hydration is important so I make sure I drink at least 2 litres of water a day but this does impact the bladder. Also when my pouch is full it impacts pressure on my bladder but this is manageable. I am pleased with my pouch as an alternative to a permanent ileostomy.

I did have 2 fistula's form, some 10 years post surgery, one minor to the vagina and a year later another more complex one which presented with an abscess in my buttock. I was given 2 options to fix this, pouch removal and ileostomy formation which was simpler surgery or removal and complete revamp of my pouch and another 2 stage procedure to fix which was big surgery again. I was attached to my pouch and chose the latter and have never looked back. I will not pretend all is easy living with my pouch and some adjustments have to be made (mainly around noise on going to the bathroom and a more distinctive odour and an even increased frequency of BM's if eating certain food stuffs) but  these can be descretely managed (using public facilities when someone is using the hand dryer and carrying a perfume spray and managing diet when necessary). Oh by the way sudacreme is great at limiting soreness when required. I do feel I have a good quality of life. Good luck and keep positive.

Barbara from UK

Hello everyone, its been a long time posting on this site. Its true that once most of the problems are gone the less you return to this site.

I received my pouch the year I turned 50 and I'm now 70. After the adjusting period, which can be very trying, life does get very manageable and easy. When I was sick I went from 240 pounds to 140 in a very short time; right now I'm trying to shed 65 pounds to get back to 200, so life does almost back to normal. I eat almost everything, I drink wine and scotch, I take only BP medication, the only pouch problems in 20 years were self inflicted blockages brought on by popcorn cheese combinations and nuts. Right now I do have hernia problems from gaining all that weight and the scar tissue breaking down but as soon as I lose another  30 pounds they are going to insert a mesh down the whole belly.

I just wanted to stop by this site and say life does get a lot better after all the pain and adjusting times we all have to go through. My wife and I are now retired and RV live all winter in Florida and up north with the kids all summer. We hit the gym 3 days a week and walk 2/3 miles on our off days. The only must that I have to do everyday to keep the pouch happy is take metamucil faithfully, I still have 5 / 7 bowel movements a day but you become unaware of it. 

Live life, have fun, love everyone, hate takes to much energy.

Bob B.


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sandyk posted:
Hey Everyone,

I am new to this site, and just had my closure (take down) surgery a little over two weeks ago. After perusing this site, I have noticed that most stories here are focused on the various complications with the jpouch.

In order to balance out what I have read so far, I was hoping that, if any of you out there would be so inclined, perhaps you could recount some success stories? I would LOVE to hear from people who have had few problems with the pouch. I appreciate that the first six months or so are always a bit tough while the new pouch adjusts to its job, but are there any people out there who have sailed through this procedure? I am guessing if there are people who have, they may not feel the need to join a support group site,.. but perhaps there are some out there. One can hope.

Thank you!!

I had my surgery in 2001 in Rochester, MN Mayo.  At the time I was 22 years old and living with UC, and after 3 years my GI found cancerous polyps.  I had been on EVERY UC meds and had been on the highest amount of steroids possible for 1 year, this sunk my immune system and did nothing for my UC.  I was bleeding profusely and my hemoglobin was rarely above 8 and received 2 different transfusions.  Needless to say my life  was hell

The surgery itself as you know was scary.  I spent almost a month in the hospital because I came down with a fever.  When I left the hospital I was 22 years old and a colostomy bag.  I spent the next 3 months trying to adjust to life and eventually found the bag to be apart of me.  When I went back to Mayo for my letdown surgery, things went better.  The pain and recovery seemed to be a snap.  Weirdly though i spent a week in tears because I 'missed' my colostomy bag.  The doctors said it was the same loss that an amputee has.  

Since my surgery 16 years ago, I spent many healthy years.  I had 2 successful pregnancies.  And am able to enjoy a normal life, eating and drinking and living life to the fullest.  Back in 2012, i developed a hernia on my scar. And than life changed again.  I spent the next 4 years in pain due to scar tissue (also related to C-sections).  I was relived of the pain on a trip to Mayo last year.  It was pretty much my last home.  I had a 10 minute procedure and 4 years of chronic abdominal pain was gone! However while I was there I was there they ran the normal test (scans, scopes, etc.) and discovered a lot was going on.  I had previous battles with pouchitis, which were always treated with antibiotics, however after numerous upper scopes, and lower scopes, ct scans etc. The doctor now has diagnosed me with Crones.  

I am living now with a j-pouch and crohns.  I am now 39 and trying to overcome.  Do I regret the surgery....NO, it saved my life.  My scars make me who I am and I will continue to make progress because I know that if I can make it through that surgery, nothing can stop me!!!

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