I'm new to this site, but if anyone has questions, I'd be happy to answer if I can!

NP,
Thanks for being here...how has his life been for the last 13 years? Has he had to deal with pouchitis, how about any other related complications...hopefully it's been a road with not too many bumps

Charles had pouchitis a few times in the beginning and he had a blockage once. It has been probably 10 years since that happened. However, the major problem he has had is anemia. Three years after the final surgery, his blood count dropped to 4.6, he received 4 units of blood, then about 3 years ago, it once again dropped to 6.2 and he received 3 units. He had some scopes done and he had "ulcers" in the stomach and at the ilieum. They put him on Pentassa which my son and a friend of ours takes for Chrohn's. He has since stopped taking it and now is anemic again, but his blood count is 10, so no blood is needed. He is going in for scopes again. Otherwise, Charles has done extremely well, he has learned how to control a lot of things with diet. One of the nurses who taught us about his ostomy, also, said that the same diet for it was going to be useful for the J-Pouch. He only has about 5 movements a day, and a lot of that depends on diet. Charles only eats chicken, no red meat (I am a vegan). The only thing he has found he cannot it are mushrooms, and he loves them. Otherwise, he eats all fruits and vegetables, legumes, etc. We also eat food grade Chinese herbs through Sunrider.

my husband has an ileostomy and would like to go for a j-pouch.he is 56 and just had his stoma in aug.would you suggest he go for j-pouch?

I would recommend to anyone to "go for it"! It's a matter of learning about your body and everyone is different. I love corn,nuts and mushrooms and I learned I have to sometimes not eat them or eat in moderation. I eat yogurt everyday and take a spirulina supplement for iron. I have other upper stomach problems and have to watch my iron count because of bleeding that is not related to the j-pouch. Listen to your body and remember that when your J-pouch is full it will make noise like your stomach is growling and you're really hungry! You will even out as the years go by, but you will probably have more than one bowel movement a day. Use Calmoseptine to keep from having problems and keep exceptionally clean! I would never go back to the bag, even on my worst days!

hello there NanaPat... my name is Sue & my sister Anne has been dealing with UC for most of her adult life; she is 54, 1 year older than I. Her doctors have said that the time has come for surgery. So we are trying to decide on either one surgery (Illeostomy) or the J-pouch...

Now, I must tell you, Anne was born with Turner's Syndrome, a genetic disorder. While she is not mentally retarded in the way that Downs are, she is, so to speak, simple-minded; she has lived on her own her whole life however. Turner's women have great difficulty comprehending the written word. Hence my total interest in all things related to these surgeries. I am somewhat new to the internet & computering, but Yowza, there is a wealth of information to be found here.

Why I thank god for all that there is available... I am most interested in talking to people who have gone through this already. How did you decide on which surgery to go for? I read the last post - "I would never go back to the bag, even on my worst days!" --- So do you think that an older woman who is slightly mentally diminished could manage all that is involved with the 3 j-pouch surgeries (the aftermaths & proper maintenance)?

Just asking another soul --- I will be consulting all of her doctors as soon as I get myself informed enough to even ask questions; this is so new to me. I have learned a lot already today. Her surgery is scheduled for April 5th this year. I can arrange it so that I can be there before, during & after the surgery --- & for 3 weeks after too --- to help her recover. In the meantime we are talking everyday over the phone & trying to figure this all out.

Thank you NanaPat for offering answers to questions folks have.

cheery-bye,
Susan Poche' (aka q-bird on this forum here)
susanp@boreal.org

I asked my wife what she thought, because she has a good understanding of people with problems as your sister has. Hi, I'm Nanapat. The bag is horrible, the three months Charles had it before the J-pouch surgery was a nightmare. He only had 2 surgeries. To care for the bag is a full-time job and it has to be done correctly and more than once a day sometimes. I had to go home from work to help Charles several times. The second surgery is not that complicated or as hard on the patient. Dealing with the bowel movements and caring for the skin are the most important thing. Diet will always be an issue, with the bag or a J-pouch. The same foods that stop up a bag will cause blockage in the pouch. I would think your sister might need full -time help with a bag. I hope this helped and if you have any other questions, don't hesitate!

Q-bird,

As a nurse, I've dealt with all sorts of people. Personally, for someone who is mentally challenged, dealing with a j-pouch would be easier than dealing with an ileostomy on an ongoing basis. She likely would have the ostomy experience at least short term, even if she opted for the j-pouch, so you guys would learn how she handled it. But, with the ostomy, there is the constant ordering of supplies and having to pay attention to detail (or you wind up with leaks). With the j-pouch, there is the challenge of dealing with urgency and diarrhea while the pouch adapts, but at least that is something she should be familiar with. Small children get this surgery and adjust well, so I would think your sister would be fine.

Just my two cents.

Jan