what is j-pouch surgery?

From what I understand, the first part they remove the colon and construct the j pouch out of the end of the small intestine, while a little bit further up the small intestine they create a loop ostomy which allows the jpouch to heal and you have to wear the bag for a month and a half or so. Afterward they reconnect the small intestine.

this guy on youtube has had the j pouch surgery: http://www.youtube.com/user/UCVlog
He goes into a lot of detail about the bag and the j pouch. And after watching some of the videos I don't feel afraid of having surgery.

Additional questions:

Does anyone know about pregnancy after having the surgery?
How long were you in the hosptial each time?
How long did you have to wear the colonoscopy bag?
Does the surgery have any bearing on life expectancy?

Hmm.. I think that's it for now - Thanks so much for the input!!!

I understand how surgery can improve the quality of life as far as the direct symptoms of IBD such as frequent Bms, urgency, etc. But do the indirect complications also improve, such as arthritis affecting knees, ankles, wrists, and spine? Do skin lesions continue, liver disease, and inflammatory eye manifestations? During a flare the whites of my eyes are almost all red. Will surgery help?

Where does the inflammation that has been relentlessly attacking the bowel go when the bowel is no longer there? Does the inflammation end or is it redirected to new targets of opportunity in other parts of the body. Or does surgery end all these complications also?

 How long did it take for your body to learn how to use the small intestine as a rectum? I have read that it is a difficult transition.

My son had the three step procedure.

He was very ill and had been on prednisone and remicade. The first step was to take out the colon and give his body time to get healthy again before the pouch was built. During this time he had an end ileostomy which, for him, was very easy to look after. The magical part was that within a few days of having his colon removed you could see how much better he was. Within a month he had more energy than he could remember and all blood tests were coming back NORMAL. Partially due to the fact that he was so ill going into this surgery his hospital stay was 19 days. He also had an ileus after surgery which happens when the small intestine goes "on strike" and refused to work. The cure is simply bowel rest but this adds to the length of hospital stay.

Four months later he had the pouch built. He was then given a loop ileostomy. A lot of people do fine with this but he was not so lucky. He ended up having problems with obstructions just behind the stoma. This resulted in another extended hospital stay.

Two months later, which is 2.5 weeks ago, he had this ileostomy site closed and started to use his pouch. He is now doing great. He is having BMs about every 2.5 hours but only gets up one time per night. When he has the "urge" he can hold it and he has complete control. We fully expect this frequency to diminish over the next few months. He is doing so well that last evening he was out skate boarding (he is 18) and came home so excited because he felt so good. It has been over two years since he was able to do this.

You need to know that a lot of people sail through all these surgeries but there is also quite a high risk of some sort of complication. However, almost all can be dealt with. For us, surgery was the absolute correct answer and even though we had more than our share of complications my son would go through it again in a heart beat.

As to the question of pregnancy....my understanding is that fertility rates do fall somewhat and that some doctors feel that delivery should be by caesarean. But I understand that that thought is possibly changing.

I keep telling people that the main thing is to find the best colorectal surgeon that you can. This is complicated surgery and you want someone who has done a ton of them.

If you have any other questions feel free to ask,

Cathy (and Dillon)

Also...we were told that this surgery had NO bearing on life expectancy (aside from the general concerns of any surgery). I believe it is much worse to be on heavy hitting drugs for decades and decades.

Supa there is no question that is OT. You do have to have the bag attached all the time since the stoma is outputting, on and off, continuously. To empty the bag, it opens at the bottom (either with velcro or a clip) and you let the poop slide out into the toilet. You do this about 6 times a day. Depending on the system that you use the bag may need to be changed every few days (which is very quick and easy) and the flange (the "anchor" that sticks to your skin) about every week. Changing the flange can take a few minutes since you have to get the old one off and clean the skin very well. Sometimes while you are doing this the stoma can have some output. This just means that you have to clean the area again before the new flange goes on. Most people find a time of the day when the stoma is much less active and change their flange then. My son had no problems at all. He changed his first thing in the morning. Before you leave the hospital the nurses will teach you very well how to deal with all this and usually when you go home, homecare will come by when needed to help with the changes. You get used to it very quickly.

i was in the hospital five days after step 1 and returned to work after 3 1/2 weeks. i'm a consultant and do both office work and typically light field work, as well as a lot of driving.

i had the temporary ileostomy for two months (9 weeks). that was enough for me as i think i was beginning to become really dehydrated and it's tough to prevent that with the loop ileostomy, in which the stool is frequently very watery.

in the hospital four days after step 2 and returned to work after 2 weeks.

i'm still learning about my j-pouch each and every day of course but i'm sleeping well lately and can tolerate a lot of food already including salads, pizza, fast food, beer, and wine.

My son has had his J pouch working for about 2.5 weeks. He is having a BM about every 2.5 hours during the day. He gets up usually one time during the night. We were told to expect about 10-12 BM a day at the beginning and this should decrease to about 5-6 over the next few months. Things level out after about one year. Right now the consistency is like a paste but if he has a lot of sugar is gets runnier and then the dreaded "butt burn" sets in. If he stays away from large amounts of sugar he has no issues. He is already able to hold it when he gets the urge to go and has complete control. These BMs are quick and easy...no pain, no urgency, nothing like the terrible days of UC. The first night in the hospital he had a "leak" while he was sleeping but nothing since. Our docs told him never to expect what you would think of as a normal formed BM but I hear from some people here that that is what they have. I do not think that is the "norm". Very often, after the docs see what your body is naturally going to do they add in things like metamucil or an anti diarrheal medicine to slow things down a bit.

Hope this helps. I know at the the beginning of our journey I was aching for information.

Cathy

I agree..there are a lot of people out there that do not have to go the surgery route. It is up to you and your doctors to decide if the meds are not working well enough any longer or if you do not want to put up with the drugs any longer. However, you need to be aware that about 35 % of UCers will at some point need surgery and you should be fully informed ahead of time. That being said...65% live their lives without surgery.

well im sure for some people the jpouch does last forever, its still your own body tissue, its not like with a knee replacement or something where they use something that can disengreate or wear out over time.

Thank you so much for the information above I too have just recently had my first remicade infusion...the next step may be surgery....I have ignored the whole surgery subject until now ...so thank you again