JPouch or permanent Illeostomy?

Access to bathroom facilities wont be the problem having a j pouch. Where theres a will, theres a way. You carry the moist towlettes with you all the time, a can get by. The problem is going to be if your pouch works like it should. If the pouch is a poor functioning one, then your days working on the railroad are probably over, at least until it is removed. The pouch is convenient if it works well, but can ruin your life if it doesn't. you have to decide if the risk is worth taking a chance on it.

thankyou for replying back, I really appreciate it as I am going through hell trying to decide if I should go ahead with the j-pouch. I have to decide by next week and I don't know what to do. I've been reading everything I can on the pros and cons. Do you have a j-pouch? Thanks again, Rick

I think if you have a well functioning jpouch you will have no problems,, except generally jpouchers use the bathroom far more frequently than coloned individuals. However, if your jpouch falls in the failure category.. then no way would you be able to work at that job, or probably any other job. I had my failed jpouch for 6 months and could barely leave my house. I had to stop eating in order to leave the house. Then I just kept losing weight.

Rick, remember though.. on this forum.. most likely the people you see are people that have problems. So ask your doctors honestly about failure percentages. Some of us have to be bestowed the privilege of making the failure percentage. Also ask your doc specifically what constitues success or not. Are you ok with taking antibiotics the rest of life if you develop antibiotic dependant pouchitis?

Also, as for your ileostomy right now, have you worked with stoma nurses to see if they can help you keep things on longer? There are so many options and gear out there, that I would think there would be some sytem that would work better for you.

It really stinks that you have to make your own choices so keep doing your research and just fully believe that whatever choice you make is the right one going forward. best of luck

Rick, yes i have a j pouch that varies anywhere from just ok to a living hell. My biggest frustration is that even though i have been able to tolerate the pouch for 22 years now, i am unemployable in many lines of work i would like to do. Plus the fact i cannot get a good night sleep with a j pouch leaves me exhausted. To be honest, the last time i had a good nights sleep was 22 years ago when i had my ileostomy. Even on my best days which are pretty good pouch wise, i have never felt as good as i did with an ileostomy. I would be very hesitant to get a j pouch in your line of work. But of course i am biased against it due to my experience. Someone who has great luck with a pouch will tell you it is the greatest thing since sliced bread.

People probably get tired of me being negative on the j pouch, but it is always in my mind that no one should ever have to go thru the suffering i have been thru with a j pouch. The dr told me how all the problems were rare, and yet i seemed to get them all. And reading the forums suggests problems are much more common than they want to admit. It breaks my heart when people who had great hopes for the pouch come onto these forums with heartbreaking tales of sickness and misery. If you were in a medical class where the professor was bragging up a great surgery where afterthe colon is removed, they store feces in your small intestine, the first thing you would think is that that doesnt sound like a good idea. That bodily waste sitting in your small intestine could cause irritation, diarrhea, plus allow all sorts of nasty toxins to be absorbed into the body. Well, that is what happens when you get pouchitis, and all the various ailments that can go along with it. I had arthritis one time caused by pouchitis, that was so bad i could not even get out of bed it was so painful. No one ever told me something like that was possible due to pouch problems. I wish forums like this was available when i was deciding about the pouch, because i know i never would have gone for it, knowing the potential problems, and wanting to be employed in physically demanding jobs.

if i had 1-2 years (20 years too long!) with a poor or unsatisfactory j-pouch, i would go back to an ostomy. loved mine. even if they just leave in the pouch and then give me an ostomy for a smaller operation, that would be better than living with a bad connected pouch. so i will give my new j-pouch 12-18 months to settle down, and if not, no problem for me to request back my ostomy. i hate surgery, hospitals, and always get complications, but end result is mental and physical freedom, then it's worth it in my opinion.

I LOVE my pouch and would not go back to the ileostomy unless I had no choice. I have chronic pouchitis which is managed nicely with Cipro. I empty anywhere from 6 to 10 times a day, most of that in the 12 hours from 4 PM to 4 AM. I am a teacher who cannot leave her room for hours on end and this has never interfered with my job. It has, however, been quite a challenge at times. There are professional football players, divers, actors, teachers, pilots... with J-Pouches. Most people do well with them.

Find the best doc you can. Ask how many pouches they have done. Be careful of braggers. I think UC Davis has a good program.

This is tough surgery and you need to plan for a year to fully recover, but it is doable. If your pouch is a troublemaker, you can always go back to the ileostomy.

Just a bit of advice, I suspect Mark Gregory is a guy who has been banned from this site many times. He keeps coming back under new names. I try to stay out of the drama that builds up around his posts, but I don't want you to attach too much to his negative attitude. I believe he has a right to his opinion, but you have a right to know he's on the far end of the spectrum as far as having good coping skills goes.

Good luck in whatever you do.

If your main concern is being able to continue with your existing highly physical job I think the ileostomy is your best bet. If there are other important considerations then perhaps the J pouch would be fine. What people say is that there is an adjustment period of 3 months to a year or more for the pouch (true), what they dont say is there is an adjustment period of the same duration for the person adjusting to life with the pouch. In other words on average many people (not all but most) modify their life styles to make the pouch work for them. This can be very minor (not eating certain things, buying a bidet, using butt cream) or it can be more significant(being on permanent antibiotics for pouchitis or narcotic bowel slowers or just not doing certain activities). Between the pouch adapting and the person adapting most people are satisfied with the surgery, some just tough it out and some like me go back to an ileostomy. The one thing I would emphasize is do not fall for the "try it you can always go to an ileostomy later". This involves some serious extra surgery(s). So use your best judgement make your choice and dont look back. Good luck