Debating perm ileostomy

I've never had cdiff, but I did have my pouch out and get a perm end ileo. Best decision of my life. Last night my kids made a "fenway park" in my son's bedroom (had tickets but too rainy to go to the real one) and my daughter kept feeding me cashews. No problem. Popcorn, no problem. General Gao's chicken with broccoli last night, no problem. No drugs (except Immodium at night and if I am going out where there might not be bathrooms for a while - like the first grade field trip to Paul Revere's house - left at 9am got back at 1:30 no bathroom access) and eat what I want. Never a moment of regret.

I had a 3-step procedure - end ileo, loop ileo, functioning j-pouch. I'd have to say that life with the end ileo (which is what you'd get) probably gave me more freedom than even a j-pouch. I've never had pouchitis (I thought I had it about a month ago but all symptoms stopped before I started taking antibiotics). I've never had C. diff but I agree with you that if you did have to deal with it, it would probably be easier.

Like Jill, I could eat everything with my ileo. Nothing ever caused a problem. Ever.

I know it's very scary to consider more surgery, but like Eric and Jill, you may find that you're in love with the new plumbing.

kathy

I am very sorry to hear you are still struggling with C-Dif.

You mentioned in your other post that you are participating in a clinical trial for fecal transplants and you asked about Cifid or something like that (never heard of it). Are you considering a perm ileo only if those options don't work out?

I am finally going to a perm ileo next week after having struggled with pouchitis off and on (mostly on) since I got my jpouch about 15 years ago. I found out a month ago - after I'd made the decision to have my pouch removed - that my diagnosis was officially changed to CD and also that I had picked up C-Dif. The Crohns diagnosis did cause me to pause and consider my surgery decision, but then I quickly concluded I would be very disappointed to not be able to have my surgery next week.

Can I tell you whether or not its time for you to switch? I don't think so. All I can say is that I knew I was ready and I pushed to make it happen. I was so tired of the drugs, lifestyle limitations, leaking, etc., that I knew the trade off of a major surgery was worth it to me. I decided that, even if the only thing to improve was more control over my bowels due to the bag, it would be enough reason to go ahead. Ideally, i will also be able to eliminate/reduce the drugs, as well. But that's just my thinking. There are no guarantees with IBD so the best we can do is to research, work with doctors we respect, and go forward.

I hope you are feeling better soon.

I lived with a miserable j-pouch for three years. I weighed 98 pounds and was in the bathroom constantly, pouchitis and butt burn. I now have a permanent ileostomy and it is the best decision I have made. I now have control of when I go to the bathroom and I now eat anything I want to eat. I am now healthy and gained 20 lbs.

I also have been thinking its time to throw in the j pouch towel. Have had mine 7.5 years and have had chronic pouchitis ever since. It is so great to hear stories of a good life after the pouch. I guess I worry about odor and wearing clothes with a permanent bag. It has been so long since I had one and I only had one for 10 weeks I don't really remember it, I do remember the puffiness. Good luck to you whichever way you decide to go!

Sounds like your situation is somewhat unique in that you have FAP, C diff and other issues. I was pretty dang sure an end ileo would solve my problems (J pouch) because I did well with a loop ileo. It was a pretty low risk gamble that has paid off, It really does not impact my life style much if any. Pretty hard to recomend it given the situations are different but logically as you note having the output go directly into an external pouch should make a difference. It seems some peoples bodies just never adjust to the J pouch or continent ostomy.

Omg this surgery is monday!!! I am now scared to death!!!! Should i cancel????????????

I am now so worried beyond believe I have been healthy for almost ten years. I have been able to do pretty much anything! Its me that i am having problems with having an ostomy. I hate the way it looks, cant wear the clothes i want at times, work- having to hide it been the pouch is full, leaking, smells( cause I know I can smell it) Just going places makes me nervous. Because of this, i do not like myself. This is the reason for the j-pouch

Please, Anyone who is reading or on here. I NEED ADVICE!!!!!!
PLEASE help me!!!!!!!!!!!!!!!!!!!

quote:

I am now so worried beyond believe I have been healthy for almost ten years. I have been able to do pretty much anything! Its me that i am having problems with having an ostomy. I hate the way it looks, cant wear the clothes i want at times, work- having to hide it been the pouch is full, leaking, smells( cause I know I can smell it) Just going places makes me nervous. Because of this, i do not like myself. This is the reason for the j-pouch

Sounds to me as if you should have had counseling and or a support group early on. I assume you have an end ileo? Most people do well with the J pouch a few of us dont, so the odds are in your favor, but I assume you reasearched the ups and downs of the suregery and the results, if not you should look into it further before going forward. You dont say why you had the ileostomy in the first place so it is hard to comment on if this is a good idea from a medical standpoint. From a psychological point of view it may be good.

kmj - I wear all the same clothes I used to with my j-pouch with my ileo. I've never been into really low rise pants, but I don't wear granny pants either. I'll be going out tonight in skinny jeans. The key is to remember that no one is looking at your belly. Seriously, do you look at people's stomachs when walking the mall? Trust me, no one is looking at yours either unless you have fabulous abs and they are exposed

If I'm going out in a really fitted outfit, I use Immodium to slow the output and I visit the bathroom a little more regularly, but frankly I can't be bothered most of the time. I just get on with what I'm doing.

I swim all the time. I'll be going to Disney World in two weeks and plan to go on all the water slides at our hotel, swim in the pool a lot, and keep up with everyone else. No problem.

If anyone has questions about managing an ostomy, I've had mine for 13 years and it is just part of me now...