New around here with a lot of questions...

Hi and welcome to the board!
A good website to visit would be United Ostomy Association of America...they have lots of good starting info for anyone.

Yes, most of us either have an ostomy or a j-pouch (which is where they remove your colon, you usually have a "bag" or ostomy for a few months while you heal, and then they reattach your small intestine to your rectum, creating a "pouch".)

I have an ostomy because of Crohn's colitis (still 15% chance it was UC). I chose to make it permanent. I never regret it. When you have a permanent ostomy, they usually sew up your rectum. They did that for me. Even if they don't, you don't poop normally anymore. It comes into the "bag".

I was taking so much pain medication before my surgery. I take none now. I rarely even take tylenol. I don't take any maintenance drugs for my Crohn's (or UC, whichever it was/is). Life is so much better, it's not even comparable. Most of the time I forget I have the pouch. The only thing I can't do with the ostomy is wear a bikini. You can swim, work out, have sex, take a shower, anything. This is the first time in the last 10 years I've come close to feeling "normal." I don't worry about what to eat and when, I don't worry about finding a bathroom, and I don't worry about my illness holding me back. I just live my life.

Please let us know if there are any other questions we can answer for you!

Welcome! It's great that you're thinking ahead and getting information.

Some people here have j pouches and some have bags. I have a bag, as they thought I most likely had crohn's going into surgery, and I also was fine with it. The operation was totally worth it, even though I had a complication that required a further surgery. The urgency associated with colitis goes away --I don't have to always know where the bathroom is anymore, I can wait a half hour or so before I need to empty when I feel like it's "time," I put on weight, am not fatigued like I was, look better, have more energy, etc. Pain wasn't a main symptom for me, but a lot of folks on this list have said that the pain went away immediately after the surgery.

I would ask how normal things are for you in the romantic area when you're sick w/UC now. Being healthy again really helps. The bag can be hidden with a wrap or various other devices, and people do fine.

That said, there are other drugs you haven't tried that you might want to -- 6MP or Imuran, TNF blockers like remicade, etc .... some people do decide at your stage to have surgery, some of us tried all these things and they didn't work (me for ex), but others have good success w/the drugs. There are alternative things like fecal transplants and specific carbohydrate diet that work for some people -- but you probably see all those things on the UC list.

If the j pouch surgery doesn't work you can get a bag, but my sense is that it usually works, over 90% of the time. It's really important that you get a very skilled, experienced surgeon as it's a tricky surgery. There's a site http://www.j-pouch.org/ where you can get a lot more info and ask more questions about the j pouch. They have a lot of info about the surgery on that site.

Here is a guide w/info about ileostomies from the united ostomy association http://www.j-pouch.org/Whatis.html#anchor306996

Feel free to ask more questions.... hope things start getting better for you; it's an awful disease.

jpouch surgery is really difficult, but if you have a good surgeon it shouldnt be a problem. Most of the people who have trouble with their pouches find out they actually have crohns, there is sometimes a misdiagnosis.

I have a bag, i chose it because i didnt want to ever go to the bathroom the regular way again! My son was not quite 2 at the time i had surgery, and i knew i couldnt do two surgeries with him, and go through the first couple of weeks after the jpouch is hooked up, where you go a lot, but its not painful and it goes away, its just until the pouch gets used to it. i don't have a lot of info on that since i don't have a jpouch. I also am the kind of person who worries about everything, and i knew if i got a jpouch i would constantly be worried that i would be the small percentage of people who has trouble.
My life is very normal, much more so than with UC. I don't mean this to sound bad, but how normal is your life right now? I don't take lots of meds, i don't run for bathrooms, i don't miss out on foods and parties. I go to school and help with my kid, i go to the store, i go to clubs, i go out to dinner with friends. Life is the way it was before UC, and actually a little better cause i appreciate it more. as for sex, well with UC i never wanted to, i felt horrible, i was fat from pred, and always worrying about havign to go to the bathroom. now that's sexy! :D Now i just wear a band around my bag and it holds it up, my husband doesnt care at all, he's really happy that he gets to have sex now, lol. and honestly, men dont care about much during sex except for one thing, we all know that!
As for going to the bathroom, for me with a bag, i don't know it, it just comes out all the time. occasionally i can feel it. but i empty my bag like 4-6 times a day, usually when i pee. with jpouches most of them say they empty when they pee too. there is no rushing though, and no pain, thats the best part!
most of my pain went away right away, i still have some joint problems from the pred, but those are going away slowly. the short pain from surgery is soooo worth the results!
noone with UC should be miserable when their is surgery out there. if you can find a med that isn't really dangerous then thats great, for me i was tired of trying meds, i wanted to beat UC and get my life back!
If you have more things you want to try, certaintly try them, but it's very smart of you to go ahead and educate yourself on surgery, so you wont be blindsided or terriffied if it comes to it!
good luck!

I have been just where you are Gautegirl! After 17 years of suffering, 20 or more pills a day, years of prednisone, achy joints, 6mp, remicade and the constant pain, I finally had to go where I had never wanted to! When it got so bad that I was scared to leave the house because I might have an accident, I knew I had to do something. I was reclusive, my kids and husband were suffering from me never feeling good, and I was no longer living the life that I wanted to. When I finally made up my mind, I was so relieved and couldn't wait to have surgery and get rid of my rotten gut.

I decided before the surgery that I was not going to have a J pouch. I never again wanted to go poo! I had done that enough for a lifetime, and I didn't want to take a chance that maybe the pouch wouldn't work right, or I still wouldn't have good control. That was my biggest issue...I wanted control! I am still getting used to the pouches and all they involve, but I wouldn't go back for anything!

As far as the romantic aspect, well, I am only 4 weeks out of surgery, so haven't gone down that road yet, but it hasn't slowed my husband down from trying! lol I think it is more of a mental thing for me rather than a cosmetic thing. Pretty sure it isn't going to hinder anything in that department!

The operation for me was TOTALLY WORTH IT! I no longer have ANY pain related to my UC. I still am recovering from the surgery and have pain from that, but it is so much more tolerable than the pain from my UC. I eat anything I want without worrying about the consequences...I no longer feel like a "salad shooter". I feel that I am completely cured, and I have a new friend (Stella the Stoma) that needs lots of attention, and I am glad to give it to her.

Good luck with your decision making. And when you are ready to make a decision, you will know it. There won't be any question in your mind. I was at such peace when I finally decided to go through with it, I immediately felt better about my life. It's a big decision, so make sure you know as much as you can and be sure to get all your questions answered. Best of Luck!