I have UC. . Surgeons say Surgery is likely. . I don't want a permanent bag. .

Hi, I have been doing a tone of reading up on this surgery to "fix" my UC. Ileostomy...or Colostomy, I am having a bit of trouble separating the two.
But my biggest concern is, will the bag be permanent? Does the removal of the colon and rectum mean the bag will be permanent? I really want to be comfortable in making this decision before I make it, because there is no getting back your original parts once they are taken away. PLEASE HELP. ( 25 year male who just wants to live and enjoy life again )

Anastasios, have you seen the ostomy board? That's all people who have had surgery (permanent ileostomy or j pouch etc) or who are wondering about it. You can get a lot of answers there to your questions; people are very helpful and won't try to coerce you into one option or another.

I had a permanent ileostomy, because the docs thought I had Crohn's going into the surgery (now it looks more like I have UC, although they still aren't sure). I will have the bag for the rest of my life (unless some other surgery comes along), and I am fine with it. I feel better than I have in years. I can eat things I couldn't eat before, I have more energy .... life is just so much better. For me, the bag is no big deal compared to how sick I was for years.

A lot of people w/UC can have the j pouch though, and many people do very well with it. The j pouch takes two or three surgeries, depending on how healthy you are. After the first one, you'd have a temporary ostomy, until they reconnect it in the "takedown surgery" (sometimes they make the pouch in the first surgery, sometimes that's a separate surgery).

I do encourage you to go over to the ostomy board to learn more. It's a very hard decision, and only you can make it for yourself.

I have a permanent bag, there is no urgency and alochol is no problem! Ask my hangver from Saturday and Sunday lol.
You can eatwhatever do whatever and noone will ever know!
Best thing though, the uc is gone, you beat it and take your life back

Anastasios10,
My fequency averages about 4-6x a day but it can vary from that...sometimes less, sometimes more. There is no urgency at all. Basically when I go pee (I'm a girl so I'm already sitting) I empty whatever is in there just out of convenience. But I can hold it as long as I need to. I was just on a beach vacation and spent the entire day on the beach and only had to go once. (had to pee anyway!) I can eat whatever I want...nothing is off limits. That includes alcoholic drinks although I am not much of a drinker. Prior to surgery I was sick as a dog for 6 years straight...I could never get in remission so I was going to the bathroom 15-20x a day. I'm suprised I am still here sometimes after all that! Let me know if you have any other questions, I would be happy to answer them if I can.

OK going to the bathroom with a J pouch will never be like having a healthy colon. It's been so long since I had a healthy colon I don't remember how many times a day I went. Problably once maybe twice like most normal coloned people do. My husband has a healthy colon and he goes to the bathroom 3-4x a day! Goes to show we are all different. 4-6x a day now is nothing if you have severe UC like I did. And you are not sick anymore and no urgency so the number really doesn't matter. It's kind of hard to explain it...I wondered all this stuff too to prior to surgery. My stools are semi-formed (like toothpaste consistancy). You go to the bathroom the same way you do now...just sit and go (yes it goes thru your rectum). You just hold it when you have to just like in the old pre UC days...don't know how else to explain it! Hope this helps :)

I would never say I did this surgery for nothing. If I kept going like I was I would have ended up dead waiting for a cure. And I am not exagerating. My colon was on the verge of perforating. If you have mild or moderate UC then surgery isn't really necessary. I have a friend with UC that controls his by taking a few Asocol a day. Mine was severe and there are a lot of people out there that have it severe as well...surgery is a blessing for us. And I don't think a cure is anywhere in the near future.

Even if a cure was posted tomorrow; I am grateful for surgery. I've been living the past 10 years with a cure and that is a lot of life I have not had to give up to UC.

Sue

I would just like to say THANK YOU to suebear and ByeByeUC for your posts and comments. I have been wrestling with this decision for weeks now. Debating if I should go through with the surgery or not. A lot of the questions I had, you both gave very good and informative insight :). Thank you for that. I am still debating the decision for surgery, although if or when I go through with it I will feel much more confident in my decision to go through with the process.
BUT. . there's one more question I have lol.
When the colon is removed, the J-Pouch is inserted, and the rectum lining is removed, how do you feel internally? Do you feel like your missing something? What does it feel like afterwards? If I go to the gym and start doing some intense sit-ups will things feel different in my stomach?

First, the entire rectum is removed. The jpouch basically is a false rectum.

The feeling post surgery was amazing for me. UC, always made me feel as if I had a bowling ball in my abdomen. I didn't really realize that UC caused it but once the colon was removed I felt nothing and thought that normal, non-UC people probably feel this way all the time. It brought tears to my eyes as I knew at that point I had made the right decision and that I would be fine. No, you shouldn't feel different in the gym. I work out and don't notice the absence of my colon in that way.

Thanks imagardner2. The reason I stick around is to provide information from the post surgery view and experience. I wished that when I had to make the decision that this resource would have been available.

Sue

Before my surgery I thought about how would I feel if IBD were cured in a year .... and my answer came quickly and honestly, "I'd be thrilled, but I can't wait that long; I'm too sick." We live in the time we live in. I feel like I tried, my doctors tried, but we just ran out of good options....

Somedude, I also thought about the flip side -- for most of history, and in many places in the world today, I would have been dead already from my symptoms. People die of diarrhea..... of fevers, etc. I sometimes think about what if I lived before there was plastic to make ostomy bags etc....

So, I am just grateful that the surgery exists and not only can keep me from being dead, but also give me a much higher quality of life than before surgery.

This framework has really helped me cope..... I know that for years when I thought about surgery I feared having the last colectomy..... but when things got bad enough, that just wasn't how I looked at it anymore....

Another thing that helped was seeing a picture of my colon after surgery. It was so mangled and scarred that it was just really difficult to believe that drugs or diet or supplements or whatever could have made it better at that point.

The first couple of weeks I kept wondering where all the stuff that was left would go now that my colon was gone, and I kept expecting my stomach to like slosh around, lol. But that never happened. My stomach does feel different now its not in horrblescreaming pain anymore. As for the gym, I don't do situps I do the insanity cardio abs but I don't think my stomach feelsdifferent than it would otherwise

I've been wondering something, and leeching off someone else's topic because I'm nowhere near surgery to start my own. But it's always in the back of my head --

It seems like if you go for surgery, you're "expected" to go for a J-pouch if it's an option, to mimic normal functioning I guess. I know I'd have to do more research if the time came, but I've pretty much decided if I ever hit the surgery point I'm done, don't want to poop ever again, and just want the bag.

Is this weird? Does anyone choose that option?

Hoshi if you go to the ostomy board, there are folks there who were good candidates for j pouches and who chose to have the ileo and permanent bag instead. Some people wanted a more predictable outcome, fewer surgeries, no cancer risk, no urgency risk etc.

Some surgeons are very responsive and do what the patient wants, while some others see it as a failure to not go for the j pouch.

Some people have j pouches that don't work out, and that can be a lot like having the disease .... I think most people are happy w/them, but some don't want to risk it....

I just wanted to be done, and I'm fine w/having the bag.