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Hey. I am 22 years old and have had Colitis since I was 8.
I was first diagnosed with UC and then with Crohn's. Now I have been changed to IBDU (unclassified). I am having a terrible time, I have tried just about every drug under the sun but nothing has really worked. I am currently taking Humira but am not finding it to be especially effective.
I have been seriously considering a Colostomy as a potential option, but is it worth it??
My main concerns are: being comfortable with my own body and comfortable with others seeing my body. Also, I was wondering what the surgery does for the pain. Obviously the pain of going to the washroom would be avoided, but what about the general abdominal pain? Your intestines are still functional, so what does it do for that? If I am still going to be experiencing as much pain then I guess I figure that there is no point in getting the surgery....
Any insight would be AMAZING!! I don't know what to do anymore....

 Reply posted for JCarnwell.

Hey JCranwell...I'm 22 years old also and was diagnosed with Crohn's Disease at age 12.  Last week I ended up in the hospital with an obstruction.  Friday I had surgery and they removed 10 inches.  Although I didn't have an illeostomy etc. surgery was not on my list of things to do.  I've been home now for two days and I have to tell you despite the pain of the actual surgery I already feel better.  There is a certain comfort that comes from not worrying about trips to the bathroom or if I'll be able to spend the afternoon with family without being in severe abdominal pain.  Whatever you choose to do don't let the physical part of it get you down.  As a 22 year old girl who lives in Florida (home of the bikini) I understand what its like to worry about what people are going to see.  The only thing I can tell you is that after years of feeling awful these few days of feeling "decent" have been great and absolutely worth my scar.  Good luck

 Reply posted for JCarnwell.

Major surgery like this is always a difficult decision.  What made the decision easier for me was a wonderful doctor who looked me straight in the eyes and said, "You have forgotten what it is like to feel well."  How right she was!  Since my proctocolectomy with J-pouch I sincerely remember what it is like to feel well.....every single day!  Best wishes!

 Reply posted for JCarnwell.

I've had crohn's for 15-16 years.  I did everything to put off surgery for years.  I took every medicine I could and even participated in clinical trials.  I used Humira before it was FDA approved.  For me, eventually everything stops working at some point.  So I finally went through with having a colostomy two years ago.  I won't lie.  Its not an easy adjustment to make.  I think I would have accepted it sooner, if it weren't for a lot of problems that developed afterwards.  My GI recomended that I should have had my entire colon removed, but I wanted to keep as much as possible.  (I don't know why I thought that.  I guess I wanted to keep as much of me in tact as possible.)  After two years with the colostomy, Ijust had an ileostomy.  So far, so good. 

In the end, I have to say it is worth it.  Not having to constantly rush to the bathroom is a huge releif.  I can't say I'm pain free, but it's a lot less pain and discomfort then before.  And ideally you end up not having to take all of those awful medications that mess up your system. So in the end, it is worth it. 

As far as adjusting to it socially, its up to you as to how much you tell people.  Those close to you probably know something's wrong anyway and that you aren't feeling well.  So if having the surgery and wearing an appliance brings you releif, that's grreat.  No one is going to judge you for that.  If you chose to tell them, they'll be glad that you found some releif. 

Is the surgery worth it?I had UC and had a colectomy in late 1999 and then a j-pouch surgery in 2000. In my case, there was no choice but surgery, my colon perforated. but I will tell you both this--I went from a life of *** to immediate healing and recovery thanks to surgery. I did not respond well to any of the meds. Yes, the surgeries were difficult, no kidding. I was lucky to have one of the top surgeons in the country for my j-pouch--Dr. ***in ***. Six months later, I was radically better, and my life felt hopeful, bright and sunny again. Today I take no meds except the occasional lomotil.

 Reply posted for JCarnwell.

Hello-I'm 26 and I've had UC for 5 years now and I now have been faced with a decision of having this surgery as well. Like JCarnwell, I have several questions that I know I can ask to a surgeon, but they will give me surgeon answers. How is it really though? How does this surgery really effect people in their daily lives? Will this control urgency? If you could go back in time, would you have made the same decision? Can you eat normal solid foods? Can you eat at any time? (I can not eat at least 2 1/2 to 3 hours prior to being due someplace at a certain time)

A parade of medications and dosages have been on my plate for the past 5 years and nothing is helping. My condition is worsening and I must have this surgery eventually. My dilemma rests in when to have it and I fear the only reason for not doing it sooner then later IS fear of complications, the fact that this is a serious surgery, how this will affect my daily routine, and most of all, how to cope with this life-changing difference.

Can anyone offer insight?