Crohn's Disease & Ulcerative Colitis Support Group

I had to have my colon out in 99 at age 44 after 23 years of colitis. I was extremely close to having colon cancer. when they took it out they said it was pretty well destroyed and wouldn't have lasted much longer.
I had my small intestine hooked to the very last two inches of my colon so I still suffered from using the bathroom a lot but reduction in cramping discomfort etc.

my daughter had her's out at Henry Ford Hospital in Dec '07' has been a huge battle for her since, she is having a hard time keeping weight on and uses the bathroom as much as before if not more some days. will be happy to share stories if you like.

My cousin has ALS and UC. He had his colon removed 3 weeks ago and while he is still healing from the surgery, he says that he feels better now than he has in a long time.

I am fortunate to not be at that place right now, tho I had a GI (quack) who tried to get me to have my colon removed 4 years ago.

Best wishes to you.

Heh Dave, I was diagnosed a few years ago and while I am not nearly as bad as you I can tell you that eliminating all grain, grain products and starch has really helped. Also, when I had my last flare used nicotine patches and Pepto Bismol together. They stopped my flare in three days, as opposed to the normal couple of weeks. You cannot however take them if you are on some other form of medication. I was completely intolerant of everything they tried me on, they all gave me fevers. When they suggested prednisone I went for ANYTHING else I could and found out about the patches and Pepto on the internet. It really worked, but as I said I was on no other meds. Well, good luck and I hope you feel better. Linda Lee

My son had his colon removed in April of this year. He is only 9 and was 8 at the time of the surgery. his doctor said that Children seem to make the emotional change more easily that people who are older. Mostly because they adjust more quickly to change. This last hospitalization was the 2nd life threatening complication of his Crohn's colitis in a year and a half. It is different for him to have an ileostomy, but so good in many ways. He is back in school and able to do any activity that an active 9 year old can handle. He is not in pain and has gained weight and it is so wonderful to see him healthy. It was scary for all of us, but I am so glad this surgery was available. He had a colectomy with an ileostomy.

I just had an ileostomy in April. I was very scared, But I got help from a pre-ostomy counsellor at the Crhon's and Colitis Foundation. She happened to be my next-door neighbor. She gave me reading material, and answered all my questions. She even helped to teach me how to care for it after surgery. It made me more comfortable with the decision to have the surgery. And for once I have finally gone for more than six weeks without surgery of some type after a sixteen month marathon of hospitalizations. It's still too early for me to tell if the surgery slowed my Crohn's down, but it really did reduce my pain. Good luck and keep a positive attitude.

I have had a colostomy for 16 years and it was the best thing i could have done. I can eat anything and my life does not revolve around the bathroom. Write and ask me anything you would like.

My understanding is the only danger (other than the obvious ones DURING the surgery) is that with the colon gone, there is a chance the body cannot get enough nutrients calories.

So long as the rest of your intestines can pick up the slack, you should be fine. In fact, better than ever because your UC will be gone!

Just make sure you talk with your doctor about what options you'll have on the off chance that your body cannot get all the nutrients/calories from the rest of your digestive tract. There are ways you can "eat" while you sleep via intravenous food... but I know little more than that... no idea on the cost or how difficult it is to live like that.

Good luck!

I just finished my last operation in June and couldn't be more thankful for the surgeries. I had ulcerative Colitis for only 8 months but when according to the doctors my colon was essentially tissue paper. None of the medications I had been taking worked. Not even the first infusion of remicade. I had a three operation J-pouch procedure (1. removed colon, 2. Created J-pouch, 3. ileostomy reversal) I lived with an ileostomy for about 6 months because I had to push surgery back due to my parents schedule. Of course at first the ileostomy was hard to get used to but I did. I began to live my life like normal again. i was only 18 and I was still able to go to clubs, eat what I wished, swim, just about everything! Now after the last procedure things have been great. No pain, bleeding, nothing. I'm even traveling in Japan three weeks after my last operation. If you do have the surgery make sure to find a GI surgeon whom you're very confident in and comfortable with. Dr. Vignatti at Hartford Hospital is fantastic if you're on the East coast.

Thanks to everyone who posted a reply to my plea for help. Surgery has been looming over me for many years.... but my UC was never so bad that I was hospitalized. So I keep having hope - endless hope - that a new drug or a change in my diet or a combination or suppliments was going to bring on a 20 year drug free remission.

All of you that had surgery probably went through something similar. But you made the tough decision after trying many different "solutions".

After contacting many of you I am finding a common theme.... satisfaction and relief from the old life of UC/CD. You are all happy you had the surgery. Many of you made it even sound easy. All of you are drug free and have energy you didn't have before the surgery while you struggled with the disease.

Thank you for your willingness to answer my questions. Thank you for your openness and honesty. And thank you for coming back to this site to help those of us who are still struggling with UC and CD.

Today I will make an appointment for surgery in early August. I look forward to my colitis-free drug-free life.