It came down to several choices for me, as I had gone through the asacols, pentasa, remicade, colazol and 6mp without improvement:

1. Live with the UC and keep taking prednisone.
2. Have the surgery.

No brainer if you are out of options for medication. Still, try all the medications out there to see if it helps. This surgery is serious enough that you do not want to do it if you have options left.

Not sure if you are aware of this statistic or not, but after the 8th year of UC, your chances of getting colon cancer are astronomical. I had UC for 8 years with flare-ups requiring hospitalization every year by the time the oral meds stopped working for me. I chose not to take the Remicade which was the only other option for me besides surgery because Remicade causes extensive problems on it's own that seemed more hindering than the UC itself plus the side-effects of the Prednisone. My biggest fear since the time of diagnosis was getting colon cancer. Once it spreads beyond your colon, it is difficult to control and a good prognosis is less likely, so I chose surgery before it came to that. Honestly, life afterwards is difficult but I always tell people that are amazed at what I've gone through that life after surgery is much better than UC flare-ups as bad and as often as they were. I guess it depends on your unique situation, how well the medications are still working, whether or not you have colon cancer, how sick you are of being sick. But, once you make it through the surgeries and you have become post takedown (ileostomy closure), it is incredible that there is no more pain, and you can eat a variety of foods that you can't with UC, and bathroom frequency increases but it's much more comfortable. Everything improved for me after surgery. Everything. I have a problem with incontinence right now but I am only 3 months post takedown. Just think about what is right for you. You will know when it's time.

I am a little different in that I refused to let myself live the UC life for long years that many here did. I had UC for only two years before electing surgery. Clinically I had left side UC (no pancolitis) and it was a moderate case. However, symptomatically it was severe. My GI never understood why I was in such pain and why I was so weak and sick because my colon was not bad enough to get me where I was physically. As we all know everyone is different. In those two years I wound up hospitalized twice for 7-10 each time on IV steroids to get my flare under control. After the first time I was able to finally get into remission, but that only lasted 9 months. The it was back on prednisone, enemas (which I never tolerated well - they actually sent my colon into spasms) etc. I was miserable. The side effects from the drugs was tearing me up. I was taking 20+ pills a day and I was only 27 years old. It finally took 7 days in the hospital on 360 mg of IV solumedrol daily to get the bleeding and diahrea to start to slow. After that I improved, but never did come completely out of the flare. The side effects from the pred were terrible and I was quickly sliding into depression and mental instability. My GI got my off the 'roids ASAP. That was it for me. I was done - I decided I wasn't going to do this anymore. I went to the Cleveland Clinic for a final opinion from a GI there and asked him if I decided to try Remicade and not have surgery with my history was I looking at a life time of hospital visits. He said there were no guarantees, but probably yes. The next day I was talking to a surgeon.

I did have complications - severe ones that almost cost me my life and I never did get to enjoy a j-pouch. I have an end illeo for 4 years now and couldn't be happier. I do what I want when I want to and hardly notice that I am any different that the folks around me. I do not regret having surgery at all. I only wish I had no had the complications that I did.

I made a trip in 1991 to the Univ. of Chicago hospital to see Dr. Steven B. Hanauer
in hopes of getting in on a clinical study when I'd had poorly-controlled
UC for about 4 years, despite long-term prednisone, etc. He told me that
my best chance for getting back to health was surgery. He said a straight ileostomy
was the safest, surest route, so that's what he'd elect to do. He said my colitis
had to be under control before I would qualify for trials of cyclosporine,
etc., and to get it under control, he'd recommend hospitalization, IV fluids, and steroids,
which I had undergone at my local hospital 3 years prior to that. I had not considered
surgery AT ALL before that point, but I had a j-pouch 3 months later. I was
anemic but not having a major flare-up at the time of surgery, and both operations
went without significant complications. I found out that fortunately my insurance
(an HMO) would cover the j-pouch surgery at the local hospital (Carle), but it would
not cover any experimental medications or even the appointment with Dr. Hanauer, so for
me the j-pouch surgery was an obvious choice. I liked my surgeon, Dr. Julius P. Bonello
(now at U.of IL College of Medicine in Peoria).

Regarding the chances of getting colorectal cancer over time,
a widely-cited 2001 meta-analysis of 19 studies addressing this issue:

http://gut.bmj.com/cgi/content/abstract/48/4/526

estimated the cumulative probability of getting colorectal cancer
as a function of time since the onset of UC symptoms as
2% by 10 years, 8% by 20 years, and 18% by 30 years. These numbers
varied widely among the different studies, however.

If you choose to postpone surgery beyond 10 years of UC, you should have
colonoscopies every 1-2 years:

http://www.medscape.com/viewarticle/566844

This message has been edited. Last edited by: bobolink713,

I think I was about your age when I had the surgery. I waited until it was an emergency so I was very weak and spent a great deal more time in the hospital than is normal with the surgery. The first surgery had me in the hospital for 45 days as they had to stabilize me and build me up to the point where I was strong enough for surgery. I had one of the leading surgeons in that field in Boston Ma but even so something went wrong and they had to rush me back into surgery a few days later. Somewhere there was a perforation and I almost died. After that because I was in bed imobile for so many weeks I got a blood clot in my leg. I am not saying this to scare you if I had been strong and not very ill I probably would have come thru the surgery better. The other factor is age. I have heard the younger you are the better chance you have of the surgery being a success. I have never regretted the surgery just the fact that I waited to long
good luck
cheryl

As said before dont take too long to make your mind up, and have the condition worsen. I had my first op as an emergency and its awful

Take the step, you'll never look back

I had UC for two and half years and did every drug available and relized nothing was helping. I went on sick leave, got of the predizone and scheduled surgery. Its been a year since my first surgery and a month and a half since I had my take down. I decided to go slow and get back in as best shape as I could between surgery's and I feel great, minor issue here and there but well worth having a some what normal life again.

You`re only putting off the inevitable.You know for sure that sooner or later this disease is literally gonna bite you in the ass. I know it sucks but thats the truth you know it and we all know it.Take care of it now so that you can have a chance at a fairly normal life again.
Just my 2 cents.

One of the most important issues is having an experienced, skilled doctor. A surgeon that has done hundreds of operations. Also an understanding GI that takes time with you and listens.

It sounds likes you researched the Mayo clinic. Are you going to be staying there while you recover? Will you have to travel for your checkups? If you had emergency surgery would you have to travel far? This could be a problem if you deteriorate and have to be rushed to the nearest hospital. My local hospital wouldn't know what to do. I would never let them cut me open. It might be better to schedule the surgery instead of letting it become an emergency.

I was 33 years old and suffered with UC for 9 years. I know I made the right decision for a better life. I have had my Jpouch for 14 years. I had several obstructions thru the years, all from foods I ate. These are the only complications I had. I have my energy back. I don't miss any family moments. I was always sick in bed or in the hospital.

Try to keep copies of all your medical records for the local doctors and hospitals. My local hospital doesn't really know much about J-pouches, so they always diagnose me with a cyst and Crohns.