surgery - why don't more UC patients opt for it?

Hi - new to posting a question although I've been reading your forum for months - which is a wonderful help for people.  My hubbie was diagnosed in '93, in remission on and off over the years with Asacol and Prednisone for the flares.  The last 2 years have been hard on him, can't get off the pred & can't get into remission.  His doctor started him on 6MP about 5 weeks ago, with goal of getting him off pred.  He has blood tests every other week, so far tests are good for the 6MP.  No real success from the 6MP yet, doc said it'd be 2-3 months for effects to show.  From all I read about people on remacaid, 6MP, asacol, pred, Pentasa, etc. - it seems that UC patients go from one drug to another, trying to find something that will get them into remission and a 'normal' life.  We visited a gastro surgeon when the 6MP drug was started and she said to give it a try before thinking of surgery.  I wonder why more UC patients don't opt for the surgery to get off the drugs.  I read the brochures the surgeon gave us so I know what it entails.  I want to help hubby as much as I can and I know he's miserable with his current health.  His UC seems to be at the center of our lives and it's very frustrating.

Thanks for listening.

Loving and Supportive VA Spouse

I think you have to have UC in order to answer that question. Most of us, myself included, do not or did not want surgery. It really comes down to a very difficult decision that each patient has to make in the best interest of their health. It's also the hardest decision many of us will ever have to make. Having had surgery I can tell you that I wished I wouldn't have waited so long but on the other hand I had to be fully convinced that I would never again reach remission before opting for surgery. There are no hard fast rules for this nor is it all in black and white.

Sue

I think for me the hard thing about surgery is once you've had the surgery, there's no going back. And with the possible complications involved, surgery is a scary thing, and this is a major surgery. The medications controlled my symptoms for UC, but I was faced with surgery when they found high-grade dysplasia in one of the biopsies from my colonoscopy last year. So the surgery did not improve my quality of life, but I had the surgery so I wouldn't have cancer. And they did find cancer in one of the biopsies of my colon after it was removed, so surgery was definitely my best option.

But for me the bottom line was I would not have considered surgery as long as my symptoms were controlled by the medications. And I probably would not have the surgery if I had any hope that the medications would eventually control my symptoms.

The J-pouch is an option for most people..

Hey all and glad to hear you are okay, UC Rick!
Surgery is definitely hard to face. I suffered way too long with ulcerative colitis. I started out with proctitis and “progressed” to full blown ulcerative colitis. This progression took about twenty years of suffering intermingled with periods of remission. I was in denial about what my doctors were telling me concerning this disease. I would rather taken massive amounts of prednisone and asacol than even think about surgery. I took prednisone practically all of my adult life. It didn’t matter that I would puff up like a giant marshmallow and bruise at the slightest bump. It didn’t matter that 6mp caused my liver enzymes to go crazy and I was too tired to take a step. I didn’t want to hear any talk about surgery. I thought I could handle it. When I think back, I don’t know how I did handle it because I had a husband, three small daughters, and I worked full time in a very stressful profession. It finally took a diagnose of dysplasia in my colon to make me realize that surgery was the only answer. Having witnessed both my parents dying of cancer in their early fifties, I knew my denial had come to an end. I had surgery this past summer. However, because I waited too long, I was not a candidate for J-pouch surgery. My life has changed for sure, but it isn’t as bad as I thought it would be. And for once in a long, long while, I am not taking any harsh medicines that make me look and feel so miserable.

I agree! I'm surprised at your choice of words Old Hat- coming from one who's had UC for so long, I would think you'd have done enough research into surgery to know that wearing an ostomy bag is not generally as horrific as you make it sound. Or so I've been told, while doing my own research.

I am new here, and while I found the particular comment about the ostomy bags disheartening, it also was only an opinion.  And, while we are supporting each other through our illnesses, sometimes it is good to let a harsh truth shine through to dispell any false hopes and ideals we may be misleading ourselves with.  I think that for some whose symptoms are debilitating, the bags can give untold amounts of freedom.  If others do not feel that way, or feel their benefit was not as great, it is still only their opinion of their personal experience.  It is everyone's cummulative experience we need to read through, face our own problems squarely and decide what is best for US based on the information we are able to gather for ourselves.  Sometimes that information has bad with the good and we will have to weigh the benefits against the risks for each of our personal situations.

Silver

Thank you for your support on this comment. Whilst I don't mean to inflame opinion on this matter the best person to judge whether a bag is as Old Hat puts it is not me, not Old Hat but the people who have such bags. Therefore I've posted my own comment on the matter on their forum. You can check out their reaction to this discussion there, which is quite different from the comment originally posted.