Surgery not the best option

There is a big lie perpetrated by the medical establishment that surgery "cures" UC.
Most people who have surgery for UC regret having it, are addicted to many drugs afterward and have many quality of life and self esteem issues.
That being said, surgery can also save your life if your UC gets that extreme.
I have had UC for more than 10 years, I currently take imuran, asocol, and prednisone as needed.
My quality of life is great after being hospitalized, losing more than 60 lbs, transfusions, etc.
The surgeons were trying to railroad me into surgery, but with the help of family and a wonderful doctor, I was able to just barely avoid it. I still have seasonal flareups but have learned to manage them with lifestyle and meds.
My message is -please don't rush into surgery, exhaust every other avenue before thinking that surgery can cure you, it won't and it has it's own issues.

Post Edited (beatUC) : 6/13/2011 2:34:04 PM (GMT-6)

beatUC,

We are a diverse group of people; more important, everybody should be free to make their own decisions.

There are people who literally go from healthy to surgery in 2 to 3 months without any other options. Then there exists people who live most of their life in remission. Some suffer a continuous flare up beelining from one restroom to another carrying a pack bag of clean clothes and ton of meds.

Several years back my GI group told me that I must have a colectomy done ASAP. I declined because they had treated me only with 30 to 20 mg prenisone regimen for 2 years. I finally managed to get my GI doc to start a high-dose taper that worked so well that I was in remission for a long time. The colonoscopy after showed a clean colon. That was an eyeopener for him and me.

Now he listens to me, and I basically make the decisions regarding my care. I've lived years in remission after that ASAP colectomy diagnose of his.

That said, people must make their own decisions. For some operation is the best choice, and who am I to tell them they make a wrong choice? They're not telling me what an idiot I am for playing with prednisone for four decades.

We all must make our own decisions. The information is out there.

Enjoy your day.

Welcome to HW BeatUc. I'm curious, where did you get your information that concludes that surgery is not ideal and that they are on a bunch of meds?

food for thought:
http://www.ibdsupport.org/forums/topic/116136-help-post-surgery-nightmare/
https://www.healingwell.com/community/default.aspx?f=38&m=1961129

You also need to realize this: A lot of the people who have problems after surgery are the people who have been mis-diagnosed and actually have Crohn's. Surgery will not help Crohn's b/c it can be in the entire digestive system. I made absolutely sure (the best myself and my dr.'s could) that I indeed had UC and not Crohns before going into surgery. UC does not turn into Crohn's.

The nightmare stories are not the norm. I was living a nightmare dealing with severe UC.

Once again I think everyone's different. Personally, I know a few people who are living up to their fullest after having the surgery. It's a hard decision to make, of course, for everyone when it comes to that point.
I just think it's hard to say which is better emphatically. No one knows how it's going to turn out and if the case isn't severe enough, keep your organ.

OK -all good points and I wish nothing but the best of health to all of us.
My overall point is that doctors tend to push surgery a bit to hard for my taste, They pull the trigger before getting a feel for the patient many times. My first doc wanted me to have surgery within a year of being diagnosed and he definitely oversold the benefits.
After almost dying in the hospital, I am in the best shape of my life and through trail & error, have found the right med mix for a full and active life WITHOUT surgery.
So, as I said, YOU are in charge of your own health, do your due diligence, check out ALL your options, and do what is best for you, regardless of what path the doc is trying to lead you down.
Be well/

I found the exact opposite. My doctors were all trying to push the meds and I would have rather just gotten surgery. Even when I was having horribly painful side effects from Remicade they still wanted me to try it for longer. I said no way. I am done with meds and their side effects. Done with this painful UC rollercoaster ride. I want my quality of life back... and I got it with my permanent ileostomy. I feel better than I have in six years. Just as it is hard to know how your body will react to meds, it is impossible to know how it will react to surgery. Until one has gone through the operation, they would never know. For me, whatever risks and difficulties I faced with surgery, ended up being completely worth it. Now that I have gotten over the learning curve of living with an ostomy appliance (which took about 10 weeks for me), the uncertainties I face daily now are miniscule compared to the ones I did with UC. I feel very healthy and normal. I definitely don't have any regrets, pain medicine addictions, or self esteem problems. My only quality of life issue is that it is unbelievably better after surgery.

Even my GI docs who wanted me try the medical route acknowledged that over 95% of people who have surgery are happy with the results, so I am not sure where your doctor got that information. Regardless, it is a deeply personal decision and I am glad that you have found satisfaction in your route back to health as I have in mine. Best wishes!

"Most people who have surgery for UC regret having it, are addicted to many drugs afterward and have many quality of life and self esteem issues,"

- I'm not sure who these "most" people are and I've never heard of a j-poucher addicted to drugs? Surgery is not for people with only a mild case of UC. If I could have controlled mine with medication I never would have had surgery. I ran through all the drugs within five years and even prednisone stopped helping me. My GI - who I adore - never mentioned surgery once, actually I had to bring it up because he knew I wasn't keen on the idea. He offerred one last experimental, intravenous drug I could try and by that point I was done and said no more. Keep in mind, when a patient chooses surgery that GI most of the time loses you as a patient - so there's not a lot in it for them. I haven't been back to mine since.

I had my colon removed in the spring of 2010 and had my final reversal surgery in December. I'm feeling great and have zero regrets. For five years I had only half a life and now I'm making up for lost time.

If I get to end of the line w/drugs and have a choice of bloody diarreah 30+ times a day or surgery, it would be surgery.

Every medicine and treatment has its downside. It comes down to picking your poison.

http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

"The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology."
"The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."
People like quincy don't want to hear any of this, but it's the truth with many studies to back it up.
Please read this study, do your research and don't let anyone influence your choices dealing with your disease,
make up your own mind!

I guess the decision for surgery or medication route must be taken at the moment when it's available to us, if it will... We should not make comments over it if we were not there. And by "there" I mean inside that people skins. They know better what's good or bad for them if they are clear headed enough to weight the consequences for both options.

and it's a personal choice. you cannot blame someone for choosing surgery over medication if that one is happy for it.

yes, there are miracles and people who were told that surgery is their only option were cured and entered long term remission. but who can say that this would have happened to all of those who'd chosen surgery?

I believe that your thread title should have been named "" Surgery - not a good option FOR ME "", since your choice seemed to be the right one. For YOU.
As you can see there are people here who are happy with their choice, which is exactly the opposite you've made.