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Just wondering about the option of surgery

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Ulcerative Colitis
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Posted 1/14/2010 2:07 AM (GMT 0)
Hi all:

I am very new to this compared to many here and I am in no way ready to pursue surgery but I sometimes think about things...the future, etc.

So I'm wondering...why aren't we able to just say we want colon removal instead of having to go through all the meds that have terrible side effects and may or may not work?  I mean, if the surgery is a cure why is it a worst case scenario.  I do realize that the surgery is NOT like having your colon and that there are complications...but is running to the pot 15 times a day and taking meds that could potentially cause life threatening side effects not a complication?  Also wouldn't it be better to have the surgery when you were younger and able to recover faster?  I'm not suggesting that everyone WOULD choose it before all the meds...but WHY don't we have the choice...it's our body...

Sorry if this sounds very naive on my part, I was just wondering...

Posted 1/14/2010 2:49 AM (GMT 0)

You can have surgery at any age.  I know many UCers who had jpouch surgery in their 60s and one in particular who had surgery at age 69!  She is now 79, healthy and very happy with her jpouch.  Age is really not a factor.

It's not common to want to pursue surgery unless it's a last resort.  Most of us who have/had UC want to hold on to our colon and believe that long term remission is achievable.  Those that should consider surgery are patients who are steroid dependent or patients with a very low quality of life.

Surgery has been a blessing for me but I personally had to exhaust all options to get to this point.  I had to be convinced that remission was no longer possible.  Coming to that realization made the long road of recovery easier to deal with.  I do think all UC patients should become familiar with the surgical options and be familiar with choices.  20-30% of UCers will need to make a surgical choice so it's important to be informed.

Sue

Posted 1/14/2010 4:24 AM (GMT 0)
I also had surgery in fall of 2008 after exhausting all options.  I was so scared of the temporary bag that I just couldn't face it until I had no choice.  I had the surgery in 2 stages, the surgery's was only 4 mths apart and the temporary bag was just like a bandaid (certainly not enjoyable but knowing it was temporary it was just fine).  I did several meds including remicade and 6 MP until they started shutting my bone marrow done.  If I had to do it over again I'd opt for the surgery.  I feel absolutely fantastic.  I am still excited about doing the most simple things and eating everything, things that were taken away while I was ill.  I am from Alberta were you can opt to have the surgery without having to go throught with the meds.tongue tongue tongue
Posted 1/14/2010 4:31 AM (GMT 0)
i didnt try all the meds, and you dont have to, you can choose surgery. I chose it cause i was tired of wasting my life for a cure that might never come and because i was tired of those dangerous drugs. I often wonder now why i didnt have it right away!
it is better to have any type of surgery when you are younger, and healthy. Just because its easier to heal.
Alot of people worry that surgery will ruin their quality of life, but i think that you need to weigh what quality of life you really have now.
Posted 1/14/2010 4:41 AM (GMT 0)
Reasons I did not choose surgery over taking meds:

1. At age 18 my GI prescribed 20 mg (or less) of prednisone and my first flare went away after a few weeks.

2. My first remission lasted 3 years.

3. Subsequent flares became gradually more harsh and meds where increased but I still go into remission where almost all my symptoms go away (IBS-like symptoms remain somewhat).

4. Dating, college, vacations, work, physical activities would all be changed with surgery.

5. By the time my meds were strong enough to have risky side effects (5 years ago) I was so far along in my career, family and life that surgery would be a major impact over even the 2-3 flares that hospitalized me for a week or so.

I would choose a few months of prednisone every 3 years over surgery still. Imuran and Remicade (which I'm on now are a different matter but surgery is not without risk either and is life changing).

It's not an easy decision. I like my colon.

Everyone's symptoms and life are different; surgery may be best for you.

 

Posted 1/14/2010 4:45 AM (GMT 0)
Amy, I remember a number of years ago there was a young woman who came to this forum. She was in her twenties and had been diagnosed with UC just after she graduated from medical school. She was just about to start a surgical residency and knew it would be unthinkable to have to leave during a surgery to use the bathroom. She opted for a permanent ileostomy as her first and last treatment so she could continue to pursue her career.

So it is possible, I just think most people aren't comfortable with having such a major surgery unless they feel they've exhausted the viable medical treatments. As for me, I always thought that I'd have surgery and three months later they'd find a medical cure. Fortunately I finally went into remission and didn't have to make that choice.
Posted 1/14/2010 4:52 AM (GMT 0)
as having had colon surgery at a pretty young age (26), i can say that it's a viable alternative.  it's not perfect & i would recommend exausting all options before going that route.  i probably wouldn't have had the surgery if i didn't have my other health problems but, if you think you can't get it under control i would research about the option.  as i have posted before i am very happy with my results, it is nice to have some peace of mind that you won't have to run to toilet at random during a flare smile. 
Posted 1/14/2010 5:31 AM (GMT 0)
I'll exhaust all of the medical options before surgery, but I won't give any of them that much time to work. I decided (partly to suebear, summerstorm, and others being on here) that I'm not going to let UC run my life, so if the meds aren't working, out goes the colon. But, I definitely want to try the meds to see if they work...I mean, I'm in a really solid remission, and even though I know a flare can happen at any time, am feeling really optomistic about staying in remission for a while.
Posted 1/14/2010 12:14 PM (GMT 0)
Wow, thanks everyone for the great responses.  Like I said, I am in no way ready to pursue surgery but I do know in the back of my mind it could come to that.  I like to get your opinions because you have 'been there, done that' like no one else.
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