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Surgery Opinion, How did you decide?

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Posted 1/5/2012 1:58 PM (GMT 0)

beatUC said...
summerstorm, the UC threshold for quality of life according to GI docs is 7 or less bm's a day.
Having a major body part removed and still going more than that doesn't sound like that great of a deal...

Well beatUC it would totally depend on a persons quality of life. If you are going to the bathroom 30x a day with blood, pain and urgency (I was) then have surgery and go 8x a day and not be sick anymore with NO pain, blood or urgency then I would say it's a pretty good trade off. It's all about quality of life and how sick you are. Most UC'ers aren't in that bad of shape but for those of us who were, surgery is a Godsend and nothing short of a miracle in my eyes.
Posted 1/5/2012 2:28 PM (GMT 0)
How often do you urinate per day? I'll bet you don't know. While a frequency of 4-8X per day with a jpouch may seem awful, it's barely noticeable. Most times we have to urinate our pouch empties at the same time. And emptying a jpouch is faster than emptying a colon, all empties in the same amount of time it takes to urinate. I spend less time in the bathroom with a jpouch than I did with a healthy, pre-UC, colon.

As for surgeons, you don't need to go to the CC. There are excellent surgeons all over the world, even in Canada. If you're seeking a top surgeon in Canada, go to www.j-pouch.org and PM Eric Bird. Don't be fooled by all the negative posts about life with a jpouch on jpouch.org. It's much like this site for those with UC. Most people here are having trouble with their UC, doesn't mean that most people with UC are having trouble. Most jpouchers are fine and are out living life.

Sue
Posted 1/5/2012 3:10 PM (GMT 0)

suebear said...
How often do you urinate per day? I'll bet you don't know. While a frequency of 4-8X per day with a jpouch may seem awful, it's barely noticeable. Most times we have to urinate our pouch empties at the same time. And emptying a jpouch is faster than emptying a colon, all empties in the same amount of time it takes to urinate. I spend less time in the bathroom with a jpouch than I did with a healthy, pre-UC, colon.

As for surgeons, you don't need to go to the CC. There are excellent surgeons all over the world, even in Canada. If you're seeking a top surgeon in Canada, go to www.j-pouch.org and PM Eric Bird. Don't be fooled by all the negative posts about life with a jpouch on jpouch.org. It's much like this site for those with UC. Most people here are having trouble with their UC, doesn't mean that most people with UC are having trouble. Most jpouchers are fine and are out living life.

Sue

 

Hmm, I don't know how many times I go urinate, I would venture between 4-6 times...rough guess. How can you urinate and empty your jpouch at the same time. Can you empty your jpouch on demand?

 

You're right, I think that most people that spend time posting on jpouch.org or whatever is people that have issues and problems with their pouch. I hope if I have surgery to feel good everyday and not experiencing pouchitis or any other issues. But there is no guarantee. I'd hate to be miserable like some of the people on jpouch.org, reading their posts seems shocked

Posted 1/5/2012 7:07 PM (GMT 0)
I worried about whether I would hate life after surgery, but this is how I looked at it. I KNEW without a doubt I HATED my life the way it was, I read posts of happy people, and a few who weren't, so I figured I would have surgery and take the chance that I wouldn't hate it. I was already miserable, so what would have been the difference?
Luckily I'm not miserable, its kind of a leap of faith thing.

As for going 7 times a day not being a quality of life issues I beg to differ with that when those 7 times are painful and urgent and bloody. That's why there isn't one set rule of when you can have sugery. Everyone is so different
Posted 1/5/2012 7:38 PM (GMT 0)
UCSince19 I go to school at Nova Southeastern. I totally feel your pain, how strange we saw each others post...lol small world. I read your post while sitting in Posterior Seg. Disease. Where are you at? Fortunately for me Cleveland Clinic Florida is literally walking distance from my house.

If I did not love what I do so much I would prob would have had quit after the first half of second year, which I am sure you have not forgotten how much fun second year is. Feel free to pm me about anything. Good Luck
Posted 1/6/2012 1:25 AM (GMT 0)

Reelgator said...
I do not feel sorry for myself and sometimes find peace in the thought of just going for it.

.

I know exactly how you feel! When I finally said the words, I felt complete peace!!! I have never been so sure of a decision in all of my life! Of course, now I wonder why I didn't do it sooner. Good luck!
Posted 1/6/2012 2:57 AM (GMT 0)
Yeah, but a lot of people who get surgery were going more the seven, fifteen , and that's with blood which wears on you mentally
Posted 1/6/2012 9:51 PM (GMT 0)
I just had my surgery 5 weeks ago, a colectomy complete with rectum removal and permanent ileostomy. No j-pouch in my future, and that is by choice. I actually thought the colon removal was by choice as well, sort of. I was hospitalized for two weeks prior to surgery and even the prednisone was failing to control my symptoms. I was having 23 BMs a day without the pred, and on 200 mgs of Imuran, and 12-15 WITH the pred. The only other option was Remicade, but, truth be known, I had had it with the game that had become getting this disease under control.

I had an excellent quality of life at times during the 14 years I had the disease - I was well enough to have three children, and was in remission for 5 years straight between two of their births. I also had another remission that lasted 2 years. The remissions were great, but when I was sick, boy was I sick. This last time reminded me how sick I was at diagnosis, and how bad the disease could get. I made the choice to stop playing the game, which means I refused to take the chance on a j-pouch. I was saying goodbye to the disease forever.

GOOD thing I did!!!! My GI called with my pathology report two days, ago. My colon showed severe high grade dysplasia on multiple sites. My last colonoscopy took place on 7/1/10, so it took a little over a year to go from a COMPLETELY CLEAN scope that showed nothing, not even active disease, to this. My doctor told me I would have been going through chemo and recovery had I waited to let Remicade pan out.

Sometimes we think we have the choice and we don't. If your gut is telling you something, go with it. Some things are out of our control :).
Posted 1/6/2012 10:54 PM (GMT 0)
     It never ceases to amaze me the diversity of this disease and how it affects people.

     I was much older than the majority of people when diagnosed, 52 yrs.  My main problem was ulcerative proctitis.  After suffering for twelve years and running through the gamut of meds....6MP, Remicade and then Humira, becoming prednisone dependent, I decided on surgery just two months short of my 64th birthday.

     My GI doctor would not refer me to a colorectal surgeon.  He said he didn't "know" any...lol.  What a crock!  I found my surgeon online.  I made up my mind to go to Philly because I do not trust any surgeons in south Jersey nor do I trust the hospitals in this area to conduct any major surgery.  I lost a few good friends through senseless carelessness. 

     My surgeon told me I was too high a risk for j-pouch.  By the time of my first visit to him I had already made up my mind I was ready for the "bag".  I was soooo tired of having such a poor quality of life.  My surgery was June 28,2010.

     I am now 65 yrs old and only take 1 pill a day and that is for my blood pressure.  Before surgery I took 17 - 25 pills daily plus rectal meds.  Ironically, my colon was in pretty good shape....no inflammation, no polyps, no dysplasia, but my rectum was "badly diseased" to quote my surgeon.

     I have my life back but unfortunately I suffer from osteoporosis thanks to that darn prednisone.

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