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If surgery is cure for UC, why do we take so much medicine and not go for surgery?

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Ulcerative Colitis
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Posted 7/14/2014 10:53 PM (GMT 0)
As far as I know, which admittedly isn't very far, Uc is often worst distally in the rectum, so when the colon comes out, it all does which means bag for life. At the very least, I do think at least some or many UCers need a bag for life. Are you saying they stitch your ileum to your butthole? This would still mean a life of D as there is no colon to pull water from the stool.
Posted 7/14/2014 10:54 PM (GMT 0)
Right there with you BG.
Posted 7/14/2014 11:00 PM (GMT 0)

freddyj said...
As far as I know, which admittedly isn't very far, Uc is often worst distally in the rectum, so when the colon comes out, it all does which means bag for life. At the very least, I do think at least some or many UCers need a bag for life. Are you saying they stitch your ileum to your butthole? This would still mean a life of D as there is no colon to pull water from the stool.

Literally hasn't heard of the j-pouch, which has been around since the 1980s.

www.j-pouch.org/Whatis.html
Posted 7/14/2014 11:08 PM (GMT 0)
Literally haven't considered surgery. Way to be tactful.
Posted 7/14/2014 11:13 PM (GMT 0)

freddyj said...
As far as I know, which admittedly isn't very far, Uc is often worst distally in the rectum, so when the colon comes out, it all does which means bag for life. At the very least, I do think at least some or many UCers need a bag for life. Are you saying they stitch your ileum to your butthole? This would still mean a life of D as there is no colon to pull water from the stool.

I don't know where you are getting your information from but you are totally wrong.
Posted 7/14/2014 11:17 PM (GMT 0)
Well many do need bags, and I said I wasn't expert on the subject, as nice cup of tea so tactfully pointed out, thanks for reiterating. I think we can all agree no one wants a bag, and surgery is scary and major either way.
Posted 7/14/2014 11:20 PM (GMT 0)

beatUC said...
Many more people than you think who have surgery for UC continue to have symptoms and are then told that they have CD. I don't think I could handle that, hence my non-surgery choice.
If surgery ever happens with me it will be because I had no other choice.

So your definition of "Many more people than you think" is about 3%. I would say that is very few people have CD after being dx'd with UC.

My surgeon's j-pouch failure rate is 3% and he said that was because of mis-diagnosis of UC/CD.

P.S. I had a bag for over 8 months, it's not as bad as everyone makes it. I'm speaking from experience, not conjecture.
Posted 7/14/2014 11:26 PM (GMT 0)

freddyj said...
Well many do need bags, and I said I wasn't expert on the subject, as nice cup of tea so tactfully pointed out, thanks for reiterating. I think we can all agree no one wants a bag, and surgery is scary and major either way.

Again you are wrong, some people want and have opted for permanent ostomies for many reasons.

The colectomy is not the major surgery, it is an easier surgery to recover from. The major surgery is when they build the J-pouch, that is a much more complex and difficult surgery to recover from. I'm speaking from my own experience.

Oh yeah, I liked my bag because it gave me my life back. I woke up from my colectomy with my End Ileostomy and I instantly felt better.
Posted 7/14/2014 11:30 PM (GMT 0)

bananagirl said...
I havent gotten surgery because i dont want a bag either! Same as freddy! I dont want three surgeries for a jpouch so thats why i will try any meds i can. Surgery is a huge deal and if i can stay in remission with what im doin now, then i will keep doing that. When there comes a time when nothing i do is working, then ill get a bag but only if im totally screwed.

Depending on your medications, your surgeon's preferences and how sick you are you can have it done in 2-steps. It's not recommended but some surgeons will do the j-pouch in 1-step (no bag) but you run the chance of more complications like abscesses and leaks.

I was offered a 1-step at one point and I had a 3-step surgery recently, after my experience I couldn't imagine having a 1-step surgery.
Posted 7/15/2014 12:18 AM (GMT 0)
My surgery was done in two steps. Two step procedures are done just as often as three step procedures. A lot of people assume they need a three step but it just depends. I was in pretty sad shape and I was still able to have a two step. Start to finish it took me four months and I was back to my life. That is such a tiny amount if time in the grand scheme of things.
Posted 7/15/2014 12:30 AM (GMT 0)
Because the fatality rate of colectomy is .5% to 3% depending on certain factors. (Those rates includes a 30 day period after surgery). Which I consider to be high.

Its a MAJOR surgery, you could die right on the operating table from embolism or bleeding, you could die afterwards in much pain from infection.

Fact is the chances of dying from surgery are far far far greater than the chances of dying from medication side-effects. That's why surgery is LAST Resort.

That all said, if I had failed all treatments and was suffering again, I would get the surgery, but I would just take a permanent bag, no way would I risk more surgeries for a jpouch that still requires frequent emptying and has a 30% chance of becoming inflamed itself(pouchitis).
Posted 7/15/2014 12:37 AM (GMT 0)
Unless it's my only choice, I'm not doing it.
Posted 7/15/2014 12:37 AM (GMT 0)
I made the choice to go with a jpouch because I was tired of the different meds not working. I spent 2 years trying to find something to put me in remission and I know this isn't nearly as long as most, but I was tired. I wanted to enjoy my time with my kids while they are young and be able to live my life. UC impacted that tremendously. After having and using my jpouch now for just over a year, I am thrilled! I am doing everything that I was not doing before - spending the days on our boat, skiing, going to playgrounds without bathrooms, etc... I would most certainly rather have a normal healthy colon, but I can't so this is my new normal. Everyone's normal is different... Ultimately, the decision is up to the person and what they are most comfortable with. For me, it was the right decision, but may not be for others.
Posted 7/15/2014 12:40 AM (GMT 0)

CDN26 said...
Because the fatality rate of colectomy is .5% to 3% depending on certain factors. (Those rates includes a 30 day period after surgery). Which I consider to be high.

If that is an accurate number than it also includes 80 year olds with colon cancer, people who have toxic mega-colons, smokers, etc... which are all high risk surgeries. If we are talking a relatively healthy UC patient in the prime of their lives this isn't the case.

CDN26 said...

no way would I risk more surgeries for a jpouch that still requires frequent emptying and has a 30% chance of becoming inflamed itself(pouchitis).

Pouchitis is only temporary, chronic pouchitis is rare and usually ends in a CD diagnosis
Posted 7/15/2014 12:49 AM (GMT 0)

ByeByeUC said...
Start to finish it took me four months and I was back to my life. That is such a tiny amount if time in the grand scheme of things.

After having a J-pouch myself I no longer can imagine having a UC flare for an extended period of time when you are basically guaranteed to have another flare afterwards. Give up a few months due to surgery and there is no more UC in your colon because its gone.
Posted 7/15/2014 12:55 AM (GMT 0)

ks1905 said...

CDN26 said...
Because the fatality rate of colectomy is .5% to 3% depending on certain factors. (Those rates includes a 30 day period after surgery). Which I consider to be high.

If that is an accurate number than it also includes 80 year olds with colon cancer, people who have toxic mega-colons, smokers, etc... which are all high risk surgeries. If we are talking a relatively healthy UC patient in the prime of their lives this isn't the case.

CDN26 said...

no way would I risk more surgeries for a jpouch that still requires frequent emptying and has a 30% chance of becoming inflamed itself(pouchitis).

Pouchitis is only temporary, chronic pouchitis is rare and usually ends in a CD diagnosis

Yes, it was just for colectomies in general. But I dont think people who have been recently taking immune suppressing medication and recent predisone usage qualify as healthy either.
Your supposed to tell a surgeon if you've taken prednisone in the last year, that's how bad it is at weakening tissue and complicating surgeries, and I'll assume most UC'ers headin' for operating table will have used prednisone.

Anyway, maybe once 80 year olds and emergency surgeries for mega colon are removed from the equation, the numbers would be somewhat lower, but there is still a real chance of dying, and that can't be disputed.
Posted 7/15/2014 1:06 AM (GMT 0)

CDN26 said...
I dont think people who have been recently taking immune suppressing medication and recent predisone usage qualify as healthy either.
Your supposed to tell a surgeon if you've taken prednisone in the last year, that's how bad it is at weakening tissue and complicating surgeries, and I'll assume most UC'ers headin' for operating table will have used prednisone.

I was on Simponi and Predisone (40mgs) before surgery, they tried to do my surgery Laproscopically and my skin split from the Predisone so they had to do an open surgery on me. No big deal, I'm going for plastic surgery to get it fixed in a few months. They did my surgery in 3-steps because i was on immuno-surpressents, so by the time I had the major surgery (step-2 the J-pouch creation) I had most of the immuno-surpressents out of my body by then.
Posted 7/15/2014 2:01 AM (GMT 0)
ks1905, you're coming off like a know-it-all douche.
We are not talking about the "failure" rate, but the CD vs CD diagnosis rate, which as I understand it, is very high.
Of course, if any of us have to have surgery, I would fully support and hope for the best outcomes. This is not an all or nothing situation. My intentions are that all of us get the best care that we can..
Posted 7/15/2014 1:37 PM (GMT 0)
There is so much mis-information out there about surgery for UC. Particularly the J pouch procedure. I suggest to anyone looking to have surgery to do a lot of homework on the subject...go to a surgery consult (or two) and speak to a surgeon. Don't let the posts that say "Oh, you'll get chronic pouchitis" or "Oh, you'll end up with a CD dx" scare you. Those are NOT common occurrences in the big picture. Some people would rather suffer than do something about it. I should know because I was one of those people until I just couldn't go on like I was anymore. I see a lot of myself in some of these posts that flat out cringe at the thought of surgery. That was me. And now it's been a blessing that I had it done. I couldn't imagine going back to the way I was with UC.
Posted 7/15/2014 2:36 PM (GMT 0)
Thank you all for your input. Seems like in my case, I will need definate diagnosis before going for surgery. Indermined is not good enough. I might have to get bag. J-pouch may not be choice for me as there is always chance that I might have crohns.
Posted 7/15/2014 3:24 PM (GMT 0)
I have a question - how long does a j-pouch last?

Is it a life long fix, so to speak? Once you've got it that the way everything stays for the rest of your life or do you eventually have to get a bag anyway?
Posted 7/15/2014 3:26 PM (GMT 0)
Jonny,

The surgery has been practiced since the late 80s so that's as much there is on longevity. There are jpouchers out there living life with 30+ years with a jpouch and I know an 84 year old with a jpouch. It's made of the small intestine so it should last your life time.

Sue
Posted 7/15/2014 3:27 PM (GMT 0)

Jonny_Murray said...
I have a question - how long does a j-pouch last?

Is it a life long fix, so to speak? Once you've got it that the way everything stays for the rest of your life or do you eventually have to get a bag anyway?

it will last as long as you do. It's not something foreign....it's your small intestine.
Posted 7/15/2014 4:37 PM (GMT 0)
Its not something I am considering - was just curious.
Posted 7/15/2014 4:37 PM (GMT 0)
Its not something I am considering - was just curious.
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