For those who are doubting...

Just some quotes and stats from medical journals regarding the success rates and outcomes of surgical options:

www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/

"Long-term quality of life after ileal pouch surgery is excellent"

"On a scale of 0 to 10, mean happiness-with-surgery scores for each of the four postoperative intervals studied ranged from 8.9 to 9.3. "

"...quality of life was shown to increase after the first 2 years after surgery, and there was no deterioration thereafter."

"Ninety-eight percent of patients would recommend the surgery to others."


www.ssat.com/cgi-bin/colitis.cgi

"Patient satisfaction is very high in patients with UC who undergo colectomy."

"When the IPAA [J-pouch] procedure is performed at centers with significant experience, at least 85-90% of patients have long-term functioning pouches. Nearly all patients would recommend the surgery to others, regardless of their operation (i.e., proctocolectomy with ileostomy or with IPAA )"

"At least 85% of patients have perfect fecal continence. In general, sexual function is preserved."


.

Little confused about the quoted stats above because it intermixes supposed jpouch success rates with straight colectomy and perm ileo surgeries.

Anyways getting rid of the diseased colon is a good thing. Absolutely. But choosing jpouch or straight perm ileo is something that needs to be well thought out. I shared my real world failed jpouch experience - which was from 2009 and onward - and was called negative on this board. I am sorry that I had to deal with significant additional years of health difficulties and multitudes more surgeries because of a failed jpouch!!! I wouldn't consider it a positive past four plus years myself. But believe me it was not something I chose. No reason I should have to hide what I went through. Failed jpouches are prevalant. Go to Cleveland Clinic someday and sit in the 3rd floor waiting room in the Crile building. You will meet an enormous volume of failed jpouchers.. they travel there from all over the world to get help. This is not something that should be hidden or disguised from people who are in a decision making phase.

It is time people out there acknowledge that problems happen. The jpouch by no means is an end all be all "cure." And when they do fail there are very very serious implications, implications that can affect almost your entire body - sexual function, nutrition, gynecological, urological issues. And its definitely not..."ok the jpouch failed and you can just go back to an ileostomy". It is a whole lot more complicated than that. People need to truly understand that is absolutely not the case. The jpouch removal surgery is a far more complicated surgery than any of the jpouch creation or just initial total protocoloectomy surgeries. The jpouch excision surgery is riddled with complications.. no matter if you have the best colorectal surgeon in the entire world caring for you.

Anyone thinking about surgery- choosing between a jpouch and a perm ileo up front - deserves to know the whole story from people who have lived it...not just about a bunch of stats.

http://fullfrontalostomy.com/about-me/
www.spillingmyguts.net
http://hannah-semicolon.blogspot.com/
these are just a few real world stories of what happens after the jpouch fails.

Sure for some the jpouch works ok, as they each have their own definition of success. Maybe needing a toilet 10times a day is ok, or living on a limited diet and a llifetime of potent antibiotics or biologics is acceptable. Maybe even for some they don't have to do that and the jpouch truly is great. But there is absolutely no reason to disguise that for some it fails and when it fails.. it majorily puts your health at risk and potentially wastes a bunch more years of your life.

Yes if you are vain and you find an ileostomy truly disgusting.. then yup.. you must try the jpouch. Because an ileostomy limits you in no other way in your life, other than your vanity. But if that is not you.. then you need to really think through the whole health implications if you are in a position to make a decision about jpouch or perm ileo.

ddd45 - Just curious: why did you choose the J-pouch to begin with back in 2009...? (Was it because you "were vain and you found an ileostomy truly disgusting"?)

I chose the jpouch because I put BLIND FAITH in my ex-surgeon. I did not research, I did not speak with other jpouchers or failed jpouchers, I did not find out real facts and I did not query even my ex-surgeon on what "success" meant.

My first surgery for UC was emergency so he just ripped out the colon and left in the rectum. After that, I was content, happy, healthy, almost drug free, and very active with a well functioning end ileostomy. But regardless, I HAD to have another surgery because the rectum had to go. So when I questioned my ex-surgeon about just sticking with an ileostomy, I believed him when he said that one rectum removal and backside closure surgery was more difficult than the step 2 and step 3 of jpouch surgeries. I believed him when he said "lots of people get pouchitis but its always curable with a 7day course of antibiotics" and "if the jpouch fails its pretty simple and you just go back to an ileostomy." I was also affected by his attitude toward me and asking me why would a "young, now healthy, attractive female want to spend her life with an ostomy bag attached to her".  

I felt he was almost "godlike" because he had saved my life and given me my health back after my first emergency surgery. So what he said... I believed. He led me down the path of the jpouch because that is what he knew, that were his expectations of what a patient should have, and he probably wanted another tick mark on his list for completed jpouch surgeries. I blindly followed him.

My BAD. Truly my bad for not doing my homework and for completely trusting my ex-surgeon. That is exactly why I post here in hopes that others in a decisionmaking process are able to find more complete information.

Post Edited (ddd45) : 11/10/2012 11:47:22 AM (GMT-7)

     I did no research regarding ileos...j-pouch, k-pouch or end...I was just sooooooo sick of being sick.  The only research I did perform was to find a GOOD colorectal surgeon in Philadelphia.  I live in south Jersey and would NEVER consider having major surgery in my local area...too many boo boos.  It was a toss-up between Rambeau and Fry, both excellent colorectal surgeons.  I noticed that Rambeau now does his surgery at Temple University Hospital...bad area, big time...and didn't want to burden my family on having to go into that area to visit me (even though my husband retired from the R & D machine shop at Temple Medical School..lol).  Dr. Fry had excellent credentials and even trained at the Cleveland Clinic..so that was good enough for me.  He told me I was not a candidate for j-pouch surgery, mentioning that it would be more stressful on my system than open heart surgery.  Mind you I was 63 yrs old at time of surgery, prednisone dependent for two years straight (not to mention the numerous times before that), with type 2 prednisone induced diabetes and uncontrollable high blood pressure. 

     At my first visit with Dr. Fry, I had already accepted the notion of having a permanent ileo, so I was ready.  I had a few post surgery blips which I mentioned numerous times before.  Would I do it all again?  IN A HEARTBEAT!!!  I am now 66 and would feel like a million bucks if it weren't for the osteoporosis the prednisone gave me.  I no longer have diabetes and my blood pressure is very well controlled with only 1 pill a day .

bootstrap said...
This REALLY is not a "which surgery is better" debate - it's an "isn't it great that we have options" chat... All of the surgical choices are valid; there are pros and cons about each one, and all of them have mostly good reviews by the people who choose them.

Heh, it doesn't quite work that way for us humans. lol.

The minute we are faced with choices, options, those will be debated. (I.e. politics)

DDD45 had his Jpouch fail so naturally he/she's going go "against" it from past experience.

My goal is to be as close as possible to how I was before, including appearance and health. The closest one right now, is the J Pouch.

bootstrap said...
SomeDude - Am I to take it that you are seriously considering surgery before being willing to try rectal meds? You crack me up.... but you know I love ya. ;-)

No no...I still have quite a few stuff to try, btw I already tried rectal meds. lol Honest.

But, I remain an informed patient. That's why I spend time on this section. As a matter of fact, I visited most sections of this site. I've posted in IBS, Crohns, U.C. and in here.

I LUV u too, call me. lol

ddd45
Your surgeon said that the rectum had to go. Why? After five years I still have my rectum and anus. Having no trouble.

Dan

Christine
A week after my colectomy/ileo I developed peritonitis and was flown by helicopter to a large hospital downstate. The leakage was at my rectum. The sutures did not hold. Perhaps all or part was removed then. Never thought about it.

There have been many posts about problems when the anus is removed and having to use a wound vac for weeks to get healed. Not really familiar with a wound vac and that's fine with me.

Dan