Curious about success rates

I think the satisfaction rate is 90% plus.

I've never heard of the rectum being stripped. There is a procedure, called the mucosectomy, where the rectal cuff is stripped of UC cells. I had that done because I had such a high degree of UC in the rectum. It's not done frequently and only by highly experienced surgeons. It eliminates the possibility of cuffitis, UC of the rectal cuff.

Sue

It sounds like what you are describing is a mucosectomy, where the mucosa is stripped from the rectum. But, the rectum is still removed, leaving 1-2 cm to attach the ileal pouch. It is not routinely done anymore, because of the risk of damage to the nerves that control continence. When the entire rectum is left in place, the mucosa is not stripped and a j-pouch is not needed. That is called ileorectal anastomosis. It is rarely done and generally has a poor outcome for UC patients.

Surgical techniques have improved over the past few decades, particularly with the advent of the double stapled technique, but total proctocolectomy with ileoanal j-pouch is still the preferred surgery. The success rate is about 90% in the better centers (up to 97% in the very best), and as low as 80-85% in centers with less skilled surgeons.

For those with failed j-pouches that do not want to have an end ileostomy (or have issues of skin irritation from the adhesives in the appliances), there is the continent ileostomy (Kock pouch or BCIR). There are not many surgeons doing this though. You can check out the k-pouch forum if you are interested.

Jan

P.S. I wonder if you are talking about the original "pull-through" procedure, where the rectum was left intact and the ileum was pulled through it like a sleeve and attached at the anus. The mucosa was stripped to avoid cancer and inflammation there. This was being done during the early years of j-pouch development. However, that procedure has been abandoned because in addition to the problem of unremitting horrible diarrhea, stray mucosa cells left behind could regrow. Cancer could develop there undetected because it was behind the ileal pull through.

quote:

I think the satisfaction rate is 90% plus

And where did you get this figure from? I did a search and found
here http://www.livestrong.com/arti...f-a-j-pouch-surgery/ that

quote:

After removing the colon and connecting the small intestine to the rectum, loss of control of bowel movements called incontinence, becomes a problem. According to a comprehensive review article in the May 2008 "World Journal of Gastroenterology," the incidence approaches 60 percent, with the worst occurrences at night and especially in the first few months after surgery. The incidence then improves over time.

http://www.livestrong.com/arti...rgery/#ixzz2BYliriay

I had that original pull-through operation in 1995/6 performed by Dr. Phillip Fleshner at Cedars-Sinai in Los Angeles. I didn't realize that wasn't the typical procedure at present. Sally

Also from the same LiveStrong article:

"Any of the complications have the potential to become chronic or severe, necessitating removal of the internal J-pouch and replacement with an ileostomy to drain waste to the outside of the abdomen into a collection bag. The overall failure rate for J-pouch surgery ranges from 7 to 9 percent. Despite this, 98 percent of patients who've had the surgery state that they would do it again according to the review in "World Journal of Gastroenterology."

kathy

Lou, I believe you are confusing overall satisfaction with complications. Having complications, particularly in the adaptation period is no indication of long term quality of life or satisfaction. Numbers will vary with various studies, but here is an example of an article with large scale data that claims 85-90% with long term functioning pouches. http://www.ssat.com/cgi-bin/colitis.cgi

Quality of life studies tend to show most patients are happy with their surgical choice, even if it is not perfect. Here is one of the ones from Cleveland Clinic. It is a little old (1999), but I chose it because it was very comprehensive and used a very large patient sample. Of note, 98% of the patients would recommend the surgery to others. This fact is even mentioned in the link you posted!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/

Jan

Wow, Sally! I didn't know they were still doing that procedure in 1995! My surgery was also in 1995, and it was considered mainstream. I had mine at Kaiser, which never does anything considered experimental. I wonder if the pull-through was the reason for you needing multiple procedures?

Jan

I totally agree Jan. I believe there are certain people who would never be happy, with or without a pouch. There are those who consider minor issues as "complications", i.e., getting up one or two times a night to empty your pouch, the most horrific of all complications -- even though in all they get 8 to 9 hours of sleep as they are able to get right back to sleep once they are back in bed. My goodness, I don't know many coloned people (over 45) that get 8/9 hours of uninterupted sleep per night. I know it hasn't happened for me in at least 24 years (since my first child was born) and I am fine. Others believe their pouch is a total failure if they have pouchitis once or get dehydrated once or twice. These aren't complications -- they are life. Again, I have many coloned friends who get dehydrated because of a flu or over exerting themselves. As I said before -- some people are simply miserable and will exaggerate the negative (no matter how minor) and negate the many positive things that a pouch allows for them. I believe the 98% satisfaction rate is a correct figure. Obviously, our lives are different, but a new normal doesn't mean misery and negativity unless you are already a miserable, negative person.

Thanks for the updated info Jan. I am very happy with my ileostomy and not looking to go for any type of internal pouches. I went through hell trying to get the j-pouch to work, and then the koch pouch (which was even worse). The BCIR I looked at, but my surgeon didn't recommend it (Dr. Schrock at UCSF who worked with Dr. Koch). My problems were chronic pouchitis,anal abscesses and others I can't recall. The pouchitis always recurred upon leaving the hospital and I basically had to start over with the j-pouch on two other occasions the first two years. One may have been an s-pouch though, I can't recall anymore. The Koch pouch was worse- the valve slipped twice in the first year. After so many surgeries, I needed to move on- I was in my early 21 or 22 at the time and still hadn't finished my first year of college due to all the time spent being sick or having surgery.

I knew someone else who had a j-pouch and it worked out ok. This person ate a lot of fiber all the time (nuts mostly) and gained tons of weight over the years. I don't have any issues with diet, wieght, or lifestyle at all. I always wonder about the success rate since I look back on my decision to have the permanent ileostomy wondering why I waited for so long. But I never really had a good experience as the first problems came about within one year after my initial surgery. So I am a little skeptical about 90% success rates. I'm also wondering how much of a rare case I am since I was now diagnosed with Crohn's just inside my stoma. I'm starting to think that even though UC can be "cured" through surgery, the underlying cause of the disease is just put into remission and I may not be such a rare case.

Anyways, good info. Yes,that mucosa surgery mentioned is most likely what I was referring to. As mentioned, not available when I had surgery and looking back, it wouldn't have made any difference. I hope all the j-pouch owners on this board can go a long time without any problems. As for the koch pouch or BCIR- I don't see why that's even done anymore. I fell it should go the way of the cassette deck. So much more work to take care of those things than the permanent ileostomy, and diet is so much more restrictive.

Hobbes650 - Dr. Schrock also did my 2nd (j-pouch creation) and 3rd (takedown) surgeries. Like you, if my j-pouch didn't work out, I wouldn't have any problems going back to an ileostomy. I thinks it's always a good thing when members with complications who choose to try something else, come back here and let others know all is okay.

I AM sorry you had to go through all this at such a young age. But it sounds like nothing has held you back.

kathy

Hobbes,
Speaking as someone who has a K pouch and has had it for 33yrs, I take exception to your comment...there is a very good reason to keep doing k pouches and BCIRs...some of us choose to not have an end ileo.
We all have our reasons, some of them esthetic, others medical or physical (breakdown of skin around the stoma, adhesive allergies, weak abdomenal wall...) but the bottom line is that it should be about choice...the more choices that you have the better you feel about your life...I couldn't have had a j pouch because they didn't exisit in those days and I didn't have a sphincter so the point was moot anyway. The k pouch saved me and gave me a semblance of a normal life...I was only 18 at the time and would never have had the life I did without it.
No judgement, just facts.
I am now militting for more K pouch awareness, development of the techniques and more availibility to both patients and teaching for surgeons.
Sharon

Hi skn69,

I certainly agree about choice, so allow me to take a minute to get my foot of of my mouth. My issue with the K pouhces in all their forms, is that the benefits are often overhyped and the negatives are often minimized. I am glad that you and others can go a long time without having any problems but some surgeons choose not to recommend the k pouch becasue of the valve slippage issues- mine was one. Looking back, the only major differences with having an permanent ileostomy versus a k pouch are pyschological/emotional. K pouches are promoted as more convenient/less burdensome than conventional ileostomies and I strongly disagree with that. K pouches really must be emptied every four hours before it gets too full- which can put strain on the valve and cause slippage. One annoying problem I experienced was that some digested food was difficult to expel through the catheter. I also could feel small cramps when it the k pouch was getting too full. None of that is an issue with conventional ileostomies. However, there is certainly a learning curve initally and emotionally it can take a while. So yes, the more choices one has the better and the patient really needs to be well infomred before making the decision. But it seems to me you're rolling the dice more with a k pouch in that future problems do come up and surgeons may minimize that part. For example, it was only after having my conventional ilesotomy that I learned you really need to empty the k pouch every four hours. Not sure how effective other types of continent ilestomies are. Dr. Shrock made a good case why the bcir isn't any more effective than a regular k pouch, but that was 20+ years ago. I'm curious if the results show otherwise now. Regardless, post surgery (no matter which one) was sooooo much better than being sick!

Hobbes makes a good point. If you are one of the few who have unrelenting complications, leading to pouch failure, it really does not matter how much of a success it is for everyone else. For you, it is 100% failure.

But, what has been learned in the decades of pouch surgery, both ileoanal and continent ileostomy, is that a Crohn's diagnosis is associated with a high failure rate, around 50%. Unfortunately, it is not always known at the time of surgery what the real diagnosis is. It is not that having a colectomy turns a diagnosis from UC to Crohn's, but that the Crohn's just fully manifests later. It really was Crohn's all along. It probably would have occurred as small bowel Crohn's anyway, given enough time. Even though they know a lot more than they did 20-30 years ago, they still cannot diagnose IBD with any sure accuracy or predict the disease course. They keep working on it though.

Jan

Hobbes,
Mine was done in 79 by Dr Cohen in Toronto...he did everything in his possiblity to convince me NOT to have it done, offering a conventional ileo for a couple of year as a test etc...he tried but I was young and stubborn. It took 3 surgeries to get it right then 20 good yrs when I lived 'normally' without too many extra problems...then valve slippages, twists, prolapses, hernias etc...I've seen enough and still fight to keep my pouch. Maybe I am just an ego maniac or a materialistic fool but the fact is that at 51 I am not ready to have a bag. My skin is a wreck with any sort of adhesive and emotionally I just cannot face it.
I was told of every possible disaster, followed closely and warned repeatedly.
I am a lousy chewer so I need to pick out the pieces when I eat fruits/veggies but have learned that they can be blended or mashed without causing me problems. I eat a dissociated diet where I usually don't mix protiens and carbs so my digestion is better than before.
I intubate 1xs every 6+hrs when I eat pasta/carbs 1xs every 3-4 when I overdo the fruits/veggies. I sleep through the night (7-8hrs).
Once the pouch matures things settle down.
Like I said, it is about choices and trade-offs. And a comfort zone. You must feel comfortable with your body, the changes that you must live with and the effort that it requires.
And please, leave the foot in ...
Just stay healthy.
Sharon

Hi Jan!


Good point, but I wanted to make one distinction even though it may just be semantics. I'm not sure that I "had Crohn's all along" but that's because I think Crohn's and UC are ultimately, pretty much the same thing. My disease had started in my rectum and progressed throught my entire colon over the next 2 months. After it's removal,the colon and rectum looked like UC as per the pathology report. I then went 25 years without any problems. My illness looks like Crohn's now, but I don't see it as just random bad luck. That's the problem with IBD since the cause is still unkonwn. We often get into semantics by using so many different names it's easy to consider all of them as separate illnesses,but that may not be the case. I actaully consider myself fortunate to a) have had so many years without signs of disease and b) have the Crohn's diagnosis after having a convetionl ileostomy becasue I still have 100% bowel control. Bowel control is so underappreciated!

Jan, I sent you a response to this message from my phone, but I don't see it on the site. Did it come through? Sally

Sally, are you talking about the response on page 1? That is the only one I see.

Hobbes, you are correct. It is just semantics, as they are all just forms of related IBD diseases. But, they really are not one in the same. They even think that there may be actually more types of IBD, than just Crohn's and UC, or at least subsets of these diseases. My point was that some people think that they "convert" from UC to Crohn's, when in actuality, it is just the nature of these diseases to have relapse and remission, sometimes for decades, and it does not always follow a straight line path, and sometimes all the signs and symptoms do not manifest at first. Unfortunately, any of us with UC could later find out it really is Crohn's, since there are no specific tests for it that are reliable. Even genetic tests only show a susceptibility. So, you can really never rule out Crohn's, but you can diagnose it if there are enough signs and symptoms. It is sort of like putting a puzzle together and there are pieces that were dropped on the floor and lost for 20 years. It is only when you find the lost pieces that you see the whole picture.

If you had an indeterminate UC diagnosis, you have a greater chance of ultimately being diagnosed with Crohn's. This study indicates that if your initial symptoms were non-bloody diarrhea or weight loss, your risk of an eventual Crohn's diagnosis is higher.
http://www.ncbi.nlm.nih.gov/pubmed/17478347

Jan

Just when I think i'm 100% sure of my next move I read a thread like this, and my mind explodes.

Suebear, I had the same procedure(mucosectomy) done with the Jpouch creation, and it was a total failure for me. Within a month or so, the cells grew back enough to start the UC bleeding cycle all over again.

Ad

Adrian,
Please don't panic...if you are unsure of your decision for any reason please talk with your doctor(s)...but if you were sure before then I do not see why you should change your opinion now.
Sharon

Another issue over 'satisfaction' is to be clear what you are comparing J Pouch life to - life before the illness which necessitated the surgery or the reality of being unwell with an illness that in all probability would have deteriorated? I am sure we would all prefer not to have become unwell - but we did and willingly took a rather good solution.I know that when I feel frustrated with my pouch I often forget the difference between the two situations.

I cannot tell you how glad I am to see some of the comments, stats, and links regarding success rates and satisfaction levels like the ones from Jan and Laurie. Over at the HealingWell Ostomies page some people have become quite negative about surgical options, and I have been exasperatedly trying to explain that most people who have these types of surgeries are happy with the results... but I had no evidence like this to back it up, and it doesn't mean much coming from someone who hasn't even had her takedown yet. Thanks for staying positive in a place such as this, Ladies!

Yes, unfortunately, just like with anything else, people usually take the time to complain, but not to post neutral or happy results, particularly about medical or surgical issues. I don't know why, but maybe it is because once you are feeling well, you just do not want to dwell on it any more. You want to live as if it is no longer important to you. For the most part, that is a good thing. But, for those looking for hope and encouragement, it can be a big disappointment and it looks like all doom and gloom.

That is why these quality of life studies are so important. They actually try to look at all the patients, not just the loudest or the most unhappy!

Jan