Surgery may not be a cure for UC

This article answered some questions for me about post-surgery life for UC-ers. I know we hear personal stories here but wanted to see a study with real numbers, etc.

It was written in 2006 and followed up patients from Mayo Clinic who had various colon surgeries. I found it informative.
If a person NEEDS surgery of course it must be done but after reading this I have a slightly more negative feeling about doing it.

I, like many, work hard to keep my UC under control, and it's not easy. Apparently life after surgery isn't easy either.

www.internalmedicinenews.com/speciality-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

Funny, I find those on the ostomies forum to be living MUCH happier lives than those on this one. Considering both of you have found remission through diet, you're in a good position to discount surgery (for the time being and hopefully for good!) For us, we have to look at the (unknown) long term effects of meds vs surgery and it's risks (adhesions, pouchitis, etc). "Worst case" scenario you end up with an ostomy, and really I do believe most of the issues related to that are emotional/psychological (though of course there are skin issues, riks of obstructions etc). Regardless, unless you are in true endoscopic remission, even if you remain asymptomatic, you may face surgery one day anyway due to cancer risk etc. Hopefully by that time they will have a more perfect procedure. From my extensive research on jpouch.org and other similar sites, most people, even those with issues, are much happier after surgery. Those with a lot of problems usually go back to the ileo and are usually happy.
Regarding the article, it's interesting because it's a long term study but for the same reason, it's not really representative of what would happen if you had a jpouch constructed today. J pouch surgery is less than 30 years old and continues to be improved on - someone who had it done in the 80s would likely not have the same results as someone who had it done today (I think). Also, in our case, IF we get to surgery, which we might, we would be looking at an ileo at least for the foreseeable future. Of course, stoma revisions, blockages etc would a concern, but in my mind a relatively minor one considering the other options. And the last sentence seems to indicate that most of the problems refer to a jpouch anyway. It seems there are many people out there who get on just fine with an ileo and many with a jpouch.
We all "work hard" to try to get remission but it's not always possible and in my mind this article didn't really raise any points you couldn't figure out by reading a few sites and doing some research. Despite the risks, seems most are still better off post surgery than with uncontrollable UC.

well said killcolitis and suebear.

this article is misleading in several ways. first it claims that colectomy is not a cure for UC. what it sould have claimed is that surgery is not always perfect. if you have no colon you cannot have ulcerative colitis. you may have other problems associated with the colectomy and/or your body's adaptation, or just other problems in general, but the colitis is gone. secondly, the patients were all treated and followed-up at one treatment facility. this is a pretty narrow segment of all UCer's who have had surgery. and like killcolitis said, many of these patients had their surgery ages ago, medicine and technology have came a long way in the last 30 years. no one should go into surgery thinking it's gonna be all peaches and cream afterward and everything will be perfect. there are countless variables that can play out, many of them unforseen. from what i've found in my own research, most people who've had colectomy post UC have been satisfied with the results regardless of the bumps along the way. take us for instance, we're not that far past surgery so i can't say what the future will hold, but as of now we are very happy with our choice. maybe from an outside symptomatic view it's not perfect, he's going to the bathroom far more often than before, has a good bit of leakage, pretty unrelentless butt rash, had a c-diff infection and we were prepared (still are prepared) for the possibility that there may be a reversal and iliostomy or other issues to be faced in the future. he does not, however, have UC anymore. that was cured when they removed the affected organ.

I also think the results offered are offered in a negative manner. I've been on the net for more than 15 years speaking with ostomy patients and in my estimation, less than 2%, if that, would rather not have had surgery after all is said and done.

"Patients who underwent proctocolectomy with Brooke ileostomy had a 17% risk of stomal revision by year 10, climbing to 27% at year 20. The cumulative risk of a stomal hernia repair was 9% at year 10 and 20% at year 20."

Sure, this is always a possibility, but from people I've spoken to, they'd rather have a stoma revision than be stuck with UC or CD again. This figure is not really a negative in favour of no surgery - think about it! Possibly (and it's a rare possibility - only up to 20% of patients at the 20 year mark) one surgery with pain lasting 2 - 4 weeks due to one surgery in 10 years, maybe 20 years vs years of constant UC pain, meds, diet, etc ie The remote possibility of having to have a further surgery due to stomal revision or hernia within 10 - 20 years (many good years inbetween) vs the certainty of living with 10 - 20 years of constant UC pain, meds, diet, etc. No contest in my mind and countless others opinions. I've gone 34 years without a need for surgery and still going strong.

"Within 15 years after colectomy, 22% of patients underwent additional surgery to relieve obstruction of the small intestine, Dr. Dhillon said."

Again, would you rather rather bet against the odds of putting up with 15 years of constant UC pain, meds, diet, etc or not have surgery for fear of 15 good years (before additional surgery) due to a blockage?" I know which I'd rather have. Again 22% at the 15 year mark is great odds.

“Half of the patients with ileoanal anastomosis get pouchitis,"

Yes, approx half of those with j pouch get pouchitis, but it's usually easily treated with a bout of antibiotics such as Flagyl and cipro for a month or two. The vast majority only ever get it once or twice in their life.

"and 10%-20% get permanently or temporarily rediverted after their initial surgery,” Dr. Sandborn continued."

That means 80% - 90% don't ever have to revert to an ileostomy after j pouch surgery. That's rather good odds don't you think?

Probiotic also added "eg suggesting that a normal outcome of pouch surgery is 4-6 bowel movements a day, when this article says that 8 (a rather horrendous number, in my view"

But consider those 8 times are without urgency! Before surgery I was going to the loo 20+ times a day (with blood). With a j pouch you can usually hold on for an hour or more before having to 'go'. To me, that would be worth it rather than having to go 'then and there' like I did before surgery.

There is no doubt that there are pros and cons to both sides....I'm also sure that there are plenty of ppl that have had their colon's removed in the 80's that have done just as well or probably even many cases better, than those that have had it done in the 90's or 2000, simply because there are some good surgeons and bad ones, so you can't really compare apples to oranges assuming that those who had surgery in the 80's are worse off compared to those more recent.

for many UCers, surgery has been a life saver and I think that most good docs would only recommend surgery as a very last option especially in a life or death situation. Of course, the patient is the one that usually has the final say on surgery one way or the other. And any good doc will explain all the pros and cons when it comes to surgery as well, nothing in life is without some risk.

UC is an incurable disease that varies greatly in severity and response to treatment. Getting your eye balls removed doesn't cure blindness. I think it is helpful to know that a large number of people that get surgery will continue to need treatment even if that surgery is the best option for some people.

Reading the posts here I often worry that people think they should get surgery that shouldn't. I have no doubt some do need it. I definitely think in general some surgeries just like medications are done because anything is better than nothing when nothing is NOT the worst option.

If you were actually happy with your results you wouldn't spend more time on the oestomies board than the UC board....you would be gone.

Fruitgirl,

That is exactly why I hang around! I had a GI who told me that I would have permanent diarrhea and a low quality of life if I had jpouch surgery. I respected his opinion and had been under his care for 2.5 years during the time of my severe flare. However, I couldn't go on and took a consult with a top-notch CR surgeon who told me that my GI was wrong. It was divine intervention; I had total faith in the surgeon and intuitively felt he knew more about the surgery and recovery.

Every year on the anniversary of my surgery I send my GI a letter letting him know what I accomplished the past year with a jpouch. I do that because I don't EVER want him to give false information to another patient! I hang around here too because when I first started coming around everyone hear had my GI's same opinion of surgery and I feel that I need to be an example to those that might need to consider surgery in the future. Oh, and I also write my surgeon a thank you letter every year. I don't want him to lose sight of what he has given back to me.

AZYrooper, I take no meds for my jpouch or for my former disease of UC; I take no meds at all. It's been 10 years with a pouch and 10 years where I have not had to see a GI or see a doctor for more than an annual physical. I live a very full life; am headed out for a one month hike/bike trip across SE Asia in less than a week. I could write a book on how much better my life is as compared with the severe flare that I couldn't kick. I am cured, despite what you think.

Sue

i dont stay here because im unhappy!  i do ocasionally come by and ask a question on the ostomy board about a new product or something.  but i stay here because when i was making my decision and i was terrified and scared and had no idea what to do the people here helped me and answered my questions and inspired me with their stories, and i wouldnt have been able to make it through without them.  And i want to pay it forward to help other people who are as scared as i was.  to help other people who are suffering after meds have failed them because they are so afraid of surgery because they don't know the truth. 

And no removing your eyeballs doesn't cure blindness, that's not even a valid comparsion, removing your eyeballs would cause blindness.  removing your colon doesn't cause UC.

there are tradeoffs for every treatment of UC, diets that work restrict what you can eat, meds have sometimes dangerous sideeffects, and surgery (any surgery) comes with risks.  I didn't choose to do a diet because i didn't think giving up all the things i loved to eat was worth it, when i knew with surgery i could eat those things.  I didn't choose meds because i knew there were dangerous side effects and i knew they might fail anytime.  Some people are really lucky and can achieve remission with meds or diets and are happy with that.  I never could be well enough to settle for it.  Some people with UC are fine and living their lives, and some of those people are here helping others.  Here's the thing about surgery, the majority of us are happy about it, some have complications, some have lots of output, some have trouble getting their wafers to stick or trouble with pouchitis.  but all of us are UC free, we are all cured of that disease!  and that was all that was important to me, i knew i was miserable with the disease with the meds wtih the restrictions and i knew that surgery might not be perfect but i knew it was better than just sticking with what i had and staying that way forever.

I don't think its fair at all to say most people aren't happy with their surgeries, i think they need to do a broader study, and take into account the lives the people had before hand.

Killcolitis said people weren't happy here.

I am never going to agree that removing any diseased organ is a cure. It might permanently relieve symptoms of a disease but that isn't a cure. No you aren't handicapped without a colon like you would be without eyes.

I really don't get the attack on the original post as it is from a Mayo clinic study done by two prominent GI researches. Mayo is also a pioneer in UC surgery and does lots of surgeries. The Olmsted studies might be the only really long term studies of a population and UC/CD in that population. We need more studies like this and more criticism of the treatments if you ask me.

I kind of think people over defend decisions that they make for all the treatments for UC. None of them are even close to perfect. So what is the point? Why take it personally?

You can find at least summaries of some of the finding here:
www.ncbi.nlm.nih.gov/pubmed/19143006
Not really sure how you get the details.

Post Edited (AZYooper) : 11/23/2010 9:43:10 PM (GMT-7)

Many patients that use probiotics daily and indefintely have fewer to no issues with pouchitis...for the first while after surgery D is often an issue for many (it varies for each) but generally over time they say that it improves more often than not. There's also a big difference between having a j-pouch and wearing a bag.

summerstorm said...
how is permanently removing symptoms not a cure?

from the dictionary
cure-
1. a means of healing or restoring to health; remedy.
2. a method or course of remedial treatment, as for disease.
3. successful remedial treatment; restoration to health.
4. a means of correcting or relieving anything that is troublesome or detrimental

Probably because your removing the organ along with the symptoms. It is akin to having a lobotomy because I had a stroke/clot.

I am not passing judgement - I am quite sure for many people this was the best choice and I hope to not have to choose.

hahaha! this is getting a bit silly.

just because you don't agree with or believe in something doesn't make it any less real. if you have a gangrenous foot and have it amputated, you no longer have it. you may have other problems associated with not having a foot, but your leg is not rotting off due to the infection. in the case of UC, if you have no colon it is completely impossible to have ulcerative colitis. my child had a diseased organ, the organ was removed, he no longer has it. we're only a few weeks post surgery and already his quality of life has vastly improved. it is a far cry from what any of the medications or lifestyle modifications offered.

and just because a study was performed at a facility that is widely accepted as one of the best, doesn't necessarily mean the study is completely valid, widely applicable, or without bias and/or fault. nobody here is saying surgery is perfect. i'm sure it's far from it. in most cases it is an option of last resort, but having possible problems associated with it doesn't make it any less of a cure.

AND this place wouldn't be nearly as useful if only people having problems came to share.

This is just one study. And as we all know, the disease is so individualistic. Also, the remedy, cure, whatever is individual. The decision to have surgery (unless one is at death's door and there is "no option") is highly personal, and no one can say for someone else whether that decision is right or wrong.

My theme these days seems to be "we choose our own risks" - and that's true with UC and meds, true with surgery and the options. If and when the day comes when my quality of life is compromised by unrelanting or non-responsive UC, I hope I will make an informed surgical decision and never look back, even if there are blips. Suebear, Summerstorm, and others who are "on the other side" can give guidance to those who may be heading toward such a decision. For them and for many others currently in remission, their time on HW is a form of giving back, of volunteering to the health community. We are all enriched by their contributions.

Summerstorm raises a good question - why do we question surgery for UC more than we question other surgeries? I guess... the digestive system somehow hits our emotions in a unique way.

Again, this is one study, funded by a company biased against surgery..... interesting, but not enough to fight over. Our common "enemy" is UC, not surgery.

Summerstorm raises