surgery - why not?

The overall success rate of the j-pouch surgery is around 95%. Finding an experienced surgeon is key. Those who do experience complications are typically those who find out they have Crohns and not UC. A good way to decide if surgery is right for you is to make a list of all the things that you had to miss out on because of UC. My list was very long. I got sick on 2 vacations, couldn't go out on the boat all summer, couldn't sleep at night, and could not leave my house in general. If your list is not long then go for medications.

There are WAY more reasons not to have surgery than to have it.
It bothers me that surgery is presented as a viable option way too soon in the game by many docs and so many of you that have had it.
It seems that many of you haunt these forums after having surgery to try to talk others into it.
THis particular forum is for we who are still dealing with our UC, there are other forums for post surgery folks.
Sometimes the human body needs time to adapt and heal, jumping into surgery is a decision that lasts for the rest of your life.
In my opinion surgery should be a last resort to save one's life, and my opinion is based on 15 years of UC and the experience of doctors trying to railroad me into surgery.
Here I stand with my colon intact and living a wonderful, active life.
A colonectomy would have been the biggest mistake of my life.

Obviously, those of you who had surgery had been through a lot of pain and suffering and were convinced that it was the right decision. I'm sure we all wish you a long healthy life with no complications.

That being said, I stand by my opinion that it should be the common practice among physicians to exhaust other options (both standard and alternative) before doing anything that's not reversible.

Best wishes to everyone

P.S. I think I'm on an LDN-induced high. The drug causes an increase in endorphins and I went to the gym today (exercise makes them, too). Came out feeling better than great!

ItsAlwaysSomething,

I absolutely agree with you!

BeatUC,

You rock! And I really appreciate your continued support and shedding light on the fact that surgery is not THE answer, unless it's for life-saving reasons.

notsosicklygirl said...
I definitely appreciate the post surgery folks who come here and let people know that there is life after surgery & that life can improve after surgery if you're struggling with UC. I personally wouldn't have surgery unless I wasn't responding to the available treatments but I am thankful to know that it is a viable option if I am unable to get a flare up under control. I also don't question people who choose surgery before trying all of the drugs, that's their choice.

I know surgery can have questionable results but chances are, the results will be acceptable and you will no longer worry about accidents. There are people who are severely flared up for years and tried everything treatment under the sun without result and in those cases, surgery can be your only hope. Surgery also offers a future without medication and worry of flare ups.

See, this is a decent response. I support the text here.

Somedude said...

InSoFla said...
ItsAlwaysSomething,


I absolutely agree with you!



BeatUC,



You rock! And I really appreciate your continued support and shedding light on the fact that surgery is not THE answer, unless it's for life-saving reasons.

Arguing about those 2 points surgery or not surgery is really situational and individual.

You get two types of people:

The ones that are in constant remission via diets, meds etc and they feel good. Why would they advocate surgery. Of course there's no reason to do that.

And the people that tried all diets, meds and are constantly miserable. There is a point in that person's life where they will choose and take a chance for a better life without their colon.

It's not about what is THE answer and not.

That pretty much sums it up somedude, thanks. There is no one answer for everyone. Telling someone surgery is a mistake and should be only used to save lives is ridiculous.

Shouldn't we also think of when we got the disease? It hits at the worst time for some. Imagine wasting away your 20s because you objected to surgery.

I'm on the fence about it. I don't have a lot of options. I have a possible intolerance to 5ASA's. I'm limited to what OHIP covers. And I can't even afford the ridiculous cost for insurance, especially having a preexisting condition. I've looked, and it's bad if you're living on minimum wage in my area.


You have to look at all sides. Take a look back and see how your hand is dealt, or you maybe stuck with nothing.

Thank you Sibby and Babeinthewoods for being so wonderfully nonjudgemental.  No one knows everyone else's story.  For those who automatically rail against surgery, I'd really think that you'd have more compassion.  You don't know what myself and the other j pouchers and ostomates have been through, and it is assinine to think that we only come on here to try and convince others to have surgery. 

We have a wonderful community over on the ostomy board, and I still consider myself as having UC so I lurk over here too, looking at the new research.  I certainly hope that there is a cure one day.  My father-in-law and a very young nephew have UC and a good friend has Crohns.  My father-in-law's on Lialda and a restrictive diet, the nephew treats with SCD and my friend with Remicade.  None have had surgery and none are considering it.  I fully support them and pray for a cure for them someday. 

However, in my situation, surgery was the best option.  Prednisone didn't work.  Asacol didn't work.  I had pancolitis so suppositories and enemas didn't reach high enough.  I tried SCD and it didn't work.  Before I could try anything else, I had a bad reaction to Remi and Imuran and almost died.  I got better, the doctors said we could try Humira, but still, as a 23-year-old, otherwise healthy woman, I decided to give up.  It wasn't worth it in my situation, and I will continue to come on here and the ostomy board to help people at the end of their ropes.  I think your convictions are valiant, but I also think they are wrong.  People deserve a non-argumentative place to discuss the very serious and necessary topic of surgery.  If you have any questions, please come over to the ostomy board.  We won't bite!

Beachgirl, you are welcome :) I'm alright with surgery. I'm not against, not entirely for it. But if the time comes when I would have to decide biologics or surgery, I'd choose the later.


Bostwis, is that stat for internal jpouches or external? If I'm going to have the surgery, I'd want my parts inside, thank you. lol.

For those of you that surgery has helped, thats great, but as I say, I can only go by my own experience and in my case, the doctors were totally wrong!
Also, there are many problems after surgery, to call surgery a cure is a joke.
Read this study:
[http]http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html[/http]

"The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology.

Indeed, colectomy wasn't the end of the story for the majority of ulcerative colitis patients who underwent the procedure in Olmsted County, Minn., during 1940-2001. The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."

beatUC,
I'm so glad you have found a way to keep yourself in remission with meds (though I understand you take yourself on and off of them? Don't know how that works with Imuran, but if that's the case, even better for you).
But, the article you continue to refer to is a little odd. It was circulated on this board in similar threads a few years ago and I have a few serious problems with it.
First, it refers to colectomy rates between the years 1940 (!) to 2001. This in itself invalidates the article in my mind. Yes, a brooke's ileostomy is an old technique but surely you can not compare post colectomy complications from 70 years ago to now? Surgical techniques have improved so much I can't believe they didn't factor this into their analysis of outcomes. I don't care if it is Mayo coming out with this stuff, this already sets off serious alarm bells in my mind.
Second, they conflate ileostomy with jpouch. They start out talking about colectomy rates over a sixty year period, then at the end start talking about complications with jpouch (decreased fertility for women for example, is not a concern for women with an ostomy but is for a jpouch and so it is not a complication resulting from a colectomy itself). They also talk about frequency with a jpouch but again that's not the same with an ostomy and many with a jpouch would say they have no problem pooping 8 times a day considering what they have had to deal with in the past.
Third, they advocate early aggressive treatement of UC to prevent colectomy. However, if you look at pubmed and read about "top down" intervention for UC with infliximab etc you will see that it may postpone colectomy for up to two years but does not prevent it for the vast majority of people with severe UC.
Fourth, they don't mention any of the short or long term risks of these meds. I would take a stoma revision over lupus, lymphoma, etc. It's true the risks are relatively rare, but how rare? Just because someone tolerates a med and it works for them, does not mean they are safe. In fact, I think it's perfectly reasonable not to take that risk and opt for surgery early on. You clearly don't and that's your call.
This article is seriously flawed and it annoys me.
Surgery vs medical or alternative management is so personal that I see no point in arguing about it. In my daughter's case, we have tried almost everything and it's only the fear of crohn's which is stopping me from surgery. It is seen as a "last resort" but if it were me and not her, I would have had them take the stupid colon a long time ago and moved on.

All good points and I certainly don't try to persuade people one way or the other, I speak only from my personal experience.
As you asked for, here is some current research on J-pouch surgery from Livestrong.com:

Incontinence:
"According to a comprehensive review article in the May 2008 "World Journal of Gastroenterology," the incidence of incontinence approaches 60 percent, with the worst occurrences at night and especially in the first few months after surgery."

Dehydration:
Dehydration still presents a possible complication though, especially with exertion or illness, and may require hospitalization and treatment with intravenous fluids.

Internal Leakage
The review in the "World Journal of Gastroenterology" also states that 5 to 10 percent of patients have separation and leakage at the site where the small intestine is sewn to the rectum or anus. This represents a significant and potentially serious complication in the early post-operative recovery. Infection can develop and require aggressive treatment with intravenous antibiotics.

Pouchitis
One of the most common complications after J-pouch surgery, inflammation of the pouch, affects over 40 percent of patients at some point, indicates a study conducted at the Oregon Health and Science University and published in the journal "Diseases of the Colon and Rectum" in 2008. Many patients experience less than three episodes of this pouchitis. A small unfortunate percentage suffers from chronic pouchitis requiring daily antibiotics. The severity ranges from annoying to debilitating, with quality of life becoming very poor as fever, chills and abdominal pain develop and watery bowel movements increase to 20 or more per day.

Failure:
The overall failure rate for J-pouch surgery ranges from 7 to 9 percent.

There are also current success and failure rates for colonectomy that I can post here if you like.
The truth is what I'm interested in and truthfully, the stats for surgery don't look all that great.

Aquafly-my surgery wasn't as a last resort, there were lots of things left for me to try. I just didn't want to waste anymore time.

Beatuc always posts the same article and the same findings, its great to see that there are possible complications, but some more recent data would be better.
As for some of the problems with jpouches, incontinence and dehydration are both things people with active uc suffer from. I was in the hosptial 5 times for dehydration with uc, twice with my ileo, once because I had a stomach virus and went on to the er before I got dehydrated. Its very easy to stay hydrated. I read a lot of people having accidents all the time, jpouch leaks are more common at first, but from what I understand they go away, as the pouch learns its new job.