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Posted 3/11/2012 3:03 PM (GMT 0)
I'm always alarmed when I see anyone casually mention the possibility of surgery before trying every other possibility.
My GI recommended a total colectomy 6 months ago when pre-cancerous cells were found at my last colonoscopy.

I did a LOT of research before refusing the surgery.
I visited my GI yesterday to schedule another colonoscopy and asked him if he fully realizes what he recommended...the possible complications, adhesions, pouchitis, readmission occurrence, etc.
He responded by saying it is the recommended "protocol" for people with my condition.
But........he also said that the last patient of his that had the surgery was in the hospital for 25 days. (That was for part 1 of the process.)

By his tone, I think he was indicating that he was not happy about making the recommendation.
I'm wondering if doctors who suggest anything other than the accepted "protocol" issued by the AGA leave themselves open to lawsuit.
Any thoughts?
Posted 3/11/2012 4:22 PM (GMT 0)
GIs are trained to treat disease medically. Surgeons are trained to remove it. Two different schools of thought.
Complications can happen with ANY surgery. No one can make you have surgery or not have surgery so I doubt this has anything to do with lawsuits.

My GI opposed surgery too. I make sure that every year on my surgery anniversary that I send him a note informing him of all my feats the previous year. I would hate for him to try and talk another UC patient out of surgery if they felt it was in their best interest.

Sue
Posted 3/11/2012 4:37 PM (GMT 0)
ItsAlwaysSomething,

I quite agree with you.

I believe doctors are way too easily prone to suggestions, like biologics and surgery, that if it were them in our shoes, they would first seek out alternatives to and make those suggestions ones of last resort rather than first resort.

Maybe the problem is that it isn't them?

And yes, alot of it is CYA.

Posted 3/11/2012 4:37 PM (GMT 0)
Why would you be alarmed? It's a personal descision that one can make by gathering information. My first GI doctor was also opposed to surgery. Thank God I dumped him because all he wanted to do was pump me full of drugs that didn't even work. I went thru hell before I finally had surgery.

I agonized over my descision to have surgery and I'm sure many others have as well...it's not something to take lightly. But for people with severe UC that cannot be controlled with meds, it's a very viable option. Under the hand of a highly skilled surgeon the j pouch is highly successful and thats just a fact. And of course for those who don't want a j pouch, an ileostomy is also an option.

Not everyone is going to need surgery but there are some that are in a dire situation like I was and it's no fun living life that way. This surgery has litterally saved my life.
Posted 3/11/2012 4:40 PM (GMT 0)
My first GI recommended surgery 6 months after I was diagnosed.
He was promptly fired and here I am 11 years later still with my colon intact and living a great life.
I think most doctors do follow a protocol which is deeply flawed and some of the time they are just dead wrong.
I makes me very sad to think of all the millions of patients over the years who blindly followed a doctors' recommendation to have surgery, when they probably would have gotten better with meds and time.
It's almost too sad to think about....
Posted 3/11/2012 4:53 PM (GMT 0)
I forgot to add in regards to that patient with a 25 day hospital stay. You could go in for an appendectomy and have a 25 day hospital stay. Complications can happen with ANY surgery. I can assure you that is not typical.
Posted 3/11/2012 7:06 PM (GMT 0)
     I agree with just about all the posts here.  Surgery should be, and usually is, a last resort for us suffering with IBD.

     The first time my GI doctor even mentioned the word surgery to me was when Remicade failed.   He had a smirk on his face when he said it too, meaning he didn't think I would agree.  When I told him, "Yes, I think surgery is the answer for me now", he just about had a stroke.  At the time, I was suffering with UP for twelve years, was prednisone dependent for the last two years, 6MP and Remicade had failed.  I had portapots in practically every room in my house because I could not make it to the bathroom and we have a ranch type home.  You could say I was existing, not living.

     I did give Humira a shot for three months after Remicade, but that didn't work either.  My GI doctor STILL wanted to pump me full of yet another medicine, but I had enough.  I had to find a colorectal surgeon on my own and I am tickled pink I did.  I was not a candidate for j-pouch but I was soooo sick I had already accepted the idea of having a bag for the rest of my life.  I have NO regrets.

     You mentioned about complications.  We have a dear friend who died after a hip replacement and he came through the operation with flying colors.   He died post-op.  If you looked diligently enough, you could find lots of surgical blunders.  But, does that mean you would want your appendix to rupture because you didn't want an appendectomy, or suffer from heart disease because you didn't want that valve replaced?  Think about it.  This disease is devastating to a lot of people.  My paternal grandmother died from cancer of the rectum at the same age as I am now (65) and I sure didn't want to go that route.

Posted 3/11/2012 8:09 PM (GMT 0)
I really think the majority of people who succumb to surgery DO try everything. Having said that, there is nothing wrong with someone opting for surgery that does NOT want to go the heavy drug route. I wish I skipped all the big gun drugs but hindsight is 20/20. And I'm sorry but in my opinion, when your colon looks like hamburger meat, no diet is going to fix that.
Posted 3/11/2012 9:36 PM (GMT 0)
ByeByeUC, my colon did look like hamburger meat, now it looks like a baby's bottom.
I agree that most people who have surgery do go through a lot of hell and make their decisions the best they can, my beef is with the doctors who, if it was THEIR colon, would hold off.
I can only go by my own experiences, and I was WAY past the point of surgery, and guess what, it got better.
You folks who have had surgery God bless you it's been a rough ride and to find relief is a great thing, but I just think the medical community is way off on this subject.
Posted 3/11/2012 9:54 PM (GMT 0)
I think your GI is recommending surgery based on the finding of precancerous cells? If he's doing that, it's probably because he has your best interests at heart. I don't know which meds you have been on but it doesn't seem that you have been on the "big guns". And he doesn't seem to be pushing for those. That's likely because of the LGD.
I am in the opposite position with my daughter's GI who is refusing to recommend surgery without reason. I can't figure it out but she is happy to continue dumping meds into her. For me, surgery is a much better option and I have done a LOT of research on it and connected with many parents who have gone through it with their children. That's no guarantee of course, otherwise I would have done it by now.
I don't think a 25 day stay in hospital is a reason to avoid surgery. Colon cancer is not a joke and could lead to much worse. If it were me, I'd be having it out and thanking them for doing it.
I know you don't have cancer and of course hope you never do develop it and I guess your GI could offer you 6 monthly scopes for screening but there's no guarantee as they obviously can't' biopsy the whole colon. It's my understanding that this is a very slow growing cancer so you might be able to reverse it. It's a high risk game and only you can make that decision. I know a girl who had LGD at age 11 after being diagnosed at age 4. Her parents refused surgery (!) and she went into full and complete remission with cyclosporene and imuran for 13 years when she had to have surgery for a UC flare (not related to cancer). So, that's a "success". We all know of others who made the same choice with horrible results and who deeply regretted it.
Only you can decide what to do. But I don't think your GI is advising you incorrectly based on the findings. He would be liable if he didn't most likely. If you think you can beat LGD with LDN and slippery elm, more power to you. The boards are filled with miraculous cures.
Posted 3/11/2012 11:33 PM (GMT 0)

beatUC said...
ByeByeUC, my colon did look like hamburger meat, now it looks like a baby's bottom.
I agree that most people who have surgery do go through a lot of hell and make their decisions the best they can, my beef is with the doctors who, if it was THEIR colon, would hold off.
I can only go by my own experiences, and I was WAY past the point of surgery, and guess what, it got better.
You folks who have had surgery God bless you it's been a rough ride and to find relief is a great thing, but I just think the medical community is way off on this subject.

I said that a diet wouldn't help if your colon looks like hamburger meat. I believe you are on Imuran and I'm truly happy that your colon was healed by it. :)
Posted 3/12/2012 1:25 AM (GMT 0)
I am one of those people who had surgery before trying everything. My colon looked like hamburger meat one too many times than I was comfortable with, and I didn't want to take a chance on Remicade. I had the disease for 14 years, fought the good fight, then realized I had had it. I am glad I had surgery, but it is a long recovery. Still, I feel way better now than I did on my sick bed in the hospital three months ago.
Posted 3/12/2012 2:38 AM (GMT 0)
I didn't try anything either I was tired of losing against a colon, I wanted a win! I got one. Yep some people stay in a long time, a girl I knew was in 2 months after a csction!
I have no regrets, and I'm telling you this one week after surgery for an adhesion. Was that fun? No. But I told my surgeon I've had 5 painand drug free years, if this is what I have to deal with I will! Otherwise id have had 5 years of uc pain and drugs! So recovery and even surgery after the fact is worth it. And for the record anyone can get a twisted bowel or an adhesion.
As for lawsuits anything a dr does opens them up for law suits. That's why they tell you all the long scary stuff, even when you get a tooth pulled!
Posted 3/12/2012 3:14 AM (GMT 0)
Indeed doctors follow a protocol that somehow represents best practice consensus and keeps them in a comfort zone regarding others judging their decisions. The only beef I have with that is that in falling back to just that knowledge they miss the opportunity to learn from their own patient base. Two of the GIs that cared for my son over more than a year knew he went to surgery and never bothered to inquire about the outcome. I think knowing the outcome would have been valuable when other youngsters show up with a similar disease progression pattern.

One way that helped me decide on surgery was to realize that chances were very high that he would end up having surgery at some time, and in that case it is clear that for his age, the earlier the better.
Earlier means that we can do it in our terms, pick the place, the surgeon, know that I am there and bring along the support group of friends, do it while he has no job or family responsibilities, and most importantly reduce the time that is being stolen from youth by the disease and the shadow of the disease.

I even asked one of the GIs to consider surgery ahead of the usual protocol of medications, and he was very surprised and told me that he doesn't recommend prophylactic surgery, but he did agree with my point that today I can pick the best surgeon at a well known hospital and later on who knows.

And, yes he was close to 20 days in the hospital after the first surgery, it is not a walk in the park when little things go bad.

Yes, surgery may get better in 10 years, but you are 20 years old only once.
Posted 3/12/2012 1:03 PM (GMT 0)
My post was not meant to challenge those who have opted for surgery.
I sincerely hope it works out well for each of you.
Rather, I wanted to remind those are considering surgery as a "cure" to do some investigation.

When my GI first suggested surgery, I was very angry that he had not presented more than one option. There are 2 options - more frequent scoping or surgery.
My GI had suggested a consultation with a surgeon who removed colons. Was it likely she would advise against surgery?

I funneled that anger into action and spent 2 months reading every medical publication I could find as well as the AGA report upon which the recommendation was based. I also read numerous related posts on several websites.

I'm dissatisfied with a medical community that can't seem to get it together and at least mention possible alternative "paths" a patient might take to achieve wellness.
One thing I've found that my medical doctors have in common is that they push drugs. In my experience, little or no information is provided regarding side effects until after the script has been filled.
It is a rare doctor who does not appear to be "threatened" when a patient challenges a proposed course of treatment. I've met only 2 specialists, an oncologist and an orthopedic surgeon who told me that surgery should always be the last option.
I sadly think that the specter of lawsuits in the US (and the profit motive) has resulted in a medical system that does not act in the best interests of the patient.
Posted 3/12/2012 1:17 PM (GMT 0)
It is a rare doctor who does not appear to be "threatened" when a patient challenges a proposed course of treatment. I've met only 2 specialists, an oncologist and an orthopedic surgeon who told me that surgery should always be the last option.

I sadly think that the specter of lawsuits in the US (and the profit motive) has resulted in a medical system that does not act in the best interests of the patient.

I think we all reach that conclusion eventually. I would only add that I believe most of the alternative practitioners are just as ill-informed or greedy or both. You need to take charge of the disease yourself. I like how how somebody else puts it:

Imagardener2 said...
I look upon my GI as my Rx writer, colonoscopy-performer and bloodwork requester. Not putting her down but this is the way it is. She is smart, listens well but simply cannot fix my UC better than I can.

Posted 3/12/2012 1:51 PM (GMT 0)
"My post was not meant to challenge those who have opted for surgery.
I sincerely hope it works out well for each of you.
Rather, I wanted to remind those are considering surgery as a "cure" to do some investigation."

Upon investigating:
"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."
Posted 3/12/2012 1:52 PM (GMT 0)
Bottom line is that surgery is a personal choice.
Posted 3/12/2012 2:39 PM (GMT 0)

fruitgirl said...
Bottom line is that surgery is a personal choice.

Very true and there is no right or wrong answer. What's right for one person could be totally wrong for another and that goes with any treatment for UC as well.
Posted 3/12/2012 3:55 PM (GMT 0)
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.

 

I think you have to take this study with a grain of salt.  Surgical techniques have vastly improved since the start and end of the study.  I would assume the rate of complications has greatly decreased over the past 70 years.   

Posted 3/12/2012 11:15 PM (GMT 0)
ItsAlwaysSomething,

I couldn't agree with you more.

:-)  

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