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I have read of a number of people on this forum who were originally diagnosed with ulcerative colitis, underwent J-pouch surgery and then were told months or years later that they actually had Crohn's all along and not UC.

However, virtually nobody here ever utters the word malpractice. Why is that?
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There is no 100% guarantee when diagnosed with IBD that's it's definitely UC. There is still so much more doctors do not know and understand about it. All they can do is come to the best possible conclusion either way...UC or CD....by how the symptoms present themselves and how the labs and test results (scopes with biopsies) turn out.
Last edited by mgmt10
quote:
However, virtually nobody here ever utters the word malpractice. Why is that?


Because there are more subsets of IBD than there are labels for the medical community to slap on them. And also the misdiagnosis may not matter if the proper treatment is prescribed. In many cases the same treatments are prescribed regardless of the diagnosis, based on the symptoms. If the same treatment would have been prescribed regardless of the diagnosis, there are no legally provable damages. It is not malpractice, it is just failure to respond to treatment indicated by the symptoms regardless of what it is called. There is not a legal remedy for everything that goes wrong.

My own diagnosis is officially unknown at this time. But I respond to treatment so it does not matter and as I indicated in another thread, it is a colossal waste of time, energy and money to worry about correct diagnosis when the treatments for the symptoms of pouch IBD are essentially the same. I do not understand this colossal waste of energy. It puts labels that everyone knows are highly artificial and not based on scientific realities before common sense and problem solving.

I would suggest you read this thread:

http://j-pouch.org/eve/forums/...987007276#9987007276
quote:
As I mentioned previously, I don't know if the diagnosis is particularly important when the treatments are going to be the same regardless of how the inflammation is characterized. What is most important is finding a treatment that controls the symptoms and the inflammation. If nothing else is working, people with either Crohn's or chronic pouchitis all end up taking biologics, so in the final analysis, the diagnosis is kind of irrelevant.


I did read this thread and that is what prompted my question.

Thing is you're comparing the treatment for chronic pouchitis versus the treatment for Crohn's and saying since they are identical what's the difference. But I (and you I think) were originally diagnosed with having ulcerative colitis. It was known in 1995 that removal of the colon was not the right treatment for Crohn's, as the disease would just manifest in another area of the digestive tract. So I had three feet worth of large intestine removed. For years now, my doc (not my original GI) has been saying that he thinks I have Crohn's and has been treating me as such and I've been responding to the treatment.

So, you're an attorney and you don't think this is actionable. But suppose you had a loved one who was diagnosed with breast cancer and had a mastectomy as treatment for it. Then after doing the biopsy it was discovered that the lump she had was merely a cyst and that the surgery was never needed after all. Would you just say oh well, no harm no foul, at least they got rid of the cyst?
Yes I agree with Suebear, the hypothetical you mentioned with breast cancer is not really comparable.

They have done 3 diagnostic tests on me - Prometheus, CT Enterography, MRI Enterography - and are still not certain of my diagnosis. My Prometheus Test came back negative for Crohn's and UC. Does this mean that the inflammation that is visible in my pouch and lower ileum is being caused by aliens? I don't think so. It is a subset of IBD without a label, called "inflammation due to SIBO that spilled into the lower ileum." That is what I think anyway.

There isn't a lawsuit to correct everything in life. Sometimes doctors do their best and cannot achieve a correct diagnosis. As I mentioned earlier the treatments for pouch inflammation are largely the same regardless of what you call it. As far as the decision to remove bowel, consider the alternative which is to keep inflammation-riddled bowel. If it is truly Crohn's it may need to come out anyway. Maybe they would not do a J Pouch but the surgery to remove bowel may still be necessary. And a J Pouch can always be converted to an ileostomy later. So if the diagnosis is not certain there does not seem much harm in trying, if bowel has to come out anyway.
quote:
The breast cancer comparison doesn't work; there are tests for breast cancer that rule out a benign cyst. As mentioned on this thread; there is no definitive test to rule out Crohn's disease.

I am aware that there are tests for breast cancer. Obviously you wouldn't choose to perform surgery to treat a malady without first confirming that the malady exists.
Enter ulcerative colitis. If there are no tests that can rule in or out ulcerative colitis than how could it be ethical to perform a total colectomy on the hypothesis that the patient has UC and not CD?
quote:
how could it be ethical to perform a total colectomy on the hypothesis that the patient has UC and not CD?


In my case it was not a question of ethics- the colon was dissolving when it came out. It is not a questions of ethics, it is a question of what the entire body of medical knowledge is in a particular case. You are coming to this question with apparently simplistic, black and white views of the issue and it simply is not looked at in that way by competent medical professionals. The applicable standard of care requires that a doctor make a recommendation based on the entire medical picture, of which the operative diagnosis is just one part of that picture. Ultimately, it is a patient's decision to have surgery or not. Based on what was discovered after my colectomy, a toxic megacolon would have resulted in my very near future had I not had the surgery. This is totally apart from the issue of whether I had or have UC, Crohn's or some other species of IBD. If I did not have the surgery, I would have likely needed emergency surgery for a toxic megacolon, a surgery which I possibly might not have lived through.

I really don't understand your post- it seems to believe that surgery should only happen if there is a proper, unassailable diagnosis, something that is not attainable, and would create a standard that would result in nobody ever having surgery. Do you want people to stop having surgery and start dying because of it?
Last edited by CTBarrister
Almost all the time, when you get to the point of needing a colectomy, you NEED a colectomy; you've either failed medical treatment, or you're now at risk for perforation/mega-colon, etc. because your colon is so inflamed. (My colon was so diseased, when he took it out, it was friable.)

More and more, GI docs are looking at IBD as an "umbrella" of autoimmune diseases, not just a) ulcerative colitis and b) Crohn's.

I had a run of 20+ great years with my pouch, and the past two years have been a lot of ups and downs.

I fit a lot of new IBD type pouch symptoms at this time, so now my GI does want to try me on Humira to see if we can fix things. I still don't have the "perfect" Crohn's picture in my pouch, in fact, my pouch itself looks pretty ok, but for some aphthous ulcers, but I stricture at the anastomosis exit now, I have a perianal fistula, I now have a + C-reactive protein, I run off and on low-grade fevers, I occasionally have runs of tenesmus and urgency, and my anal canal feels "swollen" all the time, with a new bumpy area on the left that hurts off and on.

It's like having "colitis light," I call it. Definitely not as bad as it was for me with the pan-colitis at the end of my colon's run, but certainly not the same as it was for me 10 years ago.

Would I go back and call my surgeon out for "malpractice" for giving me a pouch, and these things happening to me? Certainly not. It was a great option. Of course, 23 years ago (almost 24 now) the surgery didn't have the long-term run it's had as of now (30ish years or so; it was only a bit over a decade old when I had it done). Things are happening to people who have pouches for many years, it seems... you can take the colon out of the girl, but you can't take my genetics away.

My GI counsels people who are having J pouch surgery very seriously now. He said, yes, 20 years ago, they said you were "cured." No longer. He tells people that it's a 50/50 chance you might have a problem at some point in your life with your pouch.
quote:
More and more, GI docs are looking at IBD as an "umbrella" of autoimmune diseases, not just a) ulcerative colitis and b) Crohn's.


This is true- the belief is that there are far more subsets of IBD that exist beyond the dated, and somewhat arbitrary 2 disease classification system. In fact you might even have trouble getting a malpractice opinion in many cases because of this. It is the law in Connecticut that no malpractice case can be brought unless a competent professional in the field (in this case, likely a gastroenterologist or colorectal surgeon) has certified in a "good faith" opinion that malpractice has likely occurred. If the claimed malpractice is failure to diagnose CD, it is going to be very hard to even get out of the gate with that theory and no lawyer is likely to pursue a case on that theory. It could be surgery was not indicated for other reasons or based on the full picture- that is the opinion that a malpractice attorney would look for.
Last edited by CTBarrister
Medicine is not a perfect science.
And doctors are not God.
I had a dozen different diagnosis over the teen years...in the end it did not matter: IBD, UC, Hershsprung's disease...(never Crohns)...in the long run...I wanted my colon out NOW!
I couldn't stand it any more. The pain, cramps, bleeding diarrhea, fevers and incontenence...life was hell.
If I could have yanked the darned thing out myself I would have.
Instead I accepted a k pouch that offered no long term options, no promises or garantees...just a few blessed months of possible peace.
I got 20 good years (minus the 2 extra surgeries because my body doesn't heal)...then all hell broke loose...Did I blame the doctor? NO...I blamed my body.
I have had a dozen extra surgeries since then, some complete failures, some moderate successes but all of them were one way or another my choice.
I could have screamed stop at any time and had them yank the pouch and give me an end ileo but that is not what I wanted.
I may have had a dzn reasons to call for a lawyer and sue but I had one good reason not to...I need them more than they need me...and that matters more than anything else...and I believe that most doctors do their best to help us get and stay healthy.
Just my personal opinion
Sharon
Our 1st surgeon left behind 7cm of rectal tissue that should have been removed. He is considered one of the best pouch surgeons outside of Mayo and CC. The result from the surgery was horrible.

However.....there is NO way any legal action could be taken. The surgeon could never be proved to have done anything that is negligent or below a normal level of "standard of care". We are not talking about diagnosing cancer or removing your left toe. We are talking about an incredibly complicated clinical picture and EXTREMLEY challenging surgeries. Most surgeons would look at the original work on my wife and be amazed by the pouch creation and would never even think that an extra 5cm of rectal tissue could create a non-tenable quality of life.

Poor results suck, but they are completely separate from malpractice....

Dan
I think one that is being missed is the fact that colectomy is absolutely appropriate for Crohn's in the presence of Crohn's colitis. Not in all cases, but in some, depending on medical resonse, same as UC. The controversy is the appropriateness of the j-pouch procedure. It is not that uncommon for Crohn's not to fully manifest before colectomy. Surgeon's work with the best available knowledge and technology at their disposal at the time.

Being wrong is not the same as malpractice. NOT recommending colectomy when it is medically indicated is more likely to trigger a negligence or malpractice claim.

Jan Smiler

I personally have thought often to the ‘whys’ a total colectomy was performed on a child diagnosed then with colitis, only to be diagnosed months later with Crohn’s.   Her quality of life has changed, the drugs she’s on will inevitably shorten her life , meanwhile some of these drugs make her more sick than helping her. 

In our case it was a sudden onset of health issues;  9 years later I have never seen the evidence the colectomy was needed as in “life or death “ hemorrhage.  I was scared and bullied in to being told “ she would bleed to death” if I did not sign for surgery.    I do believe the 3rd dose of remicade is what pushed her health over.   

Today..... I do question if the surgery saved her life or if the misdiagnose shortened her life and created to this day; daily struggles of chronic illness which creates severe isolation and loneliness.   

It’s been a struggle and is very sad.   We love our GI who does have her back to date, but my now 18 year old is contemplating why they did what they did..... as she studies her charts, asks questions, and attempts to make sense of why they yanked out something that highiy impacts  how her body works.  

Yes, doctors.... We understand her small intestine will take over the functions of her large, but what if it doesn’t?  What if her body now can’t absorb and function like it’s suppose too?    There are no answers to these type of questions.  Kids/young adults are just left wondering what their quality of life will be.   IBD is clearly not understood but the answer is NOT cutting things out in-full, which are needed for our body to function  

Soon, I’d guess my daughter will be asking more questions as she dives in to college with a lot of health related questions on how a total colectomy affects her body functions and immune system.  

If I had to guess, yes I do see a lot of malpractice suits popping up regarding total colectomy from 2005-2015.   In our 9 years of watching how this disease has evolved, it no longer appears a total colectomy is  the answer the doctors are choosing as easily    It would be interesting to see how many total colectomy were done on our children from years 2015-current; versus previous years.  

 

Colectomies are not being done as much not because of any fear of malpractice suits, but because treatments have improved for ulcerative colitis.  Remicade did not exist when I had my colectomy in 1992.  The only option at that time was Imuran, which has way more side effects than any of the new breed of biologics.  Just in the last month, one of my coworkers who has UC went on Remicade.  I suspect if Remicade had been around when I had my colectomy, I might never have needed one.

That being said, colectomy saved my life.  And I say that despite the fact that my diagnosis also changed.  I am of the opinion that diagnosis does not matter and what does matter is whether the inflammation can be controlled or not.  The "ulcerative colitis" that I had pre-colectomy was much less treatable than the Crohn's that I do have post-colectomy.

I am also an insurance defense attorney by trade and although I don't defend malpractice suits for a living, I would be very confident defending the kinds of suits suggested by this thread. I can think of a number of medical experts I know personally and who have treated me over the years who could testify forcefully that any misdiagnosis was not malpractice due to the fact that what manifested after surgery was a different illness, not the same one that was addressed in surgery.  That's what I feel happened in my case. When you take the colon out you have a new digestive system, a new set of flora and fauna and a new immunoresponse to the newly reconstructed bowel.  This is not hard to understand, it is fundamental biology and human anatomy. SIBO that happens after surgery never ever would have happened prior to surgery.  Your entire bacterial balance is changed by surgery in a way that is not predictable in any individual case.  What manifests as Crohn's after surgery is NOT the same disease you had before surgery, period and end of story, and this is provable in Court through medical experts.

Outcomes depend on response to treatment.  It is inflammatory bowel diseases and inflammation, regardless of what you label it.  Either it can be treated effectively or not.  If it can't be treated effectively the surgery may not have been the causal factor in that outcome.  The causal factor is the patient's response to treatment of the disease process.  Anything beyond that is finger pointing and playing the blame game for a bad outcome.  I personally would focus on finding a better doctor and not a better malpractice attorney.

Last edited by CTBarrister

CTBarrister,

My doc told me I had ulcerative colitis and needed to have a colectomy or I would likely die. Turns out oops, he was wrong. I certainly wouldn't trust him if he told me a story about my colon dissolving before his very eyes upon removal. But kudos to you for undergoing your procedure under local anesthesia so you could see it for yourself.

I didn’t have local anesthesia. My surgeon told me my colon was dissolving when he removed it and I believed him. All the testing I had prior to that suggested the UC was no longer treatable- also had dyplasia and the inflammation was throughout the colon. This is not fiction, it is fact, and it’s offensive to suggest that my doctor would have made something up. Everything else I posted here was based on my history, my scopes and my knowledge of the disease process and the law. BTW my surgeon at the time was the leading colorectal surgeon in the nation and had done thousands of colectomies. He explained all of the risks of the procedure to me.

Have you reviewed the pathology report or the photos on your last scope pre-colectomy?  What did it say or show? As Jan mentioned above, depending on those findings, there might be a better malpractice case for not doing surgery than doing it, and that will be the defense of any malpractice case if you had scope findings that warranted colectomy.  The diagnosis is actually irrelevant; all that matters was the pre-surgical condition of the colon.

Anyway the bottom line is there are not going to be malpractices cases if attorneys will not take them. Apart from science not really supporting the action for reasons I have stated above, malpractice cases cost a lot of money to prosecute. Some firms will advance those costs on a risky case and some will ask the client to put their money where their mouth is. That’s just economic reality. In Connecticut you need the good faith opinion from an expert (which will cost in the thousands of dollars) before you can even take a malpractice case into court, and it might be difficult to get one. Like I said above the post-colectomy disease process is different than the pre-colectomy disease process.  So the “having Crohn’s all along” statement In your initial post isn’t necessarily actually correct. As a matter of science. It’s what I have gathered from speaking to a number of medical experts on the issue. The disease process is not necessarily going to be cured by surgery because autoimmune disorder can’t be taken out of your body and it can manifest as a different disease process after surgery. All patients should be told this - if you were not then an informed consent issue could be a basis for a malpractice claim but most doctors have forms that get signed on informed consent.

i have Crohn’s Disease now. It’s a different disease than the UC I had. It’s more treatable. I traded up in diseases because I had the surgery. It’s partly because better treatments exist now than when I had UC.  But it’s also a different disease. The symptoms and issues are different. It’s not the “same” Disease I had before surgery.

Last edited by CTBarrister

 My orig reply was commenting to someone’s shared thought; Not stirring up  someone else’s emotions or asking for an debate. Every single person is different and we all make mistakes, even doctors.  To criticize anyone on this forum for sharing their thoughts and emotions Is not necessary .   Total colectomies have decreased due to better meds available “and” doctors are treating IBD differently due to new knowledge, education and research.  - ctbarrister- at no time did I say  total colectomies hv decreased due to fear of malpractice.  twisting words is a talent of another profession  

Every person/illness is unique....and  some doctors are more experienced than others.  We are human and with that mistakes happen..... If someone chooses to go to court , that is their choice.  There  are families out there that have gone this route and won; as I said prior however- every single person is unique. IBD is not the same for every single person, nor are the doctors treating them. 

I am sorry for the pain And loss of those families who have endured unfortunate mistakes....  whether forgiveness, or hate.... court or no court.... Crohn’s disease sucks and my heart goes out to all this ppl affected.... and Especially our children who take this on before their life even gets a chance to start.

Chronic illness should be a team effort. There is already enough pain that goes in to IBD... let’s not add to it any further by responding to this post.   Let’s just agree to disagree  

 

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