there is a guy in the jpouch FAcebook forum telling me that Shen is his GI and he told him that having a jpouch increases your risk of getting Crohns? What? Jpouch causes Crohns ? Lol. He said Shen published a report on this and in trying to get the link. Shen has been my GI for 8 years and I have never heard this from him or on this forum.
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He states that Shen told him jpouch is a cosmetic surgery and people risk their health for beauty. He stated the report is on PubMed and you need access to read it. Jan.??? Your thoughts on this?
Rather unusual thought...I have had a k pouch for 37+yrs (same surgery just different exit) and have followed all of the research, theories etc and have never heard that one...how reliable is this person? Have you ever heard that from any other source?
I generally take most of the info that I get off of the internet with a grain of salt until I get medical confirmation...So please do not panic!
Sharon
skn69 posted:Rather unusual thought...I have had a k pouch for 37+yrs (same surgery just different exit) and have followed all of the research, theories etc and have never heard that one...how reliable is this person? Have you ever heard that from any other source?
I generally take most of the info that I get off of the internet with a grain of salt until I get medical confirmation...So please do not panic!
Sharon
I don't know this person at all, and I am not panicked. It's just I have had Shen as my GI for 8 years and I know a lot of others on this forum have him as well and I have never heard him say this to me and I have never seen anyone on this site post that he has said it to them either.
I would go to the horse's mouth and ask...sometimes when people are in an appt with their doctor they sort of zone out in a state of semi-panic or fear.
We do not always hear strait.
(I just did the same thing with my surgeon pre-op, didn't hear half of what he told pre-op...then had to ask 20xs for the info because I was in a fear-bubble)
Could be that he is right or wrong..but I always require confirmation.
Sharon
Dr. Shen is correct. The J Pouch surgery cured me of UC but I did develop chronic pouchitis which is now viewed and diagnosed as Crohn's Disease. I got the J Pouch in 1992, inflammation started being seen in J Pouch 1995 and in the ileum above J Pouch in ileum in 2007. This was a new disease, Crohn's. It is different than the UC I had 1972-1992.
Unfortunately a lot of people are either led to believe, or naively believe that J Pouch surgery means they are done with IBD. Not true, and any notion that the surgery is curative of autoimmune disorder is simply scientifically fallacious. The autoimmune disorder is not addressed by surgery, any surgery. How it manifests in the future after surgery is totally unknown. My Crohn's developed after surgery and it was because I still have autoimmune disorder, which we are now treating, somewhat effectively, with Remicade and antibiotics.
I see a disturbing number of posts on this board which suggest that all of this is news to everyone. It really should not be. It tells me people are being misled, are not asking the right questions, are not doing the right research, or some combination of the 3.
Well, we know that some people develop Crohn's after J-pouch surgery. The rest is still getting figured out. It's best, I think, not to treat evolving understanding as settled science.
There is still so much more they just don't know. Countless people go on after j pouch surgery without a single issue. IBD is such a complex disease. I don't think they'll ever have the answers as why all these things happen to some people and nothing happens to others. For me (for the time being anyway) the j pouch procedure has most definitely been a cure.
Why do the doctors perform or even suggest surgery for jpouch then if it will manifest into a worse disease that is Crohns. If you have Crohns they won't do jpouch surgery, so I'm confused now. Where are they getting a 90%_95% jpouch success rate then? It's just hard to believe that my GI, Shen and my surgeon,Remzi that are two of the best have never mentioned this to me ever?? And I've been with Shen for over 8 years.
Well in my case even if they knew I would get Crohn's I still had to have surgery. The colon had dysplasia, it was severely inflamed and according to my surgeon it was dissolving in his hands when cut out. I would have had one of cancer or toxic megacolon had it remained. As far as getting a J Pouch, at the time they didn't see any inflammation in my ileum, so there was no reason not to do the J Pouch, and certainly no reason not to take the colon out. Then 12 years later I end up with Crohn's above the J Pouch. But, I still think the J Pouch was a net huge positive for me. It is chronically inflamed, yes, but my quality of life is better now than when I had UC. The Crohn's Disease does not cause me as much pain as the UC did. Also no blood. So even if I ended up with CD, I traded up in diseases. I was upgraded to a less painful and less debilitating inflammatory bowel disease.
I am trying to understand something here so please be tolerant with my naivety...
Basically if we make a parallel comparison from UC to osteoporosis, we are saying that if you have Osteopenia and shatter a leg, that amputating that leg will cure the Osteo...Which doesn't work. Obviously. But the amputation does not cause the Osteo either.
I have a K pouch, same pouch, different exit strategy as the J. We do not have the same problems at the same rate as J pouches...it is rare for the UC or other IBD related disease to devolve into Crohns with us...so it cannot be just a question of 'the creation' of a pouch...that is saying that the amputation causes the disease (which may well be true for all I know but still...it is a stretch)...it must be something else...the position of the pouch, the retention of stool in the pouch...
I am not saying that it cannot happen nor that it does not but I am wondering about the science here...how does it happen?
Sharon
I don't know for sure but it's a combination of the autoimmune disorder still being in your body and these man made pouches for stool storage which was not the intended function of ileal tissue. In some of us the autoimmune system accepts the new organ and in some because of the bacterial population it doesn't and the manifestation is pouchitis or Ctohn's Disease. But in my case I feel like it's a completely different disease than what I had in my colon because the symptoms are different. People ask me if I am upset because I was not told I had Crohn's at the time of my surgery. I tell them no because I didn't have it at the time of surgery and it came long after surgery. And that I still had to have surgery because of the condition the colon was in from UC. But I still feel as though the surgery was worthwhile and improved my quality of life from what it was when I had UC. And I have also felt that I have had two different chronic forms of inflammatory bowel disease.
Intellectually I understand it...but technically I have a problems with the expression 'man made pouch' because it isn't man made but 100% natural tissue that is being reassigned to a new function although, to be honest, not so new...it is still intestine, still being used to stock or store stool although in a different shape...
The autoimmune disease is part of most of our lives, some more so than others and some that have it reappear in some rather unusual ways (fibromyalgia, arthritis, migraines, allergies, Crohns...) that do not involve the G.I. tract.
When people ask me what kind of pouch I have and what it is made of I reply that it is made of 'Me' and it is just a storage unit with a new fangled exit.
(can't get too technical with most plebeians!)
So why is reassigning the intestine creating (stimulating?) Crohns? (no I am not being thick but I need to understand...that's how my brain works)
SInce my pouch creation (37 yrs old next month) I have developed killer allergies (anaphylaxis and other joys), chronic inflammation and sacroiliitis, chronic tendonitis and a dozen or so other fun games...
I get the connection...autoimmune is in the body not just the gut but I am still searching for the cause/effect.
Can we say that it would have happened anyway? That it was underlying? Or is it just a lottery thing that will hit X number of pouchers?
Sorry for being so long winded...
Sharon
To be fair, it's not uncommon for patients go to appointments and misunderstand and/or misconstrue what a doctor has told them. There is sometimes a disconnect in doctor-patient communication, either because the patient is emotional/scared, or frankly because some doctors just do a poor job of adjusting their explanation to individual patient level of understanding. So, I would look for a more academic explanation. That said, there is probably an element of truth in what Dr. Shen is saying. More and more, pouchitis is being viewed as another form of IBD. We all know that developing pouchitis is an inherent risk with the pouch, and that a pouch is not a "cure" for UC even though many patients seem to come away with the belief that it is. So yes, the risk of IBD remains even after surgery. As for the pouch causing Crohns - I would wonder if Dr. Shen meant that literally. Many patients have their diagnoses changed to Crohns after pouch surgery, but I would still think it somewhat questionable that the pouch itself actually causes Crohns; rather, the patient may have in fact had Crohns all along and was simply misdiagnosed, or else the disease simply manifested differently later on. The change in dx happens more often than many UC patients seem to realize. Also, science's understanding of IBD is continually evolving. Many doctors are now using IBD as a blanket term for both diseases- I've read things before that suggest UC and Crohns are more related than previously thought, flipsides of the same coin. So I wonder if what Shen really means is that there is always a risk of getting Crohns - not that the pouch actually caused it.
As for "risking health for beauty," that seems a silly statement for me. If j-pouches were truly only cosmetic, I would think that far fewer doctors would actually perform them. This isn't day surgery; it's a major procedure with risk of major complications, and it wouldn't be ethical to perform if it didn't have a proven medical benefit. I really wonder if this statement is meant to apply more to cases where a patient is really not a good candidate for a pouch, but insists on one anyway.
I'd be curious to see a more detailed explanation from him, if he ever offers it.
That said, I've had my pouch for over 8 years. I lived with an ileostomy for almost 3 years. Even with the bumps I've had along the way, I still would have done this surgery. I much happier with my quality of life now than I ever was with the ileostomy.
I would have been really pissed at my doctor if he had made a statement like that to me. The "risking health for beauty" statement. That's just ridiculous.
Spooky posted:To be fair, it's not uncommon for patients go to appointments and misunderstand and/or misconstrue what a doctor has told them. There is sometimes a disconnect in doctor-patient communication, either because the patient is emotional/scared, or frankly because some doctors just do a poor job of adjusting their explanation to individual patient level of understanding. So, I would look for a more academic explanation. That said, there is probably an element of truth in what Dr. Shen is saying. More and more, pouchitis is being viewed as another form of IBD. We all know that developing pouchitis is an inherent risk with the pouch, and that a pouch is not a "cure" for UC even though many patients seem to come away with the belief that it is. So yes, the risk of IBD remains even after surgery. As for the pouch causing Crohns - I would wonder if Dr. Shen meant that literally. Many patients have their diagnoses changed to Crohns after pouch surgery, but I would still think it somewhat questionable that the pouch itself actually causes Crohns; rather, the patient may have in fact had Crohns all along and was simply misdiagnosed, or else the disease simply manifested differently later on. The change in dx happens more often than many UC patients seem to realize. Also, science's understanding of IBD is continually evolving. Many doctors are now using IBD as a blanket term for both diseases- I've read things before that suggest UC and Crohns are more related than previously thought, flipsides of the same coin. So I wonder if what Shen really means is that there is always a risk of getting Crohns - not that the pouch actually caused it.
As for "risking health for beauty," that seems a silly statement for me. If j-pouches were truly only cosmetic, I would think that far fewer doctors would actually perform them. This isn't day surgery; it's a major procedure with risk of major complications, and it wouldn't be ethical to perform if it didn't have a proven medical benefit. I really wonder if this statement is meant to apply more to cases where a patient is really not a good candidate for a pouch, but insists on one anyway.
I'd be curious to see a more detailed explanation from him, if he ever offers it.
That said, I've had my pouch for over 8 years. I lived with an ileostomy for almost 3 years. Even with the bumps I've had along the way, I still would have done this surgery. I much happier with my quality of life now than I ever was with the ileostomy.
I agree with everything you have said Spooky... and yes, I doubt Shen would say beauty over health, I don't believe that came from him or any high ranking surgeon, especially at the Cleveland Clinic
curious to see Jan's thoughts on this
Pouchomarx posted:Spooky posted:To be fair, it's not uncommon for patients go to appointments and misunderstand and/or misconstrue what a doctor has told them. There is sometimes a disconnect in doctor-patient communication, either because the patient is emotional/scared, or frankly because some doctors just do a poor job of adjusting their explanation to individual patient level of understanding. So, I would look for a more academic explanation. That said, there is probably an element of truth in what Dr. Shen is saying. More and more, pouchitis is being viewed as another form of IBD. We all know that developing pouchitis is an inherent risk with the pouch, and that a pouch is not a "cure" for UC even though many patients seem to come away with the belief that it is. So yes, the risk of IBD remains even after surgery. As for the pouch causing Crohns - I would wonder if Dr. Shen meant that literally. Many patients have their diagnoses changed to Crohns after pouch surgery, but I would still think it somewhat questionable that the pouch itself actually causes Crohns; rather, the patient may have in fact had Crohns all along and was simply misdiagnosed, or else the disease simply manifested differently later on. The change in dx happens more often than many UC patients seem to realize. Also, science's understanding of IBD is continually evolving. Many doctors are now using IBD as a blanket term for both diseases- I've read things before that suggest UC and Crohns are more related than previously thought, flipsides of the same coin. So I wonder if what Shen really means is that there is always a risk of getting Crohns - not that the pouch actually caused it.
As for "risking health for beauty," that seems a silly statement for me. If j-pouches were truly only cosmetic, I would think that far fewer doctors would actually perform them. This isn't day surgery; it's a major procedure with risk of major complications, and it wouldn't be ethical to perform if it didn't have a proven medical benefit. I really wonder if this statement is meant to apply more to cases where a patient is really not a good candidate for a pouch, but insists on one anyway.
I'd be curious to see a more detailed explanation from him, if he ever offers it.
That said, I've had my pouch for over 8 years. I lived with an ileostomy for almost 3 years. Even with the bumps I've had along the way, I still would have done this surgery. I much happier with my quality of life now than I ever was with the ileostomy.
I agree with everything you have said Spooky... and yes, I doubt Shen would say beauty over health, I don't believe that came from him or any high ranking surgeon, especially at the Cleveland Clinic
curious to see Jan's thoughts on this
Yes. I would think it's even almost a dangerous opinion if he or any other doctor did actually say it, and meant it as stated. I mean, I would think a statement like that would open the door for thousands of malpractice suits (I'm sure most of the people on this forum could sue, myself included - what do you mean it was only cosmetic? No one ever told me that. I've had pouchitis, bleeding, obstructions... for nothing?) Like I said, the fundamental morals and ethics of medicine is "do no harm" and given the nature of j-pouch surgery, that is absolutely incongruent with saying the pouch is for cosmetic purposes only.
As I said, if something along those lines was spoken, reasonably, I would think it would be applicable to those patients who desperately want a pouch but are not good surgical candidates. But I doubt strongly such a comment was meant to apply to anyone who has ever had this surgery.
I'm also eager for Jan's 2 cents. 
Shen's statement of "beauty over health" refers to the alternative of having a permanent ileostomy. In my mind it is partly a cosmetic issue. The reality and facts of this cannot be denied. I recall when I had my J Pouch surgery in 1992 my doc referred me to another of his patients who was also a young guy in his 20s at the time. This guy told in shocking detail that while he had his temporary ileostomy he attempted to have sex with his girlfriend and his bag broke and the affluent splashed all over his girlfriend's abdomen and pubic area. She was so upset she broke up with him. He felt like it had ruined his life.
For me there were huge problems with the ileostomy that were cosmetic and comfort issues, leakages issues and skin issues. I take my J Pouch over the ileostomy any day for cosmetic reasons alone but the other reasons as well.
I'm not arguing that there aren't any cosmetic benefits to this surgery. Let's face it. I had my colon removed at age 27, and I would be lying if I didn't say that one of the reasons I wanted the surgery was to be rid of the bag and all the hassle that came with it - appearance and otherwise.
That said, my point was that to suggest this the surgery is 100% cosmetic and that you are risking your health by doing it, is inherently dangerous for the reasons I outlined.
CTBarrister posted:Shen's statement of "beauty over health" refers to the alternative of having a permanent ileostomy. In my mind it is partly a cosmetic issue. The reality and facts of this cannot be denied. I recall when I had my J Pouch surgery in 1992 my doc referred me to another of his patients who was also a young guy in his 20s at the time. This guy told in shocking detail that while he had his temporary ileostomy he attempted to have sex with his girlfriend and his bag broke and the affluent splashed all over his girlfriend's abdomen and pubic area. She was so upset she broke up with him. He felt like it had ruined his life.
For me there were huge problems with the ileostomy that were cosmetic and comfort issues, leakages issues and skin issues. I take my J Pouch over the ileostomy any day for cosmetic reasons alone but the other reasons as well.
Someone stated that Shen said that, I have no idea if that came out of his mouth or not , so careful..lol
Not so sure if a kidney transplant is a cosmetic procedure as compared to dialysis...or a lung transplant compared to living with an oxygen tank attached to a tube???!
Why when it concerns our guts people (and some smart people to boot) think that a k or j pouch is cosmetic when they would not for a moment think that for a lung or a kidney?
Just curious.
S
I've been away camping and not "plugged in" for a few days. I finally made it through this thread and gave it some thought and research.
I did a PubMed search for articles by Dr. Shen with key words of Crohn's and ileal pouch. There were no citations indicating a cause and effect. It was merely stated that there are some cases of denovo Crohn's disease following j-pouch surgery. This is nothing new. Whether this is a completely new disease or just the evolution of the existing IBD to manifest as Crohn's is unclear. Regardless, I would think the fellow making the statement regarding the j-pouch causing Crohn's misunderstood Dr. Shen, or made his own assumptions based on what he was told.
In regard to the "beauty over health" allegation, I think this is another example of exaggerating what was said. Dr. Shen could have likely said that colectomy with ileostomy is simpler and there is no pouchitis risk. Surgically, it is more cost effective. It is a perfectly adequate option. But the trade off is the cost of ostomy supplies and the imperfections of ostomy management.
Bottom line, much ado about nothing.
Jan
I head a top surgeon at UCLA speak a few years ago and he said that research is indicating that those with chronic pouchitis actually have Crohn's not UC. I think someone must have misunderstood what Dr. Shen said.
Sue 
I agree. I think I was alerted to the fact that I had UC, need it removed, but that there was a possibility I actually had Chrohn's Disease, and that having a jpouch could reveal that.
For the record and I cannot fear jinxing myself here, I am doing extremely well on my revised JPouch that Dr. Remzi did. I am normal! I am NOT BRAGGING, but it did not create Chrohns disease, for the record.
As to the thought that Jpouchers are just vain, I'm very dubious. In fact, when I had my three different ileostomies I think I accepted it better than my surgeons did!
suebear posted:I head a top surgeon at UCLA speak a few years ago and he said that research is indicating that those with chronic pouchitis actually have Crohn's not UC. I think someone must have misunderstood what Dr. Shen said.
Sue
isn't the characteristics of UC and Crohns very different under a microscope though? And doesn't Crohns ulcerate into the tissue much deeper than UC ?
aka KNKLHEAD posted:I agree. I think I was alerted to the fact that I had UC, need it removed, but that there was a possibility I actually had Chrohn's Disease, and that having a jpouch could reveal that.
For the record and I cannot fear jinxing myself here, I am doing extremely well on my revised JPouch that Dr. Remzi did. I am normal! I am NOT BRAGGING, but it did not create Chrohns disease, for the record.
As to the thought that Jpouchers are just vain, I'm very dubious. In fact, when I had my three different ileostomies I think I accepted it better than my surgeons did!
Did you hear Remzi is leaving for NYC? sucks
It is unsettling to hear about good doctors leaving CCF, it does suck. I did want to mention that there was some confusion by my doctor if I truly had UC or Crohns given my specific symptoms, and everything that was mentioned above in previous posts. I did take a blood test that my GI offered (I don't remember the name of it) and it supposedly indicates if one has UC, Crohns, indeterminate or both. It is expensive but my insurance did cover it. Not sure if anyone has taken it or knows of it. I know it is not 100% reliable - or at least that is what my surgeon said - but it gave me some peace of mind I was diagnosed correctly.
It's called Prometheus, and it's pointless and worthless and inconclusive and it is just a way for some pharmaceutical company and/or laboratory to make money off your health insurance carrier. It should not give you any peace of mind because it's not reliable, but more importantly, it's totally pointless, because regardless of what your correct diagnosis is, it has to be treated, and the treatment of all IBD is essentially the same, and, regardless of diagnosis (UC or Crohn's) there are untreatable inflammatory disease(s). So would you rather be treatable Crohn's or untreatable UC? This question alone shows how fruitless an enterprise it is and has become. In my case at least 15 pathologists have thrown their hands up in the air, because they don't know and it doesn't matter if they did, after Prometheus blood test, CT Enterography, MRI Enterography, numerous biopsies, numerous money and time and energy spent because, at the end of the day, guess what? Treatment is the same and either it works or it doesn't.
Ouch. I understand your point and agree with big pharma taking over our healthcare. However, in my situation it helped me. If it was wrong, I guess I will know down the road, but I am comfortable with my diagnosis and treatment(s). I did not mean to offend, it was something that helped me as I continued my road of treatment options.
Kara,
No offense taken, but I believe money should not be spent on making a correct diagnosis, because it really, really doesn't matter in the end once you are post-surgery.
The diagnosis does often matter, when it can be narrowed down with reasonable confidence. It affects surgery decisions, medication choices, and prognosis. It *sometimes* doesn't change anything, or can't really be determined, but that's not the same thing as it not mattering.
My GI is an IBD specialist.
He feels as many do that IBD is an "umbrella" of diseases, rather than a cut and dry UC vs Crohn's.
He also said as pouches mature, more issues can crop up. Such as my perianal fistula at year 22. I now have a "murky" dx of Crohn's to satisfy insurance to cover meds for me, but he does not feel it's as simple as that. A fistula soon after surgery is more likely structural; this late in the game, coupled with other symptoms I was having and an increased C reactive protein, more likely IBD caused. He said pathology on "old" pouches can read as "colon," as there is mutations of the bowel mucosa to become more like large bowel, too. Pretty interesting stuff. Pouchitis is likely something IBD driven: just look at the differences in rates of pouchitis between J pouches for IBD and J pouches for familial polypisis. Much, much higher in the IBD group.
He also never uses the word "cure" when speaking of a J pouch, and counsels all prospective patients that upwards of 50% will have *some* complication during the lifetime of the pouch. It is well known that some deterioration of the pouch happens one decade into its life, too.
My pouch behaves pretty well, and for 20 years, I never even had a GI doctor, believe it or not. It was a rock star. But at 22+ years, it's a little less straight-forward these days.
I am the typical person who has had questionable pouchitis vs. Crohn's J Pouch/ileal chronic inflammation for 10 plus years. Can someone explain to me how diagnosis matters even one iota in my treatment and prognosis?????? The goal is to keep the pouch, in every case, or you wouldn't have gotten one in the first place.
CT, the diagnosis doesn't play a significant role in your situation, partly because it can't be known with any reliability. The same is true for me. It does play a significant role in other situations.
For the benefit of everyone here is a quote from the pathologist's report with regard to my pouchoscopy on 6/20/16 and biopsies which I got a few days ago via email on the Yale Health Network:
"We note the long standing clinical history of ulcerative colitis status post subtotal colectomy with ileal pull through and ileal pouch. The patient suffers from antibiotic dependent pouchitis. The distinction between chronic pouchitis and Crohn's
disease is challenging and rests on the totality of clinical findings and evidence of inflammation in the ileum proximal to the pouch. The histology seen in today's biopsies includes extensive branching and features associated with chronicity. We are unable to provide a definite distinction between these two entities based on today's material."
It's the same conclusion reached by 15 different pathologists............
The diagnosis played a role for me in treatment and surgery. In my humble opinion, diagnosis can be important. But everyone has a different experience & thought. That is why we are all here- to share! Thanks to all of you-
