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Here's my story and current predicament:

I’ve had IBD for 23 years and finally scheduled surgery for next week. The interesting part of my story is my first doctor classified me as Crohn’s and my second doctor has me now classified as UC. There are obviously much different surgical results based on what I truly have. I've never had inflammation in the small bowel and it seems to follow the standard UC pattern of more severe inflammation starting in the rectum and diminishing as it goes along. But I do seem to have some more typical Crohn's manifestations mainly not so much rectal bleeding and clubbing of the fingers. Along with more typical UC findings of pseudopolyps, and never any fistulas, fissures, strictures or abscesses, cobble-stoning.

I have an experienced surgeon who knew about my previous Crohn's diagnosis and he was all set for the two stage surgery where he builds the pouch in stage 1 and it wasn't until I brought up how I had some doubt about it truly being UC where he said we could go the three stage route and use the pathology of the colon after stage 1 to determine the next step. What's interesting is he said if we did the two stage and the pathology showed Crohn's he would still connect the jpouch since it had already been made. I know some specialized centers allow special cases of Crohn's disease (no small bowel or perianal disease) to try for a jpouch and I think I would have sought them out anyway if I was told I wasn't a jpouch candidate by my current hospital.

But anyway he left the ultimate decision up to me and gave me up to the day of the surgery to decide which route to take. I would love to avoid three surgeries and since I had the idea of trying the pouch even if it was Crohn's, I think I might have a unique opportunity here if I go with two surgeries. On the other hand I heard having a pouch when it is actually a Crohn's diagnosis can be hell.

Sorry for the length of this but I was just wondering if anyone else was faced with a similar predicament and what they chose to do.

Original Post

I was faced with a similar situation. In my case they couldn’t make a definitive diagnosis even when the pathologists were given my entire colon to examine. I went with a *one* stage procedure, and I’ve been fortunate enough to never have reason to regret it. I went through a similar line of thinking as you are describing, wanting to try the pouch even though it had a higher risk of failure than in clear UC cases. I was turned down by two surgeons, which was a bit of a nuisance. Pouch failure can be pretty nasty, but it all goes better if you have a good gastroenterologist, and you stay engaged in actively dealing with any issues that arise. Good luck!

Hi, thanks for the reply with your experience and am glad you've had a good experience with the jpouch. It gives me hope as well.

The slight difference in my case I guess is that my current GI doctor has 100% diagnosed it as UC with no doubt in his mind and my surgeon doesn't do jpouches on any Crohn's patients so it seems to me like he has a strong suspicion it's UC as well. 

My doubt comes from my previous GI doctor who was more of an IBD specialist and 100% diagnosed it as Crohn's disease basically because I didn't bleed enough for it to be UC in his opinion even though I was always anemic. Interestingly, that doctor didn't do any of the colonoscopies himself and relied on reading the reports whereas my current doc who says it is UC has done five scopes all himself on me which makes me think he has a better view of things but isn't a strictly IBD doctor. 

So basically it is indeterminate colitis in my mind due to my two different diagnoses at varying points in time even though medically I'm currently classified as UC.  As you can tell I'm an chronic overthinker and it kills me but am leaning toward the two stage at the moment because it seems a lot less daunting than three surgeries and I don't think my surgeon would do it if he didn't have good suspicion that it is UC.

It’s common for doctors to be overconfident in their diagnoses, even when faced with conflicting information. The one I would trust the least is the guy who doesn’t do his own colonoscopies - he simply put too much faith in “not bleeding enough,” which suggests he doesn’t understand probabilities very well. So I think you most likely have UC, based on what you have reported, with Indeterminate IBD a reasonable alternative theory. FWIW I read the literature on J-pouches for Indeterminate IBD before my surgery, and my interpretation was that it’s a very reasonable choice for a well-informed person with appropriate expectations. Note that the Mayo Clinic folks don’t agree with my interpretation.

Obviously I picked the smallest number of surgeries I could get away with, but my surgeon warned me that the total number of hospital days would likely be about the same with the fewer surgeries option (i.e. tougher, longer recoveries from the fewer, more extensive surgeries).

Doctors attempt to project confidence in their diagnoses in order to maintain the patient’s confidence in them. I do the same thing with my clients, if they don’t think I am confident in the advice I am giving, what are they paying me for?

That being said, IBD diagnosis is a tricky business and at the end of the day it really doesn’t matter. Whether it’s UC, Crohn’s, or Chronic Refractory Pouchitis (and I have carried all 3 diagnoses at one time), ultimately all that matters is response to treatment, which in most cases is the same for all forms of inflammatory IBD. Would you rather have very treatable Crohn’s Disease, or completely untreatable UC? Ultimately it does make some difference in surgical planning, but you could have a UC diagnosis that is “100% and you can take that to the bank dude!”, have surgery and end up with Crohn’s in your ileum 15 years later. That’s me! But after 47 years with IBD I am still doing OK at age 56. The bottom line is I have been able to treat it, live with it and get by. It’s not always perfect but I stay on top of it and try to do the right things to keep it at bay. And that’s all you can do. 

Last edited by CTBarrister

I never had doubt myself; I hated the colostomy bag, that alone was enough to desire a j pouch, although until finding this forum I didn’t even know what a j pouch was; as when discussed with my Doctors and Consultant, it was always referred to as reconnection and nothing more.

however, after being treated for UC for 12 years, it’s only when my colon was removed during 2005 was my Crohns diagnosis made.

After such a diagnosis I was bluntly told, reconnection is no longer an option, due to its high failure rates and that was it; still no mention of a j pouch.

However, after 8 years with the use of the colostomy bag, I enquired with my Consultants Registrar in regard to a J pouch, which resulted in my colon pathology results from 2005 being re-examined. 

As I’d not experienced a flare up since my colon was removed in 2005, nor taken any medication to control or prevent a flare up, whether Crohns or Colitis, a new diagnosis of “Indeterminate” Colitis was made.

 My new diagnosis lead to J Pouch Surgery and although I was in two minds for a long time and even just prior to my pre Admisions appointment; I came to the conclusion; what have I got to lose.

Not going through with surgery and I would never know what the outcome would be and if it failed, then I’m back to the colostomy bag, which although I hated it, it wasn’t so bad.

I never even considered the surgery required to removed a failed pouch, it just wasn’t a thought.

Since takedown during Jan 2015, life with my j pouch couldn’t be better, life’s wonderful; it’s the best decision I’ve ever made.

My new normal is no different to my life before the onset of UC; yeah, I use the toilet more than I did then but it’s hardly noticeable and it doesn’t impede on my day to day activities.

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