Anyone had some doubt about UC or Crohn's before surgery?

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. 

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.

After being treated for UC for years, it’s only when my colon was removed 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.

As I’d not had a flare up since my colon was removed or taken any medication to control or prevent flare ups, 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, even just prior to my pre Admisions appointment; I came to the conclusion; what have I got to lose.

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

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

Since takedown in 2015, life with my J pouch is good, best decision I’ve ever made.

My new normal is no different to my life before UC; yeah, I use the toilet more, there's the odd accident and leakage but it’s nothing compared to what I had to endure with UC.

Thanks for everyone’s perspective and insight here. I guess it’s a good point in why not try the pouch. I would love to avoid a third surgery so maybe Ill just go for the pouch creation in step 1 even if there’s some doubt in my mind about my true diagnosis.