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7 replies

surgery decision is it Crohns or UC

K kariAMember
hi,
diagnosed in 2001 as initially pancolitis UC including proctitis, then two doctors said it's crohns due to some skip areas/ patchiness and rectal sparing (although I was on meds and enemas), one of them saw cobblestone, CT showed thickening of bowel wall, and then on my 4th and 6th colonoscopies they saw granuloma ("vague granulomas" on 4th and one granuloma on 6th).

Since that discovery it's been 8 years, I had 8 other colonoscopies with several other doctors, including some Mayo doctors, none Saw granuloma, and the pathologies suggested UC.

I've taken mesalamines (may have led to pancreas problems), remicade with allergic response And not sure if its worked at all (years ago), aza/6mp which worked but cannot take anymore because it might cause pancreatitis (never did). Did diets, including SCD very religiously for three years, it helped symptoms but my sed rate was skyrocketing. Now on Simponi which worked only with prednisone over 10 or 7.5 mg.

Upper endoscopy in April 2014 showed slight inflammation in stomach and duodenum when I was having the pancreas problem ( with very elevated lipase and amylase). However, pathology did not find anything. Terminal ileum appeared normal in scopings.


Now my options are: entyvio, or surgery.
However, with me being in the indeterminate zone, is surgery even option?
I am tired of the medication and aware that I am running out of time, don't want to be on meds that are not working, don't want to be on prednisone anymore. So if surgery, is it only ileostomy or JPouch is also an option. The GI's office still believe I have UC and are talking about J Pouch. Has anyone been in similar situation?


Any thoughts will be appreciated..
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Scott FScott FMember
I just posted about this on another thread: "Many surgeons won't contruct a J-pouch if they think it's Crohn's disease. I had to shop around for a surgeon who would operate on me (surgeon shopping is usually a terrible idea). I've been very lucky so far, but the rate of complications and pouch failure is higher with Crohn's than UC."

J-pouches in folks with Crohn's (or possible Crohn's) work best if the disease has always stayed away from the small bowel and the peri-anal area. IMO you also have to understand the risk you're taking. Is there a good reason not to try the Entyvio first?
K ks1905Member
Both my surgeon and GI told me that they are much better now at determining UC/CD than they were 5-10 years ago, especially after they remove the colon and have the whole colon to examine.

If you decide to have surgery with the intention of having a J-pouch then I'd definitely suggest having a 3-step J-pouch than a 2-step so you could stop at the colectomy with the End Ileo if they found it to be CD.
P PluotMember
Would you rather have a permanent ileostomy than continue trying medical treatments? If the answer is yes, then I think it makes sense to proceed with surgery -- not because a j-pouch isn't an option for you, but if it turns out not to be, then you will end up with an ileostomy. If you're not comfortable with that yet, I would try Entyvio.
CTBarristerCTBarristerMember
When I had surgery in 1992 I had dysplasia in the colon and an unequivocal UC diagnosis. Regardless of diagnosis the colon had to come out, and my surgeon reported to me it was dissolving in his hands as he removed it, due to the inflammation of it.

I have had a J Pouch 22 years now, chronic pouchitis for 20 years, and in 2008 they discovered inflammation in my lower ileum, in a somewhat "irregular pattern." CT and MRI Enterographies revealed thickening of the bowel wall due to inflammation near the J Pouch inlet, which caused narrowing of the inlet. Although Crohn's was suspected, in the end my GI believed the inflammation in the neoterminal ileum was due to "backwash stool" and resultant bacterial overgrowth due to the narrowed J Pouch inlet. Sort of like a clogged pipe, except the clog was inflamed tissue.

Despite all of this, I am able to live a functional life with the J Pouch. I have had to change my diet and take a bunch of rotating antibiotics and probiotics and pentasa to keep this situation under control, but I would rather have this situation than an ileostomy. I think some progress has been made in the last 10 years as far as understanding bacterial overgrowth and the issues it causes, and I hold out hope that I will be able to stay on top of things and keep the pouch functional.
Last edited by CTBarrister
K kariAMember
thank you for your responses.

Met with surgeon today. he is advocating for Jpouch. he and GI's think its definitely UC, but what you said Rachel resonates with me.
Scott, why not try Entyvio. because it still only 50 percent max success rate and i dont know about side effects. In addition, for the first time my GIs have said "surgery" because of my situation.
Rachel, i have had 13 colonoscopies since 2001 and about 10 GIs doing those colonoscopies. i've heard so many explanations of why its UC or why its CD, that other GIs put holes into. Even from "world renouned" GIs. KS1905, i've asked today about perfecting diagnosis after colectomy from biopsying the colon and was told it may not provide an exact answer, it could be CD, or UC or whatever and then turn to be CD.
Pluot, i really dont know if i am ready to have an ileostomy.i've never had one and i anticipate a very difficult adjustment. i am VERY tired of medications and especially ones who are not working. with my colon and family hisotry (grandmother had colon cancer and colostomy afterwards) i know surgery is in the future.
CTBarrister: if you dont mind me asking why you'd rather take medications than have ileostomy. you can PM me if you'd like. You see, i can't even take mesalamine or 6mp/aza, remicade either, so i am trying to be in the few possible drugs situation.
i guess i'm just sick and tired of being sick and tired :-)
rachelravenrachelravenMember
Regardless of what I have in the "now," the decision for J pouch in 1991 was the best I had (and I am honestly and for the most part *still* happy with my mostly decent pouch function, overall). It gave me my life back, and 2 decades of nearly zero issue and no meds. Again, my pouch is good; it's the perianal issue that cropped up with some newer IBD stuff that put me back on the map with a GI doc. I didn't even HAVE a GI doc for 20 years after surgery, that's how good things were rolling!

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