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Hi all, I was diagnosed with chronic pouchitis about 3+ years ago by a GI I trusted, after working with him for years, before and after my surgery. I moved about 2 years ago and started seeing a new GI. He is a local hotshot, and I was referred to him by my former, trusted GI. I started Entyvio for chronic pouchitis after doing the antibiotics merry-go-round for a year or more. My new GI has kept me on Entyvio, but even before he scoped me for the first time he told me he thought I have post-colectomy Crohn's, not chronic pouchitis. In some ways, it's semantics, since the treatment is the same, and I have suspected he said that partially to ensure I will continue to get insurance coverage for Entyvio. But for some reason, this really bothers me. Should I just go with it? It makes me uneasy, for a few different reasons. I value your opinions! Thanks

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@Karenchase posted:

Hi all, I was diagnosed with chronic pouchitis about 3+ years ago by a GI I trusted, after working with him for years, before and after my surgery. I moved about 2 years ago and started seeing a new GI. He is a local hotshot, and I was referred to him by my former, trusted GI. I started Entyvio for chronic pouchitis after doing the antibiotics merry-go-round for a year or more. My new GI has kept me on Entyvio, but even before he scoped me for the first time he told me he thought I have post-colectomy Crohn's, not chronic pouchitis. In some ways, it's semantics, since the treatment is the same, and I have suspected he said that partially to ensure I will continue to get insurance coverage for Entyvio. But for some reason, this really bothers me. Should I just go with it? It makes me uneasy, for a few different reasons. I value your opinions! Thanks

Hi Karen,

Have you contacted your previous GI to ask for a 2nd opinion on what the new GI is diagnosing you with? Since it’s making you uneasy, Maybe he can help.

Last edited by ytcrockpot

I think “post-colectomy Chron’s” is now called “Chron’s disease of the pouch”. My GI calls this “not Chron’s, but Chron’s-like”. He is the director of the Mt Sinai IBD research center in NYC, so he probably would know how much of this is semantics vs a true difference between Chron’s disease and Chron’s disease of the pouch.

You might find this link helpful:

https://www.crohnscolitisfound...cal-pearls/pouchitis

Last edited by Elif

@Karenchase Sometimes there are obvious cases of Crohn’s disease that develop after J-pouch surgery, and sometimes there are more ambiguous cases. I’ve been an ambiguous case since before my surgery, so I’ve gotten used to the idea that having an effective treatment is more valuable than having an absolutely certain diagnosis. The diagnostic categories can be useful, but they are very far from perfect, and they sometimes don’t properly describe what’s going on. Can you say why you are uneasy? Is the Entyvio working well?

@Karenchase posted:

I have post-colectomy Crohn's, not chronic pouchitis. In some ways, it's semantics, since the treatment is the same, and I have suspected he said that partially to ensure I will continue to get insurance coverage for Entyvio. But for some reason, this really bothers me. Should I just go with it? It makes me uneasy, for a few different reasons. I value your opinions! Thanks

You have correctly answered your own question. It is semantics as the treatments are exactly the same, and if your treatment is working, you just keep rolling with it and don't worry about semantics.

I also fall into this category of chronic pouchitis vs. Crohn's post colectomy. I am taking Remicade and am told if it stops working, which it hasn't, then I will be on Entyvio myself. My doctors- all of them, including my ex GI who was Bo Shen's protege- told me the same thing as what you were told. I can also provide you with some mechanical reasons why doctors grapple with the diagnosis.

Traditional Crohn's disease is inflammation in the ileum above the colon. Post colectomy Crohn's/ chronic pouchitis is different. Because the colon not being present is a factor in development of some of the inflammation. In my case they had been peeking into my ileum post colectomy for 15 years and never saw anything. At the 15 year mark, they determined there was some irregular inflammation in the neoterminal ileum and my J Pouch inlet was strictured. There is a mechanical reason for why this inflammation in this area develops.  It is due to backsplash stool- there is no backsplash valve in the J pouch as in the colon, so stool is continually back splashing back up into the ileum. This creates an inflammation pattern in the neoterminal ileum.

However, the inflammation in my neoterminal ileum was irregular enough that my doctors were uncertain whether all of it was due to backsplash stool, as opposed to the majority of it.

In the end though, it's inflammation and regardless of where it is and what you call it, it has to be treated.

For some odd reason there has been many "I have Crohn's and the Sky Is falling" type threads posted on this board through the years, that overlook these complexities in diagnosis as well as the fact that there is a bottom line - which is whether it's responsive to treatment or not regardless of what you label it. In your case I would really not worry about it, but if your inflammation pattern is like mine- which is extremely common in pouches that are 10-15 plus years old- keep an eye on scoping the inflammation every year and checking to see that the inlet doesn't get too strictured, which is the ultimate test on how well the treatment is working.

Last edited by CTBarrister

Thanks to everyone for your responses! Elif, the article does look very interesting -- I'll definitely look at it more deeply when I have some time. Scott and CTBarrister, thanks for your perspective.

When I was really sick with UC, before my surgery, my previous GI speculated for a time that I may in fact have Crohn's, and it really hit me hard. For years I clung to the idea that surgery would be the last resort option, and that would be off the table if I had Crohn's. And, in fact, the colectomy caused my health to do such a 180 (for a few years ), that my own belief that I did have UC all along was reinforced. I know people with Crohn's have such a tough time, I guess I feel like the road I've trod all these years has been hard enough, and I couldn't take it if I had to pivot like that.

I think I started feeling alarmed when my new GI suggested Entyvio is NOT working for me any longer, simply because it hasn't cleared up my inflammation entirely. After so many years living with this disease (in its various incarnations, pre- and post-surgery), and living in my body for half a century, it's hard for me to accept that a guy who has spent a total of less than 60 minutes with me has the authority to tell me which medication is or isn't working. I believe, based on my previous experience of both symptoms and attempts to treat them, that Entyvio IS working. But, I guess that's how it works. After my last scope (done by a different doctor, FWIW), they decided I can stay on Entyvio for now, but I'll be meeting with my GI again in January.

Again, thanks to everyone for reading and responding. Happy holidays to all of you.

Karen

Karen, Remicade hasn't cleared up my inflammation entirely either. The inflammation at my J pouch inlet and in the ileum is more resistant and it's likely because of the mechanical issue I mentioned.

The goal of biologics isn't necessarily to clear up the inflammation entirely, and in many cases it doesn't. The goal is to keep it "in check", so that you can have a good quality of life and no symptoms.

Last edited by CTBarrister

Karen, I think you have provided your own insight. Many of us wanted to believe that colectomy was the “cure” for UC. Unfortunately, IBD is a spectrum with many overlapping signs and symptoms. My last reading on the topic concluded that chronic pouchitis may be a new and distinct form of IBD brought on by the absence of the colon as a target organ. The sad truth is that autoimmune disease is for life. You can manage it. It can go into remission. But, it is always there.

I think you are accepting this truth now.

For myself, I am grateful to be living in a time with treatments and new ones are being developed all the time. Sure, a cure would be nice, just not realistic.

Jan

@Karenchase posted:

Thanks to everyone for your responses! Elif, the article does look very interesting -- I'll definitely look at it more deeply when I have some time. Scott and CTBarrister, thanks for your perspective.

When I was really sick with UC, before my surgery, my previous GI speculated for a time that I may in fact have Crohn's, and it really hit me hard. For years I clung to the idea that surgery would be the last resort option, and that would be off the table if I had Crohn's. And, in fact, the colectomy caused my health to do such a 180 (for a few years ), that my own belief that I did have UC all along was reinforced. I know people with Crohn's have such a tough time, I guess I feel like the road I've trod all these years has been hard enough, and I couldn't take it if I had to pivot like that.

I think I started feeling alarmed when my new GI suggested Entyvio is NOT working for me any longer, simply because it hasn't cleared up my inflammation entirely. After so many years living with this disease (in its various incarnations, pre- and post-surgery), and living in my body for half a century, it's hard for me to accept that a guy who has spent a total of less than 60 minutes with me has the authority to tell me which medication is or isn't working. I believe, based on my previous experience of both symptoms and attempts to treat them, that Entyvio IS working. But, I guess that's how it works. After my last scope (done by a different doctor, FWIW), they decided I can stay on Entyvio for now, but I'll be meeting with my GI again in January.

Again, thanks to everyone for reading and responding. Happy holidays to all of you.

Karen

You are welcome Karen, anytime

Happy Holidays to you too

I am like most of you having to deal with Chronic Ileitis.  I have had pouchitus before and successfully treated it and no problems now.  I should start by saying I have had my j-pouch for 18 years.  I have had several adhesion removal surgeries and 2 resections of the small intestine.  My recent routine pouch scope however showed all is well except for my ileum being very inflamed, leading my doctor to think I have developed crohns .  He ordered and IBD panel blood test and I tested negative for both UC antibodies and Crohns antibodies but did test positive for P- ANCA.  I have never heard of that.  My doctor is sending me to a specialist in immunology and I just know they are probably going to start discussing biologics.   I am currently takin a steroid to help with the inflammation but want to get off it asap.  I have had several blockages recently and doc says it is because of the opening to my jpouch being stricture and inflamed.  I don't know what to do.  I haven't seen the new doctor yet but should get it to him soon.  Has anyone else had anything similar happen or have any information on P ANCA.  I forgot also I have recently became very anemic.  That is actually the only thing that is making me feel bad.  Any thoughts or advice would be helpful



Thanks

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