Another opinion re Crohn's diagnosis after chronic pouchitis

Your diagnosis has nothing to do with it.  Biological drugs would also be used if you had "severe pouchitis" or choose your other label for the inflammation.  All the treatments are the same when the inflammation is not well controlled.  You were tried on the correct drugs.  There are others: Remicade, Stelara, etc.  Hopefully you will respond to treatment.  If you have had the J Pouch for 17 years and managed to fight chronic pouchitis it is a sign you can continue to do so.  Are you still taking antibiotics with the Entyvio?  The Entyvio can take a while to work.  In my case with Remicade it was some months before there was results.  If your inflammation got much worse, it could take a while.

As far as getting a second opinion, you are always free to, but you need to bring your scope reports and pics to get a meaningful opinion.  The treatments for the inflammation you have are generally antibiotics first, then Entocort, then biological drugs.  It's not really rocket science.  It is how your body responds to the treatments.

I am still rotating Cipro and Xifaxan 2 weeks each, and have been for 16 years.    I've tried 6-7 other antibiotics over the years with either no improvement or allergic reaction (e.g. Flagyl, which gave me the best 24 hours of the 16 years, right up to the full body hives).  I am also still taking the Entocort, 3 per day.  Plus added Canassa.  Nothing ever really helped my chronic pouchitis much, I just lived with it. My best days were always 8-10 times per day in the bathroom.  Worst days added butt burn and bm's up to 12-14x per day. 

My GI said that since the Humira did not work he didn't want to try Remicade because it is another tnf blocker, same as Humira.  I'm wondering if either CC or Mayo would see something or recommend something that my GI does not know of.

ColoradoGuy,

I suppose it is possible that CC or Mayo might know of some new treatments. I believe strongly in the “nothing ventured, nothing gained” philosophy in treating IBD. And there are newer biological drugs and other treatments constantly coming into the market. So I would say go for it. My attitude in treating my own chronic inflammation has been the same as yours- save the Pouch at all costs, pull out all the stops, and dread the thought of a ileostomy. It was also hell for me when I had it, for 3 months. 

This stinks, of course. OTOH It sounds like your doc is basically doing the right things, maximizing treatment and trying new things when you encounter failure. If Entyvio fails you could still try Stelara and/or Xeljanz, which have different mechanisms of action. I found that combining antibiotics worked well for me when one failed - in my case Cipro + Flagyl, even though Flagyl alone never worked. This might be more effective than rotating them one at a time. Is your dose of Xifaxan adequate? It’s so expensive that it’s often used in inadequate doses. Perhaps methotrexate is worth a try.

Whether the new treatments are tried by your current doc or by Cleveland Clinic, you’ll have to be patient while you give each one a chance to work (or not). I’m sorry.

Thank you Scott, my doctor has not mentioned Stelara, Xeljanx and Methotrexate, I'm encouraged to learn there are more treatments out there that might help me.

Was it a loop or end ileostomy? 

I had two step J pouch surgery with a temporary loop ileostomy and takedown 6 weeks later

I went to the Mayo Clinic for a second opinion. They didn’t tell me anything radically different from everything my other doctors had, but what was radically different was the way they treated me. I was listened to, treated with consistency and concern, and involved in my treatment decisions. Overall a much more efficient, effective, and supportive medical experience than anywhere else I’ve found. I did three steps of j-pouch surgery there, and I’ve decided to keep follow-up care with them. Driving for 8 hours to get their level of care is worth more to me than wasting my time fighting with local providers. 

Good luck, and hopefully you will feel cared for, wherever you go.