i have had a jpouch for 4 yrs and done many biologics such as remicade and humira. I know these meds are harsh and sound scary but if it saves the pouch and gives him relief from Crohns, do it. I recently restarted Entyvio a second time and like this drug better by far. 

hanras posted:

i have had a jpouch for 4 yrs and done many biologics such as remicade and humira. I know these meds are harsh and sound scary but if it saves the pouch and gives him relief from Crohns, do it. I recently restarted Entyvio a second time and like this drug better by far. 

Some GI's like Entyvio because less harmful to immune system. I am good now but was over medicated and got Shingles and Cmv virus while on Remicade, methotrexate and more. Now switched to Humira, off others and wondered about Entyvio but I was hospitalized for almost 4 weeks, on prednizone intravenous. Docs not want t try Entyvio because can take up to 5 months to see if it works. Any thoughts? Avoided having JPouch removal but was ready if they could not get me back to good old days. For first time using Salofalk, mesalamine rectal suspension and seems great along with Humira. I always responded better to 5 ASAs than prednizone before JPouch surgery..25 years.

I'm facing having an iliostomy because of Crohn's in the pouch and dependency on Cipro. I've been on Humira and Entivyo and neither fixed the ulcerations in my pouch. My understanding is that pouches aren't made for people with Crohn's - just too much pressure on the small intestine. I also have a Perianal fistula.

I'm trying one more biologic (Stelara) and then iliostomy here I come.

I've known people in your husband's shoes and they say after the surgery that it saved their life literally or improved their quality of life immensely. This helps me know it is the right thing to do. 

If your insurance allows, get another opinion at Cleveland Clinic (sometimes they do them virtually just looking over the medical records). It will offer piece of mind. I've been lucky to live near Cleveland Clinic, UCSF, and now Boston where there's numerous good hospitals, but a second opinion is always worth it no matter who the first opinion is from.

The best of luck getting the wisdom and the guidance you need. This is hard place to be in.  

I had my j-pouch removed and my quality of life is much better.