New to this forum - not new to Crohn's

Hello everyone,

I'm new to this forum, but not new to Crohn's. I am a male, diagnosed 12 years ago at age 49. I've had gut issues since I was about 10. Back then my pediatrician called it nervous stomach and provided no treatment options. So I muddled thru life with various reactions to the foods I was exposed to and thought that I had to avoid those that I associated with pain, diarrhea, etc. Little did I know that years later there would be a name associated with what I was experiencing.

Fast forward to 2005. My wife convinced me to see a doctor because things were only getting worse. The GI said I needed a colonoscopy to determine if there was any inflammation in my colon. A little scary, but quickly learned that the prep is far worse than the procedure.

Treatment started with Pentasa for several years, then added Entocort EC, 3 - 9 mg PRN for 7 years. Along the journey, added vitamin D and probiotic. Added omeprazole for GERD.

Fast forward 10 years to my first GI relocating and getting a new one. This GI is a top down therapist, believing strongly in biologics...not that my first GI did not, just that she is a bottom up therapist and only used biologics as a last resort.

November 1, 2016 started Humira after two months of 6-mp to get me prepped. On the day of the third round of injections, a 15 week bout with diarrhea started. Did a pill cam at 8 weeks of torture with diarrhea, learning that my small intestine is fine and my colon is badly inflammed....which we already knew. GI encouraged me to stay the course with Humira, which I did. At the three month mark he determined that I was having no response to Humira. Diarrheas has been so bad, urgency is near immediate. Stopped Entocort when Prednisone was added, then tincture of opium to try to slow down my motility. This coming Monday I start Entyvio.

I'm very interested in hearing from Entyvio patients whose journey is similar to mine and how you have done with Entyvio. I realize that everyone is different and no two people will experience the same results.

Thanks for taking the time to read my story.

Hi Randy.

Your story has one or two similarties to mine. I went years without being on anything at all; not even mesalazine, because I couldn't tolerate it. Then I went on immunesuppressants (azathioprine/6MP) and courses of prednisolone at various times over the next few years. The pred would get me out of acute flare-ups but was unable to put me into remission. Long story short, it was 11 years after diagnosis before I finally started my first biologic, which was Remicade. I was on it for a whole year but it didn't work.

My theory is that when I finally got onto Remicade, my disease (which was also in the colon) had become too severe for Remicade to handle. When I told my GI this, he cautiously agreed with me. In a nutshell your body produces so much TNF that Remicade (an anti-TNF) can't neutralise it.

Unlike you though, I went on to have surgery. Virtually all of my colon was removed and I had an ileostomy for two years before I was reconnected to the rectum/sigmoid. The Crohn's returned in the rectum, so I'm on Entyvio now and have had 4 infusions so far. In terms of inflammation I am not sure if there is an improvement or not. My faecal calprotectin went down by a lot (from nearly 2000 to 600-ish). But in the last few weeks I've had uveitis and then shingles - neither are necessarily anything to do with Entyvio. Crohn's-wise, I've been dealing with tenesmus, anal itching, occasional severe urgency (sometimes to the point of having accidents), abdominal pain. My symptoms are somewhat different now that I no longer have a colon - basically I have proctitis now.

I second scifigal on the stool samples and ruling out c. diff, salmonella, etc. C. diff, in particular, is a very common infection.

At any rate I hope the Entyvio works for you. I wish I had some more advice to give, but I don't really. Your current GI seems to be doing all the right things.

Welcome to HW Randy,

I've been on Entyvio for a year now and it is helping. This time last year I was in a constant flare but after about 4 months on the Entyvio I started to notice changes for the good. And my scope in December looked great, the best in years. There is also noted improvement with that nasty proctitis I was dealing with.

I was told when I started it that it would take at least 3 months to see any results and between months 3 & 4 it kicked in. So be patient and once you get through the loading doses I would hope you see some improvement.

The infusions are only 30 minutes but I'm usually there for an hour since they don't mix the drug until you are there and they have to get the IV started.

Make sure you enroll in patient assistance if it is offered to you. I only pay $50 out of pocket for the drug portion, but that will probably depend on your insurance coverage.

That's all I can think of right now. Good luck.