New to the forum, have had crohn's for 29-ish years

[derpderp]

Hello everyone, my name is Dave and I have Crohn's Disease - the 555.2 variety, for those that are familiar with ICD9 codes

I was diagnosed in January 1986 at the age of 9, but had symptoms of varying degrees/severity for a solid year before that. Since that time I've had every test imaginable done, numerous surgeries, seen amazing (yet scary!!) advancements in medications and treatments, and had just about every complication that exists under the sun.

Joint Pain, night sweats, narrowed small intestine at the ileum (had a bowel resection July 8th, 1994 for that), peri-anal disease (numerous fistulae and abscesses), major sun sensitivity issues (due to side effects from medications), and I think I'm developing some form of early arthritis. That last part could just be from a flare I'm currently experiencing though, with increased joint pain.

The treatments have run the gamut, azulfidine, prednisone (currently taking), imuran (azathioprine) - currently taking, entocort, lomotil - currently taking, flagyl, cipro, Remicade, humira, entyvio - currently taking, the bowel resection mentioned above, numerous seton placement surgeries, one or two fistulotomies, PICC line for TPN feeding (in tandem with total bowel rest), and I feel like I'm forgetting some things here.

Anyway, I figured I would say hello and introduce myself to the crew here. Hope everyone is doing well (I realize that's a relative term!), and to make some new acquaintances. Have a good one!

Dave

 

[24601]

Hi! Welcome to the forum!

I can imagine that you've seen amazing changes in the treatment of Crohn's over the last 29 years! I'm a relative newbie compared with you, diagnosed 19 years ago, and when I look back to the early days of my treatment when my doctors were so excited about budesonide and hailing it as some kind of wonder and strictureplasties were the most positive advancement they could think of to talk about, it's a world away from today.

In a way I think I was possibly quite lucky to not get a diagnosis as a child in the 80s, when I first had symptoms!

How are you finding Entyvio? I don't know if you've already found it but there's a sub-forum here and a support group thread here which you might find useful for connecting with others on Entyvio and sharing experiences.

 

[derpderp]

Hey, thanks for the reply and the links! It is definitely a different landscape than it was when I was first dx'd. Imuran wasn't even on the market at that time, hehe.

Entyvio has been kind of hit and miss for me. The small bowel involvement seems to be kept under control with it, however the peri-anal fistula have been out of control. The further my doc and I dig into that latter aspect, we're finding it hasn't really been shown to be a solid drug to treat peri-anal issues. As a result, I'm looking for a new primary treatment.

It saddens me though, as I was on Remicade and Humira for a combined 15-ish years, which kept me pretty close to full remission during those years. I was hoping the "umabs" would keep me on my lucky streak there for awhile longer, heh.

 

[24601]

Sorry to hear Entyvio isn't working on all your disease. Are you thinking of swapping to another anti TNF alpha biologic? Maybe Cimzia?

Have you ever tried exclusive enteral nutrition to treat active disease?