IBD Clinic visit

[chrisnsteph1022]

So I finally gave in and went to Vanderbilt's IBD Clinic. My GI couldn't help me anymore. The plan is to shorten Remicade to every 6 weeks (already on 10mg/kg), add methotrexate injections (25mg weekly), remove azathioprine (not supposed to take with metho), add Questran, plus a lot of dietary changes.

I saw an RD there who specializes in Crohn's and she totally threw me for a loop. No raw fruits/veggies, less than 13g fiber/day, less than 100oz water/day, no whole wheat anything, add a chewable multivitamin and calcium w/D. They also did bloodwork to check vitamin levels (D, B12), ESR, and bunch of other stuff.

I'm also waiting to hear back from the rheumatologist (who trained at Vanderbilt) to see what's causing my back/hip pain (either sacroiliitis, AS, RA or AVN). Hoping to get lots of answers this week.

In the meantime, I had my first solid BM today in 2 years, just 24 hours after starting the metho and questran. :ycool:

I highly recommend Vandy's clinic. You have to be referred by a doctor and it takes a couple months to get seen, but worth it. I was there for 6 hours. If this combo doesn't work, I'll move on to Tysabri and if THAT doesn't work, we'll look into clinical trials (they do a LOT of them there). They see patients from many states. They're in Nashville, TN. Worth the drive!!
http://www.vanderbilthealth.com/digestivedisease/30861

 

[happy]

Yay!! So glad to hear that you are getting good care. The RD advice makes sense for those of us who have followed a LOFFLEX diet and/or an elimination diet. Let us know about your progress.

 

[elfgibson]

yeah glad to hear it went well, I got my call today to schedule an appt. who was the doctor you saw?

 

[chrisnsteph1022]

Dr. Sara Horst. I have my follow-up next week. I'm not doing so well anymore. Like all the other drugs I've tried, it worked for a few weeks, now it's starting to not work so well anymore.

 

[fschriner3]

I switched to Dr. Schwartz at Vandy IBD earlier this year and I have been very pleased. I felt like my previous Doctor was just going through the motions. I feel the team at Vandy is very knowledgeable and they also listen to any concerns or opinions you have about the course of treatment. I'm not in remission yet, but I'm optimistic about the future.

 

[elfgibson]

Thanks for the info. they have me scheduled with Dawn Marie Borromeo Beaulieu, MD. This will be my first time going to vandy ever.

I was diagnosed in 1982 and in 1995 had emergency surgery, resection. 16 yrs. in remission and not on any meds.

Just recently rediagnosed with crohns from colonoscopy in 2011 they put me on Pentasa and in July 2012 doc. said that it wasn't helping. So he put me on Imuran couldn't take that very severe headaches. So he wanted me to go on humira or remicade and I have refused too, I'm not having any problems. Normal bm's no stomach pain. I hope vandy can give me a solution to what to do and maybe not have to go on those "CANCER causing MEDS".