Update!

[Deanna in CO]

Hi all,

Wow! Hard to believe I've been gone since about the first of December! But I am going to try to touch base a bit more often as I can't do without you guys' support. :)

I finally went to my GI in some desperation after almost a year gluten-, dairy-, egg-, and mostly soy-free (Enterolab originally said I wasn't sensitive to soy). I went with an agenda: to find out whether he would be willing to prescribe Entocort the way the folks on this forum said we had to take it - at a high enough dose, for a long enough period, with the correct kind of tapering at the end. To his credit, he basically agreed that his experience has shown it has to be taken exactly this way. He prescribed 3 pills a day for 12 weeks, then 2 for 12 weeks, then 1 for 12 weeks. When I am getting toward the end of the 1-pill-a-day period, he wants me to call him to see how I'm doing and determine what to do next - continue at 1 a day or gradually begin tapering. He said sometimes people can get completely off after tapering to 1 every other and then 1 every third; others may need to stay at 1 every other or even 1 a day.

So I am about halfway through the second 12-week period. I can't say I've had the phenomenal results some of you have, but the improvement over the weeks has been significant. I've gone from 10-12 WD's a day even with a fairly strict observation of the diet to 2-4 soft BM's and pretty much no WD. I was concerned as I was finishing up the first 12-week period (at 3 pills a day) because I was still having 5-6 very soft (sometimes WD) BM's a day, but things seem to be continuing to improve.

My GI was rather skeptical of the food sensitivity issue - until I pointed out to him that when I ate even the smallest amount of gluten or dairy I got drastically worse. At that point he said, "Well, maybe you are sensitive to gluten. I'm sure you are as careful about gluten as anybody could be." (Thanks to this list, I actually do know what to avoid!) :)

I'm very thankful for the counsel on this forum. It has been invaluable to me throughout the process.

Tex, thank you especially for gently but firmly coming back to the point about having to be GF/DF, over and over. You must get tired of saying it again and again, but it really is invaluable in getting through to those of us who are fighting the loss. (Lately I watch people who say they are celiac or gluten-sensitive and see them doing things like licking the frosting off the Oreos and just shake my head.)

And Leah, thank you for posting repeatedly about your success with Entocort. Without your encouragement, I don't think I'd have tried it. I have had no negative side effects and it has given me my life back. Thanks!

To the other old-timers here, thanks for all the support and prayers and thoughts and help. I'm hoping to be back more often now. And to the newbies, I implore you, LISTEN to what these folks have to say! The counsel you get here is the only thing that seems to help those of us with MC. If you read the research (well, except Tex's book!), it's depressing, because nothing seems to help long-term - but many of the people here actually have gotten our lives back. It's not an easy process - there is sacrifice involved - but it's worth it. :)

Deanna

[Zizzle]

Awesome update Deanna! Sounds like your doc is a keeper!!

[tex]

Wonderful update! Kudos to your doctor.

And thank you for the kind words. I hope your progress continues.

Tex

[Leah]

You're welcome Deanna and I'm so happy you are feeling better.
Since things could obviously be better still, have you taken a look at the amount of sugar you are taking in at one time? That can still get to me..... fiber foods like salad and beans? Just trying to brainstorm to see if we can figure out how to keep your progress going :)

Take care
Leah

[Polly]

WAHOO, Deanna!

I love hearing updates like this. Be sure to also put this post in the Success Stories forum if you haven't already. It will undoubtedly inspire many who are struggling. Best wishes for continued success!

Love,

Polly

[tex]

Polly,

I can just move this thread, after it runs it's course in a few days.

Love,
Tex

[mzh]

That reminds me; I should post my success story in that forum too.

Deanna, you might want to stay on the regimen longer than 12 weeks if you're still having soft BMs. The thing that turned me around was L-glutamine and Betaine HCl *while* I was on Entocort. I'm still on the Betaine HCl. If I get off it the soft BMs come back. So don't hesitate to try other things while on Entocort.

HTH.

Marcia

[christinakay]

Marcia, what dosage and brand of L-Glutamine did you use?


ChristinaKay