S.O.S.!

[jillian357]

You guys and gals are the best...thanks for all the replies. It is SO comforting to have good friends around who truly understand this crud.

I do take fish oil, I have for years...I think I better go back and read the label. thanks for the heads up on that one.

Polly, I did just fine for my race.....but I was also taking a short term course of Prednisone for an IT band injury. My stomach felt fantastic while on the Prednisone, but that's not a drug I ever want to take long term if I can help it.

Last night I had a little chicken breast and 1/2 cup of wild rice....another episode hit. Not so much "d" but horrible gut wrenching stomach pains. I get them so bad I can't even stand up straight!

I'm guessing the wild rice must have had too much fiber? It is a GF organic rice that I have eaten other times and been fine. I guess things are just so inflammed again, and pretty much anything can set me off. I agree, it's just not time to be weaning off the Entocort.

Thanks again to everyone for their support and replies. It means a lot to me.

Love,
Jill

[Pat]

Hang in there, Jill. We're going to figure this out someday!

Pat

[tex]

Jill,

Sorry to hear that you reacted that way to the chicken and rice. I'm surprised, because, both those are usually pretty "safe" foods, and normally well tolerated. Assuming that you checked to make sure that the chicken wasn't injected with something "risky" during processing, and the rice wasn't "enriched" with gluten, during processing, I don't understand why they affected you so adversely. You seem to be having a full-fledged reaction. Of course, looking back, I can remember that quite often, it didn't matter what I ate - if I was at a certain stage of the reaction process, I would have the symptoms you describe, though, of course, eating the wrong things, could certainly make the symptoms worse.

Hopefully, the Entocort will take charge again soon, (maybe today), and you will feel a lot better.

You're most welcome, as always.

Love,
Tex

[grannyh]

It took me over two years to get from 3 to 1 entocort a day. My gastro doc says to use what I need to use. He writes the prescription for 3 a day and if I need to take more than one for a few days it is ok..then I go back to 1 a day. Sure helps with the cost to have the prescription written for 3 a day. But then I never know when I might need to take 2 for a couple of days.
grannyh

[Gloria]

Jill,
I know what you mean by feeling like a failure when you had a relapse. I felt the same way. But remission is a long and bumpy road for a lot of us and we're going to have some setbacks. As long as we don't let it get us completely down, we can still make progress.

I agree that we need to modify the amount of Entocort according to our needs. I also would have recommended that you increase it to 9 mg/day until your flare ends. When I had a flare a couple of weeks ago, I took 2 Entocort pills and it only took a couple of days to take effect. Now I'm beginning to reduce the dosage again.

Hang in there - this group will help you over the bumps.

Gloria

[JLH]

OK, I went to their site and checked all the boxes. I got the Super Omega 3 Fish Oil. They had either 100 or 130 for $25.50!!!!!!!!!!

I Googled for coupons and some discounted sites appeared, too. Vitacost (a PP had mentioned them) had the best percent off so I went there. They had them for $12.95. GREAT, but when I checked the ingredients, it had the same d-Alpha Tocopherol. NOT GREAT.

[JJ]

Hi Jill,

I have been on Entocort for several years...I was able to wean down to one pill every other day! Because of loss of job stress,moving... etc, etc....I am back to 2 pills per day. I am hopeful that I can begin weaning down again one of these days. Maybe you weren't ready to wean down??????

Please take care kiddo!

JJ (Jill)

[jillian357]

Ah, so comforting to know others have this trouble too. I'm so sorry that everyone here has to deal with this junk, but I'm so grateful for the feedback.

I did some investigating in my medicine cabinet this morning....get this! My Calcium, Magnesium and Zinc pills have GLUTEN in them, even listed on the bottle. I felt like a twit when I saw it, I've been taking them for years and never knew.

I just got back from the health food store and found some sans gluten. I can't believe how much gluten is in so many consumables. Crazy!

Have a great weekend everyone! thanks so much!!
Love,
Jill

[tex]

Don't beat yourself up, that happens to most of us, sooner or later. Good detective work! Hopefully, replacing them will help to get things going your way, again.

I hope you're having a great weekend, too.

Love,
Tex

[Gloria]

Yup, I found soy in my vitamin E capsule several months ago. Once I stopped taking it, everything improved. I hope you have similar results.

Gloria