New here and overwhelmed!!

[Tanya Lynn]

Joe,

Thanks again for all your feedback. How long have you been taking
the Endocort...

I've been drinking alot of fluids today, just not what I would love to
have right now but know that's out of the question.

A glass of Pinot Noir...

Thanks again,

Tanya

[Joefnh]

Tanya I have been taking Entocort 9mg since the end of May. My goal is to be able to taper off of it and manage these symptoms with diet and some minor medications. I am gong to wait until after some travel to Australia in August before attempting this. In early July, per my doctors request I did try to taper off the medication, but after only 4 days the symptoms did come back with a vengeance.

Initially I did experience a minor to moderate sinus like headache that did resolve within 7 - 10 days. I also found that during the first week, that it did make me a feel a bit unsteady. On the good side, within 2 weeks the CC and Crohns symptoms did get significantly better, not perfect but better.

Beyond the Entocort I have been eating a simplified strict GF/DF/SF diet with minimal yeast. IMO the diet is at least as important as the meds

I have found that I can tolerate a bit of white wine or even champagne every now and then.

Thanks for posting your questions and updates

Best Wishes

--Joe

[Tanya Lynn]

Hey Everyone,

It's now day 16 of being on the Endocort and I'm still having D. I've
been keeping a daily record of how many times I'm going and it's
anywhere between 8 to 12 times a day. The headache that I was having
stopped on day 13. Yeah!!!

Still having muscle pains and hoping that they will go away soon. But something
just started up yesterday, about 1 to 2 hours after eating I start having really
bad heartburn. Has anybody experienced this? Does anyone know what I
can take for it? This is something new, I've never really been bother by heartburn.

I would appreciate any advice....

Thanks and I hope everyone's trying to stay cool...

Tanya

[tex]

Tanya,

Hmmmmmm. Either you still have one or more major food intolerances in your diet, and/or Entocort will take longer than average to work for you, (or eventually you may find that you are one of the approximately one in 3 for whom it does not bring remission). Besides gluten, have you eliminated all dairy products, and soy, from your diet?

I used to get heartburn a lot, but that was years before my symptoms started. Since a lot of the more potent drugs, such as the Proton Pump Inhibitors, (PPIs), can cause MC, if I were going to use a medication, I would try a simple remedy first, such as Tums, or some other antacid. When I would get that feeling, (after my symptoms started), it was usually due to trapped gas, and I found that if I drank a sprite or 7-up, it would usually make me belch, and that would relieve the symptoms. YMMV, of course.

Tex

[Tanya Lynn]

Howdy Tex,

Thanks so much again for all you do here... You are just amazing!!

I have been GF/DF since July 14th and started the full dosage of
Endocort on July 19th. But, I haven't given up the soy. So I guess this
means that I will be going SF as well.... Oh how I didn't want to
give up Soy. Wow, this is so hard, but I just keep telling myself,
that I'm not dealing with a child that has these issuses. That would
be the ultimate bummer...

So, today I will go SF and see what happens.

Thanks again Tex,

Tanya

[Ginny]

Tanya, welcome as well. You have lots of good advice, but remember this is an individual thing and you will have to find your way by trial and error. I have been on Entocort since last Nov with a break in Jan-Mar and then had a set back. I never could take 3 pills, just started with 2 and then dropped to 1. Diet is the most important part of controlling this disease and it will take time to refine it, but you will get better. One day you will look back and realize how much better you are feeling. This support group is the best! Ginny

[Rosie]

Tanya, also be sure and check your current diet to see if gluten or dairy has somehow snuck in. Vitamins, supplements, cosmetics and "store bought" prepared foods can sometimes be the culprit. I remember reading a scientific article where a group of non-responsive CD patients were more closely examined. One of the things they did was meet with dietitians and something like 30% were discovered to have hidden gluten in their diet.

As someone who also has to avoid soy, I understand your hoping that soy isn't a problem, but I've now found ways to get around soy, and it's OK. The transition to soy free took some work, but now I've adjusted and it's routine. The hardest part is eating away from home.......

Are you getting tested for food sensitivities by Enterolab? It took the guesswork out for me and and provided motivation, because I wasn't wondering if I really had to avoid soy.

Rosie