Saw my GE yesterday

[Sharaine]

Well, I saw my GE for a follow-up appointment yesterday. First I met with the nurse practitioner who I really like and then with the doctor and nurse practitioner together. I like the doctor, too, but am not sure he "gets" how food impacts MC. For that matter, I'm not sure the NP does either.

They are concerned that I still have D and loose stools and such. The NP asked about taking Benefiber or some such fiber to make the stool more firm. I told her everything I'd read on this board tells me that fiber would hurt and aggravate the MC more, including the leaky gut.

The doctor would like to see me get off Entocort, hopefully in 2 months, as he is concerned about corticosteroids eating away at my muscles and bones. I share his concern. It's a good goal, I just don't know if it is reasonable to expect to be done with Entocort in 8 weeks.

This all brought me home to share the details with my husband. His response was, "you really need to get the Entrolab tests." I agree, but we don't have the money.

Fortunately, my husband has an interview in the next couple of weeks and the company has expressed a sincere interest in him. If/when he gets this job (or another), then I will do the Entrolab testing.

Meanwhile, I have noticed in the last two weeks that my spirits are higher and happier than they've been in years on a consistent basis. I'm really thinking that gluten and dairy have been the source of much angst for me more than just in my gut. I like feeling rested when I get up in the morning and being chipper much of the time.

Best wishes,
Sharaine

[sarkin]

Sharaine,

Fingers crossed for your husband's job interview - and yay for him, he sounds very supportive and as though he has an excellent understanding of where you are with MC.

And - I had the same experience, a kind of lightening of the heart. I wouldn't have identified myself as dramatically depressed, but looking back on it, I think I was 'under par' psychologically and/or emotionally, for some time.

Your GE & NP do sound as though they care, though they obviously spend less time hanging around on this awesome forum than we do. Whatever the timing turns out to be, I hope you're able to talk him into a long and gentle Entocort taper, with each next step conditional on how you're doing.

Congratulations also on sticking to your GF/DF guns - I know it's pretty persuasive, when something makes you dramatically unwell, but many people report that the 'proof' of testing makes that change easier to stick to. You should pat yourself on the back for believing in the evidence of your own experience!

Love,
Sara

[tex]

Sharaine,

Well, FWIW, I agree with everything you said. 8 weeks is an unrealistic goal for limiting the use of Entocort, and if you're consistently feeling more rested, and in a better frame of mind, then you're definitely making progress against MC.

Thanks for the update.

Hugs,
Tex

[Lesley]

for your husband's interview/job! And glad you are feeling better.

How much entocort are you on? That would determine how soon you can come off it. It's usually one pill a week, at least that's what it was with prednisone.

[Sharaine]

Thank you, Sara and Tex, for your support. I am so glad I have you and this board for support. I cannot imagine navigating MC without this group!

Lesley, I'm on 9mg/day (3 pills). This is my second round with it. I stopped cold turkey after 3 months of it, per my doctor's suggestion, in September. I was doing pretty well without the Entocort until my neurologist had me take 400mg of Riboflavin/day. The Riboflavin sent me into a HUGE flare, just like pre-diagnosis in June, with constant D up to 20 times a day. Now, with Entocort, I'm only in the restroom maybe 5 times per day.

Hugs,
Sharaine

[Gloria]

Hi Sharaine,

I agree that you need more time on Entocort. The Enterolab testing will help you determine additional intolerances. It would be great if your hubby can get the new job so you can order the testing. If not, you don't need the test results to eliminate soy, the next big intolerance for about half of us. I would try eliminating it to see if things improve.

Have you seen any patterns in what you're eating and subsequent symptoms? It's difficult to detect a pattern without having some improved days. I found myself in that predicament for the past several months. I finally eliminated a food that I suspected and began to see an improvement. Sometimes we just have to trust our instincts. This is a big guessing game; that's what makes it so frustrating. Testing helps, but we still have to experiment.

Good luck!

Gloria

[Lesley]

8 weeks is too short for 9 mgs. That's the max dose I think. And if you are still going 5x a day you clearly need more time while you figure out what is making you go that much.
Is it all D? Or any firmer stools?