The good, the bad, and - well, we all know the ugly!

[Deanna in CO]

Hi all,

So I have bad news, and then some amazingly good news. I'll start with the bad.

I have now been gluten-free, sugar-free, and corn-free (and off most food additives) for almost four months, dairy-free for a month and a half (almost dairy-free 3 months but I discovered a couple of hidden sources in food supplements), and soy- and egg-free almost a month, and I am still getting no improvement in the D. Pepto makes my ears ring, so that and all the 5-ASA's are out. On top of that about three weeks ago I developed a constant stomach pain (just under my breastbone on the left side). The pain varies in intensity and tends to radiate around toward my back, and it hurts worse if pressed on.

So I called my GI and talked with the nurse, who said she would talk with the Dr and get back to me. When she called back, she told me that he had prescribed Asacol and that he was adamant I was to go off ALL supplements (things like iodine, B vitamins, calcium-magnesium-D3, L-Glutamine - though he had no idea what I was taking or how badly I needed it). I asked about the stomach pain and she said he was confident the Asacol would take care of it (remember he hadn't even talked to me to find out where it hurt!). When I got off the phone I did a bit of checking and confirmed that Asacol (like all the other 5-ASA's should not be taken by people who react to salicylates like aspirin and Pepto). I called the nurse back and told her I couldn't take that (her response - "but we ran it by the pharmacy"!). I made an appointment for an office visit with the Dr, and I asked about Entocort. Eventually she called back (actually, she called my husband saying they couldn't get ahold of me - though I still had the cell phone I'd had a couple of hours before when she called me the first time!) and said he had prescribed Entocort, and I was satisfied for the time being.

And now the good news . . .

When I started telling friends about my experience, they all agreed I needed a new doc. So Monday morning I got on Kaiser's website to look at who else I could choose. Out of curiosity, I checked the Colorado Springs area, though we live north of the Denver metro area. To my surprise I discovered that Dr. Scot Lewey (the famous "Food Doc") is a Kaiser provider down there. A quick call to Member Services confirmed that I could simply make an appointment with him and go see him - for nothing but the $50 specialist copay!!!! So - drum roll please - I get to go see Dr. Lewey on April 10! Given my current situation, I can't tell you how happy I am! (But knowing you all, I'll bet you can guess! :-)

I'm waiting for a phone call from his office to confirm what supplements I should go back on, what tests and records he needs from my previous Kaiser GI, and whether I should start the Entocort or wait until I see him. And I'm still hurting - but at least now I have confidence I'm going to be seeing someone who knows what I need.

BTW, any thoughts on the above issues? I already went back on the iodine drops - I'm eating only sea salt, which is not iodized, and my thyroid has improved dramatically since being on it, so that's something I need. I took Entocort yesterday, but not today - I only took 3 mg rather than the 9mg he prescribed until I saw how I reacted - it made me slightly dizzy and gave me a minor headache, and at that dose for one day didn't seem to help. Kinda thinking if I don't hear from the Dr I'll just wait until I see him.

Anyway if you're still with me, thanks for listening!

[jmayk8]

Wow congrats! I def think the good news out weighs the bad! Let us know what happens and what he says, that's so amazing, I'm jealous!
Jenny

[nancyl]

Deanna,
I also couldn't take Pepto. Well, I did for a couple of weeks and developed terrible pain. I previously had a bleeding ulcer. When I told my GI he said that Pepto would not cause me any problems and to stay on it along with Immodium and Gas X. I quickly changed doctors.

Let us all know how you make out after you visit and hope you feel somewhat better before that.

Nancy

[Leah]

Hi Deanna. Yay! I was just reading about him a couple of days ago. That's great! Please let us know how it goes.
Sorry to hear that you are feeling so poorly and that you reacted to the Entocort. It just goes to show you how different all of us are. It works so well for me that i don't want to give it up :)
Keep us posted
Leah