Frustrating Doctor's Visit

TooManyHats · Post by **TooManyHats** » Mon Jun 27, 2011 2:48 pm

Today was the day I went to my GI to ask for a prescription to Gastrocrom. I explained that I had been using it already in the over the counter nasal spray. Unfortunately, he isn't comfortable prescribing that medication. He's prescribed drugs like Pentasa and Entocort, but not Gastrocrom. I explained (at least 3 times) that it's used to treat inflammatory bowel disease. He would not budge. Great, he'll give me a steroid with no problem, but the one drug that works for me, he isn't comfortable prescribing. Instead, he gave me the names of 2 "experts" on IBD.

I have absolutely no desire to listen to an "expert" tell me what I SHOULD be doing, although what I have been doing works. And I'm not going through any more testing, that's enough to drain your bank account. At this point, it looks like I'm stuck with my over the counter regimen.

Joefnh · Post by **Joefnh** » Mon Jun 27, 2011 2:50 pm

I love it when doctors have the attitude

"I've got my mind made up. Don't confuse me with the facts"

That can be frustrating Arlene, will your GP write you a prescription for it?

Joe

Post by **tex** » Mon Jun 27, 2011 5:47 pm

What a bummer. Alldaychemist doesn't carry it, either, (nor Cromolyn sodium).

Tex

TooManyHats · Post by **TooManyHats** » Mon Jun 27, 2011 5:55 pm

tex wrote:What a bummer. Alldaychemist doesn't carry it, either, (nor Cromolyn sodium).

Tex

It's kind of ironic that I could order a steroid medication online without a prescription, but can't get this one.

MBombardier · Post by **MBombardier** » Mon Jun 27, 2011 7:35 pm

I'm sorry, Arlene. I don't know what else to say. I wish I could fix it for you. :bigbighug:

Gloria · Post by **Gloria** » Mon Jun 27, 2011 9:34 pm

Well, I guess I won't be asking my GI for the medication, either. I was hoping your GI would give it to you, but I didn't hold my breath. They always want to back up their prescriptions with a test result, fearing lawsuits, I presume.

I'm sorry that he won't give you any credit for your knowledge and experience.

Gloria

MaggieRedwings · Post by **MaggieRedwings** » Tue Jun 28, 2011 4:56 am

HI Arlene,

In plain English - that really sucks. The holier than thou docs really get to me. Each of us researches and test our bodies to see what is best and they cannot get off the steroid band wagon.

I really feel for you.

Love, Maggie

jme22 · Post by **jme22** » Tue Jun 28, 2011 5:23 am

Hi Arlene,

I'm sorry you ran into such frustration with your doctor. But, I can tell you from my experience that GI docs are not necessarily familiar with Gastrocrom. As you probably know, Gastrocrom is a mast cell stabilizer. Mast cells are most typically known for causing allergic reactions. For this reason, it is typically allergists who prescribe Gastrocrom to help "calm down" the mast cells and hopefully reduce allergic symptoms.

My GI doc is pretty knowledgable about the role of mast cells in GI distress. (As I've said many times on this board, if it weren't for his knowledge I would never had the special stained biopsy that resulted in my diagnosis of mastocytic enterocolitis.) He authored an article on ME and also teaches at a medical school here in DC. Even with his better than average working knowledge about mast cells/gastro symptoms he was not familiar with Gastrocrom use for GI issues. It wasn't until I had a consult with an allergist at Hopkins for the mast cell issues, that Gastrocrom was even mentioned. The allergist recommended Gastrocrom to my GI doc since my GI issues were known to stem from too many mast cells in my gut. My gastro didn't even realize that the medication came in a solution formula, (as opposed to spray or inhalation) which goes directly to the gut for symptom relief. He had never prescribed it for a patient and did so for me only under the guidance of the allergist.

So all of this is to say that even if you went with the "IBD experts" they too may not be familiar with prescribing Gastrocrom for GI issues. Eventually it may be more widely used by gastros, but for now I think it is an evolving issue. (BTW, Gastrocrom solution is also very expensive. Thank goodness I have an Rx plan, but if I hadn't it would have run me $1500.00 per month!)

I hope you have continued good luck with your OTC regimin. That you have found something that works, is a success in itself!

Be well,

Julie

sarkin · Post by **sarkin** » Tue Jun 28, 2011 1:32 pm

I'm so sorry to hear about this disappointing response, Arlene. It's great that you have a plan that's working, but how much better if you could get your doctor on board. I hope your GP is more responsive - or that you can find an allergist with a better understanding of the importance of stabilizing mast cells in treating your MC.

I thought of you often while traveling - I had not brought along Claritin, because it made me dizzy (I think - of course, it could have been something else that made me dizzy). But late in the trip, when I started feeling weird (technical term for a separate post), I bought some Zyrtec-analog in a French pharmacy, and took a Benadryl as soon as I got home. I would not have thought of it had you not shared your experiment - I didn't find nasalcrom in our local pharmacy on the way, either, but will be looking to add it to my toolkit.

My weird hive-thing was visibly improved within 30 minutes of taking Zyrtec, so I know I'm on the right track in paying attention to mast cell issues.

All my best,

Sara

TooManyHats · Post by **TooManyHats** » Tue Jun 28, 2011 4:37 pm

I'm considering an appointment at Bringham and Women's in Boston. Why fool around? If I've got to go to another doctor to help my GI see the benefits of this medication, then I might as well go to the source.

Gloria · Post by **Gloria** » Tue Jun 28, 2011 7:40 pm

Julie wrote:(BTW, Gastrocrom solution is also very expensive. Thank goodness I have an Rx plan, but if I hadn't it would have run me $1500.00 per month!)

That's another reason why I'm not going to try to get a prescription from my GI or an allergist. I'd be trading one expensive medicine (Entocort) for another.

Gloria

TooManyHats · Post by **TooManyHats** » Tue Jul 19, 2011 8:54 am

I got a letter a week ago from my GI. He is withdrawing his professional services. He's obviously not nearly as open-minded as I thought he was. Meanwhile, I've been flaring for 2 weeks and I can't seem to make is stop.

Post by **tex** » Tue Jul 19, 2011 9:36 am

Arlene wrote:I got a letter a week ago from my GI. He is withdrawing his professional services. He's obviously not nearly as open-minded as I thought he was.

I assume that means that he's not quitting his practice, but he's no longer willing to accept appointments with you.

Wow! This disease really bugs some docs, doesn't it. I suppose we should look at that as a sad acknowledgment that he realizes that he's out of his league, when he tries to treat someone with this disease, and so he's just giving up, rather than trying to learn more about the disease.

I feel sorry for him - he must feel defeated and depressed. (Or maybe he's just in the game for the money, and he really doesn't give a hoot, one way or the other, in which case I feel sorry for him, since it means that he has no purpose in life).

Whatever might be driving his motives, that's a sad turn of events, but of course, he's not the first GI doc to allow this disease to get the best of him.

I wonder if the production of antibodies to egg albumin might have a long half-life, similar to gluten, since your reaction is lasting so long.

Tex

sarkin · Post by **sarkin** » Tue Jul 19, 2011 10:00 am

Wow, Arlene. Not that he was helping, but still...

I am composing a little response letter in my heart: Dear Dr. Former-guy, Thank you for letting me know you won't see me any more. Certainly, microscopic colitis can be tough to get a handle on. I had seen at our last appointment that you were over your head/out of your league/not open to what I've been learning, but still hoped we might have more productive conversations going forward - as I also look forward to improved health. I do agree, it's best that neither of us waste further time on an unproductive effort.

That made me feel a little better. I wish I could do something to help *you* feel better.

It's kind of like a breakup in high school... I'm like your mean girlfriend wishing you pulled the trigger and dumped him first.

--Sara

Deb · Post by **Deb** » Tue Jul 19, 2011 10:14 am

Wow, Arlene. What arrogance! I seriously think I'd send Sara's letter!