My doc...very discouraging..

Lesley · Post by **Lesley** » Thu Oct 20, 2011 11:06 am

1st email:
I have been off the prednisone for a week now. I feel horrible, alternating diarrhea and constipation. A lot of pain. I am trying to get off PPIs, and the heartburn is really bad.
Altogether pretty uncomfortable.

I have been wanting to ask you - I don't remember if you said you had done the mast cell test, and, if yes, what it showed.
Could you let me know please.

Answer:
When you say "mast cell test" I assume you mean a test to rule out systemic mastocytosis. It seems unlikely, based on your symptoms, that you would have systemic mastocytosis. Serum histamine levels are, at times, elevated with this condition. You have not had that blood test run. You can discuss with Dr. Steindel whether she feels it would be worthwhile to obtain.

2nd question:
I am asking because a lot of people, who DON'T have systemic mastocytosis have mast cell problems. From what I have managed to glean, it's also dx'd through biopsies done during the colonoscopy using a special stain.
But I am interested that many think there is some involvement of mast cells in this disease even if there aren't clear cut mast cell issues, as in systemic mastocytosis.

The people to whom I am talking have a wealth of knowledge gathered over years and have a virtual library of articles from every possible journal. I have been reading, and am trying to figure out what will help me.

Everyone needs diet modifications and many need meds in conjunction with these measures.

I can get budesonide from out of the country for a vastly reduced price, and with your approval, I will get it. Even though this is a way lower dose of steroids than prednisone I would like to be off drugs altogether. However, if I need it to get the disease under control, then so be it!

Answer:

I'm not sure budesonide is going to help if you are having alternating diarrhea and constipation. Those symptoms strike me as likely to be due to irritable bowel syndrome (IBS) which won't be affected by steroids. Microscopic colitis usually produces a painless watery diarrhea where the patient otherwise feels fairly well. If you feel you have more of the latter you could try budesonide. If you decide to take it, try 9 mg in the morning for 3 weeks, then 6 mg/day for 3 weeks, followed by 3 mg/day x 3 weeks. After 9 weeks hopefully you would be able to get off the budesonide completely. Again I would take the budesonide only if you are having persistent diarrhea, not alternating bowel habits.

My reply:
According to the biopsies you did, you dx'd MC. I think the constipation is a result of the Norco I take for my back. I try to take as little as possible, using the pool to help the pain. The less I take the more I have diarrhea.

If I don't take Norco I have diarrhea non stop. Watery, mucous, but not painless. I have cramps and discomfort, serious heartburn and some nausea, and explosions of diarrhea. I find that most of my fellow sufferers have many of the same symptoms. All of them control the symptoms with diet, and some with diet accompanied by meds.

I am trying different diet options, starting with gluten free, dairy free, and now an elimination diet. All of them say this is essential, so I am trying it.
There are nearly 100 people reporting on the forum.

I am also off the PPIs. I am using calcium carbonate powder, potassium gluconate powder, and vit D drops to control it, and it seems to be working so far.

Now it's IBS? He had a positive biopsy for MC!!! What do I do with him!

draperygoddess · Post by **draperygoddess** » Thu Oct 20, 2011 11:30 am

FIRE HIM.

MBombardier · Post by **MBombardier** » Thu Oct 20, 2011 11:35 am

If you feel you have more of the latter you could try budesonide.

What is this? Patient diagnose thyself?

I agree with Cynthia.

Zizzle · Post by **Zizzle** » Thu Oct 20, 2011 11:35 am

Oh Lesley, I'm so sorry. He sounds like the typical neanderthal GI doc many of us have come to know. Sometimes you just have to agree to disagree in your own mind, and use your GI for the prescription writing powers they can offer you. Be happy he's willing to write you a script for Entocort, even if he thinks it won't help. Maybe you can prove him otherwise and teach him a thing or two. Sadly, many GIs learn new things one patient at a time, because the continuing education and pharma communities aren't about to teach them anything new about MC.

I would politely ask that he or his staff call the pathology lab to request the stain for mast cells. Get the proper name of the stain first - sorry I don't know it.

Then ask for a script for Entocort and agree to check back with him as needed.

You may not ever be on the same page, so just make sure you come away from this with the things you need.

sarkin · Post by **sarkin** » Thu Oct 20, 2011 12:03 pm

I think Zizzle's right - in fact, I think everyone's right. But he doesn't have to *know* that you've fired him. Get when you need (the staining for mast-cell enterocolitis, and the Rx for budesonide, maybe even if you haven't decided to take it yet).

It would be tempting to really ramp this up and nag about how come he said it was MC and now he says it isn't, but - really, it's not as though he's going to get smarter, more competent, or more caring overnight.

(On the plus side, you're getting email responses - my doc doesn't share info by email, but I'm going to have a little chat with her about it at our next meeting.)

Lesley · Post by **Lesley** » Thu Oct 20, 2011 12:05 pm

I was fool enough to think he had SOME intelligence when he even LOOKED for MC. He did the biopsies for heaven's sake! With those positive he now thinks it's IBS??? Does that even exist? Or is it undagnosed MC?
He said going gluten and dairy free could "at least do me no harm".

I did ask him for the biopsy results. I want to post them here and get more informed opinions than he is able to give.

My internist doesn't necessarily agree with me, but she is willing to let me take the lead as long as she doesn't think I am doing harm, and will order any tests I ask for.
I want electrolyte testing more regularly than we have been doing it. Tests cost $20 a pop at Kaiser, so when I do blood tests I ask her to do the entire panel. Might as well, once I am paying.

Lesley · Post by **Lesley** » Thu Oct 20, 2011 12:31 pm

I know I can't really "fire" him. I need him for tests and meds. Other than that? I stay far away.

Thanks for your advice!

Post by **tex** » Thu Oct 20, 2011 2:01 pm

Lesley,

If you order the Budez CR from overseas, you don't need a prescription. Canadian online pharmacies require scripts for orders from the U. S., but that is apparently just a feelgood policy, because a doctor's prescriptions are worthless outside of the country, (state, actually, though I'm guessing that most states probably have a reciprocal agreement in place), in which he's licensed to operate.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Thu Oct 20, 2011 3:09 pm

i cant move past.....

Microscopic colitis usually produces a painless watery diarrhea where the patient otherwise feels fairly well.

wish we could make doctors like this endure chronic MC symptoms for a week, or even a month....

Lesley sorry that you dont have a supportive informed doctor to help you. is it worth investigating a new doctor?

Joefnh · Post by **Joefnh** » Thu Oct 20, 2011 3:35 pm

Lesley I wish that the D form MC that it were painless, the cramping can be awful at times and many here also deal with GERD as another issue.

I would fire him but before then get the entocort after that look for another GI doc. You have a Dx of MC from the biopsies, it does not get any simpler than that.

IBS Is just another way of the doctor saying I don't know whats wrong.... It's a garbage diagnosis.

I hope you can get sme relief through the entocort.

Joe

Post by **tex** » Thu Oct 20, 2011 4:10 pm

Microscopic colitis usually produces a painless watery diarrhea where the patient otherwise feels fairly well.

Unfortunately, that's the classic, original description of the disease, so that's apparently what they're taught in med school. It appears that in medicine, rarely are original mistakes in the literature corrected, unless they're detected relatively promptly.

Tex

sarkin · Post by **sarkin** » Thu Oct 20, 2011 4:38 pm

You know, if they'd just let a few more members into their select 'celiac' club, that pain would suddenly be totally explained by their existing mediocre thinking. The watery D is MC - but - though perhaps totally unrelated! - the pain is from celiac disease! Everybody wins! Patients get diagnosed, and doctors don't have to learn anything!

I've been looking at a site called 'retraction watch' - perhaps that's why I'm now so especially whipped up. The number of retractions in medical and scientific journals is *through the roof* - because there's reputation and money to be earned in getting bogus info out there (and let's be clear, not all of it is caught)... and of course, once the error is blogged and quoted in the media, it doesn't even matter if it's corrected in the original literature, because the bad info is Out There.

(I'd better step away from the Internet...)

L,
S

Robin · Post by **Robin** » Thu Oct 20, 2011 7:37 pm

Hi Sara, I cant believe there is a web site like that but kudos to you for finding it!!! I am a nurse and been in the medical profession for over 20 years and I can say that there are A LOT of mis information out there!!!

I have worked on research projects with some Interns and if there is a small margin of conflict they write it so the margin is greater than it seems! They wont admit that, but after 10 years of it I had to stop doing it. I couldn't sleep anymore. It bothers me to think that the doctors who we are suppose to think highly of, are really not what they seem to be! The doctors of years ago were for good quality patient care. Now we have manage care where the insurance companies and pharmaceutical companies tell the doctors how they can care for there patients! ITS DISGUSTING!!!

I am checking that website now! Thanks for the info.

Lots of health and happiness,
Robin

sarkin · Post by **sarkin** » Thu Oct 20, 2011 8:17 pm

Oh, no, Robin - if you check that website now, I'm going to feel responsible for how you sleep tonight!

You know that flashy-thing in the Men in Black movies? Let me know if I should get my hands on one and drive out to L.I. so you can get some peace

Robin · Post by **Robin** » Thu Oct 20, 2011 8:26 pm

You are to funny! I don't sleep as it is, but don't worry you wont have to drive out here. But thanks for the offer!