I saw my PCP today

[wonderwoman]

I had a very good appointment with my PCP this morning. I came out feeling so good. He listened to me!  He knew a lot about gluten intolerance and Microscopic Colitis because he learned about them from the many patients he sees with gluten intolerance and MC.

I told him I was involved with an online support group and the consensus among them is their GI’s know little re this condition and are of no help. I said I found this to be true of my GI here at the clinic. He bucked everything I said and offered no suggestions. He couldn't believe my GI was so unhelpful. I said the Potty People get more help from their PCP, GP, Naturopath or Dietician than from their GI’s. That is the reason I sought help from him today. I have Cigna Health insurance for seniors and have to see their doctors.

I had gone off Budesonide April 20th after cutting down to one every three days. And of course the D returned. I tried Imodium for about a week and found that the first part of the BM was firm but the rest of the stool was watery D and the rest of the day WD.

Then for 12 days I took Pepto Bismol because I read here that it was more therapeutic. That didn’t help at all so Sunday I went back to Imodium.

I have been GF for over two years. I had been eating a little dairy but stopped that a month ago. And of course soy is in everything so that’s hard to avoid. I am keeping a food diary and can’t find what is triggering this flair. I am patiently waiting for my second Enterolab test results hoping that will help me with intolerance's.

I told him my GI wanted me to be off the Budesonide and I wasn’t happy with taking it either but felt I had no choice but to go back on it.

The PCP had suggestions regarding how I should take Budesonide that I would like to share here. He recommended I take Budesonide and Imodium together but on different days. He said start out by taking 3 Budesonide for 2 or 3 days to shock my system. Then take imodium for two days and then alternate between the two. One day take the Budesonide and then the next 2 days the Imodium and keep alternating like this. He said by doing this your system will produce steroid, where if you take it every day it doesn’t. I am willing to give this a try.  I am curious to hear what Tex says regarding this.

My PCP said my GI just returned from Florida where he spoke at several places on Hepatitis C and has other speaking engagements scheduled.  I said he may know all about Hepatitis C but nothing about MC.  My PCP agreed there could be an association between Celiac and MC as researchers are beginning to see and the need to eliminate gluten for treating MC.  I told him I believe the gut is affected by what we put into it and GI doctors are missing the boat by not recognizing the role of foods in GI disorders.  He agreed and said he was going to have a talk with the GI. Good Luck!

I told him I wanted fasting lab done as I had not eaten anything. No problem. He ordered vitamin D 25 Hydroxy, B12 and Folate, TSH, Comp Metabolic Panel, Lipid Panel, and a Bone Density Dexa, Axial Skeleton (hip/spine/pelvis). I had all the tests this morning and will post the results when I get them.

I did not mention to him that I just sent in a second stool sample to Enterolab. Maybe I will at my routine exam appointment in August. I am eager to get the results and will post them here along with the MRT testing I had done in January.

[tex]

He said by doing this your system will produce steroid, where if you take it every day it doesn’t. I am willing to give this a try. I am curious to hear what Tex says regarding this.

Well, he seems to feel that budesonide has fully systemic effects, similar to all the other corticosteroids, but research shows that only 10 to 19% of budesonide is absorbed into the bloodstream. Therefore a patient would have to take it for a long time (probably at a max dosage rate, and probably for 6 months to a year) before it would significantly suppress the normal functioning of the adrenals. I doubt that the adrenals ever completely stop producing cortisol in response to budesonide, but production will be somewhat attenuated, after a while. Prednisone, on the other hand, can severely skew cortisol production very quickly (withing a couple of weeks, more or less).

That said, the treatment regimen he suggested is interesting, and might be worth a try. Sometimes a change in routine can jar our system out of a rut that it might be in.

Keep us posted if you try that, and good luck.

Tex

[Leah]

Hi Charlotte. Thanks for the info. The Entocort/Immodium regimine is interesting and I will definitely keep it in mind when I get to that point. I know how it feels to wait for those Enterolab results. It's tough. I hope you find relief soon from your WD.

Leah

[Gloria]

Your PCP sounds like a keeper.

He proposed an unusual schedule for Budesonide. I think it might work for somone who is on a pretty low dose, as you've been. I don't think it would work as well for someone on two or more a day. Please let us know if you try the regimen.

And of course soy is in everything so that’s hard to avoid.

Soy is hard to avoid, and may be the reason for your continued problems. I didn't realize it was in my vitamin E capsules a few years back. Once I discovered it and eliminated the supplement, I got better (then). Tuna fish is another product that usually contains it. You might want to double-up your efforts to keep it completely out of your diet.

A nicely prepared list of where soy can be found is here (forgive me if you've already seen the list):
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736

Gloria

[draperygoddess]

Charlotte,

Congrats on finding a doctor who listens! Keep us posted on your Enterolab results!

[Zizzle]

GREAT doctors visit and worthwhile tests! Keep us posted.

[CathyMe.]

The PCP had suggestions regarding how I should take Budesonide that I would like to share here. He recommended I take Budesonide and Imodium together but on different days. He said start out by taking 3 Budesonide for 2 or 3 days to shock my system. Then take imodium for two days and then alternate between the two. One day take the Budesonide and then the next 2 days the Imodium and keep alternating like this. He said by doing this your system will produce steroid, where if you take it every day it doesn’t. I am willing to give this a try. I am curious to hear what Tex says regarding this.

Hi there,
Wanted to chime in on this. It sounds as though you have a great PCP...lucky you! I have been doing trial and error with the budesonide on my own and for me the 3 days of 9mg. did shock my system back to normal and I am now taking 3mg. every 3rd day with success. I haven't needed to take the immodium on the other 2 days but have some on hand, just in case. My plan is to add on a day every two weeks. Good luck to you!

[raemckee]

It took a combination of liquid imodium (1/4 tsp. 4 x day) and 9 mgs. budesonide a day to get my stools back to normal. I still have a lot of pain, bloating discomfort and fatigue though.

[wonderwoman]

CathyMe

I am now taking 3mg. every 3rd day with success

I've been there several times and eventually the D returned. Good Luck.

[wonderwoman]

I am beginning to think I react to Pepto Bismol because that is what I took on our cruise two years ago with no relief whatsoever, I was pretty sick and ready to go home. I was also taking Pepto Bismol the last two weeks and it didn't help. Since switching to Imodium on Sunday I am doing so much better.

[Gloria]

I'm glad you're doing better, Charlotte. It does sound like Pepto Bismol doesn't sit well with you. I wish doctors would warn patients that it could be a problem for some people. My GI's nurse was astonished when I told her it made my MC worse.

Gloria

[CathyMe.]

I am beginning to think I react to Pepto Bismol because that is what I took on our cruise two years ago with no relief whatsoever, I was pretty sick and ready to go home. I was also taking Pepto Bismol the last two weeks and it didn't help. Since switching to Imodium on Sunday I am doing so much better.

So glad that you're doing better!

[Beth]

Wonderwoman - just wanted to chime in here to say that you may want to consider removing most if not all packaged foods from your diet. I stopped eating anything processed a few years ago, with the exception of peanut butter and tomato sauce (and I always check the labels), simply because it was too exhausting to try to hunt down what could be problematic in the ingredients. By making all of my own food, I remain in control of what I'm ingesting. Of course, the next issue is balancing out the fiber intake, but at least I don't have to worry about accidentally eating soy or dairy or gluten. (Watch out for those vague ingredients like "spices".)

Hope you're feeling much better and so glad to hear you've got a great doc on your side!