Fun Times with Dr. *Sunshine*…...

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C.U.B. girl
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Fun Times with Dr. *Sunshine*…...

Post by C.U.B. girl »

First visit with the GI doc today. Always in the past I've seen the NP, who I like very much, but she was booked all month (you gotta wonder why people would rather see the NP than the doc himself….). The only other times I've seen the doc was when he was running a scope into a body cavity as I faded to black...

Just as I suspected, he's everything we've come to expect from modern medical training. Among the "encouraging" words:
> CC is harder to treat than LC (lucky me!)
> this "thing" will come and go frequently (in other words, get used to it)
> the best we can hope for is to get the D under control so it doesn't run your life (um, thanks, but pardon me if I hold out for
a little more than that!)
> we have no idea why this happens (what's this "we" stuff? I could tell you why this happens, if you would only listen!)

And to that end, after surveying his computer screen of the list of possible Rx options, he promptly wrote a script for Colestid, 2 mg twice a day. Great. Now I'll be bound up like a brick, keeping all the toxins sitting inside my already inflamed gut.

I'm seriously considering giving into my rebellious side and ignoring his instructions. I'm down to 2 BM's a day -- the first one this AM was *almost* Norman --- so I can't imagine why he thought I needed major D control like this.

Given his pedantic nature, I knew better than to waste my breath on the possibility of achieving remission with dietary measures…..

As annoying as it is having to put up with D, it's really the only clue I have that something I ate doesn't agree with me and I need to red-flag it. If I'm all bound up, I'll never know if I'm eating stuff that I shouldn't, and it will do even more damage to my gut as it camps out in there for who knows how long…..

Maybe I should flip a coin…...

:sarcasmon:
Cindy
2008 Celiac disease
2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
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Post by tex »

:sigh: Not very helpful, :iagree:

But doesn't it feel good to realize that despite all his medical training, you know more about the disease and how to treat it than your doctor, and you can easily tell when he doesn't know what he's talking about. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by C.U.B. girl »

The only thing he said that *might* be of any use, is regarding Flonase nasal spray. He asked if I had used that, specifically, which I had -- prescribed for seasonal allergies about the same time as all the other possible triggers were in use. Said that could be the trigger, but failed to explain why before he launched into his standard "conquer the D" speech.

Have you ever heard of Flonase being contraindicated for MC? That was a new one to me….
Cindy
2008 Celiac disease
2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
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Post by tex »

Cindy wrote:Have you ever heard of Flonase being contraindicated for MC? That was a new one to me….
Either your doctor has access to information that you and I are not aware of, or he's confusing the product with a different drug, or he's smoking something that's not legal in our states. :lol: The active ingredient in Flonase is Fluticasone propionate, which is a corticosteroid, specifically a glucocorticoid, the same class of drugs under which prednisone and budesonide fall, and of course cortisol, which is naturally produced by our bodies, also falls into this category.

The inactive ingredients in Flonase Nasal Spray include microcrystalline cellulose and carboxymethylcellulose sodium, dextrose, benzalkonium chloride, polysorbate 80, and phenylethyl alcohol, none of which are known to trigger MC. So I really don't see how or why Flonase would trigger MC. :shrug:

I suppose that's why he earns the big bucks — he "knows" something that we don't. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by C.U.B. girl »

Two weeks post Dr. visit; he requested I give him an update on my "progress" via the patient/doctor e-mail system they have in place.

I informed him that the colestipol did what it was supposed to do, and stopped up my plumbing quite effectively (I took it only because I had company coming for a week and didn't want to spend the whole time in the bathroom). I went off of it for three days to give the resulting hemorrhoids time to heal, and of course the D came back. I mentioned my preference to treat the underlying condition (inflammation of the colon) rather than just treating the symptoms, and asked what he would recommend. Here is his response (copied and pasted):

"There are multiple causes of collagenous colitis. Cholestyramine or Colestid appeared to be effective in controlling the diarrhea related to bacterial toxin effect on bile. Personally, I would not consider using budesonide or mesalamine preparations in your situation. These medications can be expensive and associated with side effects. The course of collagenous colitis can vary quite a bit. I seen patients we've treated for 3-6 months and then stop therapy completely. Many of these patients do well for 3-5 years before recurrence of the diarrhea."

So I guess what he's saying is that he wants me to stay on the colestipol for several months, and then wait for a recurrence in a few years. My question is, how can he be so sure that the D is caused by "bacterial toxin effect on bile" and not general inflammation in the colon? There were no tests done and no scopes performed for him to come to this conclusion…. :confused:
Cindy
2008 Celiac disease
2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
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Post by tex »

Cindy's GI doc wrote:Personally, I would not consider using budesonide or mesalamine preparations in your situation.
Wow! How did he happen to end up practicing as a gastroenterologist? Obviously he doesn't recognize MC as an IBD.

As creative as he is, he probably doesn't need any tests. He created a new cause for MC that I've never seen in the literature before. "Bacterial toxin effect on bile"? He obviously has a vivid imagination. :lol:

Excess bile is a common cause of D, associated with MC and other issues, but bacteria have nothing to do with that. Removing one's gallbladder for example, just about guarantees D, at least for about 6 months or so, because the bile will flow freely without a gallbladder to contain it. That class of medications is very helpful for limiting D in that situation, because they are bile acid sequestrants. And of course, certain bacterial toxins can cause MC, but that doesn't have anything to do with bile. :headscratch: I reckon he decided to kill 2 birds with 1 stone, so that he could cover as many bases as possible. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by C.U.B. girl »

I'm thinking it's time to shop for a new GI doc. He and his cohorts are the only game in town, though, so I may end up traveling at least 45 minutes or more to find one who has a lick of sense…..

Ugh. I hate having to train up a new doctor…. :roll:
Cindy
2008 Celiac disease
2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
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Post by tex »

I hear you. Some of them can be mighty tough to train. :lol:

Good luck with your search. Georgia happens to have a couple of GI docs who have received the stamp of approval by other members here. If you are interested, they are:

Dr. Edward Cameron
Atlanta Gastroenterology Associates
1340 Upper Hembree Road
Suite A
Roswell, GA 30076
(770) 569-0777

or

1505 Northside Boulevard
Suite 2000
Cumming, GA 30041
(770) 781-4010

http://www.atlantagastro.com/physicians ... cameron-md

and

Dr. Michael Galambos
Digestive Healthcare of Georgia, P.C.
Piedmont Hospital
95 Collier Road
Suite 4085
Atlanta, GA 30309
404-355-3200

or

Digestive Healthcare of GA
134 Mountainside Village Parkway
Building 500
Jasper, GA 30143
(706) 253-7340

http://digestivehealthcare.net/doctors/ ... s_bio.html

And in Tennessee, there is:

Dr. Jeffrey Fenyves
Center for Digestive Wellness
10461 Wallace Alley Drive
Kingsport TN 37663
(423) 279-1400

http://www.digestivewellness.net/pages/us_phys_prov.htm

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by C.U.B. girl »

Thanks for sharing that, Tex! Interestingly, the guy I saw is in the same practice with Dr. Galambos (I went to the Jasper office since I happen to live in Jasper). Wish I had seen him before I made an appt. with Dr.-know-nothing….. I wonder how much doctors in the same practice confer with one another? And if a colleague's previous diagnosis and treatment would affect his/her recommendations for the same patient? Doctors, being only human, may defer to their colleague's prior assessment of the patient's condition in an attempt to avoid inter-office conflict, rather than formulating their own treatment plan. That would be my only concern with seeing Dr. Galambos -- I'd be wondering how much influence the previous doc's work-up had on his own assessment of my situation….

Or maybe I'll ditch them both and drive an hour to see Dr. Cameron…. :grin:
Cindy
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2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
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Post by tex »

I'm pretty sure that your concerns are right on target, because I believe that most specialists within an organization not only consult, but they typically follow certain "house" rules (because of insurance considerations, policies established by department heads, etc.). For example, I've never been to the Mayo, but I believe that I have a very good understanding of what to expect if I ever did decide to go to any of the specialists there in the gastroenterology department, based on reading their published research, their website "blogs", and what other members here have posted about their personal experiences at the Mayo. I'm sure there might be minor differences in treatment, due to individual personalities, but in general, the overall treatment program for MC would surely follow almost exactly the same pattern, regardless of which GI doc I saw.

And in small practice groups especially, most doctors would not be willing to accept a patient who was dissatisfied with another practitioner in the group, in order to prevent any hard feelings by colleagues. Some specialists seem to extend this policy to entire regions, on the pretense of observing professional courtesy. But the real motivation is probably punitive — designed to punish "unruly" patients who would dare to question any specialist's qualifications.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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