Tex,
I gave my g.i. doc your book in September. He swore he'd read it! I was so happy! I thought I had found a doc I could partner with to manage my disease. Then on 12/22, I saw him again. He had not read the book. He blew off the connection between gluten and MC. He just wants to shove pills at me. I need a new doc! I had a very severe allergic reaction to Balsalizide Disodium. His office women would not pass on my calls to him. He scolded me for not letting me know the drug was causing problems! I took it for 7 months and was so sick I thought I would end up in the hospital! One week off the drug, I was down to 3 trips to the throne a day! That was down from 50-60 trips! Now he wants me to take Colestipol. I'm not taking it! I have no confidence in this doc! HELP! OH, by the way, he informed me that MC can go away by itself. And it is MY decision to go gluten free, NOT his! He doesn't think I need to be gluten free. He posted my visit with him on my on-line medical records. UGH! I live in St. Louis. Anyone know of an informed g.i. doc in St. Louis?
Marianne
Today I Heard Words I Never Expected To Hear From A Doctor
Moderators: JFR, Gabes-Apg, grannyh, Gloria, starfire, Polly, Joefnh
Hi Marianne,
I'm sorry to hear that your GI doc is so opposed to learning how to properly treat MC, but that's still a very common problem in this country, unfortunately. And I'm afraid that I'm not aware of any GI specialists in your part of the U. S. who have been recommended by other members here. Most who are recommended seem to be concentrated in the eastern states, though a few others are scattered here and there.
Doctors who try to shift blame to patients usually do so because of their own failings. His office staff's failure to pass on your messages to him borders on criminal behavior. Shame on them, and shame on him for tolerating that kind of behavior.
Sometimes bile acid sequestrants such as Colestipol are successful in stopping diarrhea in MC patients, but unfortunately it doesn't seem to work for most patients. Most bile acid sequestrants contain one or more inactive ingredients that many MC patients cannot tolerate.
These days, the favored medical treatment (by most GI specialists) is budesonide (Entocort). Balsalide Disodium is what's known as a prodrug, and after it reaches the colon the digestive system cleaves mesalamine from it to treat intestinal inflammation. But mesalamine is no longer recommended except for MC patients who cannot tolerate budesonide. And since it's a prodrug, with potential side effects (such as you experienced) from the other compounds that result when the digestive system digests it, I'm surprised that he prescribed it. It's not a good first choice for treating MC. You can find a list of the current guidelines issued by the American Gastroenterological Association Institute for the medical management of microscopic colitis near the bottom of the page at this link:
http://www.microscopiccolitisfoundation ... tions.html
Yes, there are occasional cases where spontaneous remission has occurred with some MC patients, but unfortunately those of us here have never been that lucky.
I hope that you can find a better doctor.
Tex
I'm sorry to hear that your GI doc is so opposed to learning how to properly treat MC, but that's still a very common problem in this country, unfortunately. And I'm afraid that I'm not aware of any GI specialists in your part of the U. S. who have been recommended by other members here. Most who are recommended seem to be concentrated in the eastern states, though a few others are scattered here and there.
Doctors who try to shift blame to patients usually do so because of their own failings. His office staff's failure to pass on your messages to him borders on criminal behavior. Shame on them, and shame on him for tolerating that kind of behavior.
Sometimes bile acid sequestrants such as Colestipol are successful in stopping diarrhea in MC patients, but unfortunately it doesn't seem to work for most patients. Most bile acid sequestrants contain one or more inactive ingredients that many MC patients cannot tolerate.
These days, the favored medical treatment (by most GI specialists) is budesonide (Entocort). Balsalide Disodium is what's known as a prodrug, and after it reaches the colon the digestive system cleaves mesalamine from it to treat intestinal inflammation. But mesalamine is no longer recommended except for MC patients who cannot tolerate budesonide. And since it's a prodrug, with potential side effects (such as you experienced) from the other compounds that result when the digestive system digests it, I'm surprised that he prescribed it. It's not a good first choice for treating MC. You can find a list of the current guidelines issued by the American Gastroenterological Association Institute for the medical management of microscopic colitis near the bottom of the page at this link:
http://www.microscopiccolitisfoundation ... tions.html
Yes, there are occasional cases where spontaneous remission has occurred with some MC patients, but unfortunately those of us here have never been that lucky.
I hope that you can find a better doctor.
Tex
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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dolson
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Tex
Great News, Tex. Doctors don't realize they learn from their patients. They go to medical school, but the real learning is treating and learning from their patients. That's the key. When I meet a doctor who does not listen and is a know it all, they tend to feel uncomfortable in their own skin. I don't return. There is not one GI specialist in Savannah, I would touch. I am looking for a doctor because my husband is getting concerned. 90% of my life is diarrhea and undigsted food. It has to stop.
I saw this same thing happen to our Dystonia group. Neurologists were itching to get on board with Howard Thiel who started our support group. He had an insurance company and developed Spasmodic Torticollis. We had many neurologists who wrote articles and helped patients. That could happen to us, Tex!
I've read books Dr. Fine has recommended and got confused, but yours is the best Tex! Easy to read, understand and I enjoyed it. I don't think you realize how important you are and you have helped many! I applaud you!!!!!!!!! Dorothy Olson Williams
I saw this same thing happen to our Dystonia group. Neurologists were itching to get on board with Howard Thiel who started our support group. He had an insurance company and developed Spasmodic Torticollis. We had many neurologists who wrote articles and helped patients. That could happen to us, Tex!
I've read books Dr. Fine has recommended and got confused, but yours is the best Tex! Easy to read, understand and I enjoyed it. I don't think you realize how important you are and you have helped many! I applaud you!!!!!!!!! Dorothy Olson Williams
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diansquash
- Posts: 2
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Re: Today I Heard Words I Never Expected To Hear From A Doctor
Tex, I am so happy that you found a great AGREEABLE doctor who understands your diet. I bet he even APPRECIATES YOUR CONTRIBUTION to his family. I am sorry it took so long to find him. Thank you for your helpful suggestions on my diet questions. Thank you for writing your book. It gave me hope, and connected me to Enteroch lab.
diansquash
diansquash
Re: Today I Heard Words I Never Expected To Hear From A Doctor
You're very welcome. I appreciate your kind words. I hope that your recovery continues to go as smoothly as possible.
Tex
Tex
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.