I had the consult with Dr. Alyssa Parian at Johns Hopkins Bayview Gastroenterology Dept. yesterday. I found her informed, innovative, and open. She wants me to have the test for Small Intestinal Bowel Overgrowth to rule it out. If positive it will be treated with Xifaxan a non-absorbable antibiotic. The plan is to continue Boswellia for 6 weeks. Try an antihistamine for 3 days to see if this helps (will act on Mast cells). She also gave me a prescription to try Low Dose Naltraxone(LDN) 1.25 mg daily for 30 days and to then increase by 0.5 mg every 2 weeks. Depending on how things progress, for the future, things to be considered are: Florastor (Saccharomyces), Ecoli Nissle 1917, Plantago ovata, Colestid, retrial of Pepto Bismol at a lower dose, consider adding mesalamine back n (Lialda or Asacol), & Wheatgrass juice. I will be researching the ones I'm not familiar with.
She did recommend stopping the Magnesium supplements as this can lead to worse diarrhea and to decrease the amount of vitamin D (5000 IU) I'm taking from daily to weekly.
She also wants to get the pathology slides from my Nov 2014 Colonoscopy to confirm Lymphocytic Colitis vs. Crohn's which was my original diagnosis from 1990 to 2010. Prior colonoscopies showed terminal ileum inflammation consistent with Inflammatory Bowel Disease. She said, while not unheard of, it is rare for a 34 year old to have Lymphocytic Colitis. That's the age I was when all this started. She is checking Prometheus (?) to make certain I haven't had an IBD-7 protocol to rule in/out IBD. If not, she will order that test.
Dr. Parian was on board with all the dietary changes and didn't look at me like I had two heads when I inquired about alternatives. Very cool!
It was so refreshing to meet with a Gastro Doc who is not only open to, but aware of and actually testing, innovative approaches! I look forward to working with her on this journey.
Innovative Informed Gastro Doc - They Do Exist!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I can't let that comment go unchallenged. We have many, many members here who were diagnosed when in their 30s. It most definitely is not rare for someone in their 30s to have MC.She said, while not unheard of, it is rare for a 34 year old to have Lymphocytic Colitis.
She seems willing to try virtually anything as a treatment. I'm not sure that's good or bad, because it makes you (the patient) a guinea pig while she learns about the disease.
That said, it is indeed refreshing to be able to work with such an open-minded GI specialist. You have the right idea — do your homework, and be careful if you try a treatment that you are not sure of.
Good luck with your program.
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.
Well, this was a creative GI! I agree with Tex that you should do some research on these treatments yourself before you embark on them.
When it comes to e. coli Nissle 1917 (Mutaflor) there is a lot of evidence indicating that it can be efficient for treating ulcerative colitis and other diarrhea dominant diseases. It's probably the best studied and most potent probiotic there is (with the possible exception of VSL#3). A study has even been performed on treatment for collagenous colitis: http://europepmc.org/abstract/med/15136935
I have considered trying Mutaflor myself, but this study demoralized me a bit: http://www.tandfonline.com/doi/abs/10.4 ... TgqYyHtlBc This is the only article I've found that questions the safety of Mutaflor, but anyway ... I have read that Mutaflor has been removed from the US market because the FDA thinks it has to be reviewed as a drug and not a food supplement.
Colestid is a bile acid sequestrant. Up to 44 % with MC has concurrent bile acid malabsorption, possibly due to inflammation in the terminal ileum. MC patients often responds to bile acid binders, even without bile acid malabsorption. I have used another bile acid binder, cholestyramine, myself. The safety of long term treatment with Entocort has not been well studied, and cholestyramine has allowed me to stop Entocort for months at a time. There are no controlled studies of treatment of MC with bile acid binders, but Danish researchers try to fund such a study now.
The research I've read indicates that 1/4 of the people diagnosed with MC are below 45 years old, and 1/4 are men. This is often presented as MC is a disease mostly seen in elderly women. A self-fullfilling prophecy?
Best Regards,
Tor
When it comes to e. coli Nissle 1917 (Mutaflor) there is a lot of evidence indicating that it can be efficient for treating ulcerative colitis and other diarrhea dominant diseases. It's probably the best studied and most potent probiotic there is (with the possible exception of VSL#3). A study has even been performed on treatment for collagenous colitis: http://europepmc.org/abstract/med/15136935
I have considered trying Mutaflor myself, but this study demoralized me a bit: http://www.tandfonline.com/doi/abs/10.4 ... TgqYyHtlBc This is the only article I've found that questions the safety of Mutaflor, but anyway ... I have read that Mutaflor has been removed from the US market because the FDA thinks it has to be reviewed as a drug and not a food supplement.
Colestid is a bile acid sequestrant. Up to 44 % with MC has concurrent bile acid malabsorption, possibly due to inflammation in the terminal ileum. MC patients often responds to bile acid binders, even without bile acid malabsorption. I have used another bile acid binder, cholestyramine, myself. The safety of long term treatment with Entocort has not been well studied, and cholestyramine has allowed me to stop Entocort for months at a time. There are no controlled studies of treatment of MC with bile acid binders, but Danish researchers try to fund such a study now.
The research I've read indicates that 1/4 of the people diagnosed with MC are below 45 years old, and 1/4 are men. This is often presented as MC is a disease mostly seen in elderly women. A self-fullfilling prophecy?
Best Regards,
Tor
Life's hard and then you die