It’s been a Fall…
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
It’s been a Fall…
At the beginning of August I was a completely healthy 66 year old male. No significant medical issues. At the end of August, I tested positive for Covid. I was given Paxlovid. Improved then rebounded with Covid and Covid pneumonia. The coughing from the pneumonia led to a completely detached retina. My lungs are better but my doctor has put me on an albuteral inhaler to help with ongoing symptoms. I have regained what I call fun house vision in my eye. During the past eight weeks I have had watery diarrhea 10 to 25 times a day. Numerous ideas and treatments with no success. I had an EGD and colonoscopy this past week. Gastritis in stomach and upper small intestine. My doctor suspected MC. Biopsies were taken and the “My Chart” results show me positive for LC. What topics are most important for me to discuss with my doctor about 5hi# result?
Re: It’s been a Fall…
That's an open-ended question that could result in enough information to write a book. MC is a complex disease, so answering that question adequately in this post is a tall order. First you have to decide whether you want to go the medical route, and rely on powerful medications for the rest of your life, or use diet changes to control the disease (with or without medications).
The most useful medication for treating MC is budesonide. Without diet changes, published research shows that over 80% of patients who respond to budesonide typically relapse. After another failed attempt or two using corticosteroids, most gastroenterologists these days will recommend a biological, which is an immune system suppressant. If it works, it will probably stop working after a few years, or create an allergy, which in either case, requires switching to another drug.
In other words, the biggest problem with going the medical route, is that all medical treatments provide only temporary relief, and carry a risk of life-threatening infections or the development of some other health issue, and of course, these medical treatments are very expensive.
If you choose to go the diet change route, it requires much more work and dedication, of course (because we have to avoid our food sensitivities 100%), but the expense is relatively negligible and the health risks are virtually zero (no side effects). But unfortunately, most gastroenterologists know very little about controlling MC by diet changes, and many of them will deny that it works (for one thing, they lose all that income that providing extended care for patients generates).
And finally, unfortunately, most gastroenterologists are either unable, or unwilling to waste much (or any) of their time carefully explaining the details of the disease to their patients, because they really don't understand the disease very well, in the first place; and the medical system "red tape" is so extensive these days, that they can hardly afford the time, anyway. Hopefully, you will be more fortunate, and your doctor will be more knowledgeable, and willing to go into more detail about treatment options (and their possible side effects).
If you will give me some clues regarding your goals for dealing with this disease, I'll be happy to go into more detail about your options. It would be great if the medical treatment route allowed patients to simply pop a pill each day, and get on with their lives, but unfortunately, that isn't the case.
Welcome to the group, and please feel free to ask anything.
Tex
The most useful medication for treating MC is budesonide. Without diet changes, published research shows that over 80% of patients who respond to budesonide typically relapse. After another failed attempt or two using corticosteroids, most gastroenterologists these days will recommend a biological, which is an immune system suppressant. If it works, it will probably stop working after a few years, or create an allergy, which in either case, requires switching to another drug.
In other words, the biggest problem with going the medical route, is that all medical treatments provide only temporary relief, and carry a risk of life-threatening infections or the development of some other health issue, and of course, these medical treatments are very expensive.
If you choose to go the diet change route, it requires much more work and dedication, of course (because we have to avoid our food sensitivities 100%), but the expense is relatively negligible and the health risks are virtually zero (no side effects). But unfortunately, most gastroenterologists know very little about controlling MC by diet changes, and many of them will deny that it works (for one thing, they lose all that income that providing extended care for patients generates).
And finally, unfortunately, most gastroenterologists are either unable, or unwilling to waste much (or any) of their time carefully explaining the details of the disease to their patients, because they really don't understand the disease very well, in the first place; and the medical system "red tape" is so extensive these days, that they can hardly afford the time, anyway. Hopefully, you will be more fortunate, and your doctor will be more knowledgeable, and willing to go into more detail about treatment options (and their possible side effects).
If you will give me some clues regarding your goals for dealing with this disease, I'll be happy to go into more detail about your options. It would be great if the medical treatment route allowed patients to simply pop a pill each day, and get on with their lives, but unfortunately, that isn't the case.
Welcome to the group, and please feel free to ask anything.
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.
Re: It’s been a Fall…
I’m not a big take drugs to fix things long term person. I am gonna start the Budesonide tomorrow. However, I see that as a way to calm this down not a long term solution.
Re: It’s been a Fall…
Budesonide usually brings results quickly. Published research shows that over 80% of MC patients who respond to budesonide relapse after the treatment is ended. You can prevent that relapse by beginning an elimination diet when you begin the budesonide treatment, and if you slowly wean off the budesonide at the end of the treatment, you should be able to remain in remission. At least that seems to work for most of us. Good luck with your recovery.
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.