Started Xifaxan
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wayne,
Yep, that definitely was nice of your doc to provide the Xifaxan. I'm sorry to hear that the treatment doesn't seem to be helping, yet, though. I'll keep my fingers crossed that it's just a "late bloomer", and it may still take effect before the 10 days are over.
Thanks for the update, and good luck.
Tex
Yep, that definitely was nice of your doc to provide the Xifaxan. I'm sorry to hear that the treatment doesn't seem to be helping, yet, though. I'll keep my fingers crossed that it's just a "late bloomer", and it may still take effect before the 10 days are over.
Thanks for the update, and good luck.
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.
Man! It's always something, isn't it. Sorry to hear about the flu. If there's one thing that can screw up a train wreck, it's a good/bad case of the flu. Good for your doctor, for rounding up another batch of the Xifaxan, for you to try.
Good luck, (hopefully nothing will derail the treatment, this time.
Tex
Good luck, (hopefully nothing will derail the treatment, this time.
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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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Wayne,
So sorry to hear about the flu and that you have to start from scratch again. Kudos though to your GI for getting you samples and understanding the insurance issue. Good luck and hope it works for you and that you get back to 100% real soon.
Love, Maggie
So sorry to hear about the flu and that you have to start from scratch again. Kudos though to your GI for getting you samples and understanding the insurance issue. Good luck and hope it works for you and that you get back to 100% real soon.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Oh Wayne,
So sorry to hear about your continuing problems. The GI might be the "expert", but the bottom line is YOU - and your intuition is telling you not to take so many antibiotics and that doing so only provides a temporary solution. I'd put my money on your intuition any time - there is no substitute for it. I am a firm believer that we must always listen to our "inner voice".
A thought......have you tried going gluten-free, with or without Entocort? I am asking because these are the two treatments around here that seem to give the biggest bang for the buck. There is lots of help available here if you decide to pursue the diet route. It does involve a lifestyle change and does take time (months), but it just might be the solution for you. I hate to see you still suffering so much.
Love,
Polly
So sorry to hear about your continuing problems. The GI might be the "expert", but the bottom line is YOU - and your intuition is telling you not to take so many antibiotics and that doing so only provides a temporary solution. I'd put my money on your intuition any time - there is no substitute for it. I am a firm believer that we must always listen to our "inner voice".
A thought......have you tried going gluten-free, with or without Entocort? I am asking because these are the two treatments around here that seem to give the biggest bang for the buck. There is lots of help available here if you decide to pursue the diet route. It does involve a lifestyle change and does take time (months), but it just might be the solution for you. I hate to see you still suffering so much.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Wayne,
Concerning gluten in the workplace: I work on a farm, and grow wheat and corn. I have a cleaning plant, where I primarily clean and bag corn, but in the past, I have often cleaned wheat seed for neighbors, (for planting seed, primarily), and every year, I store wheat, in large grain bins. In fact, wheat harvest will probably begin here, in a few days.
When unloading or loading wheat, (especially if it is not cleaned), and during the cleaning process, (as it flows through all the machinery), it's impossible not to inhale wheat gluten, and get it on your skin, because cracked grain creates particles of what is the equivalent of wheat flour, and while it can be minimized, (by dust collection equipment), it cannot be totally eliminated from the air, and at certain stages, (while loading or unloading it, and adjusting equipment, etc.), the amount of dust exposure can be significant.
I have never had a bit of trouble with reactions, because of my work around it. However, I am very careful not to lick my lips, (or eat or drink anything), without washing my hands and face, first, after working with wheat. Your exposure risk should be minuscule, compared with this.
As for the effectiveness of the diet, (or the diet plus Entocort), I'll let the results posted here, by so many members, vouch for that. I certainly agree with Polly, though, it's your body, and how you choose to treat it is strictly your decision, whether you choose to follow your doc's program fully, partially, or not at all. It's a tough decision that we all must make for ourselves, for better or for worse, and whatever route you choose to follow, we fully support you, and we will certainly try to help in any way we can.
Tex
Concerning gluten in the workplace: I work on a farm, and grow wheat and corn. I have a cleaning plant, where I primarily clean and bag corn, but in the past, I have often cleaned wheat seed for neighbors, (for planting seed, primarily), and every year, I store wheat, in large grain bins. In fact, wheat harvest will probably begin here, in a few days.
When unloading or loading wheat, (especially if it is not cleaned), and during the cleaning process, (as it flows through all the machinery), it's impossible not to inhale wheat gluten, and get it on your skin, because cracked grain creates particles of what is the equivalent of wheat flour, and while it can be minimized, (by dust collection equipment), it cannot be totally eliminated from the air, and at certain stages, (while loading or unloading it, and adjusting equipment, etc.), the amount of dust exposure can be significant.
I have never had a bit of trouble with reactions, because of my work around it. However, I am very careful not to lick my lips, (or eat or drink anything), without washing my hands and face, first, after working with wheat. Your exposure risk should be minuscule, compared with this.
As for the effectiveness of the diet, (or the diet plus Entocort), I'll let the results posted here, by so many members, vouch for that. I certainly agree with Polly, though, it's your body, and how you choose to treat it is strictly your decision, whether you choose to follow your doc's program fully, partially, or not at all. It's a tough decision that we all must make for ourselves, for better or for worse, and whatever route you choose to follow, we fully support you, and we will certainly try to help in any way we can.
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.
Wayne,
I too wanted to believe that the trusted traditional medical doctor would cure me with meds. Everytime I took an antibiotic from the ttmd I would get worse. You said you actually got better. That's interesting. If if were me I would insist on having the small intestinal bacterial overgrowth (SIBO) hydrogen breath test before I would take anymore antibiotics. It is a shot in the dark without it, but you have to do what works for you.
Have you had the Enterolab tests? My ttmd did have me do those tests.
I sort of understand where you are. I even bailed on the diet even after I had the results of the Enterolab tests. It's very difficult to go GF and many others if necessary but doable! (Is that a word?)
Good Luck!
Pat
I too wanted to believe that the trusted traditional medical doctor would cure me with meds. Everytime I took an antibiotic from the ttmd I would get worse. You said you actually got better. That's interesting. If if were me I would insist on having the small intestinal bacterial overgrowth (SIBO) hydrogen breath test before I would take anymore antibiotics. It is a shot in the dark without it, but you have to do what works for you.
Have you had the Enterolab tests? My ttmd did have me do those tests.
I sort of understand where you are. I even bailed on the diet even after I had the results of the Enterolab tests. It's very difficult to go GF and many others if necessary but doable! (Is that a word?)
Good Luck!Pat
Wayne,
I guess I would go with what works and what was best for my body. If the treatment your GI prescribed worked, then that would be great. But it sure sounds like it's not working. It sounds like he's taking a shot in the dark and you're the guinea pig. I hate to write that, but unfortunately we've seen that happen in too many cases here.
I don't think many GIs support treating this disease with diet. They want a treatment that will work for everyone. They will prescribe Entocort because it's been shown to work for a majority of the patients who take it. But it's almost impossible for a GI to prescribe a diet tailored to each patient's specific intolerances. Look how many different intolerances we have among this board. After talking to my GI, I realized that I would be responsible for managing this disease and only I could determine what my intolerances are.
It ultimately is your decision. I don't think that going gluten-free is that difficult. There are so many GF products available that it just seems like a minor inconvenience. It takes determination, but if it gives you your life back, it's worth it.
Good luck in whatever treatment you pursue. We are here to support you in any way we can.
Gloria
I guess I would go with what works and what was best for my body. If the treatment your GI prescribed worked, then that would be great. But it sure sounds like it's not working. It sounds like he's taking a shot in the dark and you're the guinea pig. I hate to write that, but unfortunately we've seen that happen in too many cases here.
I don't think many GIs support treating this disease with diet. They want a treatment that will work for everyone. They will prescribe Entocort because it's been shown to work for a majority of the patients who take it. But it's almost impossible for a GI to prescribe a diet tailored to each patient's specific intolerances. Look how many different intolerances we have among this board. After talking to my GI, I realized that I would be responsible for managing this disease and only I could determine what my intolerances are.
It ultimately is your decision. I don't think that going gluten-free is that difficult. There are so many GF products available that it just seems like a minor inconvenience. It takes determination, but if it gives you your life back, it's worth it.
Good luck in whatever treatment you pursue. We are here to support you in any way we can.
Gloria
You never know what you can do until you have to do it.