What a Great Site!
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What a Great Site!
Hi- I'm a new member of the MC community, having been diagnosed in November. I've always believed that most of life's issues can be overcome with a positive outlook and sheer grit & determination. That belief is sure being tested these days! I started doing my own research after my frustrations with the uncaring and uninformed attitude of my PCP and GI. The first blog I came across painted such a bleak picture of what life with MC is like that it actually brought me to tears. I am very grateful to have found this site!!! Tho my forecast isn't as bright as it was a year ago, the information here is presented in such a positive, helpful, informed and caring manner that I'm feeling reassured and encouraged. Even tho my mojo has a little dent in it, I am happy to know I will get it back with the help of others who've been there! Thanks for this positive site!
Chris
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Chris,
Welcome to the forum! It is possible to have a good, happy life with MC, and this is the place to learn how. I encourage you to read all you can here, because it will be a lot more helpful than anything you'll hear in the doctor's office. Chronic D is only an "inconvenience" to someone who hasn't experienced it.
What is your treatment regimen right now? Has the doctor given you anything to go on?
Welcome to the forum! It is possible to have a good, happy life with MC, and this is the place to learn how. I encourage you to read all you can here, because it will be a lot more helpful than anything you'll hear in the doctor's office. Chronic D is only an "inconvenience" to someone who hasn't experienced it.
What is your treatment regimen right now? Has the doctor given you anything to go on?
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Chris C!You share the same name as my husband.
I hope you find everything you are looking for here. By now you've probably noticed, the only long-term solution is strict diet manipulation, namely cutting out gluten and dairy, and discovering other food intolerances. I'm in remission after a year and a half of cutting out gluten, dairy, and most soy, and taking a reasonable amount of supplements to support my healing (Vit D3, cal/mag, b-complex, and most recently tumeric/curcumin).I'm on Asacol (3 -400mg tablets 3x/day) and Pepto as needed. I was taking 8-10 doses of Pepto/day just to function but my GI said I should only take as needed. Well, when I don't take the Pepto, I need it! After reading this site, I'm thinking of calling the GI & asking for entocort since I had previously been on NSAIDS for over 15 years for arthritis. Thoughts?
Chris
Are you completely off the NSAIDS now? They are probably the source of your MC. I also take Pepto as needed. I tried the 8/day Pepto regimen, but couldn't keep up with it. It also made me bloated. Even one or 2 tablets makes a difference for me now. I only take it for flares if I get accidental gluten or dairy ingestion.
There are many failed Asacol takers among us. For starters, it contains lactose, which most of us can't tolerate. In general, people here get better results, faster with Entocort, especially if they combine Entocort with the necessary diet changes. Without changing the diet, Entocort simply supresses the symptoms, and they come raging back when you taper off. If you switch, do not take Asacol and Entocort together.
There are many failed Asacol takers among us. For starters, it contains lactose, which most of us can't tolerate. In general, people here get better results, faster with Entocort, especially if they combine Entocort with the necessary diet changes. Without changing the diet, Entocort simply supresses the symptoms, and they come raging back when you taper off. If you switch, do not take Asacol and Entocort together.
Hi Chris,
Welcome to our internet family. Yes, you can get your life back.
Since you are already taking a lot of Pepto, apparently you can tolerate that dose, so if I were in your shoes, I would immediately cut all gluten and dairy products out of my diet, and continue taking 8 or 9 Pepto-Bismol tablets per day, for a total of 8 weeks. That treatment is proven to be at least 90% effective at bringing remission, and if you maintain the diet, the remission should be stable. If you are taking Pepto, you're better off without the Asacol, as Zizzle mentioned.
If that treatment should fail, then Entocort would be the next option to try. Remember that drugs can help to suppress the symptoms, but diet changes are the key to eliminating the inflammation that causes MC. If you can reach remission without Entocort, you will be better off, because corticosteroids retard healing, and it takes a long time for the gut to heal from the damage caused by gluten, (years) - it takes a lot longer, with a corticosteroid.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Yes, you can get your life back.
Since you are already taking a lot of Pepto, apparently you can tolerate that dose, so if I were in your shoes, I would immediately cut all gluten and dairy products out of my diet, and continue taking 8 or 9 Pepto-Bismol tablets per day, for a total of 8 weeks. That treatment is proven to be at least 90% effective at bringing remission, and if you maintain the diet, the remission should be stable. If you are taking Pepto, you're better off without the Asacol, as Zizzle mentioned.
If that treatment should fail, then Entocort would be the next option to try. Remember that drugs can help to suppress the symptoms, but diet changes are the key to eliminating the inflammation that causes MC. If you can reach remission without Entocort, you will be better off, because corticosteroids retard healing, and it takes a long time for the gut to heal from the damage caused by gluten, (years) - it takes a lot longer, with a corticosteroid.
Again, welcome aboard, 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.
Thanks for all of the feedback. I'm hesitant to start on the GF diet since I'm traveling to Mexico in a few weeks and will struggle with maintaining that diet. From what I've read here, once you're weaned off some of the foods, if you ingest them (accidentally or otherwise), the result is not pretty. I could have picked a destination with milder foods for my first post-diagnosis trip.......and I've been off NSAIDS for 3 months now.
Chris,
It's actually easier to eat GF in Latin America than in the USA. There's always plenty of rice, beans, corn tortillas, corn tamales, tacos, and meats and fish that aren't marinated in all the suspect ingredients used in this country. I had no trouble in Guatemala, and I eat lots of latin-inspired foods here. Of course you'll be at risk of GI infections while you're there, so all food must be cooked, even fruit, unless it can be peeled (i.e. bananas, mangoes, avocado). Salads, lettuce, tomatoes are off-limits (for MC too!). I travel with lots of GF fruit and nut bars, since there will be times when there is nothing you can eat. If you start the GF diet now and notice results, you'll have a much more enjoyable trip, no?
In my case, I had vast improvement just days after starting the GF diet. But for others it can take weeks or months.
Incidentally, my GF mother-in-law is in Cozumel, Mexico as we speak at an all-inclusive timeshare resort, and she says she's had no trouble sticking to the GF diet.
It's actually easier to eat GF in Latin America than in the USA. There's always plenty of rice, beans, corn tortillas, corn tamales, tacos, and meats and fish that aren't marinated in all the suspect ingredients used in this country. I had no trouble in Guatemala, and I eat lots of latin-inspired foods here. Of course you'll be at risk of GI infections while you're there, so all food must be cooked, even fruit, unless it can be peeled (i.e. bananas, mangoes, avocado). Salads, lettuce, tomatoes are off-limits (for MC too!). I travel with lots of GF fruit and nut bars, since there will be times when there is nothing you can eat. If you start the GF diet now and notice results, you'll have a much more enjoyable trip, no?
In my case, I had vast improvement just days after starting the GF diet. But for others it can take weeks or months.
Incidentally, my GF mother-in-law is in Cozumel, Mexico as we speak at an all-inclusive timeshare resort, and she says she's had no trouble sticking to the GF diet.
Chris,
Zizzle is right on target with her comments about Latin American food. Most of the stuff that we encounter in this country, that we think is Mexican, is actually Tex-Mex, and that's why it's so commonly contaminated with gluten.
On the other hand, you're quite correct, that once our anti-gliadin antibody level declines, the immune system does become more sensitive to any accidental gluten ingestion. It usually takes a month or two for that change to develop, though, and in Mexico, it should be much easier to adhere to the diet, than in this country.
Tex
Zizzle is right on target with her comments about Latin American food. Most of the stuff that we encounter in this country, that we think is Mexican, is actually Tex-Mex, and that's why it's so commonly contaminated with gluten.
On the other hand, you're quite correct, that once our anti-gliadin antibody level declines, the immune system does become more sensitive to any accidental gluten ingestion. It usually takes a month or two for that change to develop, though, and in Mexico, it should be much easier to adhere to the diet, than in this country.
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.
Hi Chris,
Have fun on your trip to Mexico! I Agree with both Tex and Zizzle. For gluten free think---steaks, pork, chicken, fish, cooked veggies, potatos, rice, eggs, corn tortilla chips etc not so bad when you think of it.
I'm on entocort now and will be really glad to be off. Entocort really works but according to a lot of posts here those who don't adjust their diet are at a high risk of relapse. For many users there are no side effects. Among side effects are heavy hair loss. I was a user who had/has extreme side effects....hair loss, extreme dizziness, sleep issues, memory issues etc. I'm down to a low dose of one every five days and even now have significant dizziness on the day I take the pill and am working on tapering off. That being said I was in really rough shape when I was diagnosed so I probably needed Entocort.
If I had been diagnosed say 8 or 10 weeks earlier I would have gladly tried diet and pepto for 8 weeks before trying the Entocort.
Also my quality of life has drastically changed since diagnosis in August. I recently went to a bowl game and saw Florida play Ohio State. It was a 10 hour day away from home and I had virtually no bathroom issues. Bathroom issues didn't even cross my mind.
In some ways I have Zizzle to thank for where I am now. Some of the stuff on this web site seemed somewhat "New Agey" but she had posted to someone "Try it, it works." and I was in my 2nd or 3rd week of Entocort going through extreme dizziness so it was kind of like what do I have to lose.
Hope some of this helps and have great fun on the trip! Brandy
Have fun on your trip to Mexico! I Agree with both Tex and Zizzle. For gluten free think---steaks, pork, chicken, fish, cooked veggies, potatos, rice, eggs, corn tortilla chips etc not so bad when you think of it.
I'm on entocort now and will be really glad to be off. Entocort really works but according to a lot of posts here those who don't adjust their diet are at a high risk of relapse. For many users there are no side effects. Among side effects are heavy hair loss. I was a user who had/has extreme side effects....hair loss, extreme dizziness, sleep issues, memory issues etc. I'm down to a low dose of one every five days and even now have significant dizziness on the day I take the pill and am working on tapering off. That being said I was in really rough shape when I was diagnosed so I probably needed Entocort.
If I had been diagnosed say 8 or 10 weeks earlier I would have gladly tried diet and pepto for 8 weeks before trying the Entocort.
Also my quality of life has drastically changed since diagnosis in August. I recently went to a bowl game and saw Florida play Ohio State. It was a 10 hour day away from home and I had virtually no bathroom issues. Bathroom issues didn't even cross my mind.
In some ways I have Zizzle to thank for where I am now. Some of the stuff on this web site seemed somewhat "New Agey" but she had posted to someone "Try it, it works." and I was in my 2nd or 3rd week of Entocort going through extreme dizziness so it was kind of like what do I have to lose.
Hope some of this helps and have great fun on the trip! Brandy
Aww, Brandy, thanks! 
Chris, here's a link to a recent post I made describing easy ways to start the GF/DF diet, what to shop for, etc. I wrote it for a friend of my husband, a former MLB player.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15268
Chris, here's a link to a recent post I made describing easy ways to start the GF/DF diet, what to shop for, etc. I wrote it for a friend of my husband, a former MLB player.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15268
Chris,
Note you probably don't have to go soy free (yet), but you might as well try and reintroduce it when you're feeling better to see how it affects you. You certainly won't find much soy in Mexico! I just avoid major sources of unfermented soy (soymilk, edamame, tofu, texturized vegetable protein, etc.) I still eat small amounts of soy oil, soy lecithin, and GF (wheat-free) soy sauce.
Good luck!
Note you probably don't have to go soy free (yet), but you might as well try and reintroduce it when you're feeling better to see how it affects you. You certainly won't find much soy in Mexico! I just avoid major sources of unfermented soy (soymilk, edamame, tofu, texturized vegetable protein, etc.) I still eat small amounts of soy oil, soy lecithin, and GF (wheat-free) soy sauce.
Good luck!
Glad to know
Glad to know travel can be back in the picture! You guys reflect that great positivity and this is do-able spirit!
Brenda
Brenda