How can I live a normal life with this?
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How can I live a normal life with this?
Hi everyone. I hope everyone is doing well. I haven't posted in a long time, but still read posts. I am one of the rare cases, I guess, that cannot gain control of my symptoms. I have literally tried just about everything. If anything, my symptoms are getting progressively worse. I cannot try Enticort because I have no insurance and can't afford it. I have done strict elimination diets, etc. (I know this doesn't make sense, but I seem to do better when I eat yogurt and breads, ie. dairy and gluten) I'm never good though. I was in a spontaneous remission back in October of 2011 that lasted about ten days. It happened overnight and went away just as fast. Now I'm worried. I have lost my job because of this and have been unemployed for some time. I would like any advice on how any of you are living with this. It absolutely controls every aspect of my life. Some days I only have 5 or 10 "episodes" of watery D, others it's up to 20 or 30 times. The only thing that thickens it from being watery is Metamucil wafers. High dose pepto really messed me up. It happens whether I eat or not. I'm constantly exhausted. I'm a 40 year old man who weighs about 100 lb, and I'm losing more. I just don't know what to do. I need to work, but don't think I can. My last employer tried to work with me I'm sure, but I understand they can't. I'm just so lost right now. In extreme cases like this, what can I do? On top of that, I don't think my family fully appreciates how bad this is for me. I'm trying to gain some kind of control over my life, but the symptoms and fear are overwhelming me!
Hi Rhyes,
I'm sorry to hear that you've been unable to gain control of your symptoms. You're not the first to report that you seem to do better when you eat gluten and/or dairy. Those foods contain gluteomorphins and casomorphins, respectively, which actually have an addictive effect on the brain. The effects are much stronger for some of us than for others, but the basic result is that they trigger a "reward" response in the brain, similar to opiates, when we eat them.
Of course they might also make you feel better because you are short of nutrition and energy.
To cut to the chase, it can take a long time for the body to stop reacting after gluten is removed from the diet. Also, ALL food sensitivities must be removed from the diet, 100 % (all of the time), in order for the gut to make any healing progress. Unless you have been meticulously avoiding all of your food sensitivities (without any slip ups) for at least 6 months to a year, you may just need more time for your intestines to heal. Every time you eat gluten for a few days, the healing has to start over, not necessarily all the way back to square one, but far enough back to undo most of the good that has been done with weeks or months of careful dieting. So experimenting with gluten especially, creates a huge setback in your recovery treatment.
Metamucil may thicken watery D, but in general, fiber is contraindicated for MC. Fiber tends to irritate our intestines when they are already ultrasensitive because of the inflammation, so fiber can slow down or prevent healing, in many/most cases.
As you are probably aware, the fastest way to get your symptoms under control so that you can go back to work while the diet is healing your intestines, is to take Entocort EC (budesonide). I'm not sure if you are aware of this, but most members here who do not have insurance, or those who have insurance that has a big copay amount, order generic budesonide from either a Canadian or an Indian pharmacy, at a tiny fraction of the cost of the drug in this country. Canadian pharmacies sell the exact same product as the Indian pharmacy (Budez CR), except that they mark it up by 40 %, so apparently they order it from the Indian pharmacy, also. The cost of a 3-month supply of Budez CR (270 capsules) is $121.50 (in U. S. dollars), plus shipping. Shipping can take 2 to 3 weeks (since it has to go through Customs when it arrives in this country), and shipping will probably cost $25 to $35 (I'm guessing). Canadian pharmacies require a prescription, but the Indian pharmacy does not (because a doctor's prescription is only valid within the country where a doctor is licensed to practice, so it is worthless across borders). Don't order more than a 3-month supply of any drug from any overseas pharmacy, because Customs will assume that larger orders are going to a dealer for resale, and they will confiscate the order if a drug import license is not provided. Here's a link to the product description at the Indian pharmacy:
https://www.alldaychemist.com/1447-budez-cr-3mg.html
And you're right, most of our families don't understand what we are going through when our MC is active.
Controlling this disease by diet requires extreme attention to detail (to avoid all traces of our food and/or drug sensitivities), the patience of Job, and all the perseverance we can muster. But it is still the only practical way to get our life back, in the long term. Drugs can help to control the symptoms, but only diet changes can heal the gut.
Good luck with this, and please keep us posted.
Tex
I'm sorry to hear that you've been unable to gain control of your symptoms. You're not the first to report that you seem to do better when you eat gluten and/or dairy. Those foods contain gluteomorphins and casomorphins, respectively, which actually have an addictive effect on the brain. The effects are much stronger for some of us than for others, but the basic result is that they trigger a "reward" response in the brain, similar to opiates, when we eat them.
Of course they might also make you feel better because you are short of nutrition and energy.
To cut to the chase, it can take a long time for the body to stop reacting after gluten is removed from the diet. Also, ALL food sensitivities must be removed from the diet, 100 % (all of the time), in order for the gut to make any healing progress. Unless you have been meticulously avoiding all of your food sensitivities (without any slip ups) for at least 6 months to a year, you may just need more time for your intestines to heal. Every time you eat gluten for a few days, the healing has to start over, not necessarily all the way back to square one, but far enough back to undo most of the good that has been done with weeks or months of careful dieting. So experimenting with gluten especially, creates a huge setback in your recovery treatment.
Metamucil may thicken watery D, but in general, fiber is contraindicated for MC. Fiber tends to irritate our intestines when they are already ultrasensitive because of the inflammation, so fiber can slow down or prevent healing, in many/most cases.
As you are probably aware, the fastest way to get your symptoms under control so that you can go back to work while the diet is healing your intestines, is to take Entocort EC (budesonide). I'm not sure if you are aware of this, but most members here who do not have insurance, or those who have insurance that has a big copay amount, order generic budesonide from either a Canadian or an Indian pharmacy, at a tiny fraction of the cost of the drug in this country. Canadian pharmacies sell the exact same product as the Indian pharmacy (Budez CR), except that they mark it up by 40 %, so apparently they order it from the Indian pharmacy, also. The cost of a 3-month supply of Budez CR (270 capsules) is $121.50 (in U. S. dollars), plus shipping. Shipping can take 2 to 3 weeks (since it has to go through Customs when it arrives in this country), and shipping will probably cost $25 to $35 (I'm guessing). Canadian pharmacies require a prescription, but the Indian pharmacy does not (because a doctor's prescription is only valid within the country where a doctor is licensed to practice, so it is worthless across borders). Don't order more than a 3-month supply of any drug from any overseas pharmacy, because Customs will assume that larger orders are going to a dealer for resale, and they will confiscate the order if a drug import license is not provided. Here's a link to the product description at the Indian pharmacy:
https://www.alldaychemist.com/1447-budez-cr-3mg.html
And you're right, most of our families don't understand what we are going through when our MC is active.
Controlling this disease by diet requires extreme attention to detail (to avoid all traces of our food and/or drug sensitivities), the patience of Job, and all the perseverance we can muster. But it is still the only practical way to get our life back, in the long term. Drugs can help to control the symptoms, but only diet changes can heal the gut.
Good luck with this, and please keep us posted.
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.
Rhyes
I am so sorry things are so bad for you. This darned MC is just the pits. When I read your post the word disability popped into my head. I did a Potty People search and this is one hit. I don't know how it relates after the fact...........
http://perskyfarms.com/phpBB2/viewtopic ... disability
http://perskyfarms.com/phpBB2/viewtopic ... disability
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan