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Not doing well at all
Square one!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Square one!
I guess I never got out of it. Just went to the C side of the square. D is back, with a vengeance. I am off prednisone, will NOT get back on it. The swelling has not yet gone away, but the D is back, alone with weakness, sweats, bloating, cramps, the whole 9 yards.
Not doing well at all
Not doing well at all
Hi Leslie,
I don't remember whether you mentioned this before or not, but is there a chance that you could take Entocort, to tide you over until the diet begins to work for you?
If not, what about the Pepto treatment? It works, so long as you're not sensitive to any of the ingredients. I remember you mentioning that you tried Pepto before, but I don't remember how long you tried it, of why you stopped the treatment. It usually takes 2 to 4 weeks to get results, but it can take longer in some cases.
Tex
I don't remember whether you mentioned this before or not, but is there a chance that you could take Entocort, to tide you over until the diet begins to work for you?
If not, what about the Pepto treatment? It works, so long as you're not sensitive to any of the ingredients. I remember you mentioning that you tried Pepto before, but I don't remember how long you tried it, of why you stopped the treatment. It usually takes 2 to 4 weeks to get results, but it can take longer in some cases.
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 Leslie,
Congratulations on getting off of prednisone. You must have a great deal of determination. I applaud you.
I think Entocort would be helpful, if you can tolerate and afford it. It can be expensive without insurance, but others here have ordered it from overseas for a reasonable cost. In addition to alleviating your D, it may help with the bloating, cramps, etc. Withdrawl from Entocort isn't draconian like it is from prednisone. I have withdrawn from it many times and my only noticible symptom is the return of pain in my finger joints.
I hope you can feel better soon.
Gloria
Congratulations on getting off of prednisone. You must have a great deal of determination. I applaud you.
I think Entocort would be helpful, if you can tolerate and afford it. It can be expensive without insurance, but others here have ordered it from overseas for a reasonable cost. In addition to alleviating your D, it may help with the bloating, cramps, etc. Withdrawl from Entocort isn't draconian like it is from prednisone. I have withdrawn from it many times and my only noticible symptom is the return of pain in my finger joints.
I hope you can feel better soon.
Gloria
You never know what you can do until you have to do it.
Thank you all for your wonderful support, and the invaluable advice!
Tex - I was told to stop pepto because it caused black stools and didn't help the diarrhea. I can take imodium with some benefiber, which does help the diarrhea. Then I get into C mode and never quite know what to do for that. Can you tell me again the names of the generics for entocort please?
Gloria - my GE wanted me to have entocort, and maintains that there is no generic. I guess he doesn't know about getting it from overseas.
It's super expensive because I am in the donut hole, but I will go for it if I can find it cheaper. My other docs encourage me to use meds from abroad.
I am waiting for the results from enterolab to know my sensitivities, and then I will cut it out. I sort of wish I had done the MRT because it seems to be more in depth. I certainly cannot afford both AND the medication.
Gabes - waiting for the vitamins to arrive to start them and (hopefully) get in control of the GERD.
I cannot wait to be in control of my body. It's been so long, and it just gets worse )-;
Tex - I was told to stop pepto because it caused black stools and didn't help the diarrhea. I can take imodium with some benefiber, which does help the diarrhea. Then I get into C mode and never quite know what to do for that. Can you tell me again the names of the generics for entocort please?
Gloria - my GE wanted me to have entocort, and maintains that there is no generic. I guess he doesn't know about getting it from overseas.
It's super expensive because I am in the donut hole, but I will go for it if I can find it cheaper. My other docs encourage me to use meds from abroad.
I am waiting for the results from enterolab to know my sensitivities, and then I will cut it out. I sort of wish I had done the MRT because it seems to be more in depth. I certainly cannot afford both AND the medication.
Gabes - waiting for the vitamins to arrive to start them and (hopefully) get in control of the GERD.
I cannot wait to be in control of my body. It's been so long, and it just gets worse )-;
Yes, I remember you posting that information, but turning the stool black doesn't hurt anything. That's no different than the bile in the stool turning it first green, and then brown. Otherwise it would be pale yellow - but who cares? You're going to dispose of it, anyway.Lesley wrote:Tex - I was told to stop pepto because it caused black stools and didn't help the diarrhea.
The question is, did you try the Pepto long enough to give it a fair trial, (IOW, roughly a month). It's rare for any drug to bring remission in less than a week - it happens, but it's not common. When treating MC, most meds take from 2 to 6 weeks to work. Controlling MC is not like controlling any other disease - it's a major project, not just a matter of popping a few pills.The active ingredient in Entocort EC is budesonide. There are a couple of brands of domestic generic budesonide, but they're only discounted something like roughly 15 or 20% below the price of Entocort EC. It's still prohibitively expensive. Incidentally, there's a wide range of prices for Entocort in this country, depending on where you buy it.
The only way to buy it, if you don't have good insurance, is from on online pharmacy such as at the link below. There, you can buy a 3-month supply, (270 capsules), of generic budesonide for only $121.50 plus shipping. Nothing else will compare for the price, and this stuff works just as well as the name brand product. This is what a bunch of members here are using, because this is a better price than some copays, even with insurance. Shipping is going to cost probably somewhere in the range of $30 to $40, because it has to be shipped by air, from a foreign country, but it's still an unbeatable deal.
https://www.alldaychemist.com/search.ph ... y=entocort
The only caveat is, don't try to order more than a 3-month supply, because if Customs catches it, they will confiscate the shipment, because they will assume that it was ordered by a bootleg dealer. It's illegal for a dealer to import the stuff without special paperwork, licensing, etc. Allow enough time, because it will take at least 2 to 3 weeks to receive it, due to the fact that it will spend most of that time sitting in Customs, waiting for someone to accept it as a legal import, before they send it on for local delivery.
You can order less than a 90-day supply, of course, but I'm guessing that the shipping cost may be virtually the same. I've never ordered any budesonide, but I've imported cell phones that weren't available for sale in this country, and cases and other accessories, etc., and the shipping cost was always in the neighborhood of around 35 bucks, regardless of the value or weight of the package, (for small packages, of course).
The problem with ordering the MRT, rather than the Enterocort tests, is that the MRT result won't even tell you whether you're gluten-sensitive. It's a totally different type of test, that requires a lot of trial and error testing of foods, after you get your test results. Nothing is definite for the MRT results - everything still has to be verified by trial and error testing.
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 Tex.
I have brought in several different meds from abroad. I have never had any trouble. Not so far. Don't ant to jinx it.
Pepto - about 2 weeks. It didn't really help me much, whereas imodium + benefiber does. I don't know about as a treatment, though.
Tell me more about pepto as a treatment, please.
Entocourt - would run me $1000 per MONTH! Thing is once I hit $4000, which I do over a year because of Nexium (which hopefully I won't need anymore!) it's then $30 a month.
Your way is better.
I will write to my doc tomorrow and tell him about it, and that I am going to order it.
I take you point about enterolab and MRT. I will wait until I have the results and try to adjust my diet accordingly.
I realize this is a long term project. I have known that for a long time, since I was dx'd with an autoimmune disease, and a really bad back. I just hoped it would be quicker that it has.
I just want to start on the first step already! With your help of course. I am SO tired. Going to bed.
I have brought in several different meds from abroad. I have never had any trouble. Not so far. Don't ant to jinx it.
Pepto - about 2 weeks. It didn't really help me much, whereas imodium + benefiber does. I don't know about as a treatment, though.
Tell me more about pepto as a treatment, please.
Entocourt - would run me $1000 per MONTH! Thing is once I hit $4000, which I do over a year because of Nexium (which hopefully I won't need anymore!) it's then $30 a month.
Your way is better.
I will write to my doc tomorrow and tell him about it, and that I am going to order it.
I take you point about enterolab and MRT. I will wait until I have the results and try to adjust my diet accordingly.
I realize this is a long term project. I have known that for a long time, since I was dx'd with an autoimmune disease, and a really bad back. I just hoped it would be quicker that it has.
I just want to start on the first step already! With your help of course. I am SO tired. Going to bed.
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lesley
and you have taken your first steps and they are big ones, you are asking questions and seeking information to make decisions about how to live with this crappy disease.
the decisions that we have to make about treatment options and tests etc are governed by what we can afford, and what will suit our lifestyle (work, home, family)
at first there are days with all the symptoms taking their toll on you, and you are feeling poorly, it feels like you have been dropped into the middle of a foreign country where nothing makes sense, and nothing is familiar....
and the things you need to feel better seem hard to obtain,
When i first joined this forum, in one of my first posts, tex told me that I would get my life back, i was feeling so overwhelmed at the time i remember thinking, yeah right, attaining wellness seem so out of reach.
with a bit of time and sticking with an eating plan that works for you, you will tame this crappy condition.... and get your life back
take it one day at a time, you are not alone in a foreign country, we can all speak fluent MC here, (poop, gas, joint aches, foggy brain, fatigue, cramping pain, bloating, GERD, making drastic changes in our lives etc etc)
and you have taken your first steps and they are big ones, you are asking questions and seeking information to make decisions about how to live with this crappy disease.
the decisions that we have to make about treatment options and tests etc are governed by what we can afford, and what will suit our lifestyle (work, home, family)
at first there are days with all the symptoms taking their toll on you, and you are feeling poorly, it feels like you have been dropped into the middle of a foreign country where nothing makes sense, and nothing is familiar....
and the things you need to feel better seem hard to obtain,
When i first joined this forum, in one of my first posts, tex told me that I would get my life back, i was feeling so overwhelmed at the time i remember thinking, yeah right, attaining wellness seem so out of reach.
with a bit of time and sticking with an eating plan that works for you, you will tame this crappy condition.... and get your life back
take it one day at a time, you are not alone in a foreign country, we can all speak fluent MC here, (poop, gas, joint aches, foggy brain, fatigue, cramping pain, bloating, GERD, making drastic changes in our lives etc etc)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
LOL at Gabes comment about us speaking "fluent MC". How true............
Hang in there, Lesley, it WILL get better. I think you did exactly the right move by getting the enterolab tests first. Once you eliminate those sensitive foods, you will be well on your way. I did well for 10 years by doing this, and then used the MRT to fine tune a little more. And I am unique in the multiple sensitivies that I have - most here have FAR fewer.
I do think you'd be a lot more comfortable using the Entocort for a while. You can taper once you have had some time with the elimination diet.
Hugs,
Polly
Hang in there, Lesley, it WILL get better. I think you did exactly the right move by getting the enterolab tests first. Once you eliminate those sensitive foods, you will be well on your way. I did well for 10 years by doing this, and then used the MRT to fine tune a little more. And I am unique in the multiple sensitivies that I have - most here have FAR fewer.
I do think you'd be a lot more comfortable using the Entocort for a while. You can taper once you have had some time with the elimination diet.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dr. Fines original published trials with the Pepto-Bismol treatment showed an 85 to 90% rate of resolution of diarrhea. As is the case with virtually all drugs, though, real world results are never as rosy as the drug trials indicate. Among the members of this board who have tried to use this treatment, the success rates seem to be significantly lower, usually due to discontinuation of the use of the med, because of side effects. For those who can tolerate the treatment, though, and provided that they avoid all sources of gluten and dairy products in their diet, this treatment seems to be about as effective as most prescription medications prescribed for treating MC, (with the possible exception of Entocort), and it typically provides remission of symptoms in about the same time frame, approximately 2 to 6 weeks. Of course, to maintain remission, it's almost always necessary to continue to follow a diet that avoids any and all food-sensitivities.Lesley wrote:Tell me more about pepto as a treatment, please.
Tex
P. S. By the way, prescriptions are worthless across borders, so you don't need a prescription to order from Alldaychemist.
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.
Pepto was definitely helpful for me, and I was fortunate in being able to tolerate it. It is worth a try, IMO, as long as you're mindful about side effects (not alarmed, just aware). I went GF/DF right away, and added the Pepto within about a week of that diet change. I was fortunate to see some relief relatively quickly, and reduced my dose faster than I had expected (I have "commitment issues" with medications 
).
I was so miserable I could hardly leave the house, so diet change and Pepto were easy and accessible changes I could make. (My husband went out and foraged for Pepto - and if you don't live with someone who's running errands for you while you're really miserable, you should call in a favor from a friend or neighbor... if you don't need Pepto, maybe some homemade chicken soup?) I would certainly have considered Entocort, if I had been unable to tolerate the Pepto and if my symptoms had remained relentless.
If you are planning to do the Enterolab tests soon, you can go ahead and drop dairy and gluten, to see whether they make you feel better. Gluten antibodies remain detectable for a long time, while antibodies to dairy protein dwindle more rapidly - so if you prefer to make one change at a time, dropping gluten should be your first experiment. (Forgive me, if you've already made these diet changes and I have lost track.)
Hope you feel better, soon.
Sara
).I was so miserable I could hardly leave the house, so diet change and Pepto were easy and accessible changes I could make. (My husband went out and foraged for Pepto - and if you don't live with someone who's running errands for you while you're really miserable, you should call in a favor from a friend or neighbor... if you don't need Pepto, maybe some homemade chicken soup?) I would certainly have considered Entocort, if I had been unable to tolerate the Pepto and if my symptoms had remained relentless.
If you are planning to do the Enterolab tests soon, you can go ahead and drop dairy and gluten, to see whether they make you feel better. Gluten antibodies remain detectable for a long time, while antibodies to dairy protein dwindle more rapidly - so if you prefer to make one change at a time, dropping gluten should be your first experiment. (Forgive me, if you've already made these diet changes and I have lost track.)
Hope you feel better, soon.
Sara
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
I'm with Sara. Don't wait for the Enterolab results--go ahead and change your diet. You will be just that much further on the road to feeling better when you do get them. And if the Enterolab tests show that you are not intolerant of a certain protein, enjoy re-adding those foods to your diet. Although I would wait a while--when one is reacting to something, it seems sometimes that everything causes a reaction. 
Also--let my experience serve as a cautionary tale. I got the whole range of Enterolab tests, and the only test that showed anything was the fecal fat absorption test which was almost off the scales, indicating severe damage in my small intestine. However, by experience I know that I am intolerant of gluten and soy, and have just discovered that I am also intolerant of casein, and likely of eggs. I am working on testing that now.
I have a basic reluctance (denial) to acknowledge when a new intolerance is rearing its head. As you probably know, our bodies only deal with one intolerance at a time, so when the antibodies from one intolerance fade, the body recognizes the next worse one and begins reacting to it. It takes me a little while to be willing to admit that I have another food group that I have to cut from my diet. So I can totally identify with you about waiting for the Enterolab test results to see what you are intolerant of, but I urge you to go ahead and cut them all so you start feeling better, and then perhaps have the relief of adding some back.
I have figured out that my GERD is a function of MC. I know that's not the way it is for everybody, but for me, this current flare also included a heartburn component. I used to have heartburn anytime of the day or night, but when everything is going good I don't have it. That is a recent development as I crossed the one-year mark into working for remission. In this current flare (probably caused by eggs, but we'll see when I challenge them) I know I am starting to get better because the heartburn is going away even though the gut symptoms have not alleviated.
Just my 2 cents... Hang in there, Lesley. It WILL get better!!
Also--let my experience serve as a cautionary tale. I got the whole range of Enterolab tests, and the only test that showed anything was the fecal fat absorption test which was almost off the scales, indicating severe damage in my small intestine. However, by experience I know that I am intolerant of gluten and soy, and have just discovered that I am also intolerant of casein, and likely of eggs. I am working on testing that now.
I have a basic reluctance (denial) to acknowledge when a new intolerance is rearing its head. As you probably know, our bodies only deal with one intolerance at a time, so when the antibodies from one intolerance fade, the body recognizes the next worse one and begins reacting to it. It takes me a little while to be willing to admit that I have another food group that I have to cut from my diet. So I can totally identify with you about waiting for the Enterolab test results to see what you are intolerant of, but I urge you to go ahead and cut them all so you start feeling better, and then perhaps have the relief of adding some back.
I have figured out that my GERD is a function of MC. I know that's not the way it is for everybody, but for me, this current flare also included a heartburn component. I used to have heartburn anytime of the day or night, but when everything is going good I don't have it. That is a recent development as I crossed the one-year mark into working for remission. In this current flare (probably caused by eggs, but we'll see when I challenge them) I know I am starting to get better because the heartburn is going away even though the gut symptoms have not alleviated.
Just my 2 cents... Hang in there, Lesley. It WILL get better!!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011