Ok, as some of you know, I can't afford Entecort, so I've been going it myself since March. I've tried GF, DF, but am still, every single day having the big D and when I mean big, I mean big. The whole explosion, 10 to 15 times a day. It doesn't matter what I eat, it's still there. I have not had ONE single day with any relief. I"m ready to give up on the whole GF DF thing, because it is not working at all. I can eat nothing but rice, for days on end and NO relief. Chicken with rice, same thing. Tea and GF toast, same thing. I've tried making GHEE, that didn't work either, STILL the big D. Am READY for this to be over with.
I am so frustrated, and I have absolutely NO life at all. I can't go anywhere. I can't do anything. I sit all day because I feel absolultely miserable. Even Immodium doesn't help. I take five, six a day and STILL the big D....WHAT is going on with me? HELP!!!!
So frustrated, I just want to scream.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Joefnh
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- Location: Southern New Hampshire
Mulkey, I am fairly new to this as well, but I have been able to take the Entocort for a while. I have found though that early on the use of Imodium or Questran did help. Questran is a prescription powder that you mix with a drink of your choice. The powder is a bile binding resin that is normally used to help reduce cholesterol absorption but has been found to help the D quite a bit, especially when used with a GF/DF/SF diet. You should be able to ask you doctor for it and it is available as a generic significantly reducing the cost.
I'm sure others will jump in here with further information. I would encourage you to keep up with the GF/DF/SF diet and double check the ingredients to insure that the ingredients are safe.
I do know in my case that I cannot eat any raw vegetable or fruits anymore as they also contribute to the D.
Best of luck in working through this, keep in touch
--Joe
I'm sure others will jump in here with further information. I would encourage you to keep up with the GF/DF/SF diet and double check the ingredients to insure that the ingredients are safe.
I do know in my case that I cannot eat any raw vegetable or fruits anymore as they also contribute to the D.
Best of luck in working through this, keep in touch
--Joe
Joe
Thanks Joe. I'm being careful about what I'm eating, it just doesn't seem to do any good. I also can't afford to send off for the testing that everyone gets done, so I'm guessing and just figuring I'm sensitive to gluten, dairy, soy and probably some other stuff too. I'll ask the doc about that other stuff you have mentioned. I think my gastro has just pretty much given up on me. He pretty much told me "well, there's nothing else we can give you, so you'll just have to make it with Imodium"....seriously!!!
You really are having a bad time of it!
Don't give up, we'll keep trying to find something to help YOU.
If Entocort is out of the picture, have you talked to your doctor about alternatives, such as one of the 5 ASA meds like Asacol? Or, have you looked at importing some generic entocort from Canada?
You said you are having bad days even with just rice. Are you taking any meds at all that could be a problem? I found I had to ditch my HRT patches as they were causing problems - yup patches. Vitamins or meds with lactose could still be an issue for you. Any trace gluten in cosmetics, face creams, etc?
I remember when I was this bad, that Tex told me to eat eggs to make sure I got some protein in. It can be worth trying to rotate some protein based foods into your diet - lamb, pork, eggs etc each for a few days at a time. This will make life feel a lot better - give you some slow burning energy. Also keep up the water (despite the temptation not to) as dehydration is not going to help.
You mentioned Immodium. I find regular Immodium or any of the generics don't work - probably because they have lactose. Immodium Advanced does work for me.
Joe has already suggested the Questran - maybe that is something to talk to the doctor about.
Being this crook is bad for your head - you may need to take some antidepressive medication to help you over this bad time. St Johns Wort is enough for me, but lots of others here have tried prescription drugs for this.
Hang in there and talk to us regularly about how it's going.
Lyn
Don't give up, we'll keep trying to find something to help YOU.
If Entocort is out of the picture, have you talked to your doctor about alternatives, such as one of the 5 ASA meds like Asacol? Or, have you looked at importing some generic entocort from Canada?
You said you are having bad days even with just rice. Are you taking any meds at all that could be a problem? I found I had to ditch my HRT patches as they were causing problems - yup patches. Vitamins or meds with lactose could still be an issue for you. Any trace gluten in cosmetics, face creams, etc?
I remember when I was this bad, that Tex told me to eat eggs to make sure I got some protein in. It can be worth trying to rotate some protein based foods into your diet - lamb, pork, eggs etc each for a few days at a time. This will make life feel a lot better - give you some slow burning energy. Also keep up the water (despite the temptation not to) as dehydration is not going to help.
You mentioned Immodium. I find regular Immodium or any of the generics don't work - probably because they have lactose. Immodium Advanced does work for me.
Joe has already suggested the Questran - maybe that is something to talk to the doctor about.
Being this crook is bad for your head - you may need to take some antidepressive medication to help you over this bad time. St Johns Wort is enough for me, but lots of others here have tried prescription drugs for this.
Hang in there and talk to us regularly about how it's going.
Lyn
I know how frustrating this can be.. I spent about 3 years trapped in my house and going through diapers by the truck load even though I was only a few feet from the bathroom.
When I was first diagnosed... entocort was off the market... too many doctors had prescribed it improperly.. and some people died. It is for people with D only!
When entocort came back on the market I was afraid to take it. I did try asacol that has worked for many but it made me dizzy and sick.
The thing that worked best when I was first diagnosed was lomotil (and the generic). I could take it after several trips to the bathroom in the morning and sometimes needed a second pill. I could at least get out of the house briefly after that. I could run errands, etc. However, the downside was I was tired all of the time.. the up side was I needed fewer diapers and my hubby was unemployed at the time.
I have read that two companies are going to come out with a generic for entocort.. it actually exists in other countries but hasn't been approved here yet..
I don't know how to order drugs from from Canada but others here have done it. I am grateful that I still have a retiree prescription plan so can continue to take entocort.
Stay with the diet... it takes quite a while to work. Chicken and rice can get boring..adding eggs added some variety.. the lowering of the diaper bill made the boring diet worth while:)
Hang in there... this is a frustrating disease with no real "cure" and there are way too few doctors who know enough to be helpful!
There is plenty of hope and help here and eventually we each put together a plan that will work for us since not everyone is intolerant to the same things.
grannyh
When I was first diagnosed... entocort was off the market... too many doctors had prescribed it improperly.. and some people died. It is for people with D only!
When entocort came back on the market I was afraid to take it. I did try asacol that has worked for many but it made me dizzy and sick.
The thing that worked best when I was first diagnosed was lomotil (and the generic). I could take it after several trips to the bathroom in the morning and sometimes needed a second pill. I could at least get out of the house briefly after that. I could run errands, etc. However, the downside was I was tired all of the time.. the up side was I needed fewer diapers and my hubby was unemployed at the time.
I have read that two companies are going to come out with a generic for entocort.. it actually exists in other countries but hasn't been approved here yet..
I don't know how to order drugs from from Canada but others here have done it. I am grateful that I still have a retiree prescription plan so can continue to take entocort.
Stay with the diet... it takes quite a while to work. Chicken and rice can get boring..adding eggs added some variety.. the lowering of the diaper bill made the boring diet worth while:)
Hang in there... this is a frustrating disease with no real "cure" and there are way too few doctors who know enough to be helpful!
There is plenty of hope and help here and eventually we each put together a plan that will work for us since not everyone is intolerant to the same things.
grannyh
Hi M!
So sorry to hear what a difficult time you are having. I wanted to let you know that diet takes time - it took me 9 mo. to see a formed BM after I started dieting. Someone else took 15 mo. I believe. I know it is frustrating and life-altering. But don't give up. Have you seen even tiny changes, like a little less urgency or less gas? Or less "brain fog"?
Contamination is a major problem when first starting diet. The advice to check any pills/supplements is important.
I think Granny above is referring to Lotronex, not Entocort, that was taken off the market. Entocort is a lot safer. It bugs me no end that you can't get medicine that you need. You might call your local health dept. to see if they have any programs to help with med. cost. Sometimes they do, or they know where to call to get help. Ask to speak with the nursing dept.
Hang in there.....better days are ahead.
Love and
Polly
So sorry to hear what a difficult time you are having. I wanted to let you know that diet takes time - it took me 9 mo. to see a formed BM after I started dieting. Someone else took 15 mo. I believe. I know it is frustrating and life-altering. But don't give up. Have you seen even tiny changes, like a little less urgency or less gas? Or less "brain fog"?
Contamination is a major problem when first starting diet. The advice to check any pills/supplements is important.
I think Granny above is referring to Lotronex, not Entocort, that was taken off the market. Entocort is a lot safer. It bugs me no end that you can't get medicine that you need. You might call your local health dept. to see if they have any programs to help with med. cost. Sometimes they do, or they know where to call to get help. Ask to speak with the nursing dept.
Hang in there.....better days are ahead.
Love and
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
I just spent a great amount of time typing a reply using my IPod and lost it when I completed spell check. Will start over.
I know how you feel because I just went through the same thing. I started out taking the very very inexpensive generic drug called Balsalazide. It worked for me for the first.three months and then I don't know what triggered it but the diarrhea kept getting worser and worser. I began taking up to eight a day of the generic pepto bismol and imodium and nothing worked.
I eventually had to switch to Entocort and it is working for me. This is a lot more expensive with my Medicare insurance but still affordable for me. I suppose you don't have insurance.
I think I would ask the pharmacist if there are any programs you qualify for.
The Naturopaths suggest 4,000 mg of L-glutamine
I know how you feel because I just went through the same thing. I started out taking the very very inexpensive generic drug called Balsalazide. It worked for me for the first.three months and then I don't know what triggered it but the diarrhea kept getting worser and worser. I began taking up to eight a day of the generic pepto bismol and imodium and nothing worked.
I eventually had to switch to Entocort and it is working for me. This is a lot more expensive with my Medicare insurance but still affordable for me. I suppose you don't have insurance.
I think I would ask the pharmacist if there are any programs you qualify for.
The Naturopaths suggest 4,000 mg of L-glutamine
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
I wasn't finished but didn't want to loose it again. I'm working on a little IPod and it began acting up again. My computer in in the shop for a tune up.
I wanted to say the Naturopaths here suggest 4,000 mg a day of L-glutamine (an animo acid) and probiotics.
I know your situation is so discouraging but just hang in there.
I wanted to say the Naturopaths here suggest 4,000 mg a day of L-glutamine (an animo acid) and probiotics.
I know your situation is so discouraging but just hang in there.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Joan,
Since Charlotte is somewhat handicapped by having to use an iPod for posting, I'll help her out here. I know nothing about this source, but this appears to be a reasonable description:
Tex
Since Charlotte is somewhat handicapped by having to use an iPod for posting, I'll help her out here. I know nothing about this source, but this appears to be a reasonable description:
http://www.fitwise.com/l-glutamine_information.aspGLUTAMINE TREATMENT
Glutamine is the most abundant amino acid found in the body and is primarily located in the lining of the small intestine.(24) Glutamine contributes a significant role in muscle metabolism during sickness, stress and exercise. The gastrointestinal tract cannot function without glutamine. Glutamine is the primary treatment for ulcers, and disorders of the small and large intestine such as Irritable Bowel Syndrome (IBS) which is characterized by constipation, diarrhea or both.
Glutamine feeds the tissue of the small intestine enabling the villi to grow and improve absorption of nutrients across the cell membrane more efficiently. Glutamine works inside the liver to produce the super powerful amino acid Glutathione, which is one of the main free radical fighters within the body.(24) While the addition of anti-oxidants (Vitamins E, C and Beta-Carotene) are important in the removal of free radicals from the body, without Glutathione the fight would be lost and the body would suffer in many ways.
IMPROVING YOUR BODY'S DEFENSES
Glutamine improves the immune system's ability to manufacture white blood cells that in turn fight infection. Supplementing your body with nutrients such as Glutamine assists the body in resisting outside assaults from pathogenic micro-organisms (unfriendly bacteria).
Glutamine is the major component in making essential neuro-transmitters.(21) Research has demonstrated improvements in memory retention, cognitive ability, and problem solving when Glutamine was supplemented in the diet. Glutamine enables the body to maintain constant blood sugar levels.(22) This state of steady blood sugar balance is necessary for optimal brain function since the brain utilizes glucose (blood sugar) as a primary source of fuel in addition to oxygen.
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.
Mulkey,
I agree with everyone's suggestions in their responses. If cost is a consideration, then none of the 5-ASA medications, (those, based on 5-aminosalicylic acid, such as Asacol, colazal, Pentasa, etc.), are likely to be practical either, because they are almost as expensive as Entocort, in most cases.
However, unlike Entocort EC, there are patient assistance programs available for most of these drugs. For example, qualifying information and an application form can be found for Lialda, (which is a drug similar to Asacol, but much newer), at this link:
http://www.rxassist.org/Search/Prog_Det ... rch_type=2
If approved, they will send you a 90 day supply of the drug, and you can reapply each time, in order to continue the program, (but you must submit a new application, each time - it cannot be extended automatically, without an application). Unlike Asacol, Lialda does not contain lactose, which can be a problem for many of us, and Lialda is the most potent of the 5-ASA group of medications, I believe. When I say most potent, I mean that it contains the most concentrated dose of the active ingredient, mesalamine.
There are also patient assistance programs for other drugs in this class. If you are interested, and have problems tracking them down, please don't hesitate to ask for help. Some of us are pretty good at finding such programs.
As Polly and others mentioned, it takes longer than a few months for the diet to work, when it is used without any inflammation-suppressing medications. It took a year and a half for me to achieve remission, by diet alone, but I probably could have shortened that time, if I hadn't continued to "test" myself with dairy products, and other things that I suspected that I was sensitive to. Once I stopped doing that, remission arrived quickly.
The diet does indeed work, as many of us here have demonstrated, but it usually takes 6 months to a year to get the job done, because while it removes the source of inflammation, it still takes the gut a long time to heal. That's why medications can speed up relief, because they help to suppress the inflammation faster, (that way you don't have to wait for the gut to heal, in order to get relief from the symptoms).
Patience and perseverence pays off - you will achieve remission, and you will get your life back, if you continue to carefully control your diet. If you want to apply for one of the patient assistance programs, and you need help, please don't hesitate to ask. Note that you can only apply for one patient assistance program at a time. IOW, every one that I have analyzed, requires that no other assistance program can be utilized at the same time, and the patient cannot have insurance, of course.
It's possible that you might be only a week or two, or even a day or two away from remission - it's impossible to tell, in advance. Some patients find that their symptoms slowly improve, while others wake up one day and suddenly realize that their symptoms are gone.
Tex
I agree with everyone's suggestions in their responses. If cost is a consideration, then none of the 5-ASA medications, (those, based on 5-aminosalicylic acid, such as Asacol, colazal, Pentasa, etc.), are likely to be practical either, because they are almost as expensive as Entocort, in most cases.
However, unlike Entocort EC, there are patient assistance programs available for most of these drugs. For example, qualifying information and an application form can be found for Lialda, (which is a drug similar to Asacol, but much newer), at this link:
http://www.rxassist.org/Search/Prog_Det ... rch_type=2
If approved, they will send you a 90 day supply of the drug, and you can reapply each time, in order to continue the program, (but you must submit a new application, each time - it cannot be extended automatically, without an application). Unlike Asacol, Lialda does not contain lactose, which can be a problem for many of us, and Lialda is the most potent of the 5-ASA group of medications, I believe. When I say most potent, I mean that it contains the most concentrated dose of the active ingredient, mesalamine.
There are also patient assistance programs for other drugs in this class. If you are interested, and have problems tracking them down, please don't hesitate to ask for help. Some of us are pretty good at finding such programs.
As Polly and others mentioned, it takes longer than a few months for the diet to work, when it is used without any inflammation-suppressing medications. It took a year and a half for me to achieve remission, by diet alone, but I probably could have shortened that time, if I hadn't continued to "test" myself with dairy products, and other things that I suspected that I was sensitive to. Once I stopped doing that, remission arrived quickly.
The diet does indeed work, as many of us here have demonstrated, but it usually takes 6 months to a year to get the job done, because while it removes the source of inflammation, it still takes the gut a long time to heal. That's why medications can speed up relief, because they help to suppress the inflammation faster, (that way you don't have to wait for the gut to heal, in order to get relief from the symptoms).
Patience and perseverence pays off - you will achieve remission, and you will get your life back, if you continue to carefully control your diet. If you want to apply for one of the patient assistance programs, and you need help, please don't hesitate to ask. Note that you can only apply for one patient assistance program at a time. IOW, every one that I have analyzed, requires that no other assistance program can be utilized at the same time, and the patient cannot have insurance, of course.
It's possible that you might be only a week or two, or even a day or two away from remission - it's impossible to tell, in advance. Some patients find that their symptoms slowly improve, while others wake up one day and suddenly realize that their symptoms are gone.
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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wonderwoman
- Rockhopper Penguin
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- Location: Sun City, AZ
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Gabes-Apg
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- Location: Hunter Valley NSW Australia
Mulkay
although the advice above doesnt mean a quick cure or that you will feel better today but as tex said with pateince you will get better and you will get your life back
i didnt do the entorlab stool testing either, i took my diet back to rice and chicken, and then slowly added ingredients
that was 7 months ago and in that time i have confirmed that i can not tolerate Yeast, Soy, Dairy,
my basic diet consists of 7 vegetables, well cooked meat/chicken/fish, rice, rice cakes/corn cakes, clear juice black coffee
every couple of weeks if i feel well then i try something new, very small serving
i am only taking small doses of questran as required. if i stick to this diet then i do 2 reasonable well formed BM each day.
If i get a bit stressed at work then the BM may get softer and it will increase to 3-4 times
i wont lie, it wasnt easy, there are no short cuts and my life has changed alot to suit this MC management style.
i have had to do alot of work mentally and emotionally to 'let go' of foods that i had considered my favourites, cooking styles that i had enjoyed, and the concept of variety and flavours
i do really value what i have achieved with the diet in the 7 months, and when i read posts like yours i do still remember what it was like before i diagnosed to be a prisoner of the bathroom
big hugs we are here to help -
you are tired and it is hard to find the energy to deal with this crap (pun intended)
it is worth the energy.....
although the advice above doesnt mean a quick cure or that you will feel better today but as tex said with pateince you will get better and you will get your life back
i didnt do the entorlab stool testing either, i took my diet back to rice and chicken, and then slowly added ingredients
that was 7 months ago and in that time i have confirmed that i can not tolerate Yeast, Soy, Dairy,
my basic diet consists of 7 vegetables, well cooked meat/chicken/fish, rice, rice cakes/corn cakes, clear juice black coffee
every couple of weeks if i feel well then i try something new, very small serving
i am only taking small doses of questran as required. if i stick to this diet then i do 2 reasonable well formed BM each day.
If i get a bit stressed at work then the BM may get softer and it will increase to 3-4 times
i wont lie, it wasnt easy, there are no short cuts and my life has changed alot to suit this MC management style.
i have had to do alot of work mentally and emotionally to 'let go' of foods that i had considered my favourites, cooking styles that i had enjoyed, and the concept of variety and flavours
i do really value what i have achieved with the diet in the 7 months, and when i read posts like yours i do still remember what it was like before i diagnosed to be a prisoner of the bathroom
big hugs we are here to help -
you are tired and it is hard to find the energy to deal with this crap (pun intended)
it is worth the energy.....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama