Hi Guys,
I am 31 years old and was diagnosed with collagenous colitis in March. I am so overwhelmed by the diagnosis, that I don't even know what to do. I immediately went gluten free and started acupuncture. Which yielded some results. It is way better than before, but not greatly. I am terrified of taking drugs. I have not had children yet, which my husband and I planned on doing soon. But now I am afraid I will pass this disease on to them.
My aunt and father both passed away early on from cancer and a heart attack. I definitely don't want to be on pills for the rest of my life. But I am afraid my holistic approach is not giving me the results that I need to function normally. I have read the forums, some of them help and some of them scare me to death. I guess my disease is milder than some, but it just sucks in general.
My doctor prescribed me Asacol, but I haven't taken one pill yet. He said that it would relieve my symptoms, but not fix anything. How do you fix this? I don't want to take 6 pills a day for the rest of my life.
Help! I am in tears writing this.
Thanks
I am new, young and terrified.
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Rizabelle, we are so glad you found us.If you can afford it, the EnteroLabs testing would be the way to go to find if you have any other intolerances. If you can't go that route, then an elimination diet would work.
You do not have to take drugs but your results will probably be slower. I haven't taken drugs because Tex, Dr. Polly and other Potty People had success without them.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Yes, it is pricey. Most likely not covered by insurance. Unfortunately, most doctors do not think much of the tests nor Dr. Fine.
I put my trust in Tex, Dr. Polly and the Potty People instead of my GI. It certainly paid off for me.
Check it out at www.enterolab.com
Most of us are intolerant of casein and about half of us can't have soy.
I put my trust in Tex, Dr. Polly and the Potty People instead of my GI. It certainly paid off for me.
Check it out at www.enterolab.com
Most of us are intolerant of casein and about half of us can't have soy.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Rizabelle,
Welcome to our internet family. The disease is not life-threatening, but it is life-altering. There is no cure, but the symptoms can definitely be controlled. The medications that are prescribed by doctors to treat the disease will often suppress the symptoms, by suppressing the inflammation that causes the disease, but the drugs cannot prevent the inflammation from continuing to form. The only way to prevent the inflammation from forming, is to eliminate the items in the diet, that trigger the inflammation. For many people, certain drugs trigger the disease, but in your case, (as is true for most of us here), certain food items are probably causing the autoimmune reaction that is generating your symptoms.
You're off to a good start with the GF diet. In addition to that, most of us are sensitive to casein, (the primary protein in all dairy products), and at least half of us are sensitive to soy, and all it's derivatives. Many of us find that by eliminating all gluten, casein, and soy from our diet, and by minimizing fiber and sugar, (and all artificial sweeteners), we can control all our symptoms, by diet alone. If that doesn't do the trick, you might have to search for other sensitivities, such as eggs, yeast, etc. It takes much longer to reach remission without the help of a medication, but it can certainly be done, as Joan mentioned.
As Joan pointed out, the Enterolab tests can help to eliminate any question about whether or not we are sensitive to certain foods, but those sensitivities can also be determined by trial and error, or by the elimination diet. The disease is not contagious, but there are certain genes that predispose to CC, and each of your children will inherit half of their genes from you, (and the other half they will get from their father, of course). If you're curious about your genes, Enterolab also offers a gene test, (based on a sample of DNA material that you obtain by rubbing a cotton swab inside your cheeks), which will show any genes that predispose to either celiac disease or microscopic colitis.
Once you figure out all of your food sensitivities, and cut them out of your diet, so that your gut can heal, your symptoms will slowly go away, and you should be able to return to a more normal life, and raise the family that you and your husband are planning. CC is not the end of the trail, but it is a big bump in the road, that takes some dedication, patience, and careful attention to detail, in order to overcome. The good news is that you can do it without taking any drugs, if you are motivated, and you sound as though you are. It takes longer without any medications, but it is certainly doable.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. The disease is not life-threatening, but it is life-altering. There is no cure, but the symptoms can definitely be controlled. The medications that are prescribed by doctors to treat the disease will often suppress the symptoms, by suppressing the inflammation that causes the disease, but the drugs cannot prevent the inflammation from continuing to form. The only way to prevent the inflammation from forming, is to eliminate the items in the diet, that trigger the inflammation. For many people, certain drugs trigger the disease, but in your case, (as is true for most of us here), certain food items are probably causing the autoimmune reaction that is generating your symptoms.
You're off to a good start with the GF diet. In addition to that, most of us are sensitive to casein, (the primary protein in all dairy products), and at least half of us are sensitive to soy, and all it's derivatives. Many of us find that by eliminating all gluten, casein, and soy from our diet, and by minimizing fiber and sugar, (and all artificial sweeteners), we can control all our symptoms, by diet alone. If that doesn't do the trick, you might have to search for other sensitivities, such as eggs, yeast, etc. It takes much longer to reach remission without the help of a medication, but it can certainly be done, as Joan mentioned.
As Joan pointed out, the Enterolab tests can help to eliminate any question about whether or not we are sensitive to certain foods, but those sensitivities can also be determined by trial and error, or by the elimination diet. The disease is not contagious, but there are certain genes that predispose to CC, and each of your children will inherit half of their genes from you, (and the other half they will get from their father, of course). If you're curious about your genes, Enterolab also offers a gene test, (based on a sample of DNA material that you obtain by rubbing a cotton swab inside your cheeks), which will show any genes that predispose to either celiac disease or microscopic colitis.
Once you figure out all of your food sensitivities, and cut them out of your diet, so that your gut can heal, your symptoms will slowly go away, and you should be able to return to a more normal life, and raise the family that you and your husband are planning. CC is not the end of the trail, but it is a big bump in the road, that takes some dedication, patience, and careful attention to detail, in order to overcome. The good news is that you can do it without taking any drugs, if you are motivated, and you sound as though you are. It takes longer without any medications, but it is certainly doable.
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.
Rizabelle,
I hope you're already feeling encouraged (and I hope your symptoms are cutting you some slack, too).
I am very anti-Rx myself, and am working toward remission via diet alone. The first couple of weeks I was sick, I did use Pepto Bismol, which I believe was truly helpful (hate hate hate it, and why is it PINK?). The 'therapeutic' dose is high and I cut back fast (maybe too fast... I'm with you, I do not want to take medication if I can avoid it).
I hope you're already feeling encouraged (and I hope your symptoms are cutting you some slack, too).
I am very anti-Rx myself, and am working toward remission via diet alone. The first couple of weeks I was sick, I did use Pepto Bismol, which I believe was truly helpful (hate hate hate it, and why is it PINK?). The 'therapeutic' dose is high and I cut back fast (maybe too fast... I'm with you, I do not want to take medication if I can avoid it).
Rizabelle,
I hope you're already feeling encouraged (and I hope your symptoms are cutting you some slack, too).
I am very anti-Rx myself by reflex, and am working toward remission via diet alone. The first couple of weeks I was sick, I did use Pepto Bismol, which I believe was truly helpful (hate hate hate it, and why is it PINK?). The 'therapeutic' dose is high and I cut back fast (maybe too fast... I'm with you, I do not want to take medication if I can avoid it).
Now that I'm feeling better (much better, there is hope!), I must say that if I am ever unable to reign in my MC symptoms by diet alone, I will be more open to trying some medication or other as a helpful tool. I think there is nothing more important than stopping the debilitating, exhausting, disruptive diarrhea - kind of like a 4-alarm fire. I am very grateful that it hasn't come to that, and hopeful that it won't.
I agree with Tex - you do sound motivated. I was very motivated from the beginning, too - I love food a lot, but there is nothing I want to eat so badly that I'm willing to feel sick from it (so I went hard-core for no-risk eating - made a lot of homemade chicken soup!). I bet you'll be able to make real progress with diet - and if you need further help, there's no better place to learn about your Rx (or OTC) options than here on this board.
I agree with Tex - you sound motivated, and that's a great boost. It can be hard socially, especially at first, and people outside this forum don't really understand that 'a little bit' is a huge problem. But you will find your own path through whatever work, family, social and other situations you need to navigate. And you'll get a lot of tactical tips here to make that easier.
Wishing you well,
Sara
I hope you're already feeling encouraged (and I hope your symptoms are cutting you some slack, too).
I am very anti-Rx myself by reflex, and am working toward remission via diet alone. The first couple of weeks I was sick, I did use Pepto Bismol, which I believe was truly helpful (hate hate hate it, and why is it PINK?). The 'therapeutic' dose is high and I cut back fast (maybe too fast... I'm with you, I do not want to take medication if I can avoid it).
Now that I'm feeling better (much better, there is hope!), I must say that if I am ever unable to reign in my MC symptoms by diet alone, I will be more open to trying some medication or other as a helpful tool. I think there is nothing more important than stopping the debilitating, exhausting, disruptive diarrhea - kind of like a 4-alarm fire. I am very grateful that it hasn't come to that, and hopeful that it won't.
I agree with Tex - you do sound motivated. I was very motivated from the beginning, too - I love food a lot, but there is nothing I want to eat so badly that I'm willing to feel sick from it (so I went hard-core for no-risk eating - made a lot of homemade chicken soup!). I bet you'll be able to make real progress with diet - and if you need further help, there's no better place to learn about your Rx (or OTC) options than here on this board.
I agree with Tex - you sound motivated, and that's a great boost. It can be hard socially, especially at first, and people outside this forum don't really understand that 'a little bit' is a huge problem. But you will find your own path through whatever work, family, social and other situations you need to navigate. And you'll get a lot of tactical tips here to make that easier.
Wishing you well,
Sara
Hi Rizabelle,
I have never taken anything for my LC other than Immodium. And that only periodically. While I always keep some in my handbag, I rarely resort to it. So long as I don't eat problem foods, I don't have problems. Only drugs I take are vitamins, herbs, alcohol, and my immunologist wants me to take some stuff for hayfever at the first hint of spring.
Finding out what the problems are can be a challenge. I was one who had problems with a medication (hormones). At one stage I was struggling with eating a really restricted diet (rice with honey, eggs, Chamomile tea and the odd banana), but I still had problems until I removed the meds which promptly showed up the culprit.
You'll sort out what the culprit(s) are for you, and you will get your life back in order. Before you try to become pregnant, you might want to consider your vitamin and mineral status. LC patients tend to be low in the B group vitamins, magnesium, and most especially vitamin D. Our guts aren't processing the food well to absorb the vitamins. So once you start getting the D under control you might want to start adding in some (gluten, dairy and soy free) vitamin/mineral supplements to get your body to optimum health.
Let us know how you are going. What are you eating, and what impact is it having on the D?
Lyn
I have never taken anything for my LC other than Immodium. And that only periodically. While I always keep some in my handbag, I rarely resort to it. So long as I don't eat problem foods, I don't have problems. Only drugs I take are vitamins, herbs, alcohol, and my immunologist wants me to take some stuff for hayfever at the first hint of spring.
Finding out what the problems are can be a challenge. I was one who had problems with a medication (hormones). At one stage I was struggling with eating a really restricted diet (rice with honey, eggs, Chamomile tea and the odd banana), but I still had problems until I removed the meds which promptly showed up the culprit.
You'll sort out what the culprit(s) are for you, and you will get your life back in order. Before you try to become pregnant, you might want to consider your vitamin and mineral status. LC patients tend to be low in the B group vitamins, magnesium, and most especially vitamin D. Our guts aren't processing the food well to absorb the vitamins. So once you start getting the D under control you might want to start adding in some (gluten, dairy and soy free) vitamin/mineral supplements to get your body to optimum health.
Let us know how you are going. What are you eating, and what impact is it having on the D?
Lyn
Dear Rizabelle,
I'm glad you found us. This is a great place for information and support.
I took Entocort for 3 months, and it felt so wonderful not to have diarrhea all the time. It gave me hope that normal life is possible. But I didn't want to stay on meds forever, and it is so expensive, that I went looking for alternative ways of dealing with MC. My doctor had told me that MC is incurable, and the medicine only suppresses the symptoms. (He also told me that diet is not a factor in MC.)
That's how I found this forum, and got so much good information and benefitted from everyone else's experience. I am eating gluten-, dairy-, and soy-free, and I also eat some unsweetened coconut every day. I would never have known how long it can take to get rid of the effects of gluten. I had tried going gf before, for a week or two, and when it didn't make a difference, I thought gluten was not the problem. It was only by learning that things can take way longer than I expected to improve that I realized that an experiment of a week is not enough.
The Enterolab testing was helpful. I did the testing for gluten, dairy, soy, egg, and yeast. My insurance company, after initially leading me to believe that the tests would be covered, declined to pay because I hadn't gotten a doctor's order for it. That makes sense, I guess, from their perspective. However, the one-time tests were still less than my one-month co-pay for Entocort at a pharmacy. (I ended up ordering the Entocort on line for a lower price, which insurance didn't pay, of course.)
Well, all that to say that diet is really the key to lasting success in living with MC, but having medicine to get you over the hump, and to help deal with flares is a wonderful thing.
Martha
I'm glad you found us. This is a great place for information and support.
I took Entocort for 3 months, and it felt so wonderful not to have diarrhea all the time. It gave me hope that normal life is possible. But I didn't want to stay on meds forever, and it is so expensive, that I went looking for alternative ways of dealing with MC. My doctor had told me that MC is incurable, and the medicine only suppresses the symptoms. (He also told me that diet is not a factor in MC.)
That's how I found this forum, and got so much good information and benefitted from everyone else's experience. I am eating gluten-, dairy-, and soy-free, and I also eat some unsweetened coconut every day. I would never have known how long it can take to get rid of the effects of gluten. I had tried going gf before, for a week or two, and when it didn't make a difference, I thought gluten was not the problem. It was only by learning that things can take way longer than I expected to improve that I realized that an experiment of a week is not enough.
The Enterolab testing was helpful. I did the testing for gluten, dairy, soy, egg, and yeast. My insurance company, after initially leading me to believe that the tests would be covered, declined to pay because I hadn't gotten a doctor's order for it. That makes sense, I guess, from their perspective. However, the one-time tests were still less than my one-month co-pay for Entocort at a pharmacy. (I ended up ordering the Entocort on line for a lower price, which insurance didn't pay, of course.)
Well, all that to say that diet is really the key to lasting success in living with MC, but having medicine to get you over the hump, and to help deal with flares is a wonderful thing.
Martha
Martha