Hello, my name is Marla and wow, am I glad to have found this site. We've all been through the ringer, haven't we? Well my story is probably the same as most when it comes to the agonizing and never-ending quest for answers, diagnosis, and now for me, treatment. I've been to so many docs, each one couldn't wait to pass me along to someone else. I swear, "get in, get out" must be their philosophy. Each one told me that I had IBS or I was suffering from anxiety or it was just all in my head.
I was a perfectly healthy 24 yr old woman w/ absolutely NO gastrointestional problems. After the birth of my son (13 months ago) I had a postpartum hemorrhage and we are suspecting that I was given high doses of antibiotics in order to avoid infection. Anyway, I was fine for 6 months while I was breastfeeding. As soon as my milk dried up, I got this chronic burning in my chest followed by unusual weight loss. Doc said it was GERD so I tried every acid reducer, proton inhibitor known to man and NOTHING worked. Then came the onset of diarrhea. Had an upper GI endoscopy, they said it wasn't GERD but "non-ulcerative dyspepsia". And since then I've had 7 months of HELL! The worst stomach cramps known to MAN (definitely up there w/ child birth) and horrible FATIGUE. I've never been so tired before in my life.
10/21/08 had my first colonoscopy and through the scope my colon looked normal. However, the pathology report from the biopsies he took reads:
"Benign colonic mucosa with mild increase in intraepithelial lymphocytes. There is no significant increase in subepithelial collagen. There is a slightly moderate increase in the luminal surface intraepithelial spaces. This pattern of inflammation may represent a borderline microscopic colitis."
Any advice about what the "borderline" could mean? Do I have MC or not? My GI doc doesn't want anything to do w/ me anymore. He told me to take pepto 4x daily and to go back to my primary doc. Meanwhile, the stomach cramps and fatigue are almost too much to handle. I take Immodium and Librax for the spasms.
Sorry I just shared my life story :)
I'm just SERIOUSLY losing faith in the traditional medical field and am considering trying alternative medicine. Maybe a naturopath doc would be more compassionate?
Any advice would be much appreciated! Thank you!
Newbie here. diagnosed w/ "borderline" Microscopic
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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marmiran23
- Posts: 7
- Joined: Wed Nov 12, 2008 11:38 am
Hi Marla,
Welcome to our home away from home. You'll get so much support and information here. I was diagnosed MC about 15 months ago. This forum has given me more information than the medical field. My doctor tried me on a number of medications but I don't do well on medication. Through encouragement of this board, I decided to address my condition with diet alone. This was huge for me as I've always loved food. Getting glutten out of my system has made a huge difference. I feel better than I did on any of the medications. I've also taken out dairy and soy. It's hard at first but you get used to it. Feeling so much better is worth the sacrifice of doughnuts and pizza.
I don't know about your borderline MC question. Tex will probably follow up tomorrow. There is a huge wealth of knowledge here. I'm still learning.
Hang in there, keep reading posts here and you'll get lots of good advice.
Welcome!
Welcome to our home away from home. You'll get so much support and information here. I was diagnosed MC about 15 months ago. This forum has given me more information than the medical field. My doctor tried me on a number of medications but I don't do well on medication. Through encouragement of this board, I decided to address my condition with diet alone. This was huge for me as I've always loved food. Getting glutten out of my system has made a huge difference. I feel better than I did on any of the medications. I've also taken out dairy and soy. It's hard at first but you get used to it. Feeling so much better is worth the sacrifice of doughnuts and pizza.
I don't know about your borderline MC question. Tex will probably follow up tomorrow. There is a huge wealth of knowledge here. I'm still learning.
Hang in there, keep reading posts here and you'll get lots of good advice.
Welcome!
Becky
Hi Marla,
Welcome to our online family. You have definitely been through the "medical wringer", and I'm sorry to hear that you weren't able to find any relief there, (though I guess I'm not really surprised). Your description of their "routine" of "running" you through their "medical production line", and taking your money, without resolving your problems, sounds pretty familiar. Who else would we pay that kind of money to, and receive no benefit whatsoever, except a GI doc.
Did they take any biopsies from your duodenum, during the "upper", to rule out celiac disease? It sounds as though you may have gastritis, as a side effect of the MC.
The "no significant increase in subepithelial collagen" part, means that you do not have collagenous colitis. Yes, you definitely have MC, (LC, to be specific).
If your GI doc doesn't want anything to do with you anymore, then ditch him - he's a loser. You don't need him, because he obviously doesn't know how to treat MC, anyway. Now that you have a diagnosis, you can do a better job of treating it yourself, than he can. You can either modify your diet to achieve remission, the way that many of us here have, (as Becky has already mentioned), or with that diagnosis in hand, you can ask your PCP to prescribe a med to treat MC. If he/she doesn't know what to prescribe for MC, ask for Entocort EC - it's the most effective med that's available to treat MC, and one of the safest.
For some reason or other, most GI docs are totally stymied when they encounter MC - some of them can diagnose it, but they can't for the life of them, figure out how to effectively treat it. Fortunately, by comparing notes with the experts on MC, (namely, those who have it), we have compiled probably the largest database in the world, on MC, and how to treat it. The bottom line is that no one understands MC, unless they have it, and that puts the medical profession at a big disadvantage, because very few of them have it. We all have it here, (or we have a close relative under our care, who has it), so we truly understand how you feel, something that very, very few GI docs can honestly say.
Please feel free to ask anything, and we'll do our best to answer.
Again, welcome to the group.
Tex
Welcome to our online family. You have definitely been through the "medical wringer", and I'm sorry to hear that you weren't able to find any relief there, (though I guess I'm not really surprised). Your description of their "routine" of "running" you through their "medical production line", and taking your money, without resolving your problems, sounds pretty familiar. Who else would we pay that kind of money to, and receive no benefit whatsoever, except a GI doc.
Did they take any biopsies from your duodenum, during the "upper", to rule out celiac disease? It sounds as though you may have gastritis, as a side effect of the MC.
The distinguishing marker for a diagnosis of LC, is increased lymphocytic infiltration between the cells of the epithelia of the colon. A sample of "normal" colonic epithelia, typically exhibits less than 20 intraepithelial lymphocytes per 100 surface enterocytes, in the most concentrated area of a biopsy sample. (Enterocytes are simple columnar epithelial cells found in the small intestines and colon). If the count is higher than 20 lymphocytes per 100 cells, then MC is indicated. Apparently, your lymphocyte count was barely above 20 per hundred enterocytes, so he chose to call it "borderline". MC is sort of like pregnancy, though, in that either you have it or you don't. "Borderline" is really a meaningless phrase, when used in this context, because the symptoms of an MC patient with a "borderline" lymphocyte count, will probably be just as severe as any other MC patient.Benign colonic mucosa with mild increase in intraepithelial lymphocytes. There is no significant increase in subepithelial collagen. There is a slightly moderate increase in the luminal surface intraepithelial spaces. This pattern of inflammation may represent a borderline microscopic colitis.
The "no significant increase in subepithelial collagen" part, means that you do not have collagenous colitis. Yes, you definitely have MC, (LC, to be specific).
If your GI doc doesn't want anything to do with you anymore, then ditch him - he's a loser. You don't need him, because he obviously doesn't know how to treat MC, anyway. Now that you have a diagnosis, you can do a better job of treating it yourself, than he can. You can either modify your diet to achieve remission, the way that many of us here have, (as Becky has already mentioned), or with that diagnosis in hand, you can ask your PCP to prescribe a med to treat MC. If he/she doesn't know what to prescribe for MC, ask for Entocort EC - it's the most effective med that's available to treat MC, and one of the safest.
For some reason or other, most GI docs are totally stymied when they encounter MC - some of them can diagnose it, but they can't for the life of them, figure out how to effectively treat it. Fortunately, by comparing notes with the experts on MC, (namely, those who have it), we have compiled probably the largest database in the world, on MC, and how to treat it. The bottom line is that no one understands MC, unless they have it, and that puts the medical profession at a big disadvantage, because very few of them have it. We all have it here, (or we have a close relative under our care, who has it), so we truly understand how you feel, something that very, very few GI docs can honestly say.
Please feel free to ask anything, and we'll do our best to answer.
Again, welcome to the group.
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.
Hiya Marla and 
Great to have you aboard!
I agree with Tex - you definitely have lymphocytic colitis (LC), a type of MC (microscopic colitits). (Both are treated the same). It may be that your case is "mild" but it is still there and needs attention or it may progress. Are you experiencing any diarrhea? If not, your LC may have been caught extremely early.....perhaps you can reverse it without too much trouble.
You have two reasons to have MC......antibiotic treatment and treatment with proton inhibitors. Both are known to set the MC in motion. Hopefully, you aren't using NSAIDs like aspirin, Motrin, Advil, etc., which are another cause. You might want to consider adding a probiotic in order to help replace the "good" bacteria in your gut that have been wiped out.
The pepto can only be used short-term - up to about 8 weeks max is recommended I think. So it will be important to talk to your doc (and gather ideas from the board here) about what to do next.
Gotta run......will catch you later.
Polly
Great to have you aboard!
I agree with Tex - you definitely have lymphocytic colitis (LC), a type of MC (microscopic colitits). (Both are treated the same). It may be that your case is "mild" but it is still there and needs attention or it may progress. Are you experiencing any diarrhea? If not, your LC may have been caught extremely early.....perhaps you can reverse it without too much trouble.
You have two reasons to have MC......antibiotic treatment and treatment with proton inhibitors. Both are known to set the MC in motion. Hopefully, you aren't using NSAIDs like aspirin, Motrin, Advil, etc., which are another cause. You might want to consider adding a probiotic in order to help replace the "good" bacteria in your gut that have been wiped out.
The pepto can only be used short-term - up to about 8 weeks max is recommended I think. So it will be important to talk to your doc (and gather ideas from the board here) about what to do next.
Gotta run......will catch you later.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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katinchatt
- Adélie Penguin
- Posts: 141
- Joined: Sat Oct 11, 2008 12:28 pm
- Location: Chattanooga
Hi Marla,
I'm so glad you decided to "come on over", you'll soon see, this is where you'll find all the help you need. I'm pretty sure the site, where I found you wandering all alone, couldn't have helped much.
Tex is right about the Entocort, that's exactly what I am on (2 weeks tomorrow), and I've see a HUGE improvement already. I am still taking Lomotil as well, a few times a day, but it's a far cry from the, 8 - I was taking at my peak. By the way, you can take up to 8 Lomotil a day. Librax does help with the cramping, but I've never taken more than 5 per day, check with your Pharmacist about that, or maybe someone here may know the "MAX" dose. Remember too that both Lomotil and Librax will make you feel tired and out of it. Also, they are only treating your symptoms, now it's time to start healing.
Please, just hang in there ~ I PROMISE it will get better. First things first, you have to get your symptoms under control before you can think about anything long term. Aside from the meds., just having this disease, especially when it's active, causes us to be in a "fog". Please try and get some meds ASAP. Goodness and with a new baby, my heart really goes out to you
Call your Doctor today!!
Not that it matters now, but can I ask what Proton Pump Inhibitors and other GERD meds you took, and for how long? Also, the fact that you are so young may have thrown a few of your Doctors off a bit. This is usually found in those that have a few more years on them ;) but it's not impossible either, as you now know. The fact that you successfully breastfed for 6 months may have helped you out initially after your high doses of antibiotics. The Oxytocin released increased your pain tolerance level, but then all good things come to and end, and our raging hormones kick back in, especially estrogen, may play a small part in some MC patients. That's a theory anyway, and one of the reasons it may strike more women then men.
How is Portland?
So, so glad your here, your in the very best of hands!
Kat
I'm so glad you decided to "come on over", you'll soon see, this is where you'll find all the help you need. I'm pretty sure the site, where I found you wandering all alone, couldn't have helped much.
Tex is right about the Entocort, that's exactly what I am on (2 weeks tomorrow), and I've see a HUGE improvement already. I am still taking Lomotil as well, a few times a day, but it's a far cry from the, 8 - I was taking at my peak. By the way, you can take up to 8 Lomotil a day. Librax does help with the cramping, but I've never taken more than 5 per day, check with your Pharmacist about that, or maybe someone here may know the "MAX" dose. Remember too that both Lomotil and Librax will make you feel tired and out of it. Also, they are only treating your symptoms, now it's time to start healing.
Please, just hang in there ~ I PROMISE it will get better. First things first, you have to get your symptoms under control before you can think about anything long term. Aside from the meds., just having this disease, especially when it's active, causes us to be in a "fog". Please try and get some meds ASAP. Goodness and with a new baby, my heart really goes out to you
Call your Doctor today!! Not that it matters now, but can I ask what Proton Pump Inhibitors and other GERD meds you took, and for how long? Also, the fact that you are so young may have thrown a few of your Doctors off a bit. This is usually found in those that have a few more years on them ;) but it's not impossible either, as you now know. The fact that you successfully breastfed for 6 months may have helped you out initially after your high doses of antibiotics. The Oxytocin released increased your pain tolerance level, but then all good things come to and end, and our raging hormones kick back in, especially estrogen, may play a small part in some MC patients. That's a theory anyway, and one of the reasons it may strike more women then men.
How is Portland?
So, so glad your here, your in the very best of hands!
Kat
Marla and Kat,
The reason why MC symptoms take a hike during pregnancy and lactation, is because the high progesterone levels are protective against MC.
Tex
The reason why MC symptoms take a hike during pregnancy and lactation, is because the high progesterone levels are protective against MC.
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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katinchatt
- Adélie Penguin
- Posts: 141
- Joined: Sat Oct 11, 2008 12:28 pm
- Location: Chattanooga
Interesting! I keep finding more and more, albeit small, findings regarding hormones as triggers or "masks". Also Tex, what about all us with Thyroid issues.........much more than the norm, right? I couldn't find a "poll" for that, but I've ready many, many Thyroid stories here.Tex wrote:
The reason why MC symptoms take a hike during pregnancy and lactation, is because the high progesterone levels are protective against MC.
Thanks,
Hi Kat,
There's a forum dedicated to polls, (IOW, we move them there after a while), and the "Thyroid" poll is here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783
Yes, the prevalence of thyroid problems in this country is claimed to be between 7 and 8 %, with about another 4 % "suspected", but undiagnosed. As you can see from the poll results, members of this board who responded to the poll, showed a 57 % rate of diagnosed issues, plus another 18 % with suspected thyroid issues. The diagnosed cases among members, is 8 times as high as the national rate among the general population. That's 800 % of the U. S. rate, which is a pretty profound correlation.
We have a lot of medical differences when compared with the general population. Look at the current tonsillectomy poll, for example. 60 % of us no longer have our tonsils, compared with 20 % for the general population, that's 3 times the rate, or 300 %. Both of these issues are immune system related, of course
Tex
There's a forum dedicated to polls, (IOW, we move them there after a while), and the "Thyroid" poll is here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783
Yes, the prevalence of thyroid problems in this country is claimed to be between 7 and 8 %, with about another 4 % "suspected", but undiagnosed. As you can see from the poll results, members of this board who responded to the poll, showed a 57 % rate of diagnosed issues, plus another 18 % with suspected thyroid issues. The diagnosed cases among members, is 8 times as high as the national rate among the general population. That's 800 % of the U. S. rate, which is a pretty profound correlation.
We have a lot of medical differences when compared with the general population. Look at the current tonsillectomy poll, for example. 60 % of us no longer have our tonsils, compared with 20 % for the general population, that's 3 times the rate, or 300 %. Both of these issues are immune system related, of course
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.
Yup looks like MC to me. Boarderline just means it isnt horrible yet. Many people suffer for years and years and that is when the dx becomes clearer. You are lucky that you caught this quickly and you can do something about it.
Have you put any thought into what you would like to try? Meds vs diet?
Have you put any thought into what you would like to try? Meds vs diet?
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
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marmiran23
- Posts: 7
- Joined: Wed Nov 12, 2008 11:38 am
Thank you so much everyone for responding! And not only did I get responses, you all have given me insightful, thought out advice--something I have yet to find w/ my medical doctors. I really, REALLY appreciate the time each of you have taken out of your day to write me.
Well, this morning I met w/ my primary doc, who besides the fact is incredibly easy to schedule appts w/ a day in advance, is pretty much useless. I haven't seen him since May, when he sent me off on my adventure to the GI docs. Needless to say, he didn't remember who I was so I had to "refresh his memory" which kind of pisses me off b/c it just adds to the whole impersonal experience of it all. He doesn't remember me b/c he doesn't care about me, b/c he doesn't know me. But I can't fault him on that b/c he has a million other patients to deal with. I'm just another number.
When I gave him the pathology results which state the "borderline MC" he told me that he didn't know what that was and that he thinks I have IBS. I said, "the GI doc told me I don't have IBS. He said 'I wish I could tell you it's IBS but it isn't, its MC'". But my PCP just wouldn't accept that. He said that an increase in lymphocytes is normal and if I were to get checked out in 6 months, there probably wouldn't be any inflammation. I said to him "MC is real. you know that don't you?" he said "I've never heard of it, but yes I know colitis is real." Can you believe that?
So he gave me a prescription for Bentyl for the spasms. That's right, let's just continue to "mask" the symptoms instead of fixing the problem. He even offered me Vicadin. I literally felt like I was just meeting w/ a drug dealer. I told him I don't like Vicadin and that I really don't like to take a lot of drugs. He was shocked and said "most people come to me to get prescriptions."
Well, this morning I met w/ my primary doc, who besides the fact is incredibly easy to schedule appts w/ a day in advance, is pretty much useless. I haven't seen him since May, when he sent me off on my adventure to the GI docs. Needless to say, he didn't remember who I was so I had to "refresh his memory" which kind of pisses me off b/c it just adds to the whole impersonal experience of it all. He doesn't remember me b/c he doesn't care about me, b/c he doesn't know me. But I can't fault him on that b/c he has a million other patients to deal with. I'm just another number.
When I gave him the pathology results which state the "borderline MC" he told me that he didn't know what that was and that he thinks I have IBS. I said, "the GI doc told me I don't have IBS. He said 'I wish I could tell you it's IBS but it isn't, its MC'". But my PCP just wouldn't accept that. He said that an increase in lymphocytes is normal and if I were to get checked out in 6 months, there probably wouldn't be any inflammation. I said to him "MC is real. you know that don't you?" he said "I've never heard of it, but yes I know colitis is real." Can you believe that?
So he gave me a prescription for Bentyl for the spasms. That's right, let's just continue to "mask" the symptoms instead of fixing the problem. He even offered me Vicadin. I literally felt like I was just meeting w/ a drug dealer. I told him I don't like Vicadin and that I really don't like to take a lot of drugs. He was shocked and said "most people come to me to get prescriptions."
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katinchatt
- Adélie Penguin
- Posts: 141
- Joined: Sat Oct 11, 2008 12:28 pm
- Location: Chattanooga
Marla,
Unfortunately that is typical, & YES we can believe your PCP said what he said. Fortunately, that's where this board comes in. However, you will have to MAKE one of your Doctors behave like a Doctor, you can't simply go to your pharmacy and ask for the meds you need in the short term. So, maybe someone will come along and advise you on how that can be accomplished. I simply called my GI and told him to call me in a prescription for Entocort. He did, much to my delight & surprise. By doing that I let him know that I knew what I needed! Letting him know you are indeed educating yourself about the matter will actually be doing him a favor. Give it a try, all he can do is say no. If he doesn't, I'd be on a phone finding a new GI, PCP, or both.
I agree that you are lucky in that your MC was possibly caught early, that's another reason why it's important that you get it under control quickly. In the long run, you'll be glad you did, I assume remission could come rather quickly. Stay on your Lomotil and Librax so your symptoms don't get out-of-control, and as much as possible try and not stress out (to much ;) It's frustrating I know, we all know, but sooner or later YOU WILL find a Doctor willing to work with you.
Question; Do you think you can tolerate Pepto Bismal, 3 tabs. 3 x per day? I know he told you to take 4 a day, but that won't touch this. I would think, if you can, it would definitely be better than nothing or until you get better meds. Some seem to do quite well on it.
Polly, Tex ~ please correct me if I'm wrong on the above Pepto advice.
Unfortunately that is typical, & YES we can believe your PCP said what he said. Fortunately, that's where this board comes in. However, you will have to MAKE one of your Doctors behave like a Doctor, you can't simply go to your pharmacy and ask for the meds you need in the short term. So, maybe someone will come along and advise you on how that can be accomplished. I simply called my GI and told him to call me in a prescription for Entocort. He did, much to my delight & surprise. By doing that I let him know that I knew what I needed! Letting him know you are indeed educating yourself about the matter will actually be doing him a favor. Give it a try, all he can do is say no. If he doesn't, I'd be on a phone finding a new GI, PCP, or both.
I agree that you are lucky in that your MC was possibly caught early, that's another reason why it's important that you get it under control quickly. In the long run, you'll be glad you did, I assume remission could come rather quickly. Stay on your Lomotil and Librax so your symptoms don't get out-of-control, and as much as possible try and not stress out (to much ;) It's frustrating I know, we all know, but sooner or later YOU WILL find a Doctor willing to work with you.
Question; Do you think you can tolerate Pepto Bismal, 3 tabs. 3 x per day? I know he told you to take 4 a day, but that won't touch this. I would think, if you can, it would definitely be better than nothing or until you get better meds. Some seem to do quite well on it.
Polly, Tex ~ please correct me if I'm wrong on the above Pepto advice.
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marmiran23
- Posts: 7
- Joined: Wed Nov 12, 2008 11:38 am
Kat,
No I definitely don't think I could tolerate the pepto. Actually, I know I wouldn't be able to. I have lost so much weight in this whole process (I was down to 99lbs but have gained 2lbs thank goodness), and my body is extremely sensitive to everything I put in it. I just ordered online BioGia Probiotics. I'm also going to start taking Acidophilus. My GI said that my Vitamin A, D and calcium levels are extremely low, so I'm going to start taking supplements for those as well.
My goal is to get back to my healthy pre-pregnancy weight of 117lbs. Oh, and no one knows why I've lost all this weight. My GI doc says that it isn't related to the MC, but how can that be? Why are my vitamin levels so low? Am I not absorbing them the way I should be? These docs give me no support.
I do think that the high dosage of antibiotics used after my hemorrage killed off my good bacteria and like what you and Tex said, breastfeeding for the 6 months hid my MC symptoms. But now I'm wondering if the meds I was taking for the GERD misdiagnosis are the culprit. I took Aciphex, prilosec, gaviscon, zantac.
I'm really scared to get on any type of steroid. I don't know if my body would be able to handle it. So I'm going to try the Probiotics first.
No I definitely don't think I could tolerate the pepto. Actually, I know I wouldn't be able to. I have lost so much weight in this whole process (I was down to 99lbs but have gained 2lbs thank goodness), and my body is extremely sensitive to everything I put in it. I just ordered online BioGia Probiotics. I'm also going to start taking Acidophilus. My GI said that my Vitamin A, D and calcium levels are extremely low, so I'm going to start taking supplements for those as well.
My goal is to get back to my healthy pre-pregnancy weight of 117lbs. Oh, and no one knows why I've lost all this weight. My GI doc says that it isn't related to the MC, but how can that be? Why are my vitamin levels so low? Am I not absorbing them the way I should be? These docs give me no support.
I do think that the high dosage of antibiotics used after my hemorrage killed off my good bacteria and like what you and Tex said, breastfeeding for the 6 months hid my MC symptoms. But now I'm wondering if the meds I was taking for the GERD misdiagnosis are the culprit. I took Aciphex, prilosec, gaviscon, zantac.
I'm really scared to get on any type of steroid. I don't know if my body would be able to handle it. So I'm going to try the Probiotics first.
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katinchatt
- Adélie Penguin
- Posts: 141
- Joined: Sat Oct 11, 2008 12:28 pm
- Location: Chattanooga
Marla,
I hate to hear that you can't tolerate the Pepto. I was on it for 2 weeks before the Entocort and I saw improvement. Entocort is one of the "safer" drugs used to treat MC, but of course there are side effects with most. I just had to weigh those against how much I wanted to heal. I understand about the weight loss as well, I lost 20 lbs. in 2 months, if your GI can't grasp that FACT, I'm afraid he is lacking in the "smarts" department.
I'm eating more, but not gaining any of it back ~ yet. Perhaps due to the fact that I watch what I eat very closely, low fat, no dairy, no grains (I'm OK w/rice).
I took Aciphex for years for GERD, and did fine on it. Then earlier this year I was switched to Nexium - 3 months later my symptoms began. Nexium for sure, and I think Prilosec have documented cases as being triggers for MC. So needless to say, I stopped the Nexium. However now that I'm off dairy (I drink Rice Milk) I don't have the need to take my GERD meds.
Hang in here, there will be more advice to come!
I hate to hear that you can't tolerate the Pepto. I was on it for 2 weeks before the Entocort and I saw improvement. Entocort is one of the "safer" drugs used to treat MC, but of course there are side effects with most. I just had to weigh those against how much I wanted to heal. I understand about the weight loss as well, I lost 20 lbs. in 2 months, if your GI can't grasp that FACT, I'm afraid he is lacking in the "smarts" department.
I'm eating more, but not gaining any of it back ~ yet. Perhaps due to the fact that I watch what I eat very closely, low fat, no dairy, no grains (I'm OK w/rice). I took Aciphex for years for GERD, and did fine on it. Then earlier this year I was switched to Nexium - 3 months later my symptoms began. Nexium for sure, and I think Prilosec have documented cases as being triggers for MC. So needless to say, I stopped the Nexium. However now that I'm off dairy (I drink Rice Milk) I don't have the need to take my GERD meds.
Hang in here, there will be more advice to come!
MC affect almost everyone's weight. Most patients lose weight, while some gain weight, which is similar to the way that celiac disease affects patients. MC usually causes a malabsorption problem too, again, similar to coeliac sprue. Specifically, MC adversely affects fat absorption in the small intestine, and since virtually all vitamins are fat-soluble, most of those nutrients pass right on through with the undigested fat, and provide very little to no benefit to the body. Most docs don't seem to recognize the seriousness of that issue, (along with a lot of other problems that they seem to be unaware of).Marla wrote:Oh, and no one knows why I've lost all this weight. My GI doc says that it isn't related to the MC, but how can that be? Why are my vitamin levels so low? Am I not absorbing them the way I should be? These docs give me no support.
Aciphex and Prilosec are proton pump inhibitors, of course, and as Kat pointed out, several of them have been recognized to trigger MC for some individuals. Gaviscon and Zantac are OTC meds, of course, and not known, (to me, at least), to be a risk for triggering or exacerbating MC symptoms.
Priobotics are generally recommended for MC patients, but to date, no one here has been able to verify that they have been able to get any significant, long-term benefits from any of them, and a few members have reported violent reactions to certain probiotics. In general, they may be be somewhat helpful, but don't expect any dramatic results from them.
The bottom line is: if you want to control your MC symptoms without meds, the only proven treatment is the gluten free diet, and many of us here have used it for years, to achieve remission, and maintain it, without any need for meds. Most of us also have to eliminate dairy products from our diets, (at least until our gut has time to heal), and about half of us have to eliminate soy products. Some members, with more severe cases, have to also eliminate additional foods, at least until they heal.
The safest treatment, of course, is the diet, since it has no known adverse side effects. In fact, people who faithfully follow the GF diet, live longer than the general population, on the average, which proves that it's a healthy diet.
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 Marla,
I wanted to jump in and say ! At 26, I'm another "youngster" around here. My symptoms started when I was 21, I was diagnosed with Hashimoto's thyroiditis at 22, and now, finally, after years of being told I had IBS, I was diagnosed with LC and celiac in July. I have absolutely no idea what caused this, other than a general family propensity to have autoimmune issues. This was just the card I drew!
I can understand your frustration with docs. I had a sympathetic laugh for your feeling that you're just meeting with a drug dealer, because I often feel the same way.
I do feel that something has gone terribly wrong with our healthcare system, and perhaps it's symptomatic of larger issues in our culture, when medical care is reduced to handing out pills. Unfortunately, it seems like the drug companies and the insurance companies have more say in our healthcare than anyone. Ick.
My original point, though, was to tell you that I have tried Entocort. It didn't work for me at all, but it has worked well for some people. I understand your fear of drugs, particularly when it looks like your LC was drug-induced, but you might want to give it a try, especially since you are struggling so with gaining weight. If not, then do try the GF diet. It's hard at first, but once you get a system going, it's not so bad. It's tough to know when to use meds and when not to, to balance the side effects with the benefits. Penicillin was a godsend, but I think we may have too much of a good thing!
Hey, Tex! I just thought of something. I wonder if there is any connection between what causes our MC (autoimmune or drug/lifestyle induced--if there's any way to tell the difference) and what type of treatment we respond to (diet vs. meds)?
Good luck, Marla.
Courtney
I wanted to jump in and say
! At 26, I'm another "youngster" around here. My symptoms started when I was 21, I was diagnosed with Hashimoto's thyroiditis at 22, and now, finally, after years of being told I had IBS, I was diagnosed with LC and celiac in July. I have absolutely no idea what caused this, other than a general family propensity to have autoimmune issues. This was just the card I drew!I can understand your frustration with docs. I had a sympathetic laugh for your feeling that you're just meeting with a drug dealer, because I often feel the same way.
I do feel that something has gone terribly wrong with our healthcare system, and perhaps it's symptomatic of larger issues in our culture, when medical care is reduced to handing out pills. Unfortunately, it seems like the drug companies and the insurance companies have more say in our healthcare than anyone. Ick.My original point, though, was to tell you that I have tried Entocort. It didn't work for me at all, but it has worked well for some people. I understand your fear of drugs, particularly when it looks like your LC was drug-induced, but you might want to give it a try, especially since you are struggling so with gaining weight. If not, then do try the GF diet. It's hard at first, but once you get a system going, it's not so bad. It's tough to know when to use meds and when not to, to balance the side effects with the benefits. Penicillin was a godsend, but I think we may have too much of a good thing!
Hey, Tex! I just thought of something. I wonder if there is any connection between what causes our MC (autoimmune or drug/lifestyle induced--if there's any way to tell the difference) and what type of treatment we respond to (diet vs. meds)?
Good luck, Marla.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08