Hi all, I am getting so frustrated. Was diagnosed with LC in 2006 and it has been a struggle with me since then. I tried Asacol, Entocort, and now cholestyramine which has helped but starting all over again with the abdominal pain, mucous in my stools etc.. I dont have the diarrhea on a daily basis anymore, just really soft long thin stools. The abdominal pain is unbearable at times. GI doctor said I have a very severe case of IBS also. Does anyone else have both things going on and what do you do to help you? I am not taking Asacol or Entocort anymore. Do people with MC stay on Asacol lifelong or only when they have symptoms? Does this ever ever go AWAY? Tried the gluten diet. Doest seem to matter what I eat, its everything and anything that goes right thru me. I am also B12 deficient from all this. B12 injections once a month. I am thankful for this board. I feel alone at times and it is nice to know other people who suffer this miserable illness. I really really thought at times that I needed some psychological help because it has affected me mentally.
Thank you,
Deb
Im a mess!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Deb,
MC is a very complex disease, and it can affect us in many unexpected ways. I'm sorry that you're still having such a tough time with the disease.
Did Asacol and/or Entocort not provide any benefits, or did your GI doc just stop prescribing them to you? The reason why I ask, is because the cholestyramine does nothing to suppress the inflammation caused by MC, (which is probably why you are experiencing abdominal pain, and it's definitely the reason why you are passing so much mucus. Any portion of the GI tract will secrete copious amounts of mucus, if it senses something in the effluent that causes inflammation - it produces the additional mucus coating, to try to protect itself from additional inflammation. IOW, you are experiencing a fully-developed flare, because cholestyramine is a bile acid sequestrant, and it is not capable of fighting inflammation. The cholestyramine can control one of the symptoms of MC, (D), but it cannot attack the cause of the disease itself, namely, the inflammation.
Unused bile acids are normally reabsorbed in the terminal ileum. If the terminal ileum is incapable of absorbing the bile acids, then they pass into the colon, and attract water, due to their osmotic effect, which results in diarrhea. Cholestyramine makes the bile acids insoluble, and osmotically inactive, thus preempting the diarrhea that the bile acids might otherwise cause. The fact that cholestyramine prevents D for you, suggests that your terminal ileum has suffered a lot of damage to the villous architecture, and has lost most of it's ability to absorb not only bile acids, but also certain nutrients. In fact, the chances are very good that malabsorption is a widespread problem in your small intestine, and this, of course, is why you are deficient in vitamin B-12, (and probably other vitamins).
IBS is probably a moot point, for someone with MC. There is good reason to believe that IBS does not even exist, since there is no legitimate way to diagnose IBS - it is a default diagnosis. IOW, if a doctor cannot find anything else wrong with a patient, they diagnose the problem as IBS. They're too embarrassed to say, "I don't have the foggiest idea what's wrong with you", so they say, "You have IBS", instead. By the same token, if a doctor's prescribed treatment for MC does not bring relief, he or she claims that the reason it does not work, is because the patient also has IBS. The problem with this whole line of reasoning, is that if an IBS patient is subjected to a colonoscopy exam, and biopsy samples are taken, in most cases, the pathologist will discover that the patient has MC. IOW, IBS never existed in the first place - the doctor just didn't look for MC. You can't find MC unless you look for it, and the only way to accurately discover it, is by means of biopsy samples taken from the colon, and examined under a microscope, by someone who knows what to look for.
MC cannot be cured, so whatever treatment is used, has to be continued forever. A few patients with MC occasionally experience periods of spontaneous remission, (cessation of symptoms without any treatment), but for most of us, we have to continuously treat it, or it will quickly return.
How long did you try the gluten-free diet? Did you also cut out all dairy products, and products containing soy, at the same time? If not, it's not surprising that it did not bring relief. I also could not tell that I was gluten-sensitive, even though I kept a detailed diary of everything I ate, and how I felt, etc. I tried the diet for a year and a half, without any success, until I also cut out all diary, soy, sugar, and corn, and after I made those changes, I was in remission, within a week or two. Now, I can eat virtually anything, except gluten. Back then, though, everything seemed to make me sick. Gluten is a very insidious foe, for those who are sensitive to it.
MC is a very depressing disease. A surprisingly high number of people with MC, find that they need anti-depression medications, and/or anti-anxiety medications. You are certainly not alone with respect to those issues. They are side effects of the disease.
Please don't feel alone. We all feel your pain. Anytime you need support, or just a place to vent, this is the place for it.
Thank you for sharing your thoughts with us, and I hope you can find some relief, soon.
Tex
MC is a very complex disease, and it can affect us in many unexpected ways. I'm sorry that you're still having such a tough time with the disease.
Did Asacol and/or Entocort not provide any benefits, or did your GI doc just stop prescribing them to you? The reason why I ask, is because the cholestyramine does nothing to suppress the inflammation caused by MC, (which is probably why you are experiencing abdominal pain, and it's definitely the reason why you are passing so much mucus. Any portion of the GI tract will secrete copious amounts of mucus, if it senses something in the effluent that causes inflammation - it produces the additional mucus coating, to try to protect itself from additional inflammation. IOW, you are experiencing a fully-developed flare, because cholestyramine is a bile acid sequestrant, and it is not capable of fighting inflammation. The cholestyramine can control one of the symptoms of MC, (D), but it cannot attack the cause of the disease itself, namely, the inflammation.
Unused bile acids are normally reabsorbed in the terminal ileum. If the terminal ileum is incapable of absorbing the bile acids, then they pass into the colon, and attract water, due to their osmotic effect, which results in diarrhea. Cholestyramine makes the bile acids insoluble, and osmotically inactive, thus preempting the diarrhea that the bile acids might otherwise cause. The fact that cholestyramine prevents D for you, suggests that your terminal ileum has suffered a lot of damage to the villous architecture, and has lost most of it's ability to absorb not only bile acids, but also certain nutrients. In fact, the chances are very good that malabsorption is a widespread problem in your small intestine, and this, of course, is why you are deficient in vitamin B-12, (and probably other vitamins).
IBS is probably a moot point, for someone with MC. There is good reason to believe that IBS does not even exist, since there is no legitimate way to diagnose IBS - it is a default diagnosis. IOW, if a doctor cannot find anything else wrong with a patient, they diagnose the problem as IBS. They're too embarrassed to say, "I don't have the foggiest idea what's wrong with you", so they say, "You have IBS", instead. By the same token, if a doctor's prescribed treatment for MC does not bring relief, he or she claims that the reason it does not work, is because the patient also has IBS. The problem with this whole line of reasoning, is that if an IBS patient is subjected to a colonoscopy exam, and biopsy samples are taken, in most cases, the pathologist will discover that the patient has MC. IOW, IBS never existed in the first place - the doctor just didn't look for MC. You can't find MC unless you look for it, and the only way to accurately discover it, is by means of biopsy samples taken from the colon, and examined under a microscope, by someone who knows what to look for.
MC cannot be cured, so whatever treatment is used, has to be continued forever. A few patients with MC occasionally experience periods of spontaneous remission, (cessation of symptoms without any treatment), but for most of us, we have to continuously treat it, or it will quickly return.
How long did you try the gluten-free diet? Did you also cut out all dairy products, and products containing soy, at the same time? If not, it's not surprising that it did not bring relief. I also could not tell that I was gluten-sensitive, even though I kept a detailed diary of everything I ate, and how I felt, etc. I tried the diet for a year and a half, without any success, until I also cut out all diary, soy, sugar, and corn, and after I made those changes, I was in remission, within a week or two. Now, I can eat virtually anything, except gluten. Back then, though, everything seemed to make me sick. Gluten is a very insidious foe, for those who are sensitive to it.
MC is a very depressing disease. A surprisingly high number of people with MC, find that they need anti-depression medications, and/or anti-anxiety medications. You are certainly not alone with respect to those issues. They are side effects of the disease.
Please don't feel alone. We all feel your pain. Anytime you need support, or just a place to vent, this is the place for it.
Thank you for sharing your thoughts with us, and I hope you can find some relief, soon.
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.
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Hi Deb-----
I sympathize with you and whats going on--All the 3 meds that U mentioned didnt work for me---Colazal is what helped me get back to normal-
Also---my stools were always *watery* with mucous~~~~cant say *stomach pain*--just gurgleing~~~
U see the first GI didnt have a clue to MCC---I didnt know what to ask--who to ask--so I was sorta a *testing* machine???
Then got a GI ,in NYC, and cus I was so bad at that time I had to go on the dreaded PRED. plus Colazal which was the *magic* combination~~
I had some allergy reactions to a few *food* fillers---and if I remember correctly I think I was with Dr. Chapman for about 3 years~~~and am fine today~~
Its such a trial and error system to find the right combination but U WILL FIND IT!!!
Dont give up----yes--it is a horrible disease but U will find the right solution~~~
Barbara
I sympathize with you and whats going on--All the 3 meds that U mentioned didnt work for me---Colazal is what helped me get back to normal-
Also---my stools were always *watery* with mucous~~~~cant say *stomach pain*--just gurgleing~~~
U see the first GI didnt have a clue to MCC---I didnt know what to ask--who to ask--so I was sorta a *testing* machine???
Then got a GI ,in NYC, and cus I was so bad at that time I had to go on the dreaded PRED. plus Colazal which was the *magic* combination~~
I had some allergy reactions to a few *food* fillers---and if I remember correctly I think I was with Dr. Chapman for about 3 years~~~and am fine today~~
Its such a trial and error system to find the right combination but U WILL FIND IT!!!
Dont give up----yes--it is a horrible disease but U will find the right solution~~~
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
thanks for the replies
Well the GI doctor called me today. Need to start the asacol again and stay on it probably forever!! Im starting all over again with the abdominal pain and mucous in stools. The asacol did help before, but the problem with anything i ate gave me diarrhea was a problem. The cholestyramine helps with that. So hopefully with both the meds together I will feel some relief. I feel sometimes that I am a guinea pig because this is kind of a new illness for GI doctors isnt it??? They dont know the prognosis with anyone that has this from what I understand. All I know is Im going on a cruise in January and want to be able to eat!!!!.
I appreciate all the info on this since I am still gathering info myself on LC. Like what is the difference between LC and CC. Is one worse than the other? Can this lead to Ulceratiave colitis? I think its just as bad as ulcerative colitis and Crohns disease if you ask me.
P.s. How do you put the emotions on this
Never mind it worked!!!!
Deb
I appreciate all the info on this since I am still gathering info myself on LC. Like what is the difference between LC and CC. Is one worse than the other? Can this lead to Ulceratiave colitis? I think its just as bad as ulcerative colitis and Crohns disease if you ask me.
P.s. How do you put the emotions on this
Never mind it worked!!!!Deb
Deb,
CC was first described over 30 years ago, (in 1976), and LC was described about 4 or 5 years later. The only difference between the two is the diagnostic criteria - the symptoms and the treatment are identical. LC is diagnosed by counting the lymphocytes that have infiltrated between the cells of the epithelia of the colon. The normal count should be less than about 25, (usually less than 15), per unit of measure, under the microscope, but with LC, the count will be higher, usually between 35 and 100. CC is diagnosed by measuring the thickness of the sub-epithelial collagen bands, (in the lamina propria). If CC is present, the bands will be much thicker than normal, (several times as thick). The lymphocyte count will often be elevated with CC, also. However, when both diagnostic markers are present, the condition is usually referred to as simply MC. There are several other types of microscopic colitis, also, that are not seen as often, such as giant-cell MC, cryptal lymphocytic coloproctitis, clear cell colitis, (in children), paucicellular LC, etc.
Most GI docs are very unfamiliar with MC, because it is still considered to be a rare disease by the medical community as a whole, so it is not normally part of the training, in med schools, (at least, it hasn't been, in the past - hopefully that is changing, now). Because of that, there are only a handful of GI docs in this country who truly understand MC, and how to properly treat it. Most GI docs have never heard of the less common types of MC - they've only heard of CC and LC.
It is not common for MC to segue into UC, but yes, it is possible, and there are a few cases every year. The odds of this happening to any particular individual with MC, are very, very low, however.
Good luck with the Asacol treatment.
Tex
CC was first described over 30 years ago, (in 1976), and LC was described about 4 or 5 years later. The only difference between the two is the diagnostic criteria - the symptoms and the treatment are identical. LC is diagnosed by counting the lymphocytes that have infiltrated between the cells of the epithelia of the colon. The normal count should be less than about 25, (usually less than 15), per unit of measure, under the microscope, but with LC, the count will be higher, usually between 35 and 100. CC is diagnosed by measuring the thickness of the sub-epithelial collagen bands, (in the lamina propria). If CC is present, the bands will be much thicker than normal, (several times as thick). The lymphocyte count will often be elevated with CC, also. However, when both diagnostic markers are present, the condition is usually referred to as simply MC. There are several other types of microscopic colitis, also, that are not seen as often, such as giant-cell MC, cryptal lymphocytic coloproctitis, clear cell colitis, (in children), paucicellular LC, etc.
Most GI docs are very unfamiliar with MC, because it is still considered to be a rare disease by the medical community as a whole, so it is not normally part of the training, in med schools, (at least, it hasn't been, in the past - hopefully that is changing, now). Because of that, there are only a handful of GI docs in this country who truly understand MC, and how to properly treat it. Most GI docs have never heard of the less common types of MC - they've only heard of CC and LC.
It is not common for MC to segue into UC, but yes, it is possible, and there are a few cases every year. The odds of this happening to any particular individual with MC, are very, very low, however.
Good luck with the Asacol treatment.
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.
Dear Tex
You are so informative, Will u be my doctor 
Thank you so much for your help in explaining all this to me. This board is great and im so glad I found it. I should of never stopped the asacol but it wasnt helping with the diarrhea part of the problem. So now maybe the pain along with D will stay away.
Take care
Deb
Thank you so much for your help in explaining all this to me. This board is great and im so glad I found it. I should of never stopped the asacol but it wasnt helping with the diarrhea part of the problem. So now maybe the pain along with D will stay away. Take care
Deb
Thank you for the compliment - I appreciate it, even though you were joking. Sometimes I wish I had gone to med school, but I'm too old to start a new career now.
I certainly agree with you that this is a great site, because so many experts, (IOW, every one of us here), share personal experiences and insight, so that we all can learn from everyone else. After all, no one knows more about living with MC, than those who have to live with it every day.
If the Asacol doesn't bring relief, you might want to consider trying Entocort, again, or possibly changing your diet. Sometimes we have to keep trying, until we find a combination that works for us, since we are all different.
Thanks for the kind words,
Tex
Sometimes I wish I had gone to med school, but I'm too old to start a new career now. I certainly agree with you that this is a great site, because so many experts, (IOW, every one of us here), share personal experiences and insight, so that we all can learn from everyone else. After all, no one knows more about living with MC, than those who have to live with it every day.
If the Asacol doesn't bring relief, you might want to consider trying Entocort, again, or possibly changing your diet. Sometimes we have to keep trying, until we find a combination that works for us, since we are all different.
Thanks for the kind words,
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.