Hi,
I was diagnosied with MC this past 6/2010 and prior to the colonoscopic had D for a few months. Since the colonoscopy, literally that day, I have had nothing but C. I was put on Asacol to address the inflammation, but I did not tolerate that medication well and had to stop. In a subsequent sigmoidoscopy this past 9/2010 the biopsies revealed that I still have MC (Lymphocytic).
After my first GI doc did little in the way of followup, I sought out a second GI doc who told me that I have more IBS than MC because of the C. He also started me on Miralax and some dietary changes which have both been helpful.
I have a couple questions:
(1) Is there anyone else who has had MC with C (+ painful gas/bloating when triggered by certain foods)? I feel like a real loner here :) - but I definitely have the inflammation, hemmhoroids, etc. - and two sets of biopsies have a low probability of lying. The Miralax should help eliminate/reduce this. How have folks treated this in the past if so?
(2) There was discussion about starting me on Endocort for 12 weeks. Is this safe? Will this increase constipation? I am interested in personal experiences to this end. I tend to be very sensitive to medications - what is the pediatric dose equivalent of this med? I am also moving overseas and would likely complete my treatment (final dose of endocort) over there. Thoughts?
I never had any prior condition in my life (I am in my mid-30's) I and could eat just about anything. They believe it was stress/travel-related induced. The constipation is just bizarre as well given everything I have read about this condition...
Thanks!
MC with C?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sanbog
from Hong Kong.
You are not alone with your symptoms. C is a symptom of MC though not as common as D. Also it can fluctuate from C to D. I very much doubt it is "IBS" because of C.
I think that Entocort is not a great idea when you gave C, but I will let other more knowledgeable comment on that.
Best wishes in your journey to remission, this is the best place to learn and get support! Ant
from Hong Kong.You are not alone with your symptoms. C is a symptom of MC though not as common as D. Also it can fluctuate from C to D. I very much doubt it is "IBS" because of C.
I think that Entocort is not a great idea when you gave C, but I will let other more knowledgeable comment on that.
Best wishes in your journey to remission, this is the best place to learn and get support! Ant
-
natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Welcome to the board!
Like Ant said this is the best place to be with MC (I just noticed that rhymes!) But anyway moving on...
Something that you will find out prety quickly when looking around this board is that we all are completley different with our treatments etc, well you will find some things in common, but one thing that has been established is that our MC seems to be completley unique to us all! (Kind of daunting, but we are all in a similar situation).For example my MC was triggered by medication, whereas others it has been through outher illnesses, food intolerances and other means.
Hope the move abroad goes ok, where are you moving too?
Like Ant said this is the best place to be with MC (I just noticed that rhymes!) But anyway moving on...
Something that you will find out prety quickly when looking around this board is that we all are completley different with our treatments etc, well you will find some things in common, but one thing that has been established is that our MC seems to be completley unique to us all! (Kind of daunting, but we are all in a similar situation).For example my MC was triggered by medication, whereas others it has been through outher illnesses, food intolerances and other means.
Hope the move abroad goes ok, where are you moving too?
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Hi Sanbog,
Welcome to the board. I agree with Ant that Entocort may not be an ideal treatment for MC, if C is the primary symptom. Quite a few members using Entocort to control chronic D, eventually reach a point where they have to reduce the dose, (or stop taking it altogether), because of C.
We do have a few members with C-dominant MC, but I have a hunch that this phase of the disease is much more prevalent than the medical community realizes, because of the simple fact that if the primary symptom is C, very few GI specialists will suspect MC, and if you don't look for MC, you can't find it, (MC can only be diagnosed by a competent pathologist, examining biopsy slides from the patient's colon, under a microscope), so virtually all cases of C-dominant MC are misdiagnosed as IBS.
For C-dominant MC, there is no ideal medical, (drug), treatment that I'm aware of, (though as you have found, a few things may help). For most of us, MC does not go away after a short treatment regimen. Once triggered, it is always there, so we have to maintain remission either by diet, or by a maintenance dose of an appropriate drug. For D-dominant MC, I would suspect that diet is by far the best choice of treatment, but as Naty mentioned, we are all different, so we each work out a customized treatment program that works best for us, individually. The reason why diet is such an effective treatment, is because when the genes that predispose to MC are triggered, genes that predispose to gluten-sensitivity are also usually triggered at the same time. Most of us are also casein-sensitive, (casein is the primary protein in all dairy products), and about half of us are soy-sensitive. By avoiding the foods to which we are sensitive, (avoiding them 100%), we are able to live an otherwise normal life). It takes a long time for the gut to heal, so it almost always takes several months for the benefits of the diet to begin showing up, but it does work, and it is very effective, (and much safer than drugs).
Unfortunately, most GI docs are unaware of the gluten/casein issue for MC patients, so they will argue that diet has nothing to do with MC. We are forced to ignore their closed-minded thinking, and treat ourselves, because most of us have found that drugs alone, will not completely control our symptoms. Many of us use a combination of diet and drugs, and even over-the-counter diarrhea treatments such as Imodium. (Don't try to use Imodium to treat C-dominant MC, though, because it will cause the C to be worse). Pepto-Bismol, (in combination with the GF diet), is an effective treatment for MC, (it has an 85% efficacy rate in trials), but I'm not sure that it would be safe for C-dominant MC. It might just make the C worse.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I agree with Ant that Entocort may not be an ideal treatment for MC, if C is the primary symptom. Quite a few members using Entocort to control chronic D, eventually reach a point where they have to reduce the dose, (or stop taking it altogether), because of C.
We do have a few members with C-dominant MC, but I have a hunch that this phase of the disease is much more prevalent than the medical community realizes, because of the simple fact that if the primary symptom is C, very few GI specialists will suspect MC, and if you don't look for MC, you can't find it, (MC can only be diagnosed by a competent pathologist, examining biopsy slides from the patient's colon, under a microscope), so virtually all cases of C-dominant MC are misdiagnosed as IBS.
For C-dominant MC, there is no ideal medical, (drug), treatment that I'm aware of, (though as you have found, a few things may help). For most of us, MC does not go away after a short treatment regimen. Once triggered, it is always there, so we have to maintain remission either by diet, or by a maintenance dose of an appropriate drug. For D-dominant MC, I would suspect that diet is by far the best choice of treatment, but as Naty mentioned, we are all different, so we each work out a customized treatment program that works best for us, individually. The reason why diet is such an effective treatment, is because when the genes that predispose to MC are triggered, genes that predispose to gluten-sensitivity are also usually triggered at the same time. Most of us are also casein-sensitive, (casein is the primary protein in all dairy products), and about half of us are soy-sensitive. By avoiding the foods to which we are sensitive, (avoiding them 100%), we are able to live an otherwise normal life). It takes a long time for the gut to heal, so it almost always takes several months for the benefits of the diet to begin showing up, but it does work, and it is very effective, (and much safer than drugs).
Unfortunately, most GI docs are unaware of the gluten/casein issue for MC patients, so they will argue that diet has nothing to do with MC. We are forced to ignore their closed-minded thinking, and treat ourselves, because most of us have found that drugs alone, will not completely control our symptoms. Many of us use a combination of diet and drugs, and even over-the-counter diarrhea treatments such as Imodium. (Don't try to use Imodium to treat C-dominant MC, though, because it will cause the C to be worse). Pepto-Bismol, (in combination with the GF diet), is an effective treatment for MC, (it has an 85% efficacy rate in trials), but I'm not sure that it would be safe for C-dominant MC. It might just make the C worse.
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.
Hi Sanbog,
Welcome!
Trying eliminating the foods that cause a reaction for most of us can be worthwhile - gluten and dairy (and for half of us, soy). Gluten does not cause me D for example, but is responsible for other symptoms. See what happens if you remove it totally from your diet (an subsititute with more fruit and vegies).
I am guessing you have already increased the fibre in your diet. Are you also making sure to drink heaps of water?
Lyn
Welcome!
Trying eliminating the foods that cause a reaction for most of us can be worthwhile - gluten and dairy (and for half of us, soy). Gluten does not cause me D for example, but is responsible for other symptoms. See what happens if you remove it totally from your diet (an subsititute with more fruit and vegies).
I am guessing you have already increased the fibre in your diet. Are you also making sure to drink heaps of water?
Lyn