Visit the Microscopic Colitis Foundation Website
It's been a long time
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
It's been a long time
Hello everyone. I have been away for sometime ( and I have to admit- it's been long enough that I don't recognize names here!) - I've been dealing with another health issue that came up- an unpleasant one ( yet another, 'rare' autoimmune disease- oh yea ). Anyway. I have that under control and now my concerns have come back to my collagenous colitis. I have never taken anything for it, but was doing 'pretty good' controlling it with diet- not totally gone or anything, but it was to wear it seemed liveable- watery D in the mornings, and usually having to go 3-4 times then, but usually ok, you know. Even some quite long periods of 'normal' stools. Now I'm having a persistent D again though (since about this August)- I believe this is because I got really cocky because I was doing so well, and began eating off my gluten free diet. Anyway, I am worrying that perhaps it's time I thought of accepting 'treatment'. I'm very uncomfortable with long term medication though. So tell me, do you all think I'm at risk for cancer or something if I just live with the D and don't use meds? ( I can function fine- my D is usually several bouts in the mornings, and from time to time an afternoon or evening bout)- In other words- 'untreated'- I've had this condition for a long time- longer than since diagnosed; diagnosis was about 5- 6 years ago. Your thoughts would be appreciated. It is NICE to have somewhere to come to ask these things! (Can't talk about it at work, that's for sure).
Hi Mia,
Welcome back - it's good to see you posting, though I wish it were for a more pleasant reason.
You've asked a very good question. I truly believe that no one in the world can provide an accurate answer, but we'll do our best. Am I correct in assuming that the reason you are asking that question, is because you don't want to take meds for CC, for the rest of your life, and you're not sure that you can stick to a GF diet? Or is it because the diet isn't working for you? If that's the case, we can probably help you to fine tune your diet, and stop the D and other symptoms.
Whichever it is, here are my thoughts on the risks that you might be facing, but remember - I'm not a doctor, and no one in the world can predict what may happen in the future, concerning this disease, for any of us. To be honest, as far as I can determine, based on published research data on the internet, the statistical odds of developing lymphoma, (or any other cancer that might be related to your CC), are relatively small - probably on the order of a few percent or less.
However, the risk of your CC evolving into UC, (Ulcerative Colitis), may be significantly greater. The literature doesn't reflect that increased risk, (since only a handful of cases have been documented so far), but among the members of this board, to date, while no one has reported any cancer diagnoses related to MC, at least two members that I'm aware of, have had their MC progress into UC. Both members were not treating their MC, (that is, they were not on a GF diet, nor were they taking any meds to control it), because they were asymptomatic - that is to say, they were enjoying spontaneous remission. This suggests to me that some type of treatment, (either diet or a med), may be advisable, whether symptoms are present, or not.
Is D your only symptom, or do you have joint and muscle aches and pains, cramps, headaches, bloating, etc.? The reason I ask, is because my D pattern was a lot like yours, during the day, but the aches and pains, cramps and bloating, etc., were so bad that I would have been willing to do just about anything to get away from all that misery.
Tex
Welcome back - it's good to see you posting, though I wish it were for a more pleasant reason.
You've asked a very good question. I truly believe that no one in the world can provide an accurate answer, but we'll do our best. Am I correct in assuming that the reason you are asking that question, is because you don't want to take meds for CC, for the rest of your life, and you're not sure that you can stick to a GF diet? Or is it because the diet isn't working for you? If that's the case, we can probably help you to fine tune your diet, and stop the D and other symptoms.
Whichever it is, here are my thoughts on the risks that you might be facing, but remember - I'm not a doctor, and no one in the world can predict what may happen in the future, concerning this disease, for any of us. To be honest, as far as I can determine, based on published research data on the internet, the statistical odds of developing lymphoma, (or any other cancer that might be related to your CC), are relatively small - probably on the order of a few percent or less.
However, the risk of your CC evolving into UC, (Ulcerative Colitis), may be significantly greater. The literature doesn't reflect that increased risk, (since only a handful of cases have been documented so far), but among the members of this board, to date, while no one has reported any cancer diagnoses related to MC, at least two members that I'm aware of, have had their MC progress into UC. Both members were not treating their MC, (that is, they were not on a GF diet, nor were they taking any meds to control it), because they were asymptomatic - that is to say, they were enjoying spontaneous remission. This suggests to me that some type of treatment, (either diet or a med), may be advisable, whether symptoms are present, or not.
Is D your only symptom, or do you have joint and muscle aches and pains, cramps, headaches, bloating, etc.? The reason I ask, is because my D pattern was a lot like yours, during the day, but the aches and pains, cramps and bloating, etc., were so bad that I would have been willing to do just about anything to get away from all that misery.
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 mia....
ive got all those symptoms tex mentioned and i tried not taking asacole for a few days but my d came back...so i decided to continue with the asacole...even though tex and i have had a conversation about the side effects of asacole and that i should probably stop it...im still in the process of making that decision...well at least if i do stop i will probably ask for entocort...I am trying to stay gf ...but sometimes something has sneaked in there...not deliberately you understand...
ive got all those symptoms tex mentioned and i tried not taking asacole for a few days but my d came back...so i decided to continue with the asacole...even though tex and i have had a conversation about the side effects of asacole and that i should probably stop it...im still in the process of making that decision...well at least if i do stop i will probably ask for entocort...I am trying to stay gf ...but sometimes something has sneaked in there...not deliberately you understand...
Angy ;)