Medication Only
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Medication Only
After causally browsing the forum, I have to ask a quick question. Is there anyone here (like me) who treats their LC with medication alone?
Age: 51
What doesn't kill you, just makes you stronger.
What doesn't kill you, just makes you stronger.
Yes, there are quite a few, but they usually don't post very often. Maybe some of them will notice your post and respond.
Typically, there's much more discussion about control by diet, because it's complicated by the fact that there are so many possibilities, and it can be so difficult to track down all those sensitivities, including various testing programs. (And many members just plain don't like to take drugs, because there is no such thing as a drug that is totally free of undesirable side effects). Long-term drug use often leads to unpleasant consequences somewhere down the line. That said, it's certainly much better to use a drug to control your symptoms, than to just leave the disease untreated, because this disease can definitely lead to severe health deterioration, over time. Despite what most doctors claim, this disease is not benign for many of us. Untreated, it will typically cause other autoimmune diseases to develop, so it definitely behooves to try to control our symptoms as best we can, (to say nothing of the difference in quality of life between having the symptoms under control, or not).
With treatment programs involving meds only, you just take them, and they either work, or they don't. If they don't work, you just move on to trying the next one. Many members try the drugs first, and when they don't get complete relief from symptoms, they start exploring diet options, and they slowly fine-tune their diet until they either are able to wean off the drugs, or they are able to at least find a combination of diet and a med that controls their symptoms well, so that they can get on with their life.
At least, that's how I see it.
Tex
Typically, there's much more discussion about control by diet, because it's complicated by the fact that there are so many possibilities, and it can be so difficult to track down all those sensitivities, including various testing programs. (And many members just plain don't like to take drugs, because there is no such thing as a drug that is totally free of undesirable side effects). Long-term drug use often leads to unpleasant consequences somewhere down the line. That said, it's certainly much better to use a drug to control your symptoms, than to just leave the disease untreated, because this disease can definitely lead to severe health deterioration, over time. Despite what most doctors claim, this disease is not benign for many of us. Untreated, it will typically cause other autoimmune diseases to develop, so it definitely behooves to try to control our symptoms as best we can, (to say nothing of the difference in quality of life between having the symptoms under control, or not).
With treatment programs involving meds only, you just take them, and they either work, or they don't. If they don't work, you just move on to trying the next one. Many members try the drugs first, and when they don't get complete relief from symptoms, they start exploring diet options, and they slowly fine-tune their diet until they either are able to wean off the drugs, or they are able to at least find a combination of diet and a med that controls their symptoms well, so that they can get on with their life.
At least, that's how I see it.
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.
Skunk Ape,
Tex may give you a more detailed and scientific answer when time permits, as he has a broad and deep knowledge of the approaches used by many members here, over years, but here's a quick response:
Many members have used Entocort to bring symptom relief and move toward remission. If there *is* a trigger in the diet, though, then you would have to remain on Entocort indefinitely in order to maintain that remission - because without the Entocort in the system, the antigenic response in the body to the food (which the immune system now recognizes as though it is a pathogen) will still take place. Even with diet changes, most members here have had to wean gradually off Entocort - and it may take longer than most doctors realize for the Entocort to bring you to where you're hoping to go.
Entocort can be a huge help, and many people do tolerate it well (compared to my luck with Pepto - many people here have had an awful experience with that and with Asacol, but I did not). The very relief Entocort brings can sometimes make it harder to figure out which foods are trigger foods, and some people have additional detective work to do to determine those. There are many factors that affect which foods are problems for us, and some people have very few food problems, while others have quite a list.
If your MC/LC was caused by another medication, it's possible that your symptoms might stop when that other drug is discontinued. Given how long you've had symptoms, though, that seems like a long shot. For most of us, something 'kicks off' food intolerance, first and foremost to gluten (and almost as often to dairy). Once that switch is ON, it doesn't get turned off.
I'm guessing that like me, the gluten/diet connection to MC is big news to you. I was diagnosed a long time ago, and had a spontaneous remission before it came roaring back. During my "symptom-free" years, I often suspected bread was no longer my friend. I had stopped drinking beer, because it didn't "agree with me," and was eating much less bread and pasta by preference (and how I used to love that stuff). How I wish I had listened to my instincts. I wasn't symptom-free at all, just hovering till the next crisis.
Hope this helps,
Sara
Tex may give you a more detailed and scientific answer when time permits, as he has a broad and deep knowledge of the approaches used by many members here, over years, but here's a quick response:
Many members have used Entocort to bring symptom relief and move toward remission. If there *is* a trigger in the diet, though, then you would have to remain on Entocort indefinitely in order to maintain that remission - because without the Entocort in the system, the antigenic response in the body to the food (which the immune system now recognizes as though it is a pathogen) will still take place. Even with diet changes, most members here have had to wean gradually off Entocort - and it may take longer than most doctors realize for the Entocort to bring you to where you're hoping to go.
Entocort can be a huge help, and many people do tolerate it well (compared to my luck with Pepto - many people here have had an awful experience with that and with Asacol, but I did not). The very relief Entocort brings can sometimes make it harder to figure out which foods are trigger foods, and some people have additional detective work to do to determine those. There are many factors that affect which foods are problems for us, and some people have very few food problems, while others have quite a list.
If your MC/LC was caused by another medication, it's possible that your symptoms might stop when that other drug is discontinued. Given how long you've had symptoms, though, that seems like a long shot. For most of us, something 'kicks off' food intolerance, first and foremost to gluten (and almost as often to dairy). Once that switch is ON, it doesn't get turned off.
I'm guessing that like me, the gluten/diet connection to MC is big news to you. I was diagnosed a long time ago, and had a spontaneous remission before it came roaring back. During my "symptom-free" years, I often suspected bread was no longer my friend. I had stopped drinking beer, because it didn't "agree with me," and was eating much less bread and pasta by preference (and how I used to love that stuff). How I wish I had listened to my instincts. I wasn't symptom-free at all, just hovering till the next crisis.
Hope this helps,
Sara
So far I'm treating it with Asacol HD and imodium and doing ok. Next month I start a bariatric diet I will have most of my stomach removed next month. After that I will be on an (almost) 100% protein diet. Don't know for sure but I am told that may help my LC. However my main reason for surgury is to loose 100 lbs.
Age: 51
What doesn't kill you, just makes you stronger.
What doesn't kill you, just makes you stronger.
I am on Entocort and it has kept everything in check most of the time. I do find that if I eat something I shouldn't I still react even with the medication. For example, this morning I was pretty nervous about something and it went right to my gut sending me to the bathroom. It didn't last long and 2 Diarrhea Stop took care of it. So, I think Entocort works great, but you still have to watch the diet and stress.
Good luck with the surgery.
Nancy
Good luck with the surgery.
Nancy
I suppose you've encountered quite a few people who have tried to talk you out of this surgery, so I'll just step in line. If I were you, I would put it off at least until you try changing your diet to eliminate gluten, lactose, and possibly soy. Many of us have naturally lost weight while modifying our diets. I lost 32 lbs. and have taken over 6 months gain 10 pounds back. The surgery you are considering is irreversible; trying a GF diet doesn't require surgery and it can be reversed easily.Skunk Ape wrote:Next month I start a bariatric diet I will have most of my stomach removed next month. After that I will be on an (almost) 100% protein diet. Don't know for sure but I am told that may help my LC. However my main reason for surgury is to loose 100 lbs.
Just expressing some concern... I've met several people who have regretted having the surgery and they end up with worse diarrhea than ever. But once it's done, they cannot change it and must live with it. The diarrhea you have from MC is reversible and you can get your life back.
Gloria
You never know what you can do until you have to do it.
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TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
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I am on a maintenance dose (one a day) of Asacol (originally treated with Prednisone, then Entocort). I was diagnosed with LC in 2004 if I remember correctly.
I also try to watch my diet although I am not as strict with that as I should be. Also, I don't seem to have too many intolerances. Just gluten and soy.
Good Luck but I'd sure think long and hard before submitting myself to the surgery.
Shirley
I also try to watch my diet although I am not as strict with that as I should be. Also, I don't seem to have too many intolerances. Just gluten and soy.
Good Luck but I'd sure think long and hard before submitting myself to the surgery.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
If you look at my other post, you will find I have been on basically a gluten free diet for the past several years and didn't even know it. I didn't loose any weight. The surgery I am having has almost 0 side effects (besides loosing weight). It's not like the bypass or belt. It's not blocking the opening of the stomach nor is it bypassing anything. It is just making my overly stretched out stomach smaller.Gloria wrote:I suppose you've encountered quite a few people who have tried to talk you out of this surgery, so I'll just step in line. If I were you, I would put it off at least until you try changing your diet to eliminate gluten, lactose, and possibly soy. Many of us have naturally lost weight while modifying our diets. I lost 32 lbs. and have taken over 6 months gain 10 pounds back. The surgery you are considering is irreversible; trying a GF diet doesn't require surgery and it can be reversed easily.Skunk Ape wrote:Next month I start a bariatric diet I will have most of my stomach removed next month. After that I will be on an (almost) 100% protein diet. Don't know for sure but I am told that may help my LC. However my main reason for surgury is to loose 100 lbs.
Just expressing some concern... I've met several people who have regretted having the surgery and they end up with worse diarrhea than ever. But once it's done, they cannot change it and must live with it. The diarrhea you have from MC is reversible and you can get your life back.
Gloria