Greetings all,
I’m Jack and would like to introduce myself as I just joined this board today. I was diagnosed with MC two years ago at age 53. Before that I never had any gastro trouble and always prided myself on having a “cast iron” stomach. Well, no more. The onset was very quick and came out of the blue with all the usual suspects – cramping, D, loose-watery stools, and running to the restroom soon after having digested food, etc. Being that I was due for a colonoscopy I scheduled an appointment with one of the tog G Docs in Orlando and told him about my problem. He first scheduled a blood test to determine if I was gluten intolerant – came back negative. Colonoscopy was fine on the surface but the biopsy I requested came back positive for MC. He placed me on a very light dosage of Apriso and that seemed to do the trick after three-weeks and worked for the last 18 months or so until last week.
My flare up started slowly and got progressively worse each day. I have no idea what triggered it but to combat it I’m cutting out alcohol, NSAIDs, limiting my caffeine intake to one cup of coffee in the morning, and am thinking of going back to a gluten free diet (I tried it after I took the gluten test but went off it when the test came back negative). I also started taking Pepto today. We’ll see what happens.
Also, on my last G Doc visit, he wanted to schedule me for another colonoscopy since it had been two years since my last and was going to take another biopsy. I’m not sure what my insurance will think of this but I was wondering if this was normal.
Thanks.
Introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Jack!
Lucky you for getting 18 months of relief with Apriso!
I am amazed that you managed to keep your symptoms under control while continuing to use NSAIDS, as they are totally contraindicated in MC. How often do you use them? They could be the trigger of your disease. If you have drug-induced MC and you caught it early and stop the drug, you might be able to get better with minimal dietary intervention.
With your latest flare, did anything change just prior to the flare? Stressful events? Food poisoning or GI infection? Antibiotic prescription? Any new meds?
I did pretty well on Pepto taking up to 6 tablets a day. Other members don't tolerate Pepto at all. I was taking it while also adhering to a gluten/dairy and mostly soy-free diet.
Your doctor surely tested you for celiac disease with the blood tests, which typically come back negative for most MCers. Mine was negative, although I learned later I had the primary gene for celiac disease (HLADQ2) and I had high levels of antibodies to gluten in my stool (mail away stool testing from Enterolab.com). Blood tests pick up celiac markers after a lot of intestinal damage has accrued in a full-blown case of celiac disease. They do not pick up the early stages of the disease, nor do they account for non-celiac gluten sensitivity, which 90% of MCers seem to have.
Regarding your doctor's recommendation...why would he want to repeat the colonoscopy after only 2 years?!? To make more money from you, I'm guessing? I believe the usual interval after diagnosis of MC is 8-10 years unless you have other risk factors for colon cancer. Save yourself the horror of the prep and just say NO! Incidentally, several members have reported a triggering of MC from their first screening colonoscopy, or a worsening of symptoms after repeat colonoscopy, so the decision should not be made lightly.
Welcome to the group and feel free to ask anything!
Lucky you for getting 18 months of relief with Apriso!
I am amazed that you managed to keep your symptoms under control while continuing to use NSAIDS, as they are totally contraindicated in MC. How often do you use them? They could be the trigger of your disease. If you have drug-induced MC and you caught it early and stop the drug, you might be able to get better with minimal dietary intervention.
With your latest flare, did anything change just prior to the flare? Stressful events? Food poisoning or GI infection? Antibiotic prescription? Any new meds?
I did pretty well on Pepto taking up to 6 tablets a day. Other members don't tolerate Pepto at all. I was taking it while also adhering to a gluten/dairy and mostly soy-free diet.
Your doctor surely tested you for celiac disease with the blood tests, which typically come back negative for most MCers. Mine was negative, although I learned later I had the primary gene for celiac disease (HLADQ2) and I had high levels of antibodies to gluten in my stool (mail away stool testing from Enterolab.com). Blood tests pick up celiac markers after a lot of intestinal damage has accrued in a full-blown case of celiac disease. They do not pick up the early stages of the disease, nor do they account for non-celiac gluten sensitivity, which 90% of MCers seem to have.
Regarding your doctor's recommendation...why would he want to repeat the colonoscopy after only 2 years?!? To make more money from you, I'm guessing? I believe the usual interval after diagnosis of MC is 8-10 years unless you have other risk factors for colon cancer. Save yourself the horror of the prep and just say NO! Incidentally, several members have reported a triggering of MC from their first screening colonoscopy, or a worsening of symptoms after repeat colonoscopy, so the decision should not be made lightly.
Welcome to the group and feel free to ask anything!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi Jack,
Welcome to the group. I know you'll find lots of great info here, as I have. You truly can ask anything here, and someone will have experience or advice to share.
The type of gluten intolerance that most of us have is not detected by a blood test. My recommendation would be to cut out gluten again and stick with it a good while. I was diagnosed in March 2011, and it has only been the last 6-9 months that I have felt good the majority of the time, and have returned to mostly normal bowel activity.
I also had totally cut out dairy, and to the greatest degree possible, soy which are the next things to try if just cutting gluten doesn't do it for you. I have recently been eating some cheese again with no problems, but do not plan to re-introduce dairy beyond that, as the almond milk substitutes work fine for me, and I'm not a big dairy fan anyhow.
NSAIDS aren't good for us, so you are smart to eliminate them.
If you look at the upper right hand corner of the home page, you will see the cover of Tex's book, available on Amazon, which is a great source of information.
Welcome to the group. I know you'll find lots of great info here, as I have. You truly can ask anything here, and someone will have experience or advice to share.
The type of gluten intolerance that most of us have is not detected by a blood test. My recommendation would be to cut out gluten again and stick with it a good while. I was diagnosed in March 2011, and it has only been the last 6-9 months that I have felt good the majority of the time, and have returned to mostly normal bowel activity.
I also had totally cut out dairy, and to the greatest degree possible, soy which are the next things to try if just cutting gluten doesn't do it for you. I have recently been eating some cheese again with no problems, but do not plan to re-introduce dairy beyond that, as the almond milk substitutes work fine for me, and I'm not a big dairy fan anyhow.
NSAIDS aren't good for us, so you are smart to eliminate them.
If you look at the upper right hand corner of the home page, you will see the cover of Tex's book, available on Amazon, which is a great source of information.
Suze
Thanks Zizzle and Maestraz.
On average I was taking Alleve about three times a week, or sometimes more if back pain would flair up. I had no idea about NSAIDS and the relationship to MC until I joined this forum. Hopefully replacing Alleve with some alternative will help.
There were no major changes prior to my fare up. If anything everything has calmed down since we sold our house and bought another in January. That was very stressful but my MC was under control throughout the whole process. I am somewhat disappointed in my doctor. I had the same thought – why another colonoscopy after 2 years? My first thought was easy $$$$$ for him. Before I was diagnosed with MC he told me my next colonoscopy would be in 8 years. I know on my next appointment he is going to push me towards it even more since I’ll advise him of my flare up. I’m going to try the diet change, pepto and eliminate NSAIDS. Sure hope it helps. We’ll see.
I have placed an order for Tex’s book. Thanks for pointing me towards it.
On average I was taking Alleve about three times a week, or sometimes more if back pain would flair up. I had no idea about NSAIDS and the relationship to MC until I joined this forum. Hopefully replacing Alleve with some alternative will help.
There were no major changes prior to my fare up. If anything everything has calmed down since we sold our house and bought another in January. That was very stressful but my MC was under control throughout the whole process. I am somewhat disappointed in my doctor. I had the same thought – why another colonoscopy after 2 years? My first thought was easy $$$$$ for him. Before I was diagnosed with MC he told me my next colonoscopy would be in 8 years. I know on my next appointment he is going to push me towards it even more since I’ll advise him of my flare up. I’m going to try the diet change, pepto and eliminate NSAIDS. Sure hope it helps. We’ll see.
I have placed an order for Tex’s book. Thanks for pointing me towards it.
Hi Jack,
Welcome aboard. I'm sorry to hear that you're suffering a relapse of symptoms, but I have a hunch that Zizzle is right on target with her observation that it may be due to the use of NSAIDs. There is a possibility that avoiding NSAIDs may allow the Apriso to regain control of your symptoms, but remember that in the long run, drugs can only mask the symptoms of disease.
The safest and most effective way to control the symptoms of MC is by means of diet changes, as Zizzle and Suze suggested. By avoiding the foods to which our immune system is producing antibodies, we can prevent the inflammation that is the cause of the disease in the first place. And they are quite correct of course, that the type of gluten sensitivity that is associated with this disease is virtually never detected by the classic celiac blood tests, so they are worthless for our purposes. All but a few of us are just as sensitive to gluten as the average celiac, even though we will always receive a negative result on those blood tests.
The only tests that will reliably and accurately detect the common food sensitivities that are associated with MC are IgA-based stool tests offered by EnteroLab, in Dallas TX.
I also agree that your doctor appears to be trying to make some easy money at your expense, with his request for a followup colonoscopy exam so soon after the first. This seems to be a rather popular tactic used by many GI docs these days, especially when their treatment recommendations aren't working. They are hoping to learn something about MC at the patient's expense. They think that they will discover something that was overlooked on the first scoping, but that never happens. Instead, the patient has to suffer through the misery of the prep process and the exam, with an almost nonexistent possibility of any benefits in return. And besides it being a very intrusive procedure, a colonoscopy is not without serious risks. Not only can the caustic solution used for cleanout trigger a flare, as Zizzle pointed out, but a small but significant risk of a perforation is always present, and if that should happen then emergency surgery is necessary in order to save the patient's life.
The only one who benefits from an unnecessary procedure is the doctor.
They love the procedure because it pays well, and insurance companies always seem to be willing to go along with it. If insurance companies ever catch on to what's going on, and balk at paying for those premature followup colonoscopies, you can bet that GI docs won't be recommending them so often.
Again, welcome to the group, and please feel free to ask anything.
Tex
Welcome aboard. I'm sorry to hear that you're suffering a relapse of symptoms, but I have a hunch that Zizzle is right on target with her observation that it may be due to the use of NSAIDs. There is a possibility that avoiding NSAIDs may allow the Apriso to regain control of your symptoms, but remember that in the long run, drugs can only mask the symptoms of disease.
The safest and most effective way to control the symptoms of MC is by means of diet changes, as Zizzle and Suze suggested. By avoiding the foods to which our immune system is producing antibodies, we can prevent the inflammation that is the cause of the disease in the first place. And they are quite correct of course, that the type of gluten sensitivity that is associated with this disease is virtually never detected by the classic celiac blood tests, so they are worthless for our purposes. All but a few of us are just as sensitive to gluten as the average celiac, even though we will always receive a negative result on those blood tests.
The only tests that will reliably and accurately detect the common food sensitivities that are associated with MC are IgA-based stool tests offered by EnteroLab, in Dallas TX.
I also agree that your doctor appears to be trying to make some easy money at your expense, with his request for a followup colonoscopy exam so soon after the first. This seems to be a rather popular tactic used by many GI docs these days, especially when their treatment recommendations aren't working. They are hoping to learn something about MC at the patient's expense. They think that they will discover something that was overlooked on the first scoping, but that never happens. Instead, the patient has to suffer through the misery of the prep process and the exam, with an almost nonexistent possibility of any benefits in return. And besides it being a very intrusive procedure, a colonoscopy is not without serious risks. Not only can the caustic solution used for cleanout trigger a flare, as Zizzle pointed out, but a small but significant risk of a perforation is always present, and if that should happen then emergency surgery is necessary in order to save the patient's life.
The only one who benefits from an unnecessary procedure is the doctor.
They love the procedure because it pays well, and insurance companies always seem to be willing to go along with it. If insurance companies ever catch on to what's going on, and balk at paying for those premature followup colonoscopies, you can bet that GI docs won't be recommending them so often.Again, welcome to the group, 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.
Welcome to our family Jack. You have gotten great advise from all who have answered so far. Sorry you are flaring, but it seems that most of us will relapse unless we take the foods out that are causing the inflammation. My symptoms came on very suddenly also and i was also close to 50, so had the procedure done quickly. Since, i have gotten rid of gluten, dairy , and soy. You also might want to consider temporarily taking out RAW fruits and veggies, and beans since they are very hard to digest while our guts are inflamed. You can add them back in slowly when you have this under control. It helps A LOT!
If you want to know for sure what you are reacting to, check out Enterolab's web site. If you can afford the tests, it saves a lot of guesswork.
Good luck
Leah
If you want to know for sure what you are reacting to, check out Enterolab's web site. If you can afford the tests, it saves a lot of guesswork.
Good luck
Leah
Re: Introduction
Did you take apriso for 18 months? Also who is your doctor?Jack wrote:Greetings all,
I’m Jack and would like to introduce myself as I just joined this board today. I was diagnosed with MC two years ago at age 53. Before that I never had any gastro trouble and always prided myself on having a “cast iron” stomach. Well, no more. The onset was very quick and came out of the blue with all the usual suspects – cramping, D, loose-watery stools, and running to the restroom soon after having digested food, etc. Being that I was due for a colonoscopy I scheduled an appointment with one of the tog G Docs in Orlando and told him about my problem. He first scheduled a blood test to determine if I was gluten intolerant – came back negative. Colonoscopy was fine on the surface but the biopsy I requested came back positive for MC. He placed me on a very light dosage of Apriso and that seemed to do the trick after three-weeks and worked for the last 18 months or so until last week.
My flare up started slowly and got progressively worse each day. I have no idea what triggered it but to combat it I’m cutting out alcohol, NSAIDs, limiting my caffeine intake to one cup of coffee in the morning, and am thinking of going back to a gluten free diet (I tried it after I took the gluten test but went off it when the test came back negative). I also started taking Pepto today. We’ll see what happens.
Also, on my last G Doc visit, he wanted to schedule me for another colonoscopy since it had been two years since my last and was going to take another biopsy. I’m not sure what my insurance will think of this but I was wondering if this was normal.
Thanks.
Thank you all for the information. I believe I am going to have to have an IgA-based stool test. Trying to figure out what the problem is can be such a daunting task. I am immediately going on a gluten free diet though, especially after last night’s dinner. I had gluten free tortellini but we mixed it with a marinara type vodka sauce, and four hours later while sleeping I woke up and had to make a run for it. Went back to bed and slept fine but when I woke up I was still emitting what was left. This morning I am going to attempt to eat yogurt with peaches and bananas. We’ll see what happens. I know some of you all cut out dairy too but as y’all state, we have to experiment and see what works and what doesn’t.
I am on 0.375 grams of Apriso for the past 14 months, which my doctor told me is a very minimal dose. I am not scheduled to go back to see him until August but am debating on whether to call him and set up an appointment so he can prescribe a larger dose (or something different), or, try a different diet for 3-4 weeks and see what happens.
I am on 0.375 grams of Apriso for the past 14 months, which my doctor told me is a very minimal dose. I am not scheduled to go back to see him until August but am debating on whether to call him and set up an appointment so he can prescribe a larger dose (or something different), or, try a different diet for 3-4 weeks and see what happens.
Jack, I suspect your reaction to your meal was either the dairy in the cheese in the tortellini and the tomato/dairy/spices in the vodka sauce. You will find that if you keep your meals simple and not processed ( not from a package or jar), you will feel better. We all know how daunting this is. I know it seems that seeing what you CAN EAT by waiting for a reaction is the way to go, but really the opposite is true. Taking out most of the things that MIGHT BE giving you problems is the way to do it. THEN WHEN YOU FEEL BETTER you can test each thing back in. Otherwise, you will be reacting to things constantly without really knowing what it is you are reacting to.
Good luck
Leah
Good luck
Leah
Hi Jack, glad you are here. Sorry for the reason though, because this is not a simple disease. Nope, yogurt and ALL dairy products are out for you for awhile. It doesn't mean that you can NEVER go back to them but while you are in a flare and until you figure out what you react to, dairy is one of the worst things for inflammation.
I found that cold drinks caused spasms and then a short time later, diarrhea when I was at my worst. I am now able to drink iced tea, but I don't push it. I was looking at your post about Planet Smoothies. We do not have them in Michigan where I am, so I cannot comment. However, I did go to a seminar last week on "Food, Mood, and Cognition. The speaker was a PhD biochemist and talked about the implications of food on our brain health. She talked about Lectin, which is a hormone released to tell you when you are full. It does not get released when you drink a smoothie because your brain doesn't recognize drinking--only chewing. She explained that if you drink a meal, you don't have the feeling of being sated. I think also that when there are protein powders in smoothies you have to make very sure that there is no gluten in them to thicken them.
I know (because I felt this way at first) that it must seem like everybody is telling you to stay away from most of the things you have always eaten and it soon will be that you are food-free, but there really are things you are able to eat--and you will be able to add foods back in slowly. It will NOT always be this bad. I lived on a lot of broth for a long time and chicken (plain) with well-cooked vegetables. I still eat a lot of Canadian bacon for breakfast with fruit and (now that I can eat some) homemade yogurt. I am lucky because I have the time to cook for myself. If you cannot, there are still many things you can do that are simple. Just don't eat any processed foods--that is the first rule of thumb. I have found that most G-F foods have things I react to, to substitute for the gluten.
You will figure it out soon and it won't be so bad. Just keep reading.
Take care---
I found that cold drinks caused spasms and then a short time later, diarrhea when I was at my worst. I am now able to drink iced tea, but I don't push it. I was looking at your post about Planet Smoothies. We do not have them in Michigan where I am, so I cannot comment. However, I did go to a seminar last week on "Food, Mood, and Cognition. The speaker was a PhD biochemist and talked about the implications of food on our brain health. She talked about Lectin, which is a hormone released to tell you when you are full. It does not get released when you drink a smoothie because your brain doesn't recognize drinking--only chewing. She explained that if you drink a meal, you don't have the feeling of being sated. I think also that when there are protein powders in smoothies you have to make very sure that there is no gluten in them to thicken them.
I know (because I felt this way at first) that it must seem like everybody is telling you to stay away from most of the things you have always eaten and it soon will be that you are food-free, but there really are things you are able to eat--and you will be able to add foods back in slowly. It will NOT always be this bad. I lived on a lot of broth for a long time and chicken (plain) with well-cooked vegetables. I still eat a lot of Canadian bacon for breakfast with fruit and (now that I can eat some) homemade yogurt. I am lucky because I have the time to cook for myself. If you cannot, there are still many things you can do that are simple. Just don't eat any processed foods--that is the first rule of thumb. I have found that most G-F foods have things I react to, to substitute for the gluten.
You will figure it out soon and it won't be so bad. Just keep reading.
Take care---
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Thanks Jane. I’m sure I’m not telling y’all anything you don’t know, but right now I feel like I’m lost in a colitis maze trying to find the right path to relief. I swear once I find the right path I will never stray, even if it means giving up my favorite foods for life. I don’t know what to do about the Apriso though. I’m still taking it but it obviously is not working. Maybe now that I’ve quick taking Alleve and when I find out what foods are causing the problem, it will kick back in.
I also downloaded Tex’s book on my Kindle today and started reading it at lunch (although all I had was a green tea). I wish I would have been told by my GI about how bad NSAIDs were for MC. I first learned about this yesterday on this board and then found out it’s all over the internet. Hoping that this is part of the reason for my flare up. Just goes to show we need to be 100% involved in our treatment and not totally rely on our GIs.
I also downloaded Tex’s book on my Kindle today and started reading it at lunch (although all I had was a green tea). I wish I would have been told by my GI about how bad NSAIDs were for MC. I first learned about this yesterday on this board and then found out it’s all over the internet. Hoping that this is part of the reason for my flare up. Just goes to show we need to be 100% involved in our treatment and not totally rely on our GIs.
Diagnosed with MC in June of 2011. Prescribed 0.375 grams of Apriso. Experienced remission within 3 weeks while still eating whatever I wanted. Flare up in May of 2013. Digesting all the information on this board and developing a food strategy.
Jack,
I have a serous back problem, and am post 2 back surgeries. I was taking hydro codeine (vicoden) for the pain, although I limited myself severely. I was on a whole lot of drugs because I have been sick for 10 years with a "lupus like" illness, FMS, my back etc., etc.
I say WAS because I have weaned off most of the meds. However, I now have a horrible illness that might have been caused by them, and was, at the very least, made a lot worse.
Doing without the vicoden is horrible for me. I get into really bad pain, and find it difficult to move at all. I got a puppy so I would walk when my inclination is not to move. Although not lately, I usually do a lot of exercise in the pool. Lately I haven't, and must get back to it.
However, taking more pills that will cause other side effects so I need more pills to deal with the side effects and so forth, is just making me sicker.
Just BTW - my diet is very limited.
I have a serous back problem, and am post 2 back surgeries. I was taking hydro codeine (vicoden) for the pain, although I limited myself severely. I was on a whole lot of drugs because I have been sick for 10 years with a "lupus like" illness, FMS, my back etc., etc.
I say WAS because I have weaned off most of the meds. However, I now have a horrible illness that might have been caused by them, and was, at the very least, made a lot worse.
Doing without the vicoden is horrible for me. I get into really bad pain, and find it difficult to move at all. I got a puppy so I would walk when my inclination is not to move. Although not lately, I usually do a lot of exercise in the pool. Lately I haven't, and must get back to it.
However, taking more pills that will cause other side effects so I need more pills to deal with the side effects and so forth, is just making me sicker.
Just BTW - my diet is very limited.
I hate to add this into the mix Jack, but fruit ( and especially melon) is usually pretty horrible when we are flaring. You don't know much about me, but lets just say that my MC is somewhat controlled ( I go once a day) but the other day, I couldn't resist eating a perfectly delicious apricot. Just one small one. ....BAM, in the bathroom within 1 hour! So frustrating.
Leah
Leah
Welcome Jack!
I'm the new kid on the block too only having been diagnosed with CC 3 weeks ago and then joining the board about 2 weeks ago. I don't have a lot of wisdom to offer yet, but I am taking other's advice. For example, I've just sent the money off to Enterolab for my kit to check for gluten intolerance and am just now attempting to become Gluten Free in my diet. There's a lot knowledge, hope and love in this group. Use it freely.
And please let us know how you're doing. :)
Best, Shar
I'm the new kid on the block too only having been diagnosed with CC 3 weeks ago and then joining the board about 2 weeks ago. I don't have a lot of wisdom to offer yet, but I am taking other's advice. For example, I've just sent the money off to Enterolab for my kit to check for gluten intolerance and am just now attempting to become Gluten Free in my diet. There's a lot knowledge, hope and love in this group. Use it freely.
And please let us know how you're doing. :)
Best, Shar