I have been on the forum since November, but am now just posting for the first time. So, hello all!
I was diagnosed via scope with LC after six weeks of D, abdominal pain, and terrible weight loss. I think I have had LC for a long time, but it "came to a head" after a long course of the NSAID meloxicam that my ortho gave me for inflammation from a suspected torn meniscus. Looking back now, my joint pain always coincided with minor abdominal flare-ups and hence indicate comorbid arthralgia.
My GI has been mediocre, at best. While he has been helpful, his knowledge of MC is limited. He first put me on a course of flagyl that seemed to stop the D, but upon termination of the course it came back. After, he put me on a second course and the D stopped, but immediately returned upon the end of the course. It was at this point he ordered the scope and I got the ultimate diagnosis of LC. He prescribed me a 6wk course of entocort. This helped to a good point and by the end of the course, I was capable of soft-serve BMs. This form of BM has been the norm for about 8-10 weeks now.
Due to a recent flare-up, he called in a second course of Entocort (in third week now). I am somewhat concerned because it simply is not working: the abdominal cramps are quite bad, but fortunately no D. Is this kind of thing common? As in, the steroids just don't work in their second course? My wife is fairly concerned since I am not responding to the steroids. (To my luck, she is a pathologist!)
I've been trying to get a follow-up appt with my GI, but he is booked for the foreseeable future. My goal is for him to order the enterlab testing so that I can determine my sensitivities. Can anyone here recommend an MC/LC-knowledgeable GI here in Dallas?
On an unrelated note: Are there any serious runners on the board? I've pretty much settled that I will have to go gluten-free, and I would love to pick your brain(s) on how an athlete with MC could do this and still perform at a respectable level.
Many thanks to you all!
-Jon
New Here. Any Runners?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jon,
Welcome to the discussion board. Your experiences with medications are rather typical. Without the necessary diet changes, virtually everyone relapses after the meds are discontinued. And your perception about Entocort is correct — research shows that when treatment with budesonide is discontinued and then restarted again, each cycle results in a progressively diminished efficacy. IOW, each re-treatment typically takes either a stronger dose, or a longer period of time to obtain a satisfactory response, because the drug is less effective with each reuse.
One of the possible side effects of budesonide is constipation, and that is probably the source of most digestive system cramps when using the drug.
Unfortunately, the only GI specialist in the Dallas area that I'm aware of who actually understands MC is Dr. Fine (the founder of EnteroLab), but I don't believe that he accepts appointments anymore. I'm not sure if the lab is willing or able to make recommendations, but you might try calling, to see if they can recommend a specialist, or at least recommend one who advocates their testing methods.
Dr. Dahlman is in the Dallas area, and he talks a good treatment program, but we have a couple of members who used his services, and they were unable to derive any significant benefits from his (presumably relatively expensive) treatment program.
You can search the archives to find many posts by previous runners. We have at least a couple of members who regularly participate in marathons, but none who are currently posting (most people stop posting, after they get their life back). Search for posts by moremuscle and jillian357, for example. There are others who don't come to mind at the moment.]
If the system will not allow you to search the archives, you may need to write additional posts before it will allow you to use the search function. Unfortunately, this restriction is necessary, in order to minimize the chances of someone joining the board just so they can "harvest" contact information to sell to spammers.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. Your experiences with medications are rather typical. Without the necessary diet changes, virtually everyone relapses after the meds are discontinued. And your perception about Entocort is correct — research shows that when treatment with budesonide is discontinued and then restarted again, each cycle results in a progressively diminished efficacy. IOW, each re-treatment typically takes either a stronger dose, or a longer period of time to obtain a satisfactory response, because the drug is less effective with each reuse.
One of the possible side effects of budesonide is constipation, and that is probably the source of most digestive system cramps when using the drug.
Unfortunately, the only GI specialist in the Dallas area that I'm aware of who actually understands MC is Dr. Fine (the founder of EnteroLab), but I don't believe that he accepts appointments anymore. I'm not sure if the lab is willing or able to make recommendations, but you might try calling, to see if they can recommend a specialist, or at least recommend one who advocates their testing methods.
Dr. Dahlman is in the Dallas area, and he talks a good treatment program, but we have a couple of members who used his services, and they were unable to derive any significant benefits from his (presumably relatively expensive) treatment program.
You can search the archives to find many posts by previous runners. We have at least a couple of members who regularly participate in marathons, but none who are currently posting (most people stop posting, after they get their life back). Search for posts by moremuscle and jillian357, for example. There are others who don't come to mind at the moment.]
If the system will not allow you to search the archives, you may need to write additional posts before it will allow you to use the search function. Unfortunately, this restriction is necessary, in order to minimize the chances of someone joining the board just so they can "harvest" contact information to sell to spammers.
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.
Welcome Jon.
As Tex said, for Entocort to work, it seems that not only do you have to change your diet at the same time, but the minimum amount of time on it seems to be around 4 months.
I am a personal trainer/nutrition specialist and let me say that you can certainly keep running ( if you can without needing a bathroom) on a gluten free diet. NOBODY NEEDS WHEAT. In fact, we don't need grains, but if you feel as if you do, there is still rice and corn to give you the starchy carbs you are looking for. However, many of us find that we need to drop all grains. In that case, potatoes and sweet potatoes do nicely.
When I was Dx, I went on Entocort AND changed my diet drastically. What works best is a high protein/low fiber, gluten, dairy, and soy free diet. FOR NOW. I took the full dose the first month. It worked very quickly, so I lowered the dose to 6mg. for another month. The third month I was able to drop to 3mg. I stayed there for 2 months.During the last two months, I SLOWLY weaned off of it. it's very important to wean slowly. I'm sure others will chime in on this one.
The Enterolab test is a good idea and you don't need a doctor to order them.If I was in your shoes ( which I was), I'd drop gluten NOW. DAIRY ALSO. Beans and legumes , out .RAW FRUITS AND VEGGIES TOO. You sees, right now, you have a lot of inflammation going on and all that fiber is keeping your gut from healing. It's like rubbing sandpaper on an open wound. Later, when you feel better, you can test the fruits beans, and veggies back in. I have been able to add many foods back in. I am two years into this and feeling pretty great. I remain G,D,and S free, but can eat all vegetables ( raw and cooked), black and white beans, wine and alcohol, dark soy free chocolate, and even spicy food. So the good news is if you do what needs to be done now, your future can look pretty bright.
Hope that helped. If you haven't already bought Tex's book, you might want to do that. Just click on the picture of it in the upper right hand corner and it will take you to Amazon.
We are all here to help. Ask anything and keep us posted.
Good luck!
Leah
As Tex said, for Entocort to work, it seems that not only do you have to change your diet at the same time, but the minimum amount of time on it seems to be around 4 months.
I am a personal trainer/nutrition specialist and let me say that you can certainly keep running ( if you can without needing a bathroom) on a gluten free diet. NOBODY NEEDS WHEAT. In fact, we don't need grains, but if you feel as if you do, there is still rice and corn to give you the starchy carbs you are looking for. However, many of us find that we need to drop all grains. In that case, potatoes and sweet potatoes do nicely.
When I was Dx, I went on Entocort AND changed my diet drastically. What works best is a high protein/low fiber, gluten, dairy, and soy free diet. FOR NOW. I took the full dose the first month. It worked very quickly, so I lowered the dose to 6mg. for another month. The third month I was able to drop to 3mg. I stayed there for 2 months.During the last two months, I SLOWLY weaned off of it. it's very important to wean slowly. I'm sure others will chime in on this one.
The Enterolab test is a good idea and you don't need a doctor to order them.If I was in your shoes ( which I was), I'd drop gluten NOW. DAIRY ALSO. Beans and legumes , out .RAW FRUITS AND VEGGIES TOO. You sees, right now, you have a lot of inflammation going on and all that fiber is keeping your gut from healing. It's like rubbing sandpaper on an open wound. Later, when you feel better, you can test the fruits beans, and veggies back in. I have been able to add many foods back in. I am two years into this and feeling pretty great. I remain G,D,and S free, but can eat all vegetables ( raw and cooked), black and white beans, wine and alcohol, dark soy free chocolate, and even spicy food. So the good news is if you do what needs to be done now, your future can look pretty bright.
Hope that helped. If you haven't already bought Tex's book, you might want to do that. Just click on the picture of it in the upper right hand corner and it will take you to Amazon.
We are all here to help. Ask anything and keep us posted.
Good luck!
Leah
Hi, Jon,
Oh, I remember those early days. First, yes, I *was* a runner, prior to getting sick, but I'm really hoping to get back! I'm slowly but consistently doing better.
I am still on the full dose of entocort a year and a half later. I also take immodium daily. I've eliminated a great deal, and think it's led to much healing. (I rarely have intestinal pain anymore) I'm sure I'm missing a trigger, but I can't figure it out right yet. (I'm also sensitive to environmental stuff, which is hugely confusing.)
Long story short, I used to read everyone's posts about how well they were doing and think, "Wow, what's wrong with me???" Then one day I read a post by one of the members named Gabes, and in it she gave a sort of history of her past four years. Then I realized I was still in the baby steps.
One piece that was huge to me is I can't tolerate fructose. Fructose is in many unexpected things (pears, apples, brocoli). I also can't do garlic, and lately, am staying away from my favorite thing ever--coffee!
Anyway, I have much less info/wisdom than others, but just wanted to say, don't put a time table on this process. We're all different. :) I've found I can also set myself back by thinking I've healed more than I have and try to push myself too much physically.
Welcome, and may God bless your journey to healing. :)
Oh, I remember those early days. First, yes, I *was* a runner, prior to getting sick, but I'm really hoping to get back! I'm slowly but consistently doing better.
I am still on the full dose of entocort a year and a half later. I also take immodium daily. I've eliminated a great deal, and think it's led to much healing. (I rarely have intestinal pain anymore) I'm sure I'm missing a trigger, but I can't figure it out right yet. (I'm also sensitive to environmental stuff, which is hugely confusing.)
Long story short, I used to read everyone's posts about how well they were doing and think, "Wow, what's wrong with me???" Then one day I read a post by one of the members named Gabes, and in it she gave a sort of history of her past four years. Then I realized I was still in the baby steps.
One piece that was huge to me is I can't tolerate fructose. Fructose is in many unexpected things (pears, apples, brocoli). I also can't do garlic, and lately, am staying away from my favorite thing ever--coffee!
Anyway, I have much less info/wisdom than others, but just wanted to say, don't put a time table on this process. We're all different. :) I've found I can also set myself back by thinking I've healed more than I have and try to push myself too much physically.
Welcome, and may God bless your journey to healing. :)
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
As Jennifer has mentioned, the timing for healing can vary.
For some, if it is medication induced MC, stopping the offending medication, symptoms will stop and healing can happen quite quick.
For others, with multiple intolerances, it can take a few months or it can take a couple of years to eliminate triggers and get good quality healing.
Which can be interupted by mast cell/histamine issues.
And there are a few, that have ongoing issues for years.
There is no quick fix, or a magic potion that resolves the issues.
For me, mc is not the major medical issue affecting my wellness.
Although in my opinion once mc was active, the other issues came to the surface and made themselves known.
Good luck for your mc journey
For some, if it is medication induced MC, stopping the offending medication, symptoms will stop and healing can happen quite quick.
For others, with multiple intolerances, it can take a few months or it can take a couple of years to eliminate triggers and get good quality healing.
Which can be interupted by mast cell/histamine issues.
And there are a few, that have ongoing issues for years.
There is no quick fix, or a magic potion that resolves the issues.
For me, mc is not the major medical issue affecting my wellness.
Although in my opinion once mc was active, the other issues came to the surface and made themselves known.
Good luck for your mc journey
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama