I am new!!
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Hi Tam,
Welcome to the group. Not all of us have used Entocort. Many of us choose to control our symptoms by diet changes alone.
For those who use Entocort (budesonide), in general, it seems to be about 65–70 % effective, and it is the most effective, reasonably-safe drug available for treating MC (off-label — there are no drugs labeled to treat MC). For some, it has no effect, and for a few others, it causes neurological symptoms that are intolerable, so the drug must be discontinued, but all in all, it's generally an effective choice for most patients who choose to use a drug to control their symptoms. It's far safer than using prednisone, for example.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Not all of us have used Entocort. Many of us choose to control our symptoms by diet changes alone.
For those who use Entocort (budesonide), in general, it seems to be about 65–70 % effective, and it is the most effective, reasonably-safe drug available for treating MC (off-label — there are no drugs labeled to treat MC). For some, it has no effect, and for a few others, it causes neurological symptoms that are intolerable, so the drug must be discontinued, but all in all, it's generally an effective choice for most patients who choose to use a drug to control their symptoms. It's far safer than using prednisone, for example.
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.
Thank you, I was just officially diagnosed this passed week. They tried me on Lialda and my symptoms instantly got worse. Today is my first day of endocort but it makes me nervous. I'm interested to know what kind of diet has been successful for any of my fellow sufferers. Thank you for the feedback 
Tam
Welcome Tam,
Most of us have to eliminate gluten right away, followed by casein (the protein in dairy products). Many of us are also sensitive to soy, and some to eggs. Have you tried any trial diet eliminations yet?
Most of us have to eliminate gluten right away, followed by casein (the protein in dairy products). Many of us are also sensitive to soy, and some to eggs. Have you tried any trial diet eliminations yet?
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 Zizzle,
No not really, when they weren't sure yet of my diagnosis I tried to BRAT diet. Didn't seem to make any difference. My question on the diet thing is how does ones body all of a sudden become intolerant to certain food? I am 49 years old and this started about a 6 weeks ago, with no relief since...it just seems odd to me...
No not really, when they weren't sure yet of my diagnosis I tried to BRAT diet. Didn't seem to make any difference. My question on the diet thing is how does ones body all of a sudden become intolerant to certain food? I am 49 years old and this started about a 6 weeks ago, with no relief since...it just seems odd to me...
Tam
Pepto bismal
I have not tried Pepto, just immodium. Does Pepto Bismal seem to help more for anyone?
Tam
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christinakay
- Adélie Penguin
- Posts: 68
- Joined: Tue Dec 11, 2012 2:40 pm
- Location: waterville,oh
Welcome Tam
I'm sure that Tex could answer this better then I, but when the gene that disposes of us MC is triggered, so are the food intolerances. Almost all of us are gluten free. Most dairy free. Some of us soy free. and a smaller number are egg free. Those are the big four inflamatory culprits. If you want to know for sure and can afford it, there is a lab called Enterolab ( look up their website) that you send a stool sample to.
I started Entocort a month after Dx. It worked like a charm for me and quickly, but if you don't address your diet, you will likely relapse after weaning off of it. It's not a cure. I was on 9 mg for a month. Went to 6mg for a couple of months and then slowly weaned down as I got a bit constipated. The whole process took about 6 months. DURING that time, I took out gluten, dairy, and soy. I also stayed away from the "irritant foods" like RAW fruits and veggies, beans and legumes, citrus and tomato, coffee and black Tea. Fiber is too hard on an inflamed gut. It's like putting sandpaper to an open wound.
I am a little over a year now and I am pretty much in remission. I have added many of the irritants back in successfully, but will always stay away from gluten and dairy.
This process takes time, but healing is your main goal right now.
Good luck and keep us posted.
Leah
I'm sure that Tex could answer this better then I, but when the gene that disposes of us MC is triggered, so are the food intolerances. Almost all of us are gluten free. Most dairy free. Some of us soy free. and a smaller number are egg free. Those are the big four inflamatory culprits. If you want to know for sure and can afford it, there is a lab called Enterolab ( look up their website) that you send a stool sample to.
I started Entocort a month after Dx. It worked like a charm for me and quickly, but if you don't address your diet, you will likely relapse after weaning off of it. It's not a cure. I was on 9 mg for a month. Went to 6mg for a couple of months and then slowly weaned down as I got a bit constipated. The whole process took about 6 months. DURING that time, I took out gluten, dairy, and soy. I also stayed away from the "irritant foods" like RAW fruits and veggies, beans and legumes, citrus and tomato, coffee and black Tea. Fiber is too hard on an inflamed gut. It's like putting sandpaper to an open wound.
I am a little over a year now and I am pretty much in remission. I have added many of the irritants back in successfully, but will always stay away from gluten and dairy.
This process takes time, but healing is your main goal right now.
Good luck and keep us posted.
Leah
Tam- I am off of Entocort now but I did well on it. It stopped the symptoms and I believe it started me healing. What it actually did was help me to function so I could work and it bought me time to figure out my diet. By the time I was ready to wean off of it, I was GF, SF, DF and I learned I reacted to eggs once I was off of Entocort.
Entocort will reduce the inflammation but only the diet changes will help you to heal and maintain your health. If you don't eliminate the food you are sensitive to you will flare again once you stop taking the Entocort. I took Entocort for 4 1/2 months but once I was off of it, I was able to maintain without it. Not that its always been smooth but with the help of people here and test results (Enterolab and MRT for me), and systematic food challenges I've been able to develop a diet that works for me.
Carol
Entocort will reduce the inflammation but only the diet changes will help you to heal and maintain your health. If you don't eliminate the food you are sensitive to you will flare again once you stop taking the Entocort. I took Entocort for 4 1/2 months but once I was off of it, I was able to maintain without it. Not that its always been smooth but with the help of people here and test results (Enterolab and MRT for me), and systematic food challenges I've been able to develop a diet that works for me.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Welcome Tam, I was diagnosed three months ago, went GF, DF, SF, and EF almost right away. I didn't take Entocort, but would take Pepto Bismol if things got pretty rough. I started feeling much better within a couple of weeks and except for occasional times when I try something new in my diet, I feel just fine. It was a big adjustment changing what I eat, and I went through a mourning period at first, but it sure made a difference.
Hope you get to feeling better soon.
Jean
Hope you get to feeling better soon.
Jean
Hi Tam!
Starting Entocort today.
Tomorrow will be week one GF, DF, SF, fruits and veggies free (with the exception of a banana). Low fat, no more pastries/chocolate. This is all new to me, this way of living. My LC has not improved in one week (I didn't expect it to) but I can say that I have more energy!
Starting Entocort today.
Tomorrow will be week one GF, DF, SF, fruits and veggies free (with the exception of a banana). Low fat, no more pastries/chocolate. This is all new to me, this way of living. My LC has not improved in one week (I didn't expect it to) but I can say that I have more energy!
Joanne
"A Journey Of A Thousand Miles Must Begin With A Single Step"
"A Journey Of A Thousand Miles Must Begin With A Single Step"