I'm sick of this!!!! I tried to drop my entocort from 3 to 2 - which brought all my symptoms back - I'm just tired of trying to figure out what is setting it off. I've stopped Gluten (and I was a true bread and cookie kind of gal) - but now I am thinking that a lot of my favorites are also causing problems - things like watermelon (I LOVE IT), tomato sauce, spinach, strawberries.... I am a picky eater to begin with - but now I feel like I should just stop eating (seriously - but not seriously).
My husband doesn't get why I need to know where the next bathroom stop is, or why I don't want to go overnight on our boat (pump toilets) or why I'm always moaning from my stomach cramps and bloating....
On the positive side, I found a totally GF store in the next town. The owner definitely felt my pain... It is nice to have others who understand what you are going through.
I guess I need to start a journal so that I can figure out what is setting it off besides gluten.....
Thanks for listening....
I need a hug from the mc support group!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
You may be right about the watermelon. Many of us, (including me), had to stop eating it until our intestines healed. It caused very strong reactions for me. 
Also, many of us have to avoid tomatoes, (and many other fruits and vegetables, until we have healed.
If you're not avoiding all dairy products, and all soy products, you may have to cut those out, also, before you will be able to successfully lower your dosage of Entocort. Many of us are in the same boat on that issue.
Also, it takes time for the gut to heal. I don't recall how long you have been taking Entocort, but very few of us are able to lower the dosage sooner than about 6 months, and most find that a year is a more typical length of time. Virtually all GI docs have no good working knowledge of how long it takes the intestines to heal the damage caused by MC.
Has your husband ever had to experience the "joys" of a "cleanout prep" for a colonoscopy? If he has, you can tell him that he can multiply that by about a factor of 10, and add a lot of pain, and constant fatigue, and that's the way you feel, most of the time. Maybe he'll understand it that way.
I hope things start going your way, soon.
Tex
Also, many of us have to avoid tomatoes, (and many other fruits and vegetables, until we have healed.If you're not avoiding all dairy products, and all soy products, you may have to cut those out, also, before you will be able to successfully lower your dosage of Entocort. Many of us are in the same boat on that issue.
Also, it takes time for the gut to heal. I don't recall how long you have been taking Entocort, but very few of us are able to lower the dosage sooner than about 6 months, and most find that a year is a more typical length of time. Virtually all GI docs have no good working knowledge of how long it takes the intestines to heal the damage caused by MC.
Has your husband ever had to experience the "joys" of a "cleanout prep" for a colonoscopy? If he has, you can tell him that he can multiply that by about a factor of 10, and add a lot of pain, and constant fatigue, and that's the way you feel, most of the time. Maybe he'll understand it that way.
I hope things start going your way, soon.
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.
Capenancy,
I'm so sorry to read that you're unable to reduce your Entocort dosage. As Tex said, it's very likely that you are intolerant to other foods besides gluten. Eliminating gluten didn't change my symptoms at all because I had so many other intolerances.
As Tex mentioned, the most common additional intolerances are dairy and soy. You could try eliminating them in addition to gluten and see if you're able to reduce the Entocort. It's also helpful to read what foods have caused others problems on this board. I believe I posted links to these in another thread.
Many of us have found it helpful to order Enterolab stool tests which detect antibodies to five of the most common offensive foods. You can find more information on the testing here: http://www.Enterolab.com.
Gloria
I'm so sorry to read that you're unable to reduce your Entocort dosage. As Tex said, it's very likely that you are intolerant to other foods besides gluten. Eliminating gluten didn't change my symptoms at all because I had so many other intolerances.
As Tex mentioned, the most common additional intolerances are dairy and soy. You could try eliminating them in addition to gluten and see if you're able to reduce the Entocort. It's also helpful to read what foods have caused others problems on this board. I believe I posted links to these in another thread.
Many of us have found it helpful to order Enterolab stool tests which detect antibodies to five of the most common offensive foods. You can find more information on the testing here: http://www.Enterolab.com.
Gloria
You never know what you can do until you have to do it.
Hi Capenancy!
Here's your group hug:
And this is from me:
I agree that other intolerances may be the culprit. Is there any way you could avoid gluten, all dairy, and soy for a week or two? I would guess you would see at least a lessening of symptoms. Of course, if you want proof, the stool tests for food intolerances from Dr. Fine's lab (above in Gloria's post) are the gold standard.
I can remember feeling like you do right now - it took me almost 9 mo. of diet to see a formed B.M. But I have been in remission now for years - and you will get there too! Hang in there.
Love,
Polly
Here's your group hug:
And this is from me:
I agree that other intolerances may be the culprit. Is there any way you could avoid gluten, all dairy, and soy for a week or two? I would guess you would see at least a lessening of symptoms. Of course, if you want proof, the stool tests for food intolerances from Dr. Fine's lab (above in Gloria's post) are the gold standard.
I can remember feeling like you do right now - it took me almost 9 mo. of diet to see a formed B.M. But I have been in remission now for years - and you will get there too! Hang in there.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi capenancy, Here's another hug and hope for you to get things figured out. I've been on a full dose of entocort since Feb. and plan to start tapering in Sept.
I've eliminated gluten, dairy, egg, soy, yeast (based on Enterolab findings) and anything else that seems to bother me. I'm crossing my fingers that when I try, things will work out, but if they don't I'm glad I've got this place to help out. Good Luck, JoAnn
I've eliminated gluten, dairy, egg, soy, yeast (based on Enterolab findings) and anything else that seems to bother me. I'm crossing my fingers that when I try, things will work out, but if they don't I'm glad I've got this place to help out. Good Luck, JoAnn
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MaggieRedwings
- King Penguin
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- Location: SE Pennsylvania
Morning Capenancy,
I avoid the 4 foods you listed since they always throw me in a tizzy - especially the watermelon.
Here's a hug for you and I know it seems like it takes forever to get a handle on this disease but you will do it.
Love, Maggie
I avoid the 4 foods you listed since they always throw me in a tizzy - especially the watermelon.
Here's a hug for you and I know it seems like it takes forever to get a handle on this disease but you will do it.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
CapeNancy----I know just how U feel when *peoples* whether they be FAMILY-FRIENDS--just dont get it and ROLL their eyes!!
Dont *cave* in---keep fighting to get onto that *wellness road* ----
and here ya go
Barbara
Dont *cave* in---keep fighting to get onto that *wellness road* ----
and here ya go
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi Capenancy,
Sorry to hear you are struggling. It is soooooo frustrating when you don't know what you are reacting to.
Fruits and veggies could be the cuplrit, but I agree that you should try avoiding dairy and soy to see what happens.
One other thought - you say you were a "bread and cookie gal". Are you now eating lots of GF versions of bread and cookies? Pay attention to see if you have a problem with tapioca or some other common ingredient in those foods. I recently added tapioca to my list of intolerances and Matthew has also said that tapioca sets him off. Also carrageenan is known to induce inflammation.
Take care,
Mary Beth
Sorry to hear you are struggling. It is soooooo frustrating when you don't know what you are reacting to.
Fruits and veggies could be the cuplrit, but I agree that you should try avoiding dairy and soy to see what happens.
One other thought - you say you were a "bread and cookie gal". Are you now eating lots of GF versions of bread and cookies? Pay attention to see if you have a problem with tapioca or some other common ingredient in those foods. I recently added tapioca to my list of intolerances and Matthew has also said that tapioca sets him off. Also carrageenan is known to induce inflammation.
Take care,
Mary Beth
I second what Mary Beth has to say. I love my cakes and cookies too. I went gluten free last week and made a coffee cake with the gluten-free flour, made a nice pasta salad with gluten-free noodles, etc. Of course this was the first time my system had ever seen these grains, and my gut basically said WTF??? 
Now I've backed off and am going to introduce them to my system more gradually! Of course some of the problem might also be a sensitivity to one of the ingredients, like Mary Beth said.
Now I've backed off and am going to introduce them to my system more gradually! Of course some of the problem might also be a sensitivity to one of the ingredients, like Mary Beth said.Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Dear Capenancy:
If you have read my previous posts, you will see that I have been dealing with this problem for many many years. I know how frustrated you are. I would love to send you a hug - but my computer doesn't respond to the "emotions message body" - perhaps Tex can help me with this some day - but not really that important, Tex. My suggestion:
Start a food and medicine diary - that is the only way you will find out how you are reacting to whatever you are ingesting. It is a tedious chore - but it really does pay off.
My other half too, wasn't very supportive or understanding until my "restaurant accident." Needless to say very humiliating for both of us. And from that time on, when I say I have a problem coming up. He immediately pulls over (when driving); or whatever other remedies needs to be addressed - he is right there. I only hope and pray that you don't have to suffer from one of these episodes in order to get our husband's attention to your needs. It is really hard for someone healthy to realize what a debilitating and humiliating disease we all are experiencing.
Jerri
If you have read my previous posts, you will see that I have been dealing with this problem for many many years. I know how frustrated you are. I would love to send you a hug - but my computer doesn't respond to the "emotions message body" - perhaps Tex can help me with this some day - but not really that important, Tex. My suggestion:
Start a food and medicine diary - that is the only way you will find out how you are reacting to whatever you are ingesting. It is a tedious chore - but it really does pay off.
My other half too, wasn't very supportive or understanding until my "restaurant accident." Needless to say very humiliating for both of us. And from that time on, when I say I have a problem coming up. He immediately pulls over (when driving); or whatever other remedies needs to be addressed - he is right there. I only hope and pray that you don't have to suffer from one of these episodes in order to get our husband's attention to your needs. It is really hard for someone healthy to realize what a debilitating and humiliating disease we all are experiencing.
Jerri
Truer words were never spoken.Jerri wrote:It is really hard for someone healthy to realize what a debilitating and humiliating disease we all are experiencing.
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.
Here's another hug!
For what it is worth it took me several years to go from 3 entocort a day to 2 and another year to get to 1 a day. I can eat almost anything I want... but in moderation. If I go nuts eating dunkin donuts.. :) I will be back to 3 pills a day for several days.
I am lucky that my husband was home (actually, he was out of work) when I first got sick.. and he saw how awful it was for me to deal with. I almost never left the house and when I did I carried diapers and a change of clothes.
Writing down what you eat and trying only a simple diet at first helps.. not easy to keep to simple diet or remember to write down what you ate..but it does help you figure out rather quickly what will cause you the most severe problems.
The thing that still amazes my husband is how fast I can react to food... meaning dash to the john. If we eat out at a new place.. sometimes I am lucky to make it home in time to hit the john... even when I have not had a problem for months. Some foods just act like drano to my system and I am never sure why.. could be some spice for all I know.
granny
For what it is worth it took me several years to go from 3 entocort a day to 2 and another year to get to 1 a day. I can eat almost anything I want... but in moderation. If I go nuts eating dunkin donuts.. :) I will be back to 3 pills a day for several days.
I am lucky that my husband was home (actually, he was out of work) when I first got sick.. and he saw how awful it was for me to deal with. I almost never left the house and when I did I carried diapers and a change of clothes.
Writing down what you eat and trying only a simple diet at first helps.. not easy to keep to simple diet or remember to write down what you ate..but it does help you figure out rather quickly what will cause you the most severe problems.
The thing that still amazes my husband is how fast I can react to food... meaning dash to the john. If we eat out at a new place.. sometimes I am lucky to make it home in time to hit the john... even when I have not had a problem for months. Some foods just act like drano to my system and I am never sure why.. could be some spice for all I know.
granny
I feel your pain and bloating and all of it Capenancy.
My Doc gave me "something" I remember at the beginning that was strong enough to constipate an elephant herd and it did nothing for me. Nothing stopped the squirts..NOTHING. What helped me the most was Psyllium husks and no gluten.
Hang in there and hopefully it willl settle down and you can get back to normal. I am so depressed right now, because after 2 years mine has started up again.
So I am on the straight and narrow for while, no gluten.
I so agree about fruits. What seems to have set me off is watermellon and necterines, popcorn, peanuts...
I actually thought I was getting a bit better, this bout has been going on for about a month or so, but then I got the flu a couple days ago..oh joy of joys!
Hang in there and just know you will get it under control and get better. I have to always think that way.
My Doc gave me "something" I remember at the beginning that was strong enough to constipate an elephant herd and it did nothing for me. Nothing stopped the squirts..NOTHING. What helped me the most was Psyllium husks and no gluten.
Hang in there and hopefully it willl settle down and you can get back to normal. I am so depressed right now, because after 2 years mine has started up again.
So I am on the straight and narrow for while, no gluten.
I so agree about fruits. What seems to have set me off is watermellon and necterines, popcorn, peanuts...
I actually thought I was getting a bit better, this bout has been going on for about a month or so, but then I got the flu a couple days ago..oh joy of joys!
Hang in there and just know you will get it under control and get better. I have to always think that way.
I already feel like I have found a home. That is what I am going through right now. Drano..boy you got that right!The thing that still amazes my husband is how fast I can react to food... meaning dash to the john. If we eat out at a new place.. sometimes I am lucky to make it home in time to hit the john... even when I have not had a problem for months. Some foods just act like drano to my system and I am never sure why.. could be some spice for all I know.
granny