hello.I am a new member
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hello.I am a new member
Hello .Just wanted to say Hi to everyone here.I have been diagnosed with LC after suffering for many years.i am currently on entocort.Also like to point out i have a nut and peanut allergy and Pollen allergy syndrome .Also i am allergic to sunflower seeds and sesame seeds.Anyway any advice would be great.Thanks
Re: hello.I am a new member
bw42 wrote:Hello .Just wanted to say Hi to everyone here.I have been diagnosed with LC after suffering for many years.i am currently on entocort.Also like to point out i have a nut and peanut allergy and Pollen allergy syndrome .Also i am allergic to sunflower seeds and sesame seeds.Anyway any advice would be great.Thanks
Welcome from another newbie. Working through it all and fighting my insurance company for entocort. Wishing us both great things in the next year as we discover how to make this better for ourselves!
Hi BW,
Welcome to the discussion board. As for advice, you may want to consider doing what virtually all of us here do in order to prevent a relapse of symptoms when the Entocort treatment ends — we change our diet to remove all of the foods that cause us to react, starting with gluten and dairy products. As our gut heals, often we discover that we also have additional food sensitivities, but as we avoid them and our gut heals, our digestive system will begin to function again, and the symptoms will fade away.
If you are allergic to peanuts, then you are almost surely sensitive to soy and most or all other legumes, also. Most of us here (including me) are sensitive to at least gluten, dairy, and soy.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. As for advice, you may want to consider doing what virtually all of us here do in order to prevent a relapse of symptoms when the Entocort treatment ends — we change our diet to remove all of the foods that cause us to react, starting with gluten and dairy products. As our gut heals, often we discover that we also have additional food sensitivities, but as we avoid them and our gut heals, our digestive system will begin to function again, and the symptoms will fade away.
If you are allergic to peanuts, then you are almost surely sensitive to soy and most or all other legumes, also. Most of us here (including me) are sensitive to at least gluten, dairy, and soy.
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.
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome BW,
You will definitely find a lot of answers to your questions here. As Erica said, read, read and then read more. Each of us have developed food sensitivities when our MC was triggered. First step is to find out what yours are and eliminate them from your diet.
Glad you have found this forum.
Paula
You will definitely find a lot of answers to your questions here. As Erica said, read, read and then read more. Each of us have developed food sensitivities when our MC was triggered. First step is to find out what yours are and eliminate them from your diet.
Glad you have found this forum.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Hi, BW. Welcome to our group. Read the forums and ask a lot of questions and you'll be on the right path. Good luck on your journey.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
A Most Sincere Welcome
Hello, and Welcome! I'm only here a few months myself and wow, if I hadn't found this forum when I did, I would not be nearly as informed as I am today, nor would I have found the much needed support that I have from everyone here. If I have progressed at all, it's primarily thanks to their help.
I started by buying the Book on Microscopic Colitis. (TOP, Right Side of this Page shows a LINK) TEX wrote it, himself. It's been an Invaluable Aid to me from the beginning.
I learned to Search the forum, too, for questions other people had asked and had answered that I was interested in, too.
But mostly I asked about Everything that was on my mind, while sharing the specifics of my present state, so to better help others understand what my situation was and what my main concerns were.
So - You're off to a good start! Keep Coming Back!
TREESE
I started by buying the Book on Microscopic Colitis. (TOP, Right Side of this Page shows a LINK) TEX wrote it, himself. It's been an Invaluable Aid to me from the beginning.
I learned to Search the forum, too, for questions other people had asked and had answered that I was interested in, too.
But mostly I asked about Everything that was on my mind, while sharing the specifics of my present state, so to better help others understand what my situation was and what my main concerns were.
So - You're off to a good start! Keep Coming Back!
TREESE
Diagnosed with Collagenous Colitis, June 2015.
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
Diagnosed Dec 2020 with Celiac Disease during 1st Flare up.
Spine Surgery 2010. Chronic Pain. FAITH!!
Thanks for the support.everyone.My Nurse did say because of my allergies there was a possible link.I agree on the soy comments as when i ate a meal which contained Quorn which is a kind of soya based vegetarian alternative over in the UK it played serious havoc with my gut.Also a soya based ice cream i tried a few months had the same effect.i suppose it is another product i will have to completely cut out.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome to the group
not sure how much reading you have done as yet,
the best option is a bland, home cooked, well cooked, (low fibre) meals. Good serves of animal protein and a couple of 'safe veges'
if you are reacting to soy, avoid beans and peas
avoid corn as it is too hard to digest
if your body is super inflammed, then you are more likely to have bigger reactions to triggers....
are you taking Vit D3? have you had your levels checked recently?
if you are taking medication or not, the best option to wellness is diet and lifestyle changes...
not sure how much reading you have done as yet,
the best option is a bland, home cooked, well cooked, (low fibre) meals. Good serves of animal protein and a couple of 'safe veges'
if you are reacting to soy, avoid beans and peas
avoid corn as it is too hard to digest
if your body is super inflammed, then you are more likely to have bigger reactions to triggers....
are you taking Vit D3? have you had your levels checked recently?
if you are taking medication or not, the best option to wellness is diet and lifestyle changes...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi! Welcome! I'm new here too! I have Collagen Colitis, IBS,Rectal Prolapse,possibly Pelvic Floor Dysfunction, (Chronic Constipation/Diarreah) recently X-rayed ( A few months ago I guess it was.) & small bowel obstruction or Ileus. My Dr called, told me to get to the ER fast, then after near Five hours later after cat-scan and tests Dr there said it was NOT severe enough for surgery. Next, I see my Gastroentologist, I'm then sent a few days later back to the Hospital as Out-patient for a Fluoroscopy, about one week later the Gastroentologist's Office calls, tells me ........ALL IS NORMAL. Soon afterwards diarreah gets worse Dr wants another colonoscopy, this time they find I have Collagen Colitis and put on Steroid Buedonzide (Spelling?)
Seems right now I just have to live with it all.
Thanks for letting me share!
Seems right now I just have to live with it all.
Thanks for letting me share!
I am a 54 yr old male diagnosed with Collegen Colitis, Also rectal Prolapse,Ulcers,IBS, and Most likely Pelvic Floor Dysfunction.
Hi,
Welcome to the discussion board. Believe it or not, your description of your experiences with GI specialists prior to your diagnosis is not all that uncommon. Many physicians are pretty much lost/confused when they encounter a patient with collagenous colitis (CC), lymphocytic colitis (LC), or any other form of microscopic colitis (MC). I'm just surprised that they didn't diagnose you with IBS somewhere along the way, while they were at it.
How you handle the rectal prolapse and/or pelvic floor dysfunction issues will be up to you and your doctors, but you certainly don't have to live with the symptoms of CC. Most of us here resolve our MC/CC/LC symptoms by either using a treatment based on diet changes that avoid the foods that are causing the inflammation, or a combination of diet changes and medications such as the budesonide that you mentioned.
Learning to live with the symptoms of CC is not a very practical option. The symptoms can be very debilitating, and they can leave us practically chained to our bathroom. The budesonide might reduce or even stop your CC symptoms if you are lucky, but when your doctor tells you it is time to stop, if you have not made the proper diet changes, your symptoms will relapse. And the problem with budesonide is that it can make the constipation phase of a reaction pattern much worse — so much worse that you may well not be able to use it at all. If you are able to use it though, and you wean off the budesonide slowly, and make the proper diet changes now, there is a very good chance that you will be able to maintain remission indefinitely. In some cases, we have to continue to take a small maintenance dose of budesonide, along with the continued diet changes, in order to remain in remission. But that beats the heck out of surrendering to the disease and just living with it.
But most of us who have constipation as a symptom, are not able to use budesonide. And don't expect your doctors to be aware of of the effectiveness of treatment by diet changes. Their medical training does not include such information, so most of them will deny that diet changes can be used to treat CC. Some GI specialists are beginning to learn more about treating the disease, but so far, they are few and far between. In the meantime, you can learn how to treat the disease here on this discussion board.
Before I changed my diet, my symptoms also included alternating diarrhea and constipation. So I didn't use any meds to achieve remission — I only used diet changes. To get started, you might find it helpful to download a fact sheet about the disease from the Microscopic Colitis Foundation website, and check out some of the treatment information there. You can find the download link by scrolling down the page to near the bottom of the home page of the website at this link:
http://www.microscopiccolitisfoundation.org/
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. Believe it or not, your description of your experiences with GI specialists prior to your diagnosis is not all that uncommon. Many physicians are pretty much lost/confused when they encounter a patient with collagenous colitis (CC), lymphocytic colitis (LC), or any other form of microscopic colitis (MC). I'm just surprised that they didn't diagnose you with IBS somewhere along the way, while they were at it.
How you handle the rectal prolapse and/or pelvic floor dysfunction issues will be up to you and your doctors, but you certainly don't have to live with the symptoms of CC. Most of us here resolve our MC/CC/LC symptoms by either using a treatment based on diet changes that avoid the foods that are causing the inflammation, or a combination of diet changes and medications such as the budesonide that you mentioned.
Learning to live with the symptoms of CC is not a very practical option. The symptoms can be very debilitating, and they can leave us practically chained to our bathroom. The budesonide might reduce or even stop your CC symptoms if you are lucky, but when your doctor tells you it is time to stop, if you have not made the proper diet changes, your symptoms will relapse. And the problem with budesonide is that it can make the constipation phase of a reaction pattern much worse — so much worse that you may well not be able to use it at all. If you are able to use it though, and you wean off the budesonide slowly, and make the proper diet changes now, there is a very good chance that you will be able to maintain remission indefinitely. In some cases, we have to continue to take a small maintenance dose of budesonide, along with the continued diet changes, in order to remain in remission. But that beats the heck out of surrendering to the disease and just living with it.
But most of us who have constipation as a symptom, are not able to use budesonide. And don't expect your doctors to be aware of of the effectiveness of treatment by diet changes. Their medical training does not include such information, so most of them will deny that diet changes can be used to treat CC. Some GI specialists are beginning to learn more about treating the disease, but so far, they are few and far between. In the meantime, you can learn how to treat the disease here on this discussion board.
Before I changed my diet, my symptoms also included alternating diarrhea and constipation. So I didn't use any meds to achieve remission — I only used diet changes. To get started, you might find it helpful to download a fact sheet about the disease from the Microscopic Colitis Foundation website, and check out some of the treatment information there. You can find the download link by scrolling down the page to near the bottom of the home page of the website at this link:
http://www.microscopiccolitisfoundation.org/
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.