Newly diagnosed collagenous colitis
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Newly diagnosed collagenous colitis
Hello, Newbie here, after colonoscopy I was diagnosed with collagenous colitis. Earlier this year after endoscopy I was diagnosed with GERD and gastritis. I had my thyroid removed 5 years ago. I am 57 and living a new normal that is not so normal. All of a sudden started having diarrhea about 4 months ago. I thought it was a virus since I had low grade fever. No blood or serious cramping or pain. Bowel Incontinence and I have to wear a diaper every day. The dr has done blood tests and stool tests. All negative. Am going for hydrogen breath test next week. This has really changed my life as you know. Diet has not been discussed, only suggested I take benefiber. Anyone with this condition or any input would be greatly appreciated. Mellie
Hi Mellie,
Welcome to our Internet family. We all have some form of microscopic colitis, so we all understand exactly what you are dealing with.
Before discussing diet changes, let's consider your GERD and gastritis treatment. GERD and gastritis are commonly associated with and commonly caused by microscopic colitis (MC), so you probably had collagenous colitis (CC) earlier in the year when those symptoms developed.
If you didn't already have it, there is a chance that you might be able to stop it without any diet changes by discontinuing the treatment with the PPI that you have been prescribed to treat GERD and gastritis. PPIs very often cause CC or lymphocytic colitis (LC), and many members here can trace the beginning of their MC back to the PPI that they were prescribed earlier.
If the PPI caused your CC, and you continue to take it, it will almost surely lead to the development of food sensitivities, and then diet changes will be the only way to stop the inflammation from being generated in your intestines. But diet changes will not help, as long as we are taking a PPI, because PPIs cause MC/CC/LC.
I'm sorry to have such bad news, but quite a few members here have had an experience very similar to yours. PPIs are a very iatrogenic drug, unfortunately, but strangely, doctors love to prescribe them.
And please don't take Benefiber. Your doctor obviously doesn't understand how to treat CC, because fiber just makes the inflammation worse as long as the CC is active.
Again, welcome aboard, and please feel free to ask anything. Would you mind if I move this thread to the Main Message Board (the next forum below this one)? You will receive more responses there, because more members will notice your post there.
Tex
Welcome to our Internet family. We all have some form of microscopic colitis, so we all understand exactly what you are dealing with.
Before discussing diet changes, let's consider your GERD and gastritis treatment. GERD and gastritis are commonly associated with and commonly caused by microscopic colitis (MC), so you probably had collagenous colitis (CC) earlier in the year when those symptoms developed.
If you didn't already have it, there is a chance that you might be able to stop it without any diet changes by discontinuing the treatment with the PPI that you have been prescribed to treat GERD and gastritis. PPIs very often cause CC or lymphocytic colitis (LC), and many members here can trace the beginning of their MC back to the PPI that they were prescribed earlier.
If the PPI caused your CC, and you continue to take it, it will almost surely lead to the development of food sensitivities, and then diet changes will be the only way to stop the inflammation from being generated in your intestines. But diet changes will not help, as long as we are taking a PPI, because PPIs cause MC/CC/LC.
I'm sorry to have such bad news, but quite a few members here have had an experience very similar to yours. PPIs are a very iatrogenic drug, unfortunately, but strangely, doctors love to prescribe them.
And please don't take Benefiber. Your doctor obviously doesn't understand how to treat CC, because fiber just makes the inflammation worse as long as the CC is active.
Again, welcome aboard, and please feel free to ask anything. Would you mind if I move this thread to the Main Message Board (the next forum below this one)? You will receive more responses there, because more members will notice your post there.
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.
Diet
This is my second post. Since Monday I had been able to wait until I got to the bathroom. Thursday night I had a cup of coffee. Mistake. Since then I have had bowel incontinence and last night I had to get up many times to go. I wear depends every day for a month now. Have had diarrhea for 4 months. After colonoscopy I was diagnosed with collagenous colitis. This is a nightmare. Never had trouble with diarrhea in my life. Then all of a sudden here it is. I just knew it was a virus since some days I run a low grade fever. But the ones they tested for were negative. All blood work and stool samples have come back normal. I was shocked when the last stool samples were normal. I have also noticed my psoriasis is worse I had a thyroidectomy in 2010. Since then I have been either hypo or hyperthyroid with synthroid. Right now I am hypo. Still working on getting med right after 5 years. I see where a lot of people exclude gluten and dairy. I had spaghetti last night and I put margarine on it. I was in the bathroom all night. Took lomotil this morning. I keep thinking it will go away or someone will figure out exactly what I need to do. I am worn down needless to say. Thank you for letting me vent.
Hi Mellie,
I'm sorry that your symptoms are so persistent, but that's typical with MC unless we manage to avoid all of the foods that cause our immune system to produce antibodies that result in the generation of the inflammation in our intestines that disrupts our digestion. Most of us either order stool tests from EnteroLab to determine which foods are causing the production of antibodies, or we simply avoid all of the foods that typically cause most MC patients to react. We eat a very simple, bland diet until our gut heals enough to bring remission, and then we can test certain foods back into our diet, one at a time, to see if we can tolerate them.
Most of us here are sensitive to gluten, all dairy products, and soy. Many of us are also sensitive to eggs, and some are sensitive to many other foods. You can see the foods that I have to avoid, listed under my avatar, for example.
A few people are lucky enough to enjoy spontaneous remission of symptoms, at least part of the time. But most of us are not so lucky, and we have to custom tailor our diet, and carefully avoid all foods and medications that cause us to react, in order to get our life back. And we have to avoid most of those foods for the rest of our life, because there is no known cure for MC/LC/CC.
Tex
I'm sorry that your symptoms are so persistent, but that's typical with MC unless we manage to avoid all of the foods that cause our immune system to produce antibodies that result in the generation of the inflammation in our intestines that disrupts our digestion. Most of us either order stool tests from EnteroLab to determine which foods are causing the production of antibodies, or we simply avoid all of the foods that typically cause most MC patients to react. We eat a very simple, bland diet until our gut heals enough to bring remission, and then we can test certain foods back into our diet, one at a time, to see if we can tolerate them.
Most of us here are sensitive to gluten, all dairy products, and soy. Many of us are also sensitive to eggs, and some are sensitive to many other foods. You can see the foods that I have to avoid, listed under my avatar, for example.
A few people are lucky enough to enjoy spontaneous remission of symptoms, at least part of the time. But most of us are not so lucky, and we have to custom tailor our diet, and carefully avoid all foods and medications that cause us to react, in order to get our life back. And we have to avoid most of those foods for the rest of our life, because there is no known cure for MC/LC/CC.
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.
Sure. Here's a link. Please be aware that all of Dee's recipes are free of gluten, dairy, and soy. Some of the recipes posted there by others may possibly include some of those items in some cases, so it's always best to be sure to take note of the ingredients. Dee has also posted ways to make egg substitutes, for those who may be sensitive to eggs.
Dee's Kitchen
MC is a very depressing disease, and incidentally, gluten sensitivity is documented by research to cause depression. Members in similar situations have posted that provided it is effective for you (as you know, anti-depressants tend to work differently for various individuals), Wellbutrin (bupropion) seems to have the lowest risk of side effects, and usually is less likely to adversely affect MC.
Good luck with this, and please keep us posted if you decide to try bupropion, because we learn from each other's experiences here.
Tex
Dee's Kitchen
MC is a very depressing disease, and incidentally, gluten sensitivity is documented by research to cause depression. Members in similar situations have posted that provided it is effective for you (as you know, anti-depressants tend to work differently for various individuals), Wellbutrin (bupropion) seems to have the lowest risk of side effects, and usually is less likely to adversely affect MC.
Good luck with this, and please keep us posted if you decide to try bupropion, because we learn from each other's experiences here.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Mellie
welcome! to the group and sympathies that you had to find us
Have you read the posts aimed at new people?
another good discussion thread is the journey of Erica, who joined us 6 months or so ago.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
there are some meal ideas, mental and emotional aspects of life with MC, and reminders to be patient, it takes time.
in line with the depression/anxiety/mood issues - have you had your Vit D3 level checked recently?
there is wide ranging research confirming the link of depression/anxiety/mood issues with Vit D3 and magnesium deficiency.
ongoing inflammation depletes these key nutrients.
Using transdermal magnesium (spray/lotion) is a fantastic way to get high doses of magnesium without irritating the gut..
hope this helps
welcome! to the group and sympathies that you had to find us
Have you read the posts aimed at new people?
another good discussion thread is the journey of Erica, who joined us 6 months or so ago.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
there are some meal ideas, mental and emotional aspects of life with MC, and reminders to be patient, it takes time.
in line with the depression/anxiety/mood issues - have you had your Vit D3 level checked recently?
there is wide ranging research confirming the link of depression/anxiety/mood issues with Vit D3 and magnesium deficiency.
ongoing inflammation depletes these key nutrients.
Using transdermal magnesium (spray/lotion) is a fantastic way to get high doses of magnesium without irritating the gut..
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Mellie,
You are most definitely not the only one here who has had to rely on products such as Depends at times. If you want to read some of the details of such experiences, you should find the post at the following link interesting. It's a long thread (6 pages in all), but interesting readiong.
I wish I had worn a daiper.....
There are other stories to be found in the same forum, if you want to read more:
Experiences That Could Only Happen To Someone Who Has MC
Tex
You are most definitely not the only one here who has had to rely on products such as Depends at times. If you want to read some of the details of such experiences, you should find the post at the following link interesting. It's a long thread (6 pages in all), but interesting readiong.
I wish I had worn a daiper.....
There are other stories to be found in the same forum, if you want to read more:
Experiences That Could Only Happen To Someone Who Has MC
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Oh yes, I have had to wear a diaper, and even now, after good healing, things like anesthetic/dental work will cause short notice MC Mud accidents!!
used to wear them on plane flights when i was travelling for work...
Wearing a diaper is not the worst thing in the world. astronauts wear them as part of their job ...
used to wear them on plane flights when i was travelling for work...
Wearing a diaper is not the worst thing in the world. astronauts wear them as part of their job ...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Diet
Mellie,Mellie wrote:
Thursday night I have also noticed my psoriasis is worse I had a thyroidectomy in 2010. Since then I have been either hypo or hyperthyroid with synthroid. Right now I am hypo. Still working on getting med right after 5 years. I see where a lot of people exclude gluten and dairy. I had spaghetti last night and I put margarine on it. I was in the bathroom all night. Took lomotil this morning. I keep thinking it will go away or someone will figure out exactly what I need to do. I am worn down needless to say. Thank you for letting me vent.
I have had psoriasis for more than 40 years, but 4 months after quitting gluten and casein, all my psoriasis spots disappeared. I think I still have psoriasis, as it is an autoimmune disease, but it is no longer visible, and I have no joint or muscle pains any more.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
