After experiencing stomach pains for the past 2 months and having CT scan, ultrasound, endoscopy and colonoscopy tests. My GI said that I have collagenous Colitis from a biospy from the colonoscopy.
I have been taking a high dose of nexium 2x40mg tables daily for the past 2 months as they thought it might be acid reflux, My GI advised to stop taking it yesterday. The nexium never seemed to do anything anyway.
I have also been trying acupuncture and traditional Chinese medicine herbs for the past month and while at first I experienced a lessening of pain, it seems to have stopped working. My GI advised to stop taking herbs too.
I am currently on an upswing of pain (3 of 10) since the colonoscopy 2 weeks ago. It seemed to have been getting better leading up to the colonoscopy.
My GI said I should take Pepto-Bismol which I have ordered online (We cant get it in Australia)
I have not been experiencing any diahrrea over the past 2 months, if anything it is more constipation.
I tried the fodmap diet for 3 weeks ago and that didnt seem to do anything but my GI advised to keep going with it.
I have lost 6kgs dropping from 78 to 72kgs. I get full/bloated very quickly on small amounts of food (mainly chicken, veges, rice).
Leading up to this issue I was super fit and healthy but my health has deteriorated significantly in the past two months.
The abdominal pains is what is bothering me the most, they caused me to check into hospital twice eariy into this issue and morphine was the only thing that helped.
I am worried I am heading down this road again, as the only advice my GI gave me was to stop taking nexium, stop the herbs and try Pepto-Bismol.
New Member - Australian Male 31
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to the discussion board. It's almost certain that the Nexium caused your CC. It's a well-know side effect risk of the medication. I don't understand why doctors so freely prescribe the PPIs when they are known to cause so many serious health issues (CC, LC, osteoporosis, C. diff, SIBO, etc.), but physicians continue to write prescriptions for them in many cases where the drugs shouldn't be used.
In cases where MC is drug-induced, sometimes, when caught early on, just stopping the use of the drug can bring remission, but unfortunately most of us aren't that lucky. Your symptoms should begin to improve about 3 or 4 days after you stop the Nexium, if stopping the drug is going to bring remission (because it continues to be effective in the body for at least 3 days).
If that doesn't happen, then you are in the same boat as most of the rest of us, with MC and no easy way to control it. The Entocort might help to control your symptoms, or it might make it worse. If you are not having diarrhea (D), then it will probably make your symptoms worse, because it will be likely to cause constipation (C).
It's not uncommon for this disease to cause bloating, cramps, and persistent abdominal pain, in the absence of D. Those symptoms are caused by poor digestion that results from the inflammation associated with the disease. And because the medications typically do not work in this situation, the symptoms can be more difficult to control. The only practical way to control the symptoms that we are aware of is to make diet changes that eliminate the foods that are causing the problem. When we can't digest certain foods, that interrupts the digestive process because the food begins to spoil (it cannot be digested, so it's fermented by bacteria), and this causes the gas, bloating, and pain.
The reason why we can't digest most of these foods is because when the gut in inflamed, it can't product the enzymes needed to digest certain foods. And much worse than that, when the genes that predispose to MC/CC/CL are triggered, the genes that predispose to gluten sensitivity are also triggered. This doesn't necessarily mean that you have celiac disease, because the type of gluten sensitivity that we have is caused by the triggering on non-celiac genes. The problem is, we are just as sensitive to gluten as the average celiac, so we have to totally avoid even tiny traces of it because gluten causes our immune system to produce antibodies in the gut. The celiac blood tests won't normally detect these antibodies, because they are produced in the intestines, not in the blood. The only test that will reliably detect them is a unique stool test offered by a lab in the USA that checks for IgA antibodies to gluten in stool samples. But virtually all of us here have the problem, so a test is really unnecessary, because the odds are extremely high that you have the same problem as the rest of us.
In addition to avoiding gluten, we also have to avoid all dairy products, and many of us have to avoid all products derived from soy. We also have to avoid all artificial sweeteners, and minimize natural sugars in our diet (because we cannot digest most sugars well when our gut is inflamed). Fiber must also be minimized, because it is very abrasive to the delicate mucosal lining of the intestines when the mucosa are already hyperinflamed. Any vegetables we eat must be peeled (because most of the fiber is in the peel), and overcooked to make them easier to digest. Most fruit should be avoided (or at least minimized) because of the fiber and the high sugar (fructose) content. No raw vegetables or salads should be eaten until after you have been in remission for long enough to allow a significant amount of intestinal healing. Banana is the only fruit that can be eaten raw until after we are in remission. Some of us are also sensitive to eggs, and some of us have other food sensitivities. But gluten, dairy, and soy are the most common food problems for us.
Pepto-Bismol is effective for treating MC, but it takes high doses (up to 8 or 9 tablets per day, or the equivalent, for 8 weeks). Not all of us can tolerate that much Pepto-Bismol, because it can cause neurological issues, such as tinnitus (ringing in the ears). If tinnitus develops, stop taking the Pepto, because the damage can become permanent in some cases if the treatment is not stopped soon enough. But unless you make the necessary diet changes while taking the Pepto, your symptoms will probably relapse a few weeks after ending the treatment regimen. This is true for all medications used for treating this disease. The medications treat the symptoms, not the cause of the inflammation. The only way to get long-term relief is to treat the cause of the inflammation by avoiding the foods that cause the inflammation in the first place.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. It's almost certain that the Nexium caused your CC. It's a well-know side effect risk of the medication. I don't understand why doctors so freely prescribe the PPIs when they are known to cause so many serious health issues (CC, LC, osteoporosis, C. diff, SIBO, etc.), but physicians continue to write prescriptions for them in many cases where the drugs shouldn't be used.
In cases where MC is drug-induced, sometimes, when caught early on, just stopping the use of the drug can bring remission, but unfortunately most of us aren't that lucky. Your symptoms should begin to improve about 3 or 4 days after you stop the Nexium, if stopping the drug is going to bring remission (because it continues to be effective in the body for at least 3 days).
If that doesn't happen, then you are in the same boat as most of the rest of us, with MC and no easy way to control it. The Entocort might help to control your symptoms, or it might make it worse. If you are not having diarrhea (D), then it will probably make your symptoms worse, because it will be likely to cause constipation (C).
It's not uncommon for this disease to cause bloating, cramps, and persistent abdominal pain, in the absence of D. Those symptoms are caused by poor digestion that results from the inflammation associated with the disease. And because the medications typically do not work in this situation, the symptoms can be more difficult to control. The only practical way to control the symptoms that we are aware of is to make diet changes that eliminate the foods that are causing the problem. When we can't digest certain foods, that interrupts the digestive process because the food begins to spoil (it cannot be digested, so it's fermented by bacteria), and this causes the gas, bloating, and pain.
The reason why we can't digest most of these foods is because when the gut in inflamed, it can't product the enzymes needed to digest certain foods. And much worse than that, when the genes that predispose to MC/CC/CL are triggered, the genes that predispose to gluten sensitivity are also triggered. This doesn't necessarily mean that you have celiac disease, because the type of gluten sensitivity that we have is caused by the triggering on non-celiac genes. The problem is, we are just as sensitive to gluten as the average celiac, so we have to totally avoid even tiny traces of it because gluten causes our immune system to produce antibodies in the gut. The celiac blood tests won't normally detect these antibodies, because they are produced in the intestines, not in the blood. The only test that will reliably detect them is a unique stool test offered by a lab in the USA that checks for IgA antibodies to gluten in stool samples. But virtually all of us here have the problem, so a test is really unnecessary, because the odds are extremely high that you have the same problem as the rest of us.
In addition to avoiding gluten, we also have to avoid all dairy products, and many of us have to avoid all products derived from soy. We also have to avoid all artificial sweeteners, and minimize natural sugars in our diet (because we cannot digest most sugars well when our gut is inflamed). Fiber must also be minimized, because it is very abrasive to the delicate mucosal lining of the intestines when the mucosa are already hyperinflamed. Any vegetables we eat must be peeled (because most of the fiber is in the peel), and overcooked to make them easier to digest. Most fruit should be avoided (or at least minimized) because of the fiber and the high sugar (fructose) content. No raw vegetables or salads should be eaten until after you have been in remission for long enough to allow a significant amount of intestinal healing. Banana is the only fruit that can be eaten raw until after we are in remission. Some of us are also sensitive to eggs, and some of us have other food sensitivities. But gluten, dairy, and soy are the most common food problems for us.
Pepto-Bismol is effective for treating MC, but it takes high doses (up to 8 or 9 tablets per day, or the equivalent, for 8 weeks). Not all of us can tolerate that much Pepto-Bismol, because it can cause neurological issues, such as tinnitus (ringing in the ears). If tinnitus develops, stop taking the Pepto, because the damage can become permanent in some cases if the treatment is not stopped soon enough. But unless you make the necessary diet changes while taking the Pepto, your symptoms will probably relapse a few weeks after ending the treatment regimen. This is true for all medications used for treating this disease. The medications treat the symptoms, not the cause of the inflammation. The only way to get long-term relief is to treat the cause of the inflammation by avoiding the foods that cause the inflammation in the first place.
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.
Thanks once again, Tex, for the info on PPIs. I've been taking Pantoprazole daily, as prescribed by my GI. Am discontinuing immediately! My rheumy prescribed Meloxicam, an NSAID, knowing I had colitis, and I discontinued that as well. Am now thoroughly wary of all meds.
Lymphocytic Colitis - 2015
Collagenous Colitis - 2011
Mixed Connective Tissue Disease - 2012
Psoriasis, Psoriatic Arthritis - 2012
Hashimoto's Disease - 2003
Non-Specific Colitis - 2004
Collagenous Colitis - 2011
Mixed Connective Tissue Disease - 2012
Psoriasis, Psoriatic Arthritis - 2012
Hashimoto's Disease - 2003
Non-Specific Colitis - 2004
Hi Buffy and 
Oats can often be a problem....have you tried rice? Also, whole nuts have a lot of fiber. Usually we do best initially with nut butters, if they are tolerated.
Good luck. BTW, your doc sounds knowledgeable about MC, compared to most.
Polly
Oats can often be a problem....have you tried rice? Also, whole nuts have a lot of fiber. Usually we do best initially with nut butters, if they are tolerated.
Good luck. BTW, your doc sounds knowledgeable about MC, compared to most.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Pam,
You're most welcome, of course.
Buffy,
I totally agree with Polly of course, because like many others here, I react to pure oats just as I would to wheat gluten. The primary storage protein in oats (avenin) is very similar to the primary storage protein in wheat (gluten), it's just a somewhat weaker protein.
Tex
You're most welcome, of course.
Buffy,
I totally agree with Polly of course, because like many others here, I react to pure oats just as I would to wheat gluten. The primary storage protein in oats (avenin) is very similar to the primary storage protein in wheat (gluten), it's just a somewhat weaker protein.
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
Hey there! welcome to the group, but sorry that you had to find us.
As mentioned by the others, Oats can be an issue for many,
Are you cooking the spinich and bok choy so that it is really soft?
i have always struggled with greens, no matter how good my gut is, I can only do small amount of greens 1-2 a week, so long as they are well cooked.
what brand of gluten free bread are you using?
most here have multiple intolerances, gluten and dairy are not our only triggers. I react worse to soy than gluten.
there are only a couple of gluten free breads that are soy free.
And I cant have processed flour products (gluten free breads, cakes etc) every day. I can only have them 2-3 times a week.
to react to so many things can sound a bit full on first, but once you figure out your safe eating plan, it gets way better!
I would stop the chinese herbs for now, they can be a bit intense on an inflammed gut - I have used acupuncture, liquid herbs for over 15 years but could not tolerate liquid herbs when my gut was super inflammed.
my advice based on the learnings of 2000 or so people here;
-meat and 3 veg well cooked, bland meals (use only salt and small amount of pepper for flavouring) if you want some easy meal ideas let me know...
-take Vit D3 - this is essential even in our aussie sun, people with IBD's need lots of Vit D3. The bioceuticals lingual Vit D3 forte is one of the best products. you absorb it through the saliva. high doses of Vit D3 have helped many here with gastric reflux etc. Have you had your Vit D3 levels checked? where in Aus are you? Any pharmacy that has naturopath on staff or does compounding will stock this product (health food stores in capital cities will have it too)
- definately ditch the nexium - supplement with magnesium and potassium
- avoid gluten, dairy, soy, eggs for now reduce the inflammation and get some healing happening. When things are not so intense then try eggs and see if you react
- do you live alone? if in shared kitchen you may need to keep your cookware etc separate and have separate utensils etc. sounds weird but yes, we can react to that level of contamination.
- minimise stress. lifestyle, rest, stress management is just as important as diet etc.
feel free to email me if you want to chat offline....
PS - sorry for delay in replying to you - was at car show on the weekend and then had dental work done...
As mentioned by the others, Oats can be an issue for many,
Are you cooking the spinich and bok choy so that it is really soft?
i have always struggled with greens, no matter how good my gut is, I can only do small amount of greens 1-2 a week, so long as they are well cooked.
what brand of gluten free bread are you using?
most here have multiple intolerances, gluten and dairy are not our only triggers. I react worse to soy than gluten.
there are only a couple of gluten free breads that are soy free.
And I cant have processed flour products (gluten free breads, cakes etc) every day. I can only have them 2-3 times a week.
to react to so many things can sound a bit full on first, but once you figure out your safe eating plan, it gets way better!
I would stop the chinese herbs for now, they can be a bit intense on an inflammed gut - I have used acupuncture, liquid herbs for over 15 years but could not tolerate liquid herbs when my gut was super inflammed.
my advice based on the learnings of 2000 or so people here;
-meat and 3 veg well cooked, bland meals (use only salt and small amount of pepper for flavouring) if you want some easy meal ideas let me know...
-take Vit D3 - this is essential even in our aussie sun, people with IBD's need lots of Vit D3. The bioceuticals lingual Vit D3 forte is one of the best products. you absorb it through the saliva. high doses of Vit D3 have helped many here with gastric reflux etc. Have you had your Vit D3 levels checked? where in Aus are you? Any pharmacy that has naturopath on staff or does compounding will stock this product (health food stores in capital cities will have it too)
- definately ditch the nexium - supplement with magnesium and potassium
- avoid gluten, dairy, soy, eggs for now reduce the inflammation and get some healing happening. When things are not so intense then try eggs and see if you react
- do you live alone? if in shared kitchen you may need to keep your cookware etc separate and have separate utensils etc. sounds weird but yes, we can react to that level of contamination.
- minimise stress. lifestyle, rest, stress management is just as important as diet etc.
feel free to email me if you want to chat offline....
PS - sorry for delay in replying to you - was at car show on the weekend and then had dental work done...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama