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Hi,
It's been a while. I have MC and Bam. I've been on Entyvio infusions for 3 1/2 years and I take Colestipol for BAM. My symptoms were under control for a long while, however that changed on 10-6. All of a sudden I have watery diarrhea since October 6th. My stool test showed calprotectin was normal and my Pancreatic elastase was 22.6, everything else was normal on the test too. I am currently on Creon to take when eating, they are doing absolutely nothing. I am eating plain & light. I am at my wits end. I was supposed to travel to NJ next week for Thanksgiving, I can't travel like this. I have 5-9 watery bouts of diarrhea a day. For some reason I can get sleep through the night without any episodes. I don't know if this matters but I had the Entyvio infusion on September 22nd and the covid vaccine on September 26th. To complicate things I got covid on October 27th, thanks to my husband passing it along. I'm wondering if the Entyvio is causing me trouble or if I had the infusion and vaccine to close together and that screwed me up. The Dr wants me to have an MRI of the abdomen, I'm having trouble getting an appointment. I'm really run down and a mess. Any advice would be appreciated.
Thanks,
Susanne
I'm a mess
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: I'm a mess
Hi Suzanne,
Here's my opinion: Entyvio is claimed to only target the digestive system, regarding immune response suppression. I suspect that should be taken with a grain of salt, because Entyvio is known to reduce the effectiveness of certain vaccines (including Covid 19). And that obviously infers that Entyvio has at least some systemic effects. And Entyvio is known to increase the risk of infections. Unfortunately, you've recently experienced all of these effects.
I have no idea what the medical opinion might be on this (if they have an opinion), but based on what I've been told by MC patients who catch Covid 19, the virus usually triggers a major MC reaction/relapse of relatively long-term duration, because the reaction is very difficult to stop that it tends to last for months. This is almost surely an undocumented effect of "long Covid."
So it's possible that catching Covid 19 might prolong (or supercharge) your MC reaction — or the vaccine may have suppressed the virus sufficiently that it might have had an insignificant effect on your MC. The big question is, "Why did your reaction began on October 6?"
I seriously doubt that the Covid vaccine (or booster — whichever you had) triggered the MC reaction. But I do believe that entivio reduced the effectiveness of the vaccine, and that (at least, to some extent), combined with the fact that as we get older, vaccines aren't as effective to begin with, diminished the effectiveness of the Covid vaccine.
But looking at the fact that your reaction started on October 6, according to medical evidence, there should have been no intervention between the covid vaccine and the Entyvio Infusion, leaving the reason for your reaction unexplained. I'm inclined to suspect that BAM is your primary problem, And you need to adjust your dose of Colestipol (or switch to a different bile acid sequestrant). If you're taking the original labeled dose, that's probably your problem. Patients with serious BAM problems usually need serious doses of a bile acid sequestrant in order to get the diarrhea under control, because the dose on the label is for cholesterol suppression (not for treating BAM). Treating BAM is an off label use, requiring an off label dose, usually much higher than the labeled dose.
Since you recently had covid 19, that might complicate the issue if it did trigger an MC reaction. If it did, that would make trying to determine an optimum dose of colestipol difficult (or impossible), until the effect of the Covid exacerbation ended. But if I were in your situation I would at least make an attempt to find a workable dose, and if it couldn't be established, then I would wait 5 or 6 months until the covert influence should be ended, and try again. Some people need at least 3 or 4 times the labeled dose in order to get control of the BAM. But before you sent out to try to find the best dose, read (or reread) the recent MCF newsletter that discusses BAM treatments. For your convenience, here's a direct link where you can read or download a copy of that newsletter:
https://www.microscopiccolitisfoundatio ... r_2025.pdf
Also, note that Entyvio:
I hope this helps.
Tex
Here's my opinion: Entyvio is claimed to only target the digestive system, regarding immune response suppression. I suspect that should be taken with a grain of salt, because Entyvio is known to reduce the effectiveness of certain vaccines (including Covid 19). And that obviously infers that Entyvio has at least some systemic effects. And Entyvio is known to increase the risk of infections. Unfortunately, you've recently experienced all of these effects.
I have no idea what the medical opinion might be on this (if they have an opinion), but based on what I've been told by MC patients who catch Covid 19, the virus usually triggers a major MC reaction/relapse of relatively long-term duration, because the reaction is very difficult to stop that it tends to last for months. This is almost surely an undocumented effect of "long Covid."
So it's possible that catching Covid 19 might prolong (or supercharge) your MC reaction — or the vaccine may have suppressed the virus sufficiently that it might have had an insignificant effect on your MC. The big question is, "Why did your reaction began on October 6?"
I seriously doubt that the Covid vaccine (or booster — whichever you had) triggered the MC reaction. But I do believe that entivio reduced the effectiveness of the vaccine, and that (at least, to some extent), combined with the fact that as we get older, vaccines aren't as effective to begin with, diminished the effectiveness of the Covid vaccine.
But looking at the fact that your reaction started on October 6, according to medical evidence, there should have been no intervention between the covid vaccine and the Entyvio Infusion, leaving the reason for your reaction unexplained. I'm inclined to suspect that BAM is your primary problem, And you need to adjust your dose of Colestipol (or switch to a different bile acid sequestrant). If you're taking the original labeled dose, that's probably your problem. Patients with serious BAM problems usually need serious doses of a bile acid sequestrant in order to get the diarrhea under control, because the dose on the label is for cholesterol suppression (not for treating BAM). Treating BAM is an off label use, requiring an off label dose, usually much higher than the labeled dose.
Since you recently had covid 19, that might complicate the issue if it did trigger an MC reaction. If it did, that would make trying to determine an optimum dose of colestipol difficult (or impossible), until the effect of the Covid exacerbation ended. But if I were in your situation I would at least make an attempt to find a workable dose, and if it couldn't be established, then I would wait 5 or 6 months until the covert influence should be ended, and try again. Some people need at least 3 or 4 times the labeled dose in order to get control of the BAM. But before you sent out to try to find the best dose, read (or reread) the recent MCF newsletter that discusses BAM treatments. For your convenience, here's a direct link where you can read or download a copy of that newsletter:
https://www.microscopiccolitisfoundatio ... r_2025.pdf
Also, note that Entyvio:
- does not affect bile acid production
does not affect bile acid reabsorption in the terminal ileum
does not regulate the FXR/FGF19 bile acid feedback loop
does not change bile acid transporters
So it does not directly improve or worsen classic BAM (Type 1 or Type 2).
I hope this helps.
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.
Re: I'm a mess
Greetings all!
Best of luck Susanne. I am struggling too. I apologize if this place not appropriate to start posting. I was diagnosed mid summer and have been following this wonderful forum for months. Seems the only reputable, professional, knowledgeable place to go. Background: Have CC , insomnia , high anxiety and developed sensitivity to most pharmaceuticals and over the counter meds that worsen tinnitus. You name it, it triggers it. BUD made me psychotic and sometimes suicidal. Clearly permeability issues. I am now a homeopathic by necessity. I follow Gabe’s early elimination diet recommendations. Irregular bowel frequency but no diarrhea unless try something stupid. Off basic 4 and most of next 11 potential issue food types. I follow all of your general vitamin and mineral recommendations. Protein: lamb,turkey, goat,venison , elk and fish sometimes. Not sure if shellfish or jasmine rice is safe yet. Veggies: green beans, carrots, parsnips and low salicylate squash types ( Pepto made tinnitus terrible). No alcohol, smoking etc.
A few weeks ago, developed ALOT of gas with end of intestinal tract feeling like additional lubrication but no fecal leakage. I stopped sweet potatoes and homemade root vegetable based breads which gave me energy. Problem quickly abated. Now , I’m losing weight again. Was 145 lb and very fit .I’ve lost 25 lbs of mostly muscle. Getting scary. Now 120 lbs. not sure this is sustainable for long. Thought about SIBO test . If positive , take Biotic research or Metagenics treatment ( I’ve been poisoned enough with inappropriate antibiotics, like to avoid Rifaximin) . If test is negative then large intestine bacteria issue? what is left seems like slow starvation. Meat and low energy carbs seems all I have left. Feels like I’m on a tight rope coming to a wall.
Any advice would be greatly appreciated ! Thank you all for the terrific guidance so far. Dwight.
Best of luck Susanne. I am struggling too. I apologize if this place not appropriate to start posting. I was diagnosed mid summer and have been following this wonderful forum for months. Seems the only reputable, professional, knowledgeable place to go. Background: Have CC , insomnia , high anxiety and developed sensitivity to most pharmaceuticals and over the counter meds that worsen tinnitus. You name it, it triggers it. BUD made me psychotic and sometimes suicidal. Clearly permeability issues. I am now a homeopathic by necessity. I follow Gabe’s early elimination diet recommendations. Irregular bowel frequency but no diarrhea unless try something stupid. Off basic 4 and most of next 11 potential issue food types. I follow all of your general vitamin and mineral recommendations. Protein: lamb,turkey, goat,venison , elk and fish sometimes. Not sure if shellfish or jasmine rice is safe yet. Veggies: green beans, carrots, parsnips and low salicylate squash types ( Pepto made tinnitus terrible). No alcohol, smoking etc.
A few weeks ago, developed ALOT of gas with end of intestinal tract feeling like additional lubrication but no fecal leakage. I stopped sweet potatoes and homemade root vegetable based breads which gave me energy. Problem quickly abated. Now , I’m losing weight again. Was 145 lb and very fit .I’ve lost 25 lbs of mostly muscle. Getting scary. Now 120 lbs. not sure this is sustainable for long. Thought about SIBO test . If positive , take Biotic research or Metagenics treatment ( I’ve been poisoned enough with inappropriate antibiotics, like to avoid Rifaximin) . If test is negative then large intestine bacteria issue? what is left seems like slow starvation. Meat and low energy carbs seems all I have left. Feels like I’m on a tight rope coming to a wall.
Any advice would be greatly appreciated ! Thank you all for the terrific guidance so far. Dwight.
Re: I'm a mess
Tex,
Thank you for your reply. You gave me a lot of information to digest. I wondered if the Entyvio or the covid vaccine was what triggered this mess. I will up the Colestipol tonight. I can take up to 6 pills. I had been down to 1 pill. The Creon for the EPI, 24,000, is doing absolutely nothing. I had 6 watery D episodes before 8:30 am this morning. I am totally wiped out. My blood pressure is low, and I believe my blood sugar is low, so not a good combination. I'm eating bland. I did lose some weight but it has been just a few lbs. I am just besides myself.
Thank you, Tex!
Susanne
Thank you for your reply. You gave me a lot of information to digest. I wondered if the Entyvio or the covid vaccine was what triggered this mess. I will up the Colestipol tonight. I can take up to 6 pills. I had been down to 1 pill. The Creon for the EPI, 24,000, is doing absolutely nothing. I had 6 watery D episodes before 8:30 am this morning. I am totally wiped out. My blood pressure is low, and I believe my blood sugar is low, so not a good combination. I'm eating bland. I did lose some weight but it has been just a few lbs. I am just besides myself.
Thank you, Tex!
Susanne
Re: I'm a mess
Hi Dwight,
Welcome to the group. Although this isn't the best place to start a new topic, I'll try to help, if I can. Any time you want to start a new topic, look above the list of topics under the Main Message Board (or some other category), for example, and click on the link that says "New topic" (with the pencil icon). The system will open up a new message composing box where you can write your message, and submit it. There's also a similar link below the list of posted topics, that has the same name, and works the same way.
To address your questions: All of us who have the most severe cases lose a lot of weight before we manage to get the disease into remission. Normally, if we stick with the diet, and are very careful that we don't allow it to be contaminated, the inflammation will eventually subside, our digestion will slowly improve, and we will slowly begin to gain back some of the weight we lost. While we are reacting, many of our nutrients are going down the toilet, and it's virtually impossible to gain any weight, so it may help to eat smaller meals (or snacks) more often In order to take in more calories. Meat contains all of the essential amino acids, and is the best source of protein (which is essential for healing), so make sure you try to include protein in every meal or snack. Fatty meat is better than lean meat, as long as we don't overdo the fat. For purposes of healing, only proteins and fat are essential — carbs are strictly optional.
It sounds as though you're on the right track — you may just need more time, to allow your digestive system to recover. I've been where you are, so I understand the hopeless feeling, but patience and perseverance with the diet will eventually pay off, and our health will slowly turn around. And remember, stress directly contributes to inflammation, so the better we can relax, and minimize our stress, the faster we will recover.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Although this isn't the best place to start a new topic, I'll try to help, if I can. Any time you want to start a new topic, look above the list of topics under the Main Message Board (or some other category), for example, and click on the link that says "New topic" (with the pencil icon). The system will open up a new message composing box where you can write your message, and submit it. There's also a similar link below the list of posted topics, that has the same name, and works the same way.
To address your questions: All of us who have the most severe cases lose a lot of weight before we manage to get the disease into remission. Normally, if we stick with the diet, and are very careful that we don't allow it to be contaminated, the inflammation will eventually subside, our digestion will slowly improve, and we will slowly begin to gain back some of the weight we lost. While we are reacting, many of our nutrients are going down the toilet, and it's virtually impossible to gain any weight, so it may help to eat smaller meals (or snacks) more often In order to take in more calories. Meat contains all of the essential amino acids, and is the best source of protein (which is essential for healing), so make sure you try to include protein in every meal or snack. Fatty meat is better than lean meat, as long as we don't overdo the fat. For purposes of healing, only proteins and fat are essential — carbs are strictly optional.
It sounds as though you're on the right track — you may just need more time, to allow your digestive system to recover. I've been where you are, so I understand the hopeless feeling, but patience and perseverance with the diet will eventually pay off, and our health will slowly turn around. And remember, stress directly contributes to inflammation, so the better we can relax, and minimize our stress, the faster we will recover.
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.
Re: I'm a mess
Suzanne,
There's another possibility. I just now noticed that you've been using Entyvio for 3 1/2 years. In many cases our body will develop an allergy to biologic treatments after a few years, and many patients find it necessary to switch to a different treatment. I suggest you read (or reread, if you've already read it) the newsletter that can be read or downloaded at the following link:
https://www.microscopiccolitisfoundatio ... fcb80f.pdf
It might be a good idea to ask your gastroenterologist about this possibility. Hopefully he, or she, will be familiar with the problem, and be able to help you with another treatment, if that should be necessary.
Tex
There's another possibility. I just now noticed that you've been using Entyvio for 3 1/2 years. In many cases our body will develop an allergy to biologic treatments after a few years, and many patients find it necessary to switch to a different treatment. I suggest you read (or reread, if you've already read it) the newsletter that can be read or downloaded at the following link:
https://www.microscopiccolitisfoundatio ... fcb80f.pdf
It might be a good idea to ask your gastroenterologist about this possibility. Hopefully he, or she, will be familiar with the problem, and be able to help you with another treatment, if that should be necessary.
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.
Re: I'm a mess
Hi Tex,
I'm making a little progress. I've upped Colestipol as well as the Creon at dinnertime. Today for the first time in 6 1/2 weeks I had a soft but formed BM. I take 4 Colestipol at bedtime on an empty stomach. I take 4 Creon capsules 12,000 units at breakfast and lunch and 6 Creon capsules 12,000 units at dinnertime and 2 Creon with each snack.
I did ask my GI, through the portal, if taking Entyvio for 3 /12 years could be the problem but I never got an answer. They have me going for another colonoscopy and an endoscopy, it hasn't been scheduled yet. I will see the GI then and will ask that question.
I have some weight to put back on, I only lost 5 lbs. but I'm 5' 6'' so you see the weight loss a lot. I weigh 97 lbs. right now.
Thanks again Tex, I'll keep you posted on my progress.
Thanks,
Susanne
I'm making a little progress. I've upped Colestipol as well as the Creon at dinnertime. Today for the first time in 6 1/2 weeks I had a soft but formed BM. I take 4 Colestipol at bedtime on an empty stomach. I take 4 Creon capsules 12,000 units at breakfast and lunch and 6 Creon capsules 12,000 units at dinnertime and 2 Creon with each snack.
I did ask my GI, through the portal, if taking Entyvio for 3 /12 years could be the problem but I never got an answer. They have me going for another colonoscopy and an endoscopy, it hasn't been scheduled yet. I will see the GI then and will ask that question.
I have some weight to put back on, I only lost 5 lbs. but I'm 5' 6'' so you see the weight loss a lot. I weigh 97 lbs. right now.
Thanks again Tex, I'll keep you posted on my progress.
Thanks,
Susanne
Re: I'm a mess
Thanks for the update. And I hope you continue to improve.
Tex
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.
Re: I'm a mess - an update
Hi Tex,
I wanted to update you and get your feedback. I have undergone an abdominal MRI, colonoscopy and endoscopy. The MRI showed normal results, no problems indicated. This is the results on the colonoscopy and endoscopy:
SURGICAL PATHOLOGY REPORT ------------------------------------------------------------ DIAGNOSIS: A. DUODENUM, BIOPSY: - DUODENAL MUCOSA WITH NO SIGNIFICANT PATHOLOGIC ALTERATION. B. STOMACH, RANDOM, BIOPSY: - GASTRIC OXYNTIC MUCOSA WITH NO SIGNIFICANT PATHOLOGIC ALTERATION. C. COLON, RIGHT COLON, BIOPSY: - COLLAGENOUS COLITIS, SEE NOTE. D. COLON, LEFT COLON, BIOPSY: - COLLAGENOUS COLITIS, SEE NOTE. NOTE: IN ADDTITION TO COLLAGENOUS COLITIS, BOTH THE RIGHT AND LEFT COLON SHOWED PATCHY ACTIVITY AS WELL AS MILD ARCHITECTURAL CHANGES AND PANETH CELL METAPLASIA WITHIN THE LEFT, SUGGESTIVE OF CHRONIC INJURY. CLINICAL CORRELATION TO EXCLUDE BACKGROUND INFLAMMATORY BOWEL DISEASE IS RECOMMENDED.
The colonoscopy/endoscopy was done after 8 weeks of severe watery diarrhea.
Right now I have been taking Creon 36,000 2 with meals, one with snacks and Colestipol at bedtime, 1-2 tablets and my bm's have been consistently #3 on the Bristol chart since a few days after the colonoscopy/endoscopy. So I feel I'm doing okay for now. I'm feeling better but I get tired easily and I'm working on that. I'm still gluten free, casein free, egg free and soy free and I really watch my diet.
Thanks for your input Tex!!
Susanne
I wanted to update you and get your feedback. I have undergone an abdominal MRI, colonoscopy and endoscopy. The MRI showed normal results, no problems indicated. This is the results on the colonoscopy and endoscopy:
SURGICAL PATHOLOGY REPORT ------------------------------------------------------------ DIAGNOSIS: A. DUODENUM, BIOPSY: - DUODENAL MUCOSA WITH NO SIGNIFICANT PATHOLOGIC ALTERATION. B. STOMACH, RANDOM, BIOPSY: - GASTRIC OXYNTIC MUCOSA WITH NO SIGNIFICANT PATHOLOGIC ALTERATION. C. COLON, RIGHT COLON, BIOPSY: - COLLAGENOUS COLITIS, SEE NOTE. D. COLON, LEFT COLON, BIOPSY: - COLLAGENOUS COLITIS, SEE NOTE. NOTE: IN ADDTITION TO COLLAGENOUS COLITIS, BOTH THE RIGHT AND LEFT COLON SHOWED PATCHY ACTIVITY AS WELL AS MILD ARCHITECTURAL CHANGES AND PANETH CELL METAPLASIA WITHIN THE LEFT, SUGGESTIVE OF CHRONIC INJURY. CLINICAL CORRELATION TO EXCLUDE BACKGROUND INFLAMMATORY BOWEL DISEASE IS RECOMMENDED.
The colonoscopy/endoscopy was done after 8 weeks of severe watery diarrhea.
Right now I have been taking Creon 36,000 2 with meals, one with snacks and Colestipol at bedtime, 1-2 tablets and my bm's have been consistently #3 on the Bristol chart since a few days after the colonoscopy/endoscopy. So I feel I'm doing okay for now. I'm feeling better but I get tired easily and I'm working on that. I'm still gluten free, casein free, egg free and soy free and I really watch my diet.
Thanks for your input Tex!!
Susanne
Re: I'm a mess
Thanks for the update. Sounds like the diarrhea is under controls. I hope you continue to heal.
Tex
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.