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Hello,
It's been a long time since I posted on this forum. I started to live with MC 16 years ago and managed to get it under control after about two years by eliminating gluten, soy, and high-fiber foods. [b]This forum helped me more than all the physicians and gastroenterologists together[/b]. In the process, I also weaned myself of high doses of Prednisone. I did have occasional flare-ups but nothing that didn't resolve in a couple of days, at times with the help of an occasional Imodium.
Then, half a year ago, I had a bout of cholecystitis that ended up resulting in chronic pancreatitis and EPI (exocrine pancreatic insufficiency), which is an entirely new experience. Now fat has also dropped out of my diet, and I have been taking Creon with every meal. Five days ago, MC came back with a vengeance, exactly like 16 years ago. I pretty much stopped eating simply because I had zero appetite, focusing mainly on keeping hydrated. But not eating has had no effect on the D -- it just simply turned to water. Lost quite a bit of weight, naturally.
The GP prescribed Budeson 3 mg x 3 every morning, which I took this morning for the first time. Not crazy about it but I don't think I have too many options.
About two weeks ago (a little more than a week before this episode started), to support my damaged pancreas, I started taking anti-inflammatory supplements (curcumin extract + piperine, grape seed extract, and vitamin C) in fairly high doses. Might that have contributed to this flare-up? I stopped all that the day the current flare-up began.
Any insight or suggestion is greatly welcome.
MC returns after more than a decade against background of chronic pancreatitis
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Re: MC returns after more than a decade against background of chronic pancreatitis
Hi Gabriel,
Sorry to learn that you're having a flare. To answer your questions: hopefully the budesonide will promptly bring remission. Assuming that it does, be sure to taper the dose way past one 3 mg capsule per day, To make sure that you don't have a relapse because of the mast cell rebound when the treatment is ended.
Were all different, but yes, it's possible that your supplements may have triggered the relapse, or at least contributed to it. In sensitive individuals, especially when taken in concentrated supplemental forms, rather than from food, those items can have the following effects:
I hope this helps
Tex
Sorry to learn that you're having a flare. To answer your questions: hopefully the budesonide will promptly bring remission. Assuming that it does, be sure to taper the dose way past one 3 mg capsule per day, To make sure that you don't have a relapse because of the mast cell rebound when the treatment is ended.
Were all different, but yes, it's possible that your supplements may have triggered the relapse, or at least contributed to it. In sensitive individuals, especially when taken in concentrated supplemental forms, rather than from food, those items can have the following effects:
- Curcumin extract (turmeric) is anti-inflammatory, but in high doses it can stimulate bile secretion, which can worsen diarrhea for MC patients, and it can cause bloating, nausea, and urgency for some of us. Extracts are much more potent than Ingredients we normally encounter in food.
Piperine (black pepper extract) is known to increase intestinal permeability (leaky gut), and it may irritate the gut lining in people with IBD, especially in high doses.
Grape seed extract contains polyphenols and tannins, which may provide benefits to the gut in general, but they can be irritating to sensitive GI tracts at high concentrations, and may trigger loose stools or bloating in some individuals.
Vitamin C (ascorbic acid) in large doses (such as greater than a thousand milligrams per day) can act as an osmotic laxative, drawing water into the bowel, and can cause diarrhea, cramping, and urgency. Buffered forms may be gentler but still risky if the dose is too high.
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: MC returns after more than a decade against background of chronic pancreatitis
Dear Wayne,
Thank you so much for your answer. You have been a guiding light to me all these years, long after I managed to gradually wean myself off 60 mg of prednisone and was classified as a "success story" on the forum. I read your book cover to cover and countless posts you have uploaded.
I can't believe I made such a stupid mistake as to start all the antioxidants at once. I assumed that anti-inflammatory substances can only be good for the gut. Evidently, I should have introduced them one by one and increased them gradually.
I continue to take probiotics (4B units/day), which I have generally found to help. That should be OK, right?
I have now fallen into a pattern of intense purging between about 3:00-6:30 am (practically continuous D and urges), gradually tapering off until about 1 pm, with only a few outings, and then stopping entirely until 3 am the next morning. In the afternoon and evening, I may experience occasional cramps but nothing serious, and I can eat. Is this a common pattern?
I keep hydrated, trying very hard to stay out of the ER, but I am losing quite a bit of weight. I understand that a five-day course of intravenous steroids can stop the D. Is that something to consider?
Thank you so much for your answer. You have been a guiding light to me all these years, long after I managed to gradually wean myself off 60 mg of prednisone and was classified as a "success story" on the forum. I read your book cover to cover and countless posts you have uploaded.
I can't believe I made such a stupid mistake as to start all the antioxidants at once. I assumed that anti-inflammatory substances can only be good for the gut. Evidently, I should have introduced them one by one and increased them gradually.
I continue to take probiotics (4B units/day), which I have generally found to help. That should be OK, right?
I have now fallen into a pattern of intense purging between about 3:00-6:30 am (practically continuous D and urges), gradually tapering off until about 1 pm, with only a few outings, and then stopping entirely until 3 am the next morning. In the afternoon and evening, I may experience occasional cramps but nothing serious, and I can eat. Is this a common pattern?
I keep hydrated, trying very hard to stay out of the ER, but I am losing quite a bit of weight. I understand that a five-day course of intravenous steroids can stop the D. Is that something to consider?
Re: MC returns after more than a decade against background of chronic pancreatitis
That's a common pattern for someone who has active MC. You appear to be in a classic MC flare. How long have you been taking the probiotics? The American Gastroenterological Association Institute issued new guidelines back in 2015 that reversed their previous position and expressly advised against the use of probiotics when attempting to treat MC. The problem is that although probiotics do benefit a very small percentage of IBD patients, for most of us they make no difference, and for some of us, they trigger diarrhea and prevent us from reaching remission.
You seem to be convinced that supplements are beneficial for MC patients. To the contrary, most of us are way better off if we get most of our nutrients from our food. The only supplements we recommend are the vitamins and minerals that MC (and corticosteroids) deplete, such as vitamin D, magnesium, and vitamin B12. Our food is our medicine. While some of us may be able to tolerate probiotics, enzyme supplements, and inflammation supplements; for most of us, those items either make little to no difference, or they prevent us from reaching remission.
If I were in your situation, I would stop the probiotics, at least for a few days, to see if that helps to slow down the diarrhea. It may or may not make a dramatic difference overnight, because once we're in a flare, it can take a significant amount of time to resolve the flare. But making changes which turn out to be beneficial, usually at least bring noticeable improvements within a few days.
Tex
You seem to be convinced that supplements are beneficial for MC patients. To the contrary, most of us are way better off if we get most of our nutrients from our food. The only supplements we recommend are the vitamins and minerals that MC (and corticosteroids) deplete, such as vitamin D, magnesium, and vitamin B12. Our food is our medicine. While some of us may be able to tolerate probiotics, enzyme supplements, and inflammation supplements; for most of us, those items either make little to no difference, or they prevent us from reaching remission.
If I were in your situation, I would stop the probiotics, at least for a few days, to see if that helps to slow down the diarrhea. It may or may not make a dramatic difference overnight, because once we're in a flare, it can take a significant amount of time to resolve the flare. But making changes which turn out to be beneficial, usually at least bring noticeable improvements within a few days.
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: MC returns after more than a decade against background of chronic pancreatitis
Chronic pancreatitis can shake things up in your gut, so cutting fat and taking Creon is a smart move. Budesonide might help but can take a week or two to kick in. Meanwhile, try eating small portions of easy-to-digest foods (rice, bananas, yogurt), keep taking your enzymes with every bite, and use loperamide if things get too loose.
Re: MC returns after more than a decade against background of chronic pancreatitis
As for the anti-inflammatory supplements, they could have contributed to the flare-up, especially if your body was already under stress from the pancreas issues. Sometimes, supplements like those can irritate the gut. It’s good that you stopped them as soon as the flare-up started, though.
Re: MC returns after more than a decade against background of chronic pancreatitis
Thank you all for the useful answers. I have two additional questions:
1. Is MCT oil safe for us? I use about 1 tablespoon of it a day to replace other types of oil because MCT is "invisible" to the pancreas and doesn't trigger it.
2. When to start LDN? I'd like to stay on Budeson as little as possible because I have glaucoma and steroids increase the pressure in the eye. It appears that LDN may be a good maintenance strategy. But can I start it while I'm on Budeson? How will I titrate the amount and know whether it works if I'm taking it concurrently with the Budeson?
1. Is MCT oil safe for us? I use about 1 tablespoon of it a day to replace other types of oil because MCT is "invisible" to the pancreas and doesn't trigger it.
2. When to start LDN? I'd like to stay on Budeson as little as possible because I have glaucoma and steroids increase the pressure in the eye. It appears that LDN may be a good maintenance strategy. But can I start it while I'm on Budeson? How will I titrate the amount and know whether it works if I'm taking it concurrently with the Budeson?
Re: MC returns after more than a decade against background of chronic pancreatitis
MCT oil can be **safe for some MC patients, but it should be introduced cautiously and in small amounts, especially during active disease phases.
I've never used LDN, so I don't know enough about it to advise you on that. As to how to determine which one is helping if you're taking them concurrently, there is no reliable way. That's why treatments should be trialed one at a time.
Tex
I've never used LDN, so I don't know enough about it to advise you on that. As to how to determine which one is helping if you're taking them concurrently, there is no reliable way. That's why treatments should be trialed one at a time.
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: MC returns after more than a decade against background of chronic pancreatitis
You're doing all the right things by staying hydrated and watching what you eat. I’ve heard from a few folks that sometimes supplements—especially in high doses—can be tricky when your gut is already sensitive, so it’s good you stopped them for now.