So, it has been over a year since my latest flare began. I have been on a gluten free, low fiber, low sugar, low fat, low fun diet for this year, and have been gluten free for about 15 years. Name a drug and I have been on it, except for Viberzi. This past year I have had three courses of budesonide and have stopped taking any other medications. Tramadol was giving me increased diarrhea, imagine. I have been keeping a food journal for about a year and have modified my diet after any reaction. This is after completing an elimination diet, twice. Currently I am taking 2- and up to 8 Lomotil a day. I have 3-5 loose, Bristol #5 poops. Sometimes I have what I call a “download” that are horrible and seem to be associated with fat in my diet.
BUT———-despite all these efforts, I am not better. There are times I do not hurt, but mainly my belly feels like it is burning. I have recently had an endoscopy and am scheduled for another colonoscopy in a couple weeks. I really like my GI doctor because she doesn’t just throw drugs at my symptoms. She wants proof of active disease. I am also thinking my diet has way less to do with my gut than I think. If it was ALL diet, I should be feeling better. If there was something else causing my symptoms other than gluten, fats, sugars, additives, preservatives, fiber, dairy, and red meat, I have not found the culprit. I hesitate, along with my GI to take budesonide long term because of the potential for further bone loss. I took high doses of prednisone circa 2005 which resulted in osteoporosis. Back then I took 80mg/day for about 9 months. Budesonide is “better”, but even at low doses it can be a problem. Except for lomotil daily and acetaminophen, diphenhydramine, and loratidine, As needed, I am on no medications.
I don’t want to be rude, but please don’t give me dietary suggestions. Except for going back on a liquid supplement diet, I really have tried it all. I have been working on figuring out what is causing my problems for over 15 years. If it might work, I have tried it. This past year is different and won’t end. I really believe my current problem of diarrhea and pain are NOT diet related. I have tried eating random types of food in the last couple weeks, that in the past seemed to cause problems and have had at best, only mild reactions.
Soooooo, thoughts? GI did mention Bile Acid Malabsorption, but until the next colonoscopy she doesn’t want to treat this. Pretty sure if she finds MC active, she will recommend budesonide long term despite any negatives. Unfortunately all this diagnosing takes time. But, if anyone out there has been dealing with MC on a long term basis and has any suggestions, please. :)
Despite diet changes and medications symptoms continue
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Despite diet changes and medications symptoms continue
"You First, then me"
Hi Janet.
I don't have a lot of advice for you but I wanted to at least send you my sympathy AND kudos for all you have tried thus far to improve the situation. You certainly seem to have done it all, and I totally feel and understand your frustration. For a great deal of my life, dealing with various health issues, when I'm defeated and beat up I ask the Universe, "What more do you want from me? I'm doing everything right and it's still going wrong!" I see you're at that point now and I'm so sorry.
I definitely won't suggest any other tweaks to your diet because I know how frustrating that is to hear. Do you have your gallbladder? if not, then you may want to try cholestyramine powder. I gave it a shot - it didn't work for me but that may very well be because I still have my gallbladder and from what I understand it's more helpful for those who don't.
Right now I'm on a trial course of 6MP (mercaptopurine) which is actually a chemo/anti-rejection drug, but I'm taking it in low doses for my colitis. It's too soon to tell if it's going to work for me or not but if it does then maybe I can finally get totally off Budesonide, which is the only thing that really has worked for me. I, too, have osteoporosis so my doc desperately wants me off the budesonide.
Right now I'm eating a high fat, low carb diet which really helps me with a lot of my other health issues and it might be helping my colitis, too, because right now I think I'm actually constipated. I don't know for sure because it's certainly not something that's ever happened to me before so I'm not sure what that feels like!
You are committed and dedicated to finding what works for you so I'm sure you eventually will, keep up the fight and don't let this defeat you.
Sue
I don't have a lot of advice for you but I wanted to at least send you my sympathy AND kudos for all you have tried thus far to improve the situation. You certainly seem to have done it all, and I totally feel and understand your frustration. For a great deal of my life, dealing with various health issues, when I'm defeated and beat up I ask the Universe, "What more do you want from me? I'm doing everything right and it's still going wrong!" I see you're at that point now and I'm so sorry.
I definitely won't suggest any other tweaks to your diet because I know how frustrating that is to hear. Do you have your gallbladder? if not, then you may want to try cholestyramine powder. I gave it a shot - it didn't work for me but that may very well be because I still have my gallbladder and from what I understand it's more helpful for those who don't.
Right now I'm on a trial course of 6MP (mercaptopurine) which is actually a chemo/anti-rejection drug, but I'm taking it in low doses for my colitis. It's too soon to tell if it's going to work for me or not but if it does then maybe I can finally get totally off Budesonide, which is the only thing that really has worked for me. I, too, have osteoporosis so my doc desperately wants me off the budesonide.
Right now I'm eating a high fat, low carb diet which really helps me with a lot of my other health issues and it might be helping my colitis, too, because right now I think I'm actually constipated. I don't know for sure because it's certainly not something that's ever happened to me before so I'm not sure what that feels like!
You are committed and dedicated to finding what works for you so I'm sure you eventually will, keep up the fight and don't let this defeat you.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Hi Janet,
Sorry that you're having to deal with a case that seems to ignore treatment. I agree with you, it's certainly time to look for other causes, because something is obviously frustrating your valiant efforts to reach remission. I hope your GI specialist will look for any parasites or bacterial issues. The stomach symptoms could be associated with an H. pylori infection/overgrowth (which can be tough to diagnose accurately). It's probably not due to histamine issues, because itching and hives or rashes would be obvious in that situation. Hopefully the tests your doctor runs will provide some clues.
Tex
Sorry that you're having to deal with a case that seems to ignore treatment. I agree with you, it's certainly time to look for other causes, because something is obviously frustrating your valiant efforts to reach remission. I hope your GI specialist will look for any parasites or bacterial issues. The stomach symptoms could be associated with an H. pylori infection/overgrowth (which can be tough to diagnose accurately). It's probably not due to histamine issues, because itching and hives or rashes would be obvious in that situation. Hopefully the tests your doctor runs will provide some clues.
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.
Hi! My daughter has been sick for 3 years now, abdominal pain going back about that long, but actual MC symptoms didn't really start and a LC dx until the end of 2017 (celiac dx in 2016 but a normal EGD in early 2017 indicating good gf compliance). We actually see an IBD specialist tomorrow (after 6 months of delays and 2 other gastros trying to help but insisting we need to see a specialist ...) So I keep researching ...
My head hurts because of how much I've pounded it against the wall while dealing with the "parts-is-parts" attitude of modern medicine. Our doctors currently include an immunologist, at that visit they wanted to focus on "one" problem - Thyroid? PCOS? (see an endo) LC? (see a gastro) Painful joints? (see a rheumy) Vision problems (see a neuro) etc. and I said she doesn't have many problems, she has one problem and it's the immune system!
Anyway, lymphocytes in LC are part of the immune system's efforts at keeping foreign invaders at bay. The GI tract is particularly tricky because food is foreign so the immune system must be able to ignore most of it while keeping vigilant for things like e. coli.
A lot of recent research into the role of Regulatory T Lymphocytes (Tregs) and how they are needed to maintain "tolerance". There is a careful balance of inflammatory and anti-inflammatory (Treg) cells. When this balance is tipped one way, autoimmune disorders happen, the other way may result in cancers.
Current treatments such as 6-MP (some people have a gene defect that can't metabolize it) and methotrexate are used to reduce the total amount of lymphocytes created, essentially starving the body of lymphocytes, but a bit of a sledgehammer approach as anti-inflammatory as well as inflammatory cells are reduced. The drugs are originally used (at much higher dosages) for overproduction in lymphocyte cancers. TNF-alpha inhibitors try to suppress the pro-inflammatory chemical signaling that promotes an inflammatory reaction. They are called steroid-sparing immunosuppressants because when they work, steroids can be avoided. Steroids suppress the immune system in general.
I am now wondering if autoimmune and autoinflammatory disorders are a result of something I'm going to call "Regulatory T Lymphocyte Depletion Syndrome". The immune system can't generate enough Tregs to moderate the pro-inflammatory action. Symptoms can wax and wane depending on how much the immune system is stimulated and how fast Tregs can be replenished.
A lot of research has been done only in the last 10 years or so, many doctors have never even seen this stuff. Genes such as FOXP3 and IL-10 variants, probiotics such as L. Reuteri, alternative over-the-counter items (Resveratrol). Also, I'm hearing good things about LDN therapy, how it seems to calm the immune system down, so we've started looking into that as a possible therapy.
My head hurts because of how much I've pounded it against the wall while dealing with the "parts-is-parts" attitude of modern medicine. Our doctors currently include an immunologist, at that visit they wanted to focus on "one" problem - Thyroid? PCOS? (see an endo) LC? (see a gastro) Painful joints? (see a rheumy) Vision problems (see a neuro) etc. and I said she doesn't have many problems, she has one problem and it's the immune system!
Anyway, lymphocytes in LC are part of the immune system's efforts at keeping foreign invaders at bay. The GI tract is particularly tricky because food is foreign so the immune system must be able to ignore most of it while keeping vigilant for things like e. coli.
A lot of recent research into the role of Regulatory T Lymphocytes (Tregs) and how they are needed to maintain "tolerance". There is a careful balance of inflammatory and anti-inflammatory (Treg) cells. When this balance is tipped one way, autoimmune disorders happen, the other way may result in cancers.
Current treatments such as 6-MP (some people have a gene defect that can't metabolize it) and methotrexate are used to reduce the total amount of lymphocytes created, essentially starving the body of lymphocytes, but a bit of a sledgehammer approach as anti-inflammatory as well as inflammatory cells are reduced. The drugs are originally used (at much higher dosages) for overproduction in lymphocyte cancers. TNF-alpha inhibitors try to suppress the pro-inflammatory chemical signaling that promotes an inflammatory reaction. They are called steroid-sparing immunosuppressants because when they work, steroids can be avoided. Steroids suppress the immune system in general.
I am now wondering if autoimmune and autoinflammatory disorders are a result of something I'm going to call "Regulatory T Lymphocyte Depletion Syndrome". The immune system can't generate enough Tregs to moderate the pro-inflammatory action. Symptoms can wax and wane depending on how much the immune system is stimulated and how fast Tregs can be replenished.
A lot of research has been done only in the last 10 years or so, many doctors have never even seen this stuff. Genes such as FOXP3 and IL-10 variants, probiotics such as L. Reuteri, alternative over-the-counter items (Resveratrol). Also, I'm hearing good things about LDN therapy, how it seems to calm the immune system down, so we've started looking into that as a possible therapy.
Hi Janet,
I do not take any drugs at all, not even my migraine med (this is three years in the making) I've gotten to the point that it makes me feel worse taking 1 pill than dealing with a little bit of pain that I know is magnesium related so I work hard to account for the loss of mineral and go from there.
I digress....when I plateaued I tried Cholestyramine only because I saw yellow coloring with my stool bathroom trips (due to bile not digesting and aborbing as it made its way through my system)....at this point I think I would have given myself a better ride if I had started taking the Betaine HCL to increase my stomach acid, and the Silver Solution (rxsilver.com) to start the process of removing any unwanted bad bacteria, virus, fungi, mold, candida yeast or pathogen, at the same time I introduced Saccromyeces Boulardii (a natural yeast probiotic) to help my good bacteria thrive again and yes I've felt some toxin/cell removal leave my body, I just allow it to happen and go with the flow of how it chooses to leave, it is a process but I am feeling better. When I behave with my safe foods I am actually having bristol 4 and 5 with this protocol. I almost don't have to take a daily antihistamine this year, I thought I was going to be able to discontinue this but had to start taking an every other morning antihistamine just recently, the Summer must be annoying me a bit more than Spring did.
Today 3 months later after being on the Betaine/Nano Silver/S Boulardii protocol I am feeling better than I have in a long time. Since you want to research another area beyond food related perhaps this area could be of help to you now.
Remember we all get 'into' things that disagree with us, I even have a 'download' day from time to time, but they pass, and I move on knowing it isn't a daily occurance. Good days outweigh the bad now.
I do not take any drugs at all, not even my migraine med (this is three years in the making) I've gotten to the point that it makes me feel worse taking 1 pill than dealing with a little bit of pain that I know is magnesium related so I work hard to account for the loss of mineral and go from there.
I digress....when I plateaued I tried Cholestyramine only because I saw yellow coloring with my stool bathroom trips (due to bile not digesting and aborbing as it made its way through my system)....at this point I think I would have given myself a better ride if I had started taking the Betaine HCL to increase my stomach acid, and the Silver Solution (rxsilver.com) to start the process of removing any unwanted bad bacteria, virus, fungi, mold, candida yeast or pathogen, at the same time I introduced Saccromyeces Boulardii (a natural yeast probiotic) to help my good bacteria thrive again and yes I've felt some toxin/cell removal leave my body, I just allow it to happen and go with the flow of how it chooses to leave, it is a process but I am feeling better. When I behave with my safe foods I am actually having bristol 4 and 5 with this protocol. I almost don't have to take a daily antihistamine this year, I thought I was going to be able to discontinue this but had to start taking an every other morning antihistamine just recently, the Summer must be annoying me a bit more than Spring did.
Today 3 months later after being on the Betaine/Nano Silver/S Boulardii protocol I am feeling better than I have in a long time. Since you want to research another area beyond food related perhaps this area could be of help to you now.
Remember we all get 'into' things that disagree with us, I even have a 'download' day from time to time, but they pass, and I move on knowing it isn't a daily occurance. Good days outweigh the bad now.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
So sorry nothing is working for you. I can relate- I was dx with mc in 2007 and after dietary changes primarily started in 2011, I have not found the answer. Same as you, if it’s out there, I’ve tried it. It wouldn’t hurt to try viberzi. I got samples from my GI. I didn’t care for the possible side effects listed but I wanted relief. It actually made me worse. Go figure.
I’m back on entocort again and the results aren’t that great but it has helped with constant feeling of needing to go. I meet my GI again in a couple weeks. I’m sure the visit won’t shed light on anything new.
It’s very frustrating. I continue to watch what I eat but I am skeptical if I will ever find what may help. But that doesn’t mean I won’t keep trying. :)
I hope you find some answers.
I’m back on entocort again and the results aren’t that great but it has helped with constant feeling of needing to go. I meet my GI again in a couple weeks. I’m sure the visit won’t shed light on anything new.
It’s very frustrating. I continue to watch what I eat but I am skeptical if I will ever find what may help. But that doesn’t mean I won’t keep trying. :)
I hope you find some answers.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Janet,
Sending you warm healing wishes. I certainly don't have any answers, but I did want to offer that I am on a trial of low-dose oral methotrexate. It was a hard decision to make, but after Entocort and Prednisone were not options for me, my doctor started talking about methotrexate. I'm being treated at Brigham and Womens and my doctor tells me they've seen a fair amount of success with this drug. It's still too early for me to tell. Every treatment choice is so personal, but I'd be happy to share MY own experience if you have any questions (feel free to drop me a direct message).
Take Care,
Lisa
Sending you warm healing wishes. I certainly don't have any answers, but I did want to offer that I am on a trial of low-dose oral methotrexate. It was a hard decision to make, but after Entocort and Prednisone were not options for me, my doctor started talking about methotrexate. I'm being treated at Brigham and Womens and my doctor tells me they've seen a fair amount of success with this drug. It's still too early for me to tell. Every treatment choice is so personal, but I'd be happy to share MY own experience if you have any questions (feel free to drop me a direct message).
Take Care,
Lisa
Hi Janet,
I'm so sorry to hear about your troubles and how much pain you are in. That must be awful, especially since you've tried so much. I have the burning tummy, too. It has gotten much better, though, with a combination of things. I don't know if you've tried any of these, but I can only give you what has worked for me.
Just like Erica said, Saccromyeces Boulardii is something that has helped me. My GI prescribed it right away when I was diagnosed and it totally stopped the diarrhea. And when I say stopped, I mean stopped. I take one 200mg pill per day and, unless I eat something I shouldn't (or too much coffee
), I have Bristol 3-5's. No urgency or watery stools for me (except on heavy coffee days)!
I've recently started using LDN (Low-Dose Naltrexone) and am having a drastic improvement with the non-GI symptoms of my MC, like brain-fog, fatigue, and joint pain. It's even helped me sleep better.
I am also starting (on Tex's sage advice) today to supplement with magnesium and D3 to help with residual nocturnal burning pain, which still routinely wakes me up at 3ish am.
(This is diet-adjacent, but not about what you eat, so I think it's ok??) Another thing I've noticed is that when I eat smaller, regular meals, the burning in my tummy is less. If I eat a big meal or wait too long to eat, the burning gets unbearable. I try and schedule my meals if at all possible and I never, ever, eat within 2 hours of sleeping, or the nocturnal pain comes earlier.
Please let us know if we can be of any more help. I hope you'll find your answer soon.
I'm so sorry to hear about your troubles and how much pain you are in. That must be awful, especially since you've tried so much. I have the burning tummy, too. It has gotten much better, though, with a combination of things. I don't know if you've tried any of these, but I can only give you what has worked for me.
Just like Erica said, Saccromyeces Boulardii is something that has helped me. My GI prescribed it right away when I was diagnosed and it totally stopped the diarrhea. And when I say stopped, I mean stopped. I take one 200mg pill per day and, unless I eat something I shouldn't (or too much coffee
), I have Bristol 3-5's. No urgency or watery stools for me (except on heavy coffee days)!I've recently started using LDN (Low-Dose Naltrexone) and am having a drastic improvement with the non-GI symptoms of my MC, like brain-fog, fatigue, and joint pain. It's even helped me sleep better.
I am also starting (on Tex's sage advice) today to supplement with magnesium and D3 to help with residual nocturnal burning pain, which still routinely wakes me up at 3ish am.
(This is diet-adjacent, but not about what you eat, so I think it's ok??) Another thing I've noticed is that when I eat smaller, regular meals, the burning in my tummy is less. If I eat a big meal or wait too long to eat, the burning gets unbearable. I try and schedule my meals if at all possible and I never, ever, eat within 2 hours of sleeping, or the nocturnal pain comes earlier.
Please let us know if we can be of any more help. I hope you'll find your answer soon.
Kind Thoughts,
Liz
Liz