Well, it's been almost 2yrs since diagnosis. I just finally went of Entocort after 18 months, major diet mod, failed lialda, and the diarrhea is back to 5x a day. Not going back on Entocort. It has been a waste and never got rid of th diarrhea. I a back to where I started from except that I am hardly eating anything. Anyways, I am going to try Pepto so that I can function. Does anyone know his much I am supposed to take based on those trials that worked?
Thanks! Susie[/list]
Everything has failed....anyone know the pepto protocol?
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Hi Susie,
When I was first diagnose the doctor had me doing 8 chewable tablets a day spread out 2 at a time. At that time I was so bad that it did not help me and I did that for 12 weeks. Maybe since you are following a diet it will work I was not at the time. There are members that were successful and they will probably post. I was also doing loperamide and the dosage varied on how much D.
I hope it works for you!
When I was first diagnose the doctor had me doing 8 chewable tablets a day spread out 2 at a time. At that time I was so bad that it did not help me and I did that for 12 weeks. Maybe since you are following a diet it will work I was not at the time. There are members that were successful and they will probably post. I was also doing loperamide and the dosage varied on how much D.
I hope it works for you!
Denise
Hi Susie,
I'm sorry to hear that nothing is working, because I am well aware of how dedicated you have been at controlling your diet. It seems that sometimes we just can't win.
As Denise mentioned, the Pepto Treatment, as developed by Dr. Fine, was based on 8 tablets (or the equivalent dose) of bismuth subsalicylate per day, for a period of 8 weeks. In his published trials, the average time to remission from D was approximately 2 weeks, and the treatment was effective for 75 % of the patients who finished the trial. No side effects were noted for the trial, so presumably everyone who had side effects dropped out of the trial before it was completed.
Good luck with this, and please keep us posted.
Tex
I'm sorry to hear that nothing is working, because I am well aware of how dedicated you have been at controlling your diet. It seems that sometimes we just can't win.
As Denise mentioned, the Pepto Treatment, as developed by Dr. Fine, was based on 8 tablets (or the equivalent dose) of bismuth subsalicylate per day, for a period of 8 weeks. In his published trials, the average time to remission from D was approximately 2 weeks, and the treatment was effective for 75 % of the patients who finished the trial. No side effects were noted for the trial, so presumably everyone who had side effects dropped out of the trial before it was completed.
Good luck with this, and please keep us posted.
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 Susie,
I understand your pain. I was also diagnosed nearly two yrs ago. No one, except my husband who sees what I eat, can testify to how restricted I've been with diet. I tried Asacol, Imodium, and Pepto without success. I really hope Pepto works for you!
I had improvement with Entocort. After discontinuing it, I did a Candida diet which included only safe foods from my Enterolab results. I ate plain chicken, burgers, pork, turkey, fish, asparagus, broccoli and cauliflower, not much more for four months...AND zero sugar. The D stayed away but I wanted/needed to add more, even carrots would've been nice. I was constantly hungry and not getting enough calories. My physician suggested GAPS diet to expedite the healing of my gut and eventually enable me to add more foods. I plunged into that full force. I couldn't get past the Intro Diet Stage 1, which I did for 15 days- only broth- caused my D to return. What a nightmare. I was adamant to avoid going back on Entocort but nothing stopped the D, even going back to the next-to-nothing diet that had worked for four months didn't do the trick.
My GI says I'm an enigma. She was certain I had Crohn's but after every test she's realized I'm a complex LC case. Entocort is not something she wants me on long term. I'm on Entocort temporarily now, second time ever, and it's only been a week so I'm not sure when it'll change my D. She ordered some blood and stool tests to see if I have a pancreatic autoimmune issue causing my steatorrhea/LC. I have a history of other autoimmune conditions (Hashimotos thyroiditis, Raynaud's syndrome, Celiac disease). As unpopular as it may sound on this forum, I don't believe that diet and mast cells are the only reasons LC may not go into remission. I think various autoimmune diseases, hormones, medicines (even discontinued ones that triggered MC like antibiotics/NSAIDS), Candida, and Lyme Disease can keep MC in a perpetuating cycle. That's my personal thoughts. I'm sure others disagree.
In my experience, if diet alone could heal I'd be in complete remission by now.
Good luck to you and do keep us posted on the Pepto protocol!
I understand your pain. I was also diagnosed nearly two yrs ago. No one, except my husband who sees what I eat, can testify to how restricted I've been with diet. I tried Asacol, Imodium, and Pepto without success. I really hope Pepto works for you!
I had improvement with Entocort. After discontinuing it, I did a Candida diet which included only safe foods from my Enterolab results. I ate plain chicken, burgers, pork, turkey, fish, asparagus, broccoli and cauliflower, not much more for four months...AND zero sugar. The D stayed away but I wanted/needed to add more, even carrots would've been nice. I was constantly hungry and not getting enough calories. My physician suggested GAPS diet to expedite the healing of my gut and eventually enable me to add more foods. I plunged into that full force. I couldn't get past the Intro Diet Stage 1, which I did for 15 days- only broth- caused my D to return. What a nightmare. I was adamant to avoid going back on Entocort but nothing stopped the D, even going back to the next-to-nothing diet that had worked for four months didn't do the trick.
My GI says I'm an enigma. She was certain I had Crohn's but after every test she's realized I'm a complex LC case. Entocort is not something she wants me on long term. I'm on Entocort temporarily now, second time ever, and it's only been a week so I'm not sure when it'll change my D. She ordered some blood and stool tests to see if I have a pancreatic autoimmune issue causing my steatorrhea/LC. I have a history of other autoimmune conditions (Hashimotos thyroiditis, Raynaud's syndrome, Celiac disease). As unpopular as it may sound on this forum, I don't believe that diet and mast cells are the only reasons LC may not go into remission. I think various autoimmune diseases, hormones, medicines (even discontinued ones that triggered MC like antibiotics/NSAIDS), Candida, and Lyme Disease can keep MC in a perpetuating cycle. That's my personal thoughts. I'm sure others disagree.
In my experience, if diet alone could heal I'd be in complete remission by now.
Good luck to you and do keep us posted on the Pepto protocol!
Marie, We do sound similar. I have been doing GAPS since January. I have been treated for candida, SIBO, and take antihistamines for mast cell issues.
My biggest issue right now is my silly throat. I tried duck again tonight after not having it for several months, and I have obviously developed an intolerance. I immediately get a thickness in my throat and sore lymph nodes on the side of my neck. Unfortunately Pepto won't help with that one :(
Thanks for sharing your story.
Susie
My biggest issue right now is my silly throat. I tried duck again tonight after not having it for several months, and I have obviously developed an intolerance. I immediately get a thickness in my throat and sore lymph nodes on the side of my neck. Unfortunately Pepto won't help with that one :(
Thanks for sharing your story.
Susie
You seem to be trying to reinvent the wheel. I don't understand your position. Who do you believe is going to disagree with those statements? Certainly not me. We have always pointed out on this discussion board that every drug that triggers a reaction for someone absolutely must be discontinued and avoided forever, or remission from MC will not be possible for that individual.Marie wrote:As unpopular as it may sound on this forum, I don't believe that diet and mast cells are the only reasons LC may not go into remission. I think various autoimmune diseases, hormones, medicines (even discontinued ones that triggered MC like antibiotics/NSAIDS), Candida, and Lyme Disease can keep MC in a perpetuating cycle. That's my personal thoughts. I'm sure others disagree.
We have pointed out for many years now, that hormone imbalances are a common cause of lack of response to treatment for MC for some women. That's obvious even to many doctors, because of what happens to MC patients if/when they become pregnant. Ditto for Candida overgrowth, because it causes the leaky gut syndrome. Ditto for other autoimmune-type diseases. The symptoms of those diseases have to be controlled or they will increase the odds of developing additional autoimmune-type diseases.
It's a no-brainer that many individuals who have celiac disease, for example, end up with MC if they do not properly treat their celiac issues (by immediately adopting a rigid GF diet, and not cheating). Every autoimmune-type disease increases the risk of developing other autoimmune-type diseases, if the inflammation that causes them is not properly controlled. That has been well-established in medicine for many years. And the more autoimmune-type diseases we develop, the more damage is done to various systems of the body, and the more difficult it becomes to control all the symptoms — and the more difficult it becomes to prevent additional autoimmune-type diseases from developing. But with the proper knowledge and dedication and attention to detail, it is doable.
So I'm baffled and concerned that you seem to be unaware of all this, even though we have discussed these issues many, many times over the years, in an effort to make sure that the information is available to everyone who wants and needs it. All of this information is also covered in detail in my book.
After reading your post, I feel that we have failed you, and I apologize, because you do not seem to have developed an understanding of the many details of the treatment program that most of us on this board follow. This is a very complex disease, and controlling it is extremely difficult, because doing so requires that we do everything right (and nothing wrong). What do we need to do differently, to do a better job of presenting all the information, and making it easier to understand?
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, Susie. I'm in my fifth week of the Pepto protocol. I started out taking two chewables immediately after each meal (which is when I take my vitamins/supplements) and two just before bed. I started getting nauseated after eating in the morning, so now I take the Pepto between meals instead, and that seems to have helped. On the upside, I haven't had any constipation or ringing ears from the Pepto. On the downside...I really can't say for sure how much it's helping, and I probably won't know until I'm done taking it. I feel bloated much of the time, and while I'm definitely not having D with frequency and severity I was before, I still feel far short of "normal" at this point. In fact, some days I don't know if how I'm feeling overall (bloated, fatigued, and just generally unwell) is due to the MC--because I know it can take months to heal fully--or due to the Pepto itself.
It's certainly worth giving it a try. I plan to take it for the full eight weeks unless something suddenly changes for the worse between now and then.
Good luck!
Fiona
It's certainly worth giving it a try. I plan to take it for the full eight weeks unless something suddenly changes for the worse between now and then.
Good luck!
Fiona
This is my first course of treatment. It's still very early days for me; I've only been dealing with MC for the past few months. I immediately eliminated gluten, and casein shortly thereafter, and my EnteroLab results last week showed that gluten and casein are indeed what I'm sensitive to. My GI's physician's assistant called me after a colonoscopy to tell me that I had intraepithelial lymphocytosis which "suggested Microscopic Colitis" but that I was "too young for that," so something else must be the problem, but no opinion as to what else the problem might be. I now know that's a ridiculous notion, as I'm 39 and people of all ages get it. They wanted to put me on Entocort and follow up in two weeks. Instead, I started on the Pepto and cut out the wheat and dairy, as I didn't want to take a steroid drug without even having a firm diagnosis of MC. I will not be going back to that GI, and I've since ordered a copy of my pathology report because I'd like to see exactly what led to the MC non-diagnosis. Prior to that colonoscopy, I was told I had a virus followed by "Post-Infectious IBS," as all the stool tests for C. Diff and whatever else came back negative. The only reason he even performed the colonoscopy was because my older brother had polyps removed before the age of 50, not because he suspected MC. I've since come to realize that "Post-Infectious IBS" is a euphemism for "Good luck with that."
Yep, I just turned 38. My doc wants me on Imuran, so despite my misery, I cancelled the appt I had for tues, and am giving the pepto a go. Eggs, yeast, and soy are other foods you may want to consider eliminating. Lets be n touch. I am pretty certain I need to eliminate my one cup of coffee again. I had done it once and then added back with no difference, but it may be time to try again :( super fun waking up to four kiddos without coffee.
Tex,
While all those other causes/influences of MC have been discussed, I was under the impression that the core emphasis on this forum is that diet is the most important. I wanted Susie to know that there are others in her same position who have not achieved remission through diet alone. I noticed that Susie is a mom of four (I think?) and I can personally understand how difficult it is to feel unwell when you're trying to be a good mom. Her issues hit close to home and touch my heart. The peeps whom get better with primarily changing their diets are very fortunate.
You haven't failed me. You're supportive & informative, and I thank you for that. I simply wish I could figure out how to do everything right and nothing wrong so I could be in long-term remission. I wish remission for everyone on here because MC puts a damper on life.
Sorry Susie, didn't mean to hijack your thread! :-)
While all those other causes/influences of MC have been discussed, I was under the impression that the core emphasis on this forum is that diet is the most important. I wanted Susie to know that there are others in her same position who have not achieved remission through diet alone. I noticed that Susie is a mom of four (I think?) and I can personally understand how difficult it is to feel unwell when you're trying to be a good mom. Her issues hit close to home and touch my heart. The peeps whom get better with primarily changing their diets are very fortunate.
You haven't failed me. You're supportive & informative, and I thank you for that. I simply wish I could figure out how to do everything right and nothing wrong so I could be in long-term remission. I wish remission for everyone on here because MC puts a damper on life.
Sorry Susie, didn't mean to hijack your thread! :-)
---LOL @ Fiona....so true.I've since come to realize that "Post-Infectious IBS" is a euphemism for "Good luck with that.