I am so glad you found this site. It has been the answer to the dreams of so many on here. Everything you write about your symptoms sounds familiar. My tummy hurt when I read it as I revisited my past experiences. The thing that is helping me is taking 8 Pepto Bismols a day and one Cultrelle (probiotic) for 8 weeks. I am currently in week 4 of this regime. I am not cured yet. However, the depression and sadness I have always experienced when in periods of bad D is no longer my daily experience. MC, when not controlled, is so humiliating, it makes normal existence impossible. I was diagnosed a few years ago with MC after 30 years in which the MD's stated it was only IBS. I used to think my MC simply would go into and out of remission. Thanks to this site I now understand that (1) I need to heal my gut with Pepto. (2) diet IS an important part of the solution. It varies slightly for each of us. In my case, raw vegetables are the major irritant. I am also trying to stay away from dairy products and eggs at least until I am healed. Unlike some others, raw nuts in moderation (a handful when I am hungry) don't seem to affect me. what works the best for me are baked sweet potatoes, Balsamic rice, and meat, chicken, turkey, fish, shrimp, scallops. Even under cooked green vegetables affect the D.
If I could cast a spell on some of the gastrointestinal specialists I have visited, I would give them MC for 2 weeks so they could understand how we feel. I had one of them inform me that I did not have MC because I was not underweight! This clown made that statement as he reviewed the MC reading (based on tissue exam from my colonoscopy) and the diagnosis of a fellow gastro MD!
I agree with Zizzle. Gluten-free is very trendy in the USA and I would suspect also in England.
We love helping each other. Please continue to share your experiences. We understand. We have been there. You need to vent and this is the site where it is safe to do so.
Deb
Newbie... First post!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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drdebc
- Adélie Penguin
- Posts: 150
- Joined: Thu Nov 08, 2012 9:15 pm
- Location: On a lake in the N GA mountains
Welcome Sally!
Retired marketing Higher Ed PhD striving to heal myself with a minimal amount of prescription meds.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
Diagnosed w/collagenous MC, Barrett's Esophagus, Celiac, Hypothyroidism.
WELCOME SALLY! 
If you are taking a generic version of Imodium, it's probable that it contains lactose, a dairy component. As far as I know, the only version of dairy and lactose-free Imodium is Imodium AD.
Discouragement is quite common with the ups and downs of this disease. When our treatment is working, we feel terrific, but when we have a step backwards, we can feel defeated. You have finally found a group of people who understand your disease and can help you. You will get better and your discouraged days will become less.
Gloria
If you are taking a generic version of Imodium, it's probable that it contains lactose, a dairy component. As far as I know, the only version of dairy and lactose-free Imodium is Imodium AD.
Discouragement is quite common with the ups and downs of this disease. When our treatment is working, we feel terrific, but when we have a step backwards, we can feel defeated. You have finally found a group of people who understand your disease and can help you. You will get better and your discouraged days will become less.
Gloria
You never know what you can do until you have to do it.
Thanks everyone xx Anyone here also taking Thyroxine?
Thank you all for the replies. I don't know if I can reply personally to each one of you as I can't see how to but sending you all hugs.
I never knew till now how depressing and sad a condition can make you. I have only been diagnosed three weeks ago but have had my symptoms for a few months. I swing from being okay to such deep depths of sadness that I am sure is making it worse. It now seeem's to be effecting everything! We loved to go out for dinner go out for the day and we have a trip planned to go to London next week to see a show, I am really not sure if I can do it.. 1...because of my restricted diet 2...Because of needing the *Loo* as we call it here 3..I seem to have lost all my confidence.
I am waiting for the gastro to call me today as I want to discuss my options for something that can stop the D...I am currently going about 12 times a day although yesterday it was only 3!!!! I am getting concerned that the uptake of my Thyroxine will be compromised due to the D....I bet he won't have any answers for me!
I had wondered if the Pentasa was making the D worse but as I said I only had D 3 times yesterday.
Can I ask a question? *Blushing* asking it but...is it normal to have D that is sort of yellow colour and very smelly?
I used to dream about winning the lotto now its just to do one solid poo! hahahahaha....See I can laugh!
I never knew till now how depressing and sad a condition can make you. I have only been diagnosed three weeks ago but have had my symptoms for a few months. I swing from being okay to such deep depths of sadness that I am sure is making it worse. It now seeem's to be effecting everything! We loved to go out for dinner go out for the day and we have a trip planned to go to London next week to see a show, I am really not sure if I can do it.. 1...because of my restricted diet 2...Because of needing the *Loo* as we call it here 3..I seem to have lost all my confidence.
I am waiting for the gastro to call me today as I want to discuss my options for something that can stop the D...I am currently going about 12 times a day although yesterday it was only 3!!!! I am getting concerned that the uptake of my Thyroxine will be compromised due to the D....I bet he won't have any answers for me!
I had wondered if the Pentasa was making the D worse but as I said I only had D 3 times yesterday.
Can I ask a question? *Blushing* asking it but...is it normal to have D that is sort of yellow colour and very smelly?
I used to dream about winning the lotto now its just to do one solid poo! hahahahaha....See I can laugh!
Spoken to Gastro
Just spoken to Gastro...told me to stop the Pentasa going to try Bismoth? D has been horrific this morning...very very waring. He is desperate for me to take steroids. I had a really bad reaction to steroid injections earlier this year and have been told until I am tested not to take them. Steroids really frighten me....I have a feeling to get this under some sort of control initially I might have to take them in the hope they work..
Sally, most of us have gone through times of odd-colored and foul-smelling stools. As I recall, a yellow color indicates that your food isn't being absorbed very well. Read Tex's comments here http://www.perskyfarms.com/phpBB2/viewt ... light=bile
Bismouth Not available in the UK
Spoken to Gastro...Stop Pentasa clearly not helping..Stop Imodium.. take Buscapan, Codeine Phosphate and a new drug that works on the bile salts?? He has stated that he would never normally try any of these drugs and would go straight to Budesonide....how do you all feel about steroid drugs? Do you think they make a huge difference and stop the symptoms along with a restricted diet? I dont know if I can get this under control with just diet it's clearly going to take ages and the way I have felt today I seem to have lost my coping mechanism.
Hi Sally,
Sorry to see that your symptoms are worse today. Bismuth subsalicylate is the active ingredient in Pepto-Bismol. Dr. Kenneth Fine of EnteroLab developed the "Pepto" treatment about 15 years ago. It consists of taking 8 or 9 Pepto tablets (or the equivalent dose in liquid form) per day, for 8 weeks. Except for those who are are sensitive to some of the ingredients in the med, it is effective in bringing remission in about 85% of cases. Some of us cannot take it, however, because of side effect symptoms.
I might as well warn you in advance, so that you don't worry unnecessarily — the bismuth subsalicylate will turn your stool black. It will also usually deodorize it. And, if you look in the mirror, you will find that it turns the back of your tongue black, also. All of those issues will disappear after you discontinue taking the Pepto, of course.
As Deb mentioned, light-colored stool is common with MC. It's due to the rapid transit (as explained in the discussion for which she provided a link in her post). The bad odor is caused by poor digestion, which leaves undigested sugars/carbohydrates that are subsequently fermented by bacteria in the colon, and as the rotting food is decomposed, the bacteria generate foul-smelling gas, bloating, cramps, etc.
Tex
Sorry to see that your symptoms are worse today. Bismuth subsalicylate is the active ingredient in Pepto-Bismol. Dr. Kenneth Fine of EnteroLab developed the "Pepto" treatment about 15 years ago. It consists of taking 8 or 9 Pepto tablets (or the equivalent dose in liquid form) per day, for 8 weeks. Except for those who are are sensitive to some of the ingredients in the med, it is effective in bringing remission in about 85% of cases. Some of us cannot take it, however, because of side effect symptoms.
I might as well warn you in advance, so that you don't worry unnecessarily — the bismuth subsalicylate will turn your stool black. It will also usually deodorize it. And, if you look in the mirror, you will find that it turns the back of your tongue black, also. All of those issues will disappear after you discontinue taking the Pepto, of course.
As Deb mentioned, light-colored stool is common with MC. It's due to the rapid transit (as explained in the discussion for which she provided a link in her post). The bad odor is caused by poor digestion, which leaves undigested sugars/carbohydrates that are subsequently fermented by bacteria in the colon, and as the rotting food is decomposed, the bacteria generate foul-smelling gas, bloating, cramps, etc.
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.
Sally,
The Buscapan is an antispasmotic, which is designed to help relieve cramps due to intestinal spasms. It's primarily an IBS drug, but it might help if you are having cramps. Taking codeine (or any other narcotic) to treat MC is almost always a bad idea, because while it masks the pain, it can lead to much more serious troubles that may remain hidden until they become life-threatening.
Budesonide is the indicated treatment for MC, for anyone who wants to take a medication. It is generally the safest, effective treatment that your doctor can offer. It won't prevent the inflammation from developing (only diet changes can do that), but it can mask the symptoms so that you will feel much better while you are waiting for the diet changes to take effect.
Tex
The Buscapan is an antispasmotic, which is designed to help relieve cramps due to intestinal spasms. It's primarily an IBS drug, but it might help if you are having cramps. Taking codeine (or any other narcotic) to treat MC is almost always a bad idea, because while it masks the pain, it can lead to much more serious troubles that may remain hidden until they become life-threatening.
Budesonide is the indicated treatment for MC, for anyone who wants to take a medication. It is generally the safest, effective treatment that your doctor can offer. It won't prevent the inflammation from developing (only diet changes can do that), but it can mask the symptoms so that you will feel much better while you are waiting for the diet changes to take effect.
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.
Sally,
I'm quite sure that Pepto-Bismol is available in the UK. Here's a link to a NHS website that discusses it's uses:
http://www.nhs.uk/medicine-guides/pages ... pto-Bismol
The bile acid sequestrants are helpful for some people, but they cause cramps for others.
If you will look in my book, you will find that all these drugs and their effectiveness are discussed. Look in chapters 4 and 5. It should answer all your questions about any drugs prescribed to treat this disease.
Tex
I'm quite sure that Pepto-Bismol is available in the UK. Here's a link to a NHS website that discusses it's uses:
http://www.nhs.uk/medicine-guides/pages ... pto-Bismol
The bile acid sequestrants are helpful for some people, but they cause cramps for others.
If you will look in my book, you will find that all these drugs and their effectiveness are discussed. Look in chapters 4 and 5. It should answer all your questions about any drugs prescribed to treat this disease.
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 Tex for the info....Think the drug he has suggested is called Cholestyramine? The other drug that he suggested he called it *Bismouth* I guess thats not the same as pepto bismal. Will check out the book again I have also ordered a hard copy as the one I read is on my kindle. Tex did you ever take any drugs that helped?
Sally
x
Sally
x
Cholestyramine is a bile acid sequestrant. It is designed for people who have recently had their gallbladder removed. When the gallbladder is removed, then the liver dumps bile into the duodenum constantly, rather than only making it available when a meal is being digested. For most people, this causes D, until the body learns how to adapt (which usually takes roughly 6 months). Cholestyramine works on the theory that D is caused by excess bile in the fecal stream, and by binding the bile salts, they will be unable to cause D.
When your doctor says "Bismuth", he's referring to bismuth subsalicylate, which is the active ingredient in Pepto-Bismol. Pepto is bismuth subsalicylate with a few dyes and flavorings added.
My symptoms began about 13 or 14 years ago, and they became debilitating about 12 years ago, so that's when I first went to see a doctor about it. Back then, I wasn't even aware that any drugs were available to treat it. So no, I've never taken any meds to treat MC. I did start taking glucosamine sulphate and flax seed oil, to help reduce the arthritis symptoms that started showing up along with the GI symptoms, but the only thing I did to prevent all the symptoms from redeveloping, was to change my diet. It took me a year and a half to figure out all the foods that I needed to avoid, because I wasn't aware of the EnteroLab tests, either.
Tex
When your doctor says "Bismuth", he's referring to bismuth subsalicylate, which is the active ingredient in Pepto-Bismol. Pepto is bismuth subsalicylate with a few dyes and flavorings added.
My symptoms began about 13 or 14 years ago, and they became debilitating about 12 years ago, so that's when I first went to see a doctor about it. Back then, I wasn't even aware that any drugs were available to treat it. So no, I've never taken any meds to treat MC. I did start taking glucosamine sulphate and flax seed oil, to help reduce the arthritis symptoms that started showing up along with the GI symptoms, but the only thing I did to prevent all the symptoms from redeveloping, was to change my diet. It took me a year and a half to figure out all the foods that I needed to avoid, because I wasn't aware of the EnteroLab tests, either.
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 SallyB,
Yes, you are correct, in the USA this drug is known as Entocort CR (the CR suffix indicating it as a Controlled Release drug)
The active ingredient in Entocort CR is a steroid called Budesenide. Budesenide itself is very inexpensive -- and is also used fairly commonly in other medications for upper airway inflammations and certain pulmonary conditions.
The unique part of Entocort CR is not the active ingredient itself, but the unique part is it’s “delivery system”, meaning the way the whole capsule is designed and built (or constructed). The ECR capsule is constructed in such a way that the active ingredient – which is the steroid budesenide – is NOT release into the body until the capsule reaches the lower part of the small intestine. Therefore, this delayed release occurs where it’s primary action is desired, and is more or less localized to that area. This means that the anti-inflammatory action of Entocort CR is rather limited to the lower 1/3 of the small intestine and the colon.
Since the area of release of this steroid is limited to basically the “lower tract” of the GI tract, the area available for absorption of the Budedenide is of course very limited, therefore the absorption of the steroid ingredient into the body is kept at a minimal level. So if one is concerned about amount of systemic absorption of the steroid, they would want to stick to this particular medication because of it's limited absorption characteristic -- which is due to the way the capsule is constructed.
Entocort has been a sanity saver for many here on this chat list. Most do very well with it and it is generally very well tolerated.
But generally tolerated does not mean the same as universally tolerated! So it may not be a good drug for you?
Keep us posted on what yout decsions.
Gayle
Your's is an interesting dilemma. Only you, and the Dr who said you should "never take a steroid again", can really know what your reaction to that injection was, and therefore be able to hopefully make any kind of sound judgement on whether or not Entocort would be a wise choice for you -- in your specific situation.Think you call it Entocort in USA.....?
Yes, you are correct, in the USA this drug is known as Entocort CR (the CR suffix indicating it as a Controlled Release drug)
The active ingredient in Entocort CR is a steroid called Budesenide. Budesenide itself is very inexpensive -- and is also used fairly commonly in other medications for upper airway inflammations and certain pulmonary conditions.
The unique part of Entocort CR is not the active ingredient itself, but the unique part is it’s “delivery system”, meaning the way the whole capsule is designed and built (or constructed). The ECR capsule is constructed in such a way that the active ingredient – which is the steroid budesenide – is NOT release into the body until the capsule reaches the lower part of the small intestine. Therefore, this delayed release occurs where it’s primary action is desired, and is more or less localized to that area. This means that the anti-inflammatory action of Entocort CR is rather limited to the lower 1/3 of the small intestine and the colon.
Since the area of release of this steroid is limited to basically the “lower tract” of the GI tract, the area available for absorption of the Budedenide is of course very limited, therefore the absorption of the steroid ingredient into the body is kept at a minimal level. So if one is concerned about amount of systemic absorption of the steroid, they would want to stick to this particular medication because of it's limited absorption characteristic -- which is due to the way the capsule is constructed.
Entocort has been a sanity saver for many here on this chat list. Most do very well with it and it is generally very well tolerated.
But generally tolerated does not mean the same as universally tolerated! So it may not be a good drug for you? Keep us posted on what yout decsions.
Gayle