I am so glad I found this site...

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sarkin
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Post by sarkin »

Tex, I could kiss you for saying this. This is the way my mind works (with the occasional pang of guilt). I think your 'dosing' recommendations are highly appropriate, and would absolutely do the job.

I bet a lot of other 'nuisance' diseases also involve 'discomfort' - that charming euphemism for pain that's bad enough to make us seek medical attention. We can handle smacking our fingers with a hammer without calling 911; we certainly don't seek care for what a typical person would call discomfort. (I say, 'It's so cute you guys call it that,' when a doctor uses that word with me.)

Sara
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tictax707
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Post by tictax707 »

If only they could feel the pain. As well as the psychological battles we face as well - the loss of control, frustration, confusion, etc.

But I am not sure if I said it yet, Tex - I love the Albert Einstein quote. It's going up on my fridge, right now.
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sarkin
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Post by sarkin »

Tictax,

Is that avatar picture your pup? Because that looks like an awesome "all-natural" pain reliever right there!

Mine's snoozing right here at the moment...

Sara
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tictax707
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Post by tictax707 »

I wish it was my puppy...! I have been pondering getting one actually for a while. They say pets are so good for your soul...
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sarkin
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Post by sarkin »

Pets sure are good for the soul, and the heart and the body. The first few weeks with our rescue pup were a giant adjustment. He was a much bigger handful than our previous dog - young and foolish and lived way too long in a shelter and no attention span or manners, bursting with energy and without a lick of training... The cats may never forgive us, but three years later he's the heart and soul of this operation. Since I've been sick my husband has been doing more than his fair share of the dog-walking, but as I've been stepping back into my duties, I'm reminded how great it is to be out and about with him. Dogs are such an icebreaker with people, maybe especially in an urban environment like ours.

Lots of our warmest friendships among our neighbors were formed in the dog park. And that helps a lot, because we all trade dog-sitting favors. It's a lot of work - if I were sick and single with a young dog who needs a ton of exercise just to be sane, I'd have a problem on my hands ;)

He thinks it's time we went to bed ;)

Sara
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Zizzle
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Post by Zizzle »

Hi TicTax!
Just wanted to say that I stopped eating gluten, dairy, soy and yeast 7 months ago. The response to cutting gluten was remarkable, but other sensitivities surfaced after a while. As I've improved, I've been able to re-introduce yeast (Udi's bread and bagels, peeled grapes and other fruit), and GF soy sauce (hydrolyzed/fermented soy). I can also eat dark chocolate and other foods with small amounts of soy lecithin and soybean oil, so at least in my case, the soy reaction seems to be dependent on the size of the dose. As far as gut irritants, I can eat a salad here and there, and I'm able to tolerate citrus better now. But one careless diet move or stressful event and the D comes raging back (temporarily). I so hoped for total remission, but there are many land mines along the way! I'm just happy to have my life back, even with soft piles and occasional D in the toilet.
ant
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Post by ant »

Dear Tictax!

Just wanted to say welcome from Hong Kong. :flowersmiley:

I agree with the observation that MC is often even more complicated (food intolerance-wise) than Celiac. IMHO refectory Celiacs are refectory because of intolerances, beyond gluten, either in the small and/or large intestines.....of course, if in the large intestines, that can result in a Dx of MC.

Hope you will find your path to remission illuminated by the PP. Best of luck on your journey.

Ant
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"Softly, softly catchee monkey".....
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Post by tictax707 »

Hi Ant & Zizzle! Thank you for the welcome and your stories. It definitely gives me hope and comfort. I am feeling a bit better now, and have appts with docs lined up. It feels good to have some sort of action or plan to take. We'll see if any of them pan out.

It's tough sometimes when I have a flare up like this because I feel like I can't eat ANYthing and I somehow afraid that my food choices will become narrower and narrower over my lifetime, until I am painted into this corner where I can't enjoy food anymore. (I know - worrying about way more than I need to) But on the other hand, when I have my head out of the water and I am healthy, it really feels better to just ditch an ingredient than try to struggle in with it. Why bother with a food that causes me distress? In that way I AM actually enjoying food more and maintaining my health. Funny how the mind works in different situations...
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fudette
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hope

Post by fudette »

I, too am glad I found this site. I was recently diagnosed with lymphocytic colitis. My dr. prescribed pepto bismol 2 tabs 4x a day initially. This helped just a little bit but then got worse after about a week. He then prescribed Lialda 2 pills once a day and Atropine 1 pill 2 x day. That seemed to be working a bit for about a week and I actually went out with my husband on the weekend. Unfortunately, the d started up again. Bad enough where it was keeping me up at night for the last couple of nights. I contacted my dr. and he just prescribed entocort which I will pick up tomorrow. I took a quick look on the internet about it and am feeling a bit apprehensive because of some of the side effects. I'm going to try it and see what happens and keep my fingers crossed.

One important thing my dr. has not discussed with me is diet. Browsing around on here I am hoping to get some ideas to help keep my symptoms under control a lot better by becoming more aware of any food triggers. I have cut caffeine and am keeping my fat intake to a minimum and will hopefully find some relief. I realize that it is trial and error but eventually I'm confident that I'll find a way to "live" that will be relatively symptom free.
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tex
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Post by tex »

Hi Fudette,

Welcome aboard. Were you having problems with bradycardia? Yours is the first case that I've heard of where a doctor prescribed atropine concurrently with Liallda.

Entocort is arguably the most effective, relatively "safe" medication available for treating MC. Unless you happen to be sensitive to it, adverse side effects are usually a minimal risk. For most people, Entocort is far less likely than the other corticosteroids, to cause adverse side effects.

Most GI specialists believe that diet has nothing to do with microscopic colitis, so that is probably why he didn't mention it.

Despite the fact that most doctors and the major medical web sites advise patients with MC to avoid coffee, and other sources of caffeine, we have found that it has no noticeable effect on our symptoms. IOW, caffeine causes some people in the general population to have D, and for those individuals, if they develop MC, then yes, caffeine will still cause them to have D. For the rest of us, though, if caffeine didn't bother us before we had MC, it doesn't seem to bother us after we have the disease, either.

Again, welcome aboard, and please feel free to ask anything.

Tex
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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.
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fudette
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Post by fudette »

Thanks for the welcome!! :pigtail: I do have to say that it is wonderful to "know" other people with the same issues! Sometimes friends and family just don't understand it fully.

As for bradycardia, I do not have that but I do have MVP (mitral valve prolaspe) so maybe that's why my dr. has me taking both of those medications...now along with the Entocort which I picked up this morning and have taken already (fingers crossed!)

After your response I may try real coffee again and see what happens. I do believe you're right about it not being a trigger because I can drink just a glass of water and still wind up in the bathroom.

Again, thanks for your welcome!
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tex
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Post by tex »

Fudette,

FWIW, I believe that more than a few other members here have MVP. It's a fairly common condition, so I doubt that it has any unique link with MC. You're probably correct, though, that this is the reason why he prescribed the atropine. One of the listed side effects of Lialda is bradycardia, but I have never heard of a doctor prescribing atropine concurrently with it, for that reason alone.

You are probably aware of this, but just in case you aren't, MVP, (in some cases), has been associated with a magnesium deficiency. The reason I bring that up is because many of us, (in fact, much of the general population), have a magnesium deficiency, or at least a magnesium insufficiency. I sometimes have a problem with it myself, and the symptoms I get from it are, the inability to take a deep breath, foot and leg cramps, restless leg syndrome, etc. In fact, I believe that I read somewhere that magnesium deficiency is a leading cause of restless leg syndrome. Doctors are apparently quite happy to write out a prescription for an anticonvulsant drug to treat restless leg syndrome, though, rather than to advise patients to add more magnesium to their diet.

It's not easy to get adequate magnesium in our diet, especially while we are having a malabsorption problem, due to our MC. Supplements can help, but as many here who are using that method have discovered, magnesium is a laxative, so the dosing, and/or method of administration, can be very tricky.

You're most welcome. I hope the Entocort brings fast relief.

Tex
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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.
ant
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Post by ant »

Dear Fudette

Welcome! I hope the entocort works. How many are you taking a day and for how long has the doctor suggested? It is a med that has worked - long term- for me (along with diet). It took about 5 days to "kick in" so unless you get side effects, I would stick with it for a few months at least IMHO

While in a flare I would avoid anything that you suspect could cause D. Including Gluten and diary and maybe also Soy. I did not dare drink coffee for over a year after getting my MC dx. But I now drink it most days (black of course) without problem.

best wishes on your journey to remission, ant
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fudette
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Post by fudette »

Hi Ant,

I had called my dr. on Friday and he left me a message with his cell phone #; he's been a wonderful dr. and very concerned which is refreshing. He had already had me taking Atropine 1 pill 2x a day; the lialda is 1.2 gm tablets 2 pills once/day. After working somewhat for about a week I started again and he called in entocort 3mg, 3 pills once daily. I started today so I'm hoping to feel the results. Quite anxious actually for something to work longer than a week.

Thanks for your concern; everyone here seems to want to be helpful and you can't believe how much that means.

Laura
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