Newly diagnosed LC, many questions.

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Gloria
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Post by Gloria »

Al wrote:I ate some pasta yesterday and that about killed me though.
I guess we all have to test at least once whether gluten is really a culprit in our MC. Once we find out, we never deliberately try again. There are many choices for gluten-free pasta made from rice, corn or a combination of corn and quinoa. They don't taste much different from wheat pasta, either.
Al wrote:I started my probiotics yogurt experiment today. My intestines were crazy noisy this evening and maybe some extra gas, but when I went number 2 it was splashy like D, but formed like Norman.
I wouldn't have expected that, either. Usually when we have gurgling and gas, it's a bad sign. This one will require more testing.

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natythingycolbery
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Post by natythingycolbery »

My symptoms from SSRI's started exactly six weeks to the day of me taking them, which is why no one thought it was them causing it until my GI got involved.
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell

Diagnosed with MC (LC) Aug 2010
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alclarkson
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Post by alclarkson »

I did some research last night and Cymbalta is a SNRI, not an SSRI. Now I'm second guessing whether or not Cymbalta was the culprit.. I think I'm going to make plans to move ahead with the lap chole. I know I take the chance of making my D worse, but atleast I won't have the nausea and side pain, hopefully.
Diarrhea, nausea, abd. pain 3/31/11. Confirmed gallstone/sludge 4/15/11. Confirmed Lymphocytic Colitis 5/6/11 via colonoscopy. Started Pepto 5/21/11 & stopped 6/21/11. Stopped Cymbalta 6/9/11- D stopped temporarily. 7-19-11- lap chole
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tex
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Post by tex »

Andrea,

You have to consider that SNRI's are relatively new, (compared with SSRIs), and as I pointed out in another post somewhere - the jury is still out on them. Drug-induced diseases are virtually always reported on a case by case basis, after the drug has been approved for market by the FDA. The pre-approval trials are usually 6 to 8 weeks in length, and very few drug-induced syndromes become apparent in that relatively short time period. Even when they do, those data are usually removed from the report, because the subject typically drops out of the trial when it occurs, or the researchers remove the data because of "special circumstances".

The problem is that diagnoses of certain diseases are typically not made overnight, so that it's very unlikely that there would be time for a diagnosis of MC in that short period of time. IOW, a subject might develop MC, but the symptoms would be reported as diarrhea, (not as MC, because a diagnosis of MC typically takes a while). If MC should develop, it will typically be toward the end of the trial period, (because it's so short), leaving little time for establishing a diagnosis. Because of that, it typically takes years for drug-induced disease connection patterns to become apparent. You will note that diarrhea is a very commonly-listed symptom for many/most drugs in this class. For Cymbalta, for example, clinical trials showed that 10% of cohorts reported constipation, while 9% reported diarrhea, (and 24% reported nausea :shock: ). :shrug:

Still, the odds are 9 to 1 in your favor, on the diarrhea, and 3 to 1 on the nausea, so it's worth a shot, (just be aware that the drug will always remain a suspect, until more real world data are available).

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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sarkin
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Post by sarkin »

Andrea,

Forgive me, I can't remember whether you were experimenting also with diet - have you had any improvement in symptoms from either meds adjustments or diet since you started down this path?

Hope so!

Sara
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Post by Deb »

There are many choices for gluten-free pasta made from rice, corn or a combination of corn and quinoa. They don't taste much different from wheat pasta, either.
I just had to mention that I went to a favorite Italian restaurant here for lunch today after learning they offered a gluten free menu. She brought me
a copy of that but said that most items on their large menu could be made gluten free. I ordered a delightful multi- mushroom pasta/balsamic cream sauce and she brought me a GF roll that was also delicious. I would bet that no one would know without being told that what I was eating was gluten-free and I passed samples around. I asked the waitress if they made the rolls and she said no, they bought them and she happened to have the label on her, which she gave me. Surprise, it was from the French Meadow Bakery, which I've mentioned on here before from whom I'd had a good pizza crust in a restaurant that used their crust. Subway is also getting their gluten free bread from them. Anyways, the ingredients label includes (which I'm assuming are listed by weight):
Water
Rice Flour
Corn Starch
Tapioca Starch
Eggs
Canola Oil
Potato Starch
Sugar
Less than 2% yeast, protein replacer (potato starch, tapioca flour leavening{calcium lactate}
calcium carbonate, citric acid, carbohydrate gum) salt, xanthan gum, apple cider

I'm thinking that with the newly learned ratios (at least for me) of 70% grains, 30% starch, I should be able to somewhat back into this recipe by weight, starting with the eggs. What do ya'll think....I'm kind of excited. If the ingredients are listed by volume it might be more difficult.
I should add that I generally eat a pretty low carb diet but there are times when everyone is having a hamburger up at the lake
that I'd like to have one with a bun too. :)
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sarkin
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Post by sarkin »

Deb, if you're excited - GO for it!

I'm pretty low-carb myself, but the first bread-like thing I tried, about 6 weeks into my Grains Are Evil project actually made me squeal with delight. (No grains in that one - but it does have eggs, which are out for me.)

If you stop being excited, you can always buy a packaged bread or frozen dough, and we will still say GO for it!

Let us know,

Sara
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natythingycolbery
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Post by natythingycolbery »

tex wrote:Andrea,

You have to consider that SNRI's are relatively new, (compared with SSRIs), and as I pointed out in another post somewhere - the jury is still out on them.
Tex, there is a link to a list of side effects of SNRI's somewhere on this forum that lists pretty much every other form of colitis appart from MC as a side effect. So this doesnt suprise me
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell

Diagnosed with MC (LC) Aug 2010
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tex
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Post by tex »

Yes, I remember you posting it.

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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alclarkson
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Post by alclarkson »

Sara- I'm avoiding diet changes like the plague. I'm nearly 3 wks into the pepto tx. I've backed off to 1 2x aday from 2 3x a day. Backing off helped quite a bit. I don't have abdomen pain anymore which is great. Haven't had watery D since I took immodium for a week before starting the pepto. BMs are now irregular, usually skinny snakes, sometimes semi formed and most of the time puff poop. A far cry from my once every 3 days well formed pre LC days.
I started en-liven, a probiotic yogurt yesterday morning. I really don't know if it's helping or hurting yet. I searched through the forums for probiotic info, but didn't find anything very recent. Is ther a specific probiotic I should be looking for? I read some info on recent research about probiotics helping IBD, so I'm holding out hope.
Tex- thanks for the info, it sounds like no ADs are safe.

I ran into my GI today and let him know what was going on. He told me to try and stick it out and that the pepto takes a while. I asked him about the possibility of steroids and he said my case is not bad enough. Should I accept his answer or fight for the roids? I just wonder, since my case was so sudden, literally, I ate lunch and was in the bathroom 30 minutes later, that if I got a cours of the steroids it would clear me up and I could be done with it, at least for a while. I've only had the symptoms for 2&1/2 months.

You guys and gals are great. This just stinks.[/quote]
Diarrhea, nausea, abd. pain 3/31/11. Confirmed gallstone/sludge 4/15/11. Confirmed Lymphocytic Colitis 5/6/11 via colonoscopy. Started Pepto 5/21/11 & stopped 6/21/11. Stopped Cymbalta 6/9/11- D stopped temporarily. 7-19-11- lap chole
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sarkin
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Post by sarkin »

Pepto helped me almost immediately. I ratcheted my diet back to exclude even "maybe" risky foods. We all choose our path (or our own plague, lol), and I just couldn't be walking around like that. So I picked fighting symptoms instead of diet change.

Even people with no 'diet restriction' avoid dairy when they're having digestive symptoms. Yogurt probiotics could be making things worse instead of better. I took Asacol many years ago, and had symptoms like those you describe after lunch - sudden and bad. Turns out, Asacol contains lactose as an inactive ingredient. (Not so inactive, in my case.) Casein (the protein in dairy) is usually a worse offender, and is not eliminated from dairy with enzymes or processing.

Maybe your symptoms are less horrible, or maybe you have more 'true grit' - but if I were you, I'd subtract any possible symptom-provoker, rather than add a fix, at this point.

Steroids might still help while you take them, but you'll have a heck of a time weaning off 'em if there is a culprit food in your diet. So it could be a waste of a possibly powerful tool in your healing.

If you have no food intolerance, then - the least gruesome way to ascertain that would be something like a BRAT diet for a few days. (After over a few months of symptoms and a few weeks of Pepto with no joy, any relief would be welcome, right?). You could be lucky - your diet problem might be something easier than gluten or dairy, but till you know... you just don't know.

Otherwise you're playing whack-a-mole. You bop it with Pepto, it pops back up, you hit it with a steroid... pops up again... Not a fun game.

Good luck - I truly hope you're not gluten sensitive, or dairy intolerant, or anything else.

Sara
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tex
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Post by tex »

Andrea,

To add to what Sara posted. The good news is that theoretically, at least, probiotics should be very beneficial for this disease. The bad news is that we all respond differently, and most of us are unable to find a probiotic that actually provides any long-term benefit for us. Probiotics seem to be a very individual issue. For some of us, probiotics make our symptoms much worse. Most of us can't find one that helps, leaving only a lucky few who are able to find one that truly helps.

The problem with taking a corticosteroid treatment is that yes, they will bring remission from symptoms in many cases, and they are capable of bringing remission in most cases, if they are taken in conjunction with the right diet changes. However, corticosteroids also retard healing. Consequently, they prevent the gut from healing properly. As a result, a few days to a few weeks after the 6 or 8-week corticosteroid treatment is completed, the patient virtually always relapses. Therefore, corticosteroids are only effective on a long-term basis, and most of them cannot safely be taken on a long-term basis, due to their Draconian side effects. It's sort of a "Catch-22" situation. Only Entocort can be taken on a long-term basis with relative safety, and most GI docs are reluctant to prescribe it for long-term use, because they don't understand that it is much less systemic than all the other corticosteroids.

Trust me, no one wants to change their diet. It's no fun, and it's difficult and frustrating to accomplish. The unfortunate reality, though, is that most of us are unable to maintain a stable state of remission in the long term, unless we change our diet, and the sooner we change our diet, the sooner we are able to get our life back. Some of us have to make much more extensive changes than others, but precious few of us are able to sidestep that requirement completely, and those that do, are virtually always subject to a possible relapse at any time.

That said, a few members are fortunate enough to experience spontaneous remission, and they tend to pretty much eat what they want, most of the time. If/when they suffer a relapse, then they follow the BRAT diet for a few weeks, and/or take a regimen of Entocort, and after they become stabilized again, they go back to eating the way they want. Out of many hundreds of members, we have maybe 3 or 4 who are able to do that. For the rest of us, though, we have to be strict with our diet, all the time, or we will be in a flare virtually all of the time, unfortunately.

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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natythingycolbery
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Post by natythingycolbery »

Just a random point, my D just randomly started about half an hour after eating one day
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell

Diagnosed with MC (LC) Aug 2010
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Zizzle
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Post by Zizzle »

My D started very suddenly and I was in the bathroom 5-8 times a day for a few months before I saw a doctor and got diagnosed with LC. My case was also "too mild" for steroids. This all happened before I found the Potty People. I decided to order food sensitivity testing through Enterolab before making any changes. At the time, EVERYTHING I ate seemed to make me sick, so I couldn't narrow down the list of problem foods. However, I remember having a "GI bug" a couple of weeks before my Enterolab results arrived. I was so sick, dehydrated, chained to the toilet, and debating each day whether I should go to a hospital. I would eat toast and pasta to calm things down :yikes: By day 8, I realized this was no GI bug. The toast and pasta were making it worse!! I think I was actually having what is known as a "celiac crisis"! When the Enterolab results arrived, I knew. So I was GF/DF and mostly SF from then on, with almost miraculous improvement right away. Of course the miraculous improvement didn't stay that way. I've had ups and downs, but I'm 80% better than before I started the diet, and I only take Pepto on rare occasions, nothing else.
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tex
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Post by tex »

Zizzle wrote:I would eat toast and pasta to calm things down :yikes:
That reminds me of something similar that happened to me. I was about halfway through all the tests that my GI doc had scheduled, and I was as sick as a dog, and losing weight steadily, so on one followup visit, I asked him if there was some special diet that I should be following. I'll never forget his recommendation: "Eat something easy to digest, like cream of wheat". :lol: At the time I didn't know any better, either - so it sounded like good advice. :roll: Fate must have a cruel sense of humor. LOL.

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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