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Terri wrote:Maybe it takes a few weeks for the higher dosage of Entocort to kick in?
You are quite correct. In fact, for most of us, on the average, each time we wean off Entocort, the next time we start taking it again, it takes longer for it to become effective, and/or a higher dose is required. Eventually, after enough cycles, many people get to the point where it doesn't help them at all. (There's a published research reference for that phenomenon in my book).
Budesonide is the most effective, the first time it is used, and it appears to remain equally effective as long as it is taken without interruption. Once we stop taking it, and allow enough time for it to be eliminated from our body, then each successive time that we start a new cycle, and we begin taking it again, it will be less effective than it was the previous time, etc.
Camie,
I agree with the others about the hazards of processed foods. When I was recovering, I reacted virtually every time that I tried to use processed foods and mixes (even though the ingredient list appeared to be safe), especially if they contained more than a few simple ingredients.
The recipe for the electrolyte drink that Terri mentioned is in this topic:
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.
A little bothersome about the Entocort but not surprised. I will remember that if I ever get put on the drug. Keeping my fingers crossed. Probably is true for the other drugs as well, including Imodium. I mention Imodium because it works so well for me (so does Pepto) but I can see that on and off treatment of the drug would either require more or it just would stop working. I hope not though. I'm going to try my best to only take one or the other unless I absolutely need to. I get off Pepto in 3 weeks! I've heard of people taking 8 Imodiums a day then eventually have to up it to 10 and some I've read would take 20 a day. Wow! I can't even imagine.
Thanks for the link to the electrolyte solution! I will keep it on hand in case I need it.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Many of the ready-made GF foods contain tapioca or soy flour. I finally stopped buying any of them and learned how to make my own GF foods, substituting arrowroot flour for the tapioca starch.
It's been a while since I drank Gatorade - I drink water only because it's safe, but I seem to remember that some Gatorades contain gluten. I would avoid it if I were you.
One more thought - are you using Imodium AD? Most of the generics and other Imodium types contain lactose. Imodium AD is lactose-free.
If Entocort helped you when you first took it, it should help you the second time you've gone back on it. It didn't start losing effectiveness for me until I'd gone off and on it for three or more times. I suspect that you're eating something that is an intolerance. Since you're having near-Normans some days, it should be fairly easy to determine the offensive food. Chicken and rice are usually OK, but I and others here can't eat either. There are always exceptions to the rule.
Good luck! I hope you can figure this out.
Gloria
You never know what you can do until you have to do it.
OMG...Gloria....I didn't know that about the generic Imodium. I have some Loperamide (Kroger brand) and I just checked and sure enough it has anhydrous Lactose (what's with the different lactoses?). It does say it's gluten free but it never occurred to me to check for lactose. Will have to go with name brand next time. Thanks for enlightening us on that. The one med I hadn't checked yet for the dairy element. By the way why do they put Lactose and Polyethylene Glycol in an anti-diarrheal medication anyway? Go figure. Well so much for spending less on that med.....back to brand it is! Though the generic works 100% for me, I don't want to chance the lactose at this time.
Thanks again,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
things like lactose are a preservative.
others 'stablise' the active ingredeint so they could make the medication.
coatings are to protect your tongue from bad taste
other ingredients are used to make the tablet its size, if there were no inactive ingredients the tablet would be too small to package and handle.
Generic, cheaper brands of all meds tend to more risky inactive ingredients like gluten, lactose, soy etc.
quite often the ingredient list is not on the outside of the package. it may only say 'gluten free' on the outside.
either check via the net or get your pharmacist to check their technical sheets.
the celiac websites and forums have great lists of medications that are gluten free, checking for lactose and soy takes a bit more detective work.
So far, i have contacted 3 different pharma companies distributing a med to check its ingredients for soy, not once has any of them replied to my email or returned my calls.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Camie,
I hope today finds you feeling a little better. My only suggestion would be to try some coconut water, full of nutrients. I drank a lot of it when I was flaring. I also stayed away from Gatorade, full of sugar. Oh, and I could not tolerate rice milk, but found almond milk worked for me.
Another suggestion might be an accupuncturist. There are some out there that specialize in digestive issues. I started going to one about a year ago and I think it helped quite a bit.
I can remember in the early days of taking entocort.. having the capsule shoot into the toilet.. began to wonder if they would ever work. Lucky for me entocort did the trick for me. As I have said on other posts.. It took 6 years to wean off of entocort.. now two years in remission.
grannyh
I had a great response to Entocort, but when I went off it, my symptoms returned. I chose not to go back on Entocort because I do not want to take corticosteroids for a long duration. While Imodium helped me some, I couldn't get control of things. At the suggestion of someone on this board, I went looking for a naturopath. I found a wonderful doctor who is a licensed naturopath AND Chinese medicine doctor. She supports inclusion of Western Medicine within naturopathic and Chinese meds. She took blood and ran a specialized panel that checked for something like 133 sensitivities.
I was shocked to learn that I am sensitive to almonds (there went my almond milk and almonds), green beans, eggs (I was eating eggs almost daily for protein) and red kidney beans (I eat a lot of Mexican food as a native of New Mexico). I made those changes to my diet in addition to GF and DF. My doctor also put me on a probiotic and prescribed medicinal protein powder that I take almost daily.
I'm not having as much WD as I used to, but I rarely see Norman. My stools tend to be "softserve". That said, I'm improved as I am only going to the bathroom 3-7 times a day. I was up to more than 20 at one point, with explosive D.
Gatorade was problematic for me too--I think it is something about the sugars and the number of ingredients. I love the Lara bars but it is hard for me to stop at just 1. I'm probably ok eating 1/2 bar but I've taken them off of my food regimen for now as I could tell they were problematic. I think it comes down to too many ingredients and too sugary also.
Early on I did well keeping it very simple and removing anything with an ingredient list which meant having a protein and an overcooked veggie for breakfast.
Hope the Entocort kicks in soon and you feel better! Brandy
Thanks Gloria & Gabes- didn't realize the generics were more risky, so much for trying to save a few pennies. I'm going to check my medicine cabinet now.
