Hey all,
I'd love some feedback on reaching/maintaining remission with this lovely disease. I tried Asacol when I was first diagnosed, but it was useless. I've been on Endocort several times, the most recent being for 2+ years, flaring badly every time I tried to wean off. I tried to ride out the flare July 2013, and ended up back on 9 mg/day for a few months to sort it out. I did a lifestyle overhaul to reduce my stress levels & weaned very very slowly (over about 6 months) off of Endocort. Last dose was sometime mid-August. I've had a few short flares (a few days, countless watery BM w/urgency) that have all gone away on their own. Currently just down to 1-2 BM in the morning & 1 at night, which is as close to normal as I've been in years.
I'm a medical student, and clinics start this spring. Unfortunately they're very stressful with a chaotic schedule & not conducive to bathroom breaks when flaring (imagine feeling urgency when a patient is anesthetized on the table in front of you & you're in the middle of surgery!). So, I'm pretty desperate to get & stay in full remission so I don't start flaring again this spring.
Current meds/supplements:
1000 mg Turmeric (started a week or two ago)
5000 mg Vit D
vegetarian multi vitamin (I'm not vegetarian, but it has better levels of B vitamins & iron)
2.5 mg Lomotil (1 tablet)
Zofran (as needed)
.75 tsp Metamucil 1-2x/day
Nuvaring (hormone fluctuations trigger a flare - this keeps them constant)
Also eating gluten-free, which I find very helpful. I'm not quite as Celiac-style strict as I should be, but I have been changing that. I haven't noticed any issues with dairy products, but I've been phasing them out of my diet. No raw veggies or fruits, although I'll have some orange slices occasionally. MSG & nitrates trigger migraines, so I avoid both of them. I'm a very picky eater, so I hesitate to do a strict exclusion diet because I resort to just not eating anything.
I have not run any of the food allergen testing because I have an IgA deficiency so I think they would likely be false negatives. I've had 2 colonoscopies (2008 & 2011), both showing lymphocytic colitis, the second showed large bands of collagen too. Current GI doc did an endoscopy (2013) because of my nausea & found nothing - she took biopsies for Celiacs when she was in there which were negative.
Critique my plan
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi TBD,
Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it.
You definitely have the right idea, but as the director of the CDC said yesterday (when he blamed the patient [nurse] for the failure of CDC guidelines to prevent her from developing ebola), you are not quite following protocol. Isn't that just like a doctor? . . . Always blame the patient, in order to save face, when the treatment/protocol doesn't work as claimed. Anyway, my point is, following a GF diet, but not being strict, is pretty much useless, because it will not bring remission. Strict avoidance is essential, if you hope to control your symptoms by diet. Believe it or not, we are typically more sensitive than celiacs, even though we always show negative results to the celiac screening tests (unless we actually have celiac disease, in addition to MC). Of course in your case, with selective IgA deficiency, the celiac blood tests will show false negative results also, unfortunately, even if you have celiac disease.
I realize that you don't want to hear this, but with selective IgA deficiency, your only hope of reliably detecting all of your food sensitivities is an elimination diet. MC is not what anyone would call a "forgiving" disease. In order to reach and maintain remission, we have to strictly follow a personalized treatment plan (based on avoiding all of our food sensitivities) at all times. Like a computer, with MC our immune system is reprogrammed to recognize certain food sensitivities, and like a computer, our immune system will not tolerate "almost correct", or any other halfhearted attempts to circumvent accuracy. We have to actually get it right, or we will be stymied in our attempts to enjoy a symptom-free life.
With that pep talk out of the way
I will certainly concede that you are off to a good start, with good intentions, but you will really need to tighten up your standards if you are going to kick MC to the curb. Your second colonoscopy biopsy results show that your inflammation level is continuing to increase, and that's not good for your long-term risks of developing additional AI diseases. MC is a primary source of inflammation, and controlling it early on can do wonders for your long-term health and happiness. A little diet deprivation now will pay huge dividends down the road. Since you still have the best part of your life ahead of you, getting inflammation under control and optimizing your health at this point, is vital, IMO.
And
on pursuing a medical career. The world desperately needs medical professionals who are open-minded and qualified. We would love to help in any way we can to get your MC under control so that it will not handicap your chances of realizing your goals.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it.
You definitely have the right idea, but as the director of the CDC said yesterday (when he blamed the patient [nurse] for the failure of CDC guidelines to prevent her from developing ebola), you are not quite following protocol. Isn't that just like a doctor? . . . Always blame the patient, in order to save face, when the treatment/protocol doesn't work as claimed. Anyway, my point is, following a GF diet, but not being strict, is pretty much useless, because it will not bring remission. Strict avoidance is essential, if you hope to control your symptoms by diet. Believe it or not, we are typically more sensitive than celiacs, even though we always show negative results to the celiac screening tests (unless we actually have celiac disease, in addition to MC). Of course in your case, with selective IgA deficiency, the celiac blood tests will show false negative results also, unfortunately, even if you have celiac disease.
I realize that you don't want to hear this, but with selective IgA deficiency, your only hope of reliably detecting all of your food sensitivities is an elimination diet. MC is not what anyone would call a "forgiving" disease. In order to reach and maintain remission, we have to strictly follow a personalized treatment plan (based on avoiding all of our food sensitivities) at all times. Like a computer, with MC our immune system is reprogrammed to recognize certain food sensitivities, and like a computer, our immune system will not tolerate "almost correct", or any other halfhearted attempts to circumvent accuracy. We have to actually get it right, or we will be stymied in our attempts to enjoy a symptom-free life.
With that pep talk out of the way
I will certainly concede that you are off to a good start, with good intentions, but you will really need to tighten up your standards if you are going to kick MC to the curb. Your second colonoscopy biopsy results show that your inflammation level is continuing to increase, and that's not good for your long-term risks of developing additional AI diseases. MC is a primary source of inflammation, and controlling it early on can do wonders for your long-term health and happiness. A little diet deprivation now will pay huge dividends down the road. Since you still have the best part of your life ahead of you, getting inflammation under control and optimizing your health at this point, is vital, IMO.And
on pursuing a medical career. The world desperately needs medical professionals who are open-minded and qualified. We would love to help in any way we can to get your MC under control so that it will not handicap your chances of realizing your goals.Again, welcome aboard, and please feel free to ask anything.
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.
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TwoBlackDogs
- Posts: 3
- Joined: Tue Oct 14, 2014 2:26 pm
Thanks for the input, Tex 
.
I have been tightening down on the "gluten-free" issue, just a social barrier I need to get over. Like to ask waiters for a gluten-free option when I'm out with a group of friends.
I'm hesitant to do the elimination diet only because I tend to choose "nothing" when faced with "elimination diet food" or "nothing." I guess I need to pick tastier foods to do it with. Do you think Rice Check would be OK as the carb? And duck as the protein?
.I have been tightening down on the "gluten-free" issue, just a social barrier I need to get over. Like to ask waiters for a gluten-free option when I'm out with a group of friends.
I'm hesitant to do the elimination diet only because I tend to choose "nothing" when faced with "elimination diet food" or "nothing." I guess I need to pick tastier foods to do it with. Do you think Rice Check would be OK as the carb? And duck as the protein?
Yes, the social effects of this disease are a significant issue, especially when we're young, but we learn to deal with them, because being sick is never really a good choice.
For some reason, some of us seem to react to Rice Chex, but that doesn't mean that it wouldn't work for you. Most of us do OK on Corn Chex though, if you can tolerate corn. Duck and/or turkey works fine for most of us, even if we are sensitive to chicken. Most of us can tolerate almond milk and coconut milk without any problems, also. The safest is to do our own cooking, from scratch, and Dee's Kitchen contains hundreds of gluten-free, casein-free, soy-free, gourmet-class recipes, but I realize that medical school leaves little time for cooking. Many of us cook big batches on weekends, and freeze single serving size portions to be thawed and reheated during the week.
Tex
For some reason, some of us seem to react to Rice Chex, but that doesn't mean that it wouldn't work for you. Most of us do OK on Corn Chex though, if you can tolerate corn. Duck and/or turkey works fine for most of us, even if we are sensitive to chicken. Most of us can tolerate almond milk and coconut milk without any problems, also. The safest is to do our own cooking, from scratch, and Dee's Kitchen contains hundreds of gluten-free, casein-free, soy-free, gourmet-class recipes, but I realize that medical school leaves little time for cooking. Many of us cook big batches on weekends, and freeze single serving size portions to be thawed and reheated during the week.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I agree with tex, it has to be full compliance diet wise, removal of all triggers, and strict adherence.
Doing cook ups on the weekend of low fibre, low inflammation meals can really help stick to the eating plan.
Supplement wise maybe consider Magnesium, Vit C and Zinc.
This helps with a multitude of things, balance histamine inflammation, helps adrenals, helps immune system, cell health to clear toxins etc.
I also will reiterate what Tex has said about long term wellness and health, sadly once MC has started we can not postpone dealing with it. Getting inflammation under control and avoiding long term issues is key. Coming up with an eating plan, lifestyle plan, managing triggers will always be needed.
Doing cook ups on the weekend of low fibre, low inflammation meals can really help stick to the eating plan.
Supplement wise maybe consider Magnesium, Vit C and Zinc.
This helps with a multitude of things, balance histamine inflammation, helps adrenals, helps immune system, cell health to clear toxins etc.
I also will reiterate what Tex has said about long term wellness and health, sadly once MC has started we can not postpone dealing with it. Getting inflammation under control and avoiding long term issues is key. Coming up with an eating plan, lifestyle plan, managing triggers will always be needed.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama