New Doctor, wants colonoscopy?

[trickylou]

I knew my hopes were unrealistic.
I was diagnosed February this year. Went on Budesonide soon after. 9mg for 8 weeks, started 6mg and my doctor's office stopped returning calls or answering chart messages. New doctor today, he seemed *shocked* that the budesonide did not work. It works for "everyone". Told me to stop taking it. I must have something else, he thinks. Orders blood tests and stool tests, and schedules me for another colonoscopy.
It was not an opinion that I had CC, it was a diagnosis from microscopic examination, I don't mind the other tests, but I really don't want the colonoscopy. I have severe colonic looping and the procedures have been painful. Here is a little about my path, and my questions, my hope for support:
I stopped eating gluten, dairy and went low fodmap. I am vegetarian and was using tofu but stopped in April. Took 9 mg of bud for 8 weeks, I stayed on 6 mg budesonide for 4 weeks, did 6 and 3 alternately for a week then went to three mg, been on three for 3 weeks. I found a pumpkin protein that has not given me immediate trouble. but my diet is very limited. Rice, 1 green banana, a tablespoon of almond butter and protein drinks (low fodmap) , I still get unpredictable WD, I take loperamide and gas x to help, but it is unpredictable even if I do not change my diet. ( I do take vitamins B and D but can not take any magnesium with out WD) I use an electrolyte supplement as well.
Should I stop the budesonide? I know it is not fixing me, but I was going to slow wean before I met this MD. I have osteopenia already so I would prefer to get off the medication. I think he wants me off so I can have the colonoscopy when the bud is out of my system.
How do I refuse the colonoscopy? I am thinking of going on a medical leave in the fall if I am not better and will need a doctor to support that. Being a teacher who can't control her bowels is not something I can continue. I have lost 30 pounds since January.
While I wait for the blood and stool tests the doc suggested I can take up to 8 loperamide a day, which is kind of expensive and, am I the only one who really struggles with the packaging of those little tabs??
Honestly, I think I could live with the new normal of not being able to eat like I used to, but I can't handle the unexpected WD and incontinence. Any advice would be appreciated.

[trickylou]

I am going to add this here: won't loperamide effect stool tests? How long do I have to be off antidiarrheal before gathering samples? The lab didn't even tell me if the tests had to be on separate days or from same BM .
Tests ordered: c. difficile assay, calprotectin, fecal globin by immunochemistry, Giardia AG EIA , stool pathogens by PCR

[jbrohlr]

I'm sorry you still are having a flare.

In regard to your list of foods: I had a big reaction to rice three years ago. I started rice to gain weight and everything was o.k. for about 2 weeks till I started flaring. Not that you are necessarily reacting to rice (many MCers are o.k. with rice) but you might consider it a possibility.

I give protein powders/drinks a wide berth. Those commercial protein products always seem to have ingredients that are troublesome.

Have you tried topical Magnesium? I can't ingest magnesium orally either, so I use magnesium spray and Epsom salt baths throughout the day. According to "Understanding Microscopic Colitis" a magnesium deficiency can keep people with MC from reaching remission. Same with a vitamin D3 deficiency. I have a hard time with too much salt and/or potassium as well - have to be careful with how much I ingest in a day.

John R.

[tex]

John has some good suggestions. Here's my opinion of the "help" you're receiving from your gastroenterologists: neither one appears to understand much about treating MC. Your new Doctor is wrong — Budesonide does not work for everyone, budesonide is only effective for roughly 80% of MC patients, at best, according to published research. If I were in your situation, I certainly wouldn't subject myself to the expense, inconvenience, and aggravation of an unnecessary colonoscopy. MC diagnoses are never accidental or incorrect, since they have to be determined by looking at a patient's biopsy samples under a microscope. MC can be missed, but never accidentally misdiagnosed. And MC is for life, so it isn't going away, although your colonic mucosal cells may eventually return to normal histology if you carefully avoid all your food sensitivities so that your intestines can eventually totally heal (which usually takes from 5 to 10 years, or more).

When a patient's MC does not respond to their recommended treatment, most gastroenterologists who don't understand the disease, immediately assume that they've missed something, and they request another colonoscopy to discover what they missed. But those follow-up colonoscopies never, ever accomplish anything worthwhile, because the problem is the way they were attempting to treat the disease, not something they missed.

If the budesonide doesn't seem to be helping at all, you might as well stop taking it. There's probably something in your diet that is still causing you to react. If you want to discover exactly what it is, Enterolabs' A2 + C2 panel is designed for vegetarians and vegans, and will tell you exactly what causes your immune system to produce antibodies. The loperamide you're taking should not affect the results of Enterolabs stool tests. It's one of the safest medications on the market, and doesn't have any worrisome drug interaction risks that I'm aware of. The biggest risk with taking loperamide is taking too much, and suffering constipation, as a result. Compared with most medications these days, especially prescription meds, that's a rather trivial risk. That said, the stool tests you're thinking of ordering should tell you if you have some sort of infection that's causing your symptoms, but that's very rarely the case. The problem is almost always improperly treated MC. While I can't say for sure, because I'm not familiar with how those particular lab tests are conducted, I doubt that loperamide will affect the results,

I hope this is helpful.

Tex

[trickylou]

In regard to your list of foods: I had a big reaction to rice three years ago. Not that you are necessarily reacting to rice (many MCers are o.k. with rice) but you might consider it a possibility.

I give protein powders/drinks a wide berth. Those commercial protein products always seem to have ingredients that are troublesome.

Have you tried topical Magnesium? I can't ingest magnesium orally either, so I use magnesium spray and Epsom salt baths throughout the day. According to "Understanding Microscopic Colitis" a magnesium deficiency can keep people with MC from reaching remission. Same with a vitamin D3 deficiency. I have a hard time with too much salt and/or potassium as well - have to be careful with how much I ingest in a day.

John R.

Thank you for responding! I could try eliminating rice, it is my only real spoon or fork food right now, but it may be worth a shot. I never really cared for rice before this diagnosis!
I know that protein powders can be troublesome. I have used them for years because eating anything else at lunch would cause me to fall asleep. I have carefully vetted the ones I am using, but you never know!
I can do epsom salt baths, not at work of course, but even topical magnesium rushes through me! I would love an RX for a tropical island with long salt water soaks.

[trickylou]

Your new Doctor is wrong — Budesonide does not work for everyone.
When a patient's MC does not respond to their recommended treatment, most gastroenterologists who don't understand the disease, immediately assume that they've missed something, and they request another colonoscopy to discover what they missed. But those follow-up colonoscopies never, ever accomplish anything worthwhile, because the problem is the way they were attempting to treat the disease, not something they missed.

I hope this is helpful.

Tex

Thanks Tex, every word is helpful. I know the doctor is wrong. I want to be compliant in my care, but I need to figure out how to draw the line regarding a repeat colonoscopy. I wish that I could afford the Entero lab tests, but it is not an option right now. I am a little wary now that they are shipping to Greece?
I am feeling like I am reaching for any solution, maybe I could sell my tractor and afford the test.

[tex]

Incidentally, I agree with John — protein drinks (and protein supplements In general) are not MC patients' friend.

Tex

[jbrohlr]

You might consider sweet potatoes, overcooked (I steam mine-almost to mush).

I hope I don't offend you with this, but perhaps you could reconsider meat in your diet? Meat is an excellent source of protein and fat. It also digests in the small intestine, so it won't ferment in your colon. I eat lamb and recently started to eat pork occasionally. There are options now to avoid factory-farmed meats if cruelty is your motive for avoiding it. It might behoove you to trim some of the fat off for now since you probably have malabsorption and the fat will not digest as well.

John R.

[trickylou]

John- I appreciate your concern and tact. I stopped eating meat for a variety of reasons, including environmental, health, and spiritual. Interestingly enough, it all started with a tick bite and questionable AGS, or alpha-gal syndrome. Not eating meat is ahimsa for me, the practice of non-violence and compassion for all living beings.
The meat industry has a huge impact on the environment so I respect those who choose to source their meat carefully.

[jbrohlr]

I'm sorry if you have alph-gal syndrome, I imagine that is a difficult situation to be in (as well as Lyme disease).

If not then a good book to read is Lierre Keith's "The Vegetarian Myth: Food, Justice, and Sustainability". Keith is an ex-vegan who argues that "veganism has damaged her health and others" Keith also argues that agriculture is destroying not only human health but entire ecosystems, such as the prairie lands, as well as destroying topsoil.

Keith argues that "everyone will get eaten, sooner or later". In sum, her proposition is that herbivores eat grass, humans eat herbivores, and then (eventually) worms/bacteria/etc. eat humans.

When I was a teen and my first two years in college I worked at a vegetable farm in the summer months. We killed all manner of animals, particularly rodents (ground squirrels, rats, mice, gophers, etc.). We would shoot, stomp, bait, and gas these animals because they would ruin crops; ground squirrels had a habit of biting into cantaloupe and other melons which would cause the melons to rot in the field.
We even accidentally killed a couple of dogs and skunk (a particularly gruesome death I won't go into). Basically, if you eat anything, something died for that to happen.

Sorry to be argumentative - I'm not trying to one-up you on the veganism arguments. I just want to try and convince you that you can do what it takes to regain your health, and the world will not be worse off for it.

John R.