The GI Specialists Are Improving MC Treatment Guidelines

[tex]

Hi All,

Gabes brought this article on Medscape to my attention a few days ago, and I forgot to post about it (unless my memory is playing tricks on me). No, the GI docs are not recommending diet changes yet, but at least they're improving their drug treatment guidelines. Here are the latest guidelines issued by the American Gastroenterological Association Institute for the medical management of microscopic colitis:

Specific recommendations include:

For symptomatic patients, treatment with budesonide is preferable to no treatment, or to treatment with mesalamine, to induce clinical remission.

In symptomatic patients for whom budesonide therapy is not feasible, treatment with mesalamine, bismuth salicylate, or prednisolone (or prednisone) is preferable to no treatment to induce clinical remission.

In symptomatic patients, the American Gastroenterological Association suggests against combination therapy with cholestyramine and mesalamine, vs mesalamine alone, to induce clinical remission.

In symptomatic patients, the association suggests against treatment with Boswellia serrata or probiotics vs no treatment to induce clinical remission.

For patients with recurrent symptoms when induction therapy for microscopic colitis is discontinued, the association recommends budesonide to maintain clinical remission.

Note that they now agree with us here on this board that budesonide is a much more effective treatment for MC than mesalamine. And just as we have long insisted, they specifically advise against treating symptomatic patients with probiotics (contrary to the obsolete advice previously offered by many GI docs). And they now recommend long-term use of budesonide for maintenance in cases where patients are unable to maintain remission without it. (Again, that has been our position on this discussion board).

New Guideline Addresses Microscopic Colitis Management

Here's a link to a PDF of the original document:

http://www.gastrojournal.org/article/S0 ... 1625-X/pdf

Note that most browsers will not properly interpret that link. In order to see the document you may have to copy the entire link and paste it into the address window of your browser.

They're slowly getting there. Now if only they could comprehend how to use diet changes to treat the disease.

Tex

[DebE13]

When I had my last appointment so I could keep my entocort rx active, I met with the nurse and she was very open to my non- traditional dosing of it. I was hesitant to tell her how I was using it because I didn't want a bad visit but I decided I was doing myself no favors by not being up front about my healthcare habits. I decided to give her a visual that would be very clear in one quick glance how much I was actually taking. I took a calendar with all the months on one page and circled each day I took a pill and indicated how many. It was quite useful since my typical response is that I take 3mg every five days. It turns out it is a bit more than that but the nurse had no complaints and said I was fine to continue in this manner if I was satisfied with the results (i continue to have D).

I was quite surprised and thankful that there were no issues. This was the same nurse who allowed my son to get tested through Enterolab to reveal possible food issues (he has them). She openly acknowledged that it was for my use, not theirs, because the topic is still debatable but knows that some patients find it helpful. To have the test covered under insurance was great. Hopefully, their attitudes will continue to catch up to what we already know and it will become standard in the future.

[Heathurricane]

Hi Tex & everyone else!

I have a couple of questions, but want to give a quick history of myself...
I'm 28 and also have type 1 diabetes, and nerve issues (which my mom thinks is Fibro) and it seems like most everyone in here also has at least one other autoimmune disorder along with their CC or LC. Anyways, I have always had bowel issues here and there, especially since I was diagnosed and treated for the wrong type of diabetes for almost a year (at age 13), but it was never a constant.
In October 2015 it started...I just returned from a great vacation to San Francisco with my BF when I started to get diarrhea. I thought it was maybe bad food, but after three days, then a week, I got concerned. I was treated for tons of things including hyperactive thyroid, giardia(sp?), etc, but everything came back normal. After a month, I finally had a colonoscopy (that was sure fun), and the Dr said that everything looked normal but they took biopsies and blood work to do a thorough check, and he gave me anti-spasm meds for the time. I was relieved when they called me back and told me that they discovered I had SOMETHING. I was just happy they figured it out, so I could start to get the right treatment and get better. Haha. Joke was on me! Though I am still grateful that it's not a complete mystery and an grateful I found this forum. At the time all they told me over the phone was that I had colitis and to take three chewable peptos, three X a day. I looked up colitis and discovered the many different types there were and got a bit overwhelmed. It wasn't until I got the official letter from the Dr that I was told it was Collagenous Colitis, which is when I found this forum and signed up. .
...anyways, sorry for the long story, but that's the background. The pepto helped short term, until I was constipated, but as soon as I could clear that out my next BM would be straight watery again, then go back to the various different variations, colors, and consistencies I never knew existed with diarrhea until recently. I had to stop the antispasm meds because I definitely felt over medicated and like my head was floating with those.

I finally met with my GI today, and since Pepto (cheaper option) didn't work, he is having me start on budesonide tomorrow morning. I will be taking 3 each morning for 8 weeks. He said he could guarantee remission with this new Rx, but the remission won't last as long as for those who go into remission with Pepto. Thank goodness for awesome insurance saving me $1499+ by the way.

So... Here are my questions...
Q 1- budesonide users... How long on average have your remissions lasted?
Q 2- those who went into remission on Pepto, what is the average length of remission for you?
Q 3- Should I ask my Dr about staying on a smaller dose of budesonide after the 8 weeks is up?
Q 4- any weird side affects?
...I do know this is a unique experience for everyone, but I'm just trying to get an idea of how long I should expect to be in "remission". I travel a lot for work too and also want to try to know if there will be times I don't have to pack adult diapers or know where local pharmacies are for those surprise moments.

Thank you in advance, and again I'm sorry for the long post.

~Heather

[tex]

Hi Heather,

Welcome to our Internet family. If your early bowel issue was primarily constipation, you might be magnesium deficient, because magnesium deficiency is associated with both constipation and diabetes.

Unfortunately your doc's guarantee is not worth much, because even if the budesonide works (without changing your diet), your symptoms will relapse soon after the treatment regimen ends. Budesonide can mask the inflammation, but it can't stop it from being produced, and as long as we eat the foods that cause our immune system to produce antibodies to them, the inflammation continues to be generated every time we eat.

Average length of remission after a budesonide treatment is ended is usually in the 2 to 6 week category. Remission after bismuth subsalicylate might last slightly longer, but I doubt that there is a huge difference (in average times).

Why not just eliminate the problem foods from your diet and enjoy permanent remission (after your gut heals)?

Regarding Q4 (and Q3):

Somewhat common side effects include weight gain, hyperactivity, insomnia, hair loss, neurological symptoms, and others. But not everyone has these side effects, and virtually no one has all of them. Budesonide has a much lower side effect risk than Prednisone.

Budesonide is a corticosteroid, so with longer-term use, it will eventually begin to affect your adrenals (they will tend to lose some of their ability to respond to cortisol demand, because they become accustomed to the corticosteroid supplying most of the daily needs). That's why corticosteroids have to be withdrawn slowly so that the adrenals can relearn how to supply proper amounts of cortisol. With short-term use this is normally not a problem.

Corticosteroids deplete vitamin D, which can compromise the ability of the immune system to function properly.

Corticosteroids deplete magnesium, which is a critical electrolyte with many important functions in the body.

Unless vitamin D and magnesium are properly supplemented, the resulting deficiencies will compromise the ability of the body to utilize calcium to create new bone tissue, resulting in a significantly increased osteoporosis risk in the long term. But note that MC and other IBDs also deplete vitamin D and magnesium, so corticosteroids compound this problem.

But even so, budesonide is probably the safest, effective medication for treating MC. The problem is that when the use of the drug is stopped, symptoms almost always soon relapse.

I hope that some of this is helpful.

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

Tex

[Heathurricane]

Thanks Tex. My concern is that I don't know what foods cause issues. I'll be fine with something one day then the next time I eat it, not so much, then I'm fine again. I know that everyone here says to cut out gluten, but I've been checked thoroughly and have no intolerance for it. Even when that, I cut it out for a bit, and still no results. Would a nutritionist be helpful maybe? Also, regards to the constipation, the pepto caused it, but my issue has always been loose stools. Thankfully my BF is super sweet and supportive, so that is helpful. I don't know any other 31 year old man who would still think his 28 yo girlfriend is great when she occasionally wears adult diapers just in case.

[Gabes-Apg]

Heather
welcome

Gluten and Dairy are both 'highly inflammatory' items to the gut so although you dont think you are intolerant per say, they will be affecting the digestion process and causing inflammation

when you say you cut it out for a bit - how long was that? It can take 4-6 months for gluten antibodies to leave the body

if the medication is causing constipation, then diet modifications and fixing nutritional deficiencies (Vit D3 and magnesium) are your best way forward for good gut health ( and minimising the need of a diaper)

[tex]

I know that everyone here says to cut out gluten, but I've been checked thoroughly and have no intolerance for it. Even when that, I cut it out for a bit, and still no results.

You say you've been checked thoroughly. How were you checked? Unless you've had the anti-gliadin IgA stool tests offered by EnteroLab, you haven't actually been checked. The obsolete blood tests used by all mainstream MDs will not detect the type of non-celiac gluten sensitivity that causes our reactions. The antibodies are produced in the intestines (not in the blood), so that rarely do enough of them leak into the bloodstream to produce a positive blood test result. Furthermore, the tests they use are so insensitive that they are pretty much worthless even for diagnosing celiac disease unless the disease has been damaging the small intestine for so many years that the villi are almost totally destroyed (a Marsh 3 level of damage). Because of that poor sensitivity, many authorities claim that only about 1 in 20 celiacs are ever diagnosed, despite having severe clinical symptoms (doctors can be rather dense when they want to be, because liability risks sort of force them to "go by the book"). Here's a medical research reference if you don't believe me:


From page 108 of the book Microscopic Colitis:

One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).

Here is reference 6 from that quote:

6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855

As poor as the sensitivity of those tests are for detecting celiac disease when total or near-total villus atrophy has already developed, anyone who has a lower level of damage is out of luck — the tests absolutely will not yield positive diagnostic results for them, so their doctor is forced to officially declare them to be "not gluten sensitive". And most of us are not even celiacs, so our level of intestinal damage is less than Marsh 3 (we typically show a Marsh 1 level of villus damage). A Marsh 1 level of damage is consistent with the inflammation in the colon that's used as a diagnostic criterion for LC. Therefore our chances of being diagnosed as gluten sensitive by a mainstream doctor are close to nil (unless they stray from the official diagnostic guidelines), even though virtually all of us here are just as sensitive to gluten as the average celiac.

And Gabes is quite correct — short term gluten avoidance is typically just an exercise in futility. It takes a while to get our antibody levels down to a level at which we stop reacting. The half-life of IgA anti-gliadin antibodies is 120 days, so if our antibody levels are high when we begin the diet, it can take a long time for them to decline down to a normal level. And if we do not also exclude your other food sensitivities while we are avoiding gluten, those foods can prevent us from ever reaching remission. We have to do virtually everything right (not just most things right) in order to control this disease, because it can be very unforgiving. We have to be just as determined to kick it to the curb as it is determined to ruin our life.

I don't know any other 31 year old man who would still think his 28 yo girlfriend is great when she occasionally wears adult diapers just in case.

I hear you but I'll bet a GF cookie that virtually all of the 31 year old men who are members of this discussion forum would consider your practice of wearing adult diapers to be not only "normal", but prudent. And if you will give us a chance to prove to you that diet changes are the key to getting your life back, those diapers will soon be only a memory, just as they are to many of us.

Tex

[BearcatRx]

So... Here are my questions...
Q 1- budesonide users... How long on average have your remissions lasted?
Q 2- those who went into remission on Pepto, what is the average length of remission for you?
Q 3- Should I ask my Dr about staying on a smaller dose of budesonide after the 8 weeks is up?
Q 4- any weird side affects?
...I do know this is a unique experience for everyone, but I'm just trying to get an idea of how long I should expect to be in "remission". I travel a lot for work too and also want to try to know if there will be times I don't have to pack adult diapers or know where local pharmacies are for those surprise moments.

Thank you in advance, and again I'm sorry for the long post.

~Heather

1. I used 9mg of entocort for 12 weeks and never really reached remission.

2. Never went into remission with bismuth.

3. Typical dosing is 9mg for 8 weeks, followed by tapering down to 6mg, then 3mg.

4. I had virtually no side effects that I could tell.

Honestly, loperamide was my best go-to medication. I could take one to two daily and never had any surprise moments. I am currently taking colestipol 1gram BID and one lomotil daily and have virtually no stomach issues anymore. I have had, and you can ask just about anyone here, a very stubborn case of MC. It hasn't been severe, it just didn't respond to most treatment options. Oh and I'm 35, if I had MC I don't suppose I'd worry about someone having to wear some sort protective garment. I mean the alternative is much worse.

[tex]

Heather,

Yes, I can certainly vouch for the fact that Bearcat has had a tough time controlling his MC symptoms. And he's a pharmacist, so he definitely understands meds and how to take them. This can be a mighty tough disease to control, for many of us.

Tex