MICROSCOPIC COLITIS SUPPORT

HI, My name is Denise and I was diagnosed yesterday (1/7/19) with LC.

I have always had bowl issues since my sophomore year in high school in the 80's. Back then they called it spastic colon. As the years went by it go worse. Unplanned urgent diarrhea kept me from doing many things that I loved. I had to make sure a bathroom was near by. God forbid I got stuck in traffic because just my terror of having a attack could make my stomach start to gurgle.

As I got older they then called it IBS.

When I was 36 I had my gallbladder out and it seemed to get worse. Finally I found Welchol (bile binder) that gave me my life back.

I am now 55 and over the last 4 or 5 years I have had what I thought were IBS flare ups that would last a week or two but then would settle down.

This past November I had the flu shot (Only the second on I have ever had and the first one was 20 years ago) I have always worked with the public but have never gotten the flu. My husband had a heart attack May 2017 and I got one to protect him.

12 hours after getting the flu shot I woke up with explosive watery diarrhea that would not stop. Wasn't sick feeling, just the diarrhea.
I knew that I had to having a reaction to the shot. The diarrhea would only be in the mornings 4 or 5 times but afternoon and evening were okay until I was awoken the next morning running to the bathroom.

I would seem to get better for a few days and then it would hit me again. After 2 months of it I finally made a appointment with my GI doctor. I have colonoscopies every 5 years because my mother is a colon cancer survivor.


Even though it had only been 2 yrs since my last one (never have any polyps) he wanted to do another one. This time he also did a EGD.


He took biopsies of my stomach/colon/instestines.


Of course the reason I am here is because the biopsy came back as LC. Finally a real answer to my years of issues. I also have gastritis which I knew I already had for years.


They said that I probably had a reaction to the flu shot that caused the inflammation and flare up but would never know 100%. I know it caused it!



So today I started a 6 week course of Budesonide and I meet with the dietitian tomorrow.

Hi Denise,

Welcome to the group. Sorry to hear that you've been having to deal with this disease for so long — I've only been living with it for about 20 years, myself.

I just wanted to welcome you, and please feel free to ask anything.

Tex

Welcome, Denise.

I was biopsy diagnosed with LC on June 30, 2018, after being stricken out of the blue with incessant watery diarrhea on April 13. Prior to that, I had never had any GI problems in my 73 years. Two gastroenterologists I consulted recommended budesonide therapy.

You should know that a six week protocol of budesonide is very short, and you might want to ask your GI doctor why. HERE is the official American Gastroenterological Association Institute Guideline on the Medical Management of Microscopic Colitis, and HERE is a more patient friendly summary of the guidelines. You will note that the recommended induction period with budesonide is eight weeks, and that only one-third of patients will achieve remission after that induction period. In the two-thirds of patients who relapse, the guidelines recommend up to a year of maintenance therapy with budesonide at the lowest effective daily dose.

Therefore, some GI doctors -- perhaps with prompting from the patient (such as me) -- will prescribe a much longer budesonide taper from the outset. I am in the the 26th week of a 40-48 week budesonide taper, now down to one pill a day, and the treatment has been very effective so far.

Also note that the patient pamphlet mentions that MC can coexist with celiac disease, IBS or food intolerances. In those cases, budesonide alone may not be completely effective, and you may in addition need to consider some of the dietary changes that seem to be the primary focus of many posters on this particular website.

Kilt wrote:Welcome, Denise.

I was biopsy diagnosed with LC on June 30, 2018, after being stricken out of the blue with incessant watery diarrhea on April 13. Prior to that, I had never had any GI problems in my 73 years. Two gastroenterologists I consulted recommended budesonide therapy.

You should know that a six week protocol of budesonide is very short, and you might want to ask your GI doctor why. HERE is the official American Gastroenterological Association Institute Guideline on the Medical Management of Microscopic Colitis, and HERE is a more patient friendly summary of the guidelines. You will note that the recommended induction period with budesonide is eight weeks, and that only one-third of patients will achieve remission after that induction period. In the two-thirds of patients who relapse, the guidelines recommend up to a year of maintenance therapy with budesonide at the lowest effective daily dose.

Therefore, some GI doctors -- perhaps with prompting from the patient (such as me) -- will prescribe a much longer budesonide taper from the outset. I am in the the 26th week of a 40-48 week budesonide taper, now down to one pill a day, and the treatment has been very effective so far.

Also note that the patient pamphlet mentions that MC can coexist with celiac disease, IBS or food intolerances. In those cases, budesonide alone may not be completely effective, and you may in addition need to consider some of the dietary changes that seem to be the primary focus of many posters on this particular website.

Thank you for the information!! I followup up with my GI in 5 weeks so I will discuss this with him.

Welcome Denise,

Also remember you will need to address dietary needs during your Budesonide protocol, otherwise that medication will be all for not.

So if you can afford it, try to do the Enterolab testing (cost is somewhere around $530 A1-C1 panel unless you are vegan/vegetarian then there is another one for that) also what is your IgA level because that will affect this testing as well. If this test is too costly at this time, then hopefully more members will chime in and help guide you to some helpful diet guidelines. We have some excellent points in the "Sticky's" area of this forum and Gabes has put together a really great starting point for beginning the process of healing in this area, but this is a must or your medication process won't be very helpful.

Another aspect you will want to address is VitD levels and incorporating Magnesium Glycinate into your life routine (these two work in tandem).

I'm sorry you have had to live most of your life with gut issues. I can remember being sensitive as a young girl and thought it was just hormones in my 20's and then migraines wouldn't leave me alone beginning in my 20's and leading all the way up into my 40's. I am now 51 and almost 3 years mostly migraine free. I say mostly because it depends on my stress level and if I have enough magnesium in my cells at the time that my 'virtual' cycle comes around as I went thru menopause at 47 (ya my DNA shows I would do this as a younger age so wasn't surprised).

Anyway, you have arrived at the BEST place on the internet for healing and getting your life back
Erica

Hi, Denise and welcome!

Our stories will vary but in the end, we come to this site because have MC, either CC or LC. My urgent diarrhea came on suddenly in my sixties with no history of issues other than constipation now and then.

I took budesonide for 5 months, slowly tapering off. Some folks take it even longer. I had immediately stopped gluten and diary and then via Enterolab, stopped eggs and soy.

The Stage One Diet on this site was a big help to me and others. As was the suggestion to take vitamin D and magnesium (not mag oxide).

We are all here for you.

Susan

Erica P-G wrote:Welcome Denise,

Also remember you will need to address dietary needs during your Budesonide protocol, otherwise that medication will be all for not.

So if you can afford it, try to do the Enterolab testing (cost is somewhere around $530 A1-C1 panel unless you are vegan/vegetarian then there is another one for that) also what is your IgA level because that will affect this testing as well. If this test is too costly at this time, then hopefully more members will chime in and help guide you to some helpful diet guidelines. We have some excellent points in the "Sticky's" area of this forum and Gabes has put together a really great starting point for beginning the process of healing in this area, but this is a must or your medication process won't be very helpful.

Another aspect you will want to address is VitD levels and incorporating Magnesium Glycinate into your life routine (these two work in tandem).

I'm sorry you have had to live most of your life with gut issues. I can remember being sensitive as a young girl and thought it was just hormones in my 20's and then migraines wouldn't leave me alone beginning in my 20's and leading all the way up into my 40's. I am now 51 and almost 3 years mostly migraine free. I say mostly because it depends on my stress level and if I have enough magnesium in my cells at the time that my 'virtual' cycle comes around as I went thru menopause at 47 (ya my DNA shows I would do this as a younger age so wasn't surprised).


Anyway, you have arrived at the BEST place on the internet for healing and getting your life back
Erica

Thank you for the information! I will definitely look into the testing. I do not know what my IgA level is.....I am an "infant" in this whole process. I was called by my doctor's office on Monday and said "You have LC....take this medicine for six weeks, meet with our dietician." I am doing all the reasearch on my own.
I don't even know WHAT a IgA level is.........???

Hi Denise,

Tests such as the celiac blood test that doctors use to screen for celiac disease, and EnteroLab uses to determine food sensitivities, are based on methods that detect elevated IgA antibody levels in samples. But some people (1 in 500) are incapable of producing normal amounts of Immunoglobulin A, so their test results on those tests are not reliable (they might yield a false negative result). That condition is referred to as Selective IgA Deficiency. It can be detected by a simple blood test that your doctor can perform. You may have already been checked before your doctor screened you for celiac disease (if you were screened for celiac disease). For people sensitive to gluten, Selective IgA deficiency increases to about 1 in 300. Performing this preliminary test will save you from wasting your money on any IgA-based tests, such as the EnteroLab stool tests. If your Immunoglobulin A level is within the normal range, then the EnteroLab test results will be accurate and reliable (unless you've been taking budesonide for longer than a few months.

I hope this helps.

Tex

tex wrote:Hi Denise,

Tests such as the celiac blood test that doctors use to screen for celiac disease, and EnteroLab uses to determine food sensitivities, are based on methods that detect elevated IgA antibody levels in samples. But some people (1 in 500) are incapable of producing normal amounts of Immunoglobulin A, so their test results on those tests are not reliable (they might yield a false negative result). That condition is referred to as Selective IgA Deficiency. It can be detected by a simple blood test that your doctor can perform. You may have already been checked before your doctor screened you for celiac disease (if you were screened for celiac disease). For people sensitive to gluten, Selective IgA deficiency increases to about 1 in 300. Performing this preliminary test will save you from wasting your money on any IgA-based tests, such as the EnteroLab stool tests. If your Immunoglobulin A level is within the normal range, then the EnteroLab test results will be accurate and reliable (unless you've been taking budesonide for longer than a few months.

I hope this helps.

Tex

Thank you! Lots of information to take in for sure!! I appreciate everyone's input!

UPDATE:
Finished my Budesonide and happy to say that I have not had any LC symptoms for the last couple of weeks.


I hope I never have to take this again (I know it's not a guarantee) because I had awful side effects from it. It raised my blood pressure over 20 pts. I am usually BELOW normal 116/78 but it increased it to 142/88. I would feel my heartbeat in the back of my head but it was a buzzing pulse feeling.

It also caused racing thoughts. I couldn't even read a book because my mind was spinning and I couldn't focus.
I asked my doctor if that was normal because I didn't see it on the list of side effects. She said she has had many patients tell her that.

So I am crossing my fingers that I remain symptom-free as long as I can.

Denise,

Thanks for the update. I also hope your remission doesn't fade. If it should, at (or before) the first suspicious sign of returning symptoms, begin taking an antihistamine each day (a 24-hour version). Many members have found that a couple of weeks of taking an antihistemine is good insurance against a relapse when weaning off budesonide. Don't wait too long, because it probably won't bring recovery if you suffer a complete relapse of symptoms. That said, maybe you won't need it.

Tex