How Will This Disease Affect My Life In The Long-Term?

[Grahm]

Vicki,

I'm pretty much a newbie here also, but now that you mention it....I started not wanting to be out in the heat 2-3 years ago. I think you are on to something.

Connie

[medic123]

This time last year anything less than 80 degrees and I was cold. Now I am too hot at 75.

[tex]

Hi Vicki,

Welcome to our internet family. No, your symptoms are not in your head. While heat sensitivity is not common with MC, it's not exactly rare, either. We have quite a few members who have that problem. It's caused by what is known as mast cell activation disorder (MCAD). In the most severe cases, a diagnosis of mastocytosis may be appropriate. MCAD can be caused by excessive numbers of mast cells, and it can also be caused by normal mast cell populations that degranulate inappropriately (IOW, they release pro-inflammatory agents such as histamine, cytokines, etc., when they shouldn't). Unfortunately, only a handful of doctors in this country are trained to recognize, diagnose, and treat these issues when they are associated with MC.

This is a very complex area of medicine about which little is currently understood, regarding digestive system issues. You can learn more about it by reading the short articles at the following links:

Here's some general info about mast cells:

The Good, The Bad & The Ugly

And here's some information on how mast cell issues relate to microscopic colitis.

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

The other possibility is that you may have become hyperthyroid (possibly due to autoimmune Grave's disease, or due to nodules on your thyroid). Has your doctor checked your thyroid function lately? A few simple blood tests should confirm or rule out thyroid issues.

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

Tex

[medic123]

I have had my thyroid checked. Since I have had IBS since I was 16, I was sent to every specialist known to man trying to dx my extreme fatigue. Finally after 4 weeks of extreme abdomen pain and D I was sent to a GI that dx MC right away. I am still trying to learn as much as I can about MC. I tried a GF diet without any results. Endocort stops the extreme D but does not really help with the other symptoms.

[tex]

I tried a GF diet without any results.

Unfortunately, achieving remission is much more complex than that. If it were that simple, doctors could successfully treat MC patients.

As you will see if you do more reading on this site, we have to totally avoid all of our food sensitivities (at the same time), long enough for the gut to accomplish some successful healing, if we want to get our life back. And this means avoiding all sources of trace amounts, because we react to even tiny crumbs that contain any amount of any ingredient to which we react.

This is not like lactose intolerance, where drinking too much milk will exceed our capacity to digest it due to limited production of lactase enzyme. Ingesting any foods to which we are sensitive will result in the production of antibodies, and these antibodies set up an autoimmune reaction that perpetuates the inflammatory state that causes MC. If you're wondering how anyone could suddenly become sensitive to multiple foods, it happens because when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and that sets us up for sensitivity to additional foods by way of molecular mimicry. IOW, during the digestive process, certain foods yield peptides that closely resemble the alpha gliadin peptide that causes virtually all celiacs (and anyone else who is sensitive to gluten) to react.

Regarding "IBS", here are my thoughts on that figment of gastroenterologists' imagination, from Microscopic Colitis (Persky, 2012):

In my opinion, the disease known as "IBS" is a cruel hoax created by gastroenterologists, and promoted to obscure the fact that they are unable to explain many GI issues that don't seem to meet the diagnostic criteria for any of the formally-defined diseases. When subjected to the rigors of scientific scrutiny, IBS can not be shown to exist as a uniquely-defined disease. Note that there is no diagnostic test to detect IBS. Instead, if all other diseases that are known to cause such symptoms are ruled out, then the default diagnosis becomes IBS. Could it be that IBS stands for "I Be Stymied"? By being able to pretend that it is a legitimate disease, GI specialists are rescued from the embarrassing predicament of having to say, “I don’t have the foggiest idea what’s wrong with you”. Instead, they can simply say, “You have IBS”. That sounds so much more professional.

In fact, recent research shows that diarrhea-predominant IBS patients show the same small intestinal laboratory markers as patients who have inflammatory bowel disease, namely, increased intestinal permeability and mast cell activation.40 And, of course, it’s well-established that IBS is a stress-driven syndrome. Obviously, these data validate my claim that IBS is not actually a unique disease. Rather, it’s either a missed diagnosis of an inflammatory bowel disease, or it is an early, pre-diagnostic stage of an IBD.

In the real world, most cases of IBS turn out to be misdiagnosed cases of microscopic colitis or celiac disease. Others are early stages of those diseases, or in some instances, simply cases of MC or CD that are refractive to treatment. When a patient doesn't respond to the treatment that has been prescribed, more than a few GI specialists try to convince the patient that she or he has IBS — the theory being that if the patient has IBS, then this explains why the treatment didn’t work, thereby assuaging the specialist’s professional ego. In most such situations, the patient doesn't respond to treatment simply because the doctor doesn't truly understand how to treat the disease. At any rate, the reality is that the disease known as “IBS” is a fabrication — a disease that was inspired by vanity.

Getting back to the main topic of the discussion in this section, in the study cited above (regarding IBS, intestinal permeability, and mast cell activation), Martínez et al. (2012) showed that clinical symptoms of IBS patients are closely correlated with mast cell activation, and with proteins known to modulate the tight junctions of the small intestinal mucosa. This is exactly how food sensitivities trigger microscopic colitis symptoms, and it also matches the way that gluten sensitivity triggers celiac sprue symptoms.

So why would IBS be considered to be a unique disease? The only reason why it does not fit the diagnostic criteria for microscopic colitis in many cases, is because it primarily presents in the small intestine, rather than in the colon. But as we saw in chapter nine, there exists a large body of research evidence that clearly demonstrates that the diagnostic criteria for microscopic colitis are arbitrarily defined, due to the fact that the disease also affects the small intestine of a large percentage of patients who have MC. In fact, it can affect any part of the digestive system. (pp. 215–217)

Here's reference 40 from that quote:

40. Martínez, C., Vicario, M., Ramos, L., Lobo, B., Mosquera, J. L., Alonso, C., . . . Santos, J. (2012). The jejunum of diarrhea-predominant irritable bowel syndrome shows molecular alterations in the tight junction signaling pathway that are associated with mucosal pathobiology and clinical manifestations. American Journal of Gastroenterology. Advance online publication. doi:10.1038/ajg.2011.472

Tex

[Deanna]

I am new to this site and have already found it very helpful. Eliminating gluten, dairy, sugars and soy have decreased my symptoms to the point that I am nearly diarrhea free. However, the tip of my tongue is very sore and I awaken every morning with severe leg cramps. (Am frightened to take magnesium.) Any suggestions?

[tex]

Hi Deanna,

Welcome to our Internet family. It's great to hear that you are already making such good progress.

Many members here get around the diarrhea risk of oral magnesium by either using magnesium glycinate (it will not trigger D in that particular form), or by using a topical form, such as magnesium oil, lotion, etc. Magnesium can be easily absorbed through the skin, so some of us spray it on, or rub on a liquid form, or soak our feet or our entire body in an Epsom salt solution/bath. Some types irritate the skin, while others are much less likely to do so. Most people take a shower to remove the residue if it is irritating, after it soaks in for a while.

I've read that a deficiency of certain B vitamins can also cause a sore tongue. B3 (niacin) is often mentioned, and others claim that B-9 (folic acid) caused their tongue pain.

FWIW, dehydration can also cause tongue pain, and it is a common cause of leg cramps.

Good luck with your treatment, and again, welcome aboard.

Tex

[Adele13348]

Tex,

Has anyone ever tried Reiki as a stress reduction device? I learned Reiki a few years ago and it's wonderful for a deep relaxation. It can cure a migraine for me minutes. You have to be trained to do this (there are multiple levels) but I am only a Level I Reiki. Just a thought. I'm thinking of restarting my daily routine plus some yoga in hopes it will hasten healing.

Adele

[tex]

Adele,

I recalled reading about it, but it has only been discussed rather briefly. I did a quick search and found the following threads:

Has anyone tried Reiki?

Hi EVERYONE!!! I have missed you all!

LC, pericarditis, thyroid, infertility-claiming back my life

So what the heck do I eat?

Anything that we can do to relax and reduce stress is almost always beneficial for helping to prevent and reduce the symptoms of this disease.

Tex

[gac]

Being diagnosed with MC came as a shock. Was violently sick for 2 weeks at home until severe diarrhea put me intermediate intensive care at hospital for 6 days while they ran tests after test after test, trying to figure out what is wrong with me. I felt like an Ebola patient, the diarrhea was so severe, and they kept asking me had I traveled outside of the USA or been exposed to anyone who had. Finally the upper/lower GI and colonoscopy with many biopsies showed what is wrong. The doctor said only the biopsies showed the problem so I think back to my dad, who is now deceased, who suffered from similar problems and was never diagnosed. Maybe no biopsies were ever done when he had similar GI tests. So sad he suffered with this for at least 30 years but then he was so bull headed he would never have changed his diet at all and as his mind started slipping in his old years, he would never have been able to remember NOT to eat certain foods, although all of us in the family tried for years to tell him certain foods were triggering his problems. So now I have MC and I am adjusting my own life. I have been gluten free for about 6 years (although I admit to cheating on some foods, like Chinese delivery food, with only minor problems). Will now be rigidly gluten free. Hospital knew I was gluten free but was feeding me clear broth with gluten in it. BEWARE OF HOSPITAL FOOD!!! Not all hospitals can handle gluten free diets well. I had arguments at every meal about what I was being fed that was making me sicker while I was in the hospital yet they would not allow outside food to be brought in to me.

I am careful about what I am eating, adding new foods one day at a time, keeping a log of everything I eat, how often I go to the bathroom and my fluid intake. I find doing this helps me look back when I have a bad day and wonder what might have triggered it. The other day was a really bad day and I think it was a piece of hard candy that I ate - I knew I shouldn't have eaten it but was so hungry for something sweet. But it was the only thing new I ate that day and I was violently sick for 24 hours. And I had no way of knowing what was in that piece of hard candy - couldn't read the contents as it was a single piece and I didn't have the bag it came in.

Someone on this blog mentioned sensitivity to heat. I agree with that person. I find I cannot let myself get overheated. That is a serious problem living in hot-as-heck Atlanta in July. I had my first "outing" since being diagnosed and went to an outdoor concert to other night. Had to keep ice packs on my wrists and neck to tolerate the evening heat as I could not stop sweating. I don't know if that is a side effect of the Entocort.

I guess I was hoping that MC would gradually improve but I don't know how long it takes for my insides to heal. What is healing time????? Weeks? Months? Years? Or will I be forced to wear an adult diaper as insurance every time I leave the house and take my "diaper bag" with me, afraid of all the things that could go wrong if I am more than 10 steps from my bathroom? I have been tethered to the bathroom for 5 weeks but I realize with MC I will be tethered for life. Will I always have to wear a diaper? I am 65 and this is not what I thought my life would be like. No wonder people end up depressed but so far I am not depressed, just frustrated. I wish I knew someone who lived nearby who had this same problem so I could talk honestly to this person but I don't so this forum is all I have. So glad it exists.

[Adele13348]

I, too, am experiencing overheating. Several times while we were in Arizona I got very hot and could not cool down. Excessive sweating that would not stop.
I wasn't taking Entocort at the time. Another side effect of MC?

[tex]

Hi gac,

Welcome to the board. No, you will not have to wear diapers forever. After you fine tune your diet, and give your gut sufficient time to heal, you will find that life becomes enjoyable again. And you won't have to worry about the location of the nearest bathroom whenever you go out.

We have at least several members who live in Atlanta. If you will post on the main message board, you may be able to get together with one or more of them to discuss the fine points of living with the disease. Most members tend to move on and no longer post (or rarely post) after they get their life back, so if you don't get any response, please let me know and I can provide you with a couple of email addresses to get you started.

The inability to properly control body temperature is commonly caused by 2 different issues, that have very similar clinical symptoms, namely, hyperthyroidism and magnesium deficiency. I am very familiar with this because the inability to control my body temperature was one of my most aggravating symptoms last spring when a reaction triggered by an antibiotic depleted my magnesium supply. I would find myself sweating like a pig at various times of the day or night, for no obvious reason. Increasing my magnesium supplementation resolved the problem (and a lot of other problems, including erratic blood pressure and heart rate excursions).


Adele,

Like you, I could stand in front of an air conditioner and not be able to cool down. I checked my temperature while this was going on one morning, and I found that my body temperature was low, at 97.8 degrees, but I was sweating profusely, and I felt as hot as a bear standing in the sun on a hot August day. Magnesium is a vital electrolyte.

Tex

[hoosier1]

I use Michael Mahoney's CD's for Hypnotherapy for IBS for stress reduction and relaxation. I know that we don't have IBS per se, but his calming voice and long sessions are very relaxing and relevant to all of us. I especially like using them when I fly (with a good set of noise canceling headphones of course). I have also seen a local hypnotherapist over the years so I am a believer in this therapy. Give Michael Mahoney's hypnotherapy a try. I am sure you will appreciate the break from life.

[jessica329]

knowing what not to do so we don't disturb the sleeping giant, lol.

I love how you worded this! I'm trying to put my giant to sleep

[rosemaryrstevenson]

I am happy to find this forum as I have felt like many of you, that nobody has a clue what collagenous colitis is or how to deal with it, including my doctors. I am looking for some advice, and have just recently ordered Wayne Perksy's book, so hopefully will find some answers when that arrives, in addition to finding answers here.
This journey began over a year ago, and I entered it in disbelief, since I have been a healthy active person all my life. I exercise daily, including aerobics, weight training, and yoga exercises, in addition to walking and hiking regularly. I have never had a weight issue, and except for being lactose intolerant for the past 35 years, could eat just about anything. I am not a drinker, other than a glass of wine once in awhile.
A little over a year ago, uncontrollable diarrhea began, which was strange for me, since normally I had to be sure to take metamucil daily to avoid constipation. I went to my GP and she referred me to a gastroenterologist who immediately put me on a FODMAP diet, since I had recently had a colonoscopy which was clean. I stayed on the diet for a few months with very little improvement, and I lost 12 pounds- which I didn't need to do. I had a SIBO test, which indicated some evidence of SIBO, but the doctors didn't think it was enough to be significant. [Later had a second SIBO test again confirming some evidence of it.] Then I had a diagnostic colonoscopy which showed collagenous colitis. The docs immediately wanted to put me on budesonide, which I wanted to avoid, so I contacted a functional clinic. I began a 6 month regimen of lab testing [very thorough], supplement use, and eventually LDN regimen. To make a long story short, the LDN was effective for about 4 months. My diet continued to be restricted- no gluten, no dairy, low fiber, low sugar, low carbs. Not easy, but seemingly effective. Then I went on holiday, ate too many lectins, and have now been in a setback/flareup of uncontrollable diarrhea for 3 weeks. I began on budesonide and stopped the LDN 7 days ago and as of yet have had very little improvement.

My questions right now to the group, knowing you're not physicians, so just opinions based in experience, please:
1. How long should it take for the budesonide/Entocort to show some positive effect [aka reduce/eliminate diarrhea]?
2. Would adding the LDN back in while taking the steroid be beneficial? Anyone have this experience?[My gastro doc is clueless about LDN]
3. I know now that I must also be careful about lectin consumption but is there anything else I should consider eliminating?

I am taking B12 shots once a month for a deficiency, in addition to daily B complex, also daily take a bone support which includes D3 [already have some osteoporosis], daily take cod liver oil, and a probiotic, and liquid turmeric.

I know people on this forum have been in a similar spot to my situation, so I look forward to beginning a conversation.
Thank you for your consideration and time.