The Health Activist’s Writers Month Challenge – Day 25 Learning


Share something you learned from another Health Activist (that everyone should know).

First I think you need to read this post from Amanda http://stopthinkingstartwriting.blogspot.com/2013/04/we-know-our-bodies-best.html

I am using this post as a good example.  I have known Amanda from online only.  We were introduced through another activist.  When we were introduced, Amanda had been sick for some time and couldn’t seem to find a diagnosis.  She presented with symptoms of IBD but no GI could seem to find anything.

Throughout time, she would have her good days and her bad days.  But through it all Amanda would not give in.  Even when doctors would tell her nothing is wrong she would fight and look for another doctor.  Eventually some diagnoses would come it but they wouldn’t be the big one she was needing.

Now, she finally has the diagnoses she was waiting for and reason everyone should know this.  She has Mast Cell Hyperplasia (consistent with Mastocytic Enterocolitis).  Now most of you, and I was one of them, probably have never heard of these terms..but Mastocytic Enterocolitis is a form of IBD.

Many people think IBD is only Crohn’s Disease and Ulcerative Colitis.  Those are the 2 main diseases but there are others.  ME is one of those others.  I have often only talked about the former two.  Now I have another disease to learn about and possibly talk about.

I look forward to learning another form of IBD and I look forward to our newest IBD Warrior and her challenges to now beat this disease and heal up.

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This is being added after this post was already posted.

I have done some research…and was shocked to read what I did.  Turns out Mastocytic Enterocolitis (ME) isn’t IBD.  It is similar to IBS.  ME isn’t chronic and is very treatable.  Here is one link that is reputable:

http://rarediseases.info.nih.gov/gard/10176/mastocytic-enterocolitis/case/24223/case-questions

Amanda, I don’t know if maybe you were led astray by a doctor.  Just know that I and many others still care and hope you do get better.  From the looks of it, you will and real fast.  The treatment is a simple one and I wish all disease were easily treated like ME.

I am sorry if I offended anyone that took offense for me saying it was IBD.  I didn’t do the research ahead of time and just got excited that Amanda had a diagnoses.

4 comments on “The Health Activist’s Writers Month Challenge – Day 25 Learning

  1. Very easy to make a mistake Jeff on this one, as there is many conflicting information on websites about it’s classification. but this is still a rare disorder and that classification could change as they find out more about Mastocytic Enterocolitis. I was also informed that it was MIBD. it’s still a nasty condition to have and I have compassion for people struggling to get a diagnosis with any rare condition; IBD or anything else. nothing worse than being told we cannot find anything wrong. you have my admiration for all what you do for the IBD community. mistakes will always be made, but it’s how we deal with them, is the most important issue.

    • I agree that ME is still new and can be nasty. I feel for anyone that suffers from it. I don’t deny that it is real and that people don’t suffer from it. I think Amanda has been very brave in her fight and I still wish her well and will support her in her battle.

  2. mendyvarner says:

    I have both ME and Crohn’s. I have always been told BOTH are IBD’s. I was also told to follow a low histamine diet, and to take a combination of class 1 and class 2 antihistamines. Some other helpful info is here : http://ezinearticles.com/?Mastocytic-Enterocolitis—A-Patient-Guide-to-Mastocytic-Inflammatory-Bowel-Disease-%28MIBD%29&id=967681

    Hope you are all well! :)

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