The Big D

My body never fails to amaze me, and not always in a good way.  I have been constipated my entire life due to my Ehlers-Danlos and the only time I’ve ever had diahorrea has been when I’ve had a tummy bug.  Until the past two months, when we appear to have become intimately acquainted.

Most people with Mast Cell Disease have diahorrea for reasons not fully understood and since becoming allergic to antihistamines I’ve joined their ranks.  It sucks.  You’re proper uncomfortable when you are constipated but at least you don’t have to spend your life wondering where the nearest toilet is or with your insides gurgling like a washing machine on the spin cycle.


Despite being constipated my whole life, I’ve never had a huge amount of wind either up or down.  All this has now changed and I’m farting so much I could launch a hot air balloon.

I could cope with all this, just, if it weren’t for the pain.  I hurt from my throat to my bum.  My entire insides feel inflamed and the pain is sometimes so acute I’m literally doubled over.  It’s been so bad I’ve actually been scared there is something else, something more sinister, going on but you can bet if I had every investigation under the sun they’d find nothing other than inflammation and it’s not worth months of stress and hospital appointments just to confirm something I already know.  According to research, stomach pain is in the top three symptoms for people with Ehlers-Danlos and experienced by up to 85% of sufferers.  Add MCAD to the equation and I’m basically stuffed.

I’m still having random mast cell reactions, sometimes mild, sometimes not so mild, after eating.  Palpitations, wildly fluctuating blood pressure, severe nausea, cramps, severe fatigue, anxiety, euphoria and all simply because I’ve eaten, or in some cases, drunk something.  My reflux is horrendous, ditto with the nausea, I was wide awake and watching telly at 4am last night (again) and my brain feels like its been trampled by a herd of wild elephants.  I do not have my happy head on.

I am drinking enough ginger, peppermint and camomile tea to sink a ship and wearing my TENS machine on my stomach for the pain, which is actually rather weird and uncomfortable and I’m not sure helps in any event.  I dread meal times and the only relief I have is the four hours or so I manage to sleep at night.

Over the years I’ve come to terms with my M.E. and my EDS.  My body does its best to keep the equilibrium and, as long as I stay within my limits, both conditions are manageable.  Not so with MCAD.  It feels like the enemy.  Every single thing which might help, from antihistamines to steroids, mast cell stabilizers to supplements, I react to – the disease thwarting the very things which I know would bring me relief.  No matter what I do it always has the upper hand and there are days when fighting it is just so exhausting I simply want to give up.  Enough with the never ending suffering already.

 

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5 thoughts on “The Big D

  1. Guenevere

    Jak, I am continually amazed at how quickly one’s colon can become the dictator of one’s life. I have IBS-D, and it reacts to all kinds of things; most recently, salad–I might as well skip drinking the stuff they prescribe for a colonoscopy and just eat some fennel bulb two hours beforehand. The anxiety I have around my gut’s behavior is sometimes bigger than any other concern in my life. “What will happen next?” “Was that just a regular tummy rumble or is something going to happen?” “Oh no, I’m visiting someone’s house and not only have I just spent ten minutes in their bathroom, flushing like to crazy, but now I have to turn around and head right back in” etc. It seems with the package that is EDS, the fix for one thing is often the very approach that will throw the other thing off kilter. I am very sorry that you are feeling so stuck and without options and that your digestive system is finding new ways to disrupt your life. I’m thinking of you.

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    1. Jak Post author

      Thanks Guenevere 🙂 Until three years ago I never had any issues with my stomach and I look back on those days now and wish I’d realized quite how lucky I was! Having permanent gut ache makes you proper miserable and, as you say, your whole life revolves around toilets 😉

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  2. Elizabeth Milo

    I can’t believe you’re suffering with diarrhea! I’ve never had diarrhea. As you know, I’m chronically constipated. How bizarre… And I’m so sorry about the pain you’re in. I wish I had meaningful advice. I just hate that the majority of our thoughts are focused on our guts and bowels.

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