Tag Archives: diahorrea

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.



Peri-menopause: I have no words!

Soooo, I started my period today.  It’s day 25 of my cycle.  For the first three months of this year I was back to a 28 day cycle, but the last two months I’ve been down to a 25 day cycle, just to keep me on my toes.

Yesterday I felt OK(ish).  I was extra tired, had cramps and (TMI warning!) my bits were sore because the environment ‘down there’ isn’t as moist as it used to be and my undies chaff, but I still felt well enough for a potter round a nearby plant nursery with my friend.  Went to bed last night and all was fine.

Woke this morning at 5am, which is ridiculous.  So I put my talking book on (Michael J. Fox’s memoir ‘Lucky Man’ which discusses his early onset Parkinsons Disease) and must have dozed back off because the next thing I knew it was 7.30am.  Now that’s more like it.

Got up to feed Bertie, made myself a brew, and went back to bed for Bert’s morning tummy rub and to ‘come to’.  But by the time I reached the top of the stairs I knew something was amiss.  I started to sweat.  Everywhere.  It ran in rivers off my head and down my back.  And then I felt all the colour draining from my face and the world started to swim.  Hmmm, I think I’d better lie down before I fall down.  I collapsed onto the bed like a rag doll.  Bert nudged me for a bit then decided he obviously wasn’t getting his tummy rubbed and promptly went to sleep.  Typical bloke 😉

I felt horrendous and like I was going to pass out, even though I was lying down.  I have a ceiling fan above my bed, so I turned that on.  It felt lovely and cool on my skin, but poor Bert started to shiver, so I covered him with my half of the duvet.  I also had god awful period pain and my hip bones felt like they were on fire.

I keep a blood pressure monitor under my bed, so I fished it out and took a reading.  79/45!!!!!  And my pulse was 43.  WTF?!

I then realized I needed the loo.  Urgently.  As I sat on the throne, sweating like a roasting hog, I didn’t know whether I was going to poop, puke or pass out.  This is when living alone can be quite scary.  For the next hour I staggered between my bed and the loo, with horrendous diarrhea and chilling sweats.  Even my lips were white and I couldn’t sit upright without wanting to pass out.

Then my period actually arrived and over the next two hours things mercifully started to calm down.  I put my TENS machine on both my back and stomach, so the cramping pain lifted slightly (though as I’m typing this I still feel like someone is inside my uterus with a blow torch).  I managed to have a drink.  And my BP came up to a more respectful 104/54 (which admittedly is my usual BP for when I’m sleeping, not awake and upright).

It’s now evening and I’ve finally managed to eat something.  I still feel rubbish, but it’s a ‘normal’ period-induced rubbish, not the I-think-I’m-about-to-die rubbish I felt this morning.  I’m going to run a bath now because I feel truly icky – I just hope the heat doesn’t send my BP plummeting too far again.

I have no idea what this was all about and I hope it doesn’t happen again any time soon.   When is the menopause going to happen?  When?!  I just want my periods to be over with because all this malarkey for the past 36 years has been like some kind of torture!


My arse!

I know anyone living outside the UK, who’s never seen the Royle Family, won’t get the humour in the title but suffice to say this post is about my bottom habits.  If you’re squeamish look away now 😉

One of my earliest memories is being pinned down on the bed, screaming blue murder, while my mum shoved Vaseline up my back passage to help me poop (yes, I know it’s barbaric and thank God drugs for children have moved on since the seventies).  I didn’t know I had Ehlers-Danlos until I was 42 years old and by then I’d had a lifetime of not being able to poo.

I wasn’t much into food as a kid and if I’d had my way I would have lived on Rice Krispies, Ready Brek, dippy eggs and sweets.  I hated fruit and hated veg even more.  What I also didn’t realize at the time was that I struggled mentally and emotionally with the concept of eating meat.  It didn’t leave much!

My parents were often demented with trying to get me to eat more and another of my earliest memories was being made to sit at the dining table and told to finish my meal until I literally retched.  I know my Dad thought he was doing the right thing, but to be honest it just made me even more food averse.

As a kid, my inability to poo was put down to my poor diet.  I was constipated in the traditional sense, ie I didn’t go to the loo for days on end and when I did I had to strain really really hard.  I’ve been known to sit on the throne for up to 2 hours and used to make my Mom come and sit and talk to me to relieve the boredom 😉  When the poo was finally expelled it was hard, lumpy, pale in colour and floated to the top of the toilet pan.

When I was in my late teens I became vegetarian.  I knew that, in order to obtain a good range of nutrients, I’d have to eat a wide range of foods and became much better at eating fruit and veg.  By the time I was in my early twenties, and developed ME, I think I had a pretty good diet.   I still didn’t poop.

The texture of my poo changed though and I was no longer constipated in the true sense of the word.  I still didn’t go to the loo for days on end, but when I did my poo was a nice dark brown colour and a good, smooth texture.  It was still really hard to pass though.  Of course, what I didn’t know then was that the intestines of people with EDS are very stretchy, and instead of passing poo along in smooth contractions mine was getting stuck along the way, particularly at the Ileocecal valve which joins the small intestine to the large intestine.  As my poo backed up it got bigger and bigger due to the stretch in my intestines and by the time it reached my bum it was the size of elephant dung.  Passing it was often a bit like giving birth, with me straining until I worried the veins in my head would pop!

I’ve tried all sorts of laxatives, and used to drink gallons of prune juice, both of which are no longer an option.  Due to my mast cell disease laxatives give me awful palpitations and prune juice is not on my low histamine food list.  Consequently I know I’m going to just have to live with poo problems.

Last week I had a particularly difficult to pass poop which was so big that when it came out it tore my bum hole (TMI I know!).  Not only that it has given me a pile.  Eugh!!!!!  It’s popped out and is sitting smugly on the edge of my anus, all swollen, slimey and itchy.  Middle age has reached a new low 😉

Most people with mast cell disease have diahorrea.  The intestines are packed with mast cells which, when activated, cause runny poop.  Dr S said that in my case, however, my EDS is stopping that from happening and I’m getting the opposite problem.  Out of the two I’d choose constipation as at least I don’t have to worry about rushing to the loo when I’m out and about.  I also think people with diahorrea tend not to absorb nutrients etc. from their food well, as it rushes through their intestines too quickly.  However, people whose poop sits in their intestines too long can then get fermentation which isn’t good for you either.

I appreciate a post on poop isn’t exactly festive but my first ever pile is a milestone Event which I thought I would share with all you lucky readers 😉  Happy Christmas My Arse!