Tag Archives: GERD

Endoscopy no.2

Before I start this post I must make mention of the terror attack in Manchester last night.  I literally welled up when I turned the telly on this morning at the thought of the grieving families who have lost their precious children, and the survivors who will have to live with horrendous blast injuries for the rest of their lives not to mention the psychological trauma.  I have no idea what the terrorists hope to achieve.  It’s not like the entire United Kingdom is suddenly going to go “OK, we’ll all become radical Muslims” now is it?  And let’s not forget that Manchester is a multi-cultural city with a large Muslim population and the concert was filled with brown children as well as white.  There is no faith which supports taking a life and even if there were it wouldn’t advocate taking the lives of others with the same faith.   The world’s literally gone mad.

So, yesterday was torture endoscopy day.   I wasn’t allowed anything to eat past 8am and eventually went 11 hours without food.  I was only allowed water until 12 noon, so went without a drink for 5 hours.  This is not good for someone who drinks like a fish just to stay upright and eats every 3 hours or she feels like she’s going to pass out, and driving 60 miles in that state probably wasn’t all that safe!

I went on my own to the Hospital as these days I have no-one to go with me.  It’s fine and I’m used to it.  My Dad did offer, but it’s more stressful trying to keep my eye on his wanderings and keep him entertained than it is to go alone, plus I don’t trust his driving despite the fact he recently re-passed his test.

Three days before, I’d had a phone call from a nurse who went over all my health questions with me on the phone.  Despite this, on arrival at the endoscopy suite I was taken into a room and asked all the same questions – why, exactly, and what a bloody waste of NHS money.  Having arrived at the hospital I had been told by the nurse on the phone to report to Reception, but they didn’t even take my name and just told me to go and sit in the Endoscopy centre – the system is a shambles.  I then sat in the waiting room for the next 1½ hours for reasons I couldn’t work out.

I was told I was having the procedure done by Debbie, the endoscopy nurse, but was eventually called in by a youngish man, who told me he was the endoscopy doctor – why they’d swapped me I have no clue.  He was vile.  Truly.  He took me to the tiniest room on the planet, then said
“so, you have Ehlers-Danlos!  Can you do party tricks?”
I was taken aback and stuttered “erm, well I used to be able to but am too old now”.
“You’re not old!” he exclaims.
Me, starting to get irritated “as you age you stiffen up, and anyway doing party tricks damages your joints so isn’t recommended.”
Him: “Have you had children?”
What the fuck has that go to do with anything? “No.”
Him: “Oh, cos I was wondering if they just popped out like shelling peas” he grinned.
Fuck off you dumb ass.  You’re making light of a disease which causes me untold daily pain and has wrecked my life.
Him: “Can I ask you a question?  What’s your life been like?”
I’m totally flummoxed by this and reply “in what way?”
Him: “Well, how has it affected you?”
I know from his attitude he doesn’t give a fuck how my life has been affected and I have no idea why he’s asking.  I just want to have my endoscopy because I’m terrified I’m going to have anaphylaxis and die.  So I reply “I developed M.E. after having meningitis, was bedridden for a decade and nearly died, so although having EDS is shit at least I can function which in my world is brilliant.”
Him: “What do you mean M.E.?”
Me: “I also have M.E.”
Him: “What does M.E. stand for?”
Me: “Myalgic encephalomyelitis”
Him: “Just checking you knew.”
Me in my head: “fuck off you weird twat.  As if I wouldn’t know the name of the disease which nearly killed me and has decimated my life for over 2 decades.
Him:  “You also have mast cell activation disorder.”
Me:  “I do.”
Him: “Is that confirmed or just probable?”
Me: “It’s mostly only ever ‘probable’ in the UK because we don’t have access to the tests we have in the States to confirm diagnosis.”
Him, laughing: “we have in the States?”
Me: getting pissed now.  “We don’t have access to the tests they have in the States.”  I’m anxious, exhausted, ill, dehydrated and haven’t eaten for hours.
Him: “Rights, let’s go.”  Then, as we’re heading up the corridor to have the procedure “you do know this can cause perforation and infection don’t you?”
Me: “Thanks for that, it’s not like I wasn’t already nervous”
Him: “Well I have to tell you these things”
Me: “Not 30 seconds before you do it you don’t.”

In contrast, the two nurses were absolutely lovely.  Before we got started, though, I asked the doctor if he could do some biopsies to be tested for mast cells as I think they might be causing my issues.  To cut a long, shitty conversation short, in which I’m made to feel like a hypocrondriac who has made her disease up, he says no.  In fact, the entire procedure took less than 3 minutes – he went in, had a look around, and came out again.  No biopsies of any description, not even of my pre-existing 11 polyps which haven’t been checked for cancer for 5 years.  What a waste of time.

For anyone who hasn’t had an endoscopy before I have to say this: it’s one of the worst things I’ve ever had done, and I’ve had a shit load of stuff done over the years.  I’m allergic to sedation, so can’t have it.  Instead they spray your throat with local anaesthetic, which makes it burn and then makes your entire oesophagus numb and feel swollen like when you have lidocaine at the dentist.  Swallowing is really weird and you feel like your throat is paralysed.  They lay you down on your left side and put a bite guard-type thing in your mouth with a hole in for the endoscope, which is a flexible plastic pipe with a light on the end.  It feels about a foot wide but is probably only about half a centimetre.  The lovely nurse rubbed my back and held my hand as the camera was inserted, but trust me when I say they have to be brutal to get it past your voice box area and you gag like your life depends on it, literally feeling like you’re choking, and your instinct is to try and pull it back out and to stop you doing that is the real reason why the nurse holds your hand 😉  It does feel like you can’t breathe with the tube in your oesophagus but of course you can – you really have to focus though, battling against panic, and breathe deeply in and out through your nose.  There’s another brutal shove, with gagging, choking and coughing as they get it through your diaphragm and into your stomach where you can feel it moving around.  It’s not painful but very very weird and uncomfortable.  Another brutal push and more gagging as it goes into your duodenum, where again you can feel it moving around.  And the whole time you feel like you can’t breathe and are choking to death.  Lovely.

My first endoscopy took about 20 minutes as they took pictures and loads of biopsy samples, but as I said earlier this time he was in and out within minutes.  Lots more gagging, coughing and choking as the scope comes out and it’s all over.  Thank God.

Apparently all is fine.  I have a tiny hiatus hernia not even worth mentioning and no inflammation.  How I can’t have inflammation is beyond me, being as though I have acid burning my oesophagus every day of my life and have had for several years now, but according to Speedy Gonzales everything was “plum normal”.  I fucking hated him.

Knowing my throat swelled last time I was fully expecting to be kept an eye on for at least half an hour, maybe longer, afterwards but no such luck.  I got up off the bed and was out the endoscopy suite literally 30 seconds after he took the scope out.  I did ask “what happens if my throat swells like last time?” as I was being escorted out the door and he just said “see a doctor”.  Thanks for that when my local cottage hospital doesn’t even have doctors on staff out of hours.

Luckily there was no significant swelling this time – it was such a relief.  I did spend the night feeling like I had the worst case of tonsillitis ever, swallowing past razor blades, and my throat is still really sore this morning but I managed to eat some soft food (mashed potato and carrots with salmon) for tea.

The Doctor did say that being as though all appeared ‘normal’ he wants me to go back for an ultrasound on my gallbladder so I’m now waiting for an appointment about that.  I then have to see the Gastroenterologist, who usually sees patients before all this stuff is done but wanted me to have the tests first so he had the results, which I can understand but if I’d seen him first he could have ordered the mast cell biopsies *sigh*.

I’m fairly sure I know what my pain is all about, but as usual Doctors don’t listen to me and aren’t willing to do the necessary investigations.  If it’s not something typical, like a hernia or an ulcer, they’re flummoxed and not interested in investigating further.  If the Gastroenterologist fobs me off I’m going to ask if it’s possible to be referred to an EDS specialist, ie Qasim Aziz down in London – I’ll probably be told no but it’s worth a try.

I’m tired, bruised and disillusioned this morning but at least it’s over with and I survived unscathed 🙂  My advice for anyone else having an endoscopy would be this: if you can, have the sedation.  You apparently can still feel the procedure but it’s not half as traumatic as having it done fully conscious!


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.


Weekly roundup

Geez this week has gone quickly – I can’t believe it’s Sunday again already!

I’m starting with some good news for a change.  After 9 months of problems my hips finally seem to have settled down.  I am now able to walk without pain and even bending and twisting in the garden every day this week hasn’t bothered them – I am one happy chick 🙂 .  They are, and probably always will be, stiff and I’m resigned to never again being able to sit cross-legged or sleep in my usual comfortable position, but the nagging, shooting, stinging, aching pain has gone and for that I am truly thankful.

The other good news is that I’m still managing without any H2 anti-histamines for my GERD after I became allergic to the tablets I’ve been taking for the past 2 years.  The first couple of weeks were really tough, with incredibly painful rebound acid production, but this seems to have settled down to a mild/moderate pain which I’m hoping to just be able to live with.  It’s not pleasant, but it beats the anxiety of popping a pill every day and wondering if all hell is going to break loose.  The biggest downside of having reflux is the godawful taste in my mouth, which makes me self-conscious that I have bad breath when I’m talking to people :-/ .

The bad news (you knew there’d be some 😉 ) is that since my drug reaction my mast cells have been super twitchy and I’m having some mild reactions every time I eat.  Mild tachycardia, anxiety, sudden low mood and mild stomach cramps, plus pins & needles in my bum and persistent nausea.  Luckily they only last about 10 minutes (well, apart from the nausea which I sometimes have all day) so I’m coping, but it’s not fun and I hope it all settles down again soon.  I’ve found in the past that once I’ve had an anaphylactic episode my mast cells can become super alert for months, so the reactions aren’t unexpected.  I’m not reacting to any food in particular, so I’m thinking the culprit is the act of digestion itself which produces histamine and being as though my histamine bucket is obviously already full the digestive histamine is causing problems.

On the plus side my butt hive outbreak has cleared up, my sleep isn’t as disrupted and my constantly runny nose has calmed down a bit, so I’m hopeful this latest flare is on the wane (famous last words!).

I have a very exciting week ahead as Wednesday is our Camera Club’s Annual Dinner and presentation night.  I’m receiving a trophy for winning the Millennium Cup Competition, and also found out this week I won Beginner’s Digital Image of the Year with the same picture 🙂 .  It’s the first time I’ve been out for dinner in the evening for………actually I can’t remember the last time, maybe my 40th birthday seven years ago.  I just hope adrenalin keeps me going and I don’t react  too badly to my meal!  I’ll let you all know how it went.



Weekly roundup

The past week has had it’s fair share of ups and down.  I’m still not taking any medication for my GERD, although I’m swigging Gaviscon Advance like it’s water.  The replacement tablet prescribed by my GP wasn’t available anywhere, so she had to change it and even that drug was only available from one pharmacy.  It had to be ordered in, so I’m currently waiting to pick it up.  To be honest, though, I don’t hold out any hope of being able to tolerate it.

I have the worst outbreak of butt hives I’ve had in ages.  It could be that the H2 blockers were doing more than just helping my stomach acid.  Or it could be down to the fact the Birch pollen season has started so my histamine burden is currently way high.  Or it could be down to the emotional stress of the past couple of weeks.  Or a combination of all of the above.

I also have a really sore throat.  Due to my M.E. I had a permanent sore throat for about 15 years, but now no longer suffer.  So I’m wondering if this is M.E. related or whether I have a mid throat infection (it’s much worse on one side than the other, which points more to the infection theory).  It’s impossible to tell if my glands are up – I had Glandular Fever when I was 13 and my glands have been like rock hard golf balls ever since.

My Mum hasn’t been good this week either.  She had to be on 3 different types of antibiotics last month for a chest infection, which has now given her the worst case of thrush I’ve ever seen.  The cream she was given isn’t touching it, so it looks like she might need oral anti-fungals.  But she’s now started coughing again, so is on yet another lot of antibiotics which will make the thrush problem worse.   She’s just so fed up of the whole merry-go-round and seems really down – I don’t blame her.

However, the week hasn’t been all bad – in fact, quite the opposite.  The first week I stopped the H2 blockers for my reflux the pain was like nothing on earth, possibly from rebound acid production.  But this week it’s actually settled down to at least an acceptable level and I no longer feel like I can’t manage it.  I’m not saying it’s any fun, but it’s (kind of) bearable.

The weather has also been great this week.  Still in single figures, but dry and spring-like.  I’ve even managed to potter about in the garden for half an hour most mornings doing a bit of pruning and having a general tidy up after winter.   Being amongst nature in the fresh air never fails to lift my spirits and I sat mesmerized watching some sparrows taking in twigs and straw to my nest boxes.

Having been largely stuck in bed for the past 2 weeks it’s given me the opportunity to start a new blog (my friend K says I’m a blog addict and I need professional help 😉 ).  As many of you know, I have a passion for amateur photography which started 4 years ago when I adopted Bertie.  I’ve never had a lesson in my life and when I first started hadn’t got a clue what I was doing – it took me an entire year just to decipher the manual of my DSLR camera 😉 .   In addition, none the information I read either in books or online seemed aimed at a total beginner and assumed all sorts of knowledge I didn’t possess.  So it’s been a really steep learning curve trying to figure it all out.  To save anyone else going through the same trials I thought I’d start a blog on what I’ve learned and share my experience with others interested in improving their photography skills.  The site is called ‘The Amateur Photographer’ if anyone is interested – it’s best to start at the beginning as the posts all build on each other.

It was Mother’s Day here in the UK last weekend, so I managed to pull myself together enough to take my Mum out for lunch (well, OK, technically my Dad took us all out for lunch as I’m broke and couldn’t afford the bill).  With my stomach problems I thought it would be a nightmare, but actually I coped alright given the circumstances.  My Mum was sent some flowers off my brother, so I thought I’d leave you with a picture of a Ranunculus from the bouquet – isn’t nature wonderful?


I ignore medical advice….. a lot

When I was bedridden with M.E., the only way I could get out for medical appointments etc. was to use a wheelchair.  When I first discussed this with my GP she was dead against the idea.  Her exact words were “you don’t want to go down that route because you’ll go off your legs altogether”.  I was too ill to argue at the time but I should have said “in case you hadn’t noticed, I’m already ‘off my legs’ or I wouldn’t sodding need a wheelchair would I?!”.  I totally ignored her, hired a wheelchair on the occasions I needed one, and later when I was slightly stronger progressed to a mobility scooter.  I loved my scooter (still do) as it gave me the freedom to get around without having to spend a week in bed feeling like I was dying because I’d used every ounce of energy my body possessed actually walking somewhere.  Using a wheelchair didn’t hinder my recovery from M.E. in any way and my current use of a mobility scooter for walking long distances doesn’t make my Ehlers-Danlos any worse either.  What it does do is enable me to walk my dog for miles on a beautiful summer’s day, drinking in the scenery, boosting my mental and emotional health and making me glad to be alive. Without my scooter I can walk about 10 steps before my back, hips and knees starting giving me gyp.

After my Ehlers-Danlos diagnosis in 2010 I was given physiotherapy.  I tried for an entire year to do pilates to strengthen my core and all it did was give me muscle pain so severe I felt like my whole body was on fire.  M.E. and exercise simply don’t mix.  My only option to stop my ligaments over-stretching causing sprains, strains and joint sub-luxation was splints and braces.  Again, the medical profession are against them, saying they will weaken muscles and lead to further disability.  I ignored them, because to be honest I don’t really understand the argument.  My joints over extend.  Wearing braces doesn’t stop the joint from moving, it just stops the joint from moving too much.  I still have an almost full range of normal movement, I just can’t hyper-extend.  Wearing my splints and braces enables me to take part in tasks that, otherwise, would either be impossible due to ligament weakness or cause injury.  For me, it’s a no brainer.

Rest is another bone of contention within the medical profession, yet there are times when it’s absolutely crucial.  As far as M.E. is concerned, rest is the no.1 treatment.  It’s as vital to recovery as insulin is to a diabetic.  Anyone who says otherwise needs to be avoided like the plague.  As far as EDS is concerned, in 2013 I spent 3 months in agony with my SI joint, after walking over some uneven ground.  Looking at me with twinkling eyes, my physio said “it pains me to say this Jak, but you need 3 weeks of bed rest to get this joint to settle down” and what’s more, she was dead right.  Rest, regular icing and heat did wonders, then I started using an SI belt to stop my joint wobbling around so much whenever I walked anywhere outdoors and my SI joint is the best it’s been in years.

When I was diagnosed with both HIT and MCAD in 2013 I had to go on H2 anti-histamines, as my stomach was over-producing acid which was giving me horrendous GERD and causing ulcers in my oesophagus.  I read all sorts of warnings online about the use of stomach acid reducing medication but guess what?  I just ignored it 😉  My stomach over produces acid.  Taking Cimetidine reduces my stomach acid to more normal levels.  I still have plenty of acid with which to digest my food but I’m no longer in purgatory with burned skin and a chronic cough from inhaling excess acid into my lungs.  Another no brainer.

Medical professionals don’t always know best, particularly about diseases like M.E. and EDS which don’t fit the ‘normal’ patterns of what we know about disease and disability.  Just about every other disease responds well to exercise…….apart from M.E., where exercise is the very root of the problem.  In every other disease being flexible and not stiff is considered a good thing, but in EDS the more flexible you are the more problems you’re likely to encounter.  You know your own body.  You know what works and doesn’t work for you.  And you are the one who has to live your life, not the physio or your GP.  Follow your instincts.

On a different topic, a link to a post I wrote about my hands has obviously been shared on social media somewhere and I’ve had a huge influx of visitors to my blog as a result.  So I just wanted to say a big “helloooo” to my hand visitors – I hope you’re finding the blog helpful 🙂

Weekly roundup

I’m doing my weekly roundup a few days early, as I’m not feeling great and have decided to take the weekend off from the computer and have a proper rest.

I saw the Dentist on Wednesday re my root canal, which despite a week’s worth of broad spectrum antibiotics is no better.  He asked me if I wanted to try another type of antibiotic but to be honest after 2 months of treatment I’ve had enough and just want the bloody thing out.  The Dentist says in his whole career he’s never had this happen before: the x-ray looks fine, the tooth looks viable, there’s no sign of infection, yet it’s still giving me toothache and is sore to pressure :-/  If I had a tenner for every time a doctor has said to me “I’ve never had a patient with this before!” I’d be rich.  I already have a hospital appointment at the end of August to see the Maxo-facial consultant re my sub-luxing jaw joint, so the Dentist has asked that I have my extraction appointment at the same time – I won’t actually have the extraction that day you understand, just the consultation.  So it looks like I’m facing another 2 months with tooth ache.  Super.

I was feeling very sorry for myself regarding the tooth situation until my Mum told me that my Nanna had all her teeth pulled at the age of 15.  The dentist came to the house, gave her a whiff of Chloroform and pulled every single tooth from her head.  She apparently came too with blood and teeth all over the kitchen floor and was told she wouldn’t be given any dentures for months until the gums had healed.  What and how she ate in the meantime is beyond me and I can’t imagine the pain (no painkillers then folks!).  My step-dad was only 20 when he had all his teeth removed, and his sisters were 17 and 18 respectively.  We don’t know how lucky we are these days.

I think there must be some kind of lingering bone infection or abscess at my tooth’s root because I’ve not felt well for weeks.  I feel MEish and very mast cell-y and am reacting to all sorts of things which don’t usually bother me – mast cells can play up when there is any kind of infection in the body.  The very worst thing is I’ve started having a mild anaphylactic reaction to the H2 antihistamines I take for my rampant reflux, so I’m having a break from those for a few days to see if it will calm down.  Of course, my reflux was barely in control on the tablets, so off the tablets it’s bloody killing me.  I’ve never known pain like that of stomach acid as it literally burns the oesophageal lining causing ulcers which food and drink have to pass on their way down.  The pain radiates through to my back, right up my spine to the base of my neck, and outwards to underneath both armpits.   I also inhale acid into my lungs which gives me a horrible cough and makes me feel frighteningly tight-chested and breathless.  I’m swigging Gaviscon advance like it’s going out of fashion.  I do have a Proton Pump Inhibitor to try from the Doctor, so might give that a bash on Monday.  I’m gutted I’m reacting to the H2s after being OK on them all year *sigh*.

I saw my lovely O.T. on Tuesday re my sprained ring finger, and both my middle fingers which have become troublesome in the past few months.  I now have 2 more Oval-8 ring splints for the PIP joints (ie the knuckles) in my middle fingers (I already have them for the DIP joints, ie the joints nearest the nail), and a Murphy ring splint for the PIP joint of my sprained ring finger (the Murphy splints look lovely but give me welts due to my dermographism so I usually avoid them, but in this case the size 5 Oval-8 was too small and the size 6 Oval-8 was too big, whereas the size 6 Murphy fitted beautifully – I’m hoping that when the swelling settles down I can wear the size 5 Oval-8 instead).  In the past ring splints have worked well for me.  I’d had pain in my thumb for 3 years before getting a splint, but after wearing it for 7 months and giving the ligaments chance to heal I no longer need to wear it as the pain has totally gone 🙂  So if you have EDS and are given braces or splints don’t panic that you’re going to have to wear them forever – it might not necessarily be the case.

I’m feeling yuk and more than a bit down despite the glorious weather here in the north of England.  I also still don’t have my camera back from Olympus (it’s been over a month now) so thought “fuck it!” and bought a 3rd hand body off Gumtree to use as a spare despite the fact I genuinely can’t afford it.  Like, really.  I’ve never been so skint.  But I’m so down in the dumps I needed something to cheer me up and take my mind off how nauseous I feel and how much pain I’m in.  This afternoon my Mum is dog sitting and I’m off into the wide blue yonder to take some pictures while the sun shines 🙂

Poppies & hoverflies in a wheat field

Spiders web on Himalayan poppy seed heads in my garden

Oesophageal pain

As I’ve mentioned in several recent blog posts my reflux seems to’ve gotten out of hand lately for reasons I can’t put my finger on.  I have constant pain where my oesophagus meets my stomach, a bit like I have a sharp piece of toast stuck.  The pain radiates to my back and goes up either side of my spine from my lower shoulder blades right up to the base of my neck.  It’s a stinging pain which nothing seems to alleviate.  When it’s really bad I also get burning, stinging pain down the outside of both arms right down to the elbows.  Thankfully I don’t have any stomach pain, but eating is no fun.  Drinking or eating anything warm is acutely painful and I’m fairly sure my oesophagus is inflamed or ulcerated.

Unbeknown to me, I had silent reflux for several years which resulted in acid being inhaled into my lungs giving me a chronic cough which was mis-diagnosed as allergic asthma.  Then in April 2012 my stomach really started playing up.  I had an endoscopy that year which showed very little, other than a dozen benign stomach polyps and some inflammation.  It was decided I had GERD and I was placed on an H2 anti-histamine (originally Zantac which gave me awful nausea and brain fog, so I switched to Tagamet which I tolerate really well).  It reduced the heartburn and upper epi-gastric/back/arm pain but didn’t cure it.

I’ve now followed all the usual recommendations for GERD for nearly 2 years:

  • My bed head is raised on 4″ bricks.
  • I leave 3 hours after eating my dinner in an evening before lying down.
  • Most of the foods to avoid on an acid reducing diet are things I can’t eat on a low histamine diet in any event, eg. tomatoes, alcohol, most spices, citrus fruits, fizzy drinks.
  • I’ve never smoked.
  • I’m normal weight for my height and build at 8st 4lbs (117lbs/53kgs).
  • I eat 3 small meals a day, and 2 snacks inbetween.

In addition I’ve increased to the maximum dose of Tagamet (4 x tablets per day) and inbetween doses I take Gaviscon Advance which means I take acid suppressing drugs every 2 hours.  Yet the pain just gets worse and my chest tightness and chronic cough are back.

The next step would be to take a proton pump inhibitor (PPI) like Omeprazole, but I’m reluctant for 3 reasons:

  1. I probably won’t be able to tolerate it.
  2. The Tagamet I’m on currently is one of the drugs recommended for Mast Cell Disease being an anti-histamine, so is preferable to a PPI which has no action on stomach mast cells.
  3. I’m only 46 years old and PPIs are the last drug left for me to try.  If the pain gets worse in 10 years time I’ve no drug options left.

Nothing I eat makes it worse or better and the pain is so acute when I lie down (even sleeping on a slope!) that it’s kept me awake at night for weeks.  Consequently I’m getting more and more tired and miserable, leaving aside the fact that long-term reflux puts me at risk for Barrett’s Oesophagus and ultimately cancer.

I can’t get an appointment to see my GP until 14th May, when I’ll ask for a referral back to see the hospital Gastroenterologist.  I will then have to wait about 4 months just for an appointment.  I’m dreading having to have another endoscopy if I’m honest, as my last one had to be done without sedation (I’m allergic) and the force used to get the camera down set off my dermographism and later that night my throat was so swollen I had to ring the out of hours doctor.  However, if I do end up having another scope at least I now know about my mast cell issues and can ask for some samples to be taken for staining.  In the meantime I guess I’ll have to at least try a PPI because at times I don’t feel like I can live with the pain for another second.  I wish sometimes The Powers That Be, and my body, would just cut me some slack and give me a break and some time off.