I’ve had significant GERD (gastroesophageal reflux disorder) for about 10 years, although the first few years were ‘silent’ GERD with no wind or belching and back pain rather than breastbone pain , so it wasn’t picked up on. The biggest problem I had was a dry, unproductive cough which at the time was put down to all sorts of things (asthma, infection, allergy) before we realised it was acid reflux being inhaled into my lungs. I’ve had all the usual tests, including an endoscopy, and nothing much was found other than several benign stomach polyps and a shed load of inflammation, so I was diagnosed with Gastritis. Gastritis and GERD are common in Ehlers-Danlos as the sphincter which holds food in our stomachs becomes lax causing stomach acid to flow back up the oesophagus, and our bowels tend to be sluggish which causes our food to sit in our stomachs longer than it should causing inflammation. The drug Domperidome is commonly used to speed up stomach emptying in EDS, but of course I’m allergic to it (it’s one of the drugs which give me Oculogyric Crisis).
To compound the problem, MCAD causes excess acid to be produced from the mast cells in our stomachs, so I’m in the middle of a perfect storm. One of the first drugs to be given to MCAD patients are H2 antagonists (eg. Zantac, Pepcid), which target the mast cells in the stomach and stops them from producing so much acid. I was told about 2 years ago I should be on Zantac but have just been too petrified to try it due to the way I react to medication. Instead I’ve been sleeping with my bedhead raised off the ground to stop acid leaking back into my gullet at night, and taking Gaviscon Advance, which neutralizes the acid and creates a foam barrier across the top of the stomach to stop the contents leaking back into the oesophagus. It helps a bit, though I do still have heartburn and the pain really gets me down.
It became so bad recently that in desperation I asked my GP for a Zantac prescription (though I always use liquids rather than tablets, as I can then take a teensy tiny dose and work my way up to a full one) and have been trialling it for the past 3 weeks. The miraculous news is that I can tolerate the Zantac and have had no reactions to it. The bad news is it’s made my heartburn much, much worse, so much so that I had to stop taking it 3 days ago and revert back to Gaviscon, and thankfully the heartburn is now settling back down again.
This is why I’m in no way religious. I’m a good person. Never done a thing wrong my whole life (oh, except to be caught going 7mph over the speed limit downhill on the motorway, and putting the wrong time on the disc on my car and incurring a parking ticket). I’m a loyal friend. An extremely good daughter. I’ve taken in rescue animals my entire life. And, despite being too ill to do full-time paid work for some time, have always done volunteer work from my bed. Yet I get not one, not two, but three little known, under-researched and disbelieved diseases where I’m ignored by the medical profession and basically left to rot. To add insult to injury I’m allergic to any drug which might help, and am too sick to do physical therapy. And every time I’m given a glimmer of hope that something might help my symptoms (ie being able to tolerate the Zantac) it’s taken away again (ie the Zantac not only doesn’t help, it actually makes the situation worse). There is no ‘higher power’ folks – we’re on our own. p.s. please, please don’t leave me comments about God or about being positive or I might have to kick you!!!
I’m going to ask my GP for a prescription for Pepcid, another H2 antagonist which works in a slightly different way to Zantac. Then of course I have to start the whole trial again, petrified every day I’m going to go into shock or have an awful reaction which puts me in bed for months. There are times I seriously hate my shitty life and wished they sold new ones at Tesco (let’s face it, they sell everything else!).
Before I sign off, I’ve added yet another new recipe to the site. We’re heading into Autumn here in the UK so I thought I do a recipe for stodgy but warming Quorn Cobbler & Dumplings. See the Main Course section of the Recipe page and scroll down for details.