I saw my GP a couple of days ago to discuss my continuing reflux, breathing issues and cough. When I described my symptoms, in particular the feeling that I have a piece of sharp toast constantly lodged at the bottom of my oesophagus, she said I’ve almost certainly developed a hiatal hernia due to my faulty collagen making the sphincter to my stomach weak, which is what I’d already concluded myself (hernias of all descriptions are very common in EDS). Part of my stomach is pushing up through my diaphragm and into my gullet allowing my stomach contents, including acid, to reach places it wasn’t intended to.
She said I could go for an endoscopy to confirm, but the thought of having another tube down to my stomach without any kind of sedation, as the drugs set off my mast cells, isn’t appealing. There’s also the fact that, due to my pressure dermographism and the force used to get the scope down, the last one caused my throat to swell to scary levels. I asked her if the treatment would be any different if I had a confirmed hernia diagnosis and she said no. Suffice to say I declined the scope.
She wants to switch me from my current H2 blocker to a PPI (proton-pump inhibitor). I resisted for several reasons:
- Due to my horrendous drug reactions it’s nothing short of a miracle I’m tolerating the H2 anti-histamine. I really feel I’d be pushing my luck trying a PPI.
- PPIs cut stomach acid by 80%. There is, therefore, hardly any acid with which to digest food. This can lead to nutrient deficiencies, and in extreme cases malnutrition. Due to my EDS I already have slow GI transit – taking something which would probably make that worse doesn’t seem wise.
- Even if tolerated, PPIs can have some wicked side effects. I should know, as both my parents are on them (my Mum having had GI issues for years probably due to undiagnosed EDS).
- I’m only 46 years old. The thought of living on PPIs for the next 40 years isn’t appealing.
However, we both agreed that having stomach acid leaking into my lungs can’t be doing a whole lot of good. I’m already on 4 Tagamet tablets a day, so can’t really increase those. I also take Gavison before bed, and have my bed-head raised 6″ off the floor. The only thing she could suggest is giving me co-magaldrox which coats the stomach and gullet to stop acid from burning so much. It’s a bit of a sticking plaster over a gaping wound but I’m not sure what my other options are.
You can have surgery to correct a hernia, but it’s not always successful. It’s also a big operation and considering I react very badly to anaesthetic, and can’t tolerate any kind of pain-killers, isn’t something I’m desperate enough to consider just yet. I may, however, end up on the PPIs as living with this kind of constant pain, cough and the feeling that Nelly the Elephant has taken up permanent residence on my chest is very wearing, not only physically but emotionally.
I’m not well enough to work, but volunteer from my bed when I can (which I treasure as it’s not something I’ve always been well enough to do). I produce my Church newsletter each month (which goes out to 7 parishes) despite not being religious myself; am a volunteer board member of the 25% ME Group, a UK charity which solely supports people with severe M.E. (as against the wider disease Chronic Fatigue Syndrome); and crochet blanket squares and garments for AIDS orphans in Africa through Knit-a-square when my hands will let me. Having not had much help and support throughout my own life, and particularly while I’ve been ill, it’s doubly important to me that other people not feel abandoned, alone or isolated and this is my chance to help in a teensy tiny way. As Oprah would say: pass it on x