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:
I probably won’t be able to tolerate it.
- 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.
- 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.