This body is 62. I am fit, slim and active. In the past I was much the same. My mum tells me I almost died within weeks of my birth in Bristol UK. I was throwing up all the time; every feed was emptied efficiently, as a result I was starving to death. I had been read last rites in the hospital (not that I understood!). My mum was paying what she thought might be her last visit to the family doctor and on his desk was a ‘glue-like’ food sample, a tester that arrived in the mail for no particular reason. Perhaps an oats mix? It was ‘luck’. Within days of taking this my body started to keep food down, as it had no choice, and I grew and thrived. It seemed the crisis was over, and the cause was never explored any further. Maybe I had just developed a poor gastric reflex at this impressionable age and the glue-food broke that reflex? Maybe I was initially reactive (sensitive) to the manufactured milk feed given to me and this new food just had different ingredients? My mum was never sure and I think she was just so relieved that I survived. I do not have more detail than that, but always wondered light heartedly if I should sue a rather large ‘x’ baby food company!
Moving on. When excited or nervous I often noticed my stomach was painful or felt very tight. I also often sweated a little more than other kids, but never explored this issue. As a child I was slim, fit and active. However, if I tried to run any long distance I quickly developed a ‘stitch’ that stopped me, as I couldn’t breathe properly and I gasped away, stumbling about on the running field. I always presumed it was my diaphragm going into spasm, because that was what I was told as a child.
As a young adult I occasionally got that same pain or discomfort and tightness when driving or nervous. I brushed it off and thankfully did not require medications or special foods. It seemed to be helped by the simple act of placing pressure over my lower sternum with one hand as I drove with the other. I could eat and drink anything, and I did!
In my forties I became a very fit, slim and active therapist, my kids were growing fast and we had a set of exercise rings with blue plastic handles set up on our deck outside just for fun. We live in the countryside, built our home in wood and enjoyed every out door activity there was. We all loved cycling, canoeing, long distance wilderness walks, camping and swimming. Life was good to us and we spent very little time watching the boring TV. One day I was just fooling about, having fun with the kids as usual, upside down on those rings and I felt something ‘give’ I felt a mild ‘teasing apart’ sensation at my diaphragm level. I immediately stopped and rested. “That was dumb, no more rings for a few days,” I thought.
It took me a few years to completely realise that my growing discomfort and poor sleep was something I needed help for. I do not like asking for help, and it took me even longer before I went to my doctor. My doctor, a kind and intelligent person, was not all that understanding. This injury was something he didn’t give much credence. He believed in a different story. A story from his own medical texts. Certainly he was very brisk about examination and arriving at a diagnosis. He was sure I just had what everyone else has –reflux. No real examination of my diaphragm has ever been made. His cure was a sale, a simple pill for a physical injury. As you can tell I am not all that enamored with this approach.
The years have passed, and I have been on and off these darn pills for years. They certainly help with the acid reflux. My injury has matured; I feel the cause has not ever been examined fully. The persistent mild reflux has grown worse on occasions and devastating on other occasions. At its worst my sleep is destroyed for days, weeks, and I feel as if I will collapse. My legs feel as if they will just fail to support me. I had to give up my job as it became difficult to physically continue, I was exhausted from poor sleep and constant discomfort and pain. A lot of the job entails repetitive bending which just made my reflux worse. I am given proton pump inhibitors and offered nothing else. Once the sale has been made to me, I am considered ‘cured’ by my doctor. No further attempts at a deeper understanding are ever made by him. It is not that he doesn’t care, it is just that he is being honest, he knows of nothing else that could help.
I have seen two specialists. One was clearly near retirement and, after a barium drink and x-ray, I was offered a stomach operation that seemed a little brutal. His replies to my questions were never answered directly and he treated me as an uneducated client that needed to behave. The next specialist was a kind younger man who listened. He arranged for me to spend one day walking about with an acid monitor inserted into my lower esophagus. It was a surprisingly comfortable and interesting experience. Unfortunately is has been difficult to tease any further information from this examination and I walked away from it with the same label, no detailed additional anatomical understanding of my particular situation. It has been frustrating.
As the acids take their toll the local autonomic nerves get more dysfunctional, more reactive. My LES becomes more dysfunctional and irritated. My reflux becomes more awkward to manage. My voice has changed. I have found in the past that if I build up my strength in my diaphragm my symptoms are often nearly gone. However life is not a straight line, maintaining perfect extra exercises or eating those perfectly sized and timed meals, charting my sleep patterns. This all helps, but it does not cure because we still do not know the root cause(s).
Today I was woken at 4am despite sleeping upright in my firm and comfortable sofa for the last four nights. I have taken the PPI’s and an anti acid drink. It still aches and keeps me up.
I wish I had more say in the direction the medical testing procedures went, and I would love to help develop a few of my own.
Labeling this as ‘a condition’ with an expected natural life cycle that cannot be altered is not anything more than observing our inability to cure. Present pills for reflux do not resolve the deeper issues. Pills are therefore a sale that represents a superficial relationship between the patient and the doctor.
There is a clear lack of scale and relevance in the present examinations used both in general medical practice and in the hospitals. Acid reflux and GERD are terms used, but no one knows why it occurs because there are no instruments that have ever been developed that fully and accurately sample what is going on inside our bodies. The diagnosis of GERD is a dysfunctional one. The pills trap both patients and doctors into a prolonged slow decline that involves them in yet another doctor-patient relationship that is superficial at best. We need to follow a new path. I would like to solve this hidden dysfunction and stop future generations from having to experience the same prolonged illness and injury. I would love to give my doctor the tools to enable her to develop a real understanding of cause, to empower him or her and make their hearts sing too.