So for about 18 months, I have been suffering from a few different conditions. The ongoing treatment and diagnosis has been unsatisfactory at best. The decline in my quality of life has been heart breaking and it’s safe to say I am willing to try anything to try and fix my malfunctioning body.
I was only 25 when this first hit me; I was also the healthiest I had been in the five years prior. At the time I was enjoying life, going out with friends most weekends and working out during the week. I was overweight but losing weight healthily. I thought nothing of racing up and down 21 flights of steep fire stairs in the office building I worked as part of my daily exercise regime. I was eating healthy and feeling fantastic. I lost 20kgs. To top it all off I found my soul mate during this time. Life was sweet.
A minor disaster occurred in November of that year, I had what I thought was a bout of serious acid reflux and acid stomach, but when the pain reduced me to tears and near delirium my partner rushed me to the hospital. The deduced I probably had a bad case of appendicitis and decided to remove my appendix via emergency laparoscopic appendectomy.
Upon entering my abdominal cavity with the camera it was discovered there was a quantity of free flowing fluid around my organs and more importantly, a positively huge amount of scar tissue (adhesions) sticking my organs and abdominal wall together. The appendix was removed without incident and I was placed in recovery.
When I came to, the registrar visited and quizzed me about my health. Have you ever had any abdominal surgery before? Have you been suffering from any long term illness? No, of course not, my health has been fantastic so far. He mentioned that it was extremely strange that I had such extensive scar tissue within my abdomen, given my answers to his questions.
The results from the blood tests and testing of my appendix following the surgery deduced that the appendix was not necessarily infected or inflamed but that my CRP count (infection markers in the blood) were unusually high, and indicating long term infection. How is that possible considering I felt like superwoman up until my hospital admission? Puzzled but otherwise not worried, I went home for what I expected to be a short recovery then return to work.
What followed was anything but typical.
Immediately I was aware of excessive pain, I also had a huge amount of nausea and vomiting. Endless vomiting in fact. My bowels ceased moving completely and I was reduced to using enema’s and strong oral laxatives which further exacerbated my pain. Food was like a punishment to me. No sooner did I eat, that I found myself crippled with abdominal pain rendering my completely unable to concentrate or sit upright, lying down offered some small relief from the pressure I felt inside. I hated eating food knowing what would happen within hours following eating. So I stopped eating properly, and my weight plummeted further. This lasted for months. My doctors were unable to offer any explanation for this despite numerous tests. My blood tests continue to show an unusually elevated CRP level. Due to my poor nutrition, I became extremely fatigued and weak.
During this time I had numerous blood tests, CT scan, MRI, colonoscopy and gastroscopy. I have also been through a pharmacy’s worth of medications in a quest to find just the right combination and dosage of medications to keep me sane and at least semi functional. This has had varying levels of success.
In recent times my gastroenterologist has diagnosed me with post infectious irritable bowel syndrome, motility disorder and chronic fatigue syndrome. My current symptoms on any given day are nausea, vomiting, acid reflux, acid stomach, dizziness, abdominal pain, irregular bowel movement and extreme fatigue.
The current explanation is that I possibly had a long standing case of gastroenteritis at the time of my hospital admission which went untreated then caused these other conditions. The opinion is that there are some people who become chronic sufferers of this condition and that I am one of them, I have also been told it is not uncommon to be suffering for 3-5 years or longer. Recently I met someone who had it for 8 years.
Someone my age should not be suffering from this sort of thing, and certainly not to such an incapacitating degree. Every day I face judgement from my peers about this invisible condition. I can go from a smiling happy person to tired, and crippled with pain, within minutes. I was meant to start a family sometime soon, this is not going to happen for as long as I have this condition, it would not be fair on any child I bring into this world, being a sub-standard mother is not an option to me. My relationship with my partner whilst still going strong, could be better, we are restricted in what we can do together and how often, this can even mean simple things like going out for ice cream, or a seaside walk. I have now been sick longer than healthy whilst in my relationship with him. He recently said to me that he can’t remember what it was like being with me whilst not being ill. He certainly didn’t say that in any malicious way, more sadly than anything. And this is the last straw. I have to do something, anything. This cocktail of medication is merely a road to a tenuous existence, not a life. But what to do?
Whilst ruminating over my predicament and trying to find a way to fix myself, to deal with it, my friend posted a link to someone’s blog on her Facebook. His name is Rob Rinehart and he talked about how he stopped eating food. His blog is here http://robrhinehart.com/?p=298
