How Did I Get Sick?
Let’s flashback to January, 2012. I was in my second year of university. I was not only doing a Specialized Honors Bachelor of Arts in history, with a minor in geography, but a second degree as well, my Bachelor of Education. I worked, I volunteered, I drove, I had placements and I had a social life.I had a throat infection, the kind where your throat is not only sore, but completely swollen up. I was having fever after fever, so naturally I ended up on a round of antibiotics, Co-Amoxiclav to be specific. This was the biggest mistake of my life. This is when everything changed.
Within a mere TWO doses into my three pills/day, seven day round of antibiotics I began having diarrhea. If you have a weak stomach and can’t talk about poop, this tale may not be for you. I was having loose, watery diarrhea complete with blood and white mucus, to exact. Who knew that you could have mucus in your stools and not just in your nose? I sure didn’t at the time. I started a new antibiotic and started having these new symptoms, so I presumed that it was antibiotic related. I stopped the medication immediately… but the diarrhea did not stop.
What was happening to me, you ask? I had a C. Difficile infection, I just didn’t know it at the time. What is C. Difficile, you ask? Let me explain. Your colon, also known as your large intestine, houses billions of bacteria to help you digest your food. There are “good” bacteria, and “bad” bacteria, the former being the kind that aids in digestion. The good bacteria keeps the bad bacteria in check, there is a fine balance to keep the bad bacteria from colonizing and causing one to fall ill from infection. Now, let’s get back to the antibiotics that I was taking. Antibiotics destroy the bacteria in your body to help your body fight the bacterial infection. However, antibiotics typically cannot differentiate between the beneficial and dangerous bacteria – it tends to destroy it all. In my case, the antibiotic was strong enough to kill my good bacteria, but it was unfortunately too weak to kill a certain strain of the bad bacteria in me, C. Difficile. The C. Difficile began colonizing rapidly in my colon, as there was nothing there to keep it in check. This specific bacterial infection is highly infectious with a high death rate.
I kept going to the emergency department because of my blood loss and diarrhea. I was dehydrated, I was getting weaker and weaker. For the most part, I was simply just given IV saline fluids and sent home, no one tried to figure out what was actually wrong with me. You have to understand that I’m a 19 year old girl, I’m young and rather cheerful, so the doctors assumed that nothing serious could actually be wrong with me. I was isolated as if I had C. Difficile at times when I went for fluids, but no one actually checked for it. For the doctors, it didn’t make sense to have me take up a bed and waste time when they could be treating other patients. I’m young, they thought I’d be fine. I was given Percocet painkillers and sent home.
Mind you, at this point I was going to the bathroom 10+ times/day. I was in so much pain that I could not stand up without clutching my stomach in severe pain. I was in and out of the emergency department almost every other day. Things were getting worse, not better, and clearly no one was willing to help me. My parents decided that enough was enough, my mom took me to my family doctor and got me a referral to see a gastroenterologist. My mom is amazing, she was able to get me seen within days rather than the usual month long wait.
Fast forward to my appointment in early February, 2012. Upon hearing my symptoms, my GI diagnosed me with Ulcerative Colitis on the spot. This is a chronic autoimmune disease with no cure, one where my immune system attacks my colon, causing swelling and open ulcers on my colon walls. I began a non steroidal anti-inflammatory, Mesalamine immediately. I was scheduled for a colonoscopy to be done a few days later.
After my horrible colonoscopy prep during the 2012 Superbowl, I was all ready to get a camera stuck up my butt! Sounds wonderful, right? Right before I was about to be knocked out for the procedure, I asked if my GI could stick a camera into my stomach as I was having stomach pains and suspected an ulcer upon starting the Ulcerative Colitis medication. Being the remarkable doctor he is, he agreed to an Upper GI Endoscopy on the spot. Upon waking up, I had a confirmed diagnosis of Ulcerative Colitis.
A couple of days later, my body was just falling apart. My trips to the bathroom steadily increased, I was in more pain and facing severe dehydration. Again, I went to the emergency department, this time to the hospital were my GI worked. Upon triage, they found that some biopsy results from the colonoscopy had come back and that I had C. Difficile.
They gave me IV fluids as usual, and sent me home with painkillers and ironically, antibiotics to treat the infection. Unfortunately, this antibiotic, Flagyl was not strong enough to kill the strain of C. Difficile that I had, it was antibiotic resistant. Within a few hours of my first dose, I was shaking uncontrollably, running fevers and had gone to the bathroom 16 times over a couple of hours. I found myself in the emergency room again that night, and this time I was hospitalized.
By the next day, I was going to the bathroom 40+ times per day. It was hell. My body broke. I was in the hospital for days in isolation. They couldn’t even get me a bed in the ward… I lived in the acute section of the emergency department. No doors, no windows, no bathroom. They eventually switched me to even stronger antibiotics, Vancomycin. Although I slowly started to get better from the infection, my immune system seemed simply just broken.
On the day of release, my GI had a surprise for me. Remember the random upper GI endoscopy that I requested because I suspected an ulcer? He took biopsies of my stomach and small intestines. There was no ulcer. But I did test positive for something… it was Celiac Disease. There were no symptoms, we didn’t suspect it. We went looking for an ulcer and found Celiac Disease. How crazy is that?
The C. Difficile infection went away, but now I was two for two in terms of suddenly developing random autoimmune diseases. Things spiralled from there.
I went home and had to suddenly adjust my entire life. This began with my diet. Celiac Disease means that I can’t eat gluten, namely wheat, rye, barley and more. Wheat is in many foods, it’s a filler for most spices and sauces, as well as the main ingredients in pasta and baked goods, such as pastries and break. But that isn’t the problem, the problem is cross contamination. If my parents used a knife to butter bread, I cannot use the knife that touched the bread, nor the butter incase there were any crumbs. Even a speck of gluten can get me sick. Getting glutened can increase my chances of everything from cancer, infertility, diabetes to mental illnesses. Ulcerative Colitis means that I have to avoid spices, alcohol, caffiene, most fruits and vegetables.
Anyway, the infection went away and I managed to get my Ulcerative Colitis under control, but I was still having diarrhea. I became a regular in the emergency department for IV fluids. I got a camera stuck up my butt quite a few times – while I was awake – to see what was going on, but my colon was fine. It left me with an Irritable Bowel Syndrome diagnosis. It’s not a real diagnosis in my opinion, it just means something is wrong with my digestive system but we have no idea why.
Fast forward to September, 2012. My bowels kind of slowed down to my delight, except I now felt constipated. I began having unexplained abdominal pain and chronic nausea. By November I developed an Overactive Bladder and I always felt full and nauseated. In December, 2012, the vomiting began. I ended up doing an emergency upper GI endoscopy, which lead to my diagnoses of Gastroparesis and Gastritis. Gastroparesis means paralysis of the stomach, and Gastritis is the inflammation of my stomach. We had no idea why any of this was happening.
Hello Janauary, 2013. I switched to a soft food and liquid diet. My stomach would simply not empty. I ate and the food just sat in my stomach. There was no where to go but up, so I spent a lot of my time vomiting. February brought on severe severe pain. Joint pain, flu aches minus the flu and I always felt like I’d been hit by a car. By March, my blood pressure kept falling overtime I stood up. Walking, even standing became difficult. Things went beyond my digestive system, whatever was happening to me seemed neurological.
I saw many doctors, and they had zero answers. They told me it was all in my head. I knew it wasn’t in my head, but I did find myself questioning whether I was crazy or not occasionally. Thanks to my wonderful parents, we pushed and got appointments with doctor after doctor to figure out what was wrong with me. I stopped going to school. I couldn’t go out. I couldn’t work. This isn’t me, something was obviously wrong. I am not an idle person, but I became trapped by my body.
Summer 2013 arrived, with no answers. But, I scored an appointment that would finally give me answers. My cardiologist performed a tilt table test, where I am strapped to a table and flipped to a standing position with my blood pressure and pulse being continually monitored. I was diagnosed with Orthostatic Hypotension. When you stand up, your brain is supposed to tell the blood vessels in your legs to tighten up, to continue circulation despite the change in gravity. My brain did not do that. My doctor suggested that something is wrong with my Autonomic Nervous System. This part of your nervous system controls your unconscious processes, from breathing, to heart rate, to pulse, to digestion, to body temperature regulation to bladder voiding and more. Mine was clearly malfunctioning. This was definitely something neurological.
In October, 2012, I saw one of the best neurologists in Canada. Nerve damage was found. Even though my brain was sending out the right messages, my body wasn’t receiving them. This was a case of broken telephone. I was given a vague diagnosis of Autonomic and Peripheral Neuropathy. Small Fiber Neuropathy was suspected as well, but my doctor decided there’s no point of wasting time and resources to test for it. I also developed Postural Orthostatic Tachycardia Syndrome, also known as POTS, where my heart rate would sky rocket when I stood up in an attempt to raise my blood pressure to keep me from passing out.
Now that we had an idea of what was wrong, one would think I’d be treated, right? Nope. Nope, nope, nope. I was told that my prognosis would be me inevitably ending up in a wheelchair and there was nothing I could do about it.
My autonomic issue appeared to be autoimmune. It made sense. We tested to see if my immune system was producing antibodies that are blocking signals from my brain, this was testing for Autoimmune Autonomic Ganglionopathy. My antibody serum came back negative, but false negatives were common. We went ahead with autoimmune treatment based on the assumption that this was a false negative in December, 2013.
IVIg, where they take the antibodies from 3,000 – 10,000 people, and infuse it into my blood stream to calm down my crazy antibodies, was a disaster for me. Funny story… my immune system is so aggressive that it destroyed HALF of my blood in response, rather than the treatment calming my immune system down. I ended up back in the hospital a few days later for a blood transfusion. I had never been in that much pain in my entire life. My hemoglobin dropped by half – I lost as much blood as if, and I quote, “[My] arm had been cut off and blood was pouring out everywhere.” That was not fun, to say the least. We obviously decided that that route of treatment was not something I would ever try again. My neurologist and I decided that immunosuppression treatment was not the way to go. If I couldn’t withstand the IVIg or steroids, there’s no way my body could handle more aggressive treatments, that can range up to chemotherapy.
2014 chaotically arrived. No more treatment. I was worsening. Numbness, tremors, migraines, dizziness, pain, light sensitivity, dry mouth, dry eyes, constipation to diarrhea – my body was just a mess. I found myself in a wheelchair by summer. I, in fact own my own wheelchair. My original prognosis was right – for a while.
I tried Traditional Chinese Medicine with short term success. I sought out second opinions. and found myself trying IVIg again under the supervision of a new doctor. I was told that there was a higher chance of me winning the lottery than having the same reaction that I did before. It seemed like a good gamble, especially in comparison to the my alternate option, chemotherapy. I rolled the dice… and lost terribly. Sort of.
September, 2014 brought another round of IVIg for me. It went horribly wrong. Terribly wrong. Wrong, wrong, wrong. I was hospitalized with an even worse reaction that the first time. I didn’t win the lottery. The thing is though… once my side effects were dealt with, I WAS FEELING BETTER. Of course, I could never try this treatment again, but I was out of my wheelchair and armed with the knowledge that I could get better.
I read about Plasma Exchange, where the evil antibodies are simply taken out of my blood, and figured that it might just work for me. I told my doctors that my other doctors recommended Plasma Exchange for me. I knew no one would take me seriously if I said “I want to try this treatment that I read about online…” My scheming worked and I was granted a requisition to try Plasma Exchange.
Plasma Exchange requires giant needles and I have small veins… so I ended up doing surgery awake to get a titanium port with a line to my heart placed in my chest. I have another funny story for you… the tubing went far too deep into my heart and I had to do an immediate surgery days later to shorten the line. Luckily, it didn’t cause any structural heart damage and it didn’t outright kill me.
Plasma Exchange is changing my life. It’s no cure, and it will be done indefinitely. I still have symptoms and things are still difficult, but I am getting my life back. I have said goodbye to my wheelchair. From here, my journey shall continue.