How Did I Get Sick?
Within two days of antibiotic use, I started passing white mucus and blood in my watery stool. I stopped the antibiotics because I knew something was clearly wrong. What I didn’t know at the time was that C. Difficile, a form of ‘bad’ bacteria, was colonizing and taking over my intestines. C. Difficile is a highly infectious bacteria, with a high death rate. I kept going to the emergency room, and they sometimes even isolated me as if I had C. Difficile, but no one actually checked for it. Doctors assumed that because I am very young, I probably did not have this infection. After continually going the the Emergency Room for saline IV, to rehydrate me as I was going to the bathroom up to 10 times a day, they kept sending me home with narcotic painkillers. It was assumed that I simply had a viral infection, that would pass on its own. That was a big mistake, Percocet constipates you, and if you’re constipated, the bacteria has even more of an advantage of multiplying since you do not pass any out with your stool.
Something was clearly wrong with me. I was going to the bathroom far too much, and had abdominal pain so bad that I could not even stand up straight. The hospitals kept sending me home, so my mom decided that it was time to take matters into our own hands. We went to my family doctor and got a referral to a Gastroenterologist (GI), a doctor who specializes in the digestive system. My appointment was months away, but my mom convinced the secretary to have me seen within a matter of days.
We fast forward to February 2, 2012. Upon hearing my symptoms, my GI diagnosed me with Ulcerative Colitis on the spot, an autoimmune inflammation of the colon. He started me on Mesalamine, a non steroidal anti-inflammatory immediately, which is the first line of treatment, and decided that we would do a colonoscopy on February 6, 2012 to confirm the diagnosis.
By the time we reached the colonoscopy date, the Mesalamine was hurting my stomach. I had an ulcer in the past, so I asked my GI if we could do an upper endoscopy to check on my stomach, since I was going to be put to sleep for the colonoscopy anyway. This doctor is incredible, he agreed on the spot.Cameras were to be pushed inside of me, from both ends. As soon as I woke up, my Ulcerative Colitis diagnosis was confirmed. He had taken biopsies of my digestive tract during the test, but it would take time to get the results of the biopsy.
Within a few days, on February 10, 2012, I was back in the hospital needing saline IV due to continual bloody diarrhea. Upon triage, I was immediately told that my results were in and that I had C. Difficile. They immediately isolated me, gave me Flagylantibiotics, saline and sent me home. Within hours, I was going to the bathroom 16 times that day, and developed a severe fever. I was shaking and vomiting non stop. I went back to the hospital that night, and was hospitalized in the acute section of the emergency room, in isolation.
The next day, I was going to the bathroom more than 40 times a day. Yes, I really mean that I was pooping 40 times a day. It turned out that the antibiotic they gave me, Flagyl, had killed the remaining ‘good’ bacteria in my stomach but did not destroy the C. Difficile bacteria. C. Difficile is highly antibiotic resistant. The infection had severely worsened. They switched me to an even stronger antibiotic, Vancomycin, which seemed to calm things down. I was in the hospital for about a week.
I begged to leave the hospital even though I wasn’t quite better yet, because being isolated in a room with no windows can make you go absolutely crazy. Upon my discharge, I had yet another diagnosis – Celiac Disease, confirmed from the biopsy results. While checking for my ulcer, damage was found in my small intestines – my doctor had accidentally found that I had this disease. Crazy, right?! I had absolutely no symptoms, nor did I know what the disease even was, so this was a little overwhelming. I would have to adhere to a gluten free diet for the rest of my life, or until a cure is found.
I went home, finished my round of antibiotics, and the C. Difficile infection was gone – but I was still having diarrhea. I had to still visit the Emergency Room for saline, as it was severely dehydrating me. My GI thought that perhaps my Ulcerative Colitis was flaring even worse, so he wanted to do a sigmoidoscopy, a partial colonoscopy, to make sure that things were really worsening, before he steps up my treatment to dangerous steroids. When he did the test, again and again over the next three months, NOTHING was found. He had no idea what was causing my diarrhea, so he diagnosed me with Irritable Bowel Syndrome. It’s not a real diagnosis, in my opinion, it just means that something is wrong with my intestines but doctors have no idea what it was. I was given various drugs to calm down my colon, they didn’t work well.
We fast forward to September, 2012. I began having unexplained abdominal pain and continual nausea. My diarrhea slowed down, but now I was feeling constipated. By November, I developed an Overactive Bladder and I always felt full and nauseated. By December, 2012, I was constantly vomiting. My GI decided to do an emergency upper GI endoscopy in early December. I was found to have mild Gastroparesis, paralysis of the stomach, and Gastritis, inflammation of the stomach. I decided to stop my Ulcerative Colitis medication as it was behind the Gastritis, and was given new medication to make my digestive tract move. We had no idea why any of this was happening.
In January, 2013, I had to switch to a soft food and liquid diet. My stomach would simply not empty, so I would vomit everything up because the food was sitting in my stomach. Liquids could be digested, because they could be passed on through my digestive system via gravity. In February, 2012 I started having severe pain – joint pain, flu aches without the flu and it always felt like I had been hit by a car. By March 2012, my blood pressure kept falling every time I stood up. I saw so many doctors and none of them had answers. I began to think I was crazy, and that this was all in my head. It was a tough time, but none of this was in my head at all.
In June, 2013, I finally saw the right cardiologist. He performed a Tilt Table Test, where I am strapped to a table laying down, and am flipped to a standing position while continually recording my pulse and blood pressure. I was then diagnosed withOrthostatic 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. This suggested that I had Autonomic Neuropathy, which explained why my stomach, intestines, blood pressure, bladder and more were malfunctioning.
I saw a neurologist by October, 2013, who found nerve damage in my legs. This means that even though my brain is sending out the right signals, they don’t always get through to the appropriate organs, vessels and tissue. This confirmed the Autonomic Neuropathy diagnosis. This was a vague diagnosis, because they don’t know why it was happening, which nerves it affected and couldn’t do anything about it. At this time, I started to develop POTS, Postural Orthostatic Tachycardia Syndrome. My heart would speed up in an attempt to bring my blood pressure up to safe levels. It was exhausting, as it was like I was running a marathon from merely standing. She told me my prognosis is a wheelchair.
With all of my autoimmune conditions, this neurologist suggested that my immune system is destroying my nerves. She was hopeful that new treatment, IVIg, could help me. IVIg is where they take the antibodies from 3,000 – 10,000 people, and infuse it into my blood stream to calm down my crazy antibodies that are attacking 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, “your 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. This is how I spent Christmas, 2013.
In February, 2014, we decided to try steroids, Prednisone, as I clearly do have an aggressive immune system and this could calm it down. It helped, for a few days… and then it seemed like my immune system had somehow overridden the steroids. All of my conditions got worse. It triggered an Ulcerative Colitis flare too, which is the complete opposite of what steroids are supposed to do. I was also losing weight and unable to eat, the opposite of the effects of steroids. I stopped it quickly.
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.
Where does that leave me? I’m simply trying symptom management now, which is going poorly. I get all the side effects from every medication. I stopped most of my medications and am trying Traditional Chinese Medicine now, in May, 2014. I am having some relief, but we’ll see where this form of treatment goes. I do need a wheelchair, not all of the time, but there are times where I cannot walk. Her prognosis was right.