At the start of 2018 I was diagnosed with C. diff. I never really heard much about C. diff outside of people acquiring it in a hospital setting or people of advanced age contracting it. Oh, was I wrong.
After being sick for about 8 weeks with worsening symptoms, I finally made an appointment with my doctor. I was prescribed antibiotics and didn’t have any issues. A few weeks after that, my symptoms worsened again. I was hesitantly prescribed a second round of antibiotics. I say hesitantly because at the time I understood some of the risks of taking antibiotics, but I was also really struggling with how long I had been sick. I am a complex medical patient so when I am sick, I get really ill and it worsens all of my conditions. I just wanted to go back to my baseline so I agreed to take that second round of antibiotics.
In the middle of my second round of antibiotics I felt very off. The scary thing is I dismissed my symptoms as an IBS flare at first. I figured that my symptoms were probably caused by the antibiotics, a common occurrence for many people. But after no sleep, intense full-body muscle spasms, hot sweats, cold sweats, a worse than normal migraine attack, worse than normal stabbing pains in my stomach and bladder, and frequent diarrhea, it was clear this was pretty intense.
The next day after these symptoms escalated even more, I knew I should go to the ER but I didn’t want to. I didn’t want to feel like I had to defend myself at the ER and explain how I’m not a “frequent flyer pain patient” and I’m not here just for pain meds (I wasn’t even on pain medication anymore due to it not helping!). I also figured the ER would dismiss my symptoms and say I just have a chronic sinus and/or bacterial infection with an IBS flare. After all, that is what I was thinking. So why go to an overstimulating ER just to be told this and risk experiencing medical gaslighting? I figured they would just tell me to stop the antibiotics, get some rest at home, and take off work. I can do that on my own, or so I thought.
At that point my family became very concerned with my symptoms. With my body feeling broken, no sleep, and teary eyed, they said I needed to go to the ER as my symptoms sounded serious and not typical even for someone with such complex conditions like myself. So it was decided.
We arrived at the ER and there were well over 30 people in the waiting room. It was flu season. There was a 4-5 hour wait. At this point I knew I needed to be seen promptly. I explained my symptoms, but was dismissed as to them I probably seemed like just another person using the ER for the stomach flu. Plus, with having chronic pain for 17+ years already at that time, I have the uncanny ability to coherently speak and not necessarily look like I’m in extreme pain. From all appearances it certainly looked like I was over-exaggerating my symptoms, really when I was not. So we ditched the ER and drove across town to an urgent care clinic. I was seen within 20 minutes.
The healthcare professionals at urgent care were great. They didn’t assume that my symptoms were all just due to a flare in my normal conditions. They took vitals, blood, and a stool sample. I was given a pain injection, told to stop my antibiotics, take probiotics, stay hydrated, and go on the BRAT diet. It was made clear that if any symptoms worsen I should go to the ER.
The next morning after the stool sample was fully processed, they called with the C. diff diagnosis and I was promptly given medication. Oddly enough, C. diff is treated with antibiotics. These antibiotics come with an extensive list of side effects and serious warning labels such as “may cause brain disease” and “has been shown to cause cancer in mice and rats with long-term use.” Not very comforting. Unfortunately, likely due to the complexity of my medical conditions, I ended up getting micro-tears in my legs from this medication.
At that time I looked at multiple online forums and medical websites and learned a lot about C. diff. I remember feeling scared about not knowing what my future was going to be like. I thought about how many people have reoccurrences of C. diff and how some people die. I thought about how for others it takes years for their GI tracts to heal. Despite all of the unknowns at that time, I was thankful the infection was caught early and that I was able to recover at home.
My hope in writing this is twofold. 1.) I hope my story can help others learn more about the risks of antibiotics and the seriousness of C. diff. 2.) Most importantly, do not dismiss any new symptoms as just one of your pre-existing conditions flaring up. As always, everyone is different, so discuss your concerns with a trusted medical doctor.
Above all, take one day at a time, my fellow C. diff survivors.