C-Diff - The Gift that Keeps on Giving

As a patient who has lived with GI symptoms and complications for the last 9 years, I have always been aware of, and afraid of, the infection clostridium difficile - also known as c.diff.

Severe symptoms

Everything I had ever heard indicated that I would KNOW if/when I got the infection. It came with severe symptoms. The symptoms were worse than those I had grown to know and understand with Crohn’s disease. From my knowledge, the output looked and smelled much different than one’s baseline.

In the fall of 2015, I was on day 3 of a high fever, sore throat, tight chest, and frequent urination. I called my physician, who recommended I stop by an urgent care for some labs. Well, urgent care sent me directly to the ER, where I was diagnosed with a kidney infection, and given a high dose of antibiotics. On day 6, my symptoms had not improved, and along with diarrhea and dehydration, I felt like I needed to be re-examined. I drove to a small ER near my house, where I was told that my liver levels were high and I was being admitted for further testing. When asked about my GI symptoms, I indicated that they were present, but not much different or more noticeable than usual, but the hospital felt that a stool sample was necessary.

I was diagnosed that night with mononucleosis, and the following morning I was told that I also had c.diff.

I thought I would've known if this was happening

Honestly, I was shocked. I was so sure I’d be able to identify if/when this happened to me.

I started the antibiotic Flagyl, which I quickly had a reaction to. This included nausea, vomiting, itching and a pretty fast spreading rash. The hospital switched me to Vancomycin, which worked much better and without any awful side effects. The only downside was the medication had to be stored in the refrigerator and had to be taken every 6 hours on the spot. With mono, this meant setting alarms four times a day, for fourteen days, to drag my behind out of bed, down the stairs, to the fridge, to dose with medication.

I was quite pleased when I finished the course of meds until I did the follow-up stool test. This clearly indicated that c. diff had not been kicked out of my body.

A more aggressive treatment

My GI doctor decided we needed to get more aggressive, which is when I was prescribed Dificid. Although a more expensive prescription, Dificid did the job and I was so grateful.

Fast forward to April 2017, when I had to visit a hospital out of state for a raging UTI. I was prescribed an antibiotic, which, three days later gifted me with c.diff. My GI immediately called in the Dificid prescription, and I went on my way.

Six months later, in October 2017, I was administered an antibiotic for aspiration pneumonia while unconscious in the hospital, and three days after my first dose, I again had c.diff.

While Dificid did rid me of the infection once again, I realized that I was no longer able to take antibiotics without getting the c.diff infection. As a chronic illness patient, this is a scary notion, as antibiotics are used as a first line of defense for many indications. I began having proactive conversations with my providers about what other choices would be if the need arose.

Preventative measures

This past summer, during our first round of In-Vitro Fertilization, I had to take a 5 day course of Doxycycline to prevent infection from one of the procedures I was having done. My GI doctor agreed that I could take the opportunity to try something proactively. Instead of waiting to get the c. diff infection, I took Dificid alongside my antibiotic starting the same morning. I was a little shocked, but super pumped, when this strategy worked and I did not contract the infection!

Going forward, this is something that my doctors and I will always need to be cognizant of, and it is possible that a more aggressive c.diff treatment such as a fecal transplant may need to be in my future.

I’m very interested in your experiences! If you’ve had c.diff more than once, have you ever been able to trace it back to something like antibiotic use?