C. Diff Or "Just" A Flare?

C. diff - clostridium difficile - is terrifying. There is no alternative words to describe the bacteria to anyone but that. “Just” a flare or something more serious?

What's it like to have C. Diff with Crohn's disease?

When you are in the hospital, you’re treated like you have the plague, and it’s very visible that you are under certain protocols when there are signs all over and people come in and out of your room in gowns and face masks. It’s terrifying. It’s isolating. It’s terribly isolating.

I’ve had several bouts of it over the past year & a half. There were moments I felt like I had zero energy to even make it up the stairs to the bathroom to vomit, evacuate my bowels, and sometimes I didn’t make it. Not only do you feel incredibly ill from the actual bacteria that has invaded your gut and GI tract, but the antibiotics that push the virus out of your system makes you feel so much more ill.

I deal with an awful lot of vomiting and nausea with my Crohn's; it’s something we’ve come to know over the past 4 years while I’ve really struggled with fluid retention and staying hydrated while I have vomited so much. This left me with going to infusion therapy nearly every day in order just to come through and make it out to the other side of the bacteria.

And wouldn’t you know the next time I had to be on antibiotics for a UTI and kidney infection, it came right back.

The fear of getting C. Diff again

So now, whenever I have extreme nausea, a very rapid change in my bowels and just an overall really awful feeling, I have always assumed the worst and opted to get a check because of how long I had it for when it presented itself on multiple occasions.

I have had SO many scares and fears of being on antibiotics, which can cause C. Diff. I have probably unintentionally caused myself way more stress and anxiety that I needed to. But since mental health plays a very big role in part of my actual care from different members of my care team, I’m honest when I need help.

After my first (very) long bout with it, I started to develop some weird and odd behaviors I normally would never do unless I’m extremely stressed out, in a massive wave of PTSD or mentally unwell due to declining physical health. I started to wash my hands, obsessively. I bought just about every bleaching product you can imagine. And my anxiety hit an all-time high.

Isolation because of C. Diff and Crohn's

Here I was, trying to get through summer, cooped up inside. I felt alone. I feel extremely defeated. And just when we thought we were in the home stretch, it just kept coming back. Fecal transplant is being discussed. While many people who have been on it have been known to take preventive antibiotics for C. Diff per their provider when the patient might need antibiotics for a different condition, like an abscess or a UTI, risk goes into every decision made now. And I was already very apprehensive about antibiotics already.

And if you’re “lucky” enough to stay home and sort-of quarantine yourself, it can lock you inside for weeks. I’m saying that because I’ve been there. It’s really, really hard to come out of a “C. Diff funk” for so many reasons. You will always wonder when, not if, it will come back. I isolated myself so much even though my house was bleachy clean, no one was allowed to come over for months. I hated living there! The only room I ever saw was the bathroom and I spent most of the summer stuck to the cold tile floor of my loft.

How do you get over the scary feeling of “is this C Diff? Or is it ‘just’ my IBD acting up?