Prophylactic Treatment of Recurrent C. Diff With Crohn's

While I live with Crohn's disease that's currently in remission, I am also actively struggling with infertility. For the last 4 years, I've either been in the midst of fertility treatments, pregnant, breastfeeding, or having a miscarriage. It's been extremely lengthy, physically and emotionally agonizing, and forever complicated by my body's unique environment.

I've shared before that I have a complicated history with C. diff (also known as Clostridioides difficile or C. difficile).

C. diff and Crohn's

From my first infection to learning that my system somehow manages to get C. diff every time I take an antibiotic, it's been a nightmare to balance. In truth, one day I will seek further, more intense treatment to stop the recurring infection. But for now, the best I can do is aim to treat it prophylactically before it occurs.

For the most part, I've been diligent about avoiding any antibiotics that weren't 150% necessary. However, when going through back to back-to-back routine surgical procedures to extract eggs, biopsy uterine lining, and implant embryos, it's actually impossible to prevent all antibiotic usage.

Pairing regular antibiotics with Dificid

During the first year of recurring C. diff, I found that Dificid was the magic medication to treat my infection. Vancomycin, Flagyl, and/or Ciproflaxin just didn't to do it. This alone is fine - Dificid is an oral pill, I took twice daily for 10 days. No big deal, right? Wrong. Dificid has NO generic option, is extremely expensive, insurance companies never want to approve it, and most pharmacies don't stock it.

Now, when you combine those details with the fact that any time any doctor prescribes me a regular antibiotic, I also need to take a course of Dificid, you see how proactively treating this infection is agonizing.

Preventing C. diff infection

Here's how I approach the process. Generally, I have a heads up about surgical procedures related to infertility. Note: There have been 2 instances in which I've been given an antibiotic via IV while sedated, and I'll talk about handling that type of situation momentarily. With warning, I receive 2 prescriptions – one from my reproductive endocrinologist (or other prescribing specialist) for a routine antibiotic, and a matching one from my GI for Dificid.

Insurance headaches

I take both prescriptions to the pharmacy, where I'm told that Dificid is going to cost approximately $5,000 out-of-pocket and will take 3-5 days to get in stock. I leave the pharmacy, and call my insurance company. In the past, I've been on insurance plans where the prescription benefits are managed by the same company as my medical insurance, by a different company as my medical insurance, or a combination of the 2. Sometimes I have to talk to multiple people.

Once I explain why I need the medication, some sort of authorization code is entered on the administrative end of things. About 3 hours later, I call the pharmacy to ensure the prescription request has been approved by my insurance. Then, I ask how long it'll take the pharmacy to obtain the medication. On the day the medication is due to arrive, I'll call the pharmacy at lunchtime to check if it's been logged in. Sometimes, I'm told it'll be another day or 2.

This headache song and dance usually ends okay – I just wait to start the routine antibiotic until I have my Dificid on hand, and then I start them at the same time.

As if Crohn's wasn't enough of a nightmare

As I mentioned above, there have been a few times in which an exception has occurred. These are situations in which my already-high anxiety is off the charts, and the addition of an antibiotic through my IV, while I am unconscious, is completely undesirable and also unfortunately totally necessary. In these cases, I have to backtrack.

Getting the Dificid still takes a few days and some massive headaches. And by the time it's obtained, it most likely must kill the C. diff infection rather than just prevent it from occurring.

If anyone else lives in this nightmare, I just wanted you to know you're not alone, and what I've been doing to manage it kind-of-sort-of works.