March 19, 2018
by Kit

Written by Brenna Darazs

There is something that all C. diff survivors know, and you can’t always see it. We may look “normal,” even healthy. We may seem to be thriving, and little of what is happening underneath shows through. Or we may appear weak and frail, and one could assume there is some pain, some suffering, some lingering discomfort. But in reality, there is a far deeper experience happening than may appear on the surface. What we know is this: C. diff has deep and lasting effects on our lives long after the last test comes back negative.

There are several areas that recovery encompasses, if you can call it recovery. For some of us it’s more of a remission, because a lot of us believe it is only a matter of time before we have a recurrence. We live with a new normal, as many illnesses require. The lasting impact of C. diff can be broken down into emotional, financial and physical reverberations. Let’s go in reverse alphabetical order.

Physically, there are many things you may not be able to do anymore, or, if you can, you may perform them at a much lower level of mobility. Low levels of energy are to be expected. Pain can be present indefinitely. Memory can be an issue as well. I can no longer walk any substantial distance or stand for long periods of time without needing to rest. The pain in my lower back continues to flare. Some days are better than others, and I hardly notice it. On bad days I can’t bend over to tie my shoes, dry my feet or pick something up off the floor. Going up and down stairs is challenging. Some days my body feels like it’s on fire, and I have to lie down until it passes. I still have many days with diarrhea and nausea. I have episodes of excruciating pain in my left hip and right thigh. I am only six months out from my last fecal transplant, so I hold on to the hope that many of these things will fade in time, but that is an unknown for me and many other survivors.

An important yet often overlooked impact of C. diff is the financial aspect of managing the disease, and this is if you are fortunate enough to be diagnosed quickly and correctly. There may be additional specialist visits required to even get a diagnosis. Many of the first-line antibiotics that are prescribed to fight the infection are expensive, and depending on your health insurance, you may be required to pay a large portion out-of-pocket. When the illness is first acquired and acute, there are emergency room visits and sometimes ambulance rides. There is diagnostic testing, such as CT scans of the abdomen, blood-work and stool tests. And that’s if you go the route of traditional medicine. There is pain medication, supplements, special foods, and pain management through massage and acupuncture. Then there are fecal transplants, and that’s if you are lucky enough to be “one and done.” You’ll have travel and lodging if you don’t live near a provider who can or will administer one.  There are IVs for nutrition to bypass your ravaged digestive tract (a Myers’ cocktail) and IVs with saline to keep you hydrated. Let’s not forget about the therapy many of us need for the post-traumatic stress that C. diff causes. Many of these things are not covered by insurance at all. Looking at some of these costs over a period of months or years, you are faced with a hefty load of medical debt.

Lastly, a hugely important and lasting complication of C. diff is the emotional state in which it leaves the patient, cured or not. At first, even with a diagnosis of eradication, there is a lingering doubt about whether it is really gone, especially when so many of the physical aspects remain. There is anger, so much anger. Anger at the doctors, the hospital where you were infected, the inability to get well, the fact that you caught it in the first place. I even blamed myself for deciding to get the surgery at all! There is frustration. This can be directed at doctors, nurses, your insurance company, your family and friends, or anyone who happens to be connected with your care. Because there are so many roadblocks to diagnosis and treatment, a deep sense of mistrust of doctors and hospitals can remain with you indefinitely. Then there is fear, and a lot of it. The first time, and every time after, you have diarrhea, you immediately suspect a relapse. You are constantly afraid it’s come back, and this time you will die. I will still wake up in a cold sweat in the middle of the night thinking I still have C. diff and freeze in terror. I will cry and shake and ruminate over every surface I touched that day and how many times I washed my hands and if it was long enough. Did I eat off a fork I didn’t personally wipe off? The weight of the experience in its entirety will cause me to collapse with an anxiety attack, unable to leave my house that day.

Not everyone experiences all of these residual consequences, but they are all there, waiting to be felt. Waiting to be had. Like a dormant virus that needs only one trigger to poke out and ravage. And ravage it does. So the term ‘cured’ isn’t always completely accurate. A lot of us still live with C. diff on a daily basis. There is life before C. diff and life after C. diff. I feel a lot of happiness that I’m alive, that I’m still here. And I’m grateful too. So very grateful. And many days that’s enough to override the other noise. I’d like to think that someday happiness will be the only lasting emotion connected with surviving C. diff. But for now, we continue on, fighting, succeeding, failing and living. Gratefully, we continue living.

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5 Comments

  1. Lori says:

    You hit that nail on the head. The part that stopped my heart for a second was the pain in the right thigh. I have been cdiff free since late 2016 but just recently diagnosed with Meralgia Paresthetica which causes severe cutaneous pain in my right thigh. Could that really be yet another byproduct of having cdiff? It just never ends. I agree with everything in this post

    1. Brenna says:

      Hi Lori,

      Thanks so much for your comment. Yes, the right thigh pain is confusing. It can be excruciating one day and mild the next. I’ve never had any official diagnosis relating to it. I never had it before the C. diff, so it leads me to believe it must be related. I use ibuprofen or acetaminophen and an occasional deep tissue massage to manage the pain. A heating pad seems to work pretty well, too.

      1. Elizabeth says:

        Hi Brenna,

        Have you found that you’ve lost faith in your HCPs and/or health-care system?

        Thanks,
        Elizabeth

  2. Suzanne says:

    Thank you!

    1. Brenna says:

      You are very welcome, Suzanne.

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