My Story

The beginning:

It was a beautiful summer in 2012.  I was engaged to marry Dane and our families were excitedly clearing out a nook in the forest for our wedding. I had a great job as a mortgage banker and all of life’s adventures stood before me.

I nervously sat in the dentist’s chair getting a root canal, unaware my life was about to dramatically change. Clindamycin – a very strong antibiotic – was prescribed upon leaving in the event I developed an infection after the root canal.

Over the next few weeks, a growing discomfort in my intestines got my attention. It  quickly became unbearable.  I was stooling 10-14 times a day and in intense pain. The fatigue was overwhelming and my eyes began to hollow, tiredly looking back at me in the mirror.

I went to my doctor who gave me fluids and ran standard stool tests, warning me not to take ANYTHING to stop the diarrhea as the body needs to rid itself of any toxins.  I wish I had listened! That weekend was my best friend’s wedding and I was the maid of honor. I lay on the floor of my home clutching my dress, almost out of breath from the pain. I took anti-diarrhea medication to make it through.  Little did I know, by slowing down my gastric motility the toxins were eating away at my intestines. It could have even killed me had I developed toxic megacolon.

Once the medication wore off, the pain and diarrhea were even worse so my doctor quickly admitted me to the hospital.

“Have you taken any antibiotics lately?” The nurse kindly asked. My mind ran in reverse.

Yes. Yes, I had.

Antibiotics almost every three months for a sinus infection. Antibiotics for frequent UTIs. Antibiotics for walking pneumonia. Antibiotics for my root canal.

She brought The Hat and placed it over the toilet as green sickness poured out of me and the smell of absolute death filled the air.

Later that night, a new nurse returned in a full gown, mask and gloves, informed me I was now in isolation, that I had clostridium difficile, or c-diff for short, a very common intestinal infection that was easily treated. I’d be starting Flagyl, another antibiotic, which would certainly kill it and I’d be back to normal soon.

I picked up my cell and Googled c-diff right away and haunting words  began to stick out amongst the rest: “superbug,” “recurrence” and…“deadly.” This sharply contrasted the nonchalant diagnosis earlier.

The next morning, I was able to eat a piece of bacon and the doctor called it good. I was sent home with instructions to eat plenty of yogurt to help restore my gut flora.

I knew that a recurrence was possible but not likely as I took my last dosage of Flagyl at home.  Two days later, I started feeling oppressive fatigue coupled with pain and increased stool. The tests confirmed: c-diff was back.

The fight:

The next 7 months were an absolute living hell of pain, fatigue, dehydration and recurrences. I was hospitalized 6 times, for at least 5-7 days at a time.  I hadn’t been able to go to work. My boss was strangely silent as I told her that I couldn’t beat c-diff and she later told me her friend had just died from it. I counted 28  non-consecutive days of gut rest, living only on the IV fluids that went into my arm.  I couldn’t even drink water, or smell food, because it sent a rippling sickness throughout my body, causing my intestines terrible pain. My veins were always going bad or too dry to get a stick, so they’d wrap my arms in heated blankets and had to try again and again. Each time I stood up to go to the bathroom, I had to white-knuckle grip my pole for steadiness from sudden dizziness.  My dignity was gone as I filled the air with foul sickness, my fiance sitting outside the door, telling me I was beautiful.

I was now on a very high dose Vancomyacin, but unable to get off because the c-diff always returned within days. My parents kept asking me about a fecal transplant, or FMT for short, but I was against the idea because  first, well… it’s poop, and secondly, the doctors vehemently insisted FMT was the last resort. To them, I’d need to be sick for at least a year before they would even consider that option.

But, why?

I was  only 31, basically living in the dark isolation rooms of the geriatric ward, unable to even walk in the hall. I was devoping Crohn’s disease from the damaging recurrences. If I wasn’t hospitalized, I was getting pumped with IV fluids at my GI doctor’s office.  We had to postpone our honeymoon to Sweden, and I was barely out of the hospital long enough to get married. Wasn’t this supposed to be the happiest time of my life?  How sick did I have to get?

It all changed for me when I was in the hospital, yet again. My infectious disease doctor was grim and explained to me that he has seen too many die from c-diff and he was very worried about me. He also said he may have to remove my colon to get it under control.  Yet to him, the fecal transplant was still out of the question.

I had grown gravely ill, far from the delightful bride I always envisioned. That night, with Dane by my side, I felt my body giving up as I felt an odd sense of peace descend upon me.  I knew I would die that night and embraced it with the final thought, “It’s time for me to go.” Little did I know, my mother and Dane also had the same pressing feeling.

Somehow, I awoke. But this time with a new fire in my belly. I was doing the fecal transplant and nobody was going to stop me.

The Fecal Transplant:
Back in 2012, the fecal transplant had a proven success rate but was not yet approved by the FDA so it was done experimentally.  A clinic in Kansas City welcomed me kindly and compassionately.  The process was explained to me: I had to find a donor (now they have donors at some centers), who would need to be stool tested for certain pathogens, like c-diff, HIV, syphilis, etc… My father, eager to help, volunteered. They explained that I’d do a colonoscopy prep and the stool would then be administered into my colon via colonoscopy. Since my flora was wiped out, the healthy donor’s good bacteria would slowly populate and kill all the c-diff.

Everything went perfectly. I never saw the poo and was very happy about that! Upon leaving however, I asked the doctor to please keep me on Vancomycin because I was too scared to go off, as each time I did, I was again hospitalized. Unfortunately, neither one of us realized we just killed off all of the good stuff we just put in there.

So…I had another fecal transplant at another place, this time via NG tube. Yeah. Down the nose! This time, not taking any antibiotics afterward.

After my follow-up visits, my new doctor gently told me  it was safe to have hope. It could take a year to recover, I had been sick for so long, but all c-diff tests were negative. I was delighted, but also felt betrayed by my former doctors who had me suffer for months while this treatment was available and effective.

After some time, my body did slowly heal. Aside from the dread of recurrence, the fatigue with c-diff was one of the hardest things for me.  There would be days I could only stand long enough to blow dry my hair.

I’ve never had another recurrence since the transplant and I do not have  Crohn’s. I have my life back and Dane and I took that trip to Sweden. One of the most fantastic things about the transplant is my immune system’s response to it. Remember I said I was getting sinus infections every three months? After the fecal transplant and healing, I didn’t have so much as cold for two years. I know this may not be the case for everyone, but there was a noticeable difference in my immune health.  I’ve never needed to take antibiotics since.

But there there was something else having me feel funny…I was pregnant.

Click here to read Pearl’s story