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From Alabama

Karl N.


At the time of writing this personal account of my C. diff journey I am a 36 year old male that has had Crohn’s disease for 26 years.

My C. diff journey starts in March 2022. Towards the end of the month I started noticing an increase in bowel movement frequency and a trend towards nothing but diarrhea. Diarrhea had never been a part of my Crohn’s symptom profile and I suspected something was wrong. My doctors just assumed that this new diarrhea was a Crohn’s symptom, but I insisted that I be tested for C. diff, which came back positive. I was then prescribed my first round of vancomycin, which resulted in no improvement in symptoms.

In May 2022 I was prescribed Dificid, which seemed to help briefly for a couple weeks but ultimately the symptoms returned fully.In June 2022 I was prescribed vancomycin again, which again granted no relief from symptoms.For the rest of 2022, I was so depressed that I gave up trying to fight the infection and just tried to live day to day. I became afraid to leave my house unless I absolutely had to. I also started to avoid eating as my mind associated eating food with the need to go to the bathroom. I lost weight and muscle mass.

At the beginning of 2023, I approached my gastroenterologist (GI) and asked about an FMT. The procedure was performed and it seemed to help for a few months, but ultimately, the symptoms returned.

In late 2023, the frequent bathroom trips were so bad that I started sleeping on the floor outside of my bathroom every night, just to be that much closer for when the urge inevitably came.

In February 2024, on the recommendation of my nutritionist, I requested that my GI doctor prescribe Vowst. They agreed and I was prescribed a pre-course course of Dificid, followed by a bowel cleanse. After that came the 3 day course of Vowst. Vowst ultimately did clear the c diff infection and I have tested clear of C. diff toxins since.

However, my medical journey doesn’t quite stop there. During the time the C. diff infection was going, my GI doctor could not adequately treat the Crohn’s disease flare that was growing worse and worse. At the end of February, I was admitted to the hospital for my severe Crohn’s disease flare. I spent 9 days in the hospital.

Then, on August 23, 2024, I was admitted to the hospital again with a chronic cough, still going through the worst Crohn’s disease flare of my life. Within 48 hours, I reported trouble breathing to a nurse. I regained consciousness 2 days later in cardiac ICU, not knowing how or why I was there. I was told that I was going through advanced heart failure. I spent a total of 6 days in ICU during which time my body weight dropped from 135 lbs to 107 lbs. It was determined that my left ventricle was enlarged and my mitral valve could not close sufficiently. My ejection fraction was estimated to be 10-15%. The hospital evaluated me for a possible heart transplant. I underwent surgery to have a mitral valve clip placed inside my heart which did help to improve mitral valve function.

I spent the next 6 weeks in the hospital. Thankfully my body responded to heart failure medication and I was discharged on October 4th, 2024. At discharge, I was so weak that I had to use a cane to get around my own house and a walker whenever I went outside.

I spent the rest of 2024 and all of 2025 recovering. The Crohn’s began to improve due to a dual therapy of Entivyo infusions and Skyrizi injections. By the end of 2024 my heart function (ejection fraction) improved to 45-50%.

At this point, we do not know where I got the C. diff infection from. However, I suspect that it was largely the result of my overuse of peptobismal for years to help control day to day Crohn’s symptoms as well as a course of antibiotics I took in July of 2021 in the lead up to an abscess and fistula surgery I had.

Regarding the heart failure, again, we have no concrete proof of what caused it. I have no family history of heart failure or heart disease. However, the theory that makes the most sense to me is the one that my nutritionist suggested. She told me that quite often people with eating disorders where they starve themselves, end up with heart failure as the body doesn’t have the appropriate nutrition it needs to maintain organ function and the heart wears itself out trying to keep the body alive.

I don’t have an eating disorder, but the combination of a severe Crohn’s flare (Crohn’s impairs the bodies ability to absorb nutrients from food) and the severe C. diff infection that took 2 years to finally clear ultimately conspired to give me the same result as someone with a starvation eating disorder.

The hard lessons I learned from this experience would be:
-If you truly suspect something is wrong, be insistent with your doctors and get tested.
-Do not ignore your body’s need for nutrition. This is especially true if you have any form of IBD
-It may take multiple treatment attempts to clear, but at least from my experience lasting relief is possible. Vowst is ultimately what worked for me.
-Avoid taking antacids unless absolutely necessary. And even then, try to only take them sparingly. I have pretty much thrown out all antacid medications in my house and avoid taking them completely now.

Age


Gender


Male

Length


Source


Hospital Acquired

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