Needing Help and Advice
I am at the beginning of my first journey with C-Diff and I am terrified - seeking some advice.
Since 2021, I have struggled with post-infectious giardiasis, leading to a diagnosis of Mast Cell Activation Syndrome, which I have tried to manage through various medications and diet. In 2024 I had my first brush with Covid and it was horrific. Admitted to the hospital for six days with nonstop green diarrhea, fainting, and fever (though no respiratory symptoms). Eight months later, my incredible immunology/allergy team prescribed IVIG therapy, and for the first time in five years, I started to turn a corner. Since being on IVIG, my quality of life has started to resemble something more normal - I could gain weight, eat more foods, and even go out occasionally. But then I developed some gnawing, dull upper abdominal pain, and my GI doc ordered an x-ray. Results showed a partial blockage in the transverse colon. She prescribed several courses of colon prep to remove it. I asked the GI if the sustained prep protocol might impact the microbiome. She said yes - unlike a standard 12-hour prep, this would be more sustained in order to dislodge the blockage.
I did the protocol, and it was painful and horrific - but some hardened masses of stool did come out. I did notice, however, that I felt different after. The gnawing pain in my abdomen was gone, but my stools were no longer firm and brown - they were soft and orange. They weren't really recovering. I had already been on a high-strength prescription probiotic that my GI had ordered, so I kept up with that, mindful of her warning about my microbiome changing. And then, last week, the C-diff symptoms started.
I began having very sticky, mushy stools that smelled very sweet. I knew that people had mentioned the smell as being a hallmark of this infection. It's come and gone over the previous seven days, but tonight it's kicking into overdrive, and I am terrified about what the next few weeks/months will look like. Stools are giving way to diarrhea again and basically smell like grape juice and maple syrup. I have not tested positive yet but the persistence of the symptoms is striking.
So far:
- A stool study for C-diff was collected yesterday and should be processed this week
- I am being screened for Candida as this is also known to produce a sweet odor
- I am again reducing my diet to the low-fodmap basics
- Basically planning on staying close to the bathroom for the next several weeks/months
- Expecting a major MCAS flair that may not be controllable through IVIG (I am seeing both the immunologist and allergist this week to explain what is going on).
Has anyone else with MCAS or other pre-existing PI gut issues fully recovered from C-diff?