C difficle (Clostridioides difficle or c diff for short) is a spore based bacterial infection which secretes toxins that eat away at your intestines, causing inflammation and severe diarrhea.
C difficle is a super bug, which means it’s super tricky to get rid of and some strains are resistant to antibiotics. This infection is hard to get rid of because of the spores that will hide and lay dormant inside of you, waiting for the opportunity when your gut flora is thrown off and the bad bacteria overpower and take over the good guys in your gut microbiota.
C Diff Symptoms
According to the CDC, these are the symptoms of c diff:
- Severe diarrhea
- Fever
- Stomach tenderness or pain
- Loss of appetite
- Nausea
But it’s not the same for everyone.
My first stool sample was rock solid. It’s different for everyone, but here is a great example of how it happens for some people, some of the more subtle signs or progression for those who relapse often:
1. Extreme fatigue starts it all off. I get so tired that I end up sleeping all the time.
2. Hot flashes/Sweats/Chills alternated. Sweat drips from all parts of my body, even when doing nothing. Seriously, even if just sitting in one place, there are times when sweat seems to pour from my entire body… arms, legs, neck, torso, and head.
3. Crabby. I get very crabby and short tempered. Completely opposite of my normal character. The psychological aspects seem to begin just prior to bowel changes.
4. Hips, low back, sacroiliac joints, and femur bones become excruciatingly painful. Dull aches, stiffness, and sharp/stabbing pains.
5. Eating causing burning/stabbing/aching/pulling pains in the mid abdomen (the area I refer to as the triangle of doom) and then even drinking room temperature water causes such intense burning pain that I just stop eating and drinking altogether.
6. Stools start to change from normal Bristol #3 stools to brown rabbit pellet type, then to orange mush, then yellow diarrhea.
7. Rapid transit of stools after eating or drinking anything.
-Lisa Neudecker (Facebook C Diff Support Ring Leader)
The symptoms begin with #1 and then progress, seemingly one by one, until symptom #7 hits with a vengeance.
This was more like my progression… and each time felt a little different for me.
C Diff Infection
Round 1
Timeframe:
Started nocturnal diarrhea in Dec. 2017, other symptoms slowly came until finally diagnosed end of Feb. 2018. In and out of the ER, admitted for a week, and “recovered” at home. Read the full timeframe over on the My Gut Stuff Story page.
My C Diff Symptoms:
- constant nausea
- no appetite
- alternating BMs
- nocturnal diarrhea
- night cold sweats
- explosive, urgent, foamy yellow mucousy diarrhea that floated/broke apart into a cloud, evacuating my ass every 5 minutes or after any food/water [more info about c diff poop here]
- cramping & pain from my boobs to my raw asshole
- vomiting
- dehydration
- bloated AF
- severe and sudden weight loss, I lost more weight in the months following my active infection, rather 40lbs in 3 months. I went from 115lbs down to 75lbs… 75lbs in my early twenties wtf
- hair loss – continues afterwards for months
- teeth / taste in mouth is weird
- kidney issues like peeing A LOT (can lead to kidney failure)
- bleeding from the bootyhole
- anxiety, PTSD, depression, and lingering mental health issues because LITERALLY YOUR DIGESTIVE SYSTEM IS RESPONSIBLE FOR ABSORBING NEUROTRANSMITTERS, HORMONES, and things we need like serotonin, seriously how are we supposed to win?
C Diff Treatment:
I say “treatment” but I feel that my c diff was not resolved, the doctors didn’t magically fix me. For some lucky bitches, they have 1 round of vanco and they are fine. Totally normal. IT BLOWS MY MIND, but I know of plenty of these “normals” with no after issues.
- Flagyl
- Vancomycin
My experience with Flagyl was HORRENDOUS. It is no longer even recommended for c diff. 🚩 Again, I didn’t even know I had c diff or what it was before I was diagnosed. I trusted the doctors to take care of me. I got SUPER sick after starting Flagyl. I couldn’t stop pooping. I am serious when I say I couldn’t leave the bathroom for 7 days. I slept on a blanket in the corner of the bathroom, 1 step from the toilet. I was unable to keep my pills down, even a little sip of water would give me straight liquid diarrhea within .2 seconds of swallowing. Then the puking started too, I was already sure I was dehydrated already. In and out of the ER, I was finally admitted the forth time and they changed me over to Vancomycin.
I did not do anything to put myself at risk. What are the risks for c diff? Read those here. No hospital stays, no recent antibiotics, no traveling… etc. I will never know how I acquired my first round of c diff, not having any closure is tough… How do you protect yourself if you don’t know where/how we got this? These questions and thoughts go more into depth in my mental health posts, but it’s becoming more and more known for being a “community acquired” illness.
I had to change a lot of things, I didn’t get better. Sure, in the doctor’s eyes, my diarrhea had subsided, “I’m better” – but I was still sick.
C Diff Relapse & SIBO
Round 2
Between c diff rounds 1 & 2, in May 2018, I was diagnosed with SIBO (Small Intestine Bacterial Overgrowth). I thought I was doing better with the new diet/lifestyle changes, but I started puking after “safe foods” and my BMs were crazy ranges from hard to soft multiple times a day weird during this time. I had to take antibiotics for this, but also REALLY changed my diet.
Timeframe:
A YEAR AND A HALF LATER… Out of nowhere, the middle of September 2019, I was having what I thought was an IBS flare up. Several days of abnormal poops, but then I had the floaty, tiny, no food needed, yellow mushy poops and I KNEW it was back. I was sick over my birthday… alone, isolated, struggling to survive, it broke my heart.
My C Diff Relapse Symptoms:
I still had the same symptoms as my first round, but I thought it was a flare up, after stressful times I would get:
- constant nausea (normal for my anxious times)
- no appetite (goes with the nausea, although I usually do not have much of an appetite now)
- urgent squishy, ‘hot snakes’, ‘pencil’ poops – thin long mushy break apart turds
- alternating poop consistency (I would have ^ but then a hard rabbit turd the next time)
- sweats (and now I am MUCH thinner, no excuse for sweating at all, I’m always COLD)
- once the floaty, no reason for so many poops, no turd shape, just mushy mucous yellow clouds came – I KNEW.
- rapidly I lost weight, like 25lbs or so, and had trouble for MONTHS to gain any weight, which is a struggle when you have zero appetite and eating becomes a CHORE & confusing
- again my teeth/mouth had a weird taste/feel
- A LOT of hair loss
- PTSD, depression, anxiety, feeling like a leper
“Treatment”
I knew better this time.
I had rage, anger for the continuous disappointment from multiple doctors, dietitians, nutritionists, specialists, that motivated me. I researched SO MUCH, I had to advocate for myself. These tRusTed HeALth pRofeSsioNaLs were not helping me, I didn’t have ANY guidance and honestly started losing a lot of trust. I did have some community; I learned from science articles, reddit, even facebook. But I was still so so so alone (which is why I created this site).
With this motivation and education, I demanded they give me the “best available option” for c diff:
- Dificid
I want to disclose that even with insurance, they were asking $4,900.00 for 20 pills. A 10 day antibiotic of 20 tablets, almost $5k out of pocket. My pharmacist sister in law somehow found a coupon and I was able to get it for around $800, but that is still A LOT for 20 pills. 🚩
Yet, this is the best option because unlike the broad spectrum antibiotics like Flagyl and Vancomycin, Dificid is supposed to target c diff specifically. It is supposed to target the spores, rather than allowing them to germinate like on Vancomycin. I can say it was easier on my body physically, I was not throwing up as bad with Dificid. Only once this time! And it was one of the first doses, there was a lot going on too. The stress of this on the mind, body, and soul – is no joke. I literally thought I was dying every time.
After my 10 days of antibiotics, the doctor told me to wait at least 7 days and I could try testing again, at the time I tested negative. Over the years between bouts, I have tested several times when flare ups would get bad, I would get negative tests. I say this because some people will always be positive… That ain’t me, but it’s hard to not think that sometimes.
Round 3 – 2021
Timeframe:
ANOTHER YEAR AND A HALF LATER… alright it’s the end of April – May 2021, we are still in pandemic mode, I haven’t really left the house in over a year. Nothing actually seemed like a recent risk? I did get my second COVID vaccine about a week before I relapsed, but I did ask the community and it seems no one else relapsed from it. Stress? Eating Pick-Up food? Gardening? Fuck. I will never know.
Recurring C Diff Symptoms:
- a few days of alternating BMs from pencil poops to tiny hard rabbit turds, but the pencil poops kept coming back even after going to a very plain strict diet
- brain fog – for real, I can’t remember or even make sentences
- no appetite along with lingering nausea alllllll the time
- gurgling, uneasy/uncomfortable pain, and “weird sick” feeling in stomach/intestines
- I thought it was a flare up, but I felt so weird, I requested a sample and it came back negative… My heart literally died. This was the hardest hitting positive yet…
- all the old symptoms set in quickly, the aches, the constant shits after every sip/bite of anything, the brain fog, hair loss, mouth stuff, etc. I caught it even quicker this time and started my meds the same day that the yellow weird floaty poops came
“Treatment”
As soon as I got the positive result, Dificid was ordered. After my second bout, my internal medicine doctor said that we exhausted all of my options, I had Flagyl, Vanco, and Dificid. Those are the go-to antibiotics for C Diff, if those don’t work your last option is a FMT.
What is a FMT?
A FECAL MICROBIAL TRANSPLANT. Yup. That’s putting a healthy, tested poop into a sick person to replenish their gut microbe. So after getting c diff for the third time, I was finally going to be referred to the fmt specialist. However, the medical professionals are SLOW AS FUCK. Sorry, but I should NOT have to call to follow up on my sample, to call the lab to follow up on results, the doctor to follow up on the referral, which meant talking to the nurses in each department at both my main medical provider AND the new fmt health provider. It’s fucking chaos, not to mention sad and I am barely brain functional trying to advocate and move the process along. Apparently, this is called:
But by the time that I called around and got the referral in place, I was already done with my:
- Dificid
My research shows that the best time is to do the fmt shortly after antibiotics, like 24-48 hours after but the earliest I could even TALK to a fmt specialist was over a month after.
NOW…
That brings us to TODAY, where my appointment with Dr. FMT is slowly approaching. I’ll let you all know how it goes… it feels like there is a lot riding on this, but I have been hurt too many times by careless medical staff. So I’m not sure how it will go.
*Trying to stay positive, but not get my hopes up..*
Turd Testimony 