“It’s not a big deal” the nurse said over the phone, as she gave me the diagnosis I have been waiting on for months…

My Background & (First) Diagnosis

Health Background

Up until 2017, I was a healthy 21 year old woman with no known allergies or intolerances/sensitivities of any kind (other than chronic “inherited” migraines, in which I’ve honestly become pretty numb to. Some are super bad and can’t be ignored but I rarely pass out from them anymore). Medication wise I wasn’t “on” anything, I was fully vaccinated, always got my flu shot and any shots (ma was a nurse) and recently had the very long withdrawal process of getting off of amitriptyline because it wasn’t working and I didn’t want to keep upping my dosage. I would take antibiotics as prescribed, but I wasn’t necessarily a very sick person so it wasn’t like super often.

Poop Schedule

I would poop like once every 3 days – no pain, no thoughts, no worries, normal stools. In college I saw some anxiety, I didn’t know it at the time (*eye roll* you’ll notice this is a trend), but before super important finals/projects I would have “nervous diarrhea” for awhile before and after. Then a day later I would get a migraine. So, I accounted it all to be stress related. Not a big deal, didn’t really think about it (later this made me think I had anxiety or ibs flares related to stress- more on that later, gator). 

Womb to Woman Diet

I was born in the 90s, to a lower mid class family, in a small town. We ate lots of meat and potatoes growing up, I would say “limited” diversity – so beef, pork, chicken is all great, but usually we would get it pretty cheap or frozen. No mind to organics ever or anything of the sort. Processed foods became more and more popular in the 2000s-2010s, more affordable too. We never had soda pop in the house or loads of candy, but we had snacky foods like chips, ate at McDonald’s probably too much, and most of my relatives weigh on the heavy side with diabetes on both sides of the family. Sure – I ate salads, veggies, healthy foods, but I also ate too much junk (especially in college) and started drinking regularly once I was 21. I did some exercise, but nothing crazy. I also worked at a restaurant in 2017, they finally went bankrupt, but yuck you’d never eat at a restaurant if you knew some of the nasty shit that happened there. Ugh. 

So What Happened?

I had started a big girl job right after graduating college in May 2017. It was with an extremely small and TOXIC company, although I didn’t know that at the time. Between the workplace hostility and aggression, disgusting and weird physical environment (it was a trailer that was never cleaned, I’m in marketing, the company did “educational resources” to stay vague) and the job was extremely stressful. Before this career, I was fine with stress. I was a lifeguard for 4 different pools, taught swimming lessons, dealt with emergencies and odd customers. Anyways, the workplace decided to get two cats from a rescue, but for some reason I had to take care of them (?) and one was super sick upon arrival with nasty diarrhea. I had to clean up piles of shit all over this nasty mice ridden trailer. Y’all. 🚩 RED. FLAGS. 🚩

Once the holidays came round, any time I would drink too much, I was paying for it for days after. Even on my 21st birthday I was up til the brink of dawn, releasing liquid hell from my anus. I have emetophobia (or the fear of throwing up) so I would take that over puking anyways, I thought. 

Skip ahead to January 2018. I got the “stomach flu” for over a week, but no one else I knew had it (how did I get it?) or got it from me (that’s weird?) and also throwing up and shitting your brains out shouldn’t last an entire 8 day period. The doctor (Dr.#2 because I didn’t think my doctor was listening) assured me it was just a stomach bug… 🚩 Afterwards, my stomach was constantly “anxious” – riddled with NEVER ENDING nausea, uncomfortable churning and gurgling of my insides that were so loud it sounded like an orchestra at an aquarium, the gut feeling that something is off would never leave my mind. I hadn’t noticed my pooping became more frequent – like once a day. I chalked it up to all the caffeine I was drinking for my high demand job. We had a conference at the end of the month in Florida, there anytime I would have even a slight sip of alcohol, my stomach would flip. Every night I had nocturnal diarrhea, I was up for hours on the toilet. Maybe I’m becoming alcohol intolerant? Maybe I had something bad? Maybe it’s just from the anxiety of the trip/day? I should mention there was some drama at this conference that didn’t help things.

Moving on. 

Suddenly it’s February, things have not improved. I went back to the doctors (Dr.#1 again), they said it’s just my an anxiety, we can try a new medication. (Side note: why are doctors so quick to fucking push pills?🚩) I demanded it was something more, I usually could trust my gut, and that weird sick, “something bad will happen” feeling wouldn’t go away. They ordered a stool sample and I went on my way. 

How Nurses Deliver Diagnosis To Patients

“It’s not a big deal” the nurse said over the phone, as she told me I have a c diff infection and that I can pick up up my prescription. What is c diff? Much like most of the world, I’d never heard of this. 

What is C. Diff?

TLDR: worse than hell itself. Here is the LONG version…

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.

The symptoms of c diff according to the CDC are:

• Severe diarrhea
• Fever
• Stomach tenderness or pain
• Loss of appetite
• Nausea

But it’s not the same for everyone. 

I had way more issues, lasting issues, and each time felt a little different for me. I did not do anything to put myself at risk. There’s no known reason that I caught this, I’ll never have closure on any of my infections as each one seemed to come out of nowhere with no known exposure to risks.

What puts you at risk of getting C. Diff? Check out the risks here.

Don’t Fucking Google Your Disease

I know, that’s way easier said than done… You should be educated. That’s probably why you are here. But let me just say something that you need to be reminded:

THE INTERNET IS FULL OF MISERABLE TROLLS.

Every time I read a post, saw a post, did research, etc. I felt overwhelmed and disappointed. Usually, it’s unproductive and leads to more stress. These people usually only post when they are scared, miserable, or looking for help because they are feeling lost. This is a hard disease because doctors don’t seem to know as much as we hoped. I find myself constantly thinking “it’s 2021, we should have solutions by now!” or “modern medicine can create a covid vaccine in under a year, but we can’t get help?”

Also, WebMD is not a doctor. You don’t need to go down that rabbit hole.

YOUR JOURNEY WILL BE DIFFERENT. WE ARE ALL DIFFERENT. So take what you read with a grain of salt, always. Everyone who is healing from c diff will heal different. What you are feeling and going through is going to take time. Here is a post on mental side of C Diff, it’s not talked about enough.

Round 1 – “Resolution”

Anyways, after quick research of the diagnosis I quickly realized that this was a contagious easily spread disease (I was then working in a tiny 1 room building with 3 coworkers, I notified my absolute crazyass demon boss that I had received my diagnosis, what it was, how contagious was, how to clean the only bathroom we all shared, and left to fill and start my prescription for flagyl (or Metronidazole, a broad spectrum antibiotic that is NO LONGER RECOMMENDED FOR USE 🚩) [update: the fmt specialist said they had just published this info about a week or two before I was diagnosed. It’s hard to not still be upset that this fucked me up in the long run].

I got SUPER sick after starting Flagyl. I could not stop pooping, literally every 5 minutes. I am serious when I say I couldn’t leave the bathroom for 7 days. I slept on/with a blanket on the floor 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 I started throwing up too – everything was straight up stomach bile and a bright ugly yellow color, I was already positive I was dehydrated. After several times in and out of the ER for fluids, I was finally admitted the forth time where I stayed for 5 miserable, gross days and they changed me over to Vancomycin. This hospital was not a bit worried about spreading my c diff, I absolutely understand how hospitals are a huge risk for acquiring this shit. Many of the nurses used hand sanitizer, several doctors too. That doesn’t kill c diff, they didn’t have gowns on, gloves, face masks, nothing. 🚩

I got out as quickly as I could, finished the vanco at home and then waited until I could test again. Ok I don’t care what they tell me I do a retest at the end. Some doctors will:

“advise against retesting because there’s a possibility of false positives for you can shed c diff for weeks after treatment. If you wash your hands you should be fine.”

Quoted from an actual doctor… This *PEEVED* me off and made me want to be tested more, for the record.

I got sicker, rather than going back to normal like everyone kept saying. I know other people my age that acquired it and got rid of it with no issues, but I couldn’t eat everything like I used to, I was still struggling with food, gaining weight, anxiety, PTSD, cramping, post-infectious IBS that would send me into panic attacks, waking up at 3am with horrible gurgling and cramping that sends me urgently to the bathroom shaking. I went to the Doctor again saying this is not normal, I’m still loosing weight, still don’t have an appetite, still struggling. After some bloodwork, they determined everything was “normal” but were worried about my weight, rightly so – I lost over 30lbs in just a few months (from 115lbs to 75lbs). Also was taking florastor daily as prescribed.

I went to several doctors during this time, unsure why I wasn’t feeling better. I was bloated, gassy, alternating between constipation one day then several days of diarrhea, random foods that I thought were plain or safe were causing instant issues like bubble gut, loud gurgling, and massive cramping. Then the puking started. It was May 2018, I had friends that were graduating college several hours away from home (mind you these people also traveled to see me graduate the year before, so I felt like I owed it to them to be there) so I drove up 3 hours to see my now sister in law graduate, shortly after we had a dinner and the food instantly made me nauseous and crampy, I thought I could make it to her house to poop it out but as soon as we got in her driveway I was puking in a paper bag. She graciously let me shower and I went home rather than spending the weekend with her. The weekend following that, I went 6 hours to my college bestie’s graduation. I didn’t eat before hand or during, kept it real plain and hadn’t puked since – so I had chalked up the first episode to maybe some bad food. Once my bestie walked we went back to her place for beef kebabs over the grill, I made my own and with super plain safe foods, yet I wound up on her toilet with severe diarrhea and throwing up at the same time. I cried so hard, I just wanted to celebrate with them. I showered and drove home that same night. Of course we had construction and I was so worried I was going to have to drop off some timber in front of everyone (traffic, workers, etc.) but thankfully I was able to make it to a dirt road each time I had to stop during the drive, but why not just go to a gas station bathroom or something? Nope, no thank you. Public bathrooms are just such a risk. Nope. I travel with toilet paper all the time anyways. I took a pepto bismol (never take anti diarrhea meds like Imodium but pepto is ok! It actually binds to c diff) and I made it home.

SIBO – “Resolution”

So I went to the doctor, told them something is up again, they said to check for sibo but since I took pepto I would have to wait to do the testing. The test entailed breathing into a test tube and sending that off to the lab to be checked.

What Is SIBO?

SIBO stands for small intestine bacterial overgrowth, and there are resolutions other that antibiotics. I did not know this at the time.

SIBO Treatments

These are just the things I am currently aware of. This is a hot topic in the gut community, so there is more info out there I am sure…

• Antibiotics
• SIBO diet
• Elemental Diet Powder*

When I was diagnosed with SIBO, the doctor prescribed rifaximin (Xifaxan) an antibiotic that they promised would be fine after c diff (even though there was a warning in the fine print). So that was all the doctors said, no follow up – no items to avoid or to be aware of. This kills me, I wish doctors would go through the whole process better.

I didn’t leave my house during those 10 days of antibiotics, I continued my probiotics the whole time – which at the time, was Culturelle & Florastor, I also had tried Align sample, and I think we changed over to Dr. O at that time.. more on supplements over in this post. I cleaned like I was still sick, I didn’t feel good at all during this time. I wasn’t getting better.

I did a lot of research in those 10 days, I had lost my job (you can learn more about that here) and was forced into a situation where I had to learn to stand up for myself and advocate. If something felt wrong I needed to speak up, and that also overflowed over into my health too. I discovered that I needed to trust my gut that has been loud as hell, yelling at me to stop letting doctors push me around. Stop being passive about getting better, I have one body and I have to take care of it because they doctors just can’t – whether they just don’t know, don’t care, don’t have the experience, etc.

I learned that there’s something called the SIBO diet, I will go into detail about that here. The worst part about this option is the internet is not consistent, the resources are not consistent, I couldn’t find straight answers on what is actually ok and not ok to be eating. I even went to a c diff specialist that sent me to a nutritionist, he didn’t care that I was still losing weight and not getting better after all these antibiotics and my attempt to follow this SIBO diet even though many of the ok to eat foods were not being tolerated by my body. This limited what I could manage to eat. She was brand new out of college and was not helpful. I didn’t learn anything I didn’t already know from her. So back to researching on my own. I modified the diet and honestly it just took a lot of time, a lot of trial and error, a lot of trying different supplements, all of this is in my diet and lifestyle post.

Later (after my second bout of c diff, I was not diagnosed with sibo however, I was still struggling with the same dietary & weight issues) I did more research into the SIBO diet just because I worried about sugars the most and was really trying to focus on food again, I discovered The Londoner In Sydney, where she talks about her journey and how they treated her SIBO in Australia, with a elemental diet powder. This powder is essentially what astronauts eat to make sure they get everything they need to survive, kind of like baby formula. This is obviously something a doctor needs to order for you, as eating disorders are on the rise this could be very dangerous. I respect her journey because she’s honest about the very real disappointment of not having a magic solution from the medical community, all of the trial and error that goes into play, and how to continue to look for answers.

I requested that my doctor order it, but only after going over a plan. I did not want to cut out everything and only do the elemental powder/shakes, I actually wanted to use it more like a supplemental meal. So I would have my normal meals, but in between lunch and dinner I would do a big elemental shake to make sure I was getting everything I needed in my diet. At this point a lot of foods were going through me and coming out the same, I was worried about malabsorption and whether my body was actually getting what it needed. I was just so skinny and couldn’t put on the pounds. It was gross, not great on my tummy, but I wanted to starve out the bad bacteria. These bad guys were pummeling my good bacteria and I wanted to fix the dysmotility (condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs – from musclehealth.org).

Slowly I gained weight, I modified my own diet to keep evolving as I healed. Then just as I was starting to feel normalish again, it turned around.

Round 2 – C Diff Relapse 1

A year and a half after my first diagnoses of c diff, I started having some abnormal poops again. The nausea hit and I thought it was anxiety or maybe post infectious IBS flare up (I suspected, but was not officially diagnosed). September 2019, we went to go see the new IT movie and I remember it just finishing and I raced out to use the bathroom, it was then I recognized the fluffy, tiny, bubbly yellow poops. I knew the c diff monster was back.

I requested a stool sample and when the positive test came back, I demanded dificid right away, my depression fell into the pits of despair, and I notified my employer that I would be out for awhile. The 20 tablets of dificid for 10 days was almost 5k out of pocket – go read the c diff post about how this treatment played out.

Once I got a little better, we literally moved houses to help me recover thinking it was my environment possibly making me sick. We bought our first home due to c diff. The move was super stressful and we threw out almost everything. We bought a new bed, couch, tv, table, and even dishware and silverware. We really hoped this was a new beginning! I still cleaned with bleach and never missed a day of florastor.

Round 3 – C Diff Relapse 2

Other than the occasional flare up, in which every once a while I would even submit a stool sample when I was super worried, all came back negative and the flare would eventually settle itself out. Until one of those tests, a year and a half after my second bout, came back positive.

This shattered my soul.

This was the hardest relapse. I had another responsible, my husband, and a puppy now. I isolated immediately to the basement, the bathroom (I spent 4 bottles of spray bleach on in the month I was isolated), and demanded dificid again. You can read the mental side of this in my post, but c diff has this way of flipping your life upside down.

Read about my c diff treatment #3 and appointment with a fmt doctor.

My Gut Healing Journey Isn’t Over

Even after all of this – if you’ve followed me this far, you know I’ve tried everything so far… But as much as I wish my body would be back to normal, it seems that my old normal will never be an option again. As I’ve questioned, what is normal anyways?

Life Right Now…