In July 2016, I went to the ER and found out I had appendicitis. I was rushed into emergency surgery and in recovery I was given I.V antibiotics and was there for 4 days NPO. Once I went to the bathroom for the first time, I couldn’t pass gas easily and when I wiped there was pink staining when I wiped. I felt like something was wrong because there should not be any bleeding at all. I mentioned it to a nurse, but it wasn’t a lot so I think there was hope I would rest and heal up. When I was cleared to go home, I felt decent and went back to work a few days after that but started to feel more off and even less like myself and that pink staining was still there every time I went to the bathroom.

After 3 more days of recovery, it was a full week post op. I went back to work. I endured a full day but noticed I had worsening pain and tenderness in my abdomen towards the end of my shift and went to the ER. They did labs and CT and found I had a post operation intra abdominal abscess. This was an infection that had to be drained and I was given I.V. antibiotics as well as more clindamyacin to take at home just to be sure it was cleared. They said more blood in stool was probably from draining the infection and it would subside. It didn’t.

As time went on, I noticed I still wasn’t going to the bathroom normally at all. It was all liquid and there was more and more blood and thought I was bleeding out after surgery considering the large amount. I felt neglected because I mentioned my symptoms right after surgery like I was supposed to and followed the protocol as they were symptoms that are listed as red flags. I started to feel very nauseated and having chills and fevers so I went to Urgent Care and I was recommended more rest. I went home and rested because the pain was so bad but then I started wanting to eat and it got to a point where keeping food down at all wasn’t possible and I was in the bathroom with nausea and the runs but they were completely bloody minutes apart several times an hour. I felt horrible. I got to the hospital, and they finally explain to me that I have a rare superbug bacterial infection called C. Diff after they ran the stool sample. I was to go into isolation where everyone in the room would have to gown up, wear gloves, and masks around me as it was highly contagious. I was terrified.

I couldn’t endure what was to come and these bathroom trips wouldn’t slow down even on the specialized antibiotics Vacomycin and Flagyl. They put me on Dilaudid for severe pain and cramping that was more severe than labor contractions at some points. They wore me down all day and night along with gassiness and extreme abdominal tenderness. I couldn’t eat and for days it came back up including rapid fluid loss. I had rapid heart rate from the sudden intense blood loss and severe anemia almost requiring a blood transfusion. They said my potassium dropped too low after bloodwork came back and they gave it to me through I.V. and it was a yellow liquid that burned. The stomach pain was unbearable and sleep wasn’t possible for months. The smell of rotting mushrooms and bleach to kill the bacteria would haunt me forever. I was in the bathroom with bloody runs and a throw up bag in front of my face nonstop while my body was trying to clear this to save my life. I started having accidents before I could make it to the bathroom and lost complete control over my body. I was so young and ashamed due to a lack of education available at the time.

Another week went by and I could barely eat rice with olive oil and salt or eat any probiotic foods to reintroduce them to balance the C. Diff out or try to heal my gut. I drank smoothies but the nausea heart pounding and bathroom trips made me feel like the pain would kill me or anemia would. Standing up caused my vision to go out and my heart would pound and flutter and a few steps made me need to sit down and breaks from the rapid malnutrition were needed. I had waves of hot flashes and chills and shivered nonstop. It felt like I was septic and going to die at any time. It was torture but I forced down probiotics and any probiotic food I could tolerate along with prebiotics.

Soon after, I was back in the hospital. I was readmitted and the test for C. Diff was normal and the bleeding and bathroom trips were still happening back to back. Nothing was changing.

A few months later, there was still bleeding and I finally had my first normal stool in months after thinking I would die before that happened. Pain, bloating, cramping, incontinence and accidents were happening on a regular basis at random and I was wearing diapers it was so bad. I was so humiliated and embarrassed this was now my life even after force feeding myself kefir, probiotics, and any foods I could keep down at all. I remember having to do my first colonoscopy prep and it felt like I was going to die all over again only because I was so sick and still anemic and very malnourished. I was freezing, nauseated, and had the worst headache of my life during the prep also due to losing more electrolytes even though they are added as a part of the prep. I didn’t add more because I didn’t know if I was allowed to or if it would alter the results. The pain and other symptoms were found to be Pancolitis and I needed to start taking sulfalsalazine. I had no money and was forced to work 2 jobs at my sickest. It was cruel. This level of pain went on through my first pregnancy and for years while having to try step up medications and it never got better. I worked while sick in fear of public bathrooms whether it was someone making me sick or me making someone else sick. I couldn’t manage what became lifelong Ulcerative Colitis due to lack of accessibility to better medications earlier on or life changing treatments.

So far, I am the only one I know of that has a chemo port but for I.V. infusions to manage autoimmune disease caused by appendectomy complications and C. Diff. Other people seemingly made full recoveries and had normal lives or they got so sick they didn’t make it and died. I was lucky for my partner’s support, family, and medical team. There may also have been people with recurring cases that got approved for intensive treatments like Fecal Microbiota Transplant and I want there to be a way for me to be approved too considering how restrictive my diet and lifestyle still is. I still live in fear of bathrooms, antibiotics, infections, and avoid all things that can contribute to any. My life became so small as a result of this. Getting pregnant months later scared me too because of the risks and possibility leaving a child behind if I ever needed antibiotics again during or after giving birth and I did. All of the work of everyone that wanted more for me left all of us disappointed that all I ever became was another statistic. Before C. Diff I already went through homelessness as a child, foster care, aging out with nothing, rebuilding and lost it all to C. Diff 2 years later at the age of 21. All I wanted was a normal happy healthy life following God and a happy marriage with children and habits like going to the gym. There is still so much I want to do for others. I was just too ashamed and exhausted to be honest and share this experience and how it’s still affecting me severely today.