I put off writing this for a very long time because it’s like ripping open an old, giant wound that never even healed. To my family and friends I’m the best person to ask about C. diff infection. But to me, I’m the worst person to ask about it because it completely destroyed my life. I’m just so extremely grateful that I lived when so many others never got the chance that I believe I have to share my story for those that can’t. So get comfortable, here it is.

In the fall of 2016, I was a 38 years old Corporate Travel Manager, a healthy and happy runner, animal lover, and baseball fan. I knew what C. diff was but I never thought I could get it. “It’s rare, that’s an old person in a nursing home type of disease, I can’t get that.” And yet, here I am – 2 battles with this monster later, 2 Fecal transplants, numerous hospital stays, a mountain of medical debt, a lifetime of medication and anxiety, and my home and my life as I knew and planned for – all gone.

I came down with a couple upper respiratory/strep throat illnesses back to back. I had been on antibiotics once a year for things like this my whole life. Usually prescribed a Z Pack  (zithromycin) or something like it every year. Never any side effects or problems from it and never any mention or recommendations from my old school doctor to take a probiotic with it. (I didn’t even know what a probiotic was back then!)

A couple weeks following the last dose of antibiotic ( Mid December)I started having some persistent intestinal symptoms. When they worsened through Christmas I knew I had to see the Dr. right away. At this appointment I saw my Physician’s Assistant, Nancy. She had been my PA for my entire adult life.  She was a younger, brilliant mom of 2 kids and in retrospect after hearing so many horror stories of patients going misdiagnosed or never tested for C. diff  at all, I believe she is one of the reasons I am alive today. I explained my symptoms, and knowing I had been on multiple rounds of antibiotics in the last couple months she sent me for a C. diff test that day. The next day she called me and told me it was positive. At that point, she advised me to begin taking Florastor (one of the only known probiotics that can not be killed by an antibiotic and can reduce the rate of C. diff recurrence) and started me on the first line of treatment at that time, Flagyl (Metronidazole). A couple days later, I was in the hospital. I was allergic to the Flagyl and even sicker from the severe intestinal symptoms of C. diff. As many C. diff patients are aware, the last place on earth you are wanted with severe C. diff is in the emergency room in the hospital. You are immediately put into Quarantine and Isolation and in come the nurses with the full body gowns, hoods and gloves. In the hospital I was then put on the next line of treatment(Vancomycin) and after 24 hours, I was sent home.

I was on Vancomycin for the next 3-4 months. Multiple doses, pulse/ tapers and the continued use of Florastor. As soon as I came off the vancomycin, a few days or a week later here it was again. This was severe refractory C. diff which occurs in 25% of C. diff patients. Between the infection and then post infectious IBS that followed once the infection was finally gone, I was out of work on temporary disability from January to July of 2017. My friends had even started a GoFundMe to help me out. Finally, by July of 2017 I had healed enough that I could go back to work, but that would be short lived.

By summer of 2018, my life had almost become normal again. I was back to running again and had completed my first comeback race in July (the Utica Boilermaker). I even had another race planned in late September. A couple weeks before the race though I had what ended up being a UTI. My PA and I went over my options, knowing that any antibiotic at all could cause C. diff but looking for safer options of Antibiotics. She advised me that with my history of severe refractory C. diff she thought the best route would be for me  to go see an infectious disease doctor to discuss treatment and she’d get me an appointment with one that afternoon. But I had to get to work. My boss was actually texting me while I was at the drs office telling me there was no one to come in to help her. So against my best judgment I told my PA that I didn’t have time to go to another appointment. I had to get to work asap and that’s when we chose to treat with Macrobid. This decision would change the course of my life.

It was 3 days into taking the Macrobid that we learned there is no “safer” antibiotic for me. 3 days into taking it I began to feel what I know is the beginning of C. diff infection. I called my doctor, was sent for a C. diff test and the next day got the dreaded result. It was positive and this battle would change my life forever. One call to My GI doctor and he immediately put me on Dificid (fidaxomicin) and scheduled my first fecal transplant for October 2nd. After being so sick for so long with my first bout, he knew this was the best option.

October 2nd came and I had my very first fecal transplant using the capsule method. My GI doctor and I were both hopeful. I remember him coming into the room beforehand and his exact words were ” You will do fabulous with this!” I had also read about the 95% cure rate ( as it was at the time). Patients woke up the next day feeling better and never looked back! Some were better in a week or 2. It was so promising! I was positive and hopeful and was ready for this to be over!

Each week following the transplant got a little bit better- for the first 3 weeks. Little by little my symptoms began to slow down. Until week 4. Week 4 I noticed I wasn’t getting any better and by week 5 I was going backwards, extremely sick again. From November to December I took multiple C. diff immunoassays and PCR tests, all negative. I was continuously told this was just Post Infectious IBS by my GI. My illness continued and worsened. I called his office, had several appointments with all of my doctors who listened and cared but had no resolution or way to help. But at his office,  I was ignored and scoffed at. Dismissed. “You have post infectious IBS, stop calling here” was the sentiment. But I KNEW what post infectious IBS was from my first bout and this was NOT that. This was a full blown C. diff infection. You can’t mistake it. By this point, I had lost 15 pounds and counting since my October 2nd Transplant. At the end of November I had not eaten for a week and by December 4th I could no longer hold down water, urinate or even stand up. My dad called 911.

Once in the hospital I finally tested positive for C. diff. I also learned from a seasoned veteran GI doctor that you can have enough C. diff in you to make you sick but it may NOT SHOW UP ON A  C. diff TEST!!!  All those weeks of brutal suffering, going untreated, and begging for my GI to listen to me had finally come to a head. I was then given liquid vancomycin and after a week at the hospital I was finally able to go home. I called my disgruntled GI’s office to tell them the news. (Something important to note: Even after I spent a week in the hospital testing positive for C. diff there was never any acknowledgement of error on their part by the dr or anyone else I came in contact with at my GI’s office. They were still completely void of any empathy, understanding or tiniest bit of compassion. I’m fighting for my life and they’re annoyed by it. I know this is common for us severe refractory C. diff patients and we feel so alone while we’re going through it. So please know -you’re not alone!)

Once my hospital prescription for vancomycin ended, the next week all of my severe symptoms returned. I called my GI and we went back and forth fighting about everything that had happened. To the point that my father came to my next appointment with me to talk to the doctor. I was just too tired to fight my GI and my body alone. Needless to say, my GI put me on another round of vancomycin and FINALLY scheduled my 2nd FMT for January 22nd. This time we would attempt a push enteroscopy FMT. The frozen then thawed donor material would go down my throat and the full length of my intestines while under anesthesia.

Following my 2nd transplant on January 22nd of 2018, I was unable to digest food for 7 months without severe side effects. If I ate anything at all, I was violently sick 2-3 hours later.  “Oh you have celiac disease now, you have sugar allergy now, it’s SIBO, it’s a dairy allergy. Try to drink kefir, eat Manuka honey, eat a Mediterranean diet…”

No, it wasn’t any of that and nothing I did helped. There was no allergy. It didn’t matter what I ate. But I knew this wasn’t C. diff. My infection was finally gone but this was a direct after effect of the transplant combined with trying to heal from months and months of deadly active intestinal infection. Back to the hospital multiple times for fluids, meds, procedures….another 15 pound weight loss. I just had to hold on. The infection was gone, I just had to endure these side effects and the healing process. This side effect (or any for that matter) no one warned me about. It was almost as if my body was rejecting this donor material. No one ever told me that this transplant could may make me violently sick for the next year or forever.  I was never told anything like this. No warning, no information, NOTHING. Just that I’d be cured and completely healed by it. As a matter of fact, to this point, no one had ever even said “hey, there’s a possibility that a transplant may not work for you just so you are aware.” Not in any support group, or doctors office or anywhere! I wish someone would have told me, “this will most likely be the only cure for the actual infection but it may also make you just as sick. JUST SO YOU ARE AWARE.” Again, something that I feel we need to advocate for- more information, more open and realistic conversations in the doctor’s office. Not just a pat on the head as they push you out of the office making you believe you’ll wake up healed after your transplant. Yes, I understand that most C. diff patients do feel better and are cured after their FMT. But some of us aren’t!!!! And we are completely alone and dumbfounded because we never thought it could happen!!! I believe this outcome and any potential after effects should at the very least be discussed before transplant. We are so desperate to be healed and saved that we would literally undergo any treatments at all but please at the very least tell us that there is a possibility that it may not work and it may make you just as sick!

From September of 2018 to July 2019 was the most brutal nightmare of my life. This heartless and hopeless stretch of time was one of the main reasons I feel I need to advocate now as much as I can for my fellow patients. Even if that means just sharing my story. This GI and his nonchalant attitude, lack of care and compassion… it all could have killed me. I know so many of us patients face this and it’s unacceptable!

Through my  C. diff nightmare there was one other person on this earth besides my family that I knew I could reach out to who understood all of this, Christian Lillis. Christian and the Peggy Lillis Foundation were the light I needed in the darkest moments of my life. At this volatile time he gave me more information and support than my own GI. Not to mention compassion and understanding. He directed me to online support, other Drs in my area, alternative treatments, clinical trials…. Essentially any information he thought could help me. The Peggy Lillis Foundation understood, they cared and they continued to pulled me through it.

Through my illness, I would pray daily asking God that if he would not end my suffering and heal me to please just take me. I felt like a prisoner in my body. It was so hard to live this way for so long. It was a battle. I couldn’t get better. Countless stool tests, sleepless nights laying on my bathroom floor, excruciating pain and brutal agony. Only my boyfriend and my immediate family understood this illness as they lived it with me. Taking me to the hospital and doctor appointments (GI doctor, colorectal doctor, nutritionist and my primary care) picking up supplies, medications and anything else I needed for over a year.

What made severe refractory C. diff even more cruel for me was the financial and emotional aspects. During this time of my life, unable to work for over a year, I lost everything I ever worked for. We lost our savings. Our dog became sick and we had no funds left to treat her illness. Then we lost her as well. Unable to continue to pay rent, utilities, copays and medications even with our GoFundMe, we lost our townhome. We even lost our deposit (after learning I had an infectious disease our Landlord took our deposit to industrially sanitize our townhouse when we moved out)and eventually even after hanging on all the way into 2020…I lost my career. Turns out that you have to be physically well enough to leave your home consistently to go to your job every day if you want to keep it. You can’t be completely housebound several days out of the week. Even if you work from home, you at least have to be well enough to sit at a computer as needed by your employer without multiple trips to the bathroom or excruciating colon spasms interrupting your day(s). Workplaces and employers aren’t accommodating or empathetic to infectious disease survivors. We’re unreliable, at the mercy of our bodies on a daily basis and they have a business to run. Calling in sick several times a week or all week isn’t conducive to running any business no matter how well you do your job.

In 2020 for the first time in my life I was then diagnosed with anxiety and PTSD on top of the intestinal and colorectal conditions I was left with from the infection and multiple transplants. Covid and the anxiety of catching another potentially deadly illness after just fighting for my life for over a year brought me to my absolute brink. Yet, even still-I prayed. I remained hopeful that I would overcome it all and my body and brain would continue to heal. I adopted the phrase “just keep going.” It was one that I kept telling myself throughout my years of illness and I repeated it to myself often throughout my day. (I still do.) As each year passed I still remained positive and hopeful that I’d heal. I knew I’d get better, it just takes time. I prayed I’d get better. I wanted to go back to my old, happy, fun, active life that allowed me to have a nice, safe, clean place to live, a great job that I could get up and go to every morning and go grocery shopping or for a run whenever I wanted to. I just needed to believe, stay positive and have faith. Just keep going.

Well, I am 45 years old now. I have no retirement, not one penny. I have no savings, no career and am currently fighting for approval of permanent disability. I’ve lost my health insurance and am now on Medicaid, living in my childhood home that my family owns and lets me live in. This disease is so brutal that without my family and Boyfriend to save me, C. diff would have also made me homeless. I’m so blessed to have a roof over my head. I just have to keep going.

Now, 2024, it’s been 5 years since my 2nd transplant. 5 years later I am no longer hoping or praying for healing. I know that isn’t coming now. Now, I just pray that I will be approved for permanent disability so I am no longer a financial burden to my family and Boyfriend. My anxiety and PTSD have become so overwhelming that I now need additional medications to treat them as well. For the first time in my life I also have high blood pressure. I worry every second that I am awake. Many days each week I am housebound with intestinal issues and on the few blessed days that I’m not, the thought of leaving the house to go to the Dr or grocery store with so many people and GERMS is absolutely crippling. My heart pounds out of my chest, I sweat and I feel like I can’t breathe. Being so susceptible now to illness, any germ can start this nightmare all over again. But still- I do my best, I try to just keep going.

Every single day for the last 5 years of my life these events have consumed me, so much so that it took me 5 years to muster up the courage to type all of this pain out. Who would care? Who would even read it? Why try to be an advocate?  One reason. I have been blessed with a gift….I SURVIVED. There is pain and sadness in grieving my old life that is gone and so much fear of what my future will be ……BUT despite all of this, I’m so grateful that I survived. Grateful that although this illness took everything else, I still have a life with my family to live, no matter how small or insignificant it may feel. I have also been given the gift of perspective. C. diff has taught me that my health and family are all I truly need. I survived. You have to know that you can survive too! Just keep going.

That leads me to the final piece of my story-a message to my fellow patients. If you are sick and suffering with C. diff and you are fortunate enough to actually recover please let my story be a lesson to you in the future. Your health comes first. It comes before ANY JOB. Never let your boss bully you or guilt you into skipping out on a Dr’s appointment that could have saved you from infectious disease or any other illness for that matter. I look back now and think what if I would had taken my PA’s advice and gone to the ID doctor to discuss treatments before I took the Macrobid, maybe my life would be different now. I could have gotten a new job but I can’t get another colon or another life! So I will say it again, your health comes FIRST no matter how irritated your boss becomes by it. You know your body better than anyone. If you have to stand up to your boss or your Dr. to do what’s best for you- DO IT!

Lastly, if you are sick and suffering with C. diff  I can’t promise you that everything will be ok and you will fully recover. I can only tell you that WHEN you survive it and the storm settles, you will be without a doubt the strongest person you know. Eventually, all that pain and suffering turns to strength. This fight of your life will give you the strength to overcome ANYTHING else and be the strength for others as well. And THAT will also make you the best advocate. Even if all you do is share your story, your voice can help someone through it! So until then, no matter what…JUST KEEP GOING. 💪🏽