August 7th , 2010, will forever be a day in my life that I will never forget. This was the first day that would start over a decade-long battle with a bacterial infection that I had never heard of. The day started off like a normal summer day. I was enjoying warm weather and hanging by a pool, gearing up for my upcoming school year. It took a swift turn in the matter of moments where I was projectile vomiting blood and having constant diarrhea. I went to the local ED and they triaged me in the ED bathroom because of how sick I was. I was later released with Cipro and diagnosed with food poisoning. I was sent home and the vomiting and diarrhea persisted.
I returned to my primary doctor, Dr. L, for a follow up appointment. The nurse practitioner was shocked to find out that I had lost 12 lbs in 3 days and immediately sent me back to the hospital. I returned to the ED and was admitted. There was no diagnosis however, I was given Cipro and then Flagyl. Stool samples were taken, endless blood tests, infectious disease blood draws, administering of pain medications, Zofran, Reglan, and anything else that would stop the vomiting and diarrhea. The hospital released me at the end of the week and told me to keep taking the Cipro.
The vomiting stopped, but not the diarrhea. I would go up to about 40 times a day, only going 20 times a day was a good day for me. The cramping was intense, I couldn’t stand up. I couldn’t eat anything without being near a bathroom. I am a schoolteacher, and this made me terrified of teaching during the school year. I couldn’t predict the intense pain or when I had to run to the bathroom. I was only 30 years old, healthy, with no pre-existing conditions. What was happening to me?
It was about a month later, I was at a different hospital in the ED, when I got a call from the GI doctor’s office. They said, “we know what is wrong, you have C. diff.” I had no idea what C. diff was. I had never heard of it. I felt like there was an end to this pain and suffering. Little did I know, it was just the beginning. Dr. G from the GI office was assigned to my case when I was admitted. She was young, friendly, kind, and had a good bedside manner. She prescribed Flagyl for a ten-day course and said I would be good. I happily took the pills 3 times a day. Days went by and I would only go to the bathroom ten times a day. I had no appetite, no energy, and I just withdrew from everyone and everything. I wanted to just lay in bed and cry. At this point, I had lost 40 pounds and my blood work showed that I was malnourished. This would continue for over a year. And did I mention I also got thrush in my throat?
After my 10 days of treatment, 5 days went by and the pain, the diarrhea, and the discomfort all came rushing back. Every bone in my body hurt. I had a fever and I felt like I was dying. I called the office and they prescribed 10 more days of Flagyl. Don’t worry, they say, you will be fine. This continues 4-5 more times, 4-5 more times of taking Flagyl and then recurring with C. diff. The doctor never ordered more stool tests, just prescribed the medication every time. After 6 months of still testing positive, she says “I think you need to go to Dr. G with Infectious Disease at the hospital.” She also said, “please tell him I am sorry.” She felt bad that she couldn’t get the C. diff to stop and needed to refer me to someone else to help.
I continued to relapse with C. diff, but now my entire digestive tract feels destroyed by these bacteria. Now I was going to the bathroom 10-15 times every day. I was in pain every day. I will sporadically get sick to the point where I get hospitalized. The diagnosis is always post-infectious colitis. With Dr. G, I take rounds on pancreatic enzymes and bile binders to help absorb nutrients. I can’t gain weight because I am not absorbing nutrients and he considered having me get a port for nutrients. Again, a completely healthy 30-year-old who can’t eat or exercise and can’t have a normal life because C. diff has destroyed my body. He puts me on vancomycin, which is the strongest antibiotic. I take it 4 times a day for 10 days. I repeated this again but the C. diff returned. I then started a 6-month taper of vancomycin. I was on antibiotics for nearly a full year after being diagnosed. At this point, I was referred to Dr. D, a GI doctor, who prescribed VSL # 3, a high dose probiotic to help me rebuild my gut flora. Dr. D basically tells me that I will eventually die of C. diff. I believe the quote was, “One day when you get cancer, C. diff will come back and could kill you”. That was the last day I went to Dr. D’s office.
During this time, I had numerous stool sample tests, blood tests, CAT scans, small bowel CAT scan, colonoscopies, endoscopies, hospitalizations, insurance denying claims because it wasn’t medically necessary. My favorite was when an insurance representative told me that my probiotic would no longer be covered, but there was another treatment that was FREE. It is called MORPHINE.
After all the tests and hospital stays, all of it coming back diagnosed as Post-Infectious Colitis and Chronic Fatigue Syndrome, Dr. G told me about the fecal transplant that was being approved by the FDA and said this would be the course of treatment when my C. diff returned. The taper of vancomycin stopped the C. diff tests coming back as positive but my insides were destroyed. I could no longer live life like a normal person. I didn’t enjoy eating food because it all made me sick. I ate because I had to. I was constantly in pain and/or tired. All the while, I worked as a teacher and tried to maintain as much of a normal life as possible. I was tired of complaining and felt bad for my friends and family who were there to see me suffer.
I was referred to another GI doctor, Dr. S. She performed various stool tests, cat scans, scopes, etc. My last day with her was when she said, “maybe you have cancer?” How do you say that to someone without proof?
I felt like maybe my C. diff would be gone since I hadn’t had a positive test. But I still suffered from pain, discomfort, and mucus covered stool. A friend of mine gave me the name of another GI doctor, Dr. Ravinder Dhillon. I waited 6 months to see him. Why this doctor? He performed fecal transplants. They were finally considered treatment for recurrent C. diff infections. That is what I have, maybe this will finally end for me. Under his care, I had been diagnosed with post infectious colitis IBS-D. So, basically C. diff destroyed my digestive tract. I don’t absorb food like most people. I did a capsule endoscopy and my tract looks “good”, but I digest food very quickly. He was unable to do a fecal transplant because I hadn’t had a positive test. So, I am under his care and have tried various IBS medicines, which put me in the hospital.
My first positive C. diff came back in 2019 right before my wedding after suffering from a sinus infection that would not go away. I failed to mention, during this time, I can’t take any antibiotics because C. diff loves them and will return immediately. My test was odd because it was inconclusive, so I took vanco anyway. I lost weight and felt sick, which I am used to, but I eventually got better. He has performed endoscopies and colonoscopies- only showing gastritis, but nothing else.
I continued to see Dr. Dhillon every 3 months or 6 months. Then Covid hits and we have to meet over telemedicine. He advised me not to go to the hospital, to stay away. I pray that I don’t have to go.
In May of 2021, I was ending my school year and I was starting to feel sick. When this happens, I generally stop eating because it will help me go to the bathroom less. I waited until my school year was over and I went to my primary care doctor. She sends me for an ultrasound with an urgent read. She thought it could be my gallbladder. I waited 3 days and got the quickest appointment possible. Later that day, I went to the ED. I called Dr. Dhillon because something felt wrong. I could tell something was different. I got another CT scan and he said I don’t have to drink the contrast, for which I was relieved. That makes me so sick on top of my normal amount of sickness.
When the results returned, I was shocked and so was everyone else. I have intussusception of the small intestine, in my jejunum to be precise. The same place where I had C. diff. Most people get it only in their large intestine, not me, no way. I like a challenge. I got admitted to the hospital and had emergency surgery on June 13, 2021. If you are going to have surgery, do it on a Sunday because it is rather quiet. Dr. Ruggles was the surgeon who was one of the most kind and caring doctors I have ever met. She had to run my bowel twice and did not find the intussusception. She didn’t have to resect my bowel. Her theory, since I go to bathroom so many times a day, is that my lymph nodes were inflamed and pushed into my jejunum causing the telescoping. She said dehydration can exacerbate the situation. I pretty much live being dehydrated. She warns me this can happen again and I need to be aware of how it felt and to return immediately if the pain returns. Dr. Dhillon is also involved with my care and was floored that this happened to me.
I got through the summer and most of the fall. November 3rd, I got nauseous, dizzy, and got a similar pain as prior to surgery in the summer. I called Dr. Ruggles and got an appointment for the following week. She asks insurance for a CAT Scan. My insurance takes a full week to approve and didn’t approve because they needed more information. Remind you, I just had surgery a few months ago. I got the approval and my pain worsened. But I couldn’t get a CAT scan appointment until December 1st. I didn’t make it and I ended up driving myself to the ED following work. I can’t eat anything without having diarrhea, pain, and nausea. I got admitted to the hospital and diagnosed with enteritis, small intestine inflammation. Same place the C. diff destroyed. While in the hospital, the hospitalist gave me 3 different antibiotics because my white blood cell jumped. I explained that I can’t take it because of recurrent C. diff. They don’t listen and I take them. Dr. Dhillon came and removed the order for antibiotics, thank goodness. I got released from the hospital. I was so close to Thanksgiving break. I could finally relax and recover from “enteritis”.
Nov. 26th, Happy Thanksgiving. Later that day, we were going to my in-laws to celebrate. I was excited, however, within moments of being awake my stomach felt off. I took a few bites of toast and had to run to the bathroom. The number of fluids and feces that leave my body seemed impossible. Not to be gross, but if you have ever seen C. diff or had it you know that the amount of fluid that your body loses is incredible. Like where did it all come from?? At this point, I don’t think it is C. diff. I am used to going to the bathroom like this, but it did feel different. As the day goes on, my body starts to ache. My bones hurt, I have chills, my stomach is loud, gurgling, and it sounds very angry. As the day goes on, I can’t really eat. We go to our in-laws, and I eat light food and go to the bathroom about 5 times at their house. We get home and the flood gates open. It is an all out war on my intestines. I can’t make it to the bathroom. I am sweating, slumped over in pain, going to the bathroom every 15 minutes. It is 5:30 in the morning and I wake up my husband. Something felt terribly wrong. I mindfully breathed as my husband raced us back to the hospital. I prayed I could make it.
We arrived at the ER and I must do a CAT scan AGAIN. A week later, I must drink the contrast again. I am now throwing up, having diarrhea, in pain, my pulse rate is up, and I am connected to a heart monitor. My results come back, I have C. diff. They tell me to get comfortable, I am not going home. Now everyone in my room must wear gowns, gloves, and must be uncomfortable to stay with me. I must go to the bathroom in a portable toilet, so I don’t infect other people.
The pain of having C. diff is unexplainable. It isn’t like a normal stomach ache or pain. It is this intense feeling. There is no holding anything back. When your intestines tell you to go, you go. Even if you aren’t near a bathroom. The color is bright green. It feels like there is an alien in your body. I don’t see Dr. Dhillon because he isn’t on call but I see someone else. They explain that I am a candidate for a fecal transplant. They can’t understand why I haven’t had one yet. I explain my story again and again. Every nurse and doctor said you need a fecal transplant.
I got released from the hospital and have a telemedicine appointment with Dr. Dhillon. He says it is time for me to have the FMT. I have the positive test and I can now get the procedure. This procedure is supposed to stop recurrent C. diff infections. I have had C. diff about 14 times over the course of 11 years. Many doctors, hospitals, tests, pain, visits to the bathroom, 14 times I have suffered through taking awful medicine and yet it returns.
I felt like the end was in sight. I cry when I hear the words Fecal Transplant. My life could forever be changed. Maybe C. diff won’t kill me one day like the GI doctor explained. Dr. Dhillon assured me that this procedure is effective in treating what I have. His office handled the paperwork with insurance. I specifically asked about insurance coverage and he explained that I have had enough recurrent C. diff infections for the treatment. I was scheduled for Dec. 7th. Later it was moved to Dec. 10th.
Not that this matters, but for me to miss a day or two of work, I must make sub plans. I don’t leave “busy work” for my students, I have them doing science and things that they would have done with me. I make plans for Dec.9th and Dec. 10th. Why also Dec. 9th? I am not allowed to eat anything the day before and must do the prep for a colonoscopy.
Here is where the insurance company has continued to destroy my quality of life. I feel like they are holding my health hostage. Remember back when I said I had to wait for the CAT Scan approval- thanks the insurance company, that was on you, and I ended up in the hospital. Now, the insurance company drags their feet to approve the procedure. Day by day, I am waiting to hear that I can finally get the treatment to make me better. Thursday, I am not eating any solid food and just drinking fluids. I am home, hopeful that I will hear that my procedure is approved. I must start drinking the prep at 8 pm. I got a call that they didn’t approve the procedure yet. My heart dropped and my procedure was canceled. The plans I made for school are now useless. I decide to go to school. Through the day, the insurance company still hasn’t approved or denied. My doctor rescheduled for Tuesday, Dec. 14th. By 4 pm on Dec. 10th, the stool was paid for by the insurance company so the GI doctor was hopeful that the procedure would be approved.
Monday, Dec. 13th I am at school. All my sub plans are now set for Tuesday and Wednesday. I am drinking fluids again. I got a call from my doctor stating that the insurance company denied the claim. They didn’t have enough from the doctor to support why I needed the FMT. I am speechless. What else do I have to do for the insurance company? Do you know what it feels like to be afraid to open your claims? I am terrified of my claims being denied because they aren’t medically necessary. According to the insurance company, I need to fail at three rounds of antibiotics. Nailed it. I need a positive test- nailed that, too. Now I wait for my doctor to appeal. the insurance company has been pointing their finger at my doctor’s office saying it is their fault because of how the claim was filed. All along they knew they would deny the claim and did not say this to the doctor. They left me hanging day by day and hour by hour, not eating and just drinking clear fluids. They should be ashamed of themselves.
No one applies for a fecal transplant who doesn’t need it. Anyone who needs a fecal transplant would require it immediately. It isn’t like an ACL tear or another type of surgery. C. diff depletes your body of nutrients, water, and energy. It is slowly killing you. I suppose I am young, that is in my favor. Same thing caused the original doctor to not worry too much when C. diff returned. “Oh you are only 30, don’t worry.” So, then I just waited. Iwa off antibiotics and just waited for C. diff to return and to go back to the hospital. I appreciated the insurance company for taking my case so seriously and really attempting to look at my case. If they had looked at my case and even looked at my past claims, they would see that C. diff has destroyed my life. Maybe start listening to doctors who take the time to meet with patients and who know a patient’s file. Dr. Dhillon specializes in GI health, don’t they think he would know better than their staff doctor who has never met me, but was quick to deny my procedure? Instead, you are viewing me as a stack of papers that explains my case. I am just a number to the insurance company and nothing more.
I sent all of this in a letter to the insurance company and I had to file a formal complaint to have the FMT approved. On Dec. 15th, the insurance company was forced to speak directly with my doctor and the FMT was approved. On Dec. 17th, 2021, I received the FMT. I am still in the early stages of recovering. I have not had another recurrent C. diff infection since Dec. 17th and hoping that this will be the answer. My story is still not over, but I am hopeful.
11 YEARS OF RECURRENT C DIFF
At the start of 2018 I was diagnosed with C. diff. I never really heard much about C. diff outside of people acquiring it in a hospital setting or people of advanced age contracting it. Oh, was I wrong. After being sick for about 8 weeks with w…