My name is Megan and I live in Pennsylvania. I am 29, married and have three small children. I have struggled with Clostridium difficile (C. diff) for the past year before receiving a fecal transplant, which has successfully treated the condition up to this point. I want to share my story to help others who are battling C. diff because throughout the past year, I often felt frustrated, angry, scared and depressed along with being frequently sick. Most of all, I want others to know that they are not alone, they are not isolated and there are options to consider when the “standard” treatments don’t work.
So how did a healthy 29 year old woman get C. diff? Well, that’s a great question since we are not sure at what “point” I got C. diff, and it took nearly a year to figure out what caused it. My first indication that something wasn’t right was in mid-2012 when I was pregnant with my 3rd child I would often have entire days of vomiting and diarrhea. We just chalked it up to my not having a gallbladder (I still get attacks) and my being pregnant at the time.
On April 27th 2012, I started with the vomiting and diarrhea, however this time it was accompanied by a burning sensation. This persisted for two days and then stopped, so I just thought it was a stomach bug. Just after midnight on the fourth day, it started again but was very intense and the burning was extremely bad. That day I ended up delivering my 3rd child, two weeks early. He was healthy.
Within one month of his delivery, I started to have terrible burning and cramps after eating breakfast each day. Because the pain persisted, I began to keep a food diary to see if I was taking in to much lactose (up to that point I had been lactose intolerant), however after a few weeks it progressed to every meal or snack. I would not have any other issues with these symptoms.
Because of the burning sensations I was experiencing, I saw a GI doctor, who initially ordered an upper Endoscopy, which revealed nothing. Because the symptoms continued, I was tested for C. diff. The test was positive and I was started on flagyl. After only two weeks, I was told my strain of C. diff would not respond to the treatment and I was switched to vancomycin.
After three weeks of this new treatment, I was still getting sick. My doctor began a second round of vancomycin and encouraged me to take it every 4 hours, however I continued to get worse. While on my second round of treatment, I started to experience the bouts of vomiting and diarrhea closer together. At this point, my doctor told me she was out of solutions and suggested I consider a fecal transplant.
By this time I had been in my local ER on a 4-8 day cycle. Each time I was given IV fluids and pain meds, and I would cycle between bouts of diarrhea/vomiting to constipation, which meant that my digestive tract was shutting down and my body would stop processing the food I was taking in. Then it would reject it, hence the vomiting/diarrhea.
On my doctor’s recommendation, I began to research fecal transplant providers and costs and was thrilled to find out that 1) my insurance would cover it and 2) my hospital provided them. The hospital staff let me know I was a perfect candidate, and met with the infectious disease department to start the process. This is when I hit rock bottom and lost all of my faith in my hospital and its staff.
Upon meeting the ID doctor he told me that “only patients in their 80’s get fecal transplants”, and recommended several rounds of antibiotic treatments, which would cost approximately $1,000 for the co-pay alone. I refused, noting that I already had over $1,000 of co-pays that I owed, I could not afford any more. I insisted that if the hospital would not do a fecal transplant, then I would go elsewhere. During this conversation I also asked the doctor about disinfecting methods. He said that I only needed to clean my bathroom and kitchen, and suggested using Clorox wipes, which according to the CDC do not work since they DO NOT contain any bleach. I felt hopeless, since this “expert” did not seem knowledgeable about my condition. I felt lost, and believed that I was going to die of this as my grandmother did.
After that conversation, during a visit with my plastic surgeon, he encouraged me to go to GI and to talk with them. I did, and the doctor I spoke with scheduled me on the spot for my fecal transplant, giving me a date, time and instructions. He explained that some doctors feel only antibiotics can fix C. diff, but he had a different opinion. He did encourage me to continue antibiotics until my transplant, which I did until three days prior to the procedure.
The prep for the fecal transplant was uncomfortable, but not painful. It required me to take several rounds of laxatives so I ended up making lots of trips to the bathroom (at one point I was in the bathroom every 10 minutes for several hours). I started with major cramping/ burning and having to run to the bathroom after the final round of laxatives, and the pain continued until sixty minutes before my transplant was to start.
I was not nervous at any point because I knew I had to go through with it; I have to live for my children. The staff was very thorough, nice and respectful leading up to the procedure, introducing themselves to me and making sure that I remained covered up until they gave me the IV meds that put me to sleep. I felt very comfortable.
The next thing I knew is that I was back in a recovery room. I did not feel sick, and a nurse was there to answer questions and make sure I had what I needed. The doctor told me that I looked great – no signs of colitis, or diverticulosis – and I was released within 30 minutes.
So that is my story. As a result of this one year ordeal, I learned that my skin disease is what caused this. As a result of it, I frequently used a topical version of Clindamycin, which I can no longer use. Since developing C. diff, I now have to meet with 40 specialists who will be tasked with finding a solution to my skin disease and a treatment to put it into remission. If they cannot I will be sent to University of Penn.
My message to those going through C. diff infection is to not lose hope. If you are faithful, pray. It can be comforting. Fight for yourself. If you feel that getting a fecal transplant is your only option to be cured, then get one, even if you are embarrassed. It can save your life and it “could” prevent or stop colitis. If your hospital will not or does not provide transplants, then ask to be referred to one who will. I hope this has given you hope, perspective and a renewed strength to keep fighting.