The following is a guest post written by PLF volunteer Patricia Fisher.

I had to look back through my notebooks and files to determine when my C. diff journey began. The first mention I found was May 14, 2015, where I wrote, “still diarrhea. How long does it take this illness to go away? Will it recur?” On May 15, 2015, I wrote, “Stomach muscles hurt. How long does it take to recover from this illness? What are the chances of me getting colitis again?” I did get it again and again and again. I’ve lost count of the number of times, but I estimate at least 24 times over nine years. This is the abbreviated story of those nine years, and now my tenth year.

I think my C. diff was community-acquired; I don’t remember taking any antibiotics before the diarrhea started in 2015. I do remember going out to eat with my husband in the spring. I could see one of the cooks, and he looked like he was rushing back from somewhere and through his orders. I still don’t know if that has anything to do with me getting sick, but it’s enough to make me leery of restaurants. I was treated with vancomycin and had two more attacks and was hospitalized during the summer of that year. The hospitalization was not bad, and I was not put in isolation.

In August 2015 my primary care physician referred me to a gastroenterologist, who remained my gastroenterologist until the spring of 2024. During the years 2016 through 2022, I stayed on vancomycin one a day or one every three days for a great deal of the time. I would get an infection, be prescribed vancomycin, taper off it for a long period of time, go off it and within a month get another infection. Over and over. I can see it in my doctor’s notes: “12/22/21 continue vanco taper; 03/24/22, down to vanco 250mg daily; 12/06/22 continues to do well on low dose.”

However, my notes tell a different story. In March 2022, I wrote, “3 weeks—morning diarrhea. I took Imodium on days I had to go out in morning, and it lessened and shortened my diarrhea. I had to go to the bathroom about every hour until midnight.” On March 24, 2022, I wrote: “Worried about this because it limits what I can do, (standing, walking, carrying heavier things) and I worry about using so many Depends. And I worry about getting my hands washed thoroughly enough. And, how can I eat knowing I’ll have diarrhea later? And showering is a problem—poop comes out on washcloth when I’m washing/showering. My whole day revolves around when I eat and keeping diarrhea under control.”

Clearly, my doctor and I had a disconnect. On March 14, 2023, my doctor wrote, “Clinically cleared after prolonged tapering course of vancomycin; at high risk of relapsing even without antibiotic exposure; good candidate for IV antibody bezlotoxumab” (Zinplava). He also wrote on March 14, 2023, “I advised her to stop the intermittent vancomycin which was only 1 capsule every 3 days.” Sure enough, on March 29, 2023, I went to an urgent care and was prescribed 125 mg vancomycin and Keflex. Then on April 2, 2023, I was admitted to a hospital with 5 days of diarrhea. A sepsis alert was given as I was “very dry and weak appearing.” I remember I could not figure out how to use the telephone.

The Hospital Stay from Hell

This hospitalization, from April 2, 2023 to April 7, 2023, was truly a hospital stay from hell. C. diff was detected by PCR test, but not by EIA, so although the hospital had started vancomycin for the sepsis scare, they discontinued it because the toxin was not detected by the EIA test. Per their records this “most likely meant C. difficile colonization and not infection.” They also state, “Treatment of these patients is not recommended but isolation precautions are required.” They did not take isolation precautions. The doctor also erroneously states in his notes “vanco was discontinued when C. diff PCR and C. Diff toxins both returned negative. The tests recorded only the C. diff toxins (EIA) returned negative; the PCR was positive. I knew it was C. diff—I could tell by the smell and told them so.

I was so weak and my abdomen so sore I could not sit up in the bed by myself and certainly could not get to the bedside commode by myself. So, I had to continually call for help, which made me very unpopular. One night I was yelled at for five minutes by an attendant for not being able to wipe my own butt. I had a urine collection device put in my diaper and was told to urinate into the diaper— ‘don’t call them.’ They were not happy when I had to poop in the diaper, too. They recommended psychiatry follow-up and that I be discharged to a skilled nursing facility. I refused and chose a home health care agency.

I had nightmares about the hospital stay both during the stay and after I came home. At home, I recovered enough that I could walk and get to the bathroom by myself. But I sent a stool sample to my primary care physician when I was home from the hospital. It came back positive for C. diff. At this time, I got a message from my pharmacy telling me I had a prescription for Dificid (fidaxomicin) waiting for me. The prescription was from my hospital stay, where a doctor from the hospital had talked to my gastroenterologist. My gastroenterologist had suggested a test to prove I was positive for C. diff, then to use Dificid. The hospital doctor had written the prescription for Dificid. Perhaps it was an angel, and a credit card, making this prescription available to me at that time.

I say credit card because Dificid cost a $1,200 co-pay (after insurance). My gastroenterologist advised me to go back to vancomycin because I “could not afford” the co-pay. Telling me I “could not afford,” the “cost would likely be too high,” or “it’s unaffordable anyway” was a recurring theme when talking to my gastroenterologist about treatments. But I did pay for the Dificid, with a credit card, and did well on the medication, much to his dismay and my delight.

But Dificid did not stop the ‘antibiotic tapering, then stop, then infection again’ C.diff cycle. I soon ended up back on vancomycin after another infection. I worked with the home health agency as they guided me through physical therapy and occupational therapy. They tried to talk to my gastroenterologist, but he would never return their phone calls. I was discharged from the home health agency within months because they said I was the healthiest client they had and I did not need their services anymore. They were wonderful.

Searching for Options

During the rest of 2023, I researched other treatment options and found FMTs were being offered at a hospital (NRV) fifty minutes from me. I also found the Vowst treatment option. I made the earliest appointment I could get at the gastroenterology practice associated with the NRV hospital, which was October 24, 2023. In the meantime, my current gastroenterologist told me his prescription for one-time use of Zinplava had been denied by my insurance company due to a misunderstanding about how the drug was to be used. I don’t remember receiving a letter about this. However, he did not follow-up on it and the denial was not appealed. He also told me that fecal transplants had been curtailed since COVID but he would investigate whether a university hospital two hours from us had resumed the transplants. He did not seem to believe the NRV hospital did them since he could not find mention of it on their website. In June 2023, he told me he was talking to a Rebyota representative to facilitate insurance approval for my treatment. He told me it was likely to be expensive. Although I asked for progress reports, he was never successful in getting this treatment for me.

I got my records from my current gastroenterologist and went to my October 24, 2023 appointment at the NRV hospital gastroenterology practice. I saw the Physician’s Assistant (PA) who reviewed my records and took information to enroll me in the Vowst treatment program. Then I waited until January 2024 when I got the Vowst ‘Welcome Kit’ with the magnesium citrate laxative, and separately, the Vowst capsules from a specialty pharmacy mailed to my house. I did get the treatment, at no out-of-pocket cost to me, because of Vowst’s Co-Pay Assistance Program. I read and re-read the instructions and as far as I know followed the treatment plan as prescribed. However, I had no contact with the NRV PA during this time. That was in the first week of January, 2024.

About the end of February 2024 I started having cramping, hot flashes, and chills. I wrote “What is happening to me? It is so hard to do anything in the morning.” I called the NRV PA’s office and my old gastroenterologist’s (Dr. W’s) office to ask for help. On Friday, March 1, 2024, I left the following message with Dr. W’s office. I know this is the message, because I wrote it down so I would know what to say and would not forget anything. I told them: “Please please help me. I am finished with my round of Vowst. And I am finished with [NRV PA’s office]. They have turned me over to you as my one and only gastroenterologist. They said you would have to prescribe my vancomycin for me. Last week someone called from your office and said my stool sample showed I had C. diff again and Dr. W prescribed vancomycin, four a day. Now I need for him to send in the prescription for me. I am having diarrhea again and can only drink broth. How am I going to live through the weekend with diarrhea and no food? I don’t understand why I’m not getting the prescription for vancomycin. This is what Dr. W has always done to treat me for C. diff.”

Drama! I don’t remember exactly what happened after that message. I do remember they did not call back right away, but I did eventually get the vancomycin (and, actually, to this day have a week’s supply in my closet—a superstitious, crazy thing).

Now I was back on a long taper of vancomycin with my original gastroenterologist. But, in April 2024, I made an appointment with a gastroenterology practice associated with a second large hospital in my city. I again met with a PA. I told him I wanted an FMT. He was surprised that I had been on vancomycin, with only Dificid once, for so many years. He told me to taper off vancomycin for thirty days, stop, then wait 10 days, and have a stool test. If I was C. diff free at that point, then we could talk about getting an FMT. I knew that once I stopped the vanco, within ten days I would have a C. diff infection. So, I did not stop the vanco, but continued with a busy summer where I was learning Transcendental Meditation and doing other things.

But I knew things had to change. So, in July 2024 I went back to my ‘new’ gastroenterology practice. This time I saw another PA and the doctor supervising her. They told me they could not help me until I stopped taking the vancomycin. I told them I knew if I stopped taking the vancomycin (I was taking one 250 mg capsule every three days), I would have an infection within a week. They sent me home with a “top hat” and a lab order for a stool test. Before stopping the vancomycin, I made sure I had things in order at home and in my life because I knew an infection was coming. On July 23, 2024, I stopped the vancomycin. On July 28, 2024, I started diarrhea. On July 29, 2024, I went to the emergency room, tested positive for C. diff. This time I was prescribed Dificid and the hospital pharmacy filled the prescription. They called and told me with the high co-pay of my insurance, I was eligible for the MerckHelps Patient Assistance Program for prescription medicines. The Dificid was sent to me overnight via air and at no cost to me. Dificid was prescribed because it did not kill as many of the good bacteria in the gut microbiome as vancomycin—it targeted the C. diff bacteria and not all bacteria.

I finished the course of Dificid on August 8, 2024. On August 16, 2024, I went back to the emergency room and tested positive for C. diff. I had not gone ten days without an infection. I was hospitalized and started on vancomycin. My gastroenterologist’s plan was to have me go ten days without an infection or an antibiotic, then do the FMT. The hospital’s gastroenterologists’ plans were to start me on vancomycin, take me off it for two days, then do the FMT. I was confused as to which doctor to believe. However, since the hospital doctors were offering the FMT, I was not going to say ‘no.’ And I knew I would never make it ten days without an infection. I had the FMT on August 21, 2024.

Post-FMT

I remember the day after the FMT having a bowel movement where the stool looked ‘normal,’ not like mine. That did not last long as I continued to have some diarrhea. I asked what to expect now and the doctors just danced around the question—I don’t think they knew what to expect either.

During this hospital stay (at a different hospital than the one in 2023), I was in isolation. Everyone, staff and visitors, had to use gowns and gloves. The hospital staff was professional and friendly except for one nurse; he was extremely condescending to me. When my attractive thirty-some year-old niece came to visit me, he got her alone and asked her how my housecleaning was. My niece and I puzzled over why he would ask this. Then it came to me: C. diff infections can be transmitted through the lack of proper sanitation. He thought my lack of good housecleaning caused my recurrent C. diff. He clearly looked down on me. When the nurse asked about my housecleaning, my niece told him, “See her manicure? She keeps her house like she keeps her nails!” (I keep my nails manicured in a French manicure).

I came home from the hospital on Thursday, August 22, 2024. I had minimal diarrhea on Friday and Saturday. By Sunday, August 25, the diarrhea was back. I was afraid to eat and was not going to take another antibiotic. So, I sat in my den wearing only a tee-shirt and a Depends and running to and from the bathroom. I kept asking the PA and doctor “when is the diarrhea going to stop?” but no one could tell me. I wondered, is it normal for an FMT to take this long to work?

However, the wonderful PA I was working with now decided we would try to do Vowst again. She said, ‘we hit the C. diff with the FMT, now we follow it up with the Vowst treatment.’ The only thing was that to qualify for the Vowst Co-pay Assistance Program, I needed to have just come off a course of antibiotic treatment. And neither the PA nor I wanted me to take an antibiotic after just having the FMT.

But again, the angels were looking after me—in a fashion. On September 19, 2024, thirty days after the FMT, I tested positive again for C. diff. This time Dificid was prescribed and overnighted using the MerckHelps Patient Assistance Program. The PA worked with my insurance company to get an approval for the Vowst treatment. During the process she had to be out of town, but she gave me her personal cell phone number to call if there were any complications in getting the insurance approval. It was approved, valid through December 31, 2024. Since I was now on a course of Dificid with a long taper, I qualified and was approved for the Vowst Co-pay Assistance Program. I received the treatment at no cost to me.

The PA I worked with now went over the instructions for Vowst with me in detail. We worked out the dates, day of week, and time of day of each step. Also discussed was how to best store the Vowst capsules in the refrigerator until they were ready for use. There were some issues in using the magnesium citrate laxative to flush out any remaining antibiotics. I discussed this with the PA and I ended up using it over two days. Then when it came time in the morning to start the Vowst capsules on an empty stomach, I automatically reached for an Ensure supplement drink that I use every morning to take my pills. I drank it! Then, a red light started flashing—I needed an empty stomach! Stop! I put the Vowst capsules back and messaged the PA. The next morning the Ensure bottle was turned upside down with an X on it. I started my three-day course of four Vowst capsules on an empty stomach as prescribed.

During my time on Dificid before my last Vowst treatment, I remember using the time knowing the antibiotic was working and I was diarrhea free to do the things I had put off doing, especially things with my husband and getting ready for 2025. I was ready for a new infection after the Vowst treatment by planning how to end my life.

That has not happened and I am thankful. When the Vowst treatment ended I weighed 86 pounds, 16 pounds down from the 102 pounds I weighed in August. I was afraid to eat for fear of bringing back another infection (I still am afraid to a good extent). My husband and I met with a dietitian. She told me to add in new foods, a little each day. My loving husband has worked to make sure I continue eating. He continues to make special meals for me every day. If I don’t eat everything on my plate, he wants to know if he made something I didn’t like, so he can fix it. He reminds me to eat lunch and snacks. He sets my breakfast food and dishes out for me at night. With his help, I am now back to 102 lbs. A perfect weight, since I am only 5 feet tall. He still stays on the look-out for foods he thinks I will like. I could not have done this without him.

Also, I found a patient assistance program by Abbott Nutrition, the makers of Ensure supplement drinks. My PA helped me qualify for this program by writing me a prescription for Ensure Plus and using the ICD-10 Codes for underweight and unintentional abnormal weight loss. In October 2024, I qualified for twelve cases (24, 8 oz. bottles per case) of the drinks. The supplements aided me in gaining weight. These are expensive supplements, especially when using three to four bottles per day. And, at three to four bottles per day the cases lasted for only 72 to 96 days. But it helped immensely.

I still have issues with loose BMs—I have to stay near the bathroom in the mornings. I’ve had some issues with colitis since my Vowst treatment, but nothing serious. I wrote my old gastroenterologist a letter explaining the Vowst and the MerckHelps programs to him. I called it a “friendly letter” and included a print-out from the Vowst website. I told him the treatments and results I’d had since I saw him. I gave him “Best Wishes.”

Life After C. diff

I found the Peggy Lillis Foundation website and became a Peer Support Volunteer for them. I’ve talked with people with C. diff by phone, e-mail, and text. It was scary at first, but I feel better after I do it.

I’ve become more involved with my family and even had a family gathering at my house—a big step for me. For the past nine months, I’ve done yoga every morning. Since July 2024, I have been doing Transcendental Meditation twice a day for 20 minutes each. My therapist tells me she is proud of me. I know I have done positive things in the past year that I never thought I would do.

The big thing happening in my life now is I am considering having an operation for a rectal prolapse. The concern for me is the surgeon administers two antibiotics the day before surgery and two antibiotics the day of surgery. Both days there is a dose of Flagyl (metronidazole). This scares me a great deal as I’m afraid it will cause a recurrence of C. diff. The surgeon says she has never had this happen in her practice. I have contacted Peggy Lillis Foundation for advice on how to approach this. I would not be surprised if my recurrent C. diff played a role in creating my rectal prolapse. I know it did not do any favors for my colon.

I pray to God every day, “Please keep the C. diff away totally and completely, forever and ever.” This is my story so far. I hope that it can help someone see how C. diff disrupts a regular life, and that it shows some of the heroes who deal with it.