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C. diff Stories
Alisa PDF Print E-mail

In April of 2005, I entered the hospital as an extremely healthy woman in my late thirties, pregnant with my second son. I left the hospital 80 days later--minus my colon--after 21 days on life alisasupport, five surgeries, five weeks in the ICU, and one month in the Sub-ICU, all as a result of an antibiotic-related infection of Clostridium difficile.

In that time, I actually had two events of C.diff. I entered the hospital while pregnant because I began bleeding at 31 weeks gestation. My water broke, I was put on complete bed rest in the hospital, and was given protocol antibiotics, Keflex and Erythromycin, to keep the baby from getting an infection. The goal was to keep the baby inside me as long as possible before going through with an emergency C-section. After three days on bed rest, I developed painful diarrhea. I complained to my caretakers, but it took several days before I was finally diagnosed with C. diff. After ten days on a Vancomycin treatment, a stool sample showed that I no longer had C.diff. I remained on bed rest for three weeks until I began bleeding again. I then gave birth to my son Jamie via C-section at 34 weeks gestation. He went to the NICU where doctors discovered that he had a pneumothorax. He was consequently given a chest tube, and was also put on a ventilator for some time. Fortunately, he was able to go home after three weeks in the NICU. I, however, was not: I was still in the ICU fighting for my life.

Last Updated on Friday, 21 November 2014 15:14
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Molly PDF Print E-mail

(as told by her mother, Lindsay)
Molly

I am a first time mom to a beautiful, 5 month old, baby girl, Molly. At the end of August, she was diagnosed with C. diff after a week and a half of constant diarrhea. Her pediatrician at that time told me some babies just have bowel movements after every feeding. My baby was going every hour! After one sick visit and frequent calls to the pediatrician's office, we were advised to change her formula to soy. I brought a diaper with me to the office, but it was not tested for a possible infection. I was told over and over again it was either a virus or a reaction to her formula. Two weeks prior to this, I had stopped nursing, so formula in general was new to Molly's digestive system. I listened to the pediatrician and changed her to soy formula, but the diarrhea continued with the same intensity.

The clock continued to tick and every day she seemed a little worse. I noticed a gradual decline in Molly's overall demeanor. She was quiet, stopped babbling/cooing, didn't smile as often, and was not blowing her silly bubbles. She is a strong girl, so she was not overly fussy and never developed a fever. To others, she may have appeared fine. In my gut I knew something was wrong. Finally my pediatrician suggested we try to see a GI, but I was told that it was not an emergency. Disregarding my pediatrician's lack of urgency, I called a GI that day and was able to have Molly seen that afternoon. We had the test results back with a positive for C. diff the next day.

Molly was treated with Flagyl for 10 days. She responded immediately! We were ecstatic! Two weeks later, the C. diff returned. I will never forget that moment. I walked into her nursery in the middle of the night and I could smell it. My heart sank. As a new mom, I had never experienced this type of overwhelming helplessness. Why could I not fix this? I told my husband at 2am with absolute certainty that it was back. He laughed it off and said I was crazy. I knew and unfortunately, I was right. She again had C. diff.

We started the second course of Flagyl the next day. Molly again responded quickly to the antibiotics. She has been off the medication for 2 weeks. I am constantly sick with worry that it will come back again. When will I stop being paranoid? I bleach and wash everything she comes into contact with, but it makes me insane that I cannot see the spores; where they may be hiding in our home. Does she still have it? Her GI will not retest her unless she displays symptoms. We have started a probiotic in hopes that it will help a reoccurrence. Molly is the sweetest and happiest baby. She should not have to go through this this young.

We have since changed our pediatrician. We are now seeing one with more of an understanding of the infection and the rate of reoccurrence. He feels strongly that Molly developed C. diff as a result of Clindamycin transferring through my breast milk. I was prescribed the antibiotic a few days after I delivered her due to an infection I developed around my episiotomy. My obgyn assured me I could continue to nurse and Molly would be fine. Had I known the potential risks of taking an antibiotic while breastfeeding, I would have stopped to protect her.

I am eager to educate others about this infection and how antibiotic use plays a huge role in its development. Nursing mothers should never rely on their physician's word that an antibiotic is safe without doing their own research. Today, Molly is laughing and smiling, so my family is able to take a deep breath and enjoy our little fighter!

Please help PLF to continue to raise awareness of C. diff by donating today.

Last Updated on Saturday, 01 November 2014 07:45
 
Trish P. PDF Print E-mail

KansasTrish Pooley

I developed Clostridium difficile in response to being given two antibiotics (known to often induce C. diff) in rapid succession. Having had C. diff before, I knew immediately what was happening, but not a single doctor I asked to test for this infection did--not even the Gastroenterologist who was following me for other unidentified problems. When I had a colonoscopy during this siege, the characteristic raised, yellow C. diff plaques were easily visible to me on the screen. My doctor dismissed them as "bad prep," stating that the particles were "food debris." I knew this was incorrect; I had been without food and water for several days.

I then presented myself several times to the hospital Emergency Room with a severely elevated white blood cell count. During my last visit I asked to be seen by a doctor instead of a physician's assistant, but was told that my symptoms did not warrant the time of a physician. After twelve hours, I was discharged. I called a cab to return home because I was too weak to drive. Once home, I contacted my Internist--who was on call--at 2:00 AM, and insisted that she order a direct admission to the hospital. She asked, "Why would I do this?" I told her that I knew I had C. diff, wanted a consult with my Infectious Disease doctor, and would most likely die if this infection wasn't diagnosed and treated. She secured an admission for me with a resulting diagnosis of C. diff by noon the next day.

What I could not have anticipated was that as an immunosuppressed kidney transplant patient and having C. diff undiagnosed for four months, I would go on to develop Small Intestinal Bacterial Overgrowth (SIBO). I lost 41 pounds, and was suffering from chronic diarrhea, malabsorption, chronic dehydration, and cachexia. On top of that, all of these symptoms were putting my transplant at risk. I was told by every doctor that I had seen in the Midwest--including the University of Kansas Medical Center, St. Luke's Hospital (my transplant center), the Cleveland Clinic, and the Mayo Clinic--that they had nothing left to offer me. I had not been diagnosed with SIBO, or even malabsorption. I was told that my death was imminent. They said, "Let us put you in Hospice." I said, "No."

In my own research, I found the United States' leading physician researcher in SIBO, presented my case to him directly, and was given an appointment in a few short weeks. I flew out to LA to meet him. We found that the SIBO had caused intestinal failure. I live now, and for the rest of my life, on Total Parenteral Nutrition (TPN) to maintain my life. This involves the use of a central line through which I infuse sixteen to eighteen hours of IV hydration and nutrition every day. This costs Medicare around $5,000 per month, not to mention the impact of this on my lifestyle. Only about 15,000 people in the United States live on outpatient TPN. It is one of the highest risk treatment modalities known to medicine, with a high rate of central line infections.

My intestinal failure cannot be reversed since I lack an Ileocecal valve from a previous surgery gone wrong, am immunosuppressed, and have so many abdominal anomalies from surgeries. It just isn't possible to correct what the C. diff caused.

This should never happen to anyone else. Medical professionals know a great deal about containing C. diff in hospital environments. They just don't follow through with this knowledge, and don't use proper cleansers, scrupulous hand hygiene, and proper gowning. At the time I was diagnosed with C. diff, it took five hours for me to be transferred to a "no contact" room. During this time, an older lady, who had just finished foot surgery, shared the room with me. I told the nurses to move one of us. They didn't. This older woman went on to develop C. diff because she was not isolated from me, or simply even told to be aware of possible symptoms upon discharge.

The nurse taking care of me was pregnant. I told her to replace herself so she wouldn't get infected, too. Doctors and nurses came and went from my room, never putting on booties. So, C. diff spores were consequently tracked throughout the hospital. These spores can be cultured on surfaces for up to 40 days after an infected patient has been in an Emergency Room bay or a hospital room. And we wonder why this infection is so rampant?

I am alive and eager to use my voice to educate other patients, doctors, and the media about how serious C. diff can be, and what far-reaching consequences it can have. I got lucky. I didn't die. Doctors tell me that I'm "hard to kill."

 

Please help PLMF to continue to raise awareness of C. diff by donating today.

Last Updated on Saturday, 09 August 2014 14:20
 
Carol S. PDF Print E-mail

CarolSVirginia

At 58 years old, I became ill with Clostridium difficile (C. diff) after having an abscessed tooth. To treat my tooth, I was initially prescribed Clindamycin. However, this made me sick, so I was switched to a different antibiotic, Amoxicillin. I started to feel even worse about a week after I had finished the Amoxicillin. I had diarrhea, nausea, and a fever--which for one night was exceptionally high. The fever broke, but the diarrhea, nausea, and general malaise continued.

A few days into this episode, I visited my doctor, who ordered a stool specimen test. The test results came back negative--though I would later learn this was a false negative. From that time forward, the medical personnel I worked with treated me based on the assumption that I did not have C. diff. I worked with many doctors, all of whom reiterated that my stool test was negative, thus indicating that I could not have C. diff. I begged for someone or something to help me; I was slowly slipping away into a profound sickness. I felt that I was dying. The illness, anxiety, and depression were unbearable.

I was finally hospitalized after feeling so ill that I was unable to eat (and consequently losing 25 pounds). I visited my local emergency room for the fourth time, and the doctor I saw that day suspected that I had C. diff, despite the previously negative test results. Even so, I was actually admitted to the hospital due to the heart palpitations I had been having. Before this day, I had been to that same emergency room three times, and each time I was given fluids and sent home. I thank God that the fourth time that doctor finally admitted me.

During my stay in the critical care unit, I was eventually removed and put into isolation when I had an attack of diarrhea. There, I had a consult with a GI who prescribed Vancomycin. After the second dose of this medication, I started to feel a little better. Unfortunately, this was only the beginning of a long battle to rid myself of C. diff. I relapsed numerous times and was ultimately prescribed Dificid. After taking this medication, I was able to produce negative results for stool specimen tests. Despite the negative test results, I still felt ill and had terrible post-infectious IBS.

Three years later, I still suffer with digestive issues and anxiety. C. diff has nearly ruined my health. I feel that I am not the same person anymore. I am trying not to let C. diff steal any more than these three years. Every night I pray for relief; to have my health back, and to be the person I once was.

I am proud to say that I am a moderator on a C. diff support site. This site helped me hang on to my sanity, and for that I am so thankful. I pray that a cure is soon found so that our community can put C. diff, a truly horrible and life-altering illness, in the past.

 

Please help PLMF to continue to raise awareness of C. diff by donating today.

Last Updated on Monday, 14 July 2014 07:10
 
Vince and Ava PDF Print E-mail

Brooklyn, NY

As told by their mother Angelavinceandava

My children, now ten and eight, were only five and two-and-a-half when my nightmare with C. diff started.

My son was constantly sick as a baby with ear infections once a month. Since my pediatrician never believed in letting them heal themselves, and I didn't press strongly against the idea, my son got prescriptions for each infection.

In June 2008, my son had an ear infection, as did my daughter. To both of them my pediatrician prescribed an antibiotic: Omnicef, as I recall. They both immediately had stomach issues, but I attributed it to the antibiotics and was not alarmed. One week later, they were still in pain and had fever. My usual pediatrician was on vacation, so I went to see a pediatrician who was new to us. She informed me their ear infections were worse. Onto amoxicillin they both went.

I had no idea how powerful the dose was that they were prescribed. I trusted the pediatrician. She was my nephew's doctor, after all. Ten days after they began this second course of antibiotics, they finished the medication and started having very high fevers. The strange part is it was both my children, not just one. I called my pediatrician, who was now back in the office, and told him that they were on another antibiotic and were now having fevers and diarrhea. He assured me that it was a stomach virus. I continued to call him almost daily and brought my children in to him at least twice in the fourteen days that followed that initial phone call. My children were in extreme pain. They continued to have fevers, and their stools were bloody and full of pus. I was continually reassured that it was a stomach virus.

Last Updated on Saturday, 26 July 2014 10:26
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Disclaimer: The information on this website is not intended to replace the advice of a doctor. The Peggy Lillis Memorial Foundation disclaims any liability
for the decisions you make based on this information and ecnourages you to visit your doctor if you suspect you have Clostridium difficile.