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Life after C. difficile
Dianne Shea thought that the fevers, chills, vomiting, nausea and endless bouts of diarrhea from C. diff would take away her independence. But after a fecal transplant, she says, "My life began again."
Written by Dianne Shea
I've been a paraplegic and a Mayo Clinic patient for more than 10 years. My legs decided to stop working over a period of just a few short months due to a spinal tumor. So I didn't think I was a stranger to adversity. Then I met a nasty little bug they call C. difficile. The name is not ironic. At first I thought I had a very violent form of the flu with fevers, chills, vomiting, nausea and (the worst by far) countless, endless bouts of diarrhea.
My days were filled with nothing more than being assisted to the bathroom, cleaning up, getting back into bed, then starting all over again, weaker than before. I required around-the-clock care. I couldn't get dressed, could hardly eat anything, didn't have enough energy to do the smallest of tasks, and couldn't have any fun. Most importantly, I couldn't get through physical therapies for my legs.
I never dared go outside my home (even on holidays) because of the great fear of C. diff acting up. Often my family had to call an ambulance, and I went in and out of hospitals, not staying at home for any longer than two weeks at a time for the next year. I was terrified that C. diff. would be the thing that made me lose my independence.
I had heard about a new procedure that sounded gross — described as a “fecal transplant” — but that had a huge success rate in solving the C. diff. problem. After losing a year of my life to suffering, I thought I should at least find out about it. And I was put in touch with Dr. Darrell Pardi and Dr. Sahil Khanna from Mayo Clinic.
They were wonderful doctors and educated me on the procedure, its risks and benefits, how it was done, etc. I wanted my transplant as fast as could be arranged! First, I needed a donor. My daughter and son both agreed, but my daughter was the lucky one to go through a few pre-transplant blood tests and checkup. Then I checked into Saint Marys Hospital and did the prep work, which was nothing more than what you would do for a colonoscopy.
The next morning my daughter did her part. (She jokes to this day that she never felt such pressure to do what she does every morning.) Then I was wheeled to the OR. Dr. Pradi had done such a fabulous job preparing me for the procedure that I wasn't worried. The number of doctors and medical personnel that came to the procedure was interesting. I didn't feel, see or hear anything, and the next thing I remember was being told every thing's over, and it all went wonderfully. It wasn't the most fun, but after living with C. diff., it was just another day.
Diane Shea poses after throwing out the first pitch at a Minnesota Twins baseball game.
I remember lying in my hospital bed holding my breath and waiting for the cramps, chills, fevers and diarrhea to start. Minutes ticked by. Then hours, nothing. I moved around in bed, nothing. I sat up, nothing. I ate a real meal, with salad, fruit and dairy, but not a cramp, pain, or even the urge to use the bathroom. I slept uninterrupted. (Oh, to know what that felt like again!) I went home still waiting for something to happen, and nothing did. Each day I got stronger, healthier and happier. I started to go out, at first for a few minutes, and then I got really brave and went shopping, got my hair done, went to a movie, and went out to lunch (and ate). My life began again!
I didn't realize how ill I had become until I wasn't ill any longer. I didn't have to worry about being out and unprepared anymore. I could go out and focus on having a good time. It was a miracle. Thanks to the doctors and staff of Mayo Clinic and my family, I have my life back again.
My advice to others: Don't suffer with this disease. Don't be afraid of the procedure, don't wait one more minute, and don't suffer any longer. Start living again.
In the video below, Diane shares more of her story.
Tags: 4230, 5275, 5335, C. difficile, diarrhea, Dr. Darrell Pardi, Dr. Sahil Khanna, fecal transplant, Gastroenterology, Gastroenterology, Mayo Clinic, Patient Stories, spinal tumor, Vomiting
I have been battling an infection for at least five months now. I think people need to be aware of the HUGE antibiotic problem that can result in “superbugs,” and worse, antibiotic resistant infections. Truthfully, I never believed this until it happened to me.
Sophomore year of high school, I shattered my nose while playing basketball. A week later, my nose was reconstructed so that I could breath properly. It was so damaged, they could only fix so much. I still have a deviated septum that has created sinus problems. I usually have a sinus infection once every three months. These sinus infections are debilitating and often do not clear up with one round of antibiotics.
Early December 2015, I had a sinus infection and was prescribed CEFDINIR. I had never been on this antibiotic before, it worked well for the sinus infection, but created an even worse problem! I began having severe side effects to the medicine and stopped taking it. Four days later the side effects were worse.
I called my doctor and they wanted to see me immediately and suspected I had C. Diff., which I did, and it is HELL! C.Diff is a bacteria that we all have in our bodies. There is th active bacteria and spores which can live anywhere for years. This bacteria is ANTIBIOTIC RESISTANT. When I took the antibiotic for the sinus infection, it killed all the good bacteria and allowed this one to flourish!
After one, intense round of treatment, I still had C.Diff and it was back with a horrible vengeance. I had NO appetite, I didn’t/couldn’t eat much, I was losing nutrients and weight constantly, I had NO energy, and I was still in a lot of pain.
Round 2. I ended up in the E.R. where I was given fluids and my course of treatment was changed. I was put on an antibiotic that treats the infection, but might not treat the spore C.Diff creates. I couldn’t see an end to this and traditional doctors weren’t helping the problem. Yes, I was frustrated and very angry, but I tried to work through it day by day.
Round three. I was tapering off of the first treatment while introducing a new treatment. The reason doctors did not want to prescribe this drug first off was because it can cost an upwards of $2000. I didn’t care, I was going to try anything at this point. Luckily my insurance is great and the medicine only cost $10. Not very many people have this luxury.
I was referred to a gastroentonologist. He planned a careful plan of attack and tapering off of my treatment. We got nowhere, I called him one day concerned because the symptoms had returned after three days off the treatment. He told me to go to the hospital.
At this time, I was at my whits end. I didn’t understand. I felt like no one could help me. The ER Doctor had given me a name of an infectious disease Doctor. Crazy, 26 and very ill, after a doctor treated a common sinus infection. Reluctantly, I went to this doctor. I was squeezed in at the end of their work day because they understood the severity of my situation and wanted to help me rather than send me to the hospital.
The doctor was so honest with me and explained that after three relapses, traditional treatment just wouldn’t work. Finally, someone who wants to treat my infection, not just cover it up. He and his nurse explained the FMT treatment that I had previously researched. This procedure is usually reserved for those close to a colonectomy or someone like me who has had multiple relapses with this infection. Basically, they reset your good bacteria in your body and give you a fighting chance against the active infection and spores.
Three treatments, five doctors, two hospital visits, four bags of IV fluids, months of living miserably, and one procedure later, I have found a viable solution for my illness. Keep searching, keep suggesting, and don’t give up! One doctor listened to me and was ready to tell me the truth. This procedure was not approved by the FDA and was just what I needed. This far into my illness I had researched this procedure and was ready to take my chances!
It has been a week since my procedure and my symptoms are nearly GONE! I had no idea just how sick I was until now, I feel great again. Not only was I sick, but my anxiety was through the roof as I am a middle school teacher (first year) who was constantly worried about when I would have to emergently leave the room!
I am sharing all of this with you so that YOU are aware of the effects BROAD SPECTRUM ANTIBIOTICS can have on a normally healthy individual. This is not to scare you, but rather, inform you. You should be aware of your antibiotic use and make sure you are on the RIGHT antibiotic that specifically targets and treats your infection. Treat the CAUSE, don’t cover it up.
Please, please, please, research before following your doctor blindly and whatever the cost, DO NOT USE CEFDINIR or cephalosporins! There are too many negative reports on this drug. If you have to go on a course of antibiotics, take TWO probiotics a day. I was doing what I thought was the best for my sinus infections and so were the traditional doctors. Doctors will throw all kinds of medicine at you, I believed it was for my well being and so did they. I have learned to try and allow my body to take care of itself and I will be scheduling to take care of my sinuses!
This is very helpful, I am battling this still after 7 months and 4 courses of antibiotics (Flagyl, Vanco- on my 2nd taper). I have the FMT scheduled and curious to know how long it’s been since you’ve had yours. Very worried of going through this all over again and worse putting my best friend through this process again.
I had the FMT on March 23rd, 2016. I have been Cdiff free since! It has almost been a year. I will never be able to be on any antibiotics or the spores will overgrow again. Unless it is severely life-threatening, I am going to stay away. I have also corrected my eating habits and use healthy gut friendly supplements. Look up Dr. Axe and the book Eat Dirt, he actually talks about Cdiff!
Wow, almost 1 year. That is excellent progress! So we have the spores forever? I am on Florastor twice daily, don’t think i will ever get off of it because of how great it’s been. What else are you taking? Sounds like you and i have had it worse than a lot of others who magically recover after 1 course of flagyl, who are those people?!
These spores live in most intestines. It is when they overgrow that cdiff happens. I take dr. Axe SBO probiotics, bone broth protein(in my coffee, it helps with inflammation in the body), and therapeutic grade peppermint oil. I can’t believe that people get over this so quickly. I thought it would never end, but it did! FMT is the way to go!
I contracted c-diff 12 days after returning from Cleveland Clinic for mytral valve repair. I called my surgeons nurse who immediately diagnosed the symptoms as c-diff and advised I visit my local GP here in Aspen. My GP confirmed c-diff was present and started me on one round of antibiotics with no improvement. I was switched to a second, $2000/ten day course of a new antibiotic to no avail. By this time I was in the care of the regions best GI doc who put me on a 6 week protocol of vancomycin. It worked and for the first time I tested negative for c-diff. Unfortunately, I continued to have chills, aches, low energy, headaches and at times a tingling in my legs and feet. This has continued for almost two years now. One to two days in bed and I bounce back for a few days, only to return to bed a week later. The good news is the healthy periods are extending for longer sessions of up to a few weeks at a time, onky to have the “crud” return for 2-3 days. Energy goes and I head to bed. These recurring symptoms sometimes mimic the original c-diff symptoms so much I have had stool samples tested to confirm the c-diff has not returned. Luckily, c-diff has never returned, but these recurring symptoms are almost as debilitating and i am struggling to find a solution. I am open to any input.
I know the cure.! I suffered from extreme C diff for a number of years.
Night sweats, fever, fatigue, the loss of appetite and of course the
diarrhea. I had all the antibiotics, diets, and home remedies that were out
there. I have the same story as you only I am a paraplegic and with each
episode would have to spend weeks, which turned into months in Care units
and hospitals. My life belonged to c-diff. Then my doctor at Mayo Clinic in
Rochester Minnesota referred me to their Infectious Disease Department
hoping for some relief. Dr. Khan had a new program for C diff sufferers
called a fecal transplant, yes it is exactly what you think it is but it is
not exactly what you think it is. My C diff was gone literally and
figuratively overnight. I have not suffered one bout of diarrhea, night
sweats, fevers, and I have my energy back. My testimonial is on the Mayo
Clinic websites and I would be glad to correspond with anyone wanting any
information. They do heart transplants, liver transplants, all kinds of
transplants to help our bodies and fecal transplants simply restores the “
good germs” to our digestions tract, it’s just that simple. It works
overnight! Don’t suffer for 1 more minute, get your life back. I’m glad to
correspond with anyone wanting more information my story is on the Mayo
website along with the explanation of fecal transplant. Good luck I hope
you find relief
Sarah,
Sorry to hear your pain. I am going through the same thing and have been battling this bug for 7 months. I have relapsed 3 times and probably had a false negative the last time. My infections disease doctor also told me that until i have the transplant, i will always get this again considering the spores. I am in the process of being setup for the FMT, how long has it been since you had yours? I am worried that this will come back eventually and will have to go through it all over again.
Sarah,
I have been C-diff free since last March! I am happy to report that it does work! Make sure you have a healthy donor! I can finally say that I have my life back! Hang in there, Cdiff is debilitating, but there is hope. Try and have the FMT sooner than later. Are you on Vancomycin? It was the only medicine that kept my symptoms at bay until I could have the FMT done.
I got c diff after I took medication for a UTI. I’m a paraplegic and as a result I am incontinent. I’ve been battling this infection for 17 months. After three rounds of antibiotics, and six fecal transplants, I am still dealing with this. At this point, I can’t even get a doctor to answer my calls or the calls my doctor has made. I am completely at a loss of words. Now I ‘m dealing with increased anxiety and depression. I work full time, so I have some good days, but most are miserable. I have social anxiety, to the point that I never want to leave my home.
Cristi,
I am so sorry to hear this. There is hope! Have you read Eat Durt by Dr. Axe? His experiences with stomach issues, including Cdiff completely change my life. I take his supplements and there is even a diet to follow for those who are terribly ill. I would definitely try this! Again, I am so sorry, but trust me, this is the next step I would take.
@ceceliatbasilotto
I have been with C/Diff and also MRSA for almost 4 yrs. Also nagged constantly with UTI. So once the C/Diff was gone the first time and the UTI kept coming back , I knew I was in trouble again. This time also gastro paresis. Many more trips to Mayo , more procedures, more meds. until enough of the infection is gone for possibly another transplant. I am so emotional over this whole thing.. Another weekend until test results are back. This is no way to live , so I will wait , then go and get more treatment until it is gone. Hopefully for good. ENOUGH