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Stories from patients, family, friends and Mayo Clinic staff

November 6, 2013

Life after C. difficile

By SMHNadmin

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."  

Diane Shea with her fan clubWritten 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 throws out first pitch at Minnesota Twins game.

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've had recurrent c-diff. My last fight with it started in Sept of 2015 when I developed a severe hernia which required surgery and of course I received antibiotics during that procedure. Knowing the classic signs I started having of c-diff shortly after I went to my GP to request a test. It was negative. So by February of 2016 when I still was sure I had c-diff I went to see a Gastro. Knowing my history of c-diff he decided it was stress and sent me home. So for the next 6 months I continued to lose over 80lbs. By March of 2017 I went back to my GP begging him to do some tests. C-diff came back positive, the previous was a false negative. Shocker. But now I've had it for so long after another 4 months of Flagyl and Vanco nothing was helping so in Nov 2017 I received a fecal transplant. My c-diff test finally came back negative but my symptoms have not gone away and my weight is just getting lower and lower. I've now lost more than 125lbs. And after so many scopes and colonoscopy and biopsies they are like it's IBS. Has ANYONE had similar experiences? I'm at the point now where I'm a walking skeleton and getting no help.

COMMENT

Thank you for sharing. You might consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences with C. difficile (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/). You can also read Mayo Clinic expert blogs and take part in educational events.

COMMENT

I came down with c-diff in June 2018. It took 4 months to get rid of. I got after I had taken about 4 different antibiotics for an abscessed colon. I was so sick I wanted to die. I was on the hospital for a week for the abscess. When I was released I wasnt told about the possibility of c-diff. I was still taking antibiotics at home. Two weeks after I had finished them I got deathly I'll. I went to the gastro for follow up from abscess and told her what was going on. She said we need a stool sample. The nurse called me and said it was c-diff. I was never told about the possibility of this. I was never told to take probiotics when I left the hospital I was told to eat yogurt to help replace good bacteria. After 4 months of Flagyl, Vancomiacin and probiotics I tested negative. This was about the end of Sept. In early Nov I started having a lot of abdominal pain, extreme nausea. Every time I eat or drink anything. It usually starts the first thing in the morning, some days I feel pretty good until late afternoon. I went to the gastro Dr in Jan and she thinks it may be my gall bladder. So I'm undergoing tests for that. Oh, and I was given phenergan for the naseau and bentyl for the intestinal pain. I'm sick and usually in bed 3 days at a time then I feel good for 2 or 3. I basically haven't felt good since last May. This has affected my life, I don't feel like going anywhere or doing anything. I usually love making crafts and doing needlework. I have to plan my life around whether I can eat or not. If I have the bentyl and phenergan together I'm zonked. Most of the time I can just get by with the phenergan. Sometimes I'm so hungry but I know if I eat I'll either be nasueas, or in severe pain and then take medicine and be zonked. I have lost some weight but I'm not concerned I needed to drop some. My main concern is that I'm not getting enough nutrients. Even on good days there are very few foods I can tolerate. I've also been diagnosed with diverticulitis. Some days I can eat certain foods and the next time eat the very same thing and get dealthy sick. Has anyone else out there had anything like this after c-diff. I'm so tired of this, no one in my family understands. I hate my life

COMMENT

Thank you for your comment. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

COMMENT

My mum has had this & it's dreadful been in hospital twice for c diff then once with diarrohea YET no temp then home & up again still on c diff antibiotics & now constipated
been in hosp 4 times in last 7 weeks
mum hasn't got a life anymore neither do I

Editor’s Note: Thank you for writing. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments. You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

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