My friend’s story
This is the true account of the death of the husband of a friend of mine, this summer. I am not using their names, as I have not asked nor has she given permission for me to share this story. However, I think it’s an important example that demonstrates what it still happening to people dying from C. diff.
My friend’s husband had been receiving outpatient chemotherapy treatments at their small, regional hospital, and doing well, with an excellent prognosis and no problems.
He had his regular treatment on a Friday. That night, he developed diarrhea. By the next day, it was so severe that his wife took him to the ER at that same hospital.
He was admitted, but they were unable to determine the cause of the diarrhea, so on Sunday, he was transferred to a larger hospital in a nearby city. Later that day, his wife was told he had C. diff.
He was not responding to treatment, and it became apparent that he was going to die. My friend, who was accompanied by two other of my dearest friends, knew all about my struggles with C. diff., and how my life has been saved twice by fecal transplant. They all also knew about this website, and all the information it contains.
They begged the doctor to try a fecal transplant. He told them he had never heard of fecal transplant. They continued to cry and beg, literally, for the husband’s life.
The doctor told them he did not want to hear anymore of their “bullsh*! quackery.”
The next day, my friend’s husband died.
I received the call later that day from one of my friends who had been with her.
She said my friend was not only devastated by the loss of her husband, but that they were all so angry and frustrated at the thought that a simple fecal transplant may have saved his life.
In my own grief, I struck out to determine if it would have been too late for my friend’s husband. And to my shock, I found out that in the 4 studies done to date on patients with fulminant, or terminal, end-stage C. diff., that a last minute fecal transplant saved the lives of 70% of them. 7 out of 10 lived.
I have not had the heart to share this information with my friend, because I don’t think she is ready to hear it.
But some day I will have to.
A doctor cannot be charged with malpractice or wrongful death for NOT doing an “experimental” procedure, nor should he be. But this is one of the urgent issues we face.
We need a hotline that’s available 24/7 for doctors who have patients with terminal C. diff. who would like to try a fecal transplant but have no information or experience with it.
We need information in every ICU and ER that it is CRITICAL that a patient presenting with severe diarrhea be tested IMMEDIATELY for C. diff.
And we need doctors to listen to their patients or their patient’s families about care they are requesting.
It is November of 2013, and there are still ICU doctors at Level One Trauma Centers who have never heard of a fecal transplant.
Please help us, so that no one else has to go through what my friend did, just a few short months ago.
The Fecal Transplant Foundation
This story is published with the expressed consent of Jaimi.
My daughter, Jaimi, has ulcerative colitis. She’s 22 years old. Jaimi got her first symptoms about two years ago. It was off and on but always getting a little worse until June 2013 when she had to withdraw from school during finals, unable to take her last tests. In July, the colonoscopy showed that her colon was COMPLETELY ulcerated—nothing clear. What started as proctitis in 2011 had grown into pancolitis, and right after the procedure, her doctor said that she needed surgery within the next three months. Jaimi calls these the worst days of her life.
After that, wanting so much to keep her colon, we tried everything. The doctors ramped up the medicines (Remicade, steroids, 6mp, etc.) to their highest levels, but said after that the only recourse was surgery. We took care of her the best we could, trying to give her the foods her doctors suggested (low fiber, which seemed to have no effect or worsen symptoms) and finally settled on the Specific Carbs Diet. It was very expensive and time consuming and I made so many mistakes in buying and preparing food that I almost gave up…
Then, about the end of July, I found an article on C. diff FMTs; Jaimi’s grandma read about the alternative treatment; and Jaimi herself heard about it online, and within the week we were researching and speaking with specialists. After hearing from Dr. Mark Davis, N.D., here in Portland, Ore., we decided to commit to the FMT to try to stop Jaimi’s wasting away.
At this point she was 110lbs (her normal being 125) and the doctors continued to suggest surgery (they were very skeptical of the use of FMTs and did not want to encourage us to go this route).
Since Jaimi did not have C. diff colitis, she could not do this through the hospitals—the FDA had put a stop to all of them (with the exception of C. diff). So I decided to do the FMTs myself (I won’t go into the details of what this entails…Suffice it to say there is a definite “YUCK” factor involved until you get good at it and used to it).
Starting August 8th, we did 10 FMTs for 10 days. Jaimi felt the same and saw almost no improvement in symptoms. Then we did every other day for a week, and then started the second 10 for 10 days again. Again, no improvement for the first seven, but then Jaimi noticed a little less pain. After this second 10 for 10 we went to every other day.
On September 16 she saw her doctor. She was now down to 95 lbs and the doctors said they could not even do surgery now because her weight was so low and it would be too dangerous. This brought me to the lowest point I think I’ve ever been. I gave up hope and just cried and had flashbacks about raising Jaimi….her life with me….all the hopes I had for her life….I thought God was calling her home.
The next day, September 17th, she had a colonoscopy to determine the current damage. But instead of finding the completely ulcerated colon again (or worse), they found that the top third was healed and the bottom two thirds looked like healing was taking place there, too.
The doctors were floored. So was I, to be honest. What a turnaround! They said to keep doing whatever we were doing but that we had to get her to gain weight.
And we’ve been doing that now for about 11 weeks. Continuing the FMTs twice a week and giving her high fat coconut milk and deep fried anything in coconut oil (found that this type of fat is the easiest to absorb into the body). We’ve stayed with the SCD diet for a total of three months now (very hard) making homemade yogurt—in fact, everything is homemade!
God gave Jaimi back to us. She’s been gaining weight at almost a pound a day. She is now up to 120lbs! But the really great things are….
She can walk again.
She can drive again.
She can study and read again.
She started taking classes again (online).
Almost no blood.
No “15 times a day to the bathroom” (one or two now).
No more crippling pain.
Again, the doctors are amazed! The latest CRP test (inflammation marker) was down from 55 in September to less than one now.
Jaimi shines! And she will be going back to college in January.
Her life has been changed though. I wonder why she had to go through this—why my whole family had to go through this. A grace from God in ways we’ll probably never know. We both hope we can give back in some way to others who need encouragement and help!
Listed below are a few things that may be helpful to know if you are just starting to investigate using FMTs :
1. Call Dr. Davis (in Portland, Ore.). He is intelligent, thoughtful, empathetic and very forthright and honest…extrememly helpful.
2. Give yourself TIME. Keep going at least as long as we did (I believe in this science. My thought on this is that UC symptoms manifest because of an imbalance in the colon micro-flora and that all people with UC will eventually begin to heal if they continue a regular routine using FMTs (which is basically correcting this imbalance through replacement using the donors healthy biotica. My 17 year old son—Jaimi’s brother—is the donor, by the way, and she couldn’t be more thankful).
3. Finally: I made mistakes. The biggest, I think, was that I didn’t insist on Jaimi doing a complete cleansing fast and enema just before the first FMT (which Dr. Davis recommends but Jaimi just didn’t want to do it). The logic of doing this is obvious but I think that even if you don’t do this you will still see results, just not as quickly.
Note from Jaimi: She would love to talk to anyone with UC who needs some support and someone to talk to who has gone through the FMT process. Contact Catherine Duff through the Contact Us Form on this website to reach Jaimi.
Well, the story goes on…but for now, that’s it…
My C Diff Story
My name is Megan and I live in Pennsylvania. I am 29, married and I have three small children. I want to share my story to help others who are battling C Diff. I often felt frustrated, angry, scared and depressed along with being frequently sick. I want to share because I want others to know that they are not alone, they are not isolated.
How did it get it? Well, we are not sure at what “point” I got C Diff. What I can tell you is that in 2012 I was pregnant with my 3rd child. Often I would 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 once again. This time however, it was accompanied with a burning sensation. On the 28th , the same thing. On the 29th however, it stopped. I just thought it was a stomach bug. Just after midnight on the 30th, 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.
With in one month of his delivery I started to have terrible burning and cramps after I would eat breakfast each day. After a few days 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). After a few weeks it progressed to every meal or snack. I would not have any other issues with these symptoms.
The burning sensations caused me to be seen by my GI doctor. They initially ordered an upper Endoscopy. It revealed nothing. Because the symptoms continued, she had me tested for C Diff. The test was positive and I was started on flagyl. After being on the flagyl for only two weeks, my doctor called and said my strain would not respond to the treatment and I was to start Vancomycin (January of 2013).
After my first three weeks of being on vanco, I was still getting sick. My doctor once again put me back on it and encouraged me to take it every 4 hours. I continued to get worse. While on my 2nd round of vanco I started to have the bouts of vomiting and diarrhea closer together. My doctor told me she was out of solutions and she wanted me to consider getting a fecal transplant and to meet with infectious disease.
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. I would cycle between bouts of diarrhea/vomiting to constipation. Now I need to clarify my ‘constipation’. For me it meant that my digestive tract was shutting down, not that I was having dry, hard to pass stools. My body would stop processing the food I was taking in. Then it would reject it, hence the vomiting/diarrhea. In fact even if I had not gone in a few days, when I would go, it would be easy to pass.
I began to research fecal transplant providers and to see if my insurance would cover it. Upon calling my insurance, I cried on the phone with the service agent, yes they would cover a transplant! I found a hospital in the Bronx that provided them and I called my GI’s office to get a referral. During that call I found out that my hospital provided them. (My GI doctor worked at a clinic, there is a major lack of communication there! )
The hospital staff would call me to talk about it. They did in less than 24hours and told me I was a perfect candidate and the doctor would call me to talk about donors. I also met with infectious disease a few days later. 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,…that we need to do a vanco taper pulse and that should work…if it did not he wanted to try another antibiotic that cost $5,000.00 per month and I would be responsible for the $1,000.00 co-pay”. I said “NO, I already had over $1,000.00 of co-pays that I owed, I could not afford any more”. I would be willing to try a vanco treatment again and if the hospital would not to a fecal transplant, then I would go elsewhere. During this conversation I also asked the doctor about disinfecting methods. His words were “well you only need to clean your bathroom and kitchen….you can use those Clorox wipes, they should work…”. I then informed him of what the CDC says is appropriate for killing the spores and that Clorox wipes did NOT contain any bleach. I felt hopeless, he did not seem knowledgeable and it was Good Friday (April of 2013).
All weekend over Easter, I prayed. I was so sick and it was not getting better. I felt lost, and believed that I was going to die of this as my grandmother did (scary, right?).
On Monday I had a very intense feeling that I needed to talk to the GI office. I needed to know who was in charge, did I qualify or not? After another appointment with doctors (for my skin…I’m getting to that), the doctor I met with really got the ball rolling. He made me feel so much better and he gave me hope. He encouraged me to go to GI and to talk with them. I did. As a result, Dr. Komar on the spot scheduled me for my fecal transplant, date, time and instructions. He explained how some departments have a mind-set that only antibiotics could fix C Diff. he thinks differently. He did encourage me to continue the vanco/florastor until my transplant. I left feeling great.
Jumping ahead to my transplant prep…I felt great. It was until I had to stop my vanco for the treatment. With in 24hours of doing so, the pain/nausea came back. I made it through. Yesterday I had to drink two 32 ounce Gatorade bottles with Miralax in them, plus I had to take four 5 mg laxative tablets with an all liquid diet.
I started the prep at 3pm with the tablets, nothing happened. At 6pm I had to drink one of the Gatorade/Miralax mixes. I went to bed by 10pm. Around 12:30 I had major gurgles and I did not sleep well. At 2:30am, I woke and it all started to come out. I was in the bathroom every 10 minutes until 4am. It did not really hurt, but I did get a bit sore. I managed to sleep from 4am until 6am. At 6 I got up and helped get my daughter off to school. By 7am I had to drink the second Gatorade/ Miralax bottle. After I drank that bottle I started with major cramping/ burning and having to run to the bathroom.
The pain continued up until sixty minutes before my transplant was to start. Then it stopped in time for me to be prepped by the staff. I was not nervous at any point. I knew I had to go through with it, because I have to live for my children. The staff placed my IV and went through my medical history. At that point my donor was ready to give the sample and they took me in to the operating room. It was a large room with a bunch of nurses and doctors. They each introduced themselves to me. One of the nurses (who had prepped me) had asked if she could watch the procedure so she could tell her other staff members about it, I said yes. The staff were really nice, they had me move to my left side and bend my knees. They made 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, I did feel wet ‘back there’. So waking up to that was gross, but there was actually nothing there…the nurse explained that it may have been some of the lubricant they used for the procedure. She helped me to sit up and get something to drink. The doctor told me that I looked great! That I have no signs of colitis, nor any signs of IBS. I was not very groggy and I got up about 30 minutes later and was driven home. I don’t feel sick, I am tired and my belly is grumbling, yes I can eat anything I want except alcohol. I was encouraged to try not to poop today. We need to keep as much of the donor stuff in as long as we can.
So that is my story. As a result of this one year ordeal, I have found out that my skin disease is what caused this. As a result of it, I frequently have to be on Clindamycin and I use a topical version of it. I can no longer do so. With developing the C Diff, I now will be meeting 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 you is to not loose 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.
There are two ways of getting a donor. 1. is to use an anonymous sample or 2. ask a friend or family member who has not been on antibiotics with in the last 90 days. I know my donor and I am 100% confident that they did not have any infectious diseases. They were screened for C Diff prior to the procedure. Yes, it was a bit “funky” for them to do, but they stepped up on their own and they knew it would save my life.
Did I loose weight? Yes, but not as much as some people (10 pounds total). I would force myself to eat noodles and broth or cereal. I had to, I have kids and a home to take care of, a business to run and I also write grants for a local non-profit faith based organization. They need me, God knows I don’t want to leave and I have a lot more good things to do here. Advocating for C Diff education and prevention is now one of them. I hope this has given you hope, perspective and a renewed strength to keep fighting.
Please visit Bobbie’s website cdiffsupport.com as an additional resource about C. diff. The Fecal Transplant Foundation would like to thank Bobbie and C. diff. Support for their support.
C. difficle: The Gift that Keeps on Giving
In l979, when our younger son, Sam, was four, his pediatrician prescribed amoxicillin for bronchitis and an ear infection. I said I had a “strange feeling” but the pediatrician insisted on amoxicillin. Several days after Sam finished it, he developed diarrhea, became lethargic, and slept constantly. I carried him into the pediatrician’s office who said, “Let’s give him a couple of days.”
I called Sam’s pediatric GI who told me to take him to Children’s Hospital immediately. When I parked in the underground parking lot, a group of doctors met us at the car. One of the pediatric GI’s studied under Dr. John Bartlett at Johns Hopkins, who discovered oral Vancocin was effective against C. difficle. They hospitalized Sam and administered IV Vanco. without effect so they tried oral Vanco.
Three days later, Sam regained consciousness. He had two reoccurrences and hospitalizations but eventually was C. diff. “cured.” Between reoccurrences, I was driving a car pool for my older son and his friends when a woman ran a stop sign and slammed into my new car almost totaling it. Our pediatrician of l3 years dropped our sons as patients, and it was difficult to get another doctor.
I found an article in GUT Magazine at the University of Nebraska medical library about using IV Vanco. orally as a treatment for C. diff. It referred to an “interesting severe pediatric case in Omaha.” There were few references to C. diff. in newspapers or other media for years. Sam had a history of health issues before C. diff. (including gastroenteritis and hospitalization when he was three months old.) He was a high risk pregnancy. (I leaked amniotic fluid the last 3 months; I’d lost our premature son under the same conditions.)
We moved to Kansas in l980. Sam struggled through school with respiratory and GI problems. He had C. diff. again in 6th grade but graduated from high school with honors in l993. (He is now 38, smokes heavily, and ignores all health issues.)
In March l993, my doctor prescribed a “new antibiotic” Vantin for a sinus infection. I was 52 and healthy except for allergies and sinus infections. In May, I was hospitalized with pneumonia, sinusitis, a UTI, and C. difficle. I weighed 98 pounds, could barely climb the stairs in the auditorium for Sam’s graduation, and had sinus surgery the following day.
My first bout of C. diff. lasted four years. I went to Mayo, where I was misdiagnosed with IBS. We went to the U. of Michigan Med. Center to enroll in a blind study for S. boulardii and was given it later for two years under compassionate usage; it didn’t help or harm me. I took a new probiotic (Culturelle) for two years without success. In l997, I tried “the broth” which had failed earlier. It’s a “procedure” in which a lab-grown strain of “good” E. coli and Bactericides mixture is inserted by endoscopy and colonoscopy. It worked, and I was C. diff. free in l997 although I developed IBS which is common after C. diff.
I worked as a legal assistant most of time I was ill but continued to acquire other health issues: four more bouts of pneumonia, osteoporosis from malabsorption, a hiatal hernia and acid reflux, asthma, and UTI’s with IC. (Some experts say C. diff. affects the immune system.) When I first developed C. diff, I ground my teeth from stress, broke two teeth, and an oral surgeon pulled the wrong tooth which spread the infection and caused C. diff. osteomyelitis. I was on IV Vancocin for seven weeks while on oral Vancocin for C. diff. I inserted the IV through a PIC line in the morning, flushed it, drove to work, worked late, drove home, and repeated the treatment.
A dentist and an orthodontist repaired my teeth with bridges and braces. In l999, I had pneumonia, was hospitalized, treated with Levaquin, and developed C. diff. for the second time. The broth worked but left me with IBS again. Working kept me sane.
In 2000, my job was abolished, and I chose to retire at 60. In December 2006, I fell and broke a vertebra. I was C. diff. free for almost 9 years and survived a Z-pak for pneumonia without a reoccurrence. I had IBS for seven of the nine years.
In the spring of 20ll, I won several trips based on an article I wrote about C. diff. I attended an open forum of the FDA in DC regarding a new medication and a trip to Orlando for the drug’s “kick off” meeting. Several other patients and I gave speeches about the agonies of having C. diff. I never took the medication but mentioned the need for new treatments.In December 2011, I had to take ampicillin for a UTI not caused by E. coli. (I take 50 mg Macrobid as a preventative; it’s effective against E. coli.) Many family members died in December, including my mother (and best C. diff. friend) who died on my birthday on December 20, 2009. (We moved her from Montana to Kansas City after she broke her hip in 2002. We lost our premature son on December 20, l970.)
Earlier in December, 2011, I was involved in a no-fault, non-injury accident. Both vehicles were badly damaged. Several days after finishing ampicillin, I developed C. diff. for a third time and was treated with Vanco. I fractured my left wrist while making a bed.
In May 2012, I had a FMT in Oklahoma City. As we arrived at the motel, it started to hail which shattered the sun roof of our car. (The car was later totaled.) I’d just finished the prep for a colonoscopy when the toilet in our motel room began spewing water and continued all night. The hospital, Baptist Integris) and the GI’s, Dr. Mark Mellow and his associate who performed the FMT, were impressive. I slept all the way home and held the transplant for three days. The C. diff. was gone; I had IBS again but not as badly as after the broth treatments.
In October 2012, my husband, our younger son, and I attended our elder son’s wedding in Bath, UK, our 9th trip. My husband and I developed respiratory infections. He took a broad spectrum antibiotic and recovered. My infection turned into pneumonia (5th time), and I asked for a Z-pak. A month later, I developed a UTI which responded to Macrobid.
In January 2013, I had severe abdominal pain and went to ER several times. CAT scans didn’t show a cause, and a PCR was negative. I was hospitalized for one day – long enough. The hospitalist prescribed oxycodone and amitriptyline. No thank you. A colonoscopy showed diverticulosis and one polyp but no explanation for the pain. Finally, a C. diff. expert provided guidance, and after several months of pain and medication, my husband and I did eight fecal enemas followed by one more two months later. They were effective for the pain, but I have slight IBS and diverticulosis.
My GI tract has been under siege for more than 20 years. I’ve had as normal a life as possible, travel, and still attend Jazzercise four times a week after 23 years (have clothes older than some of my classmates). I’m in yoga, other numerous activities, and do free-lance writing. I’ve been a moderator on an online C. diff. support site for over l4 years and an administrator for five. On the site, we refer to C. diff. as “the gift that keeps on giving,” “the WWW (Watch, wait, and worry) disease,” and “the Beast.”) We stress “gut feelings,” persistence, patience, and humor.
Now, more is known about C. diff., and there are other treatments besides Flagyl and Vanco. including FMT’s, which are becoming mainstream medicine. C. diff. is still not a widely recognized infection – possibly because of the “ick” factor. We need to instill more awareness in the medical profession and the public and more education about hygiene and choices of treatment. Cases of C. diff. should be mandatorily reported.
I’m 72, and C. diff. has terrified me for 34 years. None of my other health issues compare to the stress and anxiety of having C. diff. Some posters with cancer say it is worse than cancer. We must eradicate this ugly bug that affects more people than MRSA and maims and kills thousands.
On March 1, 2013, the CDC reported C. diff. was linked to 14,000 American deaths each year.
(l) 1. www.cdc.gov/hai/organisms/cdiff/cdiff_infect.htm
(as excerpted from Huffington Post Science, 05/30/2013)
Last August, Rhiannon Maher, then a 20-year-old college student, was diagnosed with C. difficile after experiencing diarrhea, vomiting, and high fevers so severe that she had to drop out of college and quit her job, according to The Verge. The antibiotics her doctors prescribed helped at first, but the infection kept coming back.
“I was in a lot of pain,” Maher told The Huffington Post in an email. “I couldn’t eat. I was dehydrated, couldn’t stand up without getting dizzy and my doctor wanted to put me back in the hospital for the ninth time so I could be on IV fluids and more antibiotics. My mother thought I was dying.”
Maher’s mother, Paula Peters, begged doctors to give her daughter a fecal transplant, but doctors demurred on account of the new FDA policy, according to The Verge. So her mother followed online video tutorials and transplanted some of her own stool into her daughter.
“I noticed improvement right away in my energy level, less frequency going to the bathroom,” Maher told The Huffington Post. “My appetite hasn’t quite come back yet but my colon will take some time to heal because of the damage done by the C. diff.”
The fecal transplants haven’t been a “magic bullet,” Maher said in the email. But, she said, “I can eat and go to work and function like a normal person, which is all I wanted to do.”
The Centers for Disease Control and Prevention estimates that diarrhea resulting fromC. difficile infections kills 14,000 Americans each year.
More on Rhiannon’s story (as excerpted from The Verge, by Amar Toor, May 24, 2013:
For Rhiannon Maher, the suffering began last August. Maher, then a 20-year-old college student, had recently been hospitalized for colitis after experiencing a bout of vomiting and diarrhea, but her doctors soon diagnosed her with a far more serious condition: Clostridium difficile, or C. diff, a debilitating intestinal bacterium that kills an estimated 14,000 Americans every year.
Her mother, Paula Peters, spent the next nine months taking care of Rhiannon, tending to the girl as she endured high fevers, chills, and a seemingly endless cycle of diarrhea. Bedridden and gaunt, Rhiannon was forced to drop out of her local Massachusetts college, quit her job at a candy factory, and was too embarrassed to tell her friends why she couldn’t go out with them on weekends. The expensive antibiotics her doctors prescribed at first showed promise, but within weeks, the C. diff would come roaring back.
“The C. diff took over my life,” Maher said in an interview with The Verge. “It never really occured to me that I might die, but then I was in so much pain sometimes that I was like, maybe that wouldn’t be the worst thing in the world.”
Desperate for a solution and tight on money, Peters begged her physician to give Rhiannon a fecal transplant — a rather experimental, yet remarkably effective treatment whereby feces from a healthy donor are placed within a C. diff patient’s intestines, either through an enema, colonoscope, or tube inserted through the nose.
Rhiannon Maher counts herself among the growing number of self-treated C. diff success stories. Earlier this month, her mother prepared and transplanted her own stool to her daughter, using online video tutorials as a guide. Rhiannon says she began feeling healthy again just five days after the transplant, as her diarrhea subsided and energy levels gradually returned to normal. Now, more than a week later, she’s looking forward to seeing her friends and returning to everyday life once she weans herself off her mom’s transplants.
“I still can’t go anywhere overnight because my mom has to be there to give me the transplant in the morning, but the payoff is worth it,” she says. “I’ll be going back to school, too, and I’ll get back to studying. But I think I’ll have a whole different perspective on things.”
I’ve been ill for over 20 years. I was very healthy and active, hiking the Grand Canyon, etc., then picked up C. diff. either in the hospital for a unnecessary small procedure or from broad-spectrum antibiotics. It went misdiagnosed for years. I was told by a top researcher on the east coast that it wasn’t possible that I had C. diff. I had severe cramping, lost weight, was unable to work, and they said it was IBS. No one thought to test for C. diff.Long story, but a top parasite doctor finally thought to test for C. diff., and found I had it. I was treated with vancomyacin, the cramping stopped and I gained weight. Since then I’ve been fighting severe dysbiosis. I’ve been unable to work, and I have many symptoms including severe migraines that can be somewhat controlled with Alinia and s. boulardi. When I was diagnosed I was living in Oregon and researched C. diff. at the OHSU Medical Library. I still have printed research from that time.
Recently I was set to be screened by a top medical university in America when the FDA stepped in. A few days later my doctor received an email from this university doctor who was setting up the FMT Department. He was in Washington, D.C., trying to work with the FDA. They said it might be one or more months. Now I have to decide, wait, or just do it at home. I live outside Austin, Texas and have yet to find a healthy donor. We need donor banks!! How that would be done, I don’t know.I thought this background information might give you some varied perspective on the different types of C. diff. I didn’t come close to death, but often I wanted to die with the sickness. Many of us live with severe dysbiois from the vancomyacin since everyone’s gut garden flora is different. I have up and down days, but I am motivated. The suffering that I see from this illness and from others is horrible and unnecessary.
In March 2011, I had my gall bladder removed due to it being infected and full of stones. I believe this is where my issues with C. diff. started. I was on a surgical unit in the hospital. I had antibiotics. As soon as I got home the diarrhea began. Doctor after doctor attributed it to not having a gall bladder anymore. I tried all the drugs but I still would have 5-7 watery bowel movements a day. This went on for a year. I had several colonoscopies and EGDs that showed inflammation throughout the GI tract and one that showed a candida infection in my esophagus, but no one ever said the inflammation was Crohn’s or colitis. So I struggled for a year. I lost 10 pounds in that year. I had two small children who were missing out on having fun with friends because I couldn’t go anywhere for fear of having an accident in the car. I finally made an appointment with a womens GI specialist in Providence. She was booking far out and in the meantime one night at work I came down with severe diarrhea, nausea and vomiting. It was a LONG ride home. I called in sick to work that weekend and spent Saturday and Sunday between my bed and couch. At one point, my son found me lying on the bathroom floor and I remember him yelling “Daddy, Mom’s sleeping on the floor!”. Most of the rest is a blur.
My husband brought me to the hospital the 3rd day of those symptoms, which I just assumed was a flare up of my “gall bladder diarrhea” (at this point I totally forgot that about 2 weeks earlier I had been on clindamycin for a root canal). I figured the ER would just give me fluids and send me on my way. They couldn’t get an IV in so they did an abdominal CT scan without contrast, which showed my entire colon was inflamed and thickened. They diagnosed me with colitis, either inflammatory type or infectious, they weren’t sure yet. They wanted to put a central IV line in my neck because they still couldn’t get an IV in but at that point I had a mini meltdown and just cried to go home. They had me take some Ativan under the tongue and once I was sedated (or knocked out rather) they fished and were able to get an iv in.
Bloodwork showed a fierce infection and liver enzymes were all out of whack. My liver and spleen were also enlarged.So I was admitted. I assumed I’d go home the next day; no one stays in the hospital for long any more! I told the admitting doctor about my history of diarrhea. They put my on IV fluids with potassium, IV Flagyl and I tried to get some rest. The next day the GI doctor came in and told me my stool was positive for C. diff. I didn’t know if any doctor prior had ever tested me for this, and he said I was not your typical C. diff. candidate, so maybe not. He assured me a day or two on Flagyl and I’d be good to go. My brother was kind enough to email me an article about a new treatment for C. diff., fecal transplant. I thought it was the most disgusting thing I’d ever heard of.Oh, was he wrong. About day 4 or 5 into the hospitalization I felt worse. I was so weak. They changed me to oral vancomycin.
The nurses wanted me to call them when I needed to go to the bathroom so they could help me but when I had to go I couldn’t wait for them to come all the way down the hall to the isolation room and gown up. I had to go…NOW. SO, I do remember once crawling there. It wasn’t pretty. I felt like I was getting worse not better. I was still having severe projectile vomiting and diarrhea, even on just liquids.The morning of day 6 my 4 year old son was admitted to a different hospital. Now I was really a mess. My 2 year old daughter was being shuffled to different family members, my son was at Hasbro in Providence and I was in a hospital in a different city.
I was alone and scared I wouldn’t get to go home and see my children and my son needed me. So I knew I needed to get better. I begged them to let my try and eat something, anything. I was sure if I had something to eat the nausea and intense headache would go away. Well, I still vomited and had diarrhea but at least with something in my I started to feel a bit better. It may have been around this time they also had to give me IV magnesium; even on all the meds I was still dehydrated and my electrolytes were crazy.Finally on day 8 I was sent home. I begged. I needed to see my children and let them see I was ok. So, very weak, I went home. I was given another 14 day course of oral vanco. At this point I was still having diarrhea maybe 5 times a day.So the following week I had a regular follow up with my hematologist (I’ve been severely iron deficient pretty much since the whole diarrhea things started and have had to get many iv iron infusions).
I was still having much diarrhea and was dehydrated and fainted while I was there, so they brought me to the ER where they did another C. diff. test. They called on the way home and said it was indeed positive, but that I did not need to be admitted unless I really wanted to (no thank you). So more vanco.The following week I had a follow up with the GI who saw me in the hospital. I still felt horrible so he changed the dose on the vanco and gave me 3 refills in case I needed them. I thought to myself, 3 refills?! I didn’t want to need them! I wanted this to go away. My poor children were watching me basically die. My husband had to take off much of the summer to care for them and me. I couldn’t go anywhere because I was afraid of not finding a bathroom in time.
Finally maybe 2 weeks after that, the appointment with the GI in Providence came around. I didn’t even talk to her about the year long battle with diarrhea, just the C. diff. She was surprised no one had done the tapering course of vanco yet, so we did that. She did a scope and it showed mild inflammation. I then had many follow ups with her nurse practitioner and she kept mentioning I should see Dr. Colleen Kelly for a fecal transplant. The idea still grossed me out. After repeatedly seeing the nurse practitioner I was convinced and I emailed the study coordinator for Dr. Kelly’s study. Her office was amazing and got me in very quickly. My husband came with me because if I was going to do this he’d be my donor. She said I was a perfect candidate for her study but too sick at that point; we didn’t want me to risk getting any worse. When I was slightly better, she signed me up for a fecal transplant, and that was that. Until my husband’s stool came back positive for C. diff. So the procedure was cancelled.
My mom volunteered to be my donor, so we began the screening with her. She tested fine. Then they said I had to go in in just a couple of days. I was excited, nervous! When I went Dr. Kelly (who is THE most compassionate doctor I have ever met) explained the FDA’s stance (this was back in November 2012) and she had to file an emergency IND application for me. I can’t believe she did that for me, someone she didn’t even know. She had to do so much extra work for it. I am forever grateful. The procedure started, and while I usually fall right asleep during colonoscopies, I was so worked up I remember watching the whole thing on the screen. It was amazing. I was able to hold it in for just about an hour. I went home. Felt fine. And have felt fine since. Some minor irritable bowel but nothing that’s unbearable. Dr. Kelly is amazing. My kids finally have their mom back. My husband has his wife back. My mom didn’t have to see her daughter die. I am so thankful I was able to get into Dr. Kelly’s office and get the procedure when I did. I can’t imagine being one of the patients who need it now and can not get it because the FDA’s decision.
As a pharmacist, I feel most of the drugs I dispense have more potential side effects than someone else’s feces! And it was a drug that started this all for me…My family just came back from Disney World! I would have NEVER been able to do that trip any time in the last 2 years before my transplant. I am so very thankful.
Melissa’s mom was the very first person to make a donation to The Fecal Transplant Foundation. When I contacted her to thank her, she said simply “I can’t stand the thought of anyone else going through what my Melissa did”.
My name is Catherine Duff.
Just like many of you, I have had several episodes of recurrent C. diff., which after my initial episode, was always caused by antibiotics for other conditions, and also became resistant to any known standardized treatment. In 2012, I realized I was going to die unless FMT worked. Many of you will be familiar with my story; the months, years really, spent lying in bed without the energy to do anything. Feeling my life slip away and being helpless to alter the outcome, and of beginning to reach the surreal point where I realized I wasn’t sure I cared anymore; I was just too tired of being sick and living, or not living, this way.
I started The Fecal Transplant Foundation as a way to reach out to other patients, physicians, clinicians, scientists, researchers, investigators, and regulatory agencies about this life saving treatment. Shortly afterward, I attended the FDA/CBER FMT Public Workshop in Bethesda, MD, on May 2nd and 3rd of this year, 2013. After realizing I was the only patient, and the only actual member of the “public” in attendance among the approximately one hundred and fifty (150) participants, I felt compelled to speak out about the impact this treatment had on my life, and could have on the millions of people not being represented there. Following my talk, many of the physicians in the audience reached out to me, and I, in turn, reached out to others, and what resulted, in a remarkably short period of time, was the assemblage of a prestigious group of leaders in the field of FMT, as well as a few others who have volunteered or been asked to help, because they all want to move the science of this treatment forward, and to make it more accessible for patients, and providers.
Below please find a copy of my remarks as they were intended to be made at the FDA/CBER FMT Public Workshop. In reality, I was crying and very emotional and unable to read the complete version of my intended remarks, but I think I hit the high points. The entire 800+ pages of the transcript of the two day workshop is available here: http://www.gompfsidpearls.net/?p=878
FDA/CBER FMT Public Workshop Remarks:
Hi. My name is Catherine Duff, and no, I’m not from around here. I seem to be the only actual member of the public present at this Public Workshop, and, at the risk of annoying those of you who are hoping to avoid a long commute, I think at least one member of the public should be heard here, and I have a brief statement.
To start, I would like to clarify that I have no affiliations with anyone or anything related to this, that I was not invited here by anyone, and none of my expenses have been paid by anyone other than myself.
I am one of the people who have called or emailed too many doctors to count. I have had 8 episodes of increasingly severe and prolonged cdiff since 2005. It is now antibiotic resistant. I began considering FMT after learning of it not from any of my team of excellent physicians, but from one of my daughters, a corporate tax attorney in DC, who loves to do research for fun.
I took our googled recipe, protocol and stack of research papers to each of my physicians. Only two had even heard of FMT, and none had performed it. These physicians, to a person, were denied permission to perform FMT by their practice partners or affiliated hospitals, respectively, citing liability concerns, without even knowing what an IND was , that is was required, or that a CPT code had been assigned.
My husband and I performed FMT by enema, at home, in March, 2012, after one of my physicians agreed to write the order for my husband’s stool test. Within 24 hours, all symptoms disappeared, and two weeks later no cdiff or toxins were detected. I remained free of cdiff until last summer. By last fall, one of my physicians had convinced his partners to allow him to perform FMT, again without knowing what an IND was or that one was needed , or that a CPT code had been assigned. Again, within 24 hours, all symptoms were gone, and I have remained asymptomatic and toxin free since. The physician’s practice has since been purchased by a healthcare system, and he is no longer allowed to perform FMTs.
People are desperate for this treatment. As doctors, clinicians, researchers, and administrators, you all know the stories of cdiff patients, but you have not lived our lives nor felt our dwindling hope and growing sense of despair and helplessness. I now wonder each and every day if I will be able to have another FMT if needed, what I will do if FMT ceases to work, and knowing what will happen to me if I encounter a different superbug.
Currently, physicians use many, many biologics. The risks are explained to, and generally accepted, by the patient. Speaking for the 100’s of thousands of others that are not represented here today, please, go forward, be bold, be courageous. Find a way to quickly, without several years of pre-clinical and clinical trials, allow qualified doctors to perform FMT with tested donors and signed consents, without fear of regulatory consequences.
If your spouse, your child, your parent, your sibling, or your best friend were dying from antibiotic resistant cdiff, I imagine you would want them to be able to try FMT. I also believe that most of you would agree to be the donor and to perform the procedure yourself, if necessary.
People are dying everyday, today, now. I have a wonderful husband, three amazing daughters, and two small grandchildren. I want to live. All of us just want a chance to live.
Please. Do something. Not only for me, but for all those around the country who have no voice, or no insurance, or no financial resources, and no hope. Please do something. Quickly.
Thank you. (End of Remarks)
If you are reading this, you have at least heard of FMT, and that gives me hope for you. My constant thoughts are on the millions of people a year, in the U.S. alone, who do not have the time, energy, support, resources, or knowledge to even find out about this treatment. Who is helping them? Where is their hope? What will happen to them, their families, their lives? Together, we can make a difference. Please join us on this path.
The Fecal Transplant Foundation