This is a video which aired on TV - great news for pediatric (child) patients with c-diff
Wednesday, March 27, 2013
FMT Success Story For Pediatric UC Patient!
This story comes from a mother who posted as a visitor on http://thepowerofpoo.blogspot.com.au/ - it's a very powerful story showing the tremendous results that FMT can give to a IBD sufferer (a child). It's definitely worth reading!
Kathy's Success Story
"Hi, I’m Kathy, mom to a nine-year-old girl diagnosed with Ulcerative Colitis in January 2012 and successfully treated with FMT. I don't want to know where we would be now if we hadn't tried it, or if it hadn’t worked. We went through seven months of hell trying to get her better before we started FMT. Here’s our story:
E's symptoms appeared out-of-the blue. On Christmas Eve 2011, she called me into the bathroom to look at her wipe, which had some blood on it. Over the next few days, we noticed that her stool, though completely formed, had some visible blood coating the outside of it. I didn't make too much of it, which is surprising since I tend to be a bit of an alarmist when anything seems out of the ordinary. I thought that she had picked up salmonella after playing with a lizard in the yard and that the blood would resolve, and we would move on with our lives. I was totally wrong.
Within three-and-a-half weeks of the onset of bleeding, E had a colonoscopy, which showed inflammation in her colon. E was diagnosed with IBD, and more specifically, Ulcerative Colitis (and even more specifically, proctosigmoiditis). The good news, or so I thought, was that only her rectum and sigmoid colon were involved. The doctor thought so, too and said E would have to be on Asacol for at least a year, but that it should work to control the symptoms. At that point, I didn’t know anything about IBD, including that it was considered an autoimmune disease whose only “cure” was a colectomy. Yikes.
Well, Asacol didn’t work. And neither did sulfasalazine, flagyl, prednisone, mesalamine enemas, hydrocortisone enemas, cortifoam and canasa suppositories. What?!?! How could that be? Well, apparently, there are cases of UC that are refractory, or not responsive to medication. But, at that point, we hadn’t hit the big guns yet — 6-MP or Remicade, so we weren’t there yet.
In the meantime, we met with a surgeon. He told us that E might need a colectomy. It was the worst appointment of our lives. He wasn’t nice or compassionate. It seemed like he just wanted to cut open my kid and take her colon—no big deal. E said there was no way she was having her colon out. She said she didn’t need the surgery. I wanted to believe her, but I wasn’t sure we were going to be able to beat this thing. With more and more meds, she was just getting worse and worse as time went on. Her hemoglobin and hematocrit started dropping. She was getting more and more tired and lying around the house instead of climbing trees and running around. She was looking terrible. She was waking in the night to use the bathroom. I felt like I was losing my daughter.
I had been frantically doing research all along, searching for alternative things to try. We tried various supplements—bovine colostrum, homeopathic phosphorus, turmeric, fish oil, cod liver oil, vitamin D, VSL, Chinese herbs— acupuncture, and two diets—SCD/paleo/GAPS (though admittedly we only followed it about 90%) and Jini Patel’s “stop intestinal bleeding diet”. I first heard of FMT from a good friend of mine before E was even diagnosed with UC, when the bleeding had first started. I remember being so afraid to try it. I didn’t want to put anything in her rectum or colon for fear of making things worse. I couldn’t bear the thought of hurting my daughter more than she was already hurting. And I always thought poop was kind of dirty — I mean, we wash our hands after we use the bathroom, after all. Our doctors didn't know anything about it and pretty much changed the subject when I brought it up at appointments. So, I went ahead and purchased a home FMT protocol online.
Then, I researched more and looked for support from other parents whose children have IBD. FMT looked to me like the most likely treatment to help E. I learned that people were doing FMT for UC and were being helped by it, but many were doing it without support from their doctors. I knew Borody’s research, I read about the Bright Clinic in Oregon, and I was in touch with someone who had successfully done FMT for his seven-year-old son. I read countless IBD forums. I learned that healthy stool is full of healthy bacteria and that if put into the colon of a person with UC, the bacteria would recolonize in the sick person’s colon and help it heal by restoring the balance of bacteria that was likely out of balance. But, I was wary about doing FMT without the support of our doctors. We were dealing with a child, and I was terrified that if I tried something like putting someone else’s poop into my daughter’s colon and she got sicker, I would get in some serious trouble.
In April 2012, we had plans to travel 1000 miles for a second opinion at one of the top pediatric IBD centers in the country. The day before we left, E’s bleeding was getting worse and worse. Her tummy was aching, her knees were hurting, and she literally had to run to the bathroom every couple of hours. The bowl was red every time she went. I was a mess. We decided to give 6-MP a try, since our doctor at home assured us that our second opinion would give us the same advice. I felt that if she didn’t get better soon, we were going to be in trouble. So far, we had been able to keep E out of the hospital, but just barely. Every few days we were talking with the doctor, deciding whether to hospitalize her or try to keep her home. It was torture.
At our second opinion appointment, the doctor confirmed what our doctor had said, but he also had statistics. There was a 50% chance that 6-MP would work for E, and a 60% chance that Remicade would (and even if Remicade worked, there was no guarantee it’d work forever). And that was the end of the road. If neither of those medications worked, her colon would have to be removed.
Shortly after, we decided to try FMT. I got the ball rolling on getting E into the first U.S. clinical trial for FMT in children. It turned out she was a good candidate. Unfortunately, the timing didn’t work out. We could tell by her blood work that she wouldn't be likely to stay on 6-MP even though her symptoms had improved quite a bit. In the end, we decided to take advantage of her improved status on 6-MP and try FMT before she had to discontinue it.
Fortunately, with some pushing and pleading we finally persuaded our doctors to support us in FMT. They gave us a protocol (it was the protocol for C. Diff written by Silverman) and a list of blood and stool tests for the donor to have done. We wanted a donor with good digestive and overall health. My husband has IBS, so he was out. I have always had a good gut as far as I know, but I still had all the tests to make sure there were no hidden problems. Two months prior to my first donation I was on antibiotics, but it doesn’t seem to have affected the quality of my donation.
We started FMT in August last year. We began with a 10 day triple antibiotic therapy followed by 5 consecutive days of FMT, followed by twice-weekly FMT. Within 24 hours of the first enema what little bleeding there was had stopped. Within 3 months, E’s bowel movements reduced to 2-3 times daily. Throughout we have continued with sulfasalazine and FMT twice a week. E continues to do just great and her labs look awesome. The biggest improvement we saw in the labs was six months post-FMT when her calprotecin had dropped from a high of 1014 when she was flaring to her current level of 60.1.
It’s now seven months since we started FMT and E is 90% better. We are still doing FMT twice weekly and E still has some minimal food restrictions, which is why I don't say she is 100% better. She says she feels better than she ever has. She looks beautifully healthy. We have kept up the FMT because we believe the intestines take a long time to heal, and because we don't think it can hurt. While we have faith in the treatment, we don’t want to stop it yet, either.
My advice for people considering FMT is to talk to others who have done it and to try to find a doctor who will support you, if that’s important to you. After doing all the research I did, I felt very confident in the potential of FMT and strongly believed that we had nothing to lose by trying it. When the top researchers in the country told us that the best they can do is give your child a dangerous drug that has a 60% chance of working or they can cut out her colon, which has countless potential complications, I felt it was time for us to look at other options, and FMT seemed to be the best one by a longshot.
My daughter was only sick for seven months, but it was the worst seven months of my life. I cried every day for six of those months. People kept telling me that she would get better, but I stopped believing them. But then, we fixed her. WE brought her back to health! And now our doctors are trying the treatment on other patients, and a family member who is in pediatric gastroenterology convinced her boss to try FMT on patients (they have done two so far!) There is no greater feeling than, even in some little way, to help someone regain the health of his or her child. What a roller coaster it has been — we went from feeling completely lost and scared to feeling like we can point people in the right direction and optimistic that our daughter is going to remain well.
The best advice I can give someone trying to make a decision about FMT is that you will know if and when it is time for you to do FMT. Nobody can make the choice for you. We are all on our own journeys and have to find our own paths. There are many ways to wellness, and FMT may be yours. There are people out there doing it and doctors are starting to do it. But, these things are slow to get going in the medical field, and sometimes time is not on your side. It certainly wasn’t for us — we just did our research and did what we felt we needed to do for our child, and FMT was it. While it can be overwhelming at first, the prep is easy and the administration is even easier. I would do FMT every day for the rest of my life if that is what we needed to do."
If you are the parent of a child with UC and need support in making the FMT decision, Kathy is willing to help. Please visit http://thepowerofpoo.blogspot.com.au/ and the blogger, Tracy can send your details to Kathy so that she can contact you.
Kathy's Success Story
"Hi, I’m Kathy, mom to a nine-year-old girl diagnosed with Ulcerative Colitis in January 2012 and successfully treated with FMT. I don't want to know where we would be now if we hadn't tried it, or if it hadn’t worked. We went through seven months of hell trying to get her better before we started FMT. Here’s our story:
E's symptoms appeared out-of-the blue. On Christmas Eve 2011, she called me into the bathroom to look at her wipe, which had some blood on it. Over the next few days, we noticed that her stool, though completely formed, had some visible blood coating the outside of it. I didn't make too much of it, which is surprising since I tend to be a bit of an alarmist when anything seems out of the ordinary. I thought that she had picked up salmonella after playing with a lizard in the yard and that the blood would resolve, and we would move on with our lives. I was totally wrong.
Within three-and-a-half weeks of the onset of bleeding, E had a colonoscopy, which showed inflammation in her colon. E was diagnosed with IBD, and more specifically, Ulcerative Colitis (and even more specifically, proctosigmoiditis). The good news, or so I thought, was that only her rectum and sigmoid colon were involved. The doctor thought so, too and said E would have to be on Asacol for at least a year, but that it should work to control the symptoms. At that point, I didn’t know anything about IBD, including that it was considered an autoimmune disease whose only “cure” was a colectomy. Yikes.
Well, Asacol didn’t work. And neither did sulfasalazine, flagyl, prednisone, mesalamine enemas, hydrocortisone enemas, cortifoam and canasa suppositories. What?!?! How could that be? Well, apparently, there are cases of UC that are refractory, or not responsive to medication. But, at that point, we hadn’t hit the big guns yet — 6-MP or Remicade, so we weren’t there yet.
In the meantime, we met with a surgeon. He told us that E might need a colectomy. It was the worst appointment of our lives. He wasn’t nice or compassionate. It seemed like he just wanted to cut open my kid and take her colon—no big deal. E said there was no way she was having her colon out. She said she didn’t need the surgery. I wanted to believe her, but I wasn’t sure we were going to be able to beat this thing. With more and more meds, she was just getting worse and worse as time went on. Her hemoglobin and hematocrit started dropping. She was getting more and more tired and lying around the house instead of climbing trees and running around. She was looking terrible. She was waking in the night to use the bathroom. I felt like I was losing my daughter.
I had been frantically doing research all along, searching for alternative things to try. We tried various supplements—bovine colostrum, homeopathic phosphorus, turmeric, fish oil, cod liver oil, vitamin D, VSL, Chinese herbs— acupuncture, and two diets—SCD/paleo/GAPS (though admittedly we only followed it about 90%) and Jini Patel’s “stop intestinal bleeding diet”. I first heard of FMT from a good friend of mine before E was even diagnosed with UC, when the bleeding had first started. I remember being so afraid to try it. I didn’t want to put anything in her rectum or colon for fear of making things worse. I couldn’t bear the thought of hurting my daughter more than she was already hurting. And I always thought poop was kind of dirty — I mean, we wash our hands after we use the bathroom, after all. Our doctors didn't know anything about it and pretty much changed the subject when I brought it up at appointments. So, I went ahead and purchased a home FMT protocol online.
Then, I researched more and looked for support from other parents whose children have IBD. FMT looked to me like the most likely treatment to help E. I learned that people were doing FMT for UC and were being helped by it, but many were doing it without support from their doctors. I knew Borody’s research, I read about the Bright Clinic in Oregon, and I was in touch with someone who had successfully done FMT for his seven-year-old son. I read countless IBD forums. I learned that healthy stool is full of healthy bacteria and that if put into the colon of a person with UC, the bacteria would recolonize in the sick person’s colon and help it heal by restoring the balance of bacteria that was likely out of balance. But, I was wary about doing FMT without the support of our doctors. We were dealing with a child, and I was terrified that if I tried something like putting someone else’s poop into my daughter’s colon and she got sicker, I would get in some serious trouble.
In April 2012, we had plans to travel 1000 miles for a second opinion at one of the top pediatric IBD centers in the country. The day before we left, E’s bleeding was getting worse and worse. Her tummy was aching, her knees were hurting, and she literally had to run to the bathroom every couple of hours. The bowl was red every time she went. I was a mess. We decided to give 6-MP a try, since our doctor at home assured us that our second opinion would give us the same advice. I felt that if she didn’t get better soon, we were going to be in trouble. So far, we had been able to keep E out of the hospital, but just barely. Every few days we were talking with the doctor, deciding whether to hospitalize her or try to keep her home. It was torture.
At our second opinion appointment, the doctor confirmed what our doctor had said, but he also had statistics. There was a 50% chance that 6-MP would work for E, and a 60% chance that Remicade would (and even if Remicade worked, there was no guarantee it’d work forever). And that was the end of the road. If neither of those medications worked, her colon would have to be removed.
Shortly after, we decided to try FMT. I got the ball rolling on getting E into the first U.S. clinical trial for FMT in children. It turned out she was a good candidate. Unfortunately, the timing didn’t work out. We could tell by her blood work that she wouldn't be likely to stay on 6-MP even though her symptoms had improved quite a bit. In the end, we decided to take advantage of her improved status on 6-MP and try FMT before she had to discontinue it.
Fortunately, with some pushing and pleading we finally persuaded our doctors to support us in FMT. They gave us a protocol (it was the protocol for C. Diff written by Silverman) and a list of blood and stool tests for the donor to have done. We wanted a donor with good digestive and overall health. My husband has IBS, so he was out. I have always had a good gut as far as I know, but I still had all the tests to make sure there were no hidden problems. Two months prior to my first donation I was on antibiotics, but it doesn’t seem to have affected the quality of my donation.
We started FMT in August last year. We began with a 10 day triple antibiotic therapy followed by 5 consecutive days of FMT, followed by twice-weekly FMT. Within 24 hours of the first enema what little bleeding there was had stopped. Within 3 months, E’s bowel movements reduced to 2-3 times daily. Throughout we have continued with sulfasalazine and FMT twice a week. E continues to do just great and her labs look awesome. The biggest improvement we saw in the labs was six months post-FMT when her calprotecin had dropped from a high of 1014 when she was flaring to her current level of 60.1.
It’s now seven months since we started FMT and E is 90% better. We are still doing FMT twice weekly and E still has some minimal food restrictions, which is why I don't say she is 100% better. She says she feels better than she ever has. She looks beautifully healthy. We have kept up the FMT because we believe the intestines take a long time to heal, and because we don't think it can hurt. While we have faith in the treatment, we don’t want to stop it yet, either.
My advice for people considering FMT is to talk to others who have done it and to try to find a doctor who will support you, if that’s important to you. After doing all the research I did, I felt very confident in the potential of FMT and strongly believed that we had nothing to lose by trying it. When the top researchers in the country told us that the best they can do is give your child a dangerous drug that has a 60% chance of working or they can cut out her colon, which has countless potential complications, I felt it was time for us to look at other options, and FMT seemed to be the best one by a longshot.
My daughter was only sick for seven months, but it was the worst seven months of my life. I cried every day for six of those months. People kept telling me that she would get better, but I stopped believing them. But then, we fixed her. WE brought her back to health! And now our doctors are trying the treatment on other patients, and a family member who is in pediatric gastroenterology convinced her boss to try FMT on patients (they have done two so far!) There is no greater feeling than, even in some little way, to help someone regain the health of his or her child. What a roller coaster it has been — we went from feeling completely lost and scared to feeling like we can point people in the right direction and optimistic that our daughter is going to remain well.
The best advice I can give someone trying to make a decision about FMT is that you will know if and when it is time for you to do FMT. Nobody can make the choice for you. We are all on our own journeys and have to find our own paths. There are many ways to wellness, and FMT may be yours. There are people out there doing it and doctors are starting to do it. But, these things are slow to get going in the medical field, and sometimes time is not on your side. It certainly wasn’t for us — we just did our research and did what we felt we needed to do for our child, and FMT was it. While it can be overwhelming at first, the prep is easy and the administration is even easier. I would do FMT every day for the rest of my life if that is what we needed to do."
If you are the parent of a child with UC and need support in making the FMT decision, Kathy is willing to help. Please visit http://thepowerofpoo.blogspot.com.au/ and the blogger, Tracy can send your details to Kathy so that she can contact you.
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