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:
Our daughter Emma’s symptoms appeared out-of-the blue. On Christmas Eve 2011, she called us 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. We didn’t make too much of it as 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—the salmonella culture, in addition to all the others we had done– shigella, campylobacter, Yersinia, E. coli, etc.– were negative.
Within three-and-a-half weeks of the onset of bleeding, Emma had a colonoscopy, which showed inflammation, or more specifically, friable mucosa, in her colon. She was diagnosed with IBD, and more specifically, Ulcerative Colitis (and even more specifically, proctosigmoiditis), on pathology. The good news, or so I thought, was that only her rectum and sigmoid colon were involved. The gastroenterologist thought so, too, and said Emma would have to be on Asacol for at least a year, but that it should work to control the symptoms pretty quickly. At that point, I didn’t know anything about IBD, including that it was considered an autoimmune disease whose only “cure” was a colectomy. As parents of a young child, it was devastating to discover that the only way my daughter would be cured would be by removing an entire organ, a good-size portion of her intestines. Living a life without a colon and with the very real possibility of having to wear an ostomy bag can be potentially negatively life-altering and certainly irreversible. At that point, I didn’t know how many problems can arise as a result of a j-pouch surgery, such as chronic pouchitis, which can ultimately result in an ostomy. When choosing surgery, there is no going back—once the colon is gone, it is gone forever.
To make a long story short, Asacol didn’t work. And neither did sulfasalazine, flagyl, mesalamine enemas, hydrocortisone enemas, cortifoam, canasa suppositories or prednisone. Emma was bleeding more and using the bathroom more. The entire bowl was red with blood with every bowel movement, up to 11 per day. She was starting to have abdominal pain with her bowel movements, and her knees were hurting. She was getting tired because she was anemic. She stopped running around like she used to. She was losing weight. She was sensitive to the heat. But at that point, we hadn’t hit the big guns — 6-MP, Remicade, or surgery.
In the meantime, we met with a surgeon. He told us that Emma would likely need a colectomy at some point, since usually people respond to either 5-ASAs or steroids. It was the worst appointment of our lives. We were presented with colectomy as a causal procedure to cut open a child and take her colon after not responding to a few medications—no big deal. Cut out the colon, done with ulcerative colitis—simple. Well, at that point, I knew that it wasn’t simple at all—that a colectomy can cause many problems, some at least as bad as ulcerative colitis! Emma said there was no way she was having her colon out. She said she didn’t need the surgery. We wanted to believe her, but we weren’t sure we were going to be able to beat this thing. We were adding more and more medications regularly (at one point she was on six different prescription medications—sulfasalazine, prednisone, 6-MP, allopurinol, prevacid and canasa suppositories), but she was just getting worse and worse. Her hemoglobin and hematocrit started dropping more. She was getting more and more tired and lying around the house instead of climbing trees and running around at track camp. She was looking terrible. She was waking in the night to use the bathroom and had more abdominal pain. We felt like we were losing our daughter, who just months before was one of the most active children we knew. She was so sick that she didn’t even notice how much she had slowed down. It was heartbreaking. We were grieving the illness, the lack of treatment options, and a child whose bubbly personality and active demeanor were a distant memory. We cried for our daughter every single day for over six months.
In the meantime, we did more research and looked for support from other parents whose children have IBD. FMT looked to me like the most likely treatment to help Emma. 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 Dr. 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, an eight year-old, and I was terrified of FMT making her sicker than she already was, even though nothing I read supported that fear. As parents, we want to do what will help our children lead a healthy, happy life.
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, Emma’s bleeding was getting worse than it had ever been, even though she was on five different prescription medications (we hadn’t added allopurinol yet). Her tummy was aching, her knees were hurting, and she literally had to run to the bathroom every couple of hours. The bowl was bright red with blood every time she went. On that day, 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, and we knew it could take over a month to begin working. We felt that if she didn’t get better soon, we were going to be in trouble—either Emma would have to go on Remicade, have surgery, or both. So far, we had been able to keep Emma 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 for us, and, more importantly, for Emma. As sick as she was, the last place she wanted to be was in a hospital bed, away from her home.
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 Emma, 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, and they would try to make a j-pouch. If that didn’t work, then she would have an ostomy bag for the rest of her life. This may seem like a viable solution to physicians, perhaps with a “it could be worse” or an “at least it isn’t cancer” approach; but consider, for a moment, making that irreversible and life-altering decision for someone else—for your own child.
Shortly after, we decided to try FMT, but we didn’t rush into it. Emma was metabolizing 6-MP quickly, and so we had to add allopurinol. She was doing a bit better, so I was hopeful that tinkering with the 6-MP might get her into remission. But, I got the ball rolling on getting Emma into the first U.S. clinical trial for FMT in children. I figured that we could add FMT to her medication and see if it would help. It turned out she was a good candidate for the study, but, unfortunately, the timing likely wasn’t going work out. At that point, Emma was failing 6-MP for another reason—while she was getting closer to a therapeutic level, her white cell count was dropping quickly. We were sure that her low white cell count would mean that ultimately, she would have to discontinue 6-MP even though her UC symptoms were beginning to improve. Our doctor said there was one more tinker with the dosage that we could try, but then we would have to give her Remicade.
We decided to take advantage of her improved status on 6-MP and try FMT before she had to discontinue taking it and go on Remicade. We simply did not have the luxury of time to wait the amount of time it would take to get Emma enrolled in the study and fly up to Michigan for the treatment. Fortunately, with some pushing and pleading we finally persuaded our doctors to support us in FMT (both our local doctors and our consulting doctors). We decided that I, her mother, would be her donor. I was screened for various pathogens, viruses, and parasites. I always had a good gut as far as I know, and although I had taken an antibiotic two months before beginning FMT, it didn’t seem to affect the quality of my donation.
Emma began a 10-day triple antibiotic therapy in the 10 days prior to beginning FMT. We were planning to perform FMT using a combination of a home protocol for both C. diff., the protocol from the then on-going clinical trial and some real-life information I obtained from a protocol that I purchased online, that was written by a mother who successfully treated her son with FMT. Emma’s symptoms at the time were 3-6 loose bowel movements per day with a tiny bit of bloody mucous in the bowl and blood with her wipe. From our reading, we believed that it would take more than five days of enemas to effectively treat UC, but we didn’t feel that Emma needed 30-60 consecutive days of FMT enemas to start (the 6-MP had helped her quite a bit), as the other protocol prescribed. We decided to start with 5 consecutive days and then reevaluate. If Emma wasn’t doing much better, we would continue with daily infusions, but if she had no more blood (our primary goal was to completely get rid of the blood), then we would continue doing the enemas twice per week.
Then, after conversations with another parent of a child with UC treated with FMT, we decided to stick with twice per week for at least a year. This other parent’s child had flared twice when they tried to wean him down to once-monthly infusions, and we wanted to avoid that. He encouraged us to continue with the infusions daily, but we decided twice per week was more manageable if that would keep Emma healthy.
We started FMT in August 2012, and we are still doing twice-weekly enemas, 10 months later. Within 24 hours of the first enema what little bleeding remained while on 6-MP had stopped. Notably, the day after we began FMT, we had to stop 6-MP and allopurinol because Emma’s white cell count had gotten very low. She was, however, still on 10 mg prednisone, sulfasalazine, prevacid and canasa. Within 3 months, Emma’s bowel movements reduced to 3 times daily with no blood, no pain and no mucous. She didn’t go back to 6-MP and allopurinol, and she was successfully able to wean off prednisone in September 2012 (just weeks after her first FMT enema). Throughout we have continued with sulfasalazine for no other reason than it is a relatively innocuous medication. Even though it hadn’t worked for Emma when she was very inflamed, we couldn’t be sure it wasn’t doing something as her intestines continue to heal, so in an abundance of caution, we have kept her on it.
Emma continues to do just great and her labs look awesome; all of her levels are normal. Her anemia has resolved because she is no longer bleeding, her hematocrit is back to normal, her white cell count is back to normal, her liver function is normal, and so on. The biggest improvement we saw in the labs was six months post-FMT when her calprotectin had dropped from a high of 1014 when she was flaring to 60.1. In addition, and very exciting for Emma, she went from taking six medications to one! Emma says she feels better than she ever has. She looks beautifully healthy.
We have kept up the twice-weekly FMT because we believe the intestines take a long time to heal, and because we don’t think it can hurt her. While we have faith in the treatment, we don’t want to stop it yet, either. We will do it forever if we have to. Preparing, administering, and cleaning up takes only 15 minutes total, and my daughter is in perfect health now.
When the top researchers in the country told us that the best they can do is give our child a dangerous drug that has only a 60% chance of working or they can cut out her colon, we felt it was time for us to look at other options, and FMT seemed to be the best one by a longshot. It turns out that it was our best option, and is likely the best option for other patients. Emma was sick for only seven months, but it was the worst seven months of our lives. We believe that everyone is on his or her own journey to restore health, and that there are many ways to get there. FMT was our way to restore health to our beloved daughter.
Update on Emma 10/1/13
Unfortunately, Emma had an increased calprotectin result (178) in mid-June, about 10 months after beginning FMT. I knew something wasn’t quite right since her bowel movements had increased to about 4 per day, and her poop was getting “fluffy”—it wasn’t quite diarrhea, but it was a pile of fluff in the bottom of the bowl. We decided to go ahead and repeat the five consecutive FMTs that we did when we first started, but we did it without the antibiotics. A few weeks later, her calprotectin was down to 58.3. We thought we had beat the uptick in inflammation with just repeating what we had done ten months prior. Her poop started to look better for a couple of weeks, but then it started to get fluffy again. Her calprotectin had gone up to over 300. I knew what road we were headed down, so on August 2nd, just two weeks before our one-year FMT anniversary, I wasn’t surprised when Emma told me she had some blood on her wipe. I knew it was coming like I knew the sun was going to rise the next day.
Needless to say, we were devastated—completely devastated. Our miracle was no longer our miracle. But I was certainly not going to give up on FMT since it was the only therapy that worked on her. So, we started daily FMTs. I consulted with anyone and everyone I thought could help us. We got some suggestions, and we followed them. We added some antibiotics to try to recreate the wiping out of gut flora to start over just as we did last year. Those didn’t work. We switched to another. We added prednisone (oh, boy, I didn’t want to do that again, but we were in that place again—we had to make another move). We changed donors to get a different microbiome in her. We used two donors at once to get even more diversity. Though she didn’t seem to be getting much worse, Emma certainly was not getting any better.
During the past few months, we found a new pediatrician—someone who works with children who have autism. I wanted to see her because I knew she must have experience with children with digestive problems. From what I have read, most all people with autism also have gut issues. She has been incredibly valuable. I had also wanted to meet with a nutritionist when Emma first got sick, but I couldn’t find anyone who really understood nutrition and IBD. I didn’t want to waste my time on someone who was going to tell her to eat a low fiber diet, or something like that. I needed real guidance. By all accounts we were feeding Emma well, but I knew that there had to be more we could do. And I was hopeful that FMT in addition to some nutritional guidance might help move things along for Emma. As time went on and I met other parents who have children with IBD through social media, the name of a nutritionist in NY came up a few times. I contacted him, and we made plans to fly up. It was an incredible appointment, and we went home with a plan—I love plans!
So, here we are, a few weeks out from our visit. We are continuing with daily FMTs since they certainly don’t seem to be hurting her, and we have implemented some dietary and supplemental changes. We are noticing improvement. Most of her stools are formed, and, mostly, the blood seems to be less. Admittedly, the healing process has not been linear. We have some better and some worse days, but overall, we are seeing signs of healing. I am hopeful that things continue in this direction. I am learning to be patient. We are also in the process of having an unrelated donor tested. We have built a team that I am hoping will be with us for the long term. For the first time, I feel as though we are dealing with Emma as a whole person, and not as someone who has an inflamed colon. And, for the first time since Emma got sick, I am coming to terms with the fact that this disease is not one with a switch that can be turned off and never be turned on again. I don’t know what caused this flare. I have theories, for sure, but in the end, I’m just not sure it matters. We will probably never know for sure. What matters is getting her better, and we won’t stop until she is.
If you are the parent of a child with UC and need support in making the FMT decision, Kathy is willing to help. Contact Kathy.
See the YouTube videos below for Kathy’s DIY FMT instructions and Emma’s story. Read Emma’s letter to the FDA.