This is an FMT or bacteriotherapy (I like that word better!) success story. I’m going to try to make this concise, with the important points included, but we all know that this is an emotionally draining, stressful, tiring, socially awkward, scary circumstance, and our entire family experienced a plethora of all these emotions. It has truly changed us forever.
After 3 rounds of back to back antibiotics and a round of steroids to fight a resistant strep infection in spring ’13, our daughter Kate (8th grade) had sudden and violent onset of stomach pain, bloating, gas, urgency and of course, bloody diarrhea. Up to this point in her 14 years, she had never had any major complaints regarding digestion. In May ’13 we got the diagnoses of UC with instructions from the doc to take her apriso every day and come see him every year for a colonoscopy. He could not even determine if she had Crohn’s, but said it “doesn’t look like it.”
He made it sound so simple and normal and that we shouldn’t worry in the least. My husband and I looked at each other with pain, fear and complete disbelief in both our faces… then looked at our athletic daughter… knowing our lives were about to be derailed. I thank God every day that those meds didn’t agree with her or we may never have sought alternative methods.
After 2 failed attempts at a 5-asa, both of which made her feel worse and increased urgency, we went to nutritionist #1. She recommended a diet of bland foods, the basic western diet. White bread, rice, pasta, only well-cooked vegetables, and very few of them. We left feeling great! Even though I knew it didn’t sound right, I thought well, maybe she is different and this is what her body needs now. And she did feel better for a while that summer.
When her freshman year of high school began, symptoms came back with a vengeance. I suspect stress and poor diet choices at school triggered the flare. In January ’14 we took her to the Mayo clinic for full diagnostics. The doctor performing the colonoscopy said she was so inflamed he was nervous about scoping her. He briefly mentioned biologics, but we were meeting with her main doctor the next day and he could tell us for sure. Her gastroenterologist prescribed Uceris and 6-MP.
At least he was able to confirm she did not have Crohn’s. I should mention that my husband took Kate to Minneapolis. We both knew he was stronger mentally to handle all the tests and be there for her. I had made many trips to the school that fall to take Kate clean underwear and jeans, and was in a bit of a downward spiral.
When they got home we had many discussions about the meds. We decided to go ahead with Uceris, but hold off on 6-MP. She was 15. We felt this was such a strong med with a very scary list of side effects, and she was so young… There was more research to do. After a few months of Uceris, symptoms were slightly better, but she had become anemic due to heavy menstrual flow (this is a side effect of the drug). She was always tired, and painfully thin and pale. Another med fail.
I had been reading about a doctor in Seattle that does comprehensive blood and stool screening, and makes diet, supplement and probiotic recommendations. I had read his book (along with many others and hundreds of articles on this subject… I basically had a new job) and I talked to them on the phone. Kate had a volleyball tournament in Reno the next month (somehow she was still playing) so we took an extra day and went to Seattle. About a month later we got all the results. Kate was basically allergic to everything except a few fruits and vegetables, and stool results showed an alarming lack of good bacteria. This is where our lives took a turn for the better.
I learned to cook. There were about 10 things Kate could eat, and I made those 10 things every possible way that summer and fall. She was gluten, dairy (butter was ok), soy and sugar free. Except for organic maple syrup on her GF pancakes every morning, she was diligent! And she started to get better. She still had a lot of gas, bloating and diarrhea, but blood and urgency were finally calming down, as well as fewer trips to the bathroom.
It’s important to mention that I have spent hundreds, no… thousands of dollars on supplements and probiotics that didn’t work. I took her to a therapist because I felt she was depressed. We saw a naturopath, who turned us on to peppermint oil for gas, but that’s about it. We tried the SCD and fodmap diets, strictly and diligently for about 6 weeks each. And my husband and I read and studied tirelessly to find out what we were missing. And in spring of ’14 we found it, but weren’t quite ready to act on it. More research…
We went through most of Kate’s sophomore year about the same. A little better, but not getting worse. Finally, last February I said “let’s just do this!” My husband had felt this was the answer all along so he was on board. I felt like we could either keep going along like this for years, or we could take a chance and possibly change her life and heal her.
We have another daughter who was 14 at the time. The three of us (mom, dad and little sister) had extensive stool testing done through our naturopath. We decided sis was the best match with high counts of good bacteria, excellent health, and she was also very regular, which helps! So we read every FMT protocol we could find, and put one together that worked for us. We decided to do one every night for 10-14 days, depending on how things were going. Our theory was to get as much good stuff in there as possible in a short amount of time, because we were traveling a lot at the time for volleyball. We would follow up as needed depending on symptoms.
**Side note – you may wonder how she was able to travel and play… Every airport included numerous trips to the bathroom, many from the security line with me just hoping she made it back quickly. There were also several urgency incidents in the car in strange cities, one in the barren area between Chicago and Indianapolis. We both cried in silence for the next 20 miles till we reached a bathroom. Somehow, she never really had to leave the volleyball court, but she missed a lot of warmup time.
Spring break of ’15 the true healing began! Kate was able to do enemas 10 nights over 2 weeks, holding it for times varying from 20 minutes to all night. I blended it up downstairs, and she would come get the enema bottle and take it upstairs. She’s 16 by this time. She would put the liquid in, move around in all directions, lay on each side for 10 minutes, even stand on her head some. And then we got busy with traveling and forgot about it for awhile. In April things slowly got a little better.
In May and June, things started really looking up. No diarrhea at this point and she hadn’t had blood in a few months. Still some gas and bloating and slight pain at the very end when she went to the bathroom. Since her bm’s were becoming more formed, we suspected she had some inflammation at the very end of the colon and this was causing the pain.
Around this time, we had heard of a GI in our area who may be open-minded about bacteriotherapy, so we made an appointment to see about getting a steroid enema to help her with this inflammation. We weren’t expecting full support, but were just hoping not to get laughed at or scorned. When we told her Kate had done FMT, she was very kind, but looked a little shocked. She agreed that the steroid was in order and prescribed it for her, along with blood tests to measure inflammation, which showed her inflammatory markers had decreased significantly since the Mayo visit. She looked at us and said “you know I can’t really condone or help with FMT therapy…” but she had a smile on her face as if to say that she wished she could.
Ironically, Kate had a severe respiratory virus at this time and was prescribed oral steroids at the ER. She never had to use the enema because the oral steroids took care of the last bit of inflammation. By mid summer, Kate felt great! She had started going out with friends and being social again, something she hadn’t done much of the previous 2 years because she didn’t trust her body. She was gaining weight and getting stronger! (She had lost 15 pounds or so on a 5’10” 130# frame).
Now, Kate’s junior year is in full-swing and she is symptom-free! She is stronger than she’s ever been and getting stronger. She weighs a healthy 135. She is strictly gluten-free (and probably always will be) and dairy free except for butter. We have been able to add back so many fruits and vegetables that were strictly off limits to her diet.
Most importantly, we have our happy-go-lucky kid back! We lost her for a while. She didn’t smile, didn’t talk. Now she bounces down the stairs with her cheery “good morning” and a big smile. She feels good again and it shows.
Our family is getting back to normal now, but we are changed forever. We have all learned so much… About medicine, about NATURAL medicine, and about ourselves. I know that everyone’s circumstance is different, and this may not work for everyone. But it DOES work for some, and probably many.
I have learned so much from all the wonderful people on this page! I never posted or commented, but I read every day, and this was one of the groups that gave me the courage to say “let’s just do it!” Thank you!!!
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