Mike’s Story

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fecal transplant for ulcerative colitis success story

 

This story, told by a father, tells of the recovery of his 17 year old son from Ulcerative Colitis using FMT.

Where do you live:

Concord, California, USA

What percentage recovery did your son achieve?

95-100%

What was the diagnosis and what treatments did you try before Fecal Microbiota Transplant (FMT)?

My 17-year-old son was diagnosed in August 2012 with Severe Ulcerative Colitis. Initial treatment was probiotics, which only helped on a limited basis. Next they stepped him up to topical steroid and Lialda. This immediately put him in remission, which we thought was the end of it. 2 months later while still on this treatment he went into a severe flare, missing 41 days of school and loosing 25lbs. He was already a very skinny kid. Our doctor was the one who introduced us to FMT, he was trying to get approval to deliver FMT for UC which was taking a long time. We went to UCSF for a second opinion in December of that year, my son was still in a severe flare and this doctor wanted to start him on Biological (Remicade) which we were trying to avoid.

We had mixed feelings and were torn on what to do. During UCSF colonscopy they took a biopsy and detected C-diff. We asked UCSF doctor “does this mean he just has C-diff” her response was “no this is text book Ulcerative Colitis, often C-diff occurs secondarily in these cases.”  He was tested 4 separate times prior to this and the tests had never detected C-diff. She immediately ordered a round of Vancomycin. The UCSF Doctor thought FMT was not looking out for the best interests of our son, so she pushed for Remicade. We took these findings to our primary Doctor and he was against starting Remicade, now that my son had C-diff he could easily get the FMT approved in the clinic. My son had a complete round of Vancomycin followed by Dficid, which ended 2 days prior to the first FMT. This helped calm his flare.

When did he have his first and last FMT treatment?

In March of 2013, my son had his first FMT via colonoscopy in our doctor’s clinic. Our Doctor was able to deliver 500ml all the way up to the small intestine. Then we followed up with 10 FMT’s at home. Then weekly FMT’s for 3 months.

How many FMT treatments did he need to see initial results and the results he has today?

He saw dramatic improvement after the first week and constantly improved each day, as of today he seems almost 100%. He is a teenager so its hard to get information from him.

Were there other perpetuating factors in his illness, or was his only issue a bacterial imbalance?

None

What maintenance is required to keep the condition in remission?

My opinion and my doctors opinion is eating probiotics everyday. Remember for 5,000 years we ate yogurts and fermented foods everyday, because this was only way to preserve foods. I just make 5lbs of fermented green beans and I will eat almost all of them. Not only do they taste good, the fermentation makes them easier to digest and vitamins and minerals more available. Eat organic living food. My son is now 18 so I have to force him to eat probiotics in whatever form I can get them in him. I think this is a big reason for his continued health after FMT.

How and when did you first hear of FMT?

Our Doctor

What factors did you take into account when deciding to do FMT?

Our choices were Remicade or FMT, we decided on FMT first if this did not work we would try Remicade.

What did your doctor/s say?

Our Doctor is a huge fan of FMT.

What criteria did you use to choose a donor?

Blood relation, ages 5-35, a good intestinal history and little use of antibiotics.

How did you approach your donor and what was that person’s response?

His cousin was more than willing to help, we paid her 20 dollars a donation she was 11 years old at the time.

What was the FMT experience like?

No worse than going to the bathroom in a chemical toilet at a campground, in fact not even that bad. We did all the prep in the garage, so my son did not even deal with it.

What was your darkest moment when you were ill? What sustained you throughout?

Watching your child suffer is very hard, doesn’t even compare to his suffering, I thank God everyday for this treatment and hope he stays in remission.

What are the top 3 things you most enjoy about his recovery?

  1. My son’s healthy
  2. My son’s healthy
  3. My son’s healthy

That’s all that matters at this point.

What advice do you have for others to deal with the fear and (perceived) risk about FMT, in the face of scepticism from treating doctors, friends and family?

Our Doctors whole treatment was based on the least invasive therapies, and move to the next big gun after the less powerful were not affective. I had a lot more fear of Remicade and Surgery than I did of FMT.

What advice do you have for someone trying to make a decision about FMT?

Follow a doctors order and prescribed procedures.

 

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Categories: fecal microbiota transplant, ulcerative colitis

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22 replies »

  1. Thanks incredibly for telling this story. I had nearly the same experience with my daughter with disastrous results because the doctor treating her had no confidence in FMT. By the time they finally agreed it was too late for her colon which had to be removed. The success stories need to be told far and wide so people aren’t suffering, and in some cases dying, unnecessarily.

  2. I am so happy for your son!

    I also have an 18-year-old but hesitate to enlist him because he is away at college and also he is my child and I had this illness when I gave birth to him. I knew to keep him away from antibiotics all of his life, even when indicated by the dentist as a preventative after his wisdom tooth

    Do you think your niece would be willing to donate to someone else? I live two towns from you and am in need of a healthy donor. Just asking.

  3. Hi. Thank you for your story!! I also have a son whose been suffering for 7 years with no improvement. We live in CA and would like to see your Doctor. We do not want to go the remicade route. Please help us by sharing your Doctors info!!!
    Thank you
    Worried Mom

  4. Hi, this is an amazing story. There are a few fMt trials going on around the world. One in Canada , Europe and one in Sydney Australia where we are. This is more accessible as it is free:

    http://clinicaltrials.gov/ct2/show/NCT01896635.

    We need people in these areas to sign up so we can prove this treatment to the wider medical community and get more doctors to get on side.

  5. Mike it is so good to read your story. We are close to the bay area and I have a brother with similar problems. Do you know the doctor who does FMT? Really appreciate it.

    Thanks

  6. Hi deborah,
    Yes our Donor might be intersted, please send me an email and we can talk about it.

    Our Doctor is Dr. Varon in concord ca, he will come up in google.

  7. I have a 16 year old son diagnosed with ulcerative colitis when he was 11. Believe it or not , not a days remission since then. He is currently on his 5th infusion of Remicade with no change. Today he goes on an average of 25-30 times a day. I need help to help his suffering. His doctor has suggested a colectomy . I have read about FMT treatment and was so encouraged to read your amazing success story .

  8. Jane,

    Its worth a try, just follow the current protocles. I hope you can end your sons sufffering.

  9. For anyone suffering from a bowel complaint such as UC, Chrons, IBS etc I suggest – Do your homework on FMT, get the gear and go for it. I am in my sixties and have had UC for 14 years and each colonoscopy showed steadily worsening condition of colon, until it was suggested I have my bowel out or try Remicade. I went for Remicade which definitely helped. but later I found out about FMT and even though my Dr was not in favour of it I went ahead and as soon as I started it I noticed an improvement. Did daily for 1 month, then week off and daily for 2nd month. Stopped for a couple of months then as I felt things could be better I changed my donor from my husband to my son. Wow what a change. it was good. My last colonoscopy showed that my bowel has NO colitis!!! and my specialist, who initially didn’t want me to stop Remicade now says it is okay to stop remicade. I am still on a maintenance dose of Mesalazine which I don’t mind, but will also look at stopping that in the future if all continues to go well.

  10. I am 71 year old male in otherwise excellent health who developed UC 2 1/2 years ago. Had initial good results with Asacol. Remission for 8 months, then WHAM! Have been getting Remicade infusions for past 1 1/2 year. Medicare supplemental plan pays all but about $725 of $13,000 infusions. I want to try FMT and hopefully get off Remicade. (a) Does Medicare cover FMT? Are there any locations in Oregon or other Western states that provide FMT treatment? Thank you.

  11. I have UC since 2011. On remicade and 6mp and not doing very well. Would like to do the FMT. Im in Northern California as well. Can you put me in touch with your Dr so that I can get this done as well?

  12. I am 43 yrs old and have had UC for ever since I can remember… I have been on steroids and all kinds of meds.. The Dr has been talking about HUmira or Remicade.. I am interested in the FMT… What I’m wondering is if you have to have C Diff bacteria in order to have the FMT done? My remissions don’t last long for me and I’m getting very tired of all of it…
    HELP

  13. In the US you need to have C diff to have doctor-assisted FMT. This does not stop a doctor screening your donor if you choose to DIY FMT.

  14. im so happy to know about ur story ….. my sister had ulcerative since 2 years .. she was on steroid &salphasalazineand recently remacide.. but unfourtnatly no benfits ..now our dr in calfornia told us about FMT . BUT we are afraid . can you tell me more details about ur dr and if i can contact him.

  15. Marian,

    Send me an email at and I will send you our doctors information

  16. Hi mike,

    Awesome story! I am a 32 yr old male and have had colitis for 10’years now, I was gonna use my nieces feces for a transplant-she is 1 and a half, think this is ok? Also, has anyone tried fecal encapsulation? Thanks!

  17. My husband was diagnosed with the onset of dementia. Would this work for him? He has problems with memory and reasoning. He is very slow and deliberate in his actions. Does this procedure actually empty the gut and replace it with fecal matter from a donor?

  18. This procedure would not be suitable for dementia. For details about FMT see About FMT and the FAQs.

  19. My 24 year old son was diagnosed at 20 with UC. He’s has flare ups and had C diff in the past. Currently trying to heal from a major flare up. His doctor said it is not approved and they wouldn’t do the transplant. I believe it is well worth a try. He has no insurance and we live in state that isn’t very progressive. I would love to figure out how to help him. Any ideas would be greatly appreciated. Thank you very much!

  20. Please join the facebook group to discuss with others in your situation.

  21. Thank you for the wonderful story about your son and FMT !
    After reading it we contacted Dr. Varon and set up an appt for our 13 yr old daughter who has UC.
    She tested positive for C. Diff and we were able on her 14 birthday to do the FMT procedure.
    We are 4 weeks post, she is doing much better. It is very easy to do at home and I highly recommend it. There are many clinical studies being done in Calif and around the country.
    Good luck

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