Wednesday, July 27, 2016

Crohn's Disease, Acne and Fecal Microbiota Transplant In Teenager - Remission Without Medication! 27 July 2013

I have hesitated in sharing my son's story with Crohn's Disease and the success we have had with FMT (fecal microbiota transplantation) until now because I didn't want to do so prematurely.

My son is 15 years old.  To protect his privacy, I will call him Jake, although that is not his real name :-).

Jake was diagnosed with Crohn's Disease a few days before his 13th birthday.  It was widespread ulceration, inflammation and infection throughout his duodenum, terminal ileum, ascending colon, descending colon and rectum.  It was a "gut-wrenching" time for me as a mother to an only child, especially after being told how very serious this disease is, how extensively he had it, that he would have it for the rest of his life, and probably do poorly in the long-term because he was so young at diagnosis. 

I was worried sick with the long term consequences of my son taking immune-suppressive drugs (in his case, Imuran) - on the other hand I was terrified of the consequences of Crohn's Disease and felt we were between a "rock and a hard place".  I cannot begin to put into words just how heartbroken and helpless I felt, but I am sure that any parent who reads this will understand.

Professor Tom Borody was recommended to us by a family friend as being an outstanding gastroenterologist.  Unfortunately he was unable to treat Jake until he turned 14 as he was a paediatric patient, however tests he was able to order showed that Jake also had a strain of c-diff (clostridium difficile) - it was not the worst strain, but Prof. Borody felt that we needed to get rid of that first.  It was what he called a "super infective".

Within days of his 14th birthday, Jake had a gastroscopy and colonoscopy.  The Imuran had certainly helped to take care of the crohn's in his colon - however his terminal ileum was still swollen, inflamed and pussey.  His duodenum, still had some crohn's-like ulcerations.  Prof. Borody recommended FMT to kill off the c-diff and we proceeded to have suitable family members tested as potential donors.  Jake began a three week course of oral vancomycin to weaken the c-diff and then in April 2012 had his first FMT via colonoscopy- his terminal ileum was still very inflamed and swollen.  I continued to administer FMT treatments to Jake at home and his 14 year old cousin was the donor.  We also continued his Imuran.

A remarkable and unexpected bonus to having the FMT was that acne that had plagued Jake for the past year and a half had completely disappeared 7 days after treatment began.  It has never returned!!

In November of 2012 Jake had a colonoscopy and endoscopy.  To Prof. Borody's surprise, Jake's colonoscopy was perfect - the terminal ileum looked normal, as if there had never been a problem!  The only trace was one single tiny erosion in his duodenum.  There was no trace of c-diff either!

As advised, we reduced his Imuran and gradually over the next few months.  Jake was completely off his medication by March 2013, so as at the time of writing, it's been almost five months.  Jake is growing tall, his appetite is huge (perfectly normal for a healthy teenage boy) and he is putting on weight appropriately for his age.  I still do top-up FMT treatments every 3 to 4 weeks - it's difficult to know exactly when the right time to stop is - in total he has had well over 115 treatments.  Prof. Borody says that Jake needs to develop his own microbiota.  

I do not know if FMT offers a cure for crohn's disease - but I do know that there is no way my son would have been able to sustain any remission without medication prior to this as we had tried a couple of times to reduce his Imuran but both times his symptoms came back within two weeks.  What I do know is that FMT has tremendous potential for Crohn's and other diseases and definitely needs further studies.  I also have to stress the importance of stringent donor testing.

I will keep you all posted in the months ahead of Jake's progress, but thus far, as a mother, I cannot be more delighted with how well this has gone.  I am also so incredibly thankful for Prof. Tom Borody for being one of those scientists who dares to think "outside the box".  It is because of doctors like him that medicine advances instead of remaining stagnant.  It is because of him that Jake's future is looking good instead of bleak and that I can cry tears of happiness and gratitude instead of despair.


(Please click here to read part 2 of "Jake's" Story - November 2013 (One year later) - Colonoscopy/Gastroscopy showing no sign of Crohn's Disease whatsoever - NOT even in his duodenum!)

17 comments:

  1. I would to talk with the author of this post, please have them contact me.

    I run website and facebook page on alternative treatments for IBDs. I was diagnosed w/ Crohn's in 1997 at the age of 17.

    I am also editing a documentary, where I cover one person who has used MT for his ulcerative colitis. Feel free to contact me at info-at-CrohnsEnd.com. Thanks.

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  2. you stated "I still do top-up FMT treatments every 3 to 4 weeks - it's difficult to know exactly when the right time to stop is - in total he has had well over 115 treatments." Can you describe what a 'top-up' FMT treatment is? I have had an FMT via traditional colonoscopy, but I assume this is something you are doing at home? If so, please explain in detail. Thank you.

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    1. My son had his first FMT done by Prof. Borody via colonoscope. There is an FMT protocol for patients to follow at home which involves blending the donor stool in a blender with saline solution. (I bought a special one just for this purpose ;-) ).
      I blend for around a minute and make sure the consistency is similar to that of a milkshake. I use an empty fleet enema bottle which I rinse with normal saline solution. I then use a small strainer and funnel and strain the contents through the funnel into the fleet enema bottle.

      Of course I also use disposable gloves and facemask as this is biological matter - it's also not the most pleasant smell!!

      I make sure my son is placed on his left hand side with his bottom elevated and gently squeeze the fecal solution of lubricated bottle until virtually empty. It's about quality, not quantity and I find that one bottle is definitely enough - it also makes it easier for him to retain for the 6 hours.

      He then rubs his belly to try to gently force the solution upwards into his descending colon, then he lays on his back, still with his bottom elevated and gently massages it across his transverse colon - the aim is to spread it as far as possible. He then lays back for at least 15 minutes in a recliner.

      I rinse the equipment so it doesn't have visible traces of feces and then soak the equipment in hot soapy water (it's important that the dishwashing liquid is NOT anti-bacterial as that can kill the good microbiota in future treatments. I rinse each piece again in water to remove any soapy residue and let it all air-dry over a "tea towel".

      When I started doing the treatments, I was doing them every day for the first month, then every second day for the next month, then probably two or three times a week for quite a few months. By eight months it was once a week or two and now I do it every 3 to 4 weeks. The goal was originally to kill the c-diff and see if the crohn's regressed - it was all going so well, I couldn't stop and I had read a news article on Sky Curtis's son with severe fistulating crohn's disease who did this treatment and is now considered cured and the key was to keep on going with the treatment (crohn's seems to be much more stubborn than UC) - the colonoscopy he had in November was amazing - his terminal ileum looked perfect!

      Hope this information helps you! There are some excellent resources here: http://thepowerofpoop.com/epatients/fecal-transplant-instructions/

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    2. What kind of soap did you use??? I am starting this process in a few days.
      Thanks for this post. Extremely helpful. God bless!!

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    3. Glad I could help!

      I just use any dishwashing detergent that is not antibacterial. I am not sure what is available in the USA (I assume that is where you are from), I am in Australia.

      Some people just use hot water. My first blender was no good as I couldn't pull it apart to clean it but the one I have now, I can take apart - that makes the cleaning process much quicker.

      Would love to hear how you get on with this down the track. Do you have Crohn's?

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    4. Thank you for sharing your story. We have been using FMT via enema to treat my daughter's UC since last August--we started with 5 days, then we continued twice weekly enemas. It was the only treatment that got her into remission--she was on 6mp when we began FMT, but we had to take her off of it because her white cell count got too low. She recently had an elevated calprotectin (178), but we were able to get it down to 58 by doing 5 consecutive FMTs. I am not sure when we will stop FMT--it may not be for a very, very long time, if ever. Our story is on The Power of Poop. I hope we get a chance to connect at some point. Best of luck to you and your son. I know how amazing it feels to have found something that is working for your child. I hope your son continues to thrive.

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    5. Thank you Kathy for sharing your daughter's story. I actually posted it in March this year as being a mother of a child with IBD, it touched me tremendously. http://www.fecalmicrobiotatransplant.com/2013/03/fmt-success-story-for-pediatric-uc.html

      It's amazing what persistence can do - it definitely makes a difference keeping up the FMT treatment as opposed to stopping after a few days, and I think that this is the problem with some of the studies being done, they are only done in a hospital setting for five or so infusions. The results will definitely not be the same as those of us who have done this over a long time and not given up.

      Also, as Prof. Borody has said, it seems that the stool of the donor is key. More research has to be done in that area ie. what is in the stool of a successful donor - is it something common, or is it something unusual? You can contact me at info at fecalmicrobiotatransplant dot com.

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  3. Please continue to keep us updated.

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  4. I'm glad Jake is better. Did you work with diet? I have been able to manage my symptoms by living on the basic SCD diet of meat and fat.

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    1. That's a very good question and there is no doubt the SCD diet will help many. Jake however is only 15 and it's crucial that he receives a high calorie diet from a variety of foods - carbohydrates are important in keeping his calorie intake up. He doesn't indulge too much in sweets, but then he never really has.

      The teenage years are so important in the development of all aspects of their bodies so going on a diet that is restrictive in that sense would not have been the best option, although one I am sure we would have taken if FMT hadn't been so successful.

      He seems to be absorbing the nutrients from the foods he eats - his blood tests are perfect and he is putting on weight appropriately as he grows! Incidently, his skin is still clear and free from acne with no changes to his diet.

      It's great to know there are other options out there! Hope you continue to do well - it's such an awful disease and great to hear positive stories of those who have been able to successfully tackle it :-)

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  5. This sounds like awesome news! If I may ask though, how was this posted in year 2016?

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    1. Very perceptive ;-) - I was trying to make it a sticky post in blogger, however they don't seem to have that facility and I didn't want the story automatically archived by blogger just yet. I did a little research and it was suggested that moving the date forward will keep the post at the top. The actual year of the post is this year, 2013.

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  6. Thanks for sharing! I am going to attempt this with my husband. He is allergic to all the medicines we tried. He has ulcerative colitis. He's gone through two gastroentorologists and we are waiting to meet the third one in January. The two previous docs gave up!

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    1. My best wishes to you and your husband! Just make sure you (or any prospective donor) is tested prior to donation. Would love to know how he goes with this!

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  7. Thank you for sharing. One of my nephews was diagnosed with Crohn's Disease a few years ago and he had already two surgeries. However, nothing has been changes. We heard about the FMT recently and we started to collect information as much as we could. I appreciate it if you may please share with me the doctor’s contact information.

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  8. Do not hesitate...do the treatment ...it works so dam well regards Paul.

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