Fecal Microbiota Transplants (FMT) Study Via Colonoscopy

I recently participated in a medical study at the University of Washington Digestive Disease Center that may be interesting to other people diagnosed with Ulcerative Colitis. Dr. Zisman is conducting a study using fecal microbiota transplants (FMT) via colonoscopy. The study is limited to 10 participants and when I last checked they were still enrolling patients.

Participants must meet certain criteria and there is a screening process for fecal donors. Patients may not be in remission, on biologic therapy, or be using probiotics. There may be other criteria for participation and there may some costs to participate in the study.

I have had UC for 40 years and was eager to participate in the study for both personal and altruistic reasons. I was happy to add data to the growing therapeutic options available to people with UC. I found Dr. Zisman and his research team to be professional, knowledgeable, and kind. The procedure itself, from a patients perspective, is just a colonoscopy. I have agreed to continue with some follow up screenings.

It has been about 4 weeks since I had the transplant and I have been asymptomatic since the procedure. I feel better then I have in years and am cautiously optimistic about my future health. This is such a confounding disease and I have learned so much from other patients. I hope other people with UC will find my experience helpful too.

J





45 Responses to “Fecal Microbiota Transplants (FMT) Study Via Colonoscopy”

  1. AdamJanuary 8, 2013 at 6:10 am #

    Hey J,

    thanks again so much for sharing the info, and definitely, please please keep us updated as to how things go for you in the future. It would be awesome to hear how you’re feeling in a few more months! And I hope your success continues for a very long time!

    -Adam

    • jFebruary 1, 2013 at 4:52 pm #

      Dear Adam,

      It has been almost two months since I had the fecal transplant and I am happy to report that I continue to be asymptomatic. I feel wonderful and am so appreciative of the efforts of the doctors and staff at the University of Washington Digestive Disease department. I believe that there are still opportunities for others in the greater Seattle area to participate in Dr. Zisman’s study.

      Believe it or not, I have started running-that’s how good I feel. I am 61 years old and feel like I am 16. I have had UC since I was in my early 20′s and I can’t remember having so much energy and feeling so well. I sure hope this continues.

      I will keep you all up to date on my progress.

      • JFebruary 16, 2013 at 3:00 pm #

        Dear Adam and fellow UC folks,

        Well, my lovely remission from UC has ended this week. I am experiencing a flare. I have no regrets about participating in the FMT study at the University of Washington as I was able to enjoy the period of remission. I am hopeful that any of the information gained in the study will be useful for researchers and of course helpful to those of us with this bloody disease.

        All we can do is keep trying…Wishing you all better health.

        • RSNFebruary 21, 2013 at 10:51 am #

          hello j, thank you for sharing- I am encouraged. I too am participating in the same UWMC study with Dr. Zisman who I absolutely respect and love. unfortunately the Supreme FDA (with I am sure the support of some strong pharma lobbyists) have stepped in and said that they need to control how the study goes and how the FMT is conveyed. In their mind, they consider the human stool a DRUG!!!!!! Go figure.. so my future appt is on hold for now.
          Its interesting that FMT has been used for years in Canada to treat C-Diff infections consistently with 100% success and I was encouraged by this.
          Also I would appreciate any sharing on how you managed your diet and lifestyle-any changes through the study at all? stress levels etc. asking trying to figure out what may have been contributing factors to the re-flare. I am also a strong proponent and have been including a lot of alternative energy medicine work and acupuncture /BodyTalk etc. into my treatment modality to help control and balance as well as I cannot bring myself to do the Remicaid infusions and had a threatning reaction to the Azathioprine.

        • RJWFebruary 23, 2013 at 12:42 pm #

          J,

          How are you doing? When you got your original FMT did you have to cleanse first and take anti-biotics?
          After your FMT did they do any follow-ups FMT via enemas? Thanks for you previous update.

          • JFebruary 23, 2013 at 1:45 pm #

            I took the typical prep meds for a colonoscopy. No antibiotics and no follow up transplants.

        • RJWFebruary 23, 2013 at 2:01 pm #

          Is the study going to do anything more for you? Are you going to keep doing at home like Adam did with FMT enemas? I believe it was your husband donor). Maybe it took and grew but not enough? I am new to the FMT process so just saying maybe this and that. Also was your husband check for blood type match like one of the discussion groups was talking about could be important? Anyway my best to you I want you to succeed.

          • JFebruary 24, 2013 at 11:48 am #

            Donor was screened for a variety of infectious diseases. To my knowledge blood type is irrelevant as this is not a blood transfusion.

        • GeorgiannaApril 27, 2013 at 7:33 am #

          Hi J,
          I think you should try the FMT’s once again… I’ve read that it takes sometimes up to two weeks of the transplants before the good bacteria in there will really take hold. Look into calling Dr. Mark Davis in Portland, OR and setting up an appt (over the phone if you’d like)with him and he will walk you through how to do the enema transplants from home. I am getting ready to do this. He recommeds doing it for at least 10 days.
          Another thing is, when you start feeling great again try not to push yourself too hard, give your body time to recover fully no matter how energetic you are feeling. You said you started jogging, and then you ended up having a flare afterwards. The reason why I say this is that I noticed a correlation between me working out as soon as I started feeling better, and then immediately going back into a flare. I think our bodies just need more time to fully recover and are immunocompromised.
          Here is the link to Dr. Davis’s info: http://fecalmicrobiotatransplantation.com/FMT/home.html

          In addition to all that, look into asking your doctor to prescribe you LDN (low dose Naltrexone), it has no side effects other than possible vivid dreams and supposedly helps people with autoimmune diseases to recover!! Some doctors are completely clueless about this drug so do your research (look it up on the internet under LDN) and go prepared to your doctor. If he/she doesn’t prescribe it find one who will. I plan on going on this drug as soon as I can ween myself off the codeine.

          Another thing that may or may not help are nicotine patches. A lot of UC’ers go into remission on this, but it’s contraindicated for people with heart issues. I started the patch a few days ago and already have reduced blood, urgency, gas, pain… and going less often. It may actually put me into remission!

          I hope you can return to health soon!

          Sincerely,
          Georgie

          • jMay 10, 2013 at 2:13 pm #

            Here is an update on my progress after leaving the FMT study at the UW because of a flare.

            I took a short course of Entocort and went back into remission after the first dose. Once I finished the RX I began FMT enemas at home. First daily and then occasionally. I have remained symptom free since late February.

            My remission may be due to the placebo effect. Since I think it will work, it does. The placebo effect is documented in medical literature. Either way, whether it is the introduced microbes or the mind/gut connection, I’m OK. I feel great.

            I take each day as it comes but do not look forward to September. Oddly, on the same date in September for the last couple of years I have experienced a flare.

            I take a maintenance dose of Lialda, probiotics, a shot glass of olive oil, and follow the SCD diet.

            Wish you all good health~

  2. Angie
    AngieJanuary 8, 2013 at 6:51 am #

    Good luck! I hope that you continue to have success with this trial. This is definitely something I would consider trying as well. Fingers crossed for us UC’ers!

  3. CindyJanuary 8, 2013 at 8:12 am #

    This is so encouraging…I have been reading up on this procedure as our 11 yer old son was diagnosed and nothing worked for him but remicade. Our doctors at children’s in columbus ohio say they have looked into this but there are no protocols for children. If you have opportunity to ask your doctor see if he knows anything about any studies with children. This website has been a blessing to us. As it is so hard to make decisions for your child. This hit us like a ton of bricks. He has been healthy his whole life and two episodes of bloody stool and told his whole colon is effected.

    Praying for your continued success.

    Cindy

    • Chris LJanuary 16, 2013 at 7:20 am #

      Hi Cindy and All,

      My son (14yo) diagnosed pancolitis in July 2011 recently had FMT at Boston Children’s Hospital. The GI performing via colonscopy is Dr. Michael Docktor.
      My son was failing all conventional medicines. We had him admitted to Children’s in the Fall and pushed for FMT – luckily there Dr. Docktor was ready and willing. He continues to get remicade every 4 to 5 weeks. Just weaned off the prednisone and some symptoms are coming back. We are not making any real diet modifications – only low residue when he’s having issues. He takes methotrexate once a week and VSL3 -2 caps 2x day. Only time will tell if the FMT is working. We do weekly boosters at home.

      -Chris L

  4. jJanuary 8, 2013 at 10:52 am #

    Here is the link to more information about the study: http://clinicaltrials.gov/show/NCT01742754

    I will keep you updated on my progress. It is important to note that although I am still asymptomatic, in other words I feel fine, a sigmoidoscopy last week revealed “mild” colitis. My condition prior to the transplant was, “moderate” pan colitis. It is important to note that even though this is a definite improvement I still have the disease. Time will tell whether I will continue to improve.

    Many patients with UC are not aware of the fact that being asymptomatic is not the same as being healthy and disease free. At present there is only one cure for UC and that is the removal of the colon.

    I have been following the SCD diet without exception for over two years and although it does provide some relief and it is a diet that I enjoy, it is not a foolproof method for controlling UC. I do have an adult child who has also been accepted into this study.

    For the parents of the child with UC, you might check with the University of Chicago or the Cleveland Clinic to see if they are using FMT protocols. Seattle’s Children’s Hospital is recruiting for a current trial: http://clinicaltrials.gov/show/NCT01757964

    I appreciate this website and have found the information that is shared very helpful.

  5. MikeJanuary 8, 2013 at 1:58 pm #

    Reading about fecal bacteriotherapy on Wikipedia makes you wonder why this isn’t more common.
    http://en.wikipedia.org/wiki/Fecal_bacteriotherapy
    (or the article was written by someone with an ulterior motive wrote it)

    Thanks for sharing J – good luck and please keep us posted!

  6. Lisa OH
    LisaJanuary 8, 2013 at 2:24 pm #

    Wow!!!! That is awesome, J! I am so happy the FMT worked for you. I have a Jpouch, but keep getting c diff, so my GI is going to do an FMT in a couple of months for me.

    Best of health and happiness for years to come!!

    Lisa

  7. bevJanuary 8, 2013 at 3:16 pm #

    How fabulous J! I wish you continued remission forever!!

    I REALLY believe in this procedure.

    :)

  8. Kristin
    KristinJanuary 8, 2013 at 6:47 pm #

    That is music to my ears! I am going to start at home FT for my daughter next month and I am so hopeful that it will keep her remission.

  9. GaryJanuary 9, 2013 at 11:20 am #

    I’ve been doing that since November and with a bunch if vitamins I’m taking and have improved tenfold. :)

  10. jJanuary 9, 2013 at 4:02 pm #

    You can read my story above about my experience on the University of Washington FMT trial for ulcerative colitis. I thought I might add some background about how I found the study.

    I read PubMed and visit other sites that offer access to published medical papers. I am particularly interested in emerging treatments for UC. One of the studies I read was about the use of FMT to resolve recurrent C. diff infections. I had read other studies that suggested that treatment with FMT might be beneficial for patients with UC as well.
    I wrote to one of the doctors who authored the study and asked if they would consider trying the FMT protocol on a patient with UC. I sent the letter on a Wednesday and was contacted by phone on the Friday of the same week. The author’s nurse said they had received my letter and referred me to a colleague in the same city and urged me to contact his nurse. I phoned and spoke with the wonderful nurse and gave her my contact information. Soon after, Dr. Zisman called me and did a quick phone interview to make sure I met the parameters of the study. I then made an appointment for an in person interview and a series of tests. I brought my husband, the donor, with me to the appointment. He too was required to take a series of tests and undergo a thorough interview to make sure he was a willing participant. We had a good laugh because he is a frequent blood donor so this “donation” would be rather simple by comparison.
    He was tested for hepatitis, HIV, syphilis and other pathogens. My joke is that if he had tested positive for any of those diseases (we’ve been married for over 30 years) then I had bigger problems then UC.
    I encourage anyone with a chronic disease to be curious enough to learn about the disease and persistent enough to advocate for themselves in finding therapeutic options to enhance their health. Not every therapy or Rx will help. I think it is wise to be reasonable in our expectations. Even if this therapy doesn’t help me, I feel it is important for me to at least add to the knowledge base of potential therapeutic options for other patients with UC.

    • AnaApril 15, 2013 at 1:04 am #

      A new study has just been completed with 75% success rate. Please see below.
      http://www.ncbi.nlm.nih.gov/pubmed/23542823

      The question is how can we get it locally, convince our doctors that it is another treatment option (without horrible site effects), and have insurancence pay for the donor testing and, possibly FT, unless it’s performed at home.

      J Pediatr Gastroenterol Nutr. 2013 Mar 29. [Epub ahead of print]
      Safety, Tolerability, and Clinical Response after Fecal Transplantation in Children and Young Adults with Ulcerative Colitis.
      Kunde S, Pham A, Bonczyk S, Teri C, Duba M, Conrad H Jr, Cloney D, Kugathasan S.
      Source
      *Spectrum Health, Helen DeVos Children’s Hospital, Grand Rapids, MI, USA †Michigan State University, Grand Rapids, MI, USA ‡Emory University School of Medicine, Atlanta, GA, USA.
      Abstract
      OBJECTIVES:: Colonic dysbiosis contributes to the development of colonic inflammation in ulcerative colitis (UC). Fecal microbial transplantation (FMT) is being proposed as a novel treatment for UC as it can eliminate dysbiosis. However, no prospective data exists. We initiated a pilot study to evaluate feasibility and safety of FMT in children with UC. METHODS:: Ten children, 7 to 21 years of age, with mild to moderate UC (pediatric ulcerative colitis activity index [PUCAI] between 15 and 65) received freshly prepared fecal enemas daily for 5 days. Data on tolerability, adverse events and disease activity were collected during FMT and weekly for 4 weeks after FMT. Clinical response was defined as decrease in PUCAI by >15 and decrease in PUCAI to <10 was considered clinical remission. RESULTS:: No serious adverse events were noted. Mild (cramping, fullness, flatulence, bloating, diarrhea and blood in stool) to moderate (fever) adverse events were self-limiting. One subject could not retain fecal enemas. Average tolerated enema volume by remaining nine subjects was 165 mL/day. After FMT, seven out of the nine (78%) subjects showed clinical response within 1 week, six out of the nine (67%) subjects maintained clinical response at 1 month, and three out of the nine (33%) subjects achieved clinical remission at 1 week after FMT. Median PUCAI significantly improved after FMT (p = 0.03) compared to the baseline. CONCLUSIONS:: Fecal enemas were feasible and tolerated by children with UC. Adverse events were acceptable, self-limiting and manageable by subjects. FMT indicated efficacy in the treatment of UC.
      PMID: 23542823 [PubMed - as supplied by publisher]
      The following toggler user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.Destroy user interface control
      LinkOut – more resources

      • shelly in maineApril 15, 2013 at 2:57 am #

        Ana,
        My response got lost somewhere, but Adam did a Q&A with some leaders if you go under alternative meds on here. That may lead you to some info you need. She may also be able to volunteer for some research as well.

  11. PradeepJanuary 10, 2013 at 1:50 am #

    Hello Guys

    Just found out that synthetic poop is developed in canada to treat C.Difficile infection.
    They have mentioned that in future it can be used to treat IBD. Here is the link:-

    http://www.uoguelph.ca/news/2013/01/post_229.html

    • MikeJanuary 12, 2013 at 9:21 am #

      Thanks for the link Pradeep, that sounds promising.

      The best part:
      “The stool – a “super-probiotic” called RePOOPulate ”

      RePOOPulate. I love it when people keep their humor… ;)

  12. Sarah
    SarahJanuary 13, 2013 at 8:06 am #

    Hey J,

    The FMT procedure is intriguing to me, my parents and I have been doing some research on the matter because my dad thinks this could really work for me. When I asked my G.I doctor about doing a FT (to help with my UC) he was not very thrilled, simply stating that I could get a bad source of fecal matter, ultimately causing me to feel even worse. If this is not too personal to respond to, I was wondering what fecal matter was used in your transplant… Did Dr. Zisman ask for a sample from a family member or did he just use a random good-bacteria fecal matter? Once again, I understand if this question is too personal to answer! I am just super curious about this procedure and would like to know more. Thank you. Hope you are still feeling fine. Hopefully one day the UC will be completely eliminated!

    Thanks again,
    Sarah

    • jJanuary 13, 2013 at 8:57 am #

      Hi Sarah,

      My husband was the donor. He was required to take a series of tests and undergo a thorough interview to make sure he was a willing participant. We had a good laugh because he is a frequent blood donor so this “donation” would be rather simple by comparison.

      He was tested for hepatitis, HIV, syphilis and other pathogens. My joke is that if he had tested positive for any of those diseases (we’ve been married for over 30 years) then I had bigger problems then UC.

      Any reputable medical center that uses the FMT protocol will have systems in place to properly screen donors. Most GI docs have not been trained on how to do this procedure and there is not enough clinical evidence yet for medical centers or doctors to make this therapy part of their practice. I feel very fortunate to have been accepted into this study and there will probably more studies to evaluate the efficacy of this treatment.

      There are currently studies in Hamilton, Ontario Canada and the University of Chicago. Dr. Borody’s clinic in Australia does perform this therapy. He is one of the doctors who developed this protocol and is an adviser to the study that I am a participant in.

      Best of luck. I continue to feel great.

      J

      • Sarah
        SarahJanuary 15, 2013 at 7:47 pm #

        J,

        Thank you so much for responding so quickly to my questions. I will definitely have to do more research on this and see if there are other studies taking place, it would be incredible to actually be a participant. I know it is different for each individual, but if this could actually make me feel better, I am willing to try it.

        This may be a dumb question but when I hear Hamilton, I automatically think of Hamilton, Ohio (I currently am a student at Miami University in OH haha so that is why I think of that). So where exactly do you mean when you say Hamilton?

        Also, once again if this is not too personal, when you say you are feeling great (which is awesome, so happy for you!)…do you mean solid stools at normal frequencies (like one or two)? Do you have to watch what you eat or are you on a regular diet again?

        Once again, sorry for the questions- I am extremely curious and really think this may be a possibility for me…I have only heard good things so far from different articles I have read! Thank you again for your time!

        Sincerely,
        Sarah

        • jJanuary 16, 2013 at 12:06 pm #

          Hi Sarah,

          Hamilton is in Ontario Canada. You might try contacting a gastroenterologist at a large university or medical center to see if there is a doctor who is trained in the protocol. I believe that that are physicians at the University of Chicago Medical Center who are trying this therapy. Your own GI specialist may know of a doctor who is willing to try this procedure.

          I am feeling fine. No symptoms of the disease. I still follow the Specific Carbohydrate Diet so I don’t eat any grains or dairy products. I do eat well and enjoy the diet.

          I remain cautiously optimistic about my health. I haven’t felt this well in years.

          • RJWFebruary 15, 2013 at 11:44 am #

            J,
            Regarding the FT was it just done once through the colonoscopy or was there followup FT either through colonoscopy or enema’s?

            Thank you and I am happy to hear you are doing great…

          • RJWFebruary 15, 2013 at 11:47 am #

            Sorry another question. Did you have to cleanse and take anti-biotics to kill off all bacteria before the initial FT?

  13. Allison-3
    AllisonJanuary 17, 2013 at 8:42 am #

    Just read this on NPR…. synthetic poop to treat C difficile and I suspect UC!!! Woohoo.

    http://www.npr.org/blogs/health/2013/01/15/169413851/robogut-makes-synthetic-poop-to-treat-stubborn-infections?utm_source=NPR&utm_medium=facebook&utm_campaign=20130117

  14. MikeLJanuary 18, 2013 at 1:49 pm #

    Today there was a good article about this on wired.com

    http://www.wired.com/wiredscience/2013/01/fecal-clinical-trial/

    This seems to be really promising against at least C. Diff:

    “[]…and it finds that the treatment worked much better than the powerful antibiotics that are usually given for C. diff infection — so much better, in fact, that the trial was ended early, because the monitoring board supervising the trial’s execution could not ethically justify withholding the transplants from more patients.”

    Exciting!

  15. wantacureJanuary 30, 2013 at 1:36 pm #

    Hello,
    This is my first visit to this site and it has been very informative. I have suffered from UC since I was 22. The onset came after taking antibiotics from having my wisdom teeth pulled. I am now 43 and have had some remissions but recently back to an 8 month flare up I have not been able to manage.
    I found some information from Dr. Williams website on doing an enema with Lactic Acid Yeast as it breaks down carbohydrates in the colon, He also recommends Aloe Vera Gel (liquid) taken with Chlorella 3x/day. Has anyone tried his remedies?
    What is everyone’s thoughts about colon hydrotherapy to clean out the colon and then adding in probiotics or wheat grass juice? Years ago a naturopath doctor gave me GI Fortify from Pure Encapsulations which has physiilium husk along with some other herbs and it seems to work at keeping the UC at bay only after being on Rowasa for a while.
    I also read on another site that Boswelllia extract is a great remedy. Are chia seeds ok on the SCD diet? I have read “Breaking the Vicious Cycle” and the strange item on that diet is saccharin which now is noted to promote cancer. Is her book outdated or is there a better version of this diet out there?
    After reading all this info on FMT, I am wondering if these other remedies would not be nearly as effective. I appreciate any feedback or support!
    Thanks

  16. VicMay 7, 2013 at 1:57 pm #

    Hi all,
    Ive had UC for about 10 years now, and have been on every med there is for it… and nothing has really worked. I recently went through a FMT (about 2 weeks ago)- not the simple enema kind, the whole colonoscope followed by 3 more sigmoid infusions. and i hate to say it, but i’m worse off now than when i went in. The Drs. cant explain it, i’m the 1st person to not have a favorable outcome. I’m back on a high dose of steroids just to try and calm this flare down and buy myself a bit more time to figure out my next move (helminth therapy or clinical trial of some sort) before i’m forced to resort to surgery. the only way i can make sense of it is that it wasn’t my flora that was the problem- and that its more my immune system- perhaps lack of Tregs. but if anyone else has had a poor outcome w FMT i’m interested in hearing their story.

    Thanks

  17. LynnSeptember 3, 2013 at 10:10 am #

    Looking for input on FMT as my 19 year old son is in for a study this fall at the University of Chicago. I, his mother wanted to be the donor but they have a donor already in place for all the participants. To help him attain remission which is the goal here and to help other people with UC what should he be doing prior to the procedure and after the procedure? What has worked or not worked for those of you who have had the FMT procedure? The slurry will be administered once via tube after the colonoscopy prep. To make a long story short at this time he is just on a lot of supplements and no probiotics and no meds which is one of the criteria to qualify for the study, has tried asacol for a very very short duration but made his symptoms worse. To mention a few supplements – pancreatic enzymes, omega 3, vitamin D3 and vitamin A, folic acid, zinc, iron, GI revive, turmeric, bentonite clay, Mucuna Pruruens , parabiotic plus, diatomaceous earth, fermented L- Glutamine, whey protein powder, and B12 injections once a month. My son is a sophomore at a big 10 college, infact today is his first day of college classes. He has a lot to juggle as the urgency to go can surface at anytime. Each day is different as he knows diet plays a huge roll in how he can feel and his symptoms as well as well as his stress level. Ultimately I would like him to do the Paleo diet as SCD is not going to work with him where he is at today. We are waiting for results from a food test we had done since it has been a battle with him. As a 19 year old college student there are so many temptations to eat and drink (yes I know he isn’t 21 and should ‘t be drinking !). Symptoms today include random urgencies and depending on what he eats or drinks bathroom visits 6 to 8 times a day. I think he visits the bathroom more than he really has to go for fear of a possible up coming accident if he can’t make the mark fast enough. Please let me know any helpful info as to those of you who have tried the FMT.

  18. rjwSeptember 3, 2013 at 1:21 pm #

    Lynn,
    I encourage you to go to youtbe and look at the different protocols for FMT and pursue it. I also strongly suggest you look at Adams video and posts about the SCD diet. Apparently he put out a video about taking on a flare by following a strict diet. you tube also has educational material about the diet as well. Also researchers and hospitals in Israeli have been using pot for many IBD and IBS patients as well, can also be found on the web. If I were you I would pursue the FMT go on a strict SCD type diet at a minimum. good luck….

    • LynnSeptember 3, 2013 at 2:24 pm #

      Thank you rjw. I’ll check out the FMT on utube . I know all about SCD, Paleo and
      Gaps. I am a Food Scientist and my son has a sister that is a dietitian. We know but trying to get my son to eat that way as I mentioned is a process, that’s what is so very frustrating. I know diet is so important for him to heal. Also thanks for the pot tip, I’ve heard that before but my son has let’s say we just don’t want to go down that road right now.

      • rjwSeptember 4, 2013 at 4:44 pm #

        Lynn,
        You are a Food Scientist then I would imagine you would “eat up” the book “Breaking the Vicious Cycle” by Elaine Gottschall. It is my understanding she is the one who built upon Dr. Haas work in bringing the news to us all about complex carbs and there impact on many of our intestines. I would go get the book today or if you want go to http://www.breakingthevisiouscycle.info also http://www.scddiet.org even look at some of the questions at http://www.scdiet.org/7archives/scd002_2.html also type SCD diet into your browser and find many more websites. I have become a believer to the theories of the diet and it appears to me aside from the nominal price of the book there is plenty of free information that she gives out there. Nice that you are doing this for your son and all but I am not clear if he is seeing the sense of urgency you are seeing. Regarding FTM, in addition to procedures and protocols expressed here, also on this site FTM page and other websites the jury is out as to what protocol will work if for certain any. It certainly work for C-Diff UC but that is another illness. I believe it works for some right off the bat. J Sometimes studies and websites talk about 90% “cure” rates but they are not clear and when you delve into it they are talking about C-Diff. J has said some interesting below about his experience. I have heard blood type of donor/recipient is important too. If I were to do it I would gather all the info I could. Get all the testing in advance I could Have it initially done by an endoscopy with follow-up daily enemas for a set period of time and then follow up months and years later with endoscopy, colon-oscopy or enemas even if everything is going great. The reason I like the endoscopy is is that the fluid would initially be released at the top of the intestines, rather than a enema trying to make its way up the small intestine probably never reaching the large intestine. I am not the expert I would just want to cover all my bases as all of our diseases are apparently different. Different degrees, locations and substance and I would not want success precluded because I did a limited version of a procedure. Remember a lot of people use the word “cure” I believe irresponsibly in an effort to make us and themselves feel good. Cover your basis with FTM, SCD, POT and whatever else you have in your tool kit.

  19. jSeptember 3, 2013 at 7:14 pm #

    I am the person who started this conversation. I was the patient in a trial at the University of Washington using FMT via colposcopy. I went into remission following the procedure but flared several months after the procedure. Following a short course of Entocort I began doing enema transplants at home. The response was immediate and I have been symptom free since February. I have had UC for over 40 years.

    It was reported to me that I was the only study participant who responded to the therapy. A DNA analysis of my microbiome prior to transplant and then post transplant was conducted. Post transplant my microbiome was identical to my donor’s. When I flared again it was more like my original microbiome. I find this fascinating.

    As the parent of adult children ( one who also has UC ) I can offer some advice. You can present your son with the information about medical options, diet modifications, lifestyle choices, etc… and that is all you can do. Your son will either adopt the changes or he won’t. Some people will not modify their diets ( I follow SCD) until they are facing a severe flare and the possibility of surgery. Denial is a state of mind many people with an incurable disease retreat to. Your son has an incurable disease. He may be having a very hard time adjusting to the limitations that this disease imposes.

    If there is a UC support group in his community or on his campus you can suggest that he look into it. You can also remind him there are students with lifetime chronic diseases such as diabetes who also must modify their lifestyles. At such a young age he may feel that life dealt him a lousy hand. I can’t disagree.

    Wishing you the best and better health for you son.
    j.

  20. LynnSeptember 4, 2013 at 4:39 am #

    Thank you j for your helpful words. So with all that you know today would you do the study or just do the at home enemas? And how many enemas a week would you do? Are you still doing the enemas? How old is your son and how is he doing? All of you UCers are my heroes doing life with this frustrating disease. Like my son said its always there. As I said my son is back at college but had a rough day as symptoms surfaced probably from stress.

  21. jSeptember 4, 2013 at 12:13 pm #

    Lynn,

    I would absolutely participate in the study again. As stated before, my motivation was both altruistic and personal. I have an incurable disease ( if I choose to keep my colon ) and I feel that any contribution I can make to the scientific understanding of this disease is my obligation and it is a privilege.

    The staff who managed the study were kind, professional, and kept me informed about the process.

    I did daily enemas for about 2 weeks. I don’t have my notes here but I think I did one or two follow ups. If my symptoms return then I will repeat the process.

    Your son may appreciate some of the smart phone apps that are available for tracking his diet and his symptoms. I tried using GI Buddy but found it cumbersome. I’m sure there are others.

    If you have a background in science you may appreciate reading NIH studies or other medical studies related to UC.

    Many of the people with UC who I have met developed the disease after being on antibiotics for acne or other reasons. It is a confounding disease and identifying the etiology is elusive.

    There are certain genetic populations that are at higher risk for UC and Crohns disease. Perhaps your family is in that group. I have two primary relatives with the disease but neither of my parents presented with it. My mother had her appendix removed as a child and that has been shown to be protective against developing UC.

    The medical literature is full of reports that smoking puts patients into remission. Clearly, not a great option for a 19 year old.

    As a mother I can understand your concern and worry. Your son is fortunate to have you in his corner.

    Wishing you all better health~
    J

  22. jSeptember 4, 2013 at 12:55 pm #

    I found this TedMed very helpful:

    http://www.tedmed.com/talks/show?id=18018

  23. LynnSeptember 5, 2013 at 6:50 am #

    Thank you j and rjw for your encouraging and supportive responses. Yes, as a Food Scientist I do “eat up” all this stuff with diet and the chemistry of what it does for the the body, only wish our son took as much interest. I have all the books and cookbooks and even have the broths all prepared in the freezer waiting for him to get to that point when he reaches rock bottom and wants to do the diet without cheating. He is a great kid and matured because of his health situation but is still 19 and not ready yet to be different around his friends at the expense of his health. I know some day he will be ready to tellhis story on Adams site, he is just in the mix of things right now. He is extremely stressed right now for fear of having the urgency and not being able to get to the restroom being in class or walking on campus. Getting away from the FMT here but I do take your advice and I do have many questions. The first appointment is for that reason so I will take all my questions.

  24. SunSeptember 20, 2013 at 6:00 am #

    J -

    Thanks for sharing your story. You stated that you did FMT at home, daily for 2 weeks and then perhaps 1 or 2 follow ups. If it is not too personal, can you share enough details of your procedure to be able to reproduce it? I live in an area without access to hospital-based FMT services and may be interested in talking to my physician about ensuring a safe donor and trying this at home. Thank you.

  25. jSeptember 20, 2013 at 8:24 am #

    Here is a video demo: http://www.youtube.com/watch?v=xLIndT7fuGo

    Make sure that your donor is tested. This is a very simple procedure.

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