Ulcerative Colitis Tips


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FMT Miracle, Getting C-Diff and How it Helped My Ulcerative Colitis

I was diagnosed with ulcerative colitis about a year and a half ago

I lost 30lbs after being initially misdiagnosed with a viral/bacterial stomach infection. Eventually went to the ER where I got my diagnosis via sigmoidoscopy.

I was given prednisone (responded well) and then given Lialda…I was flare free for a year but constantly forced to carefully consider what I ate, dealing with fatigue, but generally living a normal life. I dealt with occasional bleeding, loose stools, but fatigue was the worst. Then, I got hit with what I assumed was my 2nd big flare. The D came back with a vengeance and symptoms mimicked my initial flare. This time I had no response to prednisone. Took a stool test after a few weeks of suffering and it turned out I was diagnosed with C-diff. I was in a combo UC and C-Diff flare. It was miserable.

I was given a 14 day course of Vancomycin but was warned by doctors that it might not kick the bug since my immune system was comprised because of the prednisone, which they weaned me off quickly. I began to see improvement each day on Vanco, but as I neared day 14, I began to do more and more research. It was then I started learning about FMT (fecal microbiota transplant). Based off my research and conversations, I quickly learned doctors can’t do FMT without failing two rounds of antibiotics and they can only do it for C-Diff – despite all the promising data out there for UC and FMT.

Then, I found a physician that was willing to be my consultant to do FMT at home. I had no desire to wait for another failed round of antibiotics and if I were to “cure” my C-diff with that second round, I still would not address the underlying issue of my gut bacteria being out of whack.

My reasons for wanting FMT: 1: it could kill any remaining bad bacteria from CDIFF and, 2, the data for treating UC with FMT is VERY PROMISING.

I figured, why not not try to kill two birds with one stone.

My experience with FMT has been nothing short of a miracle.

Please consider finding a healthy donor , dealing with the yuck factor (it’s not bad at all, just like a hydrocortisone enema), and treating this disease at the source. I can’t promise the same results as I got but it is clear that there is a strong link between gut bacteria and UC. I happened to stumble into this treatment because I was diagnosed with C-diff, but I encourage anyone with UC to give this a shot. This could be your miracle as it was for me.   Feel free to leave me a comment with any questions you may have.

written by Colin P

submitted in the colitis venting area




FMT

25 Responses to FMT Miracle, Getting C-Diff and How it Helped My Ulcerative Colitis

  1. Adam
    Adam September 9, 2017 at 11:51 pm #

    Thank you for sharing your story Colin, and please please please keep us posted on how you are doing in the future if you continue with the Fecal transplants!!!!

    Have a great rest of the weekend,

    Adam

    • Mahesh Naphade September 11, 2017 at 5:00 pm #

      Hi Adam and fellow UCers with FMT experience

      It is great to learn about another FMT success. I am looking for doctor who is willing to help me locally here in Raleigh NC. Is there a any such list of FMT practicing physicians available / anyone has compiled / published?

      Could you help me connect with Colin? I have few questions about FMT iteself (process, donor, doctor etc)

      Appreciate your help and all the resources you have provided to all fellow UCers

      • Colin P September 12, 2017 at 12:34 pm #

        My email is colinel@gmail.com

        I will give you my cell and we can connect.

  2. David Maas September 10, 2017 at 2:35 pm #

    Feel free to leave me a comment with any questions you may have. I am new to I Have UC and was wondering how to you reply to Colin P? He indicated that I could leave a comment but I don’t know how to. Could you please give me the instructions on how to reach Colin P.

    Thanks,
    David

    I emails and information is the only thing keeping me going. I have been in shock since diagnosed July 2013.

    • Colin P September 12, 2017 at 12:33 pm #

      David: my email is colinel@gmail.com

      Once you email me, I will give you my cell.

  3. Linda Fink September 10, 2017 at 3:13 pm #

    I just had this procedure a week ago. I’ve had uc for more than 20 years and have at least one -3 serious flare up’s a year. Two+weeks ago I thought I was having an appendicitis attack. Went to urgent care, they agreed. Next stop ER for three days. Scan showed colitis flare up and “bacteria” infection. Pain meds did nothing. Vancomycin and fluids. Sent me home with the vancomycin, couldn’t keep it down. I couldn’t drink or eat for days after starting the vancomycin . Saw my GI doc who immediately put me in the hospital (dehydration was at a critical point). After 4?days they did the FMT miracle Procedure. Thought the concept was a bit weird but I wouldn’t hesitate to suggest this to anyone in need. I am basically trashed from the fatigue, but otherwise feel great and I’m slowly bringing real food back into my life. My doc also said this may have a positive impact on colitis but the research is in the early stages. Stay tune.

    • Colin P September 12, 2017 at 12:32 pm #

      Great to hear Linda. I hope you continue to heal and can find a way to do it more regularly if needed.

  4. Cathy Miller September 11, 2017 at 6:53 am #

    This is such great news hearing someone else has been profoundly helped by fecal implants. ..without them I am sure I wouldn’t have made it.
    Thanks to Adam my story of survival is on this site re a free book…just search Cathy’s Free E Book.
    It will tell you how to proceed.
    Let me know if you need help I am well and so thankful someone took the time to teach me Thanks Universe.

  5. Susan September 11, 2017 at 3:13 pm #

    Hi! I’m also in California and have had one FMT a few years ago. I was so sick from the prednisone and two rounds of Remicade!! I was fortunate to find a doctor willing to do it! I was able to go almost med free (with the exception of MJ) for almost two years. Sadly, I am currently in a flare, so I’m seriously considering trying another FMT. Glad to hear more people are having success with the procedure!

    • Colin P September 12, 2017 at 12:31 pm #

      I forgot to say…Those results are amazing, with one treatment!?!

  6. Kristen September 11, 2017 at 4:08 pm #

    I am getting a FMT soon here and am motivated by everyone’s stories! I am also in California, I wonder if we could create an email group or something to keep each other posted on the treatment outcomes in each of our situations. I am trying to follow the new research on the microbiome, and I hope this is a new chapter for patients struggling with IBD :)

  7. Kristen September 11, 2017 at 4:18 pm #

    How do you find a doctor willing to do it? And how do you find a donor?

    • Colin P September 12, 2017 at 12:30 pm #

      You won’t find a doctor in the US willing to do it, just doctors willing to be “consultants”. Not FDA approved yet. The government hasn’t quite figured out a way to regulate poop and ensure safety.

      That’s why sites like http://www.thepowerofpoop.com and YouTube has so many videos/testimonials of people doing it at home.

  8. Mel September 11, 2017 at 5:05 pm #

    Thanks so much everyone for sharing your experiences. Please keep us updated as to your progress. I would love to get FMT but they are so expensive in Australia, unless you have C-diff. My hestitation is that I have read the the effects are not long lasting and repeated procedures are needed, thus making it out of reach financially. Would love to know people’s long term progress so please keep us updated.

    • jay September 12, 2017 at 2:04 am #

      Mel

      I did this myself with known donor. Im in Oz too. Message me if you like.

      Jay

    • Colin P September 12, 2017 at 5:03 pm #

      Hi Mel,

      I hope you can find a way to do so this more regularly! Using one of the clinics overseas is tricky (for UC) both financially and logistically since best results are with multiple treatments.

      Find a healthy neighbor, family member, or spouse :)

  9. Jen September 11, 2017 at 5:43 pm #

    So great to hear FMT worked for you! I’m really curious about how much of UC has to do with the bacteria in our gut. A few questions… how often do you anticipate you will need a FMT? Where did the fecal material come from? (A family member… or did the doctor recommend someone, are there donors?)

    • Colin P September 12, 2017 at 12:27 pm #

      Hi Jen!

      We don’t know “how much” UC has to do with gut bacteria but we do not it plays a large role. A high percentage of patients are responding to it. There still are some patients that won’t respond to FMT, for whatever reason.

      FMT is not FDA approved for UC yet. Only for Cdiff. Doctors (even the ones that want to) have their hands tied but you can still find some that would be willing to act as your consultant for at home FMT.

      The other option would be going overseas but that still doesn’t help that much for UC since you will need it on a more regular basis.

      That’s why so many of us are doing it at home….not ideal but worth it if it can save your colon and you can find a healthy donor where you can get samples regularly.

      PS: I should say that I’m not a doctor, and never make any big decision from a forum alone :)

      There are risks: you can pick up bloodborn diseases, parasites, could potentially get another immune disease (say your donor had Crohns), and there is even literature that talks about one patient picking up obesity from her donor. My point being, do your research. :)

  10. Colin P September 11, 2017 at 7:08 pm #

    Hi Susan!

    Do it! Any chance you have a healthy person at home that could potentially be a donor? Ideally a spouse? I say a spouse for two reasons.

    1) treatment for UC involves regular enema treatment. Typically, you would do for 5-10 days in a row, then shift to weekly or monthly, and some are lucky enough to eventually discontinue all together. The FMT specialist that I spoke with multiple times (currently doing research for UC for a top teaching institution) said to increase to 2-3x a week during a flare. *This is much different than treatment for Cdiff…FMT for cdiff is once or twice max with a 95% cure rate.

    2) if you use your spouse (assuming you are sexually active) you would already share most of the potential diseases that they screen for.

    Check out http://www.thepowerofpoop.com

    Also, make sure to listen to this:

    https://chriskresser.com/fecal-microbiota-transplants-an-update-with-glenn-taylor/

    If you can find a healthy person to act as your donor, I would encourage you to do this tomorrow. Blender, saline, mix, enema. It’s gross but will save so many colons and after doing it about 5x you will be numb to the yuck factor.

  11. Raj September 11, 2017 at 7:11 pm #

    Hi Colin,
    Thanks for sharing your story.
    Could you please explain how many times the FMT was carried out? And is there an easy to follow protocol for physician assisted FMT?
    Thanks,
    Raj

    • Colin P September 12, 2017 at 12:14 pm #

      from the research going on behind the scenes, I am hearing that FMT is most efffectice for UC when done regularly. 5-10 times initially, then weekly, monthly.

      I am still doing once or twice a week depending on how I’m feeling.

      Eventually I plan to wean off lialda but from speaking with the doctors, that particular drug is so benign that it is not a rush for me at all.

      The one set of patients that should be on FMT right away (in my opinion) are those of us that have UC and also got Cdiff. If you happen to be reading this and have had cdiff, run, don’t walk to FMT.

      One of those links I posted earlier talks about how the gut makes up 80% of the immune system and how doing his poop transplant is essentially doing an organ transplant…

      Also, the thing that put us over the top and led to us trying FMT was following Cody Capertons journey on YouTube. He was in awful shape, he currently is “cured” and on no medication at all. (I spoke to him on Facebook)

      YouTube “Cody Caperton”

  12. Jacob D Mehelich September 11, 2017 at 9:53 pm #

    I have had uc for 25 years. I started with sulfasalazide.untill I developed blinding headaches, Then prednisone untill it made me sick, then pentasa then azathioprine with azacol then humira with apriso and loperamide.two years ago I started buying kombucha, liked it and started making my own. I noticed that I was feeling better than I had in years. Then I did a stupid thing and quit the humira april 30 2016. i am in the VA system where doctors do sabaticals for a period of time and then you get a new one. I never informed them that I was quitting I just did it. I was tired of being a guinea pig for the pharmicutical industry. They dont cure desease because they make their money managing it, getting you on an expensive drug that may well kill you before underlying desease does, which you are supposed to take for the rest of your life. Happily this worked out well for me.I drink a big glass of kombucha every day, I am still taking apriso and loperamide. My bowells may never be normal but they are much better than they were. I dont recommend going cold turkey but I do recommend going the kombucha route along with whatever you are taking and see what happens. Its working for me

  13. Don
    Donald G Makowski September 12, 2017 at 4:40 am #

    Great story Colin and congratulations on your success! I too cured myself with FMT! I suffered for almost 10 years with sever ulcerative colitis. My free e-book was featured on this website and is available at http://www.thedoctorsaidwhat.com, It’s so great to have my life back thanks to FMT! Thanks Adam for posting these success stories!
    Don Makowski

  14. Colin P September 12, 2017 at 4:58 pm #

    Thank you for sharing. Just downloaded the PDF book and will be reading. Thanks again

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