Lets Give UC the Beatdown!

stacy colitis mom

Stacy with her daughter

Introduction: 

Hi. My name is Stacy. I have had UC for 17 years. I am a mom with 2 small kids.I hope that I can share some good info about me and this sinister disease because I think we all need to work together to kick its a$$!

Giving UC the Beatdown:

I first was diagnosed in 2005, hospitalized for a month, did steroids for a year. Finally regained remission and stayed on dipentum Then I had a 7 year remission where I went into denial that i even had this nightmare of a year called being diagnosed with UC. During my remission I had a great career met a great guy got married and had some babies. I started flaring on and off was totally miserable trying treatments, blew through doctors and tons of money trying every alternative treatment. Last June I had a fecal transplant via colonoscopy. Best life choice I ever made! My husband was my donor – I was so lucky to find a doctor willing to do this procedure for me. It is being done in Sydney Australia in a clinic and having great success. Since a week after FT i have been symptom free. I would be happy to talk to anyone about the FT – what it was and how it works. ALl of the medicines that I have tried are Asacol, Steroids, Dipentum, Colozal, Lialda, Rowasa and Steroid enemas. I have done herbs, Chinese and nautropathic medicine. I have taken VSL and florastor. I know that Dr. David Rubin at the University of Chicago is working to get a clinical trial done for Fecal transplants. I have been in touch with several others that have had one and are doing well. Some people try and do a home version, but for me because I have pan colitis I needed a doctor to do it via colonoscopy for it to work. There are some that think its gross and well it is! RIght now I am just so grateful that I can be present and healthy totake care of my family and I am down to 2 Lialda a day.

written by Stacy

submitted in the Colitis Venting Area




27 Responses to Lets Give UC the Beatdown!

  1. Bev February 10, 2012 at 5:00 pm #

    Stacy!!!

    Talk to me, girl! I am currently awaiting a referral from a doctor willing to do fecal bacteriotherapy (what a mouthful…lol). So…it works, right??? I just knew it!! You can read all of my other posts on this absolutely fantastic website by Adam, where I have been ranting and raving about this procedure.

    Anyway, I digress! Please tell me all about it…how many times or days you had the fecal enemas, what the procedure actually is like, what happens during it, etc.

    When I asked my gastro about it, her body language just changed. She reluctantly did refer me to a doc who does the procedure, but her whole demeanor changed. Just like that. (I, the patient, have suddenly become a self thinker, and too knowledgeable, I suppose). She seemed so foreign to me, all of a sudden. I am sincerely beginning to believe that our doctors do not want a cure, especially a simple, natural one, to be available to us. How sad is that? She also called the procedure…unethical. Can you believe that? She was trying to make me feel guilty, or bad, that I could or would possibly want to try it. What the heck is unethical about this procedure? There are no stem cells involved…sheesh. She has no problem, however, prescibing any dangerous drug, like remicade, steroids, and immune suppressors like imuran. Nothing unethical about that.

    Sorry, Stacy, I’m just so damn frustrated, yet excited at the same time! I am truly very happy for you, and anyone else who has been able to access this CURE. There, I said it….CURE!!! I believe it is the cure for UC. Somewhere along the line, our colons lost all of their good flora and bacteria, whether by illness, or other drugs, and we have to replace it. This is the way…I just know that it is!!

    Thank you so much, and yes, let’s shout it to anyone who will listen!!

    A friend,
    Bev:)

    • PeterNZ February 11, 2012 at 5:09 pm #

      Bevvy,

      I’m just controlling a flare now with some more pred. I thought you may be interested to hear how this on started. Coincidence or not you decide….

      I had been pretty good for the last 2 years with no major problems. And then a rat bit me (my cat brought it home and I rescued it from his mouth). I thought I’d better go to the doctor and was prescribed antibiotics just in case. Well a week later back came the blood, pain, blah, blah blah and it just wouldn’t go away.

      Maybe there is something in this gut flora thing and the antibiotics killed all mine and the colitisy ones moved in?

      Eat shit and live mellonfarmer!

      Cheers,
      Peter

      • Bev February 13, 2012 at 6:09 pm #

        Yep, I believe antibiotics are very bad for some of us…especially if we already have UC!

        This flare that I am currently in happened after taking AVELOX, a powerful antibiotic, because I contracted pneumonia while I was in the hospital having my last colonoscopy and endoscopy! Can you believe that. Next thing you know, old Bev’s bleeding and cramping again like there’s no tomorrow…a coincidence? I think not, Peter. Just like you.

        You gotta love your cat anyway, tho…lol

        Love your last comment!

        Cheers PeterNZ,
        Bevvy:)

  2. Maggie February 10, 2012 at 5:37 pm #

    Stacy, I’m really happy for you and any one else who’s done this procedure or will get to do it because of bad bacteria. Unfortunately for me (or fortunately?), while I do have UC, I have good bacteria in my gut and NO bad bacteria. My UC was brought on, more probably, by eating gluten all my life. I’m off it but still had a bad flare after Christmas which was partly brought on from eating eggplant! I’m in remission now and currently not on any meds, for colitis, but am waiting for approval for Cimzia. I prefer to stay off meds so if I have any side effects from it, I’ll go off. I’m following the eat right for your blood type diet. I’m type O, which follows the scd diet real close if not entirely. Hope things continue well for you.

  3. tracy February 10, 2012 at 6:58 pm #

    Hi Stacy,

    What is this procedure? I have never heard of it before but am hopeful. I love getting ideas on how to help this disease in the most natural way. Help! I would love to find out more about this. Thanks!

  4. Erin February 10, 2012 at 9:16 pm #

    Stacy,
    I have UC for 10 years. I have tried everything, unfortunately I have been on every possible drug for this disease, with no luck. In fact, I’m allergic to most with severe side effects. I have been to the ER twice since Nov, most recent 2 days ago. My doctor wants to start me on remicade after my colonscopy. Please please tell me more about the fecal transfusion and some info on the Chicago clinical trial. I’m over the meds and the diets seems so confusing!!!!

    Thank you!!!
    Erin

  5. patty February 11, 2012 at 9:27 am #

    I am fairly new to UC. I noticed some blood in the spring of 2011, but did not worry about it. I was working and living my life as usual. I was diagnosed with UC in August of 2011. By the end of October, I was running in and out of the bathroom 30 or 40 times a day. I am finally getting better, but I have been out of work for several months now, and as yet I am not well enough to return. I have read about this procedure and I am very interested. I despise all of the medications used for treatment of this illness and the horrific side effects. I have been on very high doses of prednisone for months and have gained massive weight. I have also been on Lialda, Imuran, Canasa and hydrocortisone. Last month I was hospitalized and had to have four units of blood. I tried the SCD diet for two months and followed it faithfully, with no real positive results. I realize that we all have different responses, but I am sick of all of these medications and am uncomfortable with their horrible side effects.

    I believe that for me at least until another method is discovered to replace the good bacteria, a fecal transplant is a viable option. Any information you can provide would be appreciated! I think it is wonderful that this procedure has worked for you and that you are able to reclaim your life!

    Thank you for this informative post,
    Patty

  6. Amos February 11, 2012 at 10:09 am #

    Bev,

    While I appreciate your enthusiasm and agree that people should look into Fecal Transplants as a treatment option I would caution you against instilling false hope into many who are suffering from chronic illness. It is not a cure all. It is not a panancea. It is still largely experimental at this point. I have read all of Dr. Borody’s research and while I agree the results in case studies are profound, the sample sizes are tiny. I have had a fecal transplant myself for UC and it did not work. That is not to say that it does not work. Maybe I needed a different donor or possibly a big dose of antibiotics first. I think it is definitely an option people should explore but it is not going to work for everyone. It actually made me a little worse in the short term. Just wanted to provide a little more perspective. Thanks.

    • Bev February 11, 2012 at 12:41 pm #

      Oh…thanks, Amos…I guess I was a bit over ‘exhuberant’. Anything natural that actually works really gets me going.

      I’m so sorry that the procedure did not work. You are the first person I have heard this from. I am going to proclaim my opinions with alot more caution, from now on.

      Again, I am so very sorry…

      Cheers,
      Bev:)

  7. Stacy
    Stacy February 11, 2012 at 12:21 pm #

    I am out of town for a few days. I am looking forward responding to all your questions. While I know FT will not work for all it’s still a viable option for many!!! I will put my protocol up early next week and ask my doctor who did this if I can post his info.

  8. George in Napa February 11, 2012 at 1:38 pm #

    The Veterans Administration is my health care provider. About 10 days ago when I saw my VA Gastroenterologist, I asked him about fecal transplants. He told me that this is something that the VA does not do. His response was the opposite of how Bev described her doctor’s response. He told me that if I found a doctor who does this procedure then I could submit to the VA a request to have them participate in the cost having this done. Of course they would have the option of 100% denying my request…… you don’t know unless you ask.
    My main problem is finding a doctor in California who does fecal transplants. I have done internet searches and have not found any. I have considered doing this self-administered at home using my wife as the donor. I have read a lot about this but I’m not 100% sure how safe it is unless the donor’s stool is tested to make sure its free of all the bad stuff (parasites, pathogens, etc). Here is a link that talks about this
    http://fecaltransplant.org/
    Next week I will be checking with my GI doc to find out what he has to say about self-administered at home.
    Fecal transplants as a treatment sounds very promising….. sure sounds a lot better than popping pills the rest of my life.
    I suspect we will see a lot more research being done on FT’s in the not to distant future.

    George in Napa

    • Bev February 12, 2012 at 8:45 am #

      Gosh, please keep us posted, George In Napa. In a state as large as, and with such a population as California, isn’t it hard to fathom that nobody is doing this procedure? One would think it would be in the forefront of research like this.

      I agree, George, that this treatment sounds very promising indeed, altho I received a bit of a ‘dressing down’ from Amos (above) in regards to my exhuberance in proclaiming it a cure. I am now cautiously optomistic…

      Again, please keep us all posted, and also, let us know about the home administered procedure…I am willing to try that, if need be…

      Cheers my friend,
      Bev:)

      • Rebeka
        Rebeka February 12, 2012 at 9:26 pm #

        Wow, Bev! I can’t believe the reaction of your doctor when you told him you wanted the fecal transplant! I seem to always agree with your posts, and I have a feeling my doc would react in a similar way. His main concern is how he can keep me on the drugs. Might have to start looking for an alternative doctor soon.
        George in Napa, I’m in California as well and haven’t heard of anyone here yet, who does (or got) a fecal transplant. Let us know!! I’ve been telling family and friends about the procedure and everyone seems shocked and incredulous. I hope it will be more mainstream soon.

        • Bev February 13, 2012 at 1:03 pm #

          Hi Rebekah…

          I know…I couldn’t believe my doctor’s reaction either. I felt like she slapped me in the face. She actually attempted to make me feel guilty and bad that I would have a mind of my own, and not agree with her wanting me to try even worse drugs, like remicade and imuran. She was like ‘oh, you’ve heard about THAT procedure’. I just don’t understand why she would also add that it is unethical. I can’t get past that…I don’t want to see her again, either…unfortunately, the gastros in my town are few and far between.

          I hope that Stacy has a wondeful response for all of us who are so eager to have this procedure work for us. Nothing could be better than an all natural way to deal with, or even possibly cure, ulcerative colitis.

          Thanks again Rebekah,
          Cheers,
          Bev:)

  9. Stacy
    stacy February 13, 2012 at 7:51 pm #

    Hi everyone! Thanks for all the interest and support. The protocol that i did for my FT was something that my doctor and i created together because i was his first FT. He has done several more since mine last June. I did a huge prep to make sure that my gut was not only cleaned but dead – no more living flora. it SUCKED! I went to the surgery center in the morning and waited for my donor to go ( who was screened HIV, Hep a and Hep B and parasaites). After he went it was blended with saline – and it was filtered. I went into the operating room was knocked out and my dr. sprayed my colon from top to bottom with the fecal matter. After the procedure i took immodium and a ton of it so the new flora would adhere, colonize and start to trick my colon into thinking it was a new organ. I ate a riduclous amount of fiber to help the flora populate. I ate ZERO foods that could have been processed with antibiotics. Optimally you want your donor to eat no sugar, no processed foods, no foods treated with abx. A week after the FT i had no symptoms. It was amazing. Many people after this do a vigiliant home version with enemas but i did not. I had a scope this past Friday because I knew i had a few symptoms starting. My life has been riddled with stress over the past few months (moving to another state and a child with an illness that needs many treatments). The synmptoms are mild – and very tolerable. I am hoping my doctor will do another FT this summer. I will try a different donor this time. The informatin that I have about Chicago is that they are starting the process to begin a clinical trial Intersted in being apart of it should contact David Rubin. I cannot wait to do another FT – i am not convinced its is a cure but am certain that it is a better option for me to get into remission. I am not a fan of the medications – while i know that they are a necessary evil my quest is to treat this disease in a more natural fashion. I am also meeting with a Chinese Medicine Doctor in March to see what he can add. Hope this helps, the doctor that did this me is Jonathan GOldstein in ROchester, NY. He said he is overwhelmed with requests for the procedure ( i blogged about it somewhere else and it got a huge following and he got so many calls.) People have traveled from California to see him about it. Please feel free to ask me any questions. I just moved to FLorida and have house guests now for the next month! AHHH! so be patient if takes me some time to respond. I also am very busy with my little ones. I am very committed to helping others with this nightmare of a disease and truly believe in the support that we can give to each other.

  10. Bev February 13, 2012 at 10:58 pm #

    Thank you Stacy. It’s alot to process, but I think well worth it in the long run.

    Good on you!

    Bev:)

  11. Jodi February 14, 2012 at 6:47 pm #

    Hi Stacy. I just want to thank you so much for posting your story. I am 38 years old and also have UC. The information you provided on the doctors who have or are possibly doing the FT gives me hope. I live in upstate NY (about four hours from Rochester) and plan on contacting Dr. Goldstein’s office tomorrow. I hope he will consider me a candidate. Again, I thank you. God Bless.

    Jodi

  12. Stacy
    stacy February 14, 2012 at 7:56 pm #

    Thank you Bev – I hope that you can find a more helpful open minded doctor – it is a challenge! I am happy to have found Adam’s site and appreciate that he is buliding this community for us to share what we are doing to fight UC! Good Luck Jodi, Dr G might be worth the drive if the FT helps you the way it has helped me.

  13. CC in Montana March 11, 2012 at 9:29 pm #

    Fecal Transplants work! I use them regularly to keep me in remission. It’s not the most joyful procedure but I have it down to 10-15 minutes from start to finish and it works and is so much better than the drugs docs want us to take (big ups to my husband for always giving me a donor poo).

    I wish more research would be done as I feel it could help many people gain remission and/or relief but there is no money to be made, so we can’t count on it. The trick seems to be making the bacteria “stay” or “adhere” in the colon. I have not taken Vanco or Flagyl before the transplants because I am scared to death of taking another antibiotic. Taking one of these could make it work “better” or make things a whole lot worse.

    FT’s are all the rage now in the Naturopathic world; there is a clinic in Portland, OR that does them now (fecalmicrobiotatransplantation.com). I highly recommend trying them for an extended period of time (at least a week straight). Why not? It’s cheap, it’s harmless (be sure donor is clean and para free, etc. as suggested in the Borody protocol) and might really help!

    There are many different “kinds” of colitis. Mine came on after taking an antibiotic (Septra) so I knew it was a bacteria “thing.” I feel that turmeric, ginger, boswellia (anti-inflammatory) help too. I also use transdermal LDN to keep my immune system in check and follow a grain-free, sugar-free, veggie diet (similar to SCD but no meat and very little dairy).

    I really noticed a huge difference when I added in Fecal Transplants. If the right bacteria aren’t in the colon, none of these drugs or anti-inflamms can cure but I honestly believe our bodies can heal and re-populate over time with proper diet (ex: many SCD successes..yeah!) and direct bacteria supplementation.

    If anyone wants the protocol, holler back. I’ll list it. Be well.

    • Bev March 12, 2012 at 7:06 am #

      HI CC in Montana,

      Wow! What great information! Cheers to you.

      I really believe that FTs are the only drug free way to control our messed up colons. I am currently awaiting a call from a specialist who does the procedure, and I cannot wait, needless to say. I have ‘bells on’, to say the least.

      I have had a proverbial ‘flare’ for over a year now, and am currently only willing to take asacol @ 12 per day, and lots of probiotics. Not too sure the asacol is doing anything, but you know how afraid we UC sufferers get, to stop the so called ‘maintenance’ drug. I am a very naughty patient who refuses to take steroids, imuran, and remicade. No way. Drugs got me into this whole mess, and I’m not about to take even more dangerous ones. I took accutane four times in my 20s, and was diagnosed with UC shortly after the last course of it. Go figure. That was 15 years ago. Last year, I somehow contracted pneumonia, and had to take the strong antibiotic avelox. Well, needless to say, ever since then, my colon has been screwed. Worst flare ever.

      Sorry, I digress. Again, any more info you have, I would love to absorb! I’d like protocol please!! Holler bavk…please?

      Cheers,
      Bev, in Canada

    • Bev March 13, 2012 at 4:57 pm #

      I would like protocol please!! I’m hollering!!

      Cheers,
      Bev, in Canada:)

  14. Aimee March 13, 2012 at 6:06 pm #

    My brother did the fecal enemas and it seemed to have stopped his bleeding, he had bloody stools for 11 years and did the fecal enemas in August by November the bleeding was gone and still is. He didn’t go to a doctor to perform it though he actually did it himself using his two youngest children as donors. I think he just looked it up online how to do it and being a pro at enemas managed to do it himself. Hopefully more doctors will get on board this procedure. I know it sounds super gross but obviously it does work. Bev I really hope you can get this procedure done I have a really great feeling that it would be a great answer to your flare up. – Aimee

    • Bev March 14, 2012 at 11:41 am #

      Thanks Aimee!

      Proof, once again, that it is really about good bacteria. I strongly believe this. I think people’s colons get hurt by antibiotics, and very bad illnesses. Simple, really. Replacing the good bacteria is what is needed.

      Thank you for recommending the internet regarding the FTs. I think I’ll look it up!

      Cheers,
      Bev:)

      • Aimee March 14, 2012 at 6:43 pm #

        I believe the same way. I’ve been really fortunate, I have 5 kids and my oldest is 17 and I have never had to give them antibiotics. Not that they have never been sick they have but I’ve been blessed enough that the natural things I’ve used have worked in treating whatever was ailing them. I’ve been close a few times but thankfully haven’t had to. I feel like the longer I can keep them from needing them the better off they’ll be in the long run. It’s how I was brought up. I’m not a nut or anything I usually give a certain amount of time with things and if they don’t improve i would use them just haven’t had to yet:)

  15. Aimee March 13, 2012 at 6:20 pm #

    @ Jodi, we only live about an hour and a half from Rochester between Buffalo and Niagara Falls, thanks for letting me know there is a gastro doctor so close that will do this procedure. Gonna pass that along to my brother.

  16. Jodi April 2, 2012 at 6:23 pm #

    Hi Aimee. I hope that your brother has better luck than I did. I called the doctor in Rochester and spoke to his secretary. She was very kind, stated that she had many calls/requests for FT’s, and stated that the doctor was seeing patients, but would get back to me later that day. He never did. I called again later in the week, just to verify that they had my correct phone number and I apologize for being a ‘nudge’ but further explained that I was anxious to speak with him, yet he never called.

    Unfortunately, this has been the case with others as well. I called a doctor in the Bronx who also does the transplants. I spoke with his secretary and she asked that I send an email directly to the doctor explaining my situation. I wrote to him right away, and received no response. I’m obviously frustrated. I have pan colitis, which is basically colitis throughout your entire colon (not sure if your brother has the same). It is easy to see how people can lose faith in the medical community.

    I hope that your brother at least has an opportunity to talk to someone.

    Jodi :-)

  17. Leslee August 16, 2012 at 10:43 am #

    Hi All!

    I LOVE, LOVE, LOVE reading this story! My son was diagnosed with UC in December 2011 (at 19 months old). He was admitted to the hospital with a hemoglobin of 4 and had too many blood transfusions to count due to the excessive blood in his stools. We have been through a lot with him in the last year and have been desperate to help him! He was hospitalized several times and immediately following his last hospital stay we hopped on a plane to Portland, OR where we met with a wonderful ND who helped us get started with FMT (fecal transplant). Let me tell you, it’s working! I am my sons donor and we currently administer FMT every few nights. It’s gross to prepare, but it’s totally worth it. The medical doctors wanted to completly remove his colon and we said HELL NO! They had a surgeon speak with us on 2 different occassions. I fully believe he can heal and overcome this! He is also on high doses of probiotics, a very specific diet (no gluten, no processed foods, no beef) and a wonderful regimen of vitamins and supplements. He is currently on a very low dose of Prednisone (we are in the process of weaning and hope to NEVER use it again!) and continuing Remicade until we see mroe lasting results. I have no doubt that UC can be beat! My darling, thriving 2 year old boy needs his colon. Period!

    All the best to all of you here who are fighting your own battle. Don’t give up.

    Oh, also, condider FMT as an option!

    Leslee :-)

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