Ulcerative Colitis Tips


Ulcerative Colitis Tips PLUS iHaveUC Newsletter




Dear FMT…Please Save Me From Surgery

Introduction:

36 years old and recently married (May 2012) to a beautiful girl. Ironman triathlete (not at the moment) and airline pilot from Australia. Diagnosed Ulcerative Colitis at age 19 (1997) with a 2 year flare. Controlled then with 5ASA Sulfasalazine. Symptom and drug free for 15 years (had appendicectomy) and then had a nasty flare in 2010. Treated again with 5ASA Sulfasalazine and Mesalazine En’s. 18 month remission and now in the worst flare of my life. Praying that something saves me from losing my job and my life.

Some more about me:

Previously very outgoing and high sport driven. Over the course of the last two years, have gradually had to pull back from most activities and invitations due to this evil, slow consuming illness.

Trying FMT (Fecal Microbiota Transplant Therapy) with Prof Borody at CDD in Sydney in the hope it will provide a non-surgical cure. Failing that I will need to have surgery to retain my job and to service our mortgage.

Symptoms:

Severe circumferencial UC to 35cm
>6 bloody and mucous BMs/day
Lower abdomen discomfort and pain
Tensesmus and Rect pain
Brain fog

Currently being treated by Prof. T Borody (at CDD in Sydney) with FMT in the hope of a sustained remission without any more drugs. FMT started two weeks ago and have been penciled in for Remicade to assist in speedy treatment.

Dear FMT…Please Save Me From Surgery

Very, very scared to be in the position I am in.

Caught between a rock and a hard place. If FMT doesn’t work, I will almost certainly have to proceed with surgery in order to maximise the chance of continuing my career (strict medical requirements that may be satisfied if I get a good j pouch result). I see having a permanent bag as the end of my life and can’t entertain the idea. So unsure and nervous about the statistics and the stories of bed soiling at night.

Have read so very much about all UC matters on the net. Research papers, SCD diets, FMT/HPI, LDN, JPouch videos and my head is spinning from it all (not to mention the prednisone). There’s a lot of information out there and some of its out of date. Combined with an archaic medicine system caught up with red tape and capitalistic pharmaceutical companies, I’ve lost a lot of faith in medicine.

I really want to keep my colon and remain medicine free. Recently bought a suitable SCD yoghurt machine here in Australia (amazing how hard it is to find one of those darn things here). Hoping that the yoghurt might help although I’m on orders to remain on a high fibre diet in order to feed the good bacteria from FMT.

My questions;
1. I have to start doing home FMT and am very scared about doing the process at home. I’m really troubled that I won’t be able to look at myself in the mirror and also worried it will affect the perfect, married home life we have.
– Has anyone got any advice or a similar experience FMTing with your wife etc?

2. I’m very concerned about the Remicade that they want me on. They say I have severe distal colitis and the prednisone is not doing much and needs to be reduced. I read about this drug years ago and recall hearing some very bad things about it. I always envisioned that I would have preferred the surgery to this level of drugs. I have been told they want to use it for a month or two to calm the inflammation and let the FMT repopulate the colon.
– thinking of the long term, Is a short course of Remicade safe in everyone’s opinion?

Medications:

Sulfasalazine 500mg BD
Prednisone 20mg
Colifoam BD
FMT

Tried the SCD with very limited results for a short amount of time – had to go n high fibre diet to support FMT
*Considering (and scared of the effects of) a short course of Remicade

written by Craig

submitted in the colitis venting area




69 Responses to Dear FMT…Please Save Me From Surgery

  1. Ken July 18, 2013 at 1:37 pm #

    Craig,

    Sorry to hear its come back at you with a vengeance.

    I haven’t had this as long as you, but I am an endurance athlete signed up for my first 70.3 next April. I run around 40 miles a week, and bike another 100. This condition stopped me in my tracks last year and I have been able to get into remission and maintain it for 8 months now using supplements.

    The left side of my colon was inflamed and Asacol didn’t help. I followed the advice of a couple folks on here concerning supplementation just as I was getting ready to throw in the towel and ask for the more powerful drugs. I recommend looking up stories by Bev and Graham as I based my program on their experiences.

    I started taking Extra Virgin Olive Oil, L Glutamine (amino acid which is main fuel for rebuilding lining of the colon) and a strong probiotic. I also added Flax Seed Oil (anti inflammatory). At the beginning of December while in a full flare. By January I was in remission. I’ve since stopped the Asacol, and have added in different anti inflammatories, switching them up so my body doesn’t get used to any certain ones.

    I haven’t had any dietary restrictions, though I try to eat well to keep up my mileage. As a 46 yo, I have to train smarter not harder.

    One last note, as I say every time I reply. When I first started this, I felt better quickly, but there were setbacks in the first few weeks. I questioned several times if I was just fooling myself. But I kept it going and am glad I stuck it out. I keep taking all of it to hopefully maintain long term viability.

    I don’t know what the requirements are for being a pilot, but this may help if you are willing to give it a try. I hope you find relief whatever route you go.

    • Craig July 18, 2013 at 4:46 pm #

      Hi Ken. Great to hear you are going well and very happy to hear you are hitting the 70.3! I’m going to get some flax seed oil today in your honour and see if I can extract some benefit from it.

      Ive been involved in tri/IM since mid nineties in Australia and seen it from all angles : competitor/official/coach/national governing body.

      Which 70.3 are you entered in? Please give it your best. Swim like there’s no ride. Ride like there’s no run and run like there’s no tomorrow!

      Ride safely too please.

      • Ken July 21, 2013 at 3:26 pm #

        I also use Krill oil, and Boswellia. They are anti inflammatories too. I think the Glutamine has the greatest effect though.

        I’m signed up for Galveston next April. I’m good on the run and bike, so I have the next 9 months to get my swim up to speed.

  2. Mark from Boston
    Mark July 18, 2013 at 4:33 pm #

    Craig,

    Sorry to hear of your situation, but I have some good news for you – I have literally just gone through a round of at-home FMT treatments and saw results almost immediately. My wife was my donor, which made the whole process that much easier, and I was able to start the treatments daily for about a week, then continue on every other day for another 2 weeks or so. I would say that within about 10 days I went from going ~4 – 6 times a day, and seeing blood in every BM, to going maybe twice a day and almost completely normal BMs. I may just be lucky, and in the minority, but I have found the FMT to be a life saver for me.

    Prior to starting, I was on 250mg/day of azathioprine, 15mg of prednisone, and taking a number of other supplements as well. I haven’t stopped taking any of the other meds that I was on, but I know for sure that the FMT treatments is what turned the corner for me. When I have more time and am a few months into feeling better, I will do a more comprehensive write-up for this site, for anyone who is interested in reading up on my experience. Please keep us updated on your progress, I really hope that this helps clear your symptoms and puts you into remission.

    Mark

    • Craig July 18, 2013 at 5:53 pm #

      Hi Mark. Thanks for taking time to say hi.

      I’m really struggling at the moment. I’ve done 13 infusions with Prof Borody in Sydney and now have done 4 at home using my wife as donor. I’m getting my head around the interpersonal side of it but for me it’s very much a mental battle I’m having to retrain my brain for (only someone whop’s done it will understand).

      I have definitely had progress although many stumbles too. Prof Borody warned me that the progress would be slow as the inflammation I have is severe and circumferential (meaning that the new bacteria cannot populate or colonise the heavily inflamed area at all). None the less we are still doing them at home. Had a great day two days ago where I was almost normal and then I stayed up watching the tour de france and ate a small bag of chocolate almonds then BOOM.

      Prof Borody’s team have been fantastic and more supportive than I could ever have hoped for. They make you feel as though they are with you all the way and have gone to great lengths to follow my progress and think of novel ways of assisting me. The head nurse with the probiotic research side (Sharon) is extremely experienced and her opinion is that it will take a good two months or so to gain full momentum. They’ve had several patients worse than me who have recovered, some needing 2 months of daily infusions.

      Whatever the need is – I don’t want the surgery unless we’ve exhausted every option and there’s no other way.

      Currently Prof Borody wants to give me a couple of doses of this Remicade to quell the inflammation and allow the new FMT bacteria to take over from the pathogens (which they are only doing slowly/can’t do because apparently the inflammation is forming some form of protective layer for them).

      I’m a little bit freaked about Remicade and the use of a strong biologic drug. Most people seem to do well on it, but my main concern is the unknown effects of a drug used to inhibit the immune system (ie find out I have lymphoma or cancer in ten years). I’m praying that I have some sort of a miracle turn around in the next two weeks before this Remicade and I end up being able to refuse it.

      All the best and I’m sure the more everyone is able to contribute to Adam’s site (the Knowledge pool) can only benefit the world’s population of long suffering UC’ers.

      Cheers

    • Colleen July 19, 2013 at 12:51 am #

      Hi Mark,

      Congrats on your road to remission. That’s awesome. Would you mind posting any useful links that you used for the actual step-by-step procedure you followed? I know there is some good info on this site, but I’m looking for even more specifics. Also, can you tell me if all your symptoms have gone away? You wrote that your BMs have normalized, but do you still have cramps or see any blood when you go? I’m loving this patient-led FMT revolution going on. Thinking of jumping on board, even though I’m inching toward remission with supplements and diet. The idea of this just being gone though after a few weeks of FMT is just too tempting. (Very little grosses me out anymore after dealing with UC symptoms for 2+ years.) Anyway, in the info gathering stage and would appreciate any references you used that are easy to share. Thanks so much.

      • Mark from Boston
        Mark July 19, 2013 at 7:56 pm #

        Colleen,

        If you are considering doing FMT, then you’ve presumably done a fair amount of online research about it and have likely come across all the websites that I did. These are a few that I relied on heavily when looking into it:

        http://www.fecaltransplant.org/

        http://thepowerofpoop.com/

        Fecaltransplant is the website of Michael Hurst, who posts on this site quite a bit. Have to give him a huge shout out for the wealth of information on this topic that he has provided to the masses through his website.

        My incredibly helpful and supportive wife was my donor, and did all of the preparations herself. She’s a nurse, so the “ick factor” was never really an issue, and ultimately she just wanted me to get better. I believe that she followed the treatment guidelines found on this site (which is linked to in fecaltransplant.org):
        http://www.naturaldigestivehealing.com/blog/2011/02/06/bacteriotherapy-summary-post/

        In my mind, it was a no-brainer to try it. I lost 30+ lbs in 7 or 8 months, and I wasn’t a big guy to begin with. The azathioprine was helping a bit, but wasn’t bringing me into remission. My options were either start Humira or consider surgery, neither of which appealed to me, so I thought why the hell not.

        We were able to do treatments every day for about a week, then did maybe 5 in 7 days the next week, then about every other day for another week. By the end of the 3-week span, I was significantly better, gained back about 6 or 7 lbs, and was starting to feel like a normal person again. At that point, July 4th week was upon us and we were traveling, then I followed that up with a week in Mexico with a work engagement, so we’ve been unable to do a treatment now for about 3 weeks. I have noticed a slow regression back with my symptoms, but I think that is to be expected since I was not yet fully healed after the initial 3 weeks when we started. My plan is to try and resume them again and do 3 – 4 per week for a couple months – basically as often as we can within reason. We have 2 kids (2 and 4mo old) so pulling this off and working a full time job is not exactly a simple task. Fortunately for me my work is flexible and I can work out of my house a few days a week if necessary.

        Just like with medication and diet, FMT isn’t going to work for everyone so my case is just one of many. My belief is that our condition is caused by an imbalance of bacteria in our gut. Getting the right mix of bacteria back into you could be a solution to reverse the symptoms and get your system back on track.

        The one thing that I would recommend considering when you do the actual treatments, make 2 of the fleet enema bottles. I was finding that when I would do the first one, more than half the time, my body wasn’t too excited about taking it in and I would have to go to the bathroom right away. That actually helped clear me out and made the next try a few minutes later that much more effective.

        Good luck to anyone out there who is going to give this a shot!

        • Craig July 21, 2013 at 2:55 am #

          Hi again mark.

          Can you tell me your specifics as they relate to UC if you don’t mind?
          Length of colon involved and severity,
          Length of time since your initial diagnosis of first symptoms,
          If you’ve had a scope since FMT?

          Just trying to come up with my own theories on how quickly mine might be repairing based on your experience.

        • Colleen July 23, 2013 at 2:03 am #

          Mark, I am just seeing this now. Thank you for all the information. I have been on all those sites but it’s good to know that the information has been useful to you in your FMT. Thank you for also sharing your update.

          I’m actually doing pretty well in my healing using supplements and diet. I’m not sure if I should just stick to the slow road, feeling a bit stuck and impatient as of late, or try the FMT. And maybe because my flare is not too awful at the moment, the healing will be significant. That’s my hope, anyhow.

          Thank you for the tips as well. I look forward to reading your story when you decide to post. I’m not in a rush to start FMT and may wait until the weather cools down. Plus I’m one of those people that likes to be very over-prepared in my research. So I may be back bugging you then for more details when you do post your story!

          Best to you.

      • Craig July 21, 2013 at 2:41 am #

        Hi Colleen. I’m very happy to give you my for home FMT if you would like it. Just let us know.

        • Colleen July 23, 2013 at 2:08 am #

          Hi Craig. Any information is much welcomed. Thank you. It’d be interesting to hear how Dr Borody suggests approaching it. How’s the at-home going so far?

    • Caroline
      Caroline July 19, 2013 at 5:39 am #

      Mark, that is awesome news!!! Congrats and I hope you keep feeling better and better.

    • bev July 19, 2013 at 7:32 am #

      Now that is fab news Mark!!

      Love to hear more and more about FMTs!!

      :)

    • Jamie April 5, 2015 at 6:17 am #

      Hi Mark,
      I would like to hear more from you regarding FMT. I have been taught how to do this and want to hear more about your experience. I hear fresh it better, but how long can you keep it in the refrigerator because of course I have to work and then do the transfusion at about 6:00. I am unsure if it would be better to freeze it. I would like to hear what your timing is, since you have had success and do you still have success since you wrote this two years ago?

  3. bev July 18, 2013 at 5:42 pm #

    Man, this condition sucks, Craig.

    I do not think that remicade, or any other drug prescribed for UC, for that matter, is safe. Just my opinion. All you have to do is read about the possible side effects…just the liver and kidney damage themselves, give me pause. My opinion only.

    As for FMTs….I think that is absolutely the way to go!!

    Cheers, nad let us know how they work for you…I think they will!

    Bev

    • tim123 July 19, 2013 at 9:15 am #

      Hi Bev,
      Do you take LDN, astaxanthin also?
      When do you take LDN and astaxanthin daily ?

      • bev July 19, 2013 at 1:59 pm #

        I do, Tim! I take both.

        I take the astaxanthin at lunch…with fat…it is best absorbed that way.

        I take the LDN at bedtime. I am on 3.75 dose.

        Cheers
        :)

        • Tim123 July 20, 2013 at 8:52 pm #

          Thank YOu Bev.

          • bev July 20, 2013 at 10:16 pm #

            :)

        • UC Family Boy
          UC family boy July 23, 2013 at 1:29 am #

          Bev,

          randomized controlled trial involving 130 UC patients from Ontario at St. Joseph’s Hospital in Hamilton is soon underway. I don’t know if this is near you or if they have already recruited but worth looking into. They done a small scale test on 8 people with 7 benefiting. The large test is to see by using 2 donors why it works for some and not others, and try and locate what bacteria could possibly be causing it…

          • bev July 23, 2013 at 6:55 am #

            Really?! That’s great news!

            I’m on the other side of the country (west coast) but I am still beyond thrilled that the studies are being done. As soon as I can get into one…I would and I will! If they’ll have me…

            Thank you UC family :)

  4. Emily July 18, 2013 at 6:05 pm #

    You can’t do short treatments of remicade because there is a possibility that you develop an allergy to the medication. I was in a constant flare for 2 years. I got a new doctor that put me on imuran and lialda. I am almost living a normal life. I can actually walk into a store and not have to obsess about where the bathroom is. The fecal transplants sound awesome. I wouldn’t feel ashamed about having colitis. I would find a nice support group through the CCFA. It’s nice to know that there really are others out there that understand.
    Emily

    • Craig July 21, 2013 at 2:45 am #

      Thanks Emily. Us guys seem to like to ride the road solo sometimes. I’m so embarrassed about it quite a lot of the time. I tried to hide it from my wife, but two months ago things got so bad there was no choice. All the best. Craig

  5. Joanna July 18, 2013 at 6:53 pm #

    I think remicade could really help. Granted, the remission probably wont last long but it will buy you some time to try other treatments. I have tried both remicade and fmt with no success so im still looking for remission. Good luck! The at home fmts are pretty nasty and smell terrible so definitely do them with an open window, fan, and face mask!

    • Craig July 18, 2013 at 8:13 pm #

      Hi Joanna.

      Sorry to hear about the FMT. May i ask how much of a flare you were in when you tried it and how long you did it for?

      • Joanna July 20, 2013 at 11:28 pm #

        Hi craig. I was going about 7x a day, usual crampy poops. After the first fmt, it was consistently 18x a day. It was so noticebly bad that i would be very cautious of trying it again unless a doctor performed it in a hospital. I did 8 transplants total but some were a few days apart. The whole process was probably two weeks.

  6. David July 19, 2013 at 3:22 am #

    Hi Craig,

    I too am a keen athlete and have had UC for the last 4 years with 3 hospitalizing flares. The only thing that has worked for me is Remicade. I have a short course whenever things get really bad and it brings me back to normal almost immediately. It is difficult to confirm long term side effects but as stated above non of the treatments are safe. But I would rather risk it at the moment as I too have a fear of surgery.

    I would recommend trying the Remicade as it could really improve things for you. It’s up to you if you want to risk it.

    Also good luck with the FMT. It always gross’s me out but maybe it is something I will be trying in the future!

    Stay strong and keep fighting!

  7. Colleen July 19, 2013 at 5:26 am #

    Craig,
    I just want to address your concerns about the effect all of this may have on your marriage. Your fears are completely understandable, but it will be OK. Your wife is your wife to support and love you through it all, even the most vulnerable of moments. Most of us on this site have put our spouses through the wringer with our UC moments. And our marriages have survived, thrived, and grown stronger as a result. This is why we choose the partners we do–because the bond between us is strong enough to see each other through even the messiest of times. And when a partner can’t handle this kind of stuff, they’re not going to be handle a lot of other things down the line either, and it’s better to find that out sooner rather than later. Not that this will be the case for you. I’m sure your wife will surprise you with her ability to adapt, deal, and rally with you through the FMT and beyond. I am sure that all she wants is to see you get better. Humor is a great way to conquer the uncomfortable moments that UC thrusts upon us; the only way to conquer them on some days! Tell your wife that she’s lucky she doesn’t have to be your stool donor (as spouses are often the first donor stop)! Anyway, you’ll get through this and she will be part of the reason why, but you have to let her in and let her be there for you. Put that trust in her. Best wishes to you both.

    • Craig July 21, 2013 at 6:01 pm #

      Hi Colleen. Thanks for your kind words. It’s good to hear from youu at a time like this. And also yes she is my donor! LOL

      Man I hope this FMT works.

      • Colleen July 23, 2013 at 2:25 am #

        Oh so she’s not spared the donor card! Baptism by fire it is then. Remember humor is definitely your friend. Hope things are going well so far, on all fronts. Keep us updated on your progress.

  8. Darla July 19, 2013 at 12:29 pm #

    I never heard of FMT until I found this website. Humira is what I am on right now. It has been a long slow road though as I have been on it since March and not in remission yet but alot better then I was. I guess others had a bad reaction to it though but it is another option which I didn’t see if was something you were given to try.

    I have a great boyfriend you has been a great support through all I have been through, even cleaning up the floor when trying to get from the bed to the bathroom. He stayed with me during my 3 1/2 weeks in the hospital.

    I wich you the best and that your wife is as supportive as my boyfriend has been.

  9. k July 19, 2013 at 4:13 pm #

    Hi Craig, I don’t know if it is the thought of it or if it is the regulations for being a pilot, but if the former, please don’t fear having a “bag” [ileostomy]. I have had one since before you were born, and it is much better than having uc and a flare. Living with uc would take a courage I do not have. Living with a “bag” presents some challenges, but they are more mechanical than medical. And, of course, there is now an option not available when I had my surgery – the j pouch.

    • Craig July 21, 2013 at 2:53 am #

      Hi K. Thanks for stopping by. I can’t have an ostomy bag and continue to work as a pilot unfortunately. I have always been around aviation and the airlines pursuing my passion and I’m praying it doesn’t come to surgery as Im not trained in much else and will feel like I have failed somewhat in my career. I’m putting my chips on the good Professor Borody and hope he will come through for me. His statistics are great.

      Out of 66 patients treated (specifically with UC and only UC) 91.9% have shown response.
      67% achieved complete clinical remission
      25% had partial response
      8% were treatment failures or no response.

      Having spent much time with Prof Borody, It’s great to think that there are people out there who are confident that within a few years there may be a better understanding of the gut flora as it relates to UC and a lasting cure deliverable (via pill) rather than backside (currently).

      • Ella January 21, 2015 at 8:27 pm #

        Hi Craig, thanks for the hope. I am searching for any information on treatment protocol by dr. Borody. I think his ideas will bring future treatment on a different more favorable road for all of us. Some of his patients take antibiotics. Please tell us more about your treatment with him. Do you take antibiotics? How is FMT is going for you?
        Thank you!

  10. shelly in maine July 21, 2013 at 7:55 am #

    Hey Craig,
    Just fyi…I think most of the others who have done fmt have also done SCD. You can search others stories on this site and reply to them directly if they don’t see your story.
    If you can do ironmans, etc, you can put your mind to anything I’m guessing….that is the ultimate mind over matter!

    Also, you should read the book…Breaking the Vicious Cycle…the science makes tons of sense…there is another great site….pecanbreadstages…you have to go very slow. Also, SCD lifestyle and of course, Adam’s books.

    I asked my Dr. Last time I went to see him about just being able to get fluids, etc without gong to hospital and he said absolutely…great idea to stay out of hospital where we are more susceptible to intestinal germs in hospitals.

    By the way, the remicade and other meds in that class you generally cannot go on and off so you may want to save that in your back pocket. I am a uc lifer(45 now) been through all the meds and been Med free for 2 years, with 2 major flares…so there is hope. :-)

    Good luck and stay positive and determined.
    Best, Shelly

    • shelly in maine July 21, 2013 at 7:58 am #

      P.s. Craig…read some of those positive surgery stories…surprisingly it will help put your mind a bit at ease, less afraid and probably more determined to fight for UC battle ( cause UC is a war)…success! :-)

    • Craig July 21, 2013 at 5:59 pm #

      Thanks Shelley. Nice to hear from you.

      I’ve sent my gastroenterologist an email querying the Remicade and if we can hold off on it and give the FMT time to work it’s magic. I think he wants to use it to assist the FMT by reducing the inflammation to allow the new bacteria to re-colonize the 30cm I am inflamed. His logic (Prof Borody in Sydney) makes sense to me but I have heard (as you pointed out) that once removed from Remicade, you can’t go back on it – thereby impying surgery is the only thing left.

      Accordingly, I asked him for what chances he gives me of a sustained remission using the Remicade as a sparing therapy for the FMT to work and asked if it was prudent to do another short colonoscopy to inspect the change since FMT’s and make another Remicade assessment after those findings.

      Man the steroids are hitting me hard today. I can can either think totally clearly (1,000 mph) or not at all.

      All the best – the long suffering Craig

      • Jessica
        Jessica August 5, 2013 at 5:07 pm #

        Hi Craig,
        So sorry to hear you are going through a bad flare. I hope the FMT is working for you! I see that you are concerned about possibly starting Remicade. I’ve had colitis for 25 years, most of which were under control, until this January. It is amazing how fast the body can deteriorate. I tried and did not react well to the ASA drugs, was put on prednisone, and was at the point of being hospitalized before finally agreeing to Remicade in early May. For me, Remicade was a miracle. Within 24 hours, I had no symptoms of colitis. It gave me my health, and life back. I was able to eat normally again and get back to running and working out. I will say that after my third dose (3 doses are done within 6 weeks as loading doses), my hair starting falling out profusely. I did not get my 4th dose due to this however, without Remicade, I don’t know how I would have made it a day longer. I am just hoping my hair grows back!
        Wishing you good health,
        Jessica

        • Craig August 5, 2013 at 7:03 pm #

          Hi Jessica. Thanks very much for sharing your story with me (us). I’m at quite a low point now and I’m doing everything I can to avoid getting this cut out! It’s wonderful to hear you are reclaiming your life. I think the loss in quality of life is well and truly one thing we all share at some time with this illness.

          I was only reading through the Remicade info again last night. In Australia a patient never normally has to sign a waiver on taking medicine so this alone stands out before you even start reading! Your story has given me another little bit of hope that it will work so thank you.

          I’m still doing FMT and been doing limited SCD with varied results. The home FMT is tricky to organise when your donor (wife) works shift work – she hasnt been able to help the last two days with her work hours. Still bleeding heavily 6 times a day but hoping the new bacteria are slowly ‘overcrowding’ the bad guys. As prof Borody and his staff have been telling me, in severe cases its a long, slow painful process which doesn’t have a linear recovery. As we all do, one gets sensitive to symptoms and I just wish I had the tiniest little bit of good news!

          Great to hear you are running. Man I can’t wait. The life I will live once this is over will be something else! I guess that’s the positive way we can look at things…. We live a fuller life afterwards. Most people take their health for granted – I doubt UC champions won’t!

          Cheers again.

          • Michael Hurst
            MichaelKHurst August 6, 2013 at 8:27 am #

            Hi Craig,

            While coordinating with your donor can be tricky, poop can be stored in a plastic container in the refrigerator for 6 hours. A doctor in Minnesota that spoke at the Human MIcrobiome Conference also uses frozen stool so that is a possibility too to have some of that in reserve.

            Also for heavy bleeding and ulceration the protein shakes (Muscle Milk or other whey body builder’s protein) were very helpful for me to finally start healing up the ulcers. I was taking about 3 shakes per day with 30 grams of protein each.

  11. UC Family Boy
    UC family boy July 22, 2013 at 9:09 am #

    Hi Craig,

    I’ve read one story of someone who did FMT and was 100% fine until he had to take antibiotics for a sinus infection, UC flared and did theFMT again and was fine and ended his post saying he will not take antibiotics ever again.

    I sense FMT works, we are all individual and would require bespoke number of infusions to beat UC. Some have a small but aggressive form of UC while others might have a larger set of the disease but did well on a hand full of FMT. Bringing down the inflammation is first key, I agree with this. I want to do the infusions but am also planning for it so it is done at the best state. So am waiting for flammation to go down and also for the right donor (currently testing my brother). I sense a gut imbalance, leaky gut is the root to the problem. I also link my older brothers artithis to a leaky gut, which was backed up by a paper I am currently reading.
    My other older bro has been taking remicade for 10 years now and doing fine. I feel if you have been suggested this than consider it please, anything to help FMT work.

    Yets not forget the work we must do after the transplant is equally as important than just the infusions. The right diet, supplements, Meds will all make life without UC after FMT more likely

    • shelly in maine July 22, 2013 at 9:54 am #

      hey UC family boy,
      Do you happen to remember which antibiotic? I’m in a similar boat and scared to take antibiotics. My Dr. and i tried to give it a couple of extra weeks, but ended up spreading from double ear to sinus. It has been probably closer to 4+ weeks now. It is amoxicilin which he explained is the least likey to effect the gut bacteria.
      Hope you are getting closer to your goals.
      Thanks, Shelly

      • UC Family Boy
        UC family boy July 22, 2013 at 1:21 pm #

        Hi Shelly,

        I don’t recall him mentioning which antibiotic it was. He glossed over it as the focus was on FMT working so well – il see if I can locate the blog again and check.

        I would be aware of any antibiotics personally thou. My sis has IBD also and been fine on pentasa for 10yrs no symptoms… But earlier this year she was prescribed antibiotics for a bladder infection and ever since she has been fighting a flare and put on prednisone for her first time ever. I also got UC after 3 straight days of antibiotic use after drowning in Miami

        I don’t know much about sinus infections, I hope you improve. Just remember any antibiotic is meant to kill bacteria so for us UCers we must be super careful

        • shelly in maine July 22, 2013 at 4:06 pm #

          Hey UC,
          Thanks so much. I ended up going to my chiropractor today, still in a panic over taking the antibiotics, and he gave me some anti bacterial herbs. So I’ll give it a try and have the antibiotic filled. I’ve never taken it before and have only been on antibiotics twice. Recently got out of another long 8 month flare and always feeling like I’m on the brink, but going on 2 years no meds!
          I know your journey has been up and down. I’m not sure if you had posted some info you were going to share a whopile back, I may have missed it, but just wondering.
          Hang in there…stay positive!
          Best, Shelly

          • uc family boy July 30, 2013 at 3:50 am #

            Hi Shelly,

            Sorry to come back so late, but I couldnt find the brand or type.
            Hope you are doing well

  12. Michael Hurst
    MichaelKHurst July 24, 2013 at 3:10 pm #

    Craig,

    While the fecal transplants may seem weird at first you do get used to them. Your wife’s involvement doesn’t have to go beyond giving you the sample if you want and I’m sure she is already used to living with you dealing with Ulcerative Colitis.

    You have reason to be concerned about Remicade, while it appears to work well for some people the side effects are potentially dangerous. For me it contributed to two different secondary infections which required trips to the hospital, the second time for 4 days. In rare cases it can also cause an aggressive form of Lymphoma. which has caused people to die.

    However cancer is considered very uncommon. In my experience over an 8 month span, it sometimes worked for a few days to a week but was otherwise not very effective. The one time it was most effective was when the dosages were only spaced two weeks apart it was effective for about 9 days. So it might help make the fecal transplants work.

    As an alternative I would try Wellbutrin (Bupropion) in the immediate release form. There is some research that it acts to inhibit TNF-a like Remicade, but with fewer dangerous side effects and the drug company Glaxo Smith Kline did initiate a study that went to stage 3 trials on its use for Crohn’s Disease however never published any results.

    It was the addition of Wellbutrin and another anti-depressant sometimes used to treat diarrhea-predominant IBS which helped the fecal transplants finally work to cure my case of Ulcerative Colitis, two years ago yesterday! I’m still symptom-free without taking any drugs either. I cover this on my website http://www.FecalTransplant.org and my book in more detail.

    In the meantime I am at the Human Microbiome Conference in Bethesda, MD, USA for the next few days. So I could also ask some of the researchers here about your case as well.

  13. Craig July 24, 2013 at 4:10 pm #

    Hi Michael.

    Thanks for a very informative post which I certainly appreciate you taking the time an having the interest to help another in need.

    Sounds exciting to be at the Microbiome conference! I’ve just had a look on the net and it looks quite interesting. Sounds like you are a great pioneer for this damn awful illness. In some way we are all connected as kindred spirits.

    I’m suffering badly at the moment and the FMT is a battle of getting better (seemingly) and then worse and then better again. I’m sure theres a component with mental/gut nerve/physiology. As I’ve said, I have thi recent flare for four months of severe UC to 35cm two weeks ago and have generally been consistently poor on 20cm oral prednisone. As you know there’s a view to add Remicade to enable FMT to work better (maybe now Wellbutrin as you’ve mentioned). History for 15 years with three flares increasingly more aggressive in nature each time. Attempted treatment with triple antibiotic therapy which didn’t do very much at all except landed me in hospital with an infection where I’ve never had one before!

    As it sounds as though you have a very scientific and knowledgable mind, I’d love to know if you have any thoughts or information on these;
    1. Have micro-biome researchers come closer to identifying any more specific pathogen bacteria present in patients with UC (additional to Fusobacterium Nucleatum)
    2. Apart from the current study in Ontario, is there any other micro-biome related research underway to identify why FMT seems to work for some cases of UC and not others (i.e. is it a problem of treatment flaws or an issue of dealing with multiple pathogens causal to UC and possibly dependent of geography?)
    3. What rough timeframe do researchers expect we will be able to influence direct levels of bacteria in the micro-biome? (i.e. in our lifetime?)

    Great to hear form you Michael. Catch you soon. Cheers

  14. Michael Hurst
    MichaelKHurst July 26, 2013 at 3:42 pm #

    Hi Craig,

    Thank you I do feel like I’ve been a pioneer. Now to continue to get the word out there. There are now 12 research studies ongoing using FMT for Ulcerative Colitis. I can say Remicade contributed to me getting a leg skin infection on my leg and a boil in a sensitive spot approaching my groin area. How do you know antibiotics contributed to your getting secondary infections? I would say it is more likely that immunosuppressant drugs like Prednisone and a weakened immune system caused by anemia would be more likely causes.

    I have some answers from the Human Microbiome Science event. In the opinion of one doctor I interviewed the current definitions of Ulcerative Colitis and Crohn’s Disease do not adequately reflect the variation in types of this illness from one person to the next. The future is going to be individualized treatment as our current treatment options are blunt rather than tailored to the individual case and microbiota.
    1. There was tons of research presented about a wide variety of illnesses and bacteria which can contribute to those illnesses, however nothing specific presented for a cause of UC. However the best answer I got to this question during one of the interviews I did this morning was that UC is widely variable and dynamic such that there most likely that this will vary from one person to another.
    2. One of the doctors who presented said there were 12 studies going on right now. I didn’t get too many more details except that there is one at McMaster University in Canada which is not open to U.S. citizens. So I will research. One reason a flare may occur during FMT for UC is because of the damage to the gut barrier. However otherwise there is a lot of variability between one UC case and another so it is hard to compare one case with another even if your treatment methods and donor were the same.
    3. There were no timeframes but there was substantial research reported on every aspect of the human microbiome in many different areas in the body and for many different purposes. However that are making a lot of progress on many fronts very quickly so yes within our lifetime and even the coming years many major developments will occur. I spoke to the woman who is leading the research into rePOOPulate, the standardized fecal transplant mix to treat c. diff. Unfortunately they are slogging their way through regulatory hurdles and also trying to get more funding because they don’t want their research to be constrained by developing it for a bio-tech company. However the robopoop machines are hard at work, and continued experimentation is ongoing.

    • Craig July 27, 2013 at 3:55 pm #

      Wow thanks for that info Michael. It’s wonderful to think that your overcoming of UC has driven you to such lengths to research this yourself. May I only encourage you to continue on your path – Its a wonderful concept to think that your journey has taken you from from one end of the spectrum to the other. Well done.

      I will pass on your findings to Prof B when I see him next week. At this stage we are four weeks into daily FMT and after initially improving, have now seemed to go backwards. I was only thinking that my pain feels a lot like the IBS symtpoms I had of two years ago and will relay that info to the Prof for his comment.

      Prof B has organised to do a short colonoscopy (wihout the bowel prep) so we can have a look see how the inflammation compares to a month ago and then decide about the need for TNF blockers (Remicade or as you’ve suggested Wellbutrin). I have suffered with a high degree of anxiety most of my life after a traumatic childhood. I would like to think that I’m quite a rational and emotionally vey stable person, but often find myself getting strange bouts of anxiety. Not sure if that’s the Predisone/Inflamed gut acting on brain or some sort of PTSD/(or that I’m just fed up of the lifestyle of 24 hr work and a full lifestyle alongside renovating etc!).

      I’ll be in touch after my appointment with Prof Borody and relay back to you what I find out. He’s a wonderful physician and he surely has a passion for this.

      All the best – chat soon.

  15. uc family boy July 27, 2013 at 6:56 am #

    Hi Craig,

    I have some thoughts to FMT and your treatment of it. Firstly congrats on giving it ago, I am yet to do it but am very keen.

    The thing about FMT is some papers say to have an unrelated donor (I have seen this work for some) while other papers suggest a relation due to sharing germs (and possibly pre IBD set) and likely to colonise (also worked for some), while some clinics do the transplant via colonscopy and others think best from an enema. I have even discussed with people on trials of FMT whom have got worst on placebo and than saw no response on an actual donor FMT which in my opinion questions the truth of the final results of the clinicial test, this has also in the same sense made me question all the successful trials.

    I guess what I am getting at is, we are a million miles from understanding why FMT could work. Its still closer to a thoery than a solution still. Nonetheless FMT to me still seems the closest place to find a true answer to solving IBD so stick in there.

    For you possibly, a treatment of FMT now followed by maybe Remicade (possibly also diet) and than a future infusion of another round of FMT could be the answer than a set of FMT now only.

    I feel Procedures like FMT is just as much about re-training the immune system than just repopulating the microbiota.

    • Craig July 27, 2013 at 4:03 pm #

      Hi there UC family boy.

      Thanks for stopping by. I’ve now done four weeks of FMT treatment (2 with Prof Borody in Sydney, AUS) and two at home with my wife. I’m amazed at some of the hurdles and barriers I’ve had to break down to enable me to ‘click’ to the concept. I can only suggest for future UC’ers contemplating it that you need to focus on the reward – not the images/smells/emotional concepts. It really is mind over matter – something I’m lucky to have drawn in ultra-distance sport earlier in life.

      In about a week I will have a short colon (without bowel prep), where the Prof will have a look to re-access inflammation and then administer Remicade or a TNF blocker to reduce inflammation (and hopefully allow new bacteria to colonise that area). I don’t necessarily want to receive such a drug, but as one gets further down the road in terms of severity, the decisions become more difficult and there is a need to access the pros and cons of any such decision. Again my best advice in terms of treatment (from my thought processes from work) are that the best information results in the the most options and in turn allows a fully informed decision.

      I will report back after my meeting with the Prof. As I’ve said earlier, he’s a fantastic person and a pioneer for the micro biome fixing such issues.

      All the best to you and your family.

      • UC Family Boy
        UC family boy July 28, 2013 at 5:45 am #

        Hi Craig,
        Yes keep us all updated. This trial I refer to is the one recently ran in Canada and they used ppl in a flaring state and the two I got to discuss this with seem to find it didn’t work for them, so maybe a none inflammated state could well be the best state for it to work.
        Thanks for the advise on the procedure, I didn’t overly think about the mechanisms of it but I heard some Vicks under the nose is a god sent. If I ever get around to doing it…and I will I am sure, I will blog it. At the mo the only place in the uk that does it, charges £4k, only use a small amount on each infusion and does it via an enema. So I thought I could do it at home as he offers no difference.

        I heard Dr. Brody is a top guy, jealous slightly you get to work with him.lol. I hope you get to remission with FMT.
        Speak soon

  16. PeterNZ July 27, 2013 at 5:12 pm #

    Have you discussed Methotrexate with your doctor? or Cyclosporin?

    • Craig July 28, 2013 at 6:20 am #

      Hi Peter.

      Yes have discussed Cyclosporine and understood it is the last line of defense – I’d like to think we aren’t quite there yet! After me year, there’s a ridiculously high % (I beleve in the vicinity of 80%) that require with colectomy. Have you had any experience with these?

      Haven’t discussed methodextrate but will ensuite with the prof next time I see him. He’s got a few other tricks up his sleeve he says anyhow. Prof Borody states less than 1% of his patients require surgery which is something I’m trying to keepin my head.

  17. lana August 10, 2013 at 12:23 am #

    Hi Craig, thank you for sharing your story and your progress, it great to know that prof Borody is that good. i went to see him last week and he suggested FMT and i cant wait to start it, but he put me on antibiotics for two months before that. did you have to take antibiotics, if so did you have any side effects? i am just unsure about that and cannot understand why i can’t do FMT without antibiotics. anyway good luck with your FMT and i hope you getting better

  18. lana August 10, 2013 at 2:35 am #

    hi Craig, thank you for sharing your story. i’ve been looking for people who had prof Borody protocol done as i am unsure what to do. he said that i have to have antibiotics for 2 months before i could do FMT, i don’t have c diff only UC. did you have to take antibiotics before your treatment? if so did you have any side effects? i am scared because i never had so many antibiotics in my life. i managed to achieve remission with diet and supplements and am sure that antibiotics will wipe out any good i’ve done for myself. so it would be nice to know what to expect.

    • Michael Hurst
      Michael K Hurst August 11, 2013 at 7:23 pm #

      Iana,

      I did fecal transplants without doing a course of antibiotics immediately before starting them and have been able to achieve a sustained absence of UC for 2 years now. I have now been free of UC symptoms for two years without any ongoing treatment with anti-inflammatory, anti-biotic or immune suppressing drugs. So I can say that at least based on my case FMT can be done successfully without using antibiotics first at least for some people.

      However I can say that for my case the antibiotic Cipro was effective at driving my initial flare in 1999 into remission when even 60 mg of Prednisone was not enough, so I wonder if it might have been helpful immediately before starting FMT. While I tried to do FMT by itself without any drugs to assist me, ultimately I achieved my success by adding a combination of anti-inflammatory, immunosuppressant and anti-depressant drugs to the mix.

      • lana August 12, 2013 at 3:35 am #

        Thanks Michael, i think i am going to ask my doctor if i could skip the antibiotics and see if FT will help.i think what he is trying to do is getting me out of flare so the good bacteria have a better chance of survival, so i think if i can achieve symptomatic remission without the antibiotics he might agree to do just FT

        • Michael Hurst
          Michael K Hurst August 12, 2013 at 10:00 am #

          Hi Lana,
          As I said if you want to skip antibiotics FMT could still work, however I think using them could be helpful and could reduce the number of fecal transplants that are needed and reduce the amount of other drugs like Prednisone which may be needed to make this work. I think you doctor is on the right track if he thinks that antibiotics could get you out of a flare and help facilitate the establishment of good bacteria. As I mentioned Cipro is used for treatment-resistant flares of UC and brought my initial flare into remission in 1999. At another point Vancomycin helped drive a flare into remission about a day after I started taking it by IV in the hospital about 9 months before I almost had surgery. Then as my surgery date approached I was able to completely taper off of Prednisone once I started taking high amounts of protein shakes to restore protein stores in my body that were depleted by near chronic flares and by not eating enough. So antibiotics and also protein shakes at different times appeared to help me get a flare into remission which was resistant to Prednisone.

          While I did the FMT without pre-treating with antibiotics or other drugs, there was a significant price to pay which I wonder if I could have avoided. I did FMT for 5 weeks, I went back on Prednisone, then finally added back Apriso, mesalamine suppositories, and added in Bupropion 3 x 100mg Immediate Release and 6 mg Silenor (Doxepin.) To this day I wonder if a course of antibiotics first could have helped FMT work more quickly without a flare in the middle. Based on what I know now, and that any drugs used to facilitate FMT need not be permanent once the gut has sufficiently healed, I would say adding drugs in pre-emptively is worth trying.

          Based on reports from readers of my website, and what I learned at the Human Microbiome Conference 3 weeks ago, fecal transplants often appear to cause a flare in the short term when treating UC or in the short term make a flare somewhat worse for a time if the gut is inflamed such that the gut barrier has been damaged. However this will pass if some kind of drug treatments are used to suppress a flare as I did in my case and some readers of my website have done too.

          If you want to limit drugs while stopping bleeding the supplement that was most effective for me was high amounts of protein shakes (I used Muscle Milk, however other pre-digested whey protein shakes could help too. They could be an alternative to high doses of Prednisone and could help you get into a better state going into the fecal transplants. I think the anti-depressant drug Bupropion which inhibited TNF in lab testing with mice is a better alternative than antibiotics or Prednisone in terms of lack of side effects and effectiveness. It was the addition of this drug 6 weeks after I started the fecal transplants which appeared to finally bring my case of UC into what I consider to be a permanent cure.

          Whatever approach that you use, I strongly believe that for the fecal transplants to work for UC a combination of treatment approaches need to be used accute inflammation from a flare needs to be suppressed, adequate nutrition has to be available to quickly heal the colon and the gut barrier and the gut flora has to be permanently altered past the point of resilience in the bacterial colony to go back toward its pre-FMT composition. While skipping antibiotics won’t necessarily prevent fecal transplants from working, the trade offs may include having to do the fecal transplants for longer and / or the addition of even more drugs similar to what I faced.

          Also just in case you haven’t read this here is a link to Dr. Borody’s article “Treatment of Ulcerative Colitis Using Fecal Bacteriotherapy” http://www.cdd.com.au/pdf/publications/paper17.pdf Dr. Borody’s case studies make it look so easy, was it because he had the patients do a course of antibiotics before starting FMT or because most of them were still taking other anti-inflammatory or immunosuppressant drugs up to or for some weeks post-FMT? It’s hard to say.

  19. lana August 10, 2013 at 2:37 am #

    oops, didn’t see that previous post was awaiting moderation, sorry about that

  20. Craig August 11, 2013 at 10:33 am #

    Hi Lana. I take it you are in Aus? I would be happy to chat more but best privately for specifics if that’s okay. Can u give me an email address?

    • Joan November 8, 2013 at 6:23 am #

      Craig,
      Did the fmt work for you?

  21. lana August 11, 2013 at 1:43 pm #

    that would be great
    lankris@hotmail.com
    thank you

  22. M. Gonzalez March 17, 2014 at 5:40 pm #

    I just found this link from Mayo clinic: mayoclinic.org/quick-inexpensive

    It’s about FMT. The article is very interesting. Also gives names and toll free numbers from different doctors that perform this procedure. They are in states like Minnesota, Arizona,y Florida.

  23. Craig March 17, 2014 at 6:56 pm #

    Hello all. Its been several months since I’ve frequented this website. I’ll provide a short summary of what’s happened so that others might benefit.

    In short FMT had ABSOLUTELY NO POSITIVE EFFECTS on me. Despite 7 weeks of (expensive and taxing) therapy with two different donors, I became quite a lot worse and even ended up in hospital for five weeks. I might add that this therapy was conducted with/under the direct supervision of one of the world’s most experienced and well-known pioneering doctors. (I’d like to add that I continue to have the utmost respect for this particular individual. He is an excellent and skilled physician and I cannot fault his efforts or passion).

    Whilst many of us are extremely sick and contemplating surgery or serious medications, I ABSOLUTELY IMPLORE you all not to be over-excited by the potential false hope being reported with this treatment. It clearly works for a specific cause/type of UC (I believe this illness will be further sub-classified in the years to come), but not others. It’s an anomaly of the internet that gives searchers a skewed impression of success : a few sources loudly proclaiming outstanding success / almost no sources of the many treatment failures (which far outweigh the success from the others I’ve maintained contact and who have undergone the same treatment). In short – nobody reports treatment failures.

    As quoted it certainly is another option for those facing collectomy.

    At the end of the day – try all alternatives, but please don’t go putting all your eggs in one basket.

    I spent 6 weeks in hospital on IV hydrocortisone late last year in an effort to avoid collectomy and have managed to show a slow response to standard immunosuppressant therapy alongside traditional Chinese therapy (in conjunction with standard pathology monitoring). It took three months as an outpatient to regain enough health to function as a human. I don’t want anyone to suffer the same road I have.

    Like many I hope the day comes shortly that a more personalised diagnosis and treatment is available. I encourage all fellow warriors of UC to try everything and see what works for them.

    I;m doing my best to be healthy enough to work again and am trying to put the whole experience out of my mind so I won’t frequent this website too often.

    I wish everyone all the best in fighting the dreaded UC. My outstanding message is three fold;

    1. FMT isn’t a magic bullet for all UC sufferers. Period.

    2. There are a few, very vocal and well-published authors of FMT success, there are even fewer from the many who this therapy has failed or made worse. This can provide a false expectation! (beware treating yourself with Google!)

    3. Continue to fight the good fight everyone. One of these days someone will have an even better understanding of the many causes of this debilitating beast. Don’t give up.

    Cheers

    • Mary April 12, 2014 at 10:58 pm #

      Hi Craig,
      I had been reading your experiences regarding FMT’s last year and I am very sorry to read your recent post. I believe you have enormous strength and determination to beat colitis, as you have started to turn your recent colitis flare in a better direction. I wonder if you have ever been checked for allergies to foods and medications, just a thought!
      My son was diagnosed with proctitis 6 years ago (aged 16) and suffered with worsening of his colitis (pancolitis) and many other issues due to taking Pentasa and using
      Salofalk. He is now on 6mp . We eat pretty much organic in our home and he is allergic to milk. 6 mp hasn’t worked, (recently noticed it has lactose in it) but, vsl 3, l glutamine, astaxanthin and extra virgin olive oil (2 tablespoons daily) gave him remission within the first week of trying this combination and he enjoyed a normal life again for 6 months last year. (I know we put all our eggs in one basket, but, he was very, very ill). He started this combination on the day he started 6 mp. As you may know 6 mp takes 3-6 to become effective, so his relief certainly wasn’t due to this drug. He is a med student and is not taught about supplements and after 6 months decided to give up the supplements and rely solely on 6 mp. He has been up and down with flares ever since, getting relief with vsl, oregano oil, glutamine and then dropping them. He enjoys life to the fullest, has a beautiful, thoughtful girlfriend, many friends, loves to socialise and enjoys eating out and alcohol (which I think probably plays a part in bringing on a flare, ) As from Friday, he has started 40mg prednisone tapering over six weeks, due to feeling a lot of cramping and pain . Only this time, it worked within hours – I am wondering if the inflammation isn’t bad this time. In any case, I am upset that he is on prednisone but, glad he has some relief!
      We live in Sydney and have waited a year to get into Prof Borody, which is happening in May. I don’t know what the outcome will be, but, it is important to keep looking for an answer and try to give as much information as possible to Prof Borody to help him in treating my son.
      I sincerely wish you every success for the future and thank you for posting your experience.

  24. Michael Hurst
    Michael Hurst March 19, 2014 at 8:49 am #

    Hi Craig,

    I am sorry if your experience does not seem to have worked out for you. I do believe there are many possible sub types to this and the dynamic of this illness is definitely complex.

    When I ended up trying the Fecal Microbiota Transplant (FMT) all other medical possibilities other than surgery had been exhausted even after 2nd and 3rd opinions from doctors.

    In my case, antibiotics had a dramatic and noticeable impact on my case of Ulcerative Colitis which led me to strongly believe that bacteria played a very important role in the course of my illness. My treatment also involved more than just fecal transplants, I also drank whey protein shakes, was taking Prednisone and Mesalamine and then added Wellbutrin (Bupropion) to the mix.

    – In 1999 during my initial flare of Colitis, the flare was finally brought under control within a day or two after adding Cipro to my treatment regiment which included Asacol and 60 mg of Prednisone.
    – Many years later I repeated these results during a time I was without health insurance using Cipro.
    – In 2010 I had an almost immediate remission following IV antibiotics including Vancomycin. That is from bloody diarrhea to near solid stool from one bowel movement to the next.
    – In between times various pro-biotics including VSL #3 were helpful to some extent.
    – As I approached surgery and followed the surgeon’s advice to boost protein levels I was able to taper off Prednisone and maintain a relative state of remission. That is my body weight came back, bowel movements decreased and no blood in my stool.

    I choose to pursue fecal transplants and continued with them daily for 5 weeks. I initially got better, then slowly got worse after I stopped taking mesalamine. Finally I ended up adding back in Prednisone, Apriso (24 hour time-released mesalamine) mesalamine suppositories, Bupropion and a low dose of Doxepin for sleep.

    I believe it was the combination of drugs on top of the fecal transplants and adequate protein to rebuild my large intestine that made me healthy.

    Once I hit my great remission in the last week of July 2011 about 6 weeks after I had started the fecal transplants, and after the addition of the drugs I rapidly tapered off of Prednisone from 40 mg to 0 in less than two weeks. However I continued to take Apriso until December 2011. I also continued to take Bupropion through the winter as well and did this last winter as well for seasonal affective disorder.

    I don’t know to what extent any one treatment is a magic bullet, however I did take Bupropion in the past and that alone did not result in a lasting treatment for Colitis. My belief, is that what made me better and would be most helpful to others a combination of:
    – permanently and sustainably altering the bacteria through fecal transplants,
    – Taking in high amounts of protein through meal replacement shakes and / oramino acid supplements like L-Glutamine to heal intestinal mucosa,
    – Anti-inflammatory and immune suppressant drugs in the short term for at least 3 – 6 months following fecal transplants. Bupropion proved to be very, very helpful when added to the fecal transplants for me and results were almost immediate.

    I go into more detail in on my website and in my ebook at http://www.FecalTranplant.org, There are some small scale studies ongoing and hopefully greater understanding about this illness is coming.

    Michael

  25. Cheryl September 3, 2015 at 1:27 pm #

    I am 58 and I have had UC for 32 years. I developed it shortly after having my first child. On first colonoscopy I had involvement of entire colon. I have several flares a year brought under control with prednisone. I recently had an elective procedure and took the antibiotic clindamycin. Big mistake. I now have C dif colitis on top of my UC. I have been started on flagyl to treat the C dif infection. I am scared to death. Prognosis of recovering from the combination of both these diseases is not.good. I am a nurse and should have questioned taking the flagyl. Apparently it is the worst antibiotic for causing the C dif infection. Anybody out there have a similar experience. GI doc says I am not a candidate for FMT until I fail treatment with the flagyl.

  26. Michael Hurst
    Michael Hurst September 4, 2015 at 9:03 am #

    Ulcerative Colitis and c. diff occurring together is not that uncommon. However c. dif might be under diagnosed and not tested for in people who have already had UC since it may be hard to distinguish from just a flare.

    As you know antibiotics often fail for treating c. diff. If not the first time, then most likely by the second or third time. This is even more likely for people who have had Ulcerative Colitis for years, since the microbiome has already been decimated. While antibiotics can may work the first time, when c. diff comes back it often gets stronger each time afterward. Since we know that fecal transplants are safe, highly effective and permanent it seems unnecessary to wait for antibiotics to fail. Antibiotics use could also make flares of the idiopathic Ulcerative Colitis worse in the long run too because there will be no “good” bacteria left to modulate immune-system response.

    You do have a few options:

    1) Do what your current GI doctor says and hope that a course of Flagyl works this time and last for at least a few months or a year and that he will follow through with his promise to do the FMTs the next time the c. diff comes back.

    2) Find a doctor who has done FMTs in the past for Ulcerative Colitis before the FDA restricted the use of FMTs to just c. diff in June 2013. This process could take a matter of weeks or months and would likely involve traveling out of state. The doctor would prescribe tests for your donor and do the first one using a colonoscope. This would cure the c. diff. And then if you want to knock out the UC, you could do then at home for about 4 – 6 weeks at home by self-administered enema while being in communication with your doctor.

    3) Just go ahead and do the FMTs by enema at home starting as soon as tomorrow or the next day with an immediate family member as a donor like a husband or your children. This would immediately and permanently cure yourself of the c. diff without having to wait for antibiotics to fail.

    Of course doctors and other medical professional will always recommend testing of course just to be on the safe side. However by using a donor questionnaire and knowing your donor’s medical history and lifestyle and what illnesses would be tested for (transmittable STDs and bacterial infections of the intestines) then you might consider taking a calculated risk. You might decide it is less risky to do the FMTs now to stop the c. diff now rather than wait for your doctor to do them several months or a year from now.

    Donor screening questionnaires and lists of tests to run can be found in articles published in the Journal of Gastroenterology that are available to the public on the internet, and on various patient forums. I also include the one I got from my doctor in my ebook along with the step-by-step instructions on how to do them. If you want to end the Ulcerative Colitis too for good, you could then continue to do the FMTs for 4 – 6 weeks along with using drugs to control inflammation as necessary and end your case of Ulcerative Colitis for good as many people have already done.

    In addition to my website and others, including other stories on this forum, here is a link to a video interview including myself and also a Physician’s Assistant who successfully did these ourselves at home. http://www.fox5dc.com/news/1514049-story

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