As an update I am still doing well, sometimes diet or emotional stress will cause some loose stool but that is easily changed within a day, however no blood in stool since July 2011. Even if it somehow came back I would simply take what I know now and swiftly and ruthlessly beat the illness back to the stone age!
By the way, I usually didn't use a strainer and did this by blending on high on the "liquify" setting.
I think there are a couple of things that need to be noted about
the possible differences between successful and unsuccessful results on here and from readers who have written to me through my website. As far as I know, no one who has done exactly what I did has failed. This started to get kind of long once I got going, and I realize that the more I think about
it, the more I realize how important it is to have the right type of mindset to make this work.
- Have a warrior's mindset. When I went to the infusion clinic for treatment with Remicade I met many people being treated for cancer. The survivors and the ones determined to survive could be friendly with a good sense of humor, and yet they were also stubbornly determined to fight and had a sense of purpose for WHY they wanted to get better.
- Give yourself a deadline and have a sense of urgency about
curing yourself. This is not one of those things to get around to someday like clean the garage or paint the house, it is something where you make it a priority and find a way to make it happen.
- Have a sense of perspective and humor and be willing to be crazy for not doing what everyone else tells you to do, own it! My donor and I and my friends cracked poop jokes all the time. I mean what kind of crazy treatment is this? Well maybe I'm crazy. But I think it would be crazier to have a bag of poop on the outside of my body and in a best case scenario poop 5-6 times day for the rest of my life or continue to deal with having UC.
- Be willing and expect to do the fecal transplants for long periods of time if necessary, at least a few weeks at a time and then consider gradually tapering down how often you do them over time. The ones who have succeeded often continued for several weeks, and / or came back to it and tried again if they had to stop or symptoms came back. Having an initial improvement, then a flare, then another improvement followed by some ups and downs is not uncommon, however medications can help this. You can't give up when the going gets tough!
- Manage / limit inflammatory responses from the immune system and try to get into remission as much as possible before starting the enemas. Use drugs like Prednisone (or Ucera) to control inflammatory response. Use drugs like mesalamine to help heal the mucosa. I also count the anti-depressant drug Bupropion (Wellbutrin) as being an anti-inflammatory for its TNF-a inhibiting properties. The addition of Bupropion made a huge difference almost immediately for ending the illness. While fecal transplants themselves are a very important part of getting better don't expect them to be a stand alone treatment and don't stop the drugs too soon after some initial success. All of the success stories I have personally talked to have also used drugs in addition to the fecal transplants.
If I had it to do over again, I would have started with Prednisone before the fecal transplants and continued it the whole time. I also would have stayed on mesalamine the whole time in addition to the nearly 5 months I continued on it after stopping the fecal transplants.
- Adequate nutrition to heal is key and whey protein shakes are very effective and well tolerated. They helped me get off Prednisone when I was preparing for surgery and helped give me hope that I could get better. I believe that in retrospect, attempts at restrictive diets for me might have ended up depriving me of the types of and volume of nutrition that was necessary for me to properly heal.
- Limit diarrhea by managing emotional distress or depression with drugs. Maybe you can "suck it up" but your gut has even more neurotransmitters in it so make it happy. The brain-gut connection is well known and these drugs are often prescribed to manage Irritable Bowel Syndrome (IBS) However none of my GI doctors over the years ever thought to do this. The drugs were very effective at limiting diarrhea and urgency and I think helped the new bacteria to get established and for the mucosa to heal. If you want to avoid prescript
ion drugs, Valerian root extract seems to be pretty helpful.
- STOP asking for or needing to have permission to be healthy from doctors. GI doctors especially are in general risk-averse - in spite of their often huge monetary cost and significant side effects prescript
ion drug treatments often do not work for UC, or can work for awhile or some of the time and then stop working for reasons that are not fully understood.
Doctors need to at least be able to cover themselves and have legal and ethical obligations that they must operate within or risk their careers. Fecal transplants are outside these FDA guidelines, and a doctor directly telling a patient that fecal transplants can work when they are prohibited to do them by the FDA could risk their ability to practice medicine or at a minimum lose you as a patient.
Another consideration is that healthy people don't really need doctors most of the time, while sick people or those worried that they are sick do need doctors. While I believe that most doctors got into the field because they want to help people get healthy, and believe that is what they are doing, at some level they probably also have a need to be needed and its their livelihood where they have invested substantial work, time and money. They also have in many cases also gained significant amounts of prestige, money and psychological validation from their work which they believe is significant. If you believe you are doing the right thing and it offers significant benefits for you then why would you tell someone to do something that you aren't allowed to do that if successful would make them not need you?
- And finally be willing to take a really hard look at yourself and ask is there some part of you that is holding back and doesn't want to be well? My donor / roommate was studying hypnotherapy at the time, onc day when he can back from class he was saying that for hypnosis to be successful you have to have leverage and eliminate "secondary gain." Basically that meant that the consciously known and subconscious reasons for being better must outweigh the benefits of being sick. Also you need to find other ways to have your emotional, social and material needs met, especially if being sick is somehow meeting those needs for you. This seemed absurd to me at first, maybe that applied to losing weight, quitting smoking or pain management but to my case of Ulcerative Colitis? I thought I was moving heaven and earth to try and get better, why would I possibly want to be sick and what was I doing or not doing that was keeping me ill?
However I decided to consider and "try on" the idea that I was allowing myself to be a victim, and that the illness had become part of my identity even in the act of resisting and denying it. Maybe I didn't want to have to bear being completely responsible for my well-being, I wanted someone to take care of me and I was using it as an excuse to not be able to take necessary action with my finances and with holding down a steady job to pay the bills.
I believe that coming to terms with the fact that part of me was holding back, identifying the possible reasons why, and then challenging myself to confront this and stand on my own was what really made me better. I also decided that I was going to be cured and just be a healthy person with no illness and no excuses. After this realization I got the prescript
ions for Bupropion and Doxepin two days later, refilled the Apriso and mesalamine suppository prescript
ions and the day after that the illness was just gone! Interestingly enough suddenly not having the illness created mixed feelings, what next? What excuses did I have for not doing what I have said I wanted to do? What will I do with all of the time and energy that I now have? How will I tackle the challenges in my life that I had been putting off dealing with?
Now, just making the decision and deciding is not enough in itself, that is in itself is just wishful thinking, but it will guide you to continue to do what it takes to become healthy! I believe choosing to "try on" the identity as a healthy person restoring yourself back to the way things ought to be rather than being a victim of circumstance stuck fighting a battle with no end was what really made me healthy. I now consider myself to be a healthy person who HAD Ulcerative Colitis.
35 year old man diagnosed with Ulcerative Colitis in summer 1999. Avoided surgery by using fecal transplants along with prescript
ion drugs and nutritional supplements June - July 2011. Symptom-free without medications, supplements or restrictive diets since December 2011! A video interview about
my story is here: bit.ly/1hdqfbK