You do not necessarily have to take drugs for Ulcerative Colitis for the rest of your life. I took drugs for Ulcerative Colitis from 1999 - 2011 which included up to 60 mg of Prednisone for sometimes several months at a time. I also tried Asacol, 6mp, Remicade Apriso, mesalamine suppositories, VSL #3 at nearly 4 trillion CFUs per day, I also tried the Specific Carbohydrate Diet (SCD), gluten-free, dairy-free and low-residue diets. However both Cirpo and Vancomycin brought me illness into relative remission on several different occassions even though at least 5 different stool tests over the years failed to reveal the presence of any known pathogens including c diff.
By March 2011 I was 3 days before my scheduled surgery, a complete colostomy when I discovered that fecal transplants had been used for Ulcerative Colitis even in cases where the patient had never been diagnosed as having clostridium difficile (c diff) bacteria. I found an article linked from the Wikipedia entry for Ulcerative Colitis to an article published in the Journal of Gastroenterology called "Treatment of Ulcerative Colitis using Fecal Bacteriotherapy" by Dr. Thomas Borody which documented 6 of his patients who had achieved long term remission without the continued use of drugs. This blew my mind, but it made sense to me since antibiotics and probiotics seemed to help at least for short periods of time in the past. It also made sense to me considering that stomach ulcers are now known to be caused by h. pylori bacteria, even though it took about
15 - 20 years after this discovery was documented to become widely accepted when considering treatment approaches. I had also started to get much better as surgery date approached, tapering off Prednisone a month before the surgery date after starting to take whey protein shakes upon the advice of the surgeon to build up my bodies available protein to recover faster from the anticipated surgery.
I cancelled surgery knowing I could always come back to it later, to try fecal transplant first even as the colo-rectal surgeon at Mayo Clinic in Jacksonville, FL told me that my colon and rectum were "blown" and could never recover due to all of the scar tissue and that I could never regain elasticity and not have urgency after eating. However I refused to believe this to be true considering the doctor had never even heard of fecal transplants and believed recovery to be impossible. In fact his attitude drove me to want to prove him wrong, since he dismissed the research I brought him without a valid counter argument.
I talked to various doctors and at times had appointments scheduled with Dr. Kelly in Rhode Island and Dr. Brandt in New York. However I learned that for Ulcerative Colitis it might take many more than just one fecal transplant and even with doctors I would still have to find my own donor and administer my own follow up enemas. So I ended up doing it myself daily for over 5 weeks. After initially getting a little over optimistic to where I stopped taking other drugs including Apriso, I went back on Prednisone, then finally hit it with Apriso, mesalamine suppositories, Bupropion (Wellbutrin,) and a low dose of Doxepin all at the same time, July 23, 2011, a date that I now consider the start of the great remission and cure. Just over 24 hours later I had a solid stool and things kept getting better. 8 weeks later a colonoscopy revealed significant mucosal healing. My GI doctor was at a loss for an explanation, he thought maybe the illness was turning into Crohn's Disease, a possibility he had ruled out just a few months before to clear me for surgery.
I stopped taking mesalamine in December 2011 and have not taken any drugs specifically prescribed for Ulcerative Colitis since that time and Bupropion as needed during the winter months for SAD. I have had no blood in stool since September 2011 the day after my last colonoscopy when biopsies were taken. While it is hard to say exactly what happened I attribute my success to a combination of whey protein shakes to facilitate mucosal healing, fecal transplants over an extended period of time to alter the microbiome and establish a new more resilient bacterial colon, drugs to calm muscle spasms (like Doxepin) which I believe contributed to diarrhea and may have also disrupted mucosal healing, and Bupropion for acting as a TNF-a inhibitor as lab tests have revealed it does in mice as well as calming IBS related diarrhea.
My bottom line message, Ulcerative Colitis is not an incurable illness anymore than stomach ulcers were or leg infections that used to be treated with amputation before antibiotics were discovered. However at this point if you want to get better really badly you are going to have to take full responsibility for your care, do your own research and be willing to stay the course in spite of the fears and doubts of yourself and others.
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