I am a 34 year old man originally from Florida who has lived in the Washington, DC area since college. I was a Political Science major at American University and have been an elected official. Hobbies include swimming, weight lifting, running and trivia. I’m also an IT consultant, author, speaker and life coach. I was diagnosed with Ulcerative Colitis just before my 21st birthday. I tried a variety of different drugs ranging from Prednisone, 6mp, Asacol, Remicade, anti-biotics including Cipro, pro-biotics, diets and finally Fecal Transplant. I am happy to write that I now consider myself cured after 18 months with normal bowel movement and no UC drugs.
Some more about me:
I’m pretty much shameless. Otherwise I think I’m pretty normal, I like to figure things out intellectually. I also like swimming, weight lifting, running, going out, hanging out and recreational sports like kickball.
I have been symptom-free for just over 18 months now and consider myself cured. Almost two years ago now, I came 3 days away from scheduled surgery, a full Colostomy with temporary diverting Ileostomy and Ileoanal reservoir when I discovered one more treatment option to try. I cancelled surgery, much to the chagrin of my colorectal surgeon and others because I really thought this could work.
While I had previously heard about Fecal Transplant – also known as Fecal Bacteriotherapy, Fecal Microbiota Transplantation and many other terms – for Colitis caused by Clostridium Difficile, I had not heard of it being successfully used for Ulcerative Colitis. Not until I found a study by Dr. Thomas Barody that had been published in the Journal of Gastroenterology where he documented its successful use in 6 patients. I then set out to do it myself and this lead to what has proven to be a lasting cure.
Fecal Transplants Cured My Case of Ulcerative Colitis and Saved Me from Surgery
When I was almost 21 years old I was traveling with my family in South Africa when I developed Ulcerative Colitis. It started with unexplained inflammation in my eyes and then turned to watery stool with bright red blood in it. When I got back to the U.S. Ulcerative Colitis was confirmed by 2 different doctors and stool tests did not reveal any known parasites. I still transferred into American University in Washington, DC and tried to carry on as best as I could even though 60 mg of Prednisone and 12 x 400 mg of Asacol was not effective in stopping the flare.
Finally the addition of Cipro ended up stopping the flare and I was able to taper off Prednisone and maintain remission for a while after that. However flares continued intermittently, during those times I would go back on Prednisone until the flare died down so that I wasn’t losing blood and tapered off of it. A year later I started on Accutane for acne, which I had had for years, but had been made worse by Prednisone.
In retrospect I think some other factors also contributed to the onset of Colitis, including more frequent diarrhea. In retrospect these symptoms could have been described as Irritable Bowel Syndrome (IBS). The factors included moving to a more northern climate for college (from Florida to Wisconsin and then to Washington, DC.) I think Seasonal Affective Disorder (SAD) played a part as well as St. Johns Wort which I used to self-treat the condition. I also think switching to a high fiber diet in high school, The Zone Diet, which included lots of raw vegetables, nuts and dairy also contributed. I also wonder if anti-biotic use and frequent abdominal pains when I was an infant also contributed.
Fast forward back to college and after college. I tried my best to maintain remission over the following years, which included going on Prednisone to control flares and I even tried Cipro once or twice again too with some success. I branched out and continued trying more approaches. This ended up including a low residue diet which I read about in the book Eating for IBS, this did help a little for slowing down diarrhea but was not a complete solution. I tried the Specific Carbohyrate Diet (SCD), and then later a gluten-free and dairy-free diet. However high amount of nuts and raw fruits and vegetables seemed to cause worse diarrhea and urgency so I moved away from that. I also tried pro-biotics such as VSL #3, which seemed to help in very high doses, however it was very expensive at almost 4 Trillion CFUs per day (Colony Forming Units, a measure of good bacteria count for a pro-biotic.)
I then tried Remicade, however I ended up getting two infections that required hospital treatment including a boil in my groin region and a skin infection on my leg that required a 4 day inpatient stay. While being treated with anti-biotics in the hospital with Vancomycin I had an almost spontaneous remission of Colitis, however recovery was slow until I started taking massive amounts of iron too. I sought out another Gastroenterologist specifically to try anti-biotics again. I wanted to use anti-biotics and then pile on pro-biotics as a one-two punch. However the health insurance I had at the time was not very good and would not cover VSL #3. My appeal was denied even though I pointed out that it was much cheaper than Remicade which not only cost $10,000 a dose billed to insurance, but had also contributed to a 4 day hospital stay.
Finally as I was losing weight and feeling discouraged I decided to follow my doctor’s advice for surgery. It didn’t seem unreasonable given my situation – that nothing except Prednisone could sustain any remission, and even that was starting to not work as well as it did before. I planned to have surgery at Mayo Clinic near Jacksonville, Florida since it was only about an hour drive away from my parents. I was told I would not be able to take care of myself for a significant period of time afterward. However I also spoke with some people about my age who had surgery and were doing fine.
Between the doctors and the patients I was feeling more encouraged, however I still had nagging doubts. I disagreed with the premise that this illness could not be cured and would only get worse instead of better. I also wondered why if this illness responded to anti-biotics and pro-biotics, how it could not be an infection. Then I saw an article about Fecal Transplant being used for Colitis caused by Clostridium Difficile bacteria. This was encouraging, however there was no mention of it being used to treat Ulcerative Colitis. At the same time, the colorectal surgeon told me my blood albumin levels were low and that I should take meal replacement shakes such as Ensure. No doctor had ever told me that my blood protein levels were low before. I started taking Muscle Milk shakes every day and weaned off Prednisone a month before the surgery date. Once again I doubted the surgery. Why should I make myself sick by having surgery, when I am currently not losing blood and my ene rgy has come back again?
Then 3 days before the surgery date, my Mom handed me a print out of the Wikipedia article on Ulcerative Colitis and there was a link to an article by Dr. Barody about successfully using Fecal Transplant for Ulcerative Colitis. This floored me, Wikipedia hadn’t been created when I was diagnosed and I thought my doctors and I knew it all. I had stopped looking for alternatives and bought into the whole notion of the disease not being curable. I stayed up all night reading and researching as much as I could. This seemed to me like much more than hope.
I told the colorectal surgeon and he tried to scare me “it will only get worse,” “prednisone will cause your bones to crumble and possibly diabetes,” “you could get colon cancer, “the tissue in my rectum was ‘burned out’ so that it can’t possibly recover” and more. But he couldn’t refute the facts of the study. I said why not, bacteria can cause stomach ulcers, traveler’s diarrhea, even c. diff Colitis, and my case has responded to anti-biotics and pro-biotics on numerous occasions.
So I walked away from that doctors appointment and immediately started looking for doctors that would be willing to do this procedure. I was able to make appointments with leading doctors in the U.S. including Lawrence Brandt and Colleen Kelly. These doctors were willing to give it a shot for my case of Ulcerative Colitis, however I would have to wait since they were booked for months. Finally I decided to do it myself after reading a study by Dr. Michael Silverman that low volume fecal enemas that were administered at home were just as effective as ones done in a hospital. I also talked to someone who successfully used Fecal enemas / transplants to “cure” her son. Once again this was a huge mind shift for me, “cured, really?!” After so many years of struggle that I was told was futile, such that I tried to avoid facing reality, there was something I could do.
So I decided to do it myself. I recruited a friend of mine and asked him to be my roommate. Tests for blood work and stool would have cost me over $1000 and I learned a lab would not accept a test unless prescribed by a doctor. However I was not going to let anything stop me now. I saw this as an epic battle an all-out if not almost reckless charge where nothing was going to stand in my way. I got a new job, new apartment and I started the fecal transplants at home. I then continued every day for 5 weeks, determined to keep going until all symptoms were gone. However along the way I had a couple realizations and found some ways to tweak the process. If I had it to do over again, I think it would have been much easier if I had done some things, especially more things to get an active flare under control and keep inflammation down and limit bowel movements. After 5 weeks, flares had come back and I had to go back to my regular GI doctor for more Prednisone, he was very upset with my renegade self-treatment and insisted I stop them. Although he was a little less upset after talking to Dr. Kelly.
However about 7 weeks after I had started the transplants on a daily basis. I starting taking Bupropion for depression and Silenor to help sleep maintenance. However I also told the doctor, a psychiatrist, that I found that a study had been conducted about Bupropion for Crohn’s Disease however no results had been published. The doctor also said that while Silenor would help for sleep it would also might help my gut. I got home and researched, sure enough Silenor would help. I also learned that it was the same active ingredient that had been in the off-patent anti-depressant drug Doxepin. Apparently a drug company re-patented the drug for sleep maintenance using a slightly lower dosage 3 or 6 mg than the lowest amount used to treat depression (10 mg capsules, with much larger doses often used.) I also went back on Apriso even though it wasn’t covered by my prescription drug plan. For some reason Apriso did seem to help much more than Asacol. I think this might have been because it used 24 hour time release beads instead of 8 hour time release hard tablets that pass through the digestive track.
By the end of the next night, I went from blood and watery stool to a normal bowel movement! Unbelievable! I was so excited that I even took a picture of it in the toilet. In an almost anti-climactic moment I remember saying to myself matter of factly, “it’s gone.”
Six weeks later I had a colonoscopy. It turns out that where I had previously had pan Colitis – inflammation throughout the entire digestive track – I now had patches of health tissue. My GI doc was concerned this might mean the illness had changed course and was now some form of Crohn’s Disease. This didn’t seem possible though, I had already had a capsule endoscopy test (where you swallow the pill with the camera) to determine that the illness was confined to the colon and that I would be a good candidate for surgery. When I looked at the images myself I came to a different conclusion – the illness was resolving itself. By the start of December I stopped taking Apriso with only a mild return of occasional diarrhea for a week or two, but no blood, then I stopped Doxepin / Silenor. Then I switched Bupropion immediate release to extended release then off it, then on again as winter approached this year.
I also found that taking Valerian root extract has helped me have much more firm stool as well as being helpful for me to get to sleep. I think the calming effect of the herbal supplement is what is helping me in this case. So now over 18 months since my last Fecal Transplant I am healthy with better bowel habits than I had before I ever became sick with Colitis. I am so grateful that I found out about this, and I am so happy that I was willing to take responsibility and make the best decisions for myself rather than trying to make others happy. It is my firm belief that many people with Ulcerative Colitis and possibly Crohn’s Disease are un-necessarily having life-altering surgery and dealing with potentially life-threatening drug side effects when a cheap, effective and safe cure is available.
Since that time I have made it my mission to tell as many people as possible.
Fecal transplant combined with Prednisone, Apriso and the anti-depressants Bupropion and a very low dose of Doxepin (Silenor) helped bring about a lasting cure, a sustained remission without the use of drugs when the only other treatment option doctors gave me was surgery.
Otherwise throughout the course of my case of Ulcerative Colitis I responded to anti-biotics including Cipro and Vancomycin. This was in spite of the fact that stool tests did not reveal the presence of Clostridium Difficile bacteria or any other known pathogens. However these drugs did not offer a permanent cure and Cipro was not as effective the second time I tried it, I never tried Vancomycin a second time.
Otherwise Prednisone was effective for dealing with flares. Taking pre-digested protein shakes (I used Muscle Milk) helped restore the effectiveness of Prednisone after it had previously lost effectiveness.
Apriso (24 hour time-release beads) was the most effective form of mesalamine for me along with suppositories and enemas.
Remicade at the highest dosage level was sometimes effective for a few days to a week, however wore off long before the next scheduled dose 4 weeks later. In 8 months of treatment it also was a contributing factor to 2 different secondary infections that resulted in hospitalization.
written by Michael Hurst
( Michael’s blog: http://fecaltransplant.org/ )
submitted in the colitis venting area