Such a negative statement, but you are right that this is the current standard answer by doctors in the U.S. However there also is no definition of remission without signs of the illness and without the use of drugs.
In addition to my personal experience and those of many others 6 cases of sustained absence of Colitis for 1 - 13 years without drugs were documented in an article published in the Journal of Gastroenterology "Treatment of Ulcerative Colitis Using Fecal Bacteriotherapy" (Barody et al. 2003) http://www.cdd.com.au/pdf/publications/paper17.pdf
As Dr. Borody notes in the article (page 46-47) "there is currently no definition for remission that demands colonoscopic and histologic normality with no re-occurrence after a prolonged period without without medication. Perhaps in the future, if such therapy can acheive prolonged absence of UC without maintenance drugs, the result should be considered a 'cure'."
Removing the colon to cure the illness is like removing a leg to cure a leg infection. You can't have an illness on a limb or body organ that has been amputated.
There have been many illnesses in the history of medicine that have been defined as incurable that are now considered to be curable. Treatment options have also improved dramatically over the years and many illnesses including cancer and bacterial infections that were treated by amputation or removal of the bodily organ in the past are now treated using methods that leave the human body intact.View Thread
I just stumbled upon this forum today. I don't know if anyone on here has heard about using Fecal Transplant for Ulcerative Colitis but it worked for me. I did my last fecal transplant in July 2011 and have been off all maintenance medications and restrictive diets since December 2011 and actually have better bowel movements and health now than I did before I was diagnosed with Ulcerative Colitis in 1999 following my first flare.
In March 2011 after trying almost every possible therapy I came within days of my scheduled surgery date when I found out about this treatment from an article published by Dr. Thomas Borody in the journal of Gastroenterology "Treatment of Ulcerative Colitis with Fecal Bacteriotherapy." Six patients with treatment resistant cases similar to mine were now free of any signs of the illness and had been off maintenance medications completely anywhere from one year to 13 years.
After contacting a few doctors and talking to one or two I realized that it was not a viable option for me. To make a long story short I ended up doing self-administered fecal transplants using doctor's protocols and other patient experiences to guide me. I started them daily in June 2011, had a slight flare where I went back on Prednisone, then went back on Apriso, added the drugs Bupropion and Silenor (a low dose of the tri-cyclic anti-depressant Doxepin.) Within a day of starting the new combination my symptoms went away leaving me with solid stool for the first time in years. I successfully tapered from 30 mg to 0 of Prednisone within the next 10 days and then by December stopped taking Apriso as the last Colitis drug.
Bottom-line this treatment is affective, safe, and comparatively inexpensive especially if you do it yourself. However it will take someone who is really motivated to be done with this illness once and for all and willing to get over any squeamishness they have about poop. Compared to fecal transplants used to treat Clostridium Difficile infection which can be done in just a few days it could likely take more fecal transplants anywhere from 1 to 3 months, protein shakes to boost nutrition, and continuing to take other drugs to calm the bowels and inflammation for a few weeks or months after you have completed them before you can definitively be done with this illness. However once it is gone, it's gone and you can go back to living your live.View Thread
Ah, "incurable" I can't blame you for parroting the definition constantly repeated by the entire medical establishment of the U.S. However surgery is a cure for Colitis in the same way that amputating a broken or infected leg cures an infected leg. By the way this was a standard medical treatment option in the not so distant past.
If not cured what else do you call 15 months with no symptoms and no maintenance treatments after 12 years of severe pan-colitis? The only way that can not be called a cure is if the same illness ever comes back again in the same form or if you simply define the illness as incurable, such that you are always have it even if you don't have any symptoms ever again. Rather than base my argument on my own experience alone I would like to refer you to an article by Dr. Thomas Borody.
The following is from the article "Treatment of Ulcerative Colitis Using Fecal Bacteriotherapy" J Clin Gastroenterology 2003;37(1):42-47 a copy of the article can be publicly viewed free of charge at http://www.cdd.com.au/pdf/publications/paper17.pdf
This is from the discussion toward the end of the article.
"All patients had documented idiopathic UC with an absence of detectable infective agents. Complete reversal of UC was acheived in all 6 patients following the infusion of human fecal flora. All patients ceased anti-inflammatory therapy within 6 weeks and did not require further treatment during the extended follow-up period. After 1 to 13 years patients remained asymptomatic with a health colonoscopic appearance and normal histology... Though there is little doubt that UC can go into clinical remission, chronic UC has not been known to spontaneously resolve both colonoscopically and histologically without relapse for up to 13 years as observed here. To our knowledge, these 6 cases document for the first time the total disappearance of chronic UC without the need for maintenance treatment. This is an unprecedented finding that demands explanation ..."
"... There is currently no definition of remission that demands colonoscopic and histologic normality with no recurrence after a prolonged period without maintenance drugs, the result should be considered a cure".View Thread
I disagree about this just being a plug. Yes, the process is simple enough as you describe it, although I know many people would like some added encouragement and details to guide them. Before she had a book I was introduced to her by a prominent doctor who pioneered fecal transplants in the U.S. Sky was a mentor to me at no financial benefit to her at the time and I am truly grateful for her advice and encouragement.
As for saying that Crohn's Disease being incurable, that's what doctors still say about Ulcerative Colitis. If the root cause is the same as for Ulcerative Colitis bacterial imbalance in the intestines then I see no reason this treatment cannot work for Crohn's Disease as well.
To Miserable_SOB, I am so sorry. I was literally days away from having surgery and I'm grateful I heard about fecal transplants when I did. But man, I really had to fight for it when I did it in 2011.View Thread