February 16, 2015
Thinking outside the box about Crohn’s
Posted by WARREN PERLEY – Editor, BestStory.ca
Writing from Montreal
On February 12, 2015, Washington Post science reporter Joel Achenbach wrote an interesting piece on the Opinion Page of that newspaper saying “we live in an age when all manner of scientific knowledge…faces organized and often furious opposition” from doubters who “have declared war on the consensus of experts.”
Mr. Achenbach was referring to a minority of the population which refuses to accept scientific truths about all manner of public health issues, ranging from vaccinations to climate change.
The day after Mr. Achenbach’s piece was published, BestStory.ca posted an 8,500-word analysis by Dr. Michael T. Collins of the University of Wisconsin about another medical hot potato involving the connection between Crohn’s disease and a bacterium known as Mycobacterium avium paratuberculosis (MAP), which is found in the gut of cattle and other ruminants suffering from a disease called Johne’s, as well as in the intestines of many Crohn’s patients.
MAP has also been found in those suffering from ulcerative colitis, which together with Crohn’s, is collectively known as inflammatory bowel disease (IBD), affecting more than 5 million people globally and growing rapidly in the Western world. There are 2.2 million IBD patients in Europe, 1.4 million in the U.S. and 233,000 in Canada, which has the highest per capita rate in the world. Australia has more than 75,000 IBD cases in a population of 23 million.
In addition, countries which traditionally had a low incidence of the disease, such as China, India and Latin America, are reporting a growing number of cases as their economies become more industrialized.
IBD, especially Crohn’s disease, is characterized by chronic diarrhea, abdominal pain and weight loss. Whereas colitis affects only the large intestine, Crohn’s can strike the digestive tract anywhere from the mouth to the anus.
What makes Dr. Collins’ analysis so important to Crohn’s patients and their care-givers is that it lays out, step-by-step, the scientific case that Crohn’s is an infectious disease, rather than strictly an autoimmune condition which is currently treated by most gastroenterologists with immunosuppressant drugs and expensive biologic medical products, such as Remicade™, Humira™ and Stelara™.
That, in turn, means this disease could be treated, and possibly cured, by a mix of three or four antibiotics traditionally used to treat tuberculosis and leprosy, which emanate from the same Mycobacterium genus as does the MAP bacterium found in patients suffering from Crohn’s and ulcerative colitis.
Although most gastroenterologists dismiss out of hand that Crohn’s and colitis are infectious diseases, there are, in fact, a handful of gastroenterologists around the world already successfully treating Crohn’s patients with antibiotics. In the coming months, I plan to do a story on those doctors, as well as some of their patients who have been treated and will share their stories with our readers.
But those are anecdotes: what IBD patients need now are hard, scientific facts which they can share in a frank discussion of treatment options with their gastroenterologists, most of whom will also undoubtedly find Dr. Collins’ analysis about the infectious disease aspect of Crohn’s to be informative if they take the time to read it.
As Mr. Achenbach pointed out in his Washington Post article, there is a tendency for all of us, even those who believe fervently in science (and medical doctors should be near the forefront of that cadre) to seek evidence that confirms what we already believe. But by clinging to shibboleths that defy science and logic, we may be shutting the door to new and better options.
And as Albert Einstein, an acknowledged scientific genius of the 20th century, wrote in a July 8, 1901 letter to family friend Jost Winteler: “A foolish faith in authority is the worst enemy of the truth.”
The very same day we posted our Crohn’s story, I received an email from a new reader in the Maritimes who had just bought the article (all stories behind our paywall sell for 40 cents each) to glean information about how antibiotics might be used to help her 15-year-old son who has Crohn’s. Here is what that reader, who asked me to keep her identity private, had to say:
I am so amazed at the detail of the research and connections presented in Dr. Collins’ analysis: everything has been presented clearly, concisely and in an easy-to-read format. I will definitely forward a link to my son’s GI specialist and to our family doctor for their review….This couldn’t have arrived at a better time. I know I am going to find it invaluable in my attempts to persuade our GI team to think outside the box.
Now I’d like to introduce you to Cheri Lehmann, 55 years old and a life-long Crohn’s sufferer, who is another prime example of the kind of patient who could use the information in Dr. Collins’ scientific analysis to help her seek “the truth” about an antibiotic treatment option.
“This is the first time I’ve ever heard about the possibility of antibiotics [known as the anti-MAP Protocol] being used to treat Crohn’s,” she told me during a February 8, 2015 telephone interview. “My God! I’ve got to find a doctor who could at least give me a chance to be treated with such antibiotics.”
Cheri is a customer service representative in the manufacturing sector who lives in Sussex, Wisconsin, a town of 25,000 located 40 miles east of Madison (where Dr. Collins lives). She is facing a critical juncture in her treatment: in January 2015, she changed jobs and is now waiting to see whether her new insurance plan will cover most of the costs of her weekly injections of Humira™, which add up to about $6,000 a month.
Having lost more than half her small intestine during three surgical resections over the years, Cheri lives in constant pain and discomfort, but considers herself lucky that the Humira™ has been making her condition “bearable”, which still means running to the bathroom with diarrhea between four and eight times daily. She cringes at the thought of what might become of her if she loses her Humira™ injections because without insurance coverage such treatment would be unaffordable. This makes her search all the more urgent for an alternative, such as the anti-MAP Protocol.
Cheri, whose first marriage broke up due to the strain created by her illness, is happily remarried and the mother of two grown children. She has a positive attitude and tries to live every day to the fullest, taking pleasure from all life still has to offer, including country-road spins on her beloved Harley-Davidson motorcycle. Cheri has written a brief but detailed history about her battle with Crohn’s disease in order to help educate the public about the daily pain and stress that IBD, especially Crohn’s disease, inflicts on those it strikes. Below is her story.
Crohn’s means always saying ‘sorry’
By CHERI LEHMANN
Writing from Sussex, Wisconsin
My symptoms began when I was 15 and had just started my first job. I began having stomach pain, bloating, gas and diarrhea. Because I was working at a fast food restaurant, I thought my stomach troubles were from eating so much of their food. I tried to avoid the fried foods, but I was 15 and I loved french-fries!
The diarrhea wasn’t too bad at first. When it did not go away, I thought maybe I had some kind of stomach flu. And it only continued to get worse. Anything I ate turned into explosive diarrhea. I would start to get really bad stomach pains. If I didn’t get to the bathroom right away, I would break out in a cold sweat and start to shake. When I finally made it to the bathroom, I would have explosive diarrhea with severe cramps. I could feel my intestines squeezing and squeezing to the point where I could hardly breathe. My stomach muscles would hurt from the cramps and I would lose so much liquid, I would feel light–headed like I was going to faint.
Due to my family’s income being below the poverty level and not having health insurance, I did not go to the doctor for a couple of years. Finally I was feeling so bad for so long, my mom broke down and took me to the doctor. He pushed on my stomach, asked some questions, and said it was probably an unbalanced diet. He told me to eat more salads and healthier foods.
This was the first in a long list of “diagnoses” I received for my abdominal pain. My problem has been labeled spastic colon, unbalanced diet, stress, lack of dietary fiber. I was even told that I was making myself sick because I worried too much about when the next attack would come.
Doctors told me to try to stay calm and the symptoms would go away. These doctors almost had me convinced I was bringing it on myself but I just knew there was something physically wrong. When the GI doctor finally labeled my problem Crohn’s disease, it validated all my complaints. Prior to that, I had started to believe I was going crazy because doctors kept finding everything was “normal”. It took eight years to get the correct diagnosis.
Since then, I’ve tried every drug possible: Azulfidine™, Flagyl™, Asacol™, Prednisone™, Imuran™, Pentasa™, Remicade™ and am now on Cimzia™ and Humira™. I get B12 shots bimonthly and need to take vitamin supplements.
I have been hospitalized for low potassium, low magnesium and severe dehydration due to losing so much fluid because of diarrhea. With my compromised low immune system, I am doomed where germs are concerned. I catch any germ that is going around and have the illness longer than anyone else.
When I was a junior in high school, I had a boyfriend and a job. When out on a date, I would sometimes have to tell him to find a bathroom, right now! Then I would race into the business establishment we stopped at, madly looking for the bathroom and hoping no one was in there. I had to use some disgusting public bathrooms because I could not wait to go somewhere else.
When I got married at 19, I could hardly eat at my wedding reception because I was so worried I would have an attack and get the explosive diarrhea. Trying to go to the bathroom while in my wedding dress would have been just another disaster in my life. My husband and I would go to friends’ houses for dinner, and it would always happen: I would get cramps and have to use their bathroom. It was humiliating to have the explosive diarrhea at someone else’s house, knowing friends were going to have to use the bathroom after me. I would hang my head and not look anyone in the eye. I started buying incense matches to use at their houses while I sat on their toilet, sometimes for as long as 45 minutes at a time.
Another common problem in the bathroom was having to repeatedly stand up, sit down, stand up, and sit down. I would have diarrhea, think I was finished, flush, stand up and immediately feel I had to go again. I could do this four or five times each time I used the bathroom. Sometimes I would get asked why I flushed the toilet so many times. How embarrassing!
I had two children: a son when I was 21 and a daughter when I was 22. My symptoms seemed to go into remission when I was pregnant, but came back stronger than ever after each birth. At that time, I still did not know what was wrong with me. I saw three or four general practice doctors and then finally an internal medicine specialist. He did some X–rays, but really couldn’t see much. He referred me to a proctologist who found the Crohn’s disease.
Through the years the symptoms would get better, then worse. I would see doctor after doctor, trying to find the right medicine and doses. One doctor even had a specialist from Germany come in to see his most difficult cases. I was his No. 1 challenge. As the years went by, the doctors seemed to care less and less about me and my symptoms. Their fallback treatment was always Prednisone. They didn’t seem to want to try anything different. When it came to that point, I would look for a different doctor so I could get a new point of view.
As my daughter got older, she would come with me into the bathroom at public restrooms. She would wash her hands and use the air dryer to cover any sounds. She would look around and then let me know when everyone was out of the bathroom so I could “let loose” and not be totally mortified.
No matter what I did or ate, it was not good for me. It was a running joke with my friends and family: how long was I going to be in the bathroom and how bad was it going to smell? Going to parties, state fairs or anyone’s house was always a big trial for me. Should I use their bathroom or should I leave and find a gas station? All my activities had to revolve around finding a bathroom.
My husband loved camping and canoe trips. I went on two with the family and they were both trips from hell. I had to stop frequently to go to the bathroom in the woods. It was embarrassing and humiliating every time I had to ask them to find somewhere to stop. Finally I stopped going with them.
My many bad episodes caused a downward spiral in my marriage. My husband would get irritated that I didn’t feel well again and became increasingly more distant. I ended up getting divorced.
In the beginning, everyone was so understanding…that is until I had to cancel plans or showed up late because I was stuck in the bathroom for 45 minutes. People have a hard time understanding what a chronic disease entails: they think we have control over when and where we get sick. Once again, I would become the butt of jokes (no pun intended).
Another problem was the accidents. I have had so many that I’ve lost count. When the cramps start and the shaking begins, I look frantically for a bathroom. Sometimes none is immediately available. When I finally find one, by the time I get my pants unzipped I have started to go before I can get my pants down. I have thrown away many pairs of underwear in public restrooms.
Whenever I meet someone new, I always bring up the subject of Crohn’s disease. In the past when not many people had heard of it, I explained it the best I could. I always get the sympathetic looks and murmurs, but people really don’t seem to understand it. I want to help educate people about this disease to bring it out into the open more. Public awareness is helped by the fact that now you see some commercials on television for prescription drugs to treat Crohn’s.
I think this disease absolutely qualifies as a disability. Each day can be so different from the next. Any factor can bring on the symptoms…stress, diet, exercise, state of mind, anything. I never know how I am going to feel from one day to the next. I make plans and then try my best to be calm, eat bland food and hope I have a good day.
When at work, if I have an attack, I can be in the bathroom for 30 to 45 minutes. This is at work! You cannot believe how embarrassing it is to not feel well there and to have to use the same bathroom that five other people might be using at the same time. There are times when I have even left work and gone home to use the bathroom! Trying to keep a job while battling this disease is not easy. But you have to keep working because you need a job for the insurance!
The stress of everyday work is one thing, but there is the additional pressure of watching what you eat and trying to keep your stomach calm while meeting deadlines. It is like fighting a losing battle every day of your life.
I have had this disease for 38 years. The drugs have gotten better at helping to control the symptoms, but even after three surgeries, many different drug therapies and countless doctors, I still get flare-ups which put my life on hold for weeks or months at a time.
UPDATED:
Published: FEBRUARY 2015
Crohn’s link to bacterium in cows opens door to antibiotic treatment
Analysis by Dr. MICHAEL T. COLLINS
Writing from Madison, Wisconsin
Within the last decade, elite scientists around the world have made a positive link between Crohn’s disease and a bug called Mycobacterium avium paratuberculosis (MAP), seen magnified approximately 50,000 times under an electron microscope in the photo to the left. MAP originates in cattle where it causes Johne’s disease, but it has recently been proven that many Crohn’s patients also are infected with MAP, which is probably the cause of their chronic gut inflammation. Now a scientist, who has spent 30 years studying MAP, explains how these new scientific findings open the door to expanded use of antibiotics to treat, and possibly cure, Crohn’s disease.
UPDATED:
Published: JUNE 2015
Medical pioneer from Down Under leads world in Crohn’s treatment
Analysis by WARREN PERLEY
Writing from Montreal
Dr. Thomas Borody of Australia enjoys the highest remission rate of any doctor in the world when it comes to treating Crohn’s patients. Now he and U.S.-based Dr. William Chamberlin, who like Dr. Borody treats Crohn’s as an infectious disease, talk about the antibiotic formulas they use, their success rates, and their views on the future direction of Crohn’s treatments. Microbiologist Dr. Saleh Naser of the University of Central Florida explains why the connection between MAP bacterium and Crohn’s continues to confound most microbiologists and gastroenterologists.