Crohn’s disease

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Narrating Medicine: What I Want You To Know About My Crohn’s Disease

Grace Herman (Courtesy)

Grace Herman (Courtesy)

Grace Herman, of Newton, was diagnosed with Crohn’s Disease at the age of 16. At first, she focused the majority of her efforts on learning to anticipate and cope with the various struggles of living with a chronic disease: the nausea and pain throughout her body, and overwhelming fatigue. Now 24, Grace focuses much of her time on maintaining an overall healthy lifestyle — she has found exercise to be a fantastic way to maintain her health, reduce her stress, and stay attuned to warning signs of illness. A 2014 graduate of McGill University, Grace is now a clinical research coordinator for the Substance Use Disorder Initiative at Massachusetts General Hospital.

Listen above to Herman and her father, John, talk with Massachusetts General Hospital psychiatrists Eugene Beresin and Steve Schlozman about living with a chronic illness.

Here, Grace offers some tips to parents and children on dealing with a chronic illness:

Don’t ‘Google It’

There is no greater jeopardy to your peace of mind than the search function on Google. This was the first thing my doctors told me and I must emphatically endorse their advice. Almost a decade has passed since my diagnosis, and still, the arrival of an unfamiliar pain or symptom tempts me to search for an answer from the most accessible, but not necessarily the most reliable, source. Often, I’ll search instead of picking up the phone to call one of my care providers. And all too often this delay in reaching out has rendered me physically sick. Left to my own devices, I have also been plagued with crushing anxiety about everything I might have. Often, it’s not the case: As one of my amazing physicians, Dr. Annah Abrams, often says, “Look for horses before zebras.”

Choose The Right Doctor

A huge part of finding security in living with a chronic disease is having the right person to assuage your inevitable fears. Parents and children should know that you have the right to take your time and decide who is the best fit. This may not necessarily be the first doctor you see, or even the doctor who makes the initial diagnosis. Try to find someone with whom your child (and you) feel safe — someone you want to talk to. At first, conversations about your medical condition may be awkward and uncomfortable; however, the right doctor will know how to handle this and begin to build a dialogue based on trust and empathy.

Even after you have found a doctor, know that the first few years following a diagnosis can be the most difficult; after all, you are trying to determine (sometimes through trial and error) which treatments are the most effective. Bolster yourselves through this time of uncertainty with the knowledge that you have the best people on your side working toward a common goal. Continue reading

Study: Microbe Imbalance Found In New Crohn’s Disease Patients

High magnification micrograph of Crohn's disease in the colon. (Wikimedia Commons)

High magnification micrograph of Crohn’s disease in the colon. (Wikimedia Commons)

Our recent piece on the nation’s first stool bank touched upon the burgeoning field of microbiomics — exploring the “rain forest” of varied species among the trillions of bacteria that inhabit our bodies.

Today brings some related news, just in from Massachusetts General Hospital: Bacterial populations in our guts appear to be involved in the onset of Crohn’s disease, an inflammatory condition that affects up to 700,000 Americans. Crohn’s has been linked to an immune reaction gone awry, possibly related to an imbalance in the bacterial population, but that connection was not clear. A new study looked at 447 patients with Crohn’s disease and 221 without. From the press release:

Advanced sequencing of the microbiome – the genome of the entire microbial population – in tissue samples taken from sites at the beginning and the end of the large intestine revealed a significant decrease in  diversity in the microbial population of the Crohn’s patients, who had yet to receive any treatment for their disease. The samples revealed an abnormal increase in the proportion of inflammatory organisms in Crohn’s patients and a drop in noninflammatory and beneficial species, compared with the control participants. The imbalance was even greater in patients whose symptoms were more severe and those who had markers of inflammatory activity in tissue samples.

“These results identifying the association of specific bacterial groups with Crohn’s disease provide opportunities to mine the Crohn’s-disease-associated microbiome to develop diagnostics and therapeutic leads,” said senior author Ramnik Xavier, MD, PhD, chief of the MGH Gastrointestinal Unit and director of the MGH Center for the Study of Inflammatory Bowel Disease.

NPR has more coverage here: Mix Of Gut Microbes May Play Role In Crohn’s Disease. And an important note: antibiotics early on may make things worse:

Antibiotics are often prescribed for symptoms suggestive of Crohn’s before a diagnosis is made, but in participants who happened to be taking antibiotics at the time samples were taken, the microbial imbalance was even more pronounced, suggesting that the antibiotic use could actually exacerbate symptoms rather than relieve them, the authors note. Next steps will be to uncover the function of these microbes and their products and to learn how the microbiome and microbial products interact with the patient’s immune system, with the possibility that these interactions could represent the molecular basis for the disease.

I Can’t Wait: Restroom Access Victory For Crohn’s, Colitis Sufferers

(Chatama/Wikimedia Commons)

Catie Rutley was eight years old when she was diagnosed with ulcerative colitis, a painful, chronic condition marked by abdominal pain, fatigue, weight loss, diarrhea and bloody stools. For Catie, one of the most notable symptoms was a frequent, powerful, out-of-the-blue need to use the bathroom.

That’s what happened when she was shopping with her mom at an Ocean State Job Lot shortly after her diagnosis. “I had a really sudden, strong urge to use the bathroom,” said Catie, now 16 and a senior at Sharon High School in Massachusetts. “I went to an employee to ask — I was really nervous, I didn’t know what to say because I was embarrassed and terrified that I’d have an accident in the store right then and there. She told me the bathroom was for employees only and I couldn’t use it.”

Ultimately, Catie’s mom intervened and explained her daughter’s condition – diarrhea attacks and all — in front of the mortified child. “It was definitely embarrassing,” Catie said. She went home and recounted the story to her father, Canton attorney Jonathan Rutley, who felt “embarrassed for my child and what she had to go through.”

It wasn’t Catie’s “first instance of a bathroom emergency,” said Rutley, “but it was the last. I said enough, we’ve got to do something.” He immediately sat down to draft legislation so that no other child or adult suffering from an intestinal or similar disorder would face such public humiliation.

That began a years-long political and emotional odyssey. During that time Rutley gained more and more support — including from lawmakers whose constituents suffered with similar conditions and celebrities who began to speak out. Still, he says, his efforts were blocked by state and national retailers and business groups who said the measure unfairly burdened store owners. “Why single out only retailers?” Retailers Association of Massachusetts President Jon Hurst told the Boston Herald in June. “Why not banks, why not office buildings, why not government buildings? I walk into the State House and see a lot of locked bathrooms…We’re certainly sympathetic…We just don’t think we need a law that ignores the fact that one size doesn’t fit all.”

“I have had embarrassing incidents with my Crohn’s on stage…having to listen to my band open for the Rolling Stones from a Port-a-Potty.” — Mike McCready, lead guitarist, Pearl Jam

Last week, Gov. Deval Patrick signed the co-called “Restroom Access Bill” into law, making Massachusetts part of a trend taking hold across the nation: 12 other states have passed some version of the legislation (Illinois was the first).

Under the new Mass. law, businesses with at least three employees on duty must allow anyone with Crohn’s, colitis, irritable bowel syndrome, a colostomy bag  — or with any other medical condition involving urgent toilet needs — to use an employee-only restroom if public facilities aren’t readily accessible. One catch: sufferers must have a valid doctor’s note or approved ID card verifying their disorder. Shopowners can be fined $100 for failure to approve a valid request. Continue reading