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.

Approximately 1.4 million people in the U.S. suffer from IBD, according to the Crohn’s and Colitis Foundation of America, which estimates that approximately 10 percent of IBD sufferers are under 18. At that age, it’s pretty hard to explain a mad bathroom dash to a stranger working at a mall store, Catie Rutley said. Indeed, she recalled that one of her toughest moments during the years-long fight to get the access law approved was testifying about her condition in front of Beacon Hill lawmakers — the first time as a 10 year old. “That was the craziest thing,” she said. “And I was very nervous about it.”

The bill passed the state House several times but stalled  in the Senate, said Stephen Marcus, a Braintree, Mass. attorney and Crohn’s disease sufferer who got involved in campaigning for the access law after getting extremely “fired up” by the Herald article.

Jonathan Rutley said finally this year,  a “convergence” of events helped propel the bill forward, including new membership in the state Senate, a face-to-face meeting between Senate President Therese Murray and Catie, and some “celebrity” lobbying.

Mike McCready, the lead guitarist for Pearl Jam, wrote a letter to Mass. senators in July detailing the kind of humiliation he has experienced due to his Crohn’s disease. It reads, in part:

A letter from Mike McCready, lead guitarist for Pearl Jam and a Crohn’s disease sufferer

A lesser known luminary to some, but a bigwig in this state, Boston Mayor Tom Menino, also a Crohn’s sufferer, got involved in the effort as well, sending a letter to the governor last month urging the bill’s passage. “As a person with Crohn’s disease,” Menino wrote. “I have been working with others who battle these diseases to advocate for this important legislation. It is particularly important for teens and young adults, who may not be assertive enough to ask for access.”

The national Crohn’s and Colitis Foundation of America also became heavily involved and said enactment of the Mass. law represents another important step toward providing essential relief to millions suffering from IBD.

“It adds another state to a growing list of states that are recognizing the problems faced by adults and children struggling with Crohn’s, colitis and related diseases,” Richard Geswell, president of the national organization said in a statement. Geswell added that the group would like to see the restroom access requirement incorporated into the Americans With Disabilities Act so it would apply uniformly nationwide.

In Massachusetts, Marcus said, the final law includes several provisions to address concerns of the business community. Among them:

– Exempting stores from liability if someone using an employee-only restroom is injured (unless the business is negligent)

– Specifying that stores do not have to permit access if it would create a health or safety risk for the individual or an obvious security risk for the business

– Stating that stores do not have to alter their facilities to accommodate individuals with IBD

Looking back over the protracted political effort, Jonathan Rutley said: “It was pretty emotional to carry this fight. Other parents carry bigger fights than we have, but this was vindication…and the right thing to do.”

Catie has been in remission for six years, but still takes medications daily to keep her colitis symptoms in check. She said she was thrilled when the law finally passed. “This is really important,” she said. “There are people who are like I was…not comfortable speaking up about why they need the bathroom right away. This law is something that allows us to not have a fear of going out in public. It allows us to still have a shred of dignity.”

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  • Jay
  • http://www.facebook.com/danny.mermingezsr.1 Danny Mermingez Sr.

    i have coilitis for 18 years now and i think its about time the public places are being pushed to make restroom available for those with special needs and the elderly… too many restaurants and markets say employees only…..Thank you

  • Rita

    Being the mother of a young man with Ulcerative Colitis – I say “what took so long?” but am grateful that this law is on the books.

  • Wendy

    Many persons with IBD, UC and Crohn’s have found the diet found in the book, Breaking the Vicious Cycle by (the late) Elaine Gottschall to be very effective in eliminating the dreadful symptoms and the mad dashes to the bathroom and, in the long term, healing the gut. This diet did wonders for me (UC) and I have never felt better.

    Look up Elaine Gottschall on Youtube for her insightful TV interviews. The official website for the book is: http://www.breakingtheviciouscycle.info. There is a support group at http://health.groups.yahoo.com/group/BTVC-SCD

    The food on this diet is delicious. There are many recipe books too. This diet was designed by an MD in the 1950′s. In a nut shell the diet is – all food at the beginning is cooked, peeled and seeded. No grains, no starches and no sugars except honey and saccharine.

    This book came out in 1994 and is in it’s thirteenth printing because it works. Hope to see you posting on the yahoo group. The new law is great but the best thing is not to need a special card anymore.

    By the way, vendors, many persons, including me, do not patronize places without decent available public restrooms. Besides, IBD, many persons are on medications with a side effect of the need for a toilet or it is “that time of the month.”

  • Dede Cummings

    This is awesome news! Hope it gets passed in every state!

  • jennifer

    Every state needs to do this! Especially when more and more people getting diagnosed daily

  • Pam K

    This is frightening that one might need to carry a document to be allowed to use a bathroom. It should be on a “need to go” basis. Raise your hand if you have never had an urgent moment when you were concerned about an unpleasant and embarassing moment. No one should have to prove a medical necessity in order to be given access to to a toilet and in a crowd it is just courtesy to allow the young/old and distressed to go first. (By the way–no hands are yet raised).

  • CC

    Like handicapped parking permits, these will be given out like Halloween candy. We will see an enormous surge in diagnosis. And as a person who has to clean the bathroom at work, I have to say I’m not looking forward to the cleaning of the bathroom once the Poo Emergency ID cards are given out. Explosive diarrhea diagnosis? Sure, come on in!

    • CC2

      Poor you. All of us with Crohn’s and Colitis feel sorry for you. And your poor attitude.

    • Cyndi

      I’m sure lots of people will be rushing to their doctors to be diagnosed with an autoimmune disease that produces severe abdominal pain, vomiting, nausea and diarrhea and fatigue. among other symptoms. Oh, not to mention frequent hospital stays for intestinal blockages, requiring a tube that goes down their nose and into their stomach. Add on lots of pills and in my case, an injection in my stomach every other week that caused a nasty, and very painful case of folliculitis, a skin infection and a lowered immune system, I know it’s been a party for me.

      Some people are even so lucky, they get to have parts of their intestines removed. Others get to eat through a tube for their rest of their lives! I haven’t had those things happen yet, but sign me up!

    • KP

      IBD isn’t a matter of having a loose bowel movement or two. It’s a debilitating life-long illness, and immature people like you are the reason that it’s an embarrassing disease to live with. In fact, while this is an admirable step forward, it will still be embarrassing to hand over a card stating to a stranger that you’re about to have an urgent bowel movement. Furthermore, this isn’t medicinal marijuana cards we’re talking about. I doubt the masses will be booking an appointment for a colonoscopy just so they can have the right to use any restroom. And yes, I too have worked in retail and have had the task of cleaning the restroom, but would never have suggested that it would be preferable for someone to have a humiliating accident than to permit access to the restroom. Grow up.

  • Eric

    I think this is a great step forward for those who suffer from IBD… But I wonder if anyone would know of something like this going on in Canada?

  • Boltgun4slavecattle

    Dude, really? We need a law for this? This definitely falls under Jerry Brown’s recent reminder to the liberals of his state that “not every human problem deserves a law.”

    Just carry a concealed weapon and display it at the necessary time if you get any pushback. Problem solved. Secondary strategy: embrace the pain and do it right there on the floor, using whatever paper or clothing merchandise of theirs is handy to wipe yourself, then leave and tell them to clean up the rest. Like Walter Sobchak said, “This is what happens . . .”

  • singingsupernurse

    as a person with CD, a sign that says “No public bathroom” strikes fear into my heart

    • Heather Dube

      Same here. Enough so, that I avoid patronizing those places, unless it will only be five minutes or so in and out.

  • http://twitter.com/cynthiahintz Cynthia Hintz

    My nurses cap off to all of you who got this Bill passed and signed into law. This Bill/Law now needs to go national. Let’s get it done for all of the people who suffer from these debilitaing dieases!

  • tonbo0422

    I don’t have Chrohn’s but I sure know about needing to use a bathroom — I was in Japan and not in the greatest of health one day and I found I had to use a bathroom in an almighty tearing hurry or I felt I would explode. Thank God I was in the Land of Bathrooms! I reached one at the train station I was at within 30 seconds. Crohn’s sufferers are highly recommended to live in Japan.

  • Cherri B

    And yes, it could be a national initiative that could start with empathy training for the differences of someone other than self at early ages. Kudos to Massachusetts, the state that sees the world, not as they see it alone, but as it is to all citizens.

  • Cherri B

    Crohn, not Crohn’s. I know, I know, even the website uses the apostrophe, but no one ever bothered to look it up, I guess. And it’s easier to just say Crohn’s, but that doesn’t make that use correct. Crohn disease. The disease doesn’t belong to Mr. Crohn, it’s just named after his work on gastroenteritis. Wikipedia, the slayer of language. lol

    • Alison Rose

      I’m as “word-nerdy” as they come, but I’m not sure why you think it’s not Crohn’s with an apostrophe. The Crohn’s and Colitis Foundation of America (CCFA.org) probably knows how to spell it, along with every doctor I’ve had for the last 18 years–LOL! BTW, he was DOCTOR Crohn, not MISTER Crohn. :-)

  • Jessa

    This is also great news for people with chronic interstitial cystitis, a bladder condition that can also create sudden, powerful urges. What retailers don’t realize is that the public bathrooms in such a building are often too far away for sufferers and so they refuse to shop at the mall — which means loss of business. It is a shame that simple human kindness toward someone in distress is not enough, but very reassuring that access will soon be possible. I hope to see this become adopted by all 50 states.

  • Melissa Ludtke

    To all of those who fought for this law to be passed, I say “thank you.” I watched for too many years as my brother suffered from the debilitating effects of Crohn’s. Dealing with the pain associated with this disease is only one aspect of the challenge he and others faced; the other was this one — having access, when he needed it, to a bathroom. This can be humiliating for anyone to have to go through, and to have this burden added to those already carried by those who suffer with this disease is absolutely outrageous and unnecessary. I am thrilled to know that people acted to right this wrong — and that they persevered until the necessary changes in the law came to pass.

  • D.Williams

    I worked in a jewelry store inside a large shopping mall. We had one employee bathroom in the store. We used to keep our purses on shelves in the bathroom. There was very little “off the floor” space there because each sq ft of space rents for such a high price. It worked because we all trusted each other. We would point customers to the bathroom down the hall. Seems invasive to me.

    • Dan B

      Seems to me an easy fix to accommodate people with urgent needs and medical necessities. I wouldn’t leave my wallet lying around a company toilet in any event, and surely a space under a jewelry counter for a bag or backpack would be both more secure and accessible. But to characterize the opening one’s toilet facilities as “invasive” is a bit excessive. When did empathy become so unvalued? Watching a person have a humiliating accident in front of you because you would not let them use the toilet facilities can be characterized in many worse ways than invasive, say insensitive, cruel even.

      • http://www.facebook.com/rickywilks Ricky Wilks

        I think you would be hard pressed to find any retail establishment, much less a jewelry store, that would allow employees to leave their personal bags under a register or jewelry counter — it’s actually unthinkable. Also, businesses do not keep their restrooms all to themselves to be selfish, there are liability issues regarding personal injury, cleaning supplies, etc. I am all for allowing people with medical issues access, but there really should be a provision that allows for the extra liability the businesses have to take on.

        • charlotte

          The article mentions that there is a provision in the law protecting against the liability. Is this not the case?

          • http://www.facebook.com/rickywilks Ricky Wilks

            “unless the business is negligent” – that phrase is far too vague.

  • Steve

    This should be fought on a national level; it is very sad,however, that those of us with IBD have to fight to have the right to use a bathroom.

  • Maria s

    Every state needs to allow access to all IBD indiviguals! As a mother with a son with Crohn’s I can totally relate to this situation!

    • http://www.facebook.com/people/Shellie-Carper/100001494966835 Shellie Carper

      my son has crohn’s disease, too and I agree – EVERY state should have this!