Introduction
When inflammatory bowel disease (IBD) is active, it can be accompanied by an urgent need to use the bathroom.
This is due to a combination of diarrhea or bleeding, as well as the inability of the rectum to stretch or store waste as effectively as it should.
When this occurs, there is cramping and pain with the urgency to evacuate. It is a terrible feeling and the loss of control is one of the hardest things about IBD.
Although the goal for all our patients is stable remission, it is important to have strategies to cope with your condition when it is active, so you are not socially isolated.
When the disease is active or when you feel that your control is unpredictable, the thought of leaving your home becomes a daunting prospect,
in part because it may be a challenge to find a restroom quickly when you are out and about.
In addition, although there are bathrooms in almost every place of business, they are often for employee use only and not available to the public.
The good news is that a number of states now have passed Restroom Access Acts -- legislation that helps make venturing out from home a little easier.
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What is a “Restroom Access Act?”
A Restroom Access Act is a law that requires businesses to make employee-only restrooms available to people with IBD and other chronic medical conditions, as well as pregnancy.
The first Restroom Access Act, which is commonly known as “Ally’s Law,” was passed in Illinois in 2005, thanks to the work of one of my patients, Allyson Bain.
As a teen with active Crohn’s disease, Ally experienced the indignity of being denied access to a store’s employee restroom, and she had an accident at the store.
Click here to read an interview with Ally.
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Which other states have passed a Restroom Access Act?
In addition to Illinois, 11 other states – Minnesota, Texas, Kentucky, Tennessee, Colorado, Ohio, Michigan, Washington, Oregon, Wisconsin, and Connecticut
-- have passed Restroom Access Acts.
Has your state passed a Restroom Access Act? Click here to find out.
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How do I know if a Restroom Access Act is in the works in my state?
The Crohn’s and Colitis Foundation of America (CCFA) monitors advocacy issues related to IBD, so a visit to their website is very helpful. (click here to find your local chapter).
You can also try checking the website for your state legislature (click here to find the website, by selecting the name of your state and “homepage” from the list of content areas).
The websites for many state legislatures allow you to search for bills by keyword (e.g., “restroom”).
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Restroom Access Act legislation has been introduced in my state, what can I do to help it pass?
Contact the senator and/or representative who sponsored the legislation and ask how you can help.
For example you might volunteer to tell your story during committee testimony and rally others to do the same.
Also contact your own representative to discuss the importance of voting for the bill and to share your own personal experiences around the restroom access issue.
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Restroom Access Act legislation has not yet been introduced in my state, what can I do to get the ball rolling?
Arrange to meet with your state representative and senator during their office hours to share your story and the importance of a Restroom Access Act.
Describe how Restroom Access Act legislation has been passed in other states and provide samples of the text (see map below).
Follow up with a letter restating your case and thanking your representative for taking the time to meet with you.
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My state does not yet have a Restroom Access Act. What can I do when I’m away from home and need to use a restroom quickly?
When your disease is active, it’s wise to always know the locations of the closest public restrooms . . . before your need becomes urgent.
Believe it or not, there are websites that you can use to find public toilets (www.sitorsquat.com,
www.thebathroomdiaries.com, and www.mizpee.com/web).
Some of these sites also provide applications that you can access from your cell phone.
If you locate a bathroom, but find there’s a line, politely negotiate your way to the front. Chances are good that folks will understand.
If you are unable to quickly find a public restroom, don’t be afraid to ask to use a bathroom that appears to be only for employees or customers.
Politely explain your situation as firmly and succinctly as possible. Keep an “I Can’t Wait” or a “Medical Alert Restroom Access” card in your wallet and show it to a store employee if necessary.
The “I Can’t Wait” card is a benefit of CCFA membership (www.ccfa.org),
and you can order the “Medical Alert Restroom Access” card from the Foundation for Clinical Research in IBD (www.myibd.org/RestroomMedAlert/index.php).
Just in case, keep an “emergency kit” in your car. Think about including things like an extra change of underwear in a plastic bag, a towel, medicated wipes, a shirt or jacket that you can tie around your waist, and an extra pair of pants.
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Summary
Ideally, your IBD is under excellent control, and you don’t need to worry about uncontrollable symptoms.
You can maximize your control by working with your healthcare team and communicating your condition to them so that your therapy will be adjusted.
Nonetheless, flares can occur suddenly and symptoms can be unpredictable and embarrassing.
It is important to know that there is increasing awareness of the social challenges that arise with IBD and that there are laws to support patients in 12 states.
If your state hasn’t yet passed a similar law, you, like Ally, can make a difference!
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Question: How did you find the courage to go public about your condition when you were just 15?
AB: What made me bold was my upbringing. My parents have been wonderful role models.
They always told my brother and me to take action when we believe in something.
My mom, especially, is very assertive, and she doesn’t think that anyone is too powerful or too big to be challenged.
She always says that if someone says no, don’t give up, because they may eventually say yes.
In addition to teaching me to be assertive, my parents also kept me grounded.
The work I’ve been doing is for everyone, not just for me.
Another factor was that my younger brother Trevor had epilepsy, which has since been cured.
Helping to care for him made me grow up quickly and realize how fragile life can be, so I’ve probably always seemed older than my age.
Then I was diagnosed at 11, before I was in the sixth grade, and being ill also made me grow up more quickly than my peers.
Question: What led up to the work you did to get “Ally’s Law” passed?
AB: When I was in the eighth grade I went to the Illinois state capital in Springfield just months before the incident at Old Navy occurred, where I was denied access to a restroom and had an accident.
On that field trip it was so powerful to see how the political process works. We met with Kathy Ryg, then a state representative, who had distributed a booklet of contact information for state legislators.
After the Old Navy incident, I was crying while walking back to the car, and my mom said: “Let’s work to make sure that this never happens to you or anyone else again.”
So I found Kathy Ryg’s information in that booklet and called her. I told her the story about what had happened to me, and I told her that it should never happen to anyone again.
While Kathy Ryg worked on the legislative front, my dad suggested that my mom and I contact the media. The issue just grew from there. I was impressed with how many people got involved.
Question: What was it like for you when the law was passed in August 2005?
AB: It was surreal when it passed, and it has been one of the best experiences of my life. At the time I had gone through some complications with my Crohn’s disease, and I was having some problems with friends.
After the Illinois governor signed the legislation into law, I felt so empowered. I also realized how much I enjoyed being active politically and raising awareness about IBD.
Question: Do you have any plans to get this law passed elsewhere?
AB: I’m working to get the Restroom Access legislation passed on a federal level.
It’s very different from getting a law passed on a state level, and it’s much more difficult.
But I fight harder when others might get discouraged. Illinois Representative Carol Sente’s office and staff have been a great help to me.
Question: What is your current state of health?
AB: I’ve been feeling great for the past 4 or 5 years. I’m in remission, thanks to Dr. Rubin at the University of Chicago.
I was at my sickest when I was 14. Dr. Rubin promised remission for me in the next 6 months, and he kept his promise.
Since my surgeries, I’ve been feeling very healthy. I’ve also learned that people with Crohn’s disease should expect to be well and seek proactive care,
which, when provided at the right time, can help to avoid surgeries later.
Question: What are you studying in college?
AB: I am a student at Lake Forest College just outside Chicago, and I plan to major in communications and minor in political science.
Question: Besides college, what occupies your time these days?
AB: I have a summer internship with United Ostomy Associations of America, where I’m working on social media.
I also volunteer at a health center, putting together programs and events on nutrition and stress.
Besides continuing my work to promote federal legislation for restroom access, I’ve started writing a memoir detailing the origins of “Ally’s Law” and what it’s like to live with a chronic illness at a young age.
The title of the book is I Can’t Wait. It’s been nice to finally take the time to look back and reflect on my illness.
I’m also a member of Crohn’s and Colitis Foundation of America (CCFA) National Youth Leadership Council, which is a young adult leadership networking and advocates’ group.