Digestive Health Newsletter

Inflammatory Bowel Disease and Restroom Access

David T. Rubin, MD

September 26, 2013

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 and 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 frustrations about IBD. Although the goal for all of our patients is stable remission, it is important to have strategies to cope with your condition when it is active, so you do not feel socially isolated. When the disease is active or when you feel that your control is unpredictable, the thought of leaving your home can become a daunting prospect, in part because it may be a challenge to find a restroom quickly when you are out and about. 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 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 to as pregnant women. 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, at least 14 other states—Colorado, Connecticut, Kentucky, Maine, Maryland (effective October 1), Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington, and Wisconsin—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 its website is very helpful. (Click here to find your local chapter.) You can also check your state legislature website to see if there is a pending bill. Just click here for a directory, select your state and "Home Page." Once there, you may be able to search by keyword (eg, "restroom").

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A Restroom Access Act bill has been introduced in my state. What can I do to help it pass?

Contact the senator or representative who sponsored the bill and ask how you can help. It is also helpful to find out which committee(s) will be voting on the bill and contact those members before the hearing. 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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A Restroom Access Act bill 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. For more details, take a look at the CCFA's Advocacy Toolkit, which includes a section that specifically discusses how to advocate for restroom access in your state.

Be prepared to respond to any arguments against restroom access. For example, opponents may express concern about privacy or employee safety. You will want to be able to highlight the states in which restroom access legislation has passed without any negative issues, as well as note any proposed exclusions to such an act (eg, perhaps the proposed bill would apply only if there are a certain number of employees present, or would not apply to gas stations, banks, or other businesses where security would be a significant issue). Finally, it may help to point out that many states include a clause that protects against liability.

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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 can help you find public toilets (www.sitorsquat.com or www.thebathroomdiaries.com). There are even mobile phone applications such as Toilet Finder and Find Toilets. 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 paying 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).

If you ask to use a restroom and are denied access, first take care of your health needs. Just in case, keep an "emergency kit" in your car. Think about including items such as 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. Once you've had a chance to collect your thoughts, jot down information about the incident (eg, where, when, who) and then consider writing to your state representative and attorney general, as well as to the national headquarters of the store that denied you access. You might also want to consider contacting the Foundation for Clinical Research in IBD, since they have advocated for IBD patients in the past.

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Conclusion

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 about 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 15 states. If your state hasn't yet passed a similar law, you, like Ally, can make a difference!

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Interview with Ally Bain

Ally Bain, 23, an incoming Juris Doctor candidate at Northwestern University Law School, has Crohn's disease. She is an aspiring attorney for disability law, a political activist, and an advocate for inflammatory bowel disease (IBD) awareness. Through her belief that one voice can make a difference, she helped create "Ally's Law," or the Restroom Access Act, and works to break the silence and stigma about IBD and encourage a culture of empowerment for those who suffer from the disease

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 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 and I 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 Rep Carol Sente's office and staff have been a great help to me, as have other people who have acted as mentors and advisors throughout this pursuit.

Question: What is your current state of health?

AB: I've been feeling great for the past 8 or 9 years. I'm in remission, thanks to Dr Rubin and his medical team at the University of Chicago. I was at my sickest when I was 14. Dr Rubin promised remission for me in the next six months, and he kept his promise. Since my surgeries, I've been feeling very healthy. I've also learned that people with IBD, as with other medical conditions, should expect to be well and seek quality medical care.

Question: What did you study in college?

AB: I graduated from Lake Forest College, which is just outside Chicago, in May 2012 with a major in Communication and minors in Politics and Legal Studies. I remain interested with all of those areas of study, which I know will continue to help me as I pursue a career in law and advocacy.

Question: What occupies your time these days?

AB: I just wrapped up a 14-month fellowship at the Robert H. Smith Center for the Constitution at James Madison's Montpelier in Virginia. As the Center's Grace Elizabeth Groner Program Fellow, I led on-site programs and staff trainings, coordinated the Virginia We the People program, and created and managed the Center's social media accounts. I will also be attending Northwestern University School of Law and plan to focus on civil and disability rights. At the same time, I will continue to seek passage of the Restroom Access Act, or Ally's Law, in other states, on a federal level, and even in other countries. I feel honored for the opportunities I have experienced and for the ones I have yet to discover.

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This is an update of a newsletter first published in July 2010

If you found this article interesting, you may also be interested in our previous Your Digestive Health newsletters:

About the author
David T. Rubin, MD

David T. Rubin, MD

David T. Rubin, MD, is a Professor of Medicine in the Department of Medicine at The University of Chicago Medical Center, where he is also Co-Director of the Inflammatory Bowel Disease Center, Co-Director of the Advanced Fellowship in Inflammatory Bowel Disease, and Associate Section Chief for Educational Programs in the Section of Gastroenterology, Hepatology, and Nutrition. Dr Rubin has been an invited reviewer for such journals as Gastroenterology, American Journal of Gastroenterology, Clinical Gastroenterology and Hepatology, and Inflammatory Bowel Diseases. An avid researcher, Dr Rubin's interests include novel therapies for inflammatory bowel disease, prevention of colon cancer in colitis, and clinical medical ethics. He is currently the principal investigator for multiple research projects and clinical trials. Dr Rubin makes frequent media appearances and has authored a best-selling book on IBD for gastroenterologists.

About the author
David T. Rubin, MD

David T. Rubin, MD

David T. Rubin, MD, is a Professor of Medicine in the Department of Medicine at The University of Chicago Medical Center, where he is also Co-Director of the Inflammatory Bowel Disease Center, Co-Director of the Advanced Fellowship in Inflammatory Bowel Disease, and Associate Section Chief for Educational Programs in the Section of Gastroenterology, Hepatology, and Nutrition. Dr Rubin has been an invited reviewer for such journals as Gastroenterology, American Journal of Gastroenterology, Clinical Gastroenterology and Hepatology, and Inflammatory Bowel Diseases. An avid researcher, Dr Rubin's interests include novel therapies for inflammatory bowel disease, prevention of colon cancer in colitis, and clinical medical ethics. He is currently the principal investigator for multiple research projects and clinical trials. Dr Rubin makes frequent media appearances and has authored a best-selling book on IBD for gastroenterologists.

About the author
David T. Rubin, MD

David T. Rubin, MD

David T. Rubin, MD, is a Professor of Medicine in the Department of Medicine at The University of Chicago Medical Center, where he is also Co-Director of the Inflammatory Bowel Disease Center, Co-Director of the Advanced Fellowship in Inflammatory Bowel Disease, and Associate Section Chief for Educational Programs in the Section of Gastroenterology, Hepatology, and Nutrition. Dr Rubin has been an invited reviewer for such journals as Gastroenterology, American Journal of Gastroenterology, Clinical Gastroenterology and Hepatology, and Inflammatory Bowel Diseases. An avid researcher, Dr Rubin's interests include novel therapies for inflammatory bowel disease, prevention of colon cancer in colitis, and clinical medical ethics. He is currently the principal investigator for multiple research projects and clinical trials. Dr Rubin makes frequent media appearances and has authored a best-selling book on IBD for gastroenterologists.

Important Safety Information about AZASAN

WARNING: Chronic immunosuppression with this purine antimetabolite increases risk of malignancy in humans. Reports of malignancy include post-transplant lymphoma and hepatosplenic T-cell lymphoma (HSTCL) in patients with inflammatory bowel disease. Physicians using this drug should be very familiar with this risk as well as with the mutagenic potential to both men and women and with possible hematologic toxicities. Physicians should inform patients of the risk of malignancy with AZASAN. See WARNINGS.

AZASAN® (azathioprine tablets) 75/100 mg is indicated as an adjunct for the prevention of rejection in renal homotransplantations, and also for the management of active rheumatoid arthritis to reduce signs and symptoms. Patients are at increased risk of developing lymphoma and other malignancies, particularly of the skin. Exposure to sunlight and ultraviolet light should be limited by wearing protective clothing and a high SPF sunscreen. Patients should have complete blood count (CBC), including platelet counts periodically during treatment. TPMT testing should be conducted to identify with absent or reduced TPMT activity. The most commonly reported side effects associated with AZASAN therapy are leukopenia and/or thrombocytopenia, secondary infections, neoplasia, nausea, vomiting, diarrhea, fever, myalgias, skin rashes, and hepatotoxicity. AZASAN therapy should be given cautiously when used concomitantly with allopurinol, ACE inhibitors, and other agents affecting myelopoiesis. Patients with rheumatoid arthritis previously treated with alkylating agents (cyclophosphamide, chlorambucil, melphalan, or others) may have a prohibitive risk of malignancy if treated with AZASAN. AZASAN is contraindicated in pregnant and lactating women and in patients who have shown hypersensitivity to this product.

Consult with your physician to see if this product is right for you.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch/ or call 1-800-FDA-1088.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center
Phone: 1‑800‑508‑0024
Fax: 1‑510‑595‑8183
Email: salix@medcomsol.com

Please see complete Prescribing Information for AZASAN, including BOXED WARNING.pdf

Indication for METOZOLV ODT

METOZOLV® ODT is indicated for short-term (4 to 12 weeks) therapy for adults with symptomatic, documented gastroesophageal reflux disease that fails to respond to conventional therapy (refractory GERD) and for the relief of symptoms associated with acute and recurrent diabetic gastroparesis (gastric stasis) in adults.

Important Safety Information about METOZOLV ODT

WARNING: TARDIVE DYSKINESIA

See full prescribing information for complete boxed warning.

Treatment with metoclopramide can cause tardive dyskinesia, a serious movement disorder that is often irreversible. The risk of developing tardive dyskinesia increases with the duration of treatment and the total cumulative dose.

Metoclopramide therapy should be discontinued in patients who develop signs or symptoms of tardive dyskinesia. There is no known treatment for tardive dyskinesia. In some patients, symptoms may lessen or resolve after metoclopramide treatment is stopped.

Treatment with metoclopramide for longer than 12 weeks should be avoided in all but rare cases where therapeutic benefit is thought to outweigh the risk of developing tardive dyskinesia.

Do not take METOZOLV ODT (metoclopramide hydrochloride) if you have stomach or intestine problems that could get worse with METOZOLV ODT, such as bleeding, blockage or a tear in your stomach or bowel wall; have an adrenal tumor called pheochromocytoma; are allergic to metoclopramide or any of the ingredients in METOZOLV ODT; take medicines that can cause uncontrolled movements, such as medicines for mental illness; or have seizures. 

METOZOLV ODT can cause serious side effects, including:
Tardive dyskinesia (abnormal muscle movements): these movements happen mostly in the face muscles. You cannot control these movements. They may not go away even after stopping METOZOLV ODT. There is no treatment for tardive dyskinesia, but symptoms may lessen or go away over time after you stop taking METOZOLV ODT.

Uncontrolled spasms of your face and neck muscles, or muscles of your body, arms, and legs (dystonia): these muscle spasms can cause abnormal movements and body positions. These spasms usually start within the first 2 days of treatment. These spasms happen more often in children and adults younger than 30.

Parkinsonism: symptoms include slight shaking, body stiffness, trouble moving or keeping your balance. If you have Parkinson's Disease, your symptoms may become worse while you are taking METOZOLV ODT.

Neuroleptic Malignant Syndrome (NMS): NMS is a rare but very serious condition that can happen with METOZOLV ODT. NMS can cause death and must be treated in a hospital. Symptoms of NMS include: high fever, stiff muscles, problems thinking, very fast or uneven heartbeat, and increased sweating.

Depression, thoughts about suicide, and suicide: some people who take METOZOLV ODT may become depressed. You may have thoughts about hurting or killing yourself. Some people who have taken metoclopramide products have ended their own lives (suicide).

High blood pressure: METOZOLV ODT can cause your blood pressure to increase.

Too much body water: people who have certain liver problems or heart failure and take METOZOLV ODT may hold too much water in their body (fluid retention). Tell your doctor right away if you have sudden weight gain, or swelling of your hands, legs, or feet.

Symptoms from stopping (withdrawal) METOZOLV ODT: you may still have side effects after you stop METOZOLV ODT such as headaches, and feeling dizzy or nervous.

METOZOLV ODT comes as a tablet that melts in your mouth.  Take METOZOLV ODT exactly as prescribed by your doctor. Do not change your dose unless your doctor tells you to.  You should not take METOZOLV ODT for more than 12 weeks. Take METOZOLV ODT at least 30 minutes before eating and at bedtime. 

It is not known if METOZOLV ODT is safe or works in children.

The elderly may be at greater risk for sleepiness and movement disorders with METOZOLV ODT.

If you have kidney problems, speak with your healthcare provider before taking METOZOLV ODT.

The most common side effects of METOZOLV ODT are:  headache, nausea, vomiting, tiredness, and sleepiness. You may have more side effects the longer you take METOZOLV ODT and the more you take. Tell your doctor about any side effects that bother you or do not go away. These are not all the possible side effects of METOZOLV ODT.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch/ or call 1-800-FDA-1088.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center
Phone: 1‑800‑508‑0024
Fax: 1‑510‑595‑8183
Email: salix@medcomsol.com

Please see complete Prescribing Information for METOZOLV ODT, including BOXED WARNING.pdf

Indication for OSMOPREP

OSMOPREP® (sodium phosphate monobasic monohydrate, USP, and sodium phosphate dibasic anhydrous, USP) Tablets are indicated for cleansing of the colon as a preparation for colonoscopy in adults 18 years of age or older.

Important Safety Information about OSMOPREP

WARNINGS

There have been rare, but serious reports of acute phosphate nephropathy in patients who received oral sodium phosphate products for colon cleansing prior to colonoscopy. Some cases have resulted in permanent impairment of renal function and some patients required long–term dialysis. While some cases have occurred in patients without identifiable risk factors, patients at increased risk of acute phosphate nephropathy may include those with increased age, hypovolemia, increased bowel transit time (such as bowel obstruction), active colitis, or baseline kidney disease, and those using medicines that affect renal perfusion or function (such as diuretics, angiotensin converting enzyme [ACE] inhibitors, angiotensin receptor blockers [ARBs], and possibly nonsteroidal anti–inflammatory drugs [NSAIDs]).

It is important to use the dose and dosing regimen as recommended (PM/AM split dose).

Do not take OSMOPREP® (sodium phosphate monobasic monohydrate, USP, and sodium phosphate dibasic anhydrous, USP) if you have had a kidney biopsy that shows you have kidney problems because of too much phosphate, a blockage of your intestines, had stomach surgery involving stapling or bypass, a hole or opening in your intestines, significant irritation of the bowels such as toxic megacolon or toxic colitis, or you are allergic to sodium phosphate salts or any of the ingredients in OSMOPREP.

Rare, but serious kidney problems can happen in people who take medicines made with sodium phosphate, including OSMOPREP, to clean the colon before colonoscopy. These kidney problems can sometimes lead to kidney failure or the need for dialysis. These problems occur within a few days, but may develop several months after taking OSMOPREP.

Conditions that can make you more at risk for having serious kidney problems with OSMOPREP include: the loss of too much body fluid (dehydration), slow moving bowels, bowels blocked with stool (constipation), severe stomach pain or bloating, any disease that causes bowel inflammation (colitis), kidney disease or kidney problems, heart failure, and the use of water pills or non-steroidal anti-inflammatory drugs (NSAIDS). Your age may also affect your risk for having kidney problems with OSMOPREP. Talk to your doctor before you start to take OSMOPREP.

If you have a history of seizures or are at risk for seizures due to certain medications (such as tricyclic antidepressants), are undergoing withdrawal from alcohol or benzodiazepines, or if you have hyponatremia, you should talk to your doctor before you take OSMOPREP.

If you have been told you are at high risk for developing an arrhythmias or irregular heartbeat, you should tell your doctor.

It is important to drink sufficient liquids before, during, and after use of OSMOPREP.

If you have had an inflammatory bowel disease diagnosis or a blockage/opening of your intestines, tell your doctor before taking OSMOPREP.

If you are pregnant, planning to become pregnant, or nursing, talk to your healthcare provider before taking OSMOPREP.

In clinical trials, the most common side effects occurring in at least 3% of adult patients taking OSMOPREP were bloating, abdominal (stomach) pain, nausea, and vomiting.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch/ or call 1-800-FDA-1088.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center
Phone: 1‑800‑508‑0024
Fax: 1‑510‑595‑8183
Email: salix@medcomsol.com

Please see complete Prescribing Information for OSMOPREP, including BOXED WARNING.

The information contained on this page is intended for US patients, healthcare professionals, and pharmacists only.

SWB 13/20