There aren’t as many men who are vocal in the inflammatory bowel disease (IBD) space as there are women. Crohn’s disease and ulcerative colitis affect men as often as they do women, but fewer men seem comfortable being public about their disease.
That’s why Carlos “CJ” Cabrera, who also goes by CJ Papuro, entered the IBD community after his diagnosis of ulcerative colitis. He gives an overview of how difficult it was to be diagnosed as a US veteran using the Veterans Health Administration, his struggles with finding his way with nutrition, the ways in which IBD has affected him as a man, and his advice for other men.
Have you ever been out in public and needed a toilet — but there wasn’t one available?
This has happened to everyone who lives with an inflammatory bowel disease (IBD, Crohn’s disease or ulcerative colitis), which is why so many of us have “bathroom accident” stories. Needing to use the bathroom is a basic human need, but it’s treated like an afterthought. That’s where the Restroom Access Act comes into play: a law passed in several states that allows people to request access to a toilet when they live with certain conditions.
There is no such law currently in California. That’s hopefully going to change thanks to the efforts of Ashlyn Saltzburg and Kelly Silk. Ashlyn is a teenager living with IBD and Kelly is her mom. Their effort to get a law passed in California is nothing short of heroic. Learn about how they got started on this journey to have the Restroom Access Act passed in California, and how you can help.
Send your letters of support for AB 1632 to Assemblymember Weber’s Legislative Assistant, Raymond G. Contreras: firstname.lastname@example.org
Having surgery for ulcerative colitis comes with a lot of unknowns. J-pouch surgery in particular causes worry, which is understandable. However, it’s important to know that most of the time, this surgery is successful and people go on to live well.
Having j-pouch surgery for me has meant I am able to do a lot of things that I could never have done with ulcerative colitis. That includes hiking, camping, and white water rafting. Part of these types of trips include time without running water or a flushing toilet. And a day out on a raft in the water means no bathroom access at all.
I realized that some people may think outdoor activities aren’t a reality after surgery. But they’re absolutely possible, as well as many more adventures. For that reason, I thought I’d lay out how I plan before going on outdoor activities.
There are significant unmet needs for IBD patients that include pain control, sleep disturbances, anxiety, and depression. Some patients turn to medical cannabis for these symptoms. But is that a good idea, does it work, and what should patients and their doctors know about medical cannabis? To answer these questions and more, Amber talks to cannabis and IBD expert Dr Jami Kinnucan, who is a Senior Associate Consultant in the Section of Gastroenterology and Hepatology at the Mayo Clinic in Jacksonville, Florida.
You’ve probably said something like this: I know I have. You’ve also probably been on the receiving end of it as well. But are you truly prepared to help someone who is experiencing a crisis? If you’re the one in a crisis, would you really reach out for help, or accept the help that’s offered?
When you think of Crohn’s disease or ulcerative colitis, you might not think of physical therapy. But physical therapy and pelvic floor therapy can be integral to helping with function, pain, and having better bowel movements. To learn more, I connected with Nancy Cullinane, who is a Board-Certified Women’s Health Clinical Specialist at Overlake Hospital and Clinics Outpatient Rehab in Washington State, and Christine Morgan, who is a Board-Certified Sports Clinical Specialist and the Director of Clinical Education at the Florida Southern College School of Physical Therapy. They describe the ways in which a physical therapist can help with some of the issues that crop up with inflammatory bowel disease (IBD) and how you can find a physical therapist to help you.
Crohn’s disease and ulcerative colitis affect the whole person. We talk about how it causes inflammation in the digestive tract, but really it affects not only our bodies, but also our emotions, our families, our work, and our social lives.
There are tools available to address the psychosocial impact of inflammatory bowel disease (IBD). Learn what’s available to you from Dr Jessica Naftaly, a GI behavioral health fellow at the University of Michigan and Amy Bugwadia, higher education coordinator for Generation Patient, Teaching Assistant at Stanford University School of Medicine, ulcerative colitis patient, and key opinion leader in the IBD community.
Being in a wedding party is a difficult time when you’re diagnosed young with inflammatory bowel disease (IBD). While it is an honor to be asked to participate, for me, it came with the challenges of being fitted for a dress while living with severe ulcerative colitis.
When I was in my early 20s, like many women, I was a frequent bridesmaid. In some cases, this meant being fitted for a dress that was picked out by the bride. All the women in the wedding party would order the same dress, in the proper size, and have it altered, if necessary.
Whether in remission or not, the day-to-day of life with IBD can be challenging. Living with Crohn’s disease or ulcerative colitis, even when feeling well, might mean making lifestyle changes, going to doctor’s appointments, and taking medications. Many people are diagnosed young, at a time when their friends aren’t going through anything similar. To understand how people might deal effectively with these changes, Amber talks with Dr Sandra Quezada, a gastroenterologist who specializes in IBD at the University of Maryland Medical Center and Varada Srivastava, a Crohn’s disease patient and biotechnology major who is also a 2022 Crohn’s and Colitis Young Adults Network fellow.
Myths and misconceptions about IBD are common. Even amongst patients, there’s things that take time and education to understand because the things that swirl around in the public consciousness are not always true. To help understand why we can’t get rid of some of these common misconceptions, Amber Tresca is joined by gastroenterologist and IBDologist Siobhan Proksell, MD, and ulcerative colitis and irritable bowel syndrome (IBS) patient advocate Molly Dunham-Friel, MPH of Better Bellies By Molly.