Ostomy surgery can improve quality of life for people with IBD but it is still not discussed often enough, or early enough, in the disease process. This leaves patients to cope with the surgery and the acceptance of an ostomy during a time when they are already critically ill. For Austin Powers, who goes by The Ostomy Guy, he exhausted all his possibilities to treat complications from Crohn’s disease before having surgery to place an ostomy. It was several more years before a quick encounter with another ostomate set him on the journey of acceptance. Today, Austin runs a podcast and has written a book about his experiences, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.Continue reading
Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn’t mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn’s disease. She’s an ostomate, but she’s also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn’s disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn’t know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie’s advocacy in the ostomy community touched one family and gave them hope.Continue reading
People with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis) are understandably concerned about the novel coronavirus, and the disease it causes, COVID-19, spreading in their community. People who have certain medical conditions and/or are receiving immunosuppressive medications may be at a greater risk of complications for COVID-19. There are some guidelines put out specifically for people with IBD that can help in making decisions during this time. On this page you will find trusted and verifiable resources that help you as you make choices regarding travel, medications, and everyday life during the pandemic.
May 3, 2020 Update
There are now 877 reported cases of COVID-19 in people with IBD. There have been 30 deaths entered into the database: 23 of these were in people over the age of 60. See the update from the SECURE-IBD Registry.*
The International Organization For the Study of Inflammatory Bowel Disease met on Friday, March 20th. They continue to meet every week. Some of the recommendations from this group were reported by David Rubin, MD of the University of Chicago via Twitter (see original Tweets or view the thread here) and included:
- Having IBD is not a risk factor for infection with the novel coronavirus (SARS-CoV2) or for developing the disease COVID-19
- Active inflammation MAY increase the risk of infection
- Patients should stay on their therapies in order to stay in remission
- Diarrhea is a common symptom in patients with COVID-19 and in the small number of people with IBD who have developed COVID-19
- Infusion centers with an appropriate screening protocol are OK
- Elective switching from IV to injection therapy is not recommended at this time
- The safety of home infusions is uncertain. (An infected home infusion nurse could be less safe than an experienced and secure infusion center.)
- It’s recommended to delay/postpone all non-essential endoscopic procedures
- Prednisone is not recommended, as this drug may increase risk of infection
- Tapering prednisone safely is generally advised, but especially if a patient has been exposed to the novel coronavirus (SARS-CoV2) or tests positive
General Guidelines for People With IBD
- Keep taking your medications. Many recommendations advise that people with IBD not stop their medications. Most IBD medications do not leave the body in the short-term and stopping medication could lead to a risk of an IBD flare-up. Talk to your physicians about your specific needs.†
- Risk of infection may not be increased. Receiving immunosuppressant medications does not increase the risk of contracting SARS-CoV2.‡
- Practice social distancing. Stay home as much as possible, especially avoiding large crowds in places with no ventilation, practice good hygiene and cleaning methods (see below), and follow other recommendations from your local public health officials.
- Use telehealth services. Ask your IBD physicians about conducting follow-up visits using telemedicine (such as over the phone or a video chat).
- Reschedule elective procedures. Consider postponing elective colonoscopy or other procedures.§
- Call ahead if you are sick. If you get sick with COVID-19—like symptoms (see articles below for more information) call your physicians to get instructions. If you experience difficulty breathing or shortness of breath, persistent pain or pressure in the chest, new confusion or the inability to arouse, or bluish lips or face, seek medical help immediately.||
- Contact the Crohn’s and Colitis Foundation’s IBD Help Center for questions, or see links to international Crohn’s and colitis patient advocacy groups below.
*Brenner EJ, Ungaro RC, Colombel JF, Kappelman MD. SECURE-IBD Database Public Data Update. covidibd.org. Accessed on 05/03/20.
†Crohn’s and Colitis Foundation. IBD patient guidance. CrohnsColitisFoundation.org. 12 March 2020.
‡Crohn’s and Colitis UK. Coronavirus (COVID-19) advice. CrohnsandColitis.org.uk. 13 March 2020.
§Mao R, Liang J, Shen J, et al. Implications of COVID-19 for patients with pre-existing digestive diseases. Lancet Gastroenterol Hepatol. Published online March 11, 2020. doi:10.1016/S2468-1253(20)30076-5
||Centers for Disease Control and Prevention. People at risk for serious illness from COVID-19. National Center for Immunization and Respiratory Diseases (NCIRD). 10 March 2020.
Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn’s disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn’s in order to share what she’s learned with the IBD community.Continue reading
Most people may not immediately make a connection between inflammatory bowel disease (IBD) and sleep, but the two are intertwined. IBD affects the entire body and that includes the ability to achieve restful sleep. Living with Crohn’s disease or ulcerative colitis can significantly affect the quality and quantity of a person’s sleep, even when the disease is well-controlled.
Quality, restorative sleep is important to long-term health. However, most people don’t get enough. In fact, the Centers for Disease Control and Prevention (CDC) consider the low quality and lack of restorative sleep among adults in the United States to be a public health epidemic. This makes sense when you think about it, because fatigue affects every aspect of a person’s life. A lack of sleep is associated with many common chronic conditions, including diabetes, high blood pressure, and depression.Continue reading
People who live with Crohn’s disease or ulcerative colitis have more to consider when it comes to the workplace. The cost of inflammatory bowel disease (IBD) means that a comprehensive insurance plan is a must, which may limit job choices. A flare-up or complication that results in absences can lead to poor performance reviews or difficulties with supervisors or co-workers. How can people with IBD cope? Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about missing work, being underinsured, and changing jobs while managing IBD.Continue reading
How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease.Continue reading
In December 2019 I went to Advances in IBD, which is a medical meeting that’s focused entirely on Crohn’s disease and ulcerative colitis. The understanding that IBD is more than a “bathroom disease” has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy.Continue reading
People who live with inflammatory bowel disease (IBD) often have questions about what should and shouldn’t be included in a diet plan. There’s not one single diet for every person with IBD, which presents challenges for patients. Diet is difficult to study because there are so many variables. While more data and research on diet is clearly needed, there are some general guidelines that health care professionals can offer their patients.Continue reading
With the turn of every new year, there’s a predictable pattern. People start making their New Year’s Resolutions and plan to begin their new activities (or stop the old ones) at the turn of the year on January 1st. Many of the resolutions center around losing weight, eating better, stopping smoking, or exercising more. However, are these the things that people with inflammatory bowel disease (IBD) are most concerned with? Better health for those that live with Crohn’s disease or ulcerative colitis might include resolutions that go beyond the focus of what healthy people consider at the start of a new year. I have some suggestions for those that live with IBD who are looking to make resolutions for themselves this year.Continue reading