Expert Q&A

A: This is a tough situation that requires close multidisciplinary care with your colorectal surgeon and gastroenterologist. The first step is to assess the degree of activity of the perianal fistulas as well as the intestinal disease (ie how much Crohn’s disease activity is going on in the small bowel and colon). This would involve getting an MRI pelvis to really examine the perianal area for fistula activity and abscess (sometimes with an MR enterography to look at the small bowel for activity) and a colonoscopy. If there is still quite a bit of activity despite diverting the stool, then the reality is that you may need to have a completion colectomy with permanent ileostomy especially if you have been on so many medications without benefit. If you haven’t been referred to a major IBD center for a consultation with an IBD specialist and IBD colorectal surgeon, we would strongly recommend it as this is a complex case. It is important to advocate for additional opinions – if there is consensus across the board, then that is helpful for decision making, but sometimes a fresh set of eyes can evaluate the situation and potentially identify another option. However, in truth, a surgery does seem like it may be the safest, most effective approach – remember, surgery is not a failure, it is an important treatment to help regain quality of life, control inflammation, and decrease risks of treatments that are not working. hide answer

A: The decision is usually based on extent, location and severity of your Crohn’s disease. If the majority of your colon is involved, then an ileostomy is typically performed due to issues related to inflammatory burden, colorectal cancer risk and blood supply/technical issues related to creating the ostomy. If a limited amount of your colon is involved (especially limited to the sigmoid colon or rectum, and the rest of your colon is normal as well as the small bowel, then a colostomy may be performed. This is a multidisciplinary decision based on careful review of your IBD history, medication use, body type, weight, and prior surgical histories. Make sure to consult with a colorectal surgeon who has expertise in IBD surgeries and, if there is uncertainty, sometimes it is helpful to get an additional opinion at a major IBD center. hide answer

A: The best way to protect yourself from infections is with prevention and optimization. First, you should make certain that your non-live vaccines are up to date – flu shot annually, pneumonia vaccine series, hepatitis A and B. As you are on immunosuppression, you cannot receive live vaccines like measles/mumps/rubella, yellow fever vaccine, chickenpox vaccine series. The second mode of prevention is through appropriate protective measures especially during cold/flu season. Hand hygiene and safe food handling practices are important. Being on immunosuppression doesn’t require extreme measures of caution during travel – but practical tips include bringing disinfecting wipes, hand sanitizers, etc to use as needed. You should wear a mask during travel or work if you have cold/flu symptoms as you don’t want to put others at risk for infection. Many people living with Crohn’s and Colitis work within the health care industry, If you work in the health care profession, wear appropriate face shields, eye protection as recommended based on a case by case basis. hide answer

A: Thrush is typically associated with a fungal infection that may be related to immunosuppression, particularly steroid use. I would discuss your symptoms with your health care provider as medications, dry mouth, or potentially related to IBD but other causes may be more common. hide answer

A: Steroids are associated with the greatest risks of infection, bone loss, and other complications related to ulcerative colitis, particularly with chronic and longstanding use. You are correct to want to taper off prednisone. IF you are steroid-dependent, then mesalamines (which include Asacol) are not likely to be the medications to keep you off steroids, especially with an adverse reaction as you have experienced. The injectable or infusion-based medications you are referring to are called biologics – these are protein-based medications that are used for people who are dependent on steroids or with moderate to severe disease. These agents can induce and maintain resmission (resolution of symptoms, ideally with healing of the colon) and provide the opportunity for people to taper off steroids. Examples include infliximab (Remicade, Renflexis, Inflectra), adalimumab (Humira, Cyltezo, Amjetiva), golimumab (Simponi), vedolizumab (Entyvio). You should discuss potential options with your IBD provider. hide answer