Navigating the ER as an IBD patient
By Sara - Gall Ambassador
The emergency department of the hospital can be an intimidating and scary event when you live with Inflammatory Bowel Disease. If you find yourself needing hospital intervention during your IBD journey, here are some ideas from a Gali Health Ambassador and ulcerative colitis veteran that can make the ER a more smooth-running experience.
1. Before walking into the ER, or calling an ambulance, recognize that you live with an invisible illness. Most symptoms of Crohn’s disease and ulcerative colitis are not visible to the naked eye. Thus, it is not an uncommon phenomenon for IBD patients to not feel heard or feel medically supported when they go to the ER because “you don’t look that sick.”
2. Advocate and speak up for your needs. You are at the ER because you need medical interventions, and need them urgently. It can be challenging to nearly impossible to receive pain medicine intervention in the ER after the opioid crisis occurred in the United States. Opioid crisis + invisible illness = very challenging scenario for younger IBD patients to receive narcotic pain relief. However, there are other non-narcotic pain relievers that the ER can provide you with to make you more comfortable. Fight for what you need!
3. If possible, bring a support person with you to the ER who is familiar with your disease. When severe pain from IBD occurs, it can be challenging to effectively speak your needs with medical personnel. Having someone with you can alleviate the stress of communicating with nurses and other medical staff during this time.
4. Inform the emergency department staff of all medications you are taking. IBD is largely treated with immunosuppressive therapies, and can potentially have reactions to other medications, thus it is imperative the hospital is aware of all your current medications, doses, and dates of last infusions/injections.
5. Be able to articulate your current symptoms. When I’ve gone to the ER before, I informed the triage nurse that I have a diagnosis of “ulcerative colitis.” The nurse informed me that she did not want to know my diagnosis, but rather the symptoms I was experiencing. I’m not sure if this is standard protocol at every emergency department, but being able to effectively describe the symptoms you are experiencing is critical, not just stating “I have Crohn’s disease and am in pain.”
6. Bring entertainment to keep your mind occupied. The emergency department generally has long wait times, and it can be hours before you are seen. Watching Netflix/Hulu or reading a book is a good way to pass time and keep your mind off of IBD-related pain.
7. Protect yourself if you’re on immunosuppressants. If you are on immune-suppressing medication, wear a facemask before entering the ER to avoid exposure to other potential illnesses/infections.
8. After your ER visit, make sure to follow up with your GI and/or primary care physician. It is imperative that your medical team coordinates your care together and is aware that you needed hospital intervention to control your IBD.
I hope these tips help you! 💜
For more information and tips on living with inflammatory bowel disease from the medical and patient communities, download the Gali friend for IBD mobile app and she will create a personalized feed of articles just for you!