Why IBD Patients Are Petrified of the ER
I was at an event where a friend of mine who suffers from Crohn's disease was having issues and really did belong inside of the hospital.
He was a plane ride away from home (and of course, his medical team) and understandably scared. Many people tried to push him to go to the local emergency room but he resisted. Others even gave him the names of better-ranked hospitals in the area that were more of a drive but would likely offer him better care. He still did not want to go.
I was speaking to someone who was so worried about our friend and couldn't believe he was resisting medical attention in the state he was in. She told me, "If I was him, I would just go to the ER, get pain medication and sleep."
That comment right there is how most people think of the emergency room or the hospital.
The emergency room is scary for someone with IBD
As a person who suffers from inflammatory bowel disease, I can tell you that the emergency room is one of the scariest places to be. There are so many reasons for this that I want to briefly go into.
The first is because of the complex nature of inflammatory bowel disease, most emergency room doctors aren't very helpful. And even though many do understand IBD, they do not understand your IBD. All of our stories and journeys with this illness are so different.
For example, the medications we respond to, the type and amount of surgeries we have had, and the extraintestinal manifestations of the disease that impact our individual bodies are just some of the things that need to be taken into account when a doctor is caring for us. We also know our bodies better than anyone which I think is a hard concept for a random doctor to grasp.
Going to the ER with an invisible illness
Secondly, going to the emergency room with any kind of invisible illness is frightening. There are some doctors who refuse pain medication because they cannot see anything wrong with you. Meanwhile, your insides are destroying you!
So now you not only are dealing with the physical while in a very vulnerable position but you now have to prove to someone that you are legitimately in need of medical assistance and proper relief.
Also, many IBD patients have been poked and prodded so many times that they have the tiniest veins. Or veins that may look nice and juicy but roll. Those patients who have been on prednisone are also especially likely to have smaller veins.
Only people with Crohn's or UC really get it
The 1 decent experience I had in the ER was when I had a nurse with Crohn's disease. It was taking a tremendous amount of sticks to get an IV in me so he went and grabbed a sonogram machine. He even made sure I had all of the pain medications I needed since he had been in a similar situation and knew how it felt.
It was a breath of fresh air to not have to dumb myself down in order to not seem like I knew too much. (Enter red flag behavior.)
The high cost of emergency care
The emergency room also costs a ton of money. I know people shouldn't be thinking about that when it comes to their health but chronic illness is expensive. It is difficult not to weigh the pros and cons of going to the emergency room when you are already in a pile of medical debt that is stressing you out.
Lastly, being alone while in a crisis is hard enough but when your disease impacts your stomach (AKA the center of your body,) it makes it that much more challenging. People are in such a vulnerable place and oftentimes it is difficult for people to let medical professionals know the complete picture of what is going on. Being overwhelmed can often make you sound incoherent or babbly which is the last thing doctors and nurses are looking for when trying to care for you.
I wish there were IBD-specific emergency rooms. I know that is a pipe dream but I just want most people in the medical field, as well as the general public, to really understand how difficult it is to bring yourself to the ER. It takes a tremendous amount of courage to admit you need help. Especially when you can't predict what you will be walking into when you go to the emergency room.
How open are you about being diagnosed with IBD?