Going to the Emergency Room With IBD: How to Prepare

Over the 8 or so years that I've been sick with ulcerative colitis, I've ended up at the ER more than a few times. Once it was due to a bad reaction to 6-mercaptopurine, the medication I was put on the control my inflammation. Another time it was due to a blood clot caused by a UC flare. Other times, it has been due to symptoms that were caused my certain mineral and vitamin deficiencies.

Over time, I've come to know what to expect from the ER and what to bring with me for comfort, especially on the days when I've ended up in the ER overnight.

Long waits at the emergency room

It is important to know that most ERs triage their patients. That means that if a dire case comes in, they will likely be seen first, regardless of how long the other patients have been waiting. While it is important not to use the ER as a primary care doctor – both because of the cost and because others may need those services more – my personal recommendation is to go to the ER early, if you know what you're experiencing is severe or particularly abnormal.

I waited for 3 or 4 hours to get a scan of my leg when I had a suspected blood clot. Even though that blood clot could have been life-threatening, my case still took time due to a large number of sick patients also in the waiting room. Luckily, I arrived early in the afternoon, so by the time it was evening, I was brought back and could rest in a bed instead of sitting in an uncomfortable lobby chair all night.

Our immune systems with ulcerative colitis and Crohn's

Regardless of how early you come to the ER, it is likely you will have to do some waiting. One big note is many of us on biologics and steroids are immunocompromised, so if you can sit farther away from others while waiting in the ER, it may be beneficial, regardless of COVID.

It's recommended to try to stay away from contagious illnesses while you are immunocompromised, so giving yourself space from other people who are sick is useful.

What to bring to the emergency room

In terms of your comfort, remember that ERs can be cold, so I always try to wear long pants, like sweatpants, and bring a jacket. Once, I wore shorts, and was doubly uncomfortable the whole time! A blanket couldn't hurt either. I also bring some snacks and water, although I do recommend asking if they anticipate you'll have any testing that requires you to fast. That way, you don’t have to wait longer for tests because you ate a cracker.

In terms of entertainment, many ERs often do have a TV, but you may want to bring some music, a podcast, or a book. Even something like knitting could be a good idea, as long as your entertainment of choice helps with your stress. You should also bring your insurance card, if applicable, as you will likely be asked to present it at some point.

What to do when you finally see a doctor

Now, once you speak to a doctor, you'll be asked lots of questions about your medical history, the medications you take, and your symptoms. As you would at a specialist's office, be sure to calmly tell your story, beginning to end. Though the ER is busy, it is important to give the ER doctor all the information you have. (Before you are in the ER, you may want to take some notes on what symptoms you're having, how severe they are, and when they started.)

After that, you’ll be told what kinds of testing they may do. In my experience, blood tests and urine tests are common to start with, and x-rays, CT scans, and ultrasounds may be used too.

That time when you are waiting to hear a diagnosis can be really stressful. For this reason, I usually ask a loved one to come with me, especially to distract me. My partner, who is usually there with me, also asks questions of the doctor and helps me remember information. I definitely recommend bringing someone with you, if possible.

Being prepared to be admitted to the hospital

There is always a possibility that you will be admitted to the hospital after an ER visit. For this reason, I recommend bringing any medications you take and any items like glasses or contact lenses. The hospital can provide some items, like mouthwash, but it is useful to have some of the very individualized things you know you need.

While I hope not to go to the ER too many more times, I have accepted that it may be a big part of my life as someone who is chronically ill. The more times I go, the more of a system I have created, which allows me to feel in control and ready to focus on my health, instead of the logistics of the ER.