Sarah Simkin, of Carlsbad, California, is no stranger to the symptoms of Crohn’s disease. As someone who’s lived with the condition for over 20 years, she’s all too familiar with the abdominal pain, aches, and fatigue that can accompany a flare.
So when Simkin experienced a bout of pain in March 2012 that left her curled up in a fetal position for hours, she knew something was seriously wrong. “It was difficult for me to stand up straight, walk, or really move at all,” she says.
Her instincts were right: After going to the hospital, she discovered that she had an intestinal blockage, which left her hospitalized for 10 days.
Simkin, the founder of My Mindful Table, a food and recipe blog, now recognizes the severity of that pain and knows that she should go to the emergency room right away. (An intestinal blockage may require surgery, according to the Crohn’s & Colitis Foundation.)
Knowing how to spot the differences between a “normal” Crohn’s flare and a potential emergency can be lifesaving.
Recognizing Crohn’s Emergencies
If you have Crohn’s disease, one of the most important things you can do is establish an understanding of what’s normal for you, says Nirupama Bonthala, MD, a physician and researcher at the Inflammatory Bowel Disease Center at Cedars-Sinai in Los Angeles. The symptoms of Crohn’s are very individualized and can range from frequent bowel movements to skin rashes.
Not all changes in symptoms are cause for alarm, though. “Everybody with Crohn’s, even when it’s well controlled and in remission, is allowed to have some bad days here and there,” Dr. Bonthala explains. (If symptoms such as frequent bowel movements and fatigue persist for weeks, talk to your gastroenterologist about it. If your symptoms are more severe and you aren’t able to stay hydrated, you should go to the hospital.)
Here are six situations that can’t wait for a doctor’s appointment and require an immediate visit to the ER.
Bowel Obstruction
When the intestinal wall becomes scarred or inflamed, the intestine can narrow and cause a stricture or bowel obstruction. According to Bonthala, this usually results in sudden, severe pain. Other symptoms include an inability to pass gas or keep any food or water down; it’s often accompanied by nausea and vomiting. If you’re experiencing these symptoms, you need medical attention immediately. Treatment often involves inserting a tube down your nose to decompress the obstruction.
Fistula
Fistulas are abnormal connections that form between two organs. In the case of Crohn’s, Bonthala explains, you can get a fistula that connects either two parts of your bowel or your rectal area to your vaginal area. Bowel-to-bowel fistulas have nonspecific symptoms, including abdominal pain, diarrhea, and nausea, so it’s important to monitor any increase in those symptoms. Fecal matter or blood in your urine and cloudy urine are signs of a rectourethral fistula. Treatment involves draining the fistula and, depending on the severity, possible surgery to remove it.
Perirectal Abscess
If a rectourethral fistula becomes infected, you can develop an abscess, or a pocket of pus. An abscess starts as a small bump that becomes enlarged. It can grow to the size of a golf ball — or larger — and feel like it’s going to burst. If you suspect you are developing an abscess in your rectal area, get medical care immediately. Treatment includes surgery to drain the abscess and antibiotics.
Perforated Bowel
If inflammation in the bowel gets severe enough, it can weaken the wall of the bowel and create a hole. This causes the contents of the bowel to leak into the abdomen and can result in a serious infection. Symptoms of a perforated bowel include severe abdominal pain, vomiting, fever, and chills.
Sepsis
Being on medications for Crohn’s that suppress the immune system can make you more susceptible to infections. Sometimes, an infection that goes unchecked can develop into sepsis, a serious blood infection. (Sepsis can also be a complication from fistulas and perforated bowels.) If you’re experiencing a sudden high fever, night sweats, pain, and general fatigue, see a doctor immediately.
Uncontrolled Flare
A Crohn’s flare on its own can sometimes warrant immediate medical treatment, Bonthala says. In these cases, it’s important to monitor the severity and duration of your symptoms. If your bowel movements are suddenly more frequent, you can’t keep up with your hydration, you’re experiencing significant pain, or your medication stops working, it’s time to go to the hospital and get the flare under control. There, they can rule out any infections and administer medication or hydration by IV.
Prepare for Your ER Visit
Getting emergency treatment for Crohn’s-related illness means you have to be an informed patient, especially if you’re in an ER that may not see a lot people who have Crohn’s. “Be very clear about what symptoms you have and what medicines you’re on,” Bonthala says. “Write them down and tell the doctor what brought you to the ER.” If you have had similar issues in the past, tell them what helped.
Simkin makes a point of going to the ER that is associated with her gastroenterologist’s practice, so they already have access to her medical records. But if your usual hospital isn’t available, be sure to ask for a thorough abdominal exam to check for any bloating or tenderness, blood tests to check for inflammatory markers, a stool test to check for infections that can mimic a flare, and a CT (computed tomography) scan to check for blockages.
You can also keep your medical info and doctor’s contact information on you in case of an emergency, and download screenshots of your colonoscopy results and CT and MRI scans in case you can’t get on the hospital’s WiFi.
Preparing mentally is something people often don’t think of but has been critical to Simkin’s care. “The anxiety can get away from you,” she says. “Download something soothing — guided meditation, a podcast, whatever soothes you. It’ll help you breathe through the pain and lock out a lot of the noises that are going on during that hard time.”
