Nearly 19 years of living with Crohn’s disease and this past week I experienced an MRE (Magnetic Resonance Enterography) scan for the second time. I felt nervous, overwhelmed, and scared leading up to the test. The only other time I had an MRE was in July 2015 while hospitalized with a bowel obstruction. The scan was used to determine whether I needed surgery. I was out of it and have little to no recollection of the experience. The results from my MRE in 2015 informed my GI team back then that I needed 18 inches of my intestine removed. Fast forward to the present day, and after being in deep remission since that surgery, I started to experience a worrisome uptick in symptoms beginning in early March 2024.

It took a month to get in for the MRE, but I knew in my heart-of-hearts I needed to get answers. Leading up to the scan, I crowdsourced questions on Instagram and received an outpouring of support that helped make the experience nearly seamless for me. This week on Lights, Camera, Crohn’s I provide a behind-the scenes look at what it’s like to get an MRE and share firsthand advice from a patient advocate who is truly an “MRE pro”. Due to the amount of information, we’re breaking this bad boy up into two parts.

Walking you through the process

I had to arrive at the medical center at 10:15 am and was advised not to eat or drink four hours prior. I set my alarm for 6 a.m. and drank some water. When it was time to get in the car with my husband to head to my MRE, I took a Zofran to help prevent nausea from drinking all the contrast. After arriving at the imaging center, I was brought back to a room where I answered health questions and changed into a hospital gown and pants. I wore a sports bra without metal but was told I couldn’t wear it due to some synthetic fabrics. Then, I received my IV. The nurse took one look at my arms and grabbed a vein finder machine. For those who don’t know, this looks like a wand and puts a light over your arm to highlight veins so the nurse can pick the best option. My husband held the wand for her as she did my IV and she got it on the first try. That was a big win for me.

Once the IV was in, an MRI tech brought me three bottles of contrast (450 ml) to drink, about 46 ounces of fluids. I was told I had 20 minutes for each bottle and hopefully that I would have all three bottles down in an hour. Worst case the tech said I needed two. She told me not to chug too fast as that might make me nauseous. I took it with a straw and scrolled on my phone to distract myself. The contrast tasted like a super flat Sprite with a dull citrus taste. I’ve heard many people must do this in a public waiting room, I was grateful to be in a private room with my husband.

Due to my claustrophobia and anxiety about the test, my GI prescribed pre-meds for me that I picked up from Walgreens prior to the day of my test. He prescribed me four, 0.25 mg Xanax. I had never taken Xanax and did not know how it would make me feel. I called the Radiology center the day before the scan to ask whether I’d be able to get anything in my IV if I was too anxious, and they said if you’re outpatient you can only take anxiety meds orally.

Fellow IBD patients advised I take one Xanax the night before to have an idea of how it made me feel. I followed that advice and I’m so glad I did! Knowing how I responded took a bit of the stress off my shoulders. I took my first Xanax the moment I started the contrast (1 hour prior to the MRE) and then 30 minutes later I took .50 mg (2 pills) because I didn’t feel calm enough. For me, that was the perfect dosage. I felt completely coherent but chill and relaxed.

When I walked into the MRI room I asked if I could have headphones and listen to music. The techs asked me what kind of music I wanted; I said something upbeat like Taylor Swift. Then, I asked for a washcloth to put over my eyes. The scan took 45 minutes, I didn’t have one moment of fear or anxiety. There are lots of loud banging sounds and you hear the tech’s voice instruct you when to hold your breath and when to breathe. I felt very at ease and at the end started to doze off!

Since I had been NPO all day and it was 1 p.m. I was given a bag of pretzels and a bottled water after I changed back into my clothes. My husband had to leave during the scan to pick up our younger two from preschool, but the timing was perfect, and he swung back and grabbed me, so I did not have to drive after the scan. I felt tired afterwards.

After about 3 hours I started to get excruciating abdominal pain that I was not expecting. I’ve since been told by fellow patients that this is a result of the contrast and that it’s not unusual. I was very uncomfortable for about four hours. I spent a long time in the bathroom and on the couch with the heating pad. By about 9 p.m. I felt back to normal.

Guidance from a Veteran IBD Warrior and MRE Pro

Rocio Castrillon has lived with Crohn’s disease for more than 20 years and underwent countless MRIs specific to her IBD, but also for a multitude of other reasons including—Brain, Face/Sinus, Shoulder, Cervical Spine, Lumbar Spine, Legs, and Knee. She’s a true patient advocate in every sense of the word and someone I admire greatly. Through my recent experience, Rocio helped me immensely and even texted me the morning of my scan on her own accord, throughout my test as I drank the contrast, and after when I was stuck in the bathroom in pain. This is a true example of someone who goes out of their way behind the scenes to be a source of comfort and support for others. We have never met in person (yet!) and there’s this level of friendship between us.

“While MREs are specifically used for IBD patients, due to the contrast ingested, as well as injected, they are more complex than the traditional MRI and tend to be lengthier in time. Due to my anxiety and claustrophobia, I’ve had to utilize coping techniques to undergo MRIs and although they are still challenging, it’s yet another aspect of my IBD I’ve overcome. While these recommendations are primarily for IBD patients, many can be considered for a traditional MRI,” explained Rocio.

Check out Rocio’s step-by-step advice as your gear up for your next MRE:

PLANNING

• At the time that an MRE is ordered by your gastroenterologist, there are a few considerations to keep in mind. MREs will require prior authorization which may take weeks. Fortunately, this time will allow you to explore options for locations.
  • In most cases, the MRE is ordered to be performed at the imaging facility that is affiliated with your provider, but you do not have to do your MRE there.
  • Oftentimes, there are private imaging centers, not affiliated with an academic institution, which can be more cost-effective.
• MRI machines are now available in a wider bore design to help reduce anxiety and are recommended for claustrophobic patients. The feeling of a more “open” machine is beneficial. But to locate one, you must call around to determine if your recommended imaging facility has them and/or if you need to seek out an external facility.
• At the time of your gastroenterologist appt., and if you have anxiety and/or claustrophobia, Rocio strongly suggests requesting a prescription for a sedative used for panic disorders, such as: Ativan, Klonopin or Xanax, which are short-to-intermediate in duration. While you will only need a prescription for one pill, keep in mind that there are many states that now require identification to pick up controlled substances.
  • Please note that if you do take a sedative, you will be required to have a driver to accompany you, as you will not be allowed to drive yourself.
• Also, at the time of your gastroenterologist appt., and if you have nausea, Rocio strongly suggests requesting a prescription for Zofran to be utilized prophylactically.
• Once the prior authorization for your MRE is approved, you will be able to schedule. Request an appt. time that works with your personal eating schedule. Because MREs require fasting, as well as contrast ingestion, patients may find it challenging to drink contrast early in the morning. Rocio tends to have more nausea in the mornings, so she prefers to schedule mid-day scans. While this does mean a longer fasting time, it also allows her to drink more contrast.

DAY BEFORE

• Rocio eats a light diet the day before the MRE to prevent nausea as much as possible. While this is not necessary, she’s found it helps with nausea and vomiting.
• HYDRATE…before AND after your MRE. While the technicians will explain the need to hydrate following an MRE, hydrating beforehand will allow for easy access to veins for the IV needed to inject the contrast. Hydrating after is crucial to eliminate the contrast from your body.

DAY OF MRE

• Before leaving home, be sure to remove all jewelry and/or metal from your body. Because an MRI machine uses a magnetic field, you cannot have any metal on you. Women will be asked to remove their undergarments which have metal.
  • Additionally, if you continue masking in medical facilities, your mask will be switched out for a mask without metal that the technician will provide you.
• An hour prior to the scheduled arrival time, take the prescription Zofran so it has time to kick in before needing to begin the contrast. It will help prevent/reduce the level of nausea and/or vomiting from the contrast.
• Upon arrival at the imaging facility, you can take the sedative, as this will allow it time to kick in before you begin the imaging. Because there will be a window of time when you need to consume the contrast and when the imaging begins, this typically works well.
• Contrast! While many academic institutions have shifted to a new contrast, Breeza,  which is lemon-lime flavored, it is not always available to patients. In the past, Rocio has consumed other contrasts. She wholeheartedly agrees that Breeza is certainly better “tasting” than those in the past. But in full transparency, it still is contrast…haha.
• For all her MREs, Rocio has been provided with three bottles of Breeza. Unfortunately, she cannot consume all of them, and at best, she’s drank a maximum of one bottle. While this is certainly not ideal from an imaging perspective, and is NOT medical advice, she’s been fortunate to have been “allowed” to perform the test with just one contrast bottle. The imaging that has resulted has sufficed for the radiologist to review and for her gastroenterologist to see results.
• Insider Tip: While this may not be available to all patients at all facilities, Rocio always requests to sit near a bathroom and/or near a trash can if she is in the main waiting area. She says she already has enough anxiety about the MRE, and having people watch her drink contrast tends to make her more anxious. Note this is NOT always readily available, and you will have to adapt to what is available at your facility.

MRE START

• Upon finishing the contrast, the technician will take you back to the MRI machine where you will be laid flat. If you have anxiety and/or claustrophobia, be sure to alert the technician as they can make you more comfortable in a few ways.
• Typically, a technician will ask for your music preference as they’re able to control the music that you hear via headphones (provided to you)
  • Rocio prefers relaxation/spa music as it helps to keep her calm.
• Depending on your facility, there are mirrors that can be placed to allow you to “see” the surroundings and not actually have a view of the MRI tube. It enables patients to have the “illusion” that they can see the outside – either images displayed on the ceiling, or the room where the technician is sitting. This has been a lifesaver for her!
• During the MRE, the technician will explain everything to the patient through a speaker that you can hear in the machine. You will also be able to respond to the technician and they can always hear you. You will also be provided with an emergency panic button to press, should you need to come out of the machine for any reason.
• During the MRE, the technician will advise when they are starting the contrast through your IV. You should not feel anything except a quick sensation of nausea that passes immediately. This doesn’t happen to everyone, but it’s common.
• Rocio says for some patients, like herself, who have been unable to consume all the contrast or who have slow motility, sometimes an injection called Glucagon will be utilized. This improves the quality of the images, but it does cause side effects. You will be instructed to ease into resuming eating and avoid any high protein foods due to slow digestion.
• At the conclusion of the exam, you will be instructed to hydrate and begin eating slowly. Much like post-colonoscopy, Rocio recommends light meals for a few hours.
• Due to Rocio’s extreme nausea and vomiting, she typically does not tolerate the contrast after the exam and tends to get sick shortly after. This is NOT the norm, but she  recommends having an emesis bag in your car. As a reminder, if you have taken a sedative, you will not be allowed to drive yourself.

Considerations regarding contrast

While the actual scan experience was more pleasant than I had anticipated, about 3 hours after getting home I started getting terrible stabbing pains in my abdomen and had to run to the bathroom multiple times. At one point my husband came upstairs to check on me because I had been in the bathroom for so long. I was not aware or told that the contrast could cause this type of response. When sharing this on Instagram and after talking with Rocio, I learned how common this is within our community, especially for those who are symptomatic.

An IBD mom whose daughter has Crohn’s shared helpful insight for those who are on special diets or have difficulty tolerating contrast drinks.

Kristen tells me for MRE’s her daughter mixes Miralax in a specific amount of water that the MRI tech recommends, if she had to guess 40-60 oz over an hour. She says this helps prevent stomach cramping and uptick in symptoms. Kristen says some patients on the Specific Carbohydrate Diet (SCD) also drink pineapple juice (Lakewood brand or another organic fresh pressed brand) with Miralax.

“I found through this experience with my daughter that there was not much knowledge about how what you put in your body in the way of contrast, may affect inflamed intestines. Large amounts of sugar alcohol in contrast causes my daughter terrible pains for hours afterwards. Everyone is obviously different, and this disease is unique to each person, but I did a lot of research and we have found that the combo of a biologic plus SCD diet has really helped my daughter maintain remission, for now anyway.”

Kristen’s daughter had bowel resection surgery to remove strictures in her terminal ileum 7 years ago when she was 13 years old. She’s added some food back, but she’s strict with eating only whole foods and great about taking her medication.

Tomorrow on Lights, Camera, Crohn’s hear input and helpful MRE advice from 80 IBD warriors along with how to cope with the mental health aspect of going into a test and not knowing how the results are going to impact your life. As I was working on this article, I found out from my IBD nurse that my MRE results were within normal limits and that there is no evidence of active inflammatory bowel disease. While I’m thrilled and grateful to receive this news, it’s always perplexing when you’re more symptomatic than normal and your labs and scans don’t reflect a reason why.