Traveling with IBD: Real Talk, Hard Truths, and the Courage to Keep Exploring

Traveling with inflammatory bowel disease (IBD) is rarely as simple as packing a suitcase and showing up. It’s logistics, emotions, planning, and flexibility. It takes a bit of hypervigilance. This layered on top of a disease that doesn’t take vacation days. But it is possible. And for many of us, it becomes one of the most empowering reminders that life with IBD can still be adventurous, and rich with new experiences.

This week on Lights, Camera, Crohn’s you’ll hear from two incredible IBD advocates, Kelly Dwyer and Rachel Verbanac. They both open up about their diagnoses, their anxieties, their coping strategies, and their go-to travel essentials. Their honesty and wisdom offer a roadmap for anyone who wants to explore the world without letting IBD call all the shots.

Meet Kelly: 21 Years of Symptoms, 7 Years Diagnosed

Kelly may have been diagnosed with Crohn’s disease in 2018, but she’d been living with severe perianal fistulizing ileal Crohn’s since the early 2000s.

“Before diagnosis, I avoided significant travel whenever possible because I was so ill. And when I did travel, I tried so hard to plan for every single scenario that it became stressful for me and everyone around me.”

Now in deep remission thanks to medication, Kelly still plans intentionally, but the difference is that the planning empowers her instead of holding her back.

She structures trips around:

  • Her injection schedule
  • The time of day she flies or drives
  • What foods she eats before travel
  • How to pace her energy
  • And what she needs to stay healthy while surrounded by crowds

“I wear a mask, use sanitizer constantly, wash my hands as much as I can… it all helps me feel like I’m doing what I can to set myself up for success.”

Kelly on Travel Anxiety: The Trauma Stays with You

Despite years of remission, Kelly still carries fear rooted in lived experience.

“I constantly worry about not making it to a bathroom. Even though it has not happened in years, that trauma stays with you.”

Kelly also experiences nausea, anxiety and a whole lot of gas and burbling guts when she travels.

“Finding the right medication cocktail that keeps things calm and in order in my guts (and brain!) took a lot of trial and error, but was worth it for me to find a combination to give me confidence that I’ll feel like I’ve done everything I can to get the trip off on the right foot. I would recommend you ask your doctor or GI about Zofran, anti-anxiety medications in small doses, Gas-x, antacids, and other OTC medications that might help you to make sure they’re safe for you to take.”

She’s built a system that helps her feel confident when she’s traveling:

  • A “Can’t Wait” restroom access card
  • Depends or heavy-duty panty liners on days she’s unsure
  • Change of clothes and wipes in her purse, not her carry-on
  • Imodium and emergency meds ready to go
  • Small meals before and during travel days
  • Medication for nausea, anxiety, gas, and gut discomfort

“I had to learn to relax into the chaos of travel and not panic when plans change. Travel is unpredictable—but so is Crohn’s.”

The Power of Protection: Insurance (Both Emotional and Literal)

Kelly is adamant that travel insurance is non-negotiable.

“I have used travel insurance many times for flare-related cancellations. It can be heartbreaking to miss something important, but it’s not your fault. This is your reality, and you’re doing your best.”

She also communicates openly with travel companions, so expectations are clear and compassionate from the start.

“Find as much peace as possible. Asking for everyone’s understanding and compassion, is so important. I remind myself that it’s not my fault that I am unwell. It’s not anything I did to cause the flare. This is simply my reality, and I am trying my very best, even if it doesn’t always work out the way I’d hoped.”

Kelly’s Must-Have Travel Kit

Here’s what she never leaves home without:

Kelly’s biggest piece of advice?

“Treat yourself with compassion, always. Build in extra time everywhere. Your comfort is worth it. Having a few extra hours at the airport to sit and read a magazine is much preferable to rushing through security lines and not being able to use the bathroom before getting on the plane because you’re late.”

Meet Rachel: A Travel-Lover Who Refused to Stop Exploring

Rachel was diagnosed with Crohn’s disease in 2021, right as she was going back to nursing school. Before that, she spent months living a nomadic lifestyle in New Zealand and expected to spend her twenties exploring the world. Her diagnosis meant rethinking what travel could look like. Requiring infusions changed everything.

“Hiking the Appalachian Trail used to be a dream, but with the need for insurance, pharmacy authorizations, infusion clinics, and access to university health systems… that lifestyle just wasn’t realistic anymore.”

But Rachel didn’t stop traveling. She adapted.

How Rachel Travels Now

Rachel describes herself as someone who “packs her anxieties,” but in a productive way.

Her prep includes:

  • Bringing a med kit stocked with small doses of essential meds
  • Monitoring hydration closely on travel days
  • Planning meals and bowel habits ahead of time
  • Understanding bathroom access in each country
  • Carrying small local currency bills for paid restrooms
  • Bringing a letter from her provider outlining her diagnosis and meds

“After many international trips, I’ve proven to myself that how I feel at home reflects how I feel on the road.”

Rachel also buys comprehensive travel insurance that covers pre-existing conditions, often from TinLeg, and encourages others to read the fine print carefully, especially regarding upfront payment rules.

“I feel much more secure knowing all medical bills will be paid for should I need anything abroad. Beyond health insurance, I have used the insurance for trip interruption and costs of delays. I also have my provider write me a letter stating my disease, common side effects, and my current medications. This letter can be useful when seeking care at a new clinic or if TSA should ever give you a difficult time (I have never experienced this). I like having the physical letter in the med kit.”

Bathroom Access: A Cultural Learning Curve

When traveling with others, Rachel gives them a heads up that access to bathrooms is a priority for her. Especially when traveling in Europe.

“Europe often requires a purchase to use a restroom. You cannot just run into a McDonald’s.”

Her strategy?

And she always tried to keep everything in perspective, even when the unexpected happens.

“Accidents are embarrassing, but you will most likely never see these people again. It is okay. You are okay.”

Travel Anxiety: You’re Not Alone

Rachel acknowledges the fears that come with IBD, but her message is clear:

Do not let IBD keep you from seeing the world.
Start small and your confidence will grow.

She now travels to Mexico annually and cannot imagine winters without it.

Nurse-Approved Safety Tips from Rachel

Some of her favorite reminders:

  • Even healthy travelers get GI bugs—be cautious with food and water. Taking general precautions like only drinking bottled water in areas where the water might not be safe to drink, sanitizing your hands often, and avoiding touching your eyes and mouth are still the best ways to prevent infections.
  • Avoid buffet sushi
  • Choose made-to-order stations
  • Read resort and food reviews. She checks out Google reviews, TripAdvisor, and Hotels.com to see what people have to say before she books a trip.
  • Wear an N95 on flights to avoid illness and see if your travel companions will do the same to help keep germs at bay.
  • Advocate for yourself with travel companions
  • Read Google reviews quickly if you’re unsure of a restaurant, locals and travelers will share if they got sick eating there. Look for highly frequented places.

As a nurse, Rachel has these words of wisdom for our community, “Don’t let IBD keep you from seeing places and experiencing new cultures. Often as patients we have anxiety and unknown destinations can seem overwhelming and scary. Start small and your confidence will grow, promise.”

Rachel’s Travel Med Kit

She carries:

  • Doctor’s letter
  • Hand sanitizer
  • Tylenol
  • Imodium
  • Pepto
  • Tums
  • Fiber
  • Gas-X
  • Benadryl
  • Dramamine (also helpful for intense nausea)
  • Zofran
  • Liquid I.V.
  • Band-Aids that are a few sizes
  • Contact solution or small vial of artificial tears (I wear contact lenses) 
  • A few doses of Dayquil and Zyrtec—when changing the container medication comes in, be sure to write the dose (mg or ml or the number of pills) and how often you take it.
  • A tube of triple antibiotic ointment and hydrocortisone ointment (for scrapes and bug bites)

Final Thoughts: You Deserve to Experience the World

Traveling with IBD takes more planning, more flexibility, and more courage than most people will ever understand. But as Kelly and Rachel show, it’s possible and it can even become empowering.

As someone who was diagnosed with Crohn’s more than 20 years ago traveling can still make me feel a bit uneasy. I always keep pain medication, Zofran, and Dramamine in my carry on. If you have to pack your biologic medication, keep that on you as well. It’s important to check how long your injection can be out of the fridge. Nowadays, Humira for example, can be unrefrigerated for up to 14 days. If you have to do your injection while away from home, make sure to have alcohol swabs and an ice pack (if you are used to using one).

I never drink caffeine prior to flights or long road trips, and I eat very light until I am at my destination. I try to dress as comfortably as possible, and do not restrict my belly in any way. The moment I get to my hotel room I take off my travel clothes and shower. If you are traveling and feeling symptomatic, it can be helpful to alert your care team at home and also do research beforehand about local hospitals so you have a game plan in place should you be facing an acute flare that may require a trip to the emergency room.

Whether you are taking a weekend road trip or boarding a long-haul flight, remember:

You’re allowed to take up space.
You’re allowed to prioritize your needs.
You’re allowed to choose comfort over speed.
You’re allowed to protect your energy.

And most importantly:

You deserve to make memories that reach far beyond the walls of your disease.

Additional resources

Traveling with IBD | Crohn’s & Colitis Foundation

Crohn’s Disease: Plan Ahead to Make Travel Easier

Travel Tips When You Have Ulcerative Colitis

Tips for Long Travel Days When You Have Crohn’s Disease

Snacks for Crohn’s Disease: 10 Easy Grab-and-Go Ideas

I’m a Frequent Traveler With Crohn’s Disease—Here Are My Packing List Non-Negotiables | Condé Nast Traveler

21 Tips for Traveling with IBD – Romanwell

Navigating NG Tubes: Practical Tips and Emotional Support for Patients and Caregivers

When you live with Inflammatory Bowel disease, there’s no telling if or when you’re going to need an NG tube (nasogastric tube) to help stabilize your symptoms, deliver nutrition, and help your body heal. In my 20-plus years living with Crohn’s disease, and despite many hospitalizations for bowel obstructions, I have never needed one (yet). Recently, a fellow IBD mama on Instagram shared about getting one as she’s hospitalized right now (with a new/additional diagnosis-Gastroparesis), and her experience inspired this article.

This week on Lights, Camera, Crohn’s, a guide that breaks down what to expect, what helps, and how we can best cope from fellow patients and caregivers who have lived through it. Whether you are facing your first tube placement or supporting someone who is, the fear of the unknown can often feel bigger than the procedure itself.

Understanding the Process (and Why It’s So Intense)

NG tube placement can feel overwhelming because it involves an extremely sensitive area: your nose, throat, and gag reflex. It is quick, but not exactly pleasant. Knowing what is coming can dramatically reduce anxiety.

An NG tube is typically used for:

  • Bowel rest and decompression during IBD flares
  • Relieving bowel obstructions
  • Nutrition support
  • Medication delivery

And while the experience varies widely, preparation and honest communication with your care team make a huge difference.

Before Placement: Preparing Your Mind and Body

  • Ask for numbing options: Most hospitals can use lidocaine spray or gel in your nostril to make the initial insertion more tolerable. It is worth requesting.
  • Practice slow breathing: Focusing on deep, steady inhales through your nose helps decrease the gag reflex and keeps your body relaxed.
  • Sit upright with your chin slightly tucked: This position straightens the path the tube travels and can make the process smoother.
  • Have emotional support: Whether it is a partner, parent, friend, or even someone on speakerphone, having a familiar voice can ease anxiety.

During Placement: Strategies That Actually Help

  • Swallow as the tube advances: If the nurse allows, sipping water and swallowing as the tube moves downward helps guide it into the esophagus rather than the airway.
  • Anchor your eyes on one spot: A visual point of focus reduces the instinct to pull back or panic.
  • Choose a mantra: Something like “This is temporary” or “Every swallow gets me closer” can center your mind.
  • Ask your nurse to narrate the steps: Knowing what is happening and when it will be over prevents surprises and makes the process feel more controlled.

What Patients and Caregivers Have to Say

Hindy: “I would say to request the thinnest tube possible. It is really awful.”

Ashley: “It’s a horrible experience. I’m glad I didn’t know what to expect before getting one placed, because I don’t think I would’ve been able to handle it. I don’t think there’s anything that could have prepared me for it.”

Amy has IBD and her four-month-old daughter does not, but she has had an NG tube for two months, due to issues with strength, stamina, and desire to eat after being born prematurely.

“She was diagnosed with Failure to Thrive, and her NG tube has been lifesaving! I can guarantee she gets the nutrients she needs to grow and thrive. She tolerates the NG tube very well. She has pulled it out multiple times, but thankfully we live close to the GI clinic and a great Children’s hospital.”

Amy has found there are certain strategies to limit the number of times she pulls the NG tube out, such as taping it closer to her nose. She says it can be stressful at times, but luckily with her medical background she knows how to clean the tube 8 times a day. Even though her daughter has handled the NG tube like a champ, Amy and her husband have decided to transition to a G-tube, since their baby girl will need nutritional support for a little bit longer, which Amy thinks will aide in comfort and speech development.

Alexis: “Get a little white board so that you can write what you want to say as talking is so uncomfortable.”

Karen: “Taking anti-anxiety + pain medication to help with the uncomfortable pain and anxiety that NG’s cause. I refuse NG tubes now without serious meds, the trauma, pain, and discomfort they cause must be treated and I think providers really underestimate how traumatizing it is to have one, especially if it’s put in while you’re awake.

Amanda: “Ask for some nebulized lidocaine before insertion.”

Abbie: “Ask for throat numbing spray!!! I was given it my first time and then every other time I’ve had to ask, but I’m so appreciative the first nurse I had gave me some so I knew to ask for it in the future.”

Sarah: “I didn’t even know what an NG tube was until it was already inserted. I suppose the shock of how quickly the insertion went shielded me from the pain and discomfort. Numbing spray was the only way I could cope with the tube irritating my throat. Mine was in for three days while I had a bowel obstruction and the day it came out felt like FREEDOM.”

Becca: “They are the f***ing worst. You can quote me.”

Melissa: “I had one they put in while I was awake and after SIX tries, I was adamant on getting something to relax me. They put a little something in my IV and then it went down without an issue. I also had a smaller one, more child-sized than adult.”

Dana: “I wish I had something positive to say about NG tubes, frankly I didn’t cope at all until they gave me Ativan and eventually a muscle relaxer. Sometimes they can give you a numbing throat spray to help with irritation. After the first few days, it gets little more tolerable as your body gets used to it.”

Jennifer: “OMG. 26 years with Crohn’s and nothing traumatizes me more than the mention of an NG tube. I was about 95 pounds the first time I got one. I’m almost 5 feet tall, and after two tries of me not being able to breathe they realized I needed a child-size tube.”

Mayara: “When I had my NG tube, I used to suck on ice chips/cubes to help ease my sore throat.”

Claire says she’s been through the wringer with NG tubes. There was a point where she had 10 in one year!

She says, “Regardless of how awful NG tubes are and the damage (long or short term) they can do, they have saved my life repeatedly. I am no stranger to bowel obstructions. Developing strictures seemed to be a favorite past time for my small intestines. The NG tube is supposed to decompress the obstruction and stop or at least reduce the amount of vomiting (also helps to prevent aspiration). I will never forget how nervous I was before my first NG placement and even now as an NG vet, I still get very nervous. I always ask the doctor for IV Ativan or IV Valium beforehand.

Claire also says even if a doctor does not want to give a benzo after an opiate that they will usually give her a dose right before placement.

“Don’t be afraid to ask for what you need. I also won’t sugarcoat it; you will most likely gag and vomit during the placement. Ask for an emesis bag or basin. It sounds counterintuitive, but if the nurse doing the placement is experienced, they will be able to utilize you gagging/vomiting to get the tube in faster. Nosebleeds are also very common.”

After NG Placement: Getting Comfortable

  • Secure the tube well: Do not be shy about asking for gentler tape, extra adhesive, or adjustments. A well-secured tube is less irritating and less likely to tug.
  • Soothe nasal irritation: Saline spray, warm compresses, or a tiny amount of water-based lubricant around the nostril can reduce soreness in the first day.
  • Experiment with sleeping positions: Many find sleeping slightly elevated or on their back with a supportive neck pillow helps keep the tube comfortable.
  • Be comfortable: Wear loose tops, zip-up hoodies, or scarves if you want to conceal the tube and prevent snagging on straps or bags. Obviously, many people are choose to stay in their hospital gown.
  • Protect it in the shower: A bit of cling wrap or a small waterproof dressing keeps the tape from falling off.
  • Move with intention: Sharp head turns or bending forward quickly can tug the tube and cause discomfort. Slow and steady helps.

Support for Caregivers: What Helps Most

As a caregiver, it can be easy to feel helpless on the sidelines as you watch your child or a loved one or friend go through this. Here is how you can help ease that burden:

  • Watch for tension or kinks: If the tube starts pulling, the patient may feel nausea or pressure.
  • Track symptoms: Be mindful of any changes you may notice with coughing, reflux, or fullness. This can mean the tube has shifted.
  • Learn how to flush the tube: If this is a long-term situation, educate yourself so you can help prevent blockage and avoid urgent care visits.
  • Offer emotional space, not pressure: Let your loved one set the tone. Everyone is different. Some want distraction, others want quiet, some want humor. Follow their lead. You know them best, trust that instinct and know that even if they may seem frustrated or short, that anger is not geared towards you, but rather the difficult circumstance and situation they are enduring.

The Emotional Side: What We Don’t Talk About Enough

Having an NG tube can stir up fear, embarrassment, frustration, sadness, or anger. All these feelings are normal.

Many patients say:

  • They feel “less like themselves.”
  • They are worried about how they look.
  • They are afraid to sleep.
  • They are overwhelmed by the sensation of the tube at first.

These feelings tend to ease within 24–48 hours as the body adjusts. Give yourself grace. This is a medical tool, not a reflection of strength, identity, or dignity. It is ok to feel all the feelings.

Celebrate the small wins

Take this one like you do with all things IBD. Give yourself credit where credit is due! It is not easy and it is important to celebrate all the wins, no matter how “small” they may seem. You are making strides and growing through this journey, whether you realize it or not. What you are experiencing matters and your resiliency deserves celebrating!

  • The first time you swallow without noticing the tube
  • Sleeping through the night
  • Getting out of bed more comfortably
  • Tolerating feeds or feeling abdominal relief

When to Call Your Care Team

You may wonder what is “normal” and what deserves pushing the nurses light or alerting your care team. You should reach out immediately if any of the following happen:

  • You have trouble breathing or persistent coughing
  • The tube appears to be slipping out
  • There’s significant nasal bleeding
  • You feel intense nausea or vomiting
  • The tube becomes clogged and flushing does not help

You should never hesitate to call. NG tubes are temporary but important, your team expects questions. Classic example of better safe than sorry. You are not a burden to anyone.

Final Thoughts

An NG tube can feel intimidating, and while extremely unpleasant, they can help give you some relief while allowing your doctor to keep finding answers for you. With preparation, the right coping strategies, and the support of a caregiver or medical team, you can make the experience more manageable. Always remember you are never alone in your fears and setbacks and that your ability to cope and your voice matters.

Additional Resources:

Tricks of the Trade: Making NG Tube Placement Less Horrendous // ACEP

The Role of Enteral Nutrition in Patients with Inflammatory Bowel Disease: Current Aspects – PMC

NG Tubes for IBD: Video and Tips for Swallowing

Nutritional Support Therapy | Crohn’s & Colitis Foundation

Tube Feeding | My Experience with a Nasogastric Tube for Crohn’s Disease | Let’s Talk IBD

A Quasi-Experimental Study on the Impact of a Nasogastric Tube Placement Educational Program on Pediatric Nurses’ Knowledge and Practices – Shimmaa Mansour Moustafa Mohammed, Gihan Mohamed, Raghad Almushawah, 2025