When you’re living with Crohn’s disease, a form of inflammatory bowel disease (IBD), and have an ostomy, the holiday season always brings a mixed bag of emotions. Even though I love seeing family and celebrating the holidays, I also dread invitations that require me to spend the night at someone’s home.
For a long time, I avoided spending the night with relatives because I was worried about managing my diet and my symptoms away from home. I was also stressed out about potentially having my ostomy bag leak in someone’s bed. But I missed seeing family and fully celebrating the holidays, so I talked with other women with IBD and ostomies, experimented with taking overnight trips close to home, and found a system that works for me.
While it may take time to set up a system of your own, here are some useful strategies worth trying to make your experience as a houseguest manageable and stress-free.
Staying on Top of Your Symptoms
Managing my symptoms while traveling is essential to enjoying my time away from home. Common symptoms I have are high ostomy output (diarrhea), fatigue, nausea, and abdominal pain. These symptoms can be tolerated at home and do not always require intervention. But when I’m away from home, they can disrupt plans and be exacerbated by the stress of travel and changes in my routine, such as eating at different times or in different quantities than I usually do. One way of tackling my symptoms is to take over-the-counter and prescription medications to reduce them. I always bring extra antidiarrheal, anti-nausea, and pain-relief medicines when traveling.
I also try to follow my usual schedule and routine. Even though it can be tempting to indulge in rich foods or stay up late, I try to stick to what works for me at home, even when I am a guest.
To reduce the chances of my ostomy pouch ballooning or leaking overnight, I use sachets like Convatec Diamonds Gelling Sachets or Trio Pearls. These products thicken up liquid output, absorb some of the gas in my pouch, and have the added benefit of reducing the smell. My bag expands less (fills with less gas and output), which decreases the chances of a leak. I also change my pouching system the morning I plan to travel, so I know it’s secure.
Finally, I pay attention to what my body needs. Sometimes I need extra rest while visiting. So, I give my host a heads-up that I’ll need to have some downtime in the afternoon for naps or resting.
Planning Your Meals Way Before the Visit
As a person with IBD, figuring out what to eat on a daily basis is challenging enough, let alone when you’re traveling. So before I accept an invitation, I have a straightforward conversation with the host about my diet.
I also do the following:
- Bring my own snacks and meal replacements like Ensure or Kate Farms peptide formulas, just in case. That way, I have diet-friendly foods on hand if my host forgets my dietary restrictions or makes a dish I can’t tolerate.
- Offer to bring, purchase, or prepare a meal for everyone to enjoy.
- Explain ways my host can accommodate me. For example, if they’re making a pasta dish with ingredients I can’t eat, I request they leave some of the cooked pasta plain.
Bringing the Essentials
I joke with my family that I don’t travel light and often overpack — even for an overnight trip. Preparing and packing more than I need also relieves some of my anxiety about being a houseguest.
Here’s what I make sure to bring:
- More ostomy supplies than I think I will need. I usually change my pouching system every three to four days, but when traveling I bring enough ostomy supplies for a change each day I am away.
- Double the amount of prescription and over-the-counter medication, and I leave it in its original containers. Even though the Transportation Security Administration does not require this added step, some states require it. Even when I’m driving, I use the original containers.
- An index card in my wallet with my insurance information, medication list, and relevant medical diagnosis and information. It also includes my primary care physician’s name and telephone number, my gastroenterologist’s name and number, and emergency contact info. I make sure at least one person I’m traveling with or visiting knows where this information is in case of a medical emergency.
- Bathroom supplies for when I’m driving long distances, during which there can sometimes be long stretches without a rest stop or public bathroom. These days, that means bringing a container I can empty my ostomy bag into if need be. Before I had an ostomy, I would bring toilet paper in case I had to go in the woods along the highway. For people who live in more populated areas, I have heard that having a portable or camping toilet can be useful and relieve some anxiety about stops. Bringing incontinence briefs might also be useful.
- Extra clothing, in case I have an ostomy bag leak or a bowel accident.
Coping With Sharing a Bathroom
I’m an early riser and often wake up long before my hosts, which is a blessing, since it allows me to spend time in the bathroom before others may need it. Before I had my ostomy, getting up early was even more important, since I had diarrhea in the morning. I would often have to spend an hour or more in the bathroom first thing in the morning. I was always worried that I would wake up later than usual and not have access to a bathroom, leading to me potentially have an embarrassing bowel accident, or that I’d hog the bathroom when other people needed it.
The added stress around morning bathroom availability and diarrhea created a cycle in which I had more diarrhea while traveling than I did at home. Today, I spend less time in the bathroom, but I find that I have added anxiety about needing to do a bag change in the morning. To ease that stress, even though I’m naturally up early, I set an alarm to ensure that I wake up and use the bathroom.
But even if you do come prepared, mishaps can still happen — like when my ostomy bag exploded in my sister’s new car, or when it leaked while sleeping at a friend’s house. I have learned, though, that even when my worst fears come true, it’s never as bad as I think it will be. My sister’s new car? After using Febreze and stain remover, it was fine. My friend’s bedding? Nothing that her washing machine, hot water, and bleach couldn’t fix.
If you’re having doubts about staying with loved ones this holiday season, remember that planning and preparing ahead can help ease travel anxiety and make being a houseguest an enjoyable and memorable experience.