IBD | Information | Ostomy
Hey y’all! ’Tis the season to venture beyond our own familiar bathrooms into the great unknown. For me, that means three days of Thanksgiving in a house with 25-30 of my favorite people (which is infinitely more awesome than it sounds), and a Christmas expedition back to the frozen tundra also known as very upstate NY. How is a girl with guts to survive?
Be intentional in your trip planning
Some initial basics to consider when you’re in the planning stages of travel may be considering things like: the easiest time of day for you to travel, making sure you have long enough layovers at the airport to accommodate a true IBD bathroom run, and figuring out some good pit stops on the road. Thinking about what you eat in the day before and of your travel is probably also a good idea. As tempting as that airport Starbucks is at 6:00 AM, I know that frappuccinos make my ostomy pouch blow up like a balloon.
Prepare for an angry guts and/or ostomy apocalypse
By now, I think we’ve all learned to never trust our bodies to behave in public. Stave off disaster by planning for the worst- and in our world, that often means the times when our guts decide they would rather just spew everything out, than keep it inside. One suggestion is to have a plastic bag with a change of underwear and some comfy pants for an emergency change and disposal. Bring a ridiculous amount of underwear, and enough ostomy supplies to care for your stoma at his/her very worst. When I had my j-pouch, that meant a couple pairs of underwear for every day. With my ileostomy, I pack assuming I could need a change daily, even though I normally change only twice a week.
Have your medical history handy
Your insurance card should already be in whatever bag or wallet you carry on your person. Even if your disease is well-controlled and hospital visits aren’t a part of your routine, you don’t want to be without it in a crisis. When traveling, you may find it helpful to have additional information written down and ready to go. If you land in urgent care or the ER, the medical professionals you encounter will need to take your IBD and associated medical history into account, in order to treat you effectively. I suggest writing up a document containing your current meds, past surgeries, and significant hospitalizations, and contact information for the key members of your medical team. You can print up a couple copies to keep in your bag for easy access and sharing.
Be particularly kind to your butt
I’m just going to assume that you all know how bad the toilet paper in airports and at rest stops is. And then there are the times you run into a stall in a panic only to discover- after you’ve gone, of course- that there’s no toilet paper at all. You can buy tiny roles of to-go/camping toilet paper, and they come in hard plastic containers so your bag doesn’t end up resembling a Halloween prank. Packs of baby wipes are also a solid option. A caveat here if you’re flying- I would suggest packing a decent size container of wipes in your checked baggage (in a plastic bag in case of leaks) and then having a small travel pack that stays with you. Wipes will often set off the security scanner as a liquid/gel (my ostomy adhesive remover wipes do it every time), so try to avoid a potential problem and find a little pack that will fit in your one quart Ziploc bag.
You knew this was coming, ladies, and indeed, we have arrived. Let us reflect upon the excitement that is security screening courtesy of the Transportation Safety Administration. First and foremost, look up the current rules ahead of time and be intentional in your packing. Then, with a firm grasp of screening procedures, be ready to advocate for yourself and keep your eyes glued to your most important items.
As I mentioned above, “liquids” can be tricky. Keep the bulk of it in a checked bag, if you can. There are some exceptions for excess quantities of medically-necessary necessary liquids, which you should declare at the beginning of the screening process. These will almost definitely be inspected, so have it in a safe package where you can pull it out, and stick it in a bin independently. Having a prescription label on the outside, if possible, is also a plus for liquid medications. I travel hooked up to my IV backpack with bags of IV fluid, each one having it’s own prescription sticker. Read the full guidelines for medications and medically necessary liquids by going to https://www.tsa.gov/travel/special-procedures , and then choose Medications from the drop-down menu.
For some, one of the most stressful airport endeavors is being screened with your ostomy. You can read the TSA guidelines here https://www.tsa.gov/travel/special-procedures, and then choose Ostomies from the menu. In a nutshell, TSA procedure does NOT require you to show your pouch, and the officer does NOT need to squeeze or touch it. You will likely be asked to do a “self pat-down” of the area by running your hand over it (on top of your shirt) and then have your hands tested for explosive residue.
This is a situation where you should really be on top of your game. Don’t assume that the random TSA officer has a solid handle on what as ostomy is, even though they should have a pretty good idea. Be assertive, but remain polite. When starting a pat-down, you can always say something like “Hi, I have an ostomy. Do you know what that is?” or “Please be careful, my ostomy is here (point), and it might be a little bit full.”
One more heads up- even a small amount of output in your bag will likely set off the full body scanner, and after that wait in the security line, there’s probably going to be something in there. Don’t panic if this happens.
A list of tips from the UOAA can be found here: https://www.ostomy.org/Ostomy_Travel_Tips.html. You may also find it helpful to carry one or both of these cards from the TSA and UOAA: www.ostomy.org/uploaded/files/travel_card/Travel_Communication_Card.pdf.
There are a few things available to you at airports that you may not have thought to take advantage of. You can always request a wheelchair escort from the check-in counter to your gate in an effort to preserve some energy. Keep in mind, that it is polite to tip the attendants for their hard work. Alternatively, it’s sometimes possible for a loved one to get a gate pass and help you to your gate when you are traveling alone. My sister often does this for me and it can make a huge difference in terms of getting an my complicated medical supplies through security.
You may also be eligible to pre-board the aircraft. Ask for a pre-board pass at check-in or at a ticket counter for your airline in the terminal. I do want to add the caveat that my mask and IV backpack worn while flying make it easy to visually identify me as quite ill, and that you may have to really advocate for yourself if you’re about to get the dreaded “but you don’t look sick” line. However, don’t be afraid to do so! My backpack (as smashingly cool as it is) makes my disease no more valid than yours.
Create a tiny stash at your destination
When traveling to be with supportive friends and family, consider asking them to pick up a few small items for you in the midst of their other shopping and preparations. This could include bathroom supplies like soft toilet paper, baby wipes, or air freshener (which, to be honest, helps them more than you, right?) or some simple food staples (animal crackers, yogurt, and applesauce for me). Don’t be afraid to let them know about your current dietary strategies, either. Many consider it a privilege to host and serve guests and would like to accommodate you in any way they can.
Happy holidays from the Girls with Guts team and the angel of intestinal mercy!
Thank you for this post! Although I do not have a colostomy I do often get sick when traveling with a bowel blockage or pouchitis. Doctors believe it is possibly due to change in diet and fatigue. Last summer while traveling in Europe I ended up in an Italian hospital for 10 days. The Italians were lovely but the language barrier was difficult. Never travel without travel insurance outside the country . Check you policy for coverage. Medical travel insurance believe it or not is rather cheap. I am so delighted to have found you blog! All my love to everyone suffering from IBS!!!