Long-Distance Travel Tips with an Ileostomy

In a few months, I will travel from Iowa to Sweden for 9 hours. I have an ileostomy that at times requires emptying twice in an hour. Is there any way to reduce output? Will my pouch get puffy more on the airplane? I would appreciate any long-distance travel tips.

Thanks, Mary

My ostomy nurse has me on Imodium 3 times a day, and it makes such a difference. I have an ileostomy too, and output was always high. Also, cut back on drinking a bit and eat foods that help slow down your output.

Immodium 3x every day? My revised ileostomy has only been 3 weeks, so I'm hoping in time it will settle down. I no longer have a colon, so I'm not sure what to expect in the long run. I had a few different colostomy sites over 6 years. Pray this is it.🫠

Loperamide (Immodium) can be used to slow down output. Your insurance may cover loperamide, which would be cheaper than having to buy OTC Immodium. You typically take loperamide 90 minutes before each meal and before going to bed. You can take 2 mg/meal, up to 12 mg/meal. You should not have to take more than 48 mg/day. 96 mg/day is what has been prescribed for persons with a short bowel. You will have to determine the dosage that works best for you.

I have taken Imodium to slow down output. It works, but when you are first starting out, you should expect high-volume output. You can use a high-volume bag that holds more output. If you eat less before you fly, you should have less output during your flight. There is a bathroom on airplanes if you need it. Try to get an aisle seat so you don't have to get up past other passengers. You might be able to explain the need when you book the tickets. Tell them you have a disability that requires access to a bathroom frequently, and they should be able to accommodate you.

My Ostomy Journey: Keyla | Hollister

Yes, 3 times a day because my output was so runny with my ileostomy.

Probably don't want to start taking loperamide until about 8 weeks after surgery — you certainly don't want to risk constipation on your trip.

I made numerous trips to Sweden for work-related reasons. Reduce input, reduce output. You can also eat marshmallows. I eat 2 prior to showering to stop output. You may need to consume a couple every couple of hours.

Safe travels.

Briab

Hi Mary. I'm from Iowa City and had a post-op ileostomy 4 years ago. I flew round trip to Japan in October. It was 16 hours one way and 22 hours back to CR. Boeing toilets are very small. Kneeling failed as the jet bounces a lot. Suggestions: Eat thick foods hours before you leave and empty before boarding. Eat very little on the flight. What goes in must come out! I carry twice my ostomy gear, one in checked luggage and one in carry-on. Airline toilet paper is lousy; I carry my own wipes, which are easier to use. I did invent an emptying device that fits between my knees, but I didn't use it. Trevlig Resa!!

What's works for me when knowing the time I'll be traveling: keep in mind before you go anywhere, slow down on drinks, sip sip. Eating light as you can! Marshmallows, slow down input. Remember that!!! Anything gassy, stay away; less burping the pouch. Hope this helps. Safe travels.

Mary, dehydration is a problem when flying, and dehydration when you have an ileostomy is serious business. You should let flight attendants know of your need for hydration and restroom access.

Ostomy.org has some helpful information about traveling with an ostomy:
https://www.ostomy.org/ostomy-travel-and-tsa-communication-card/

In the ostomy groups on Facebook, some have reported no problems going through security while others have been treated inappropriately, so you should know your rights.

You are allowed an extra carry-on bag for medical supplies, but there are rules to abide by (e.g., only medical supplies in the bag, size limit). You should research this as you prepare for your trip.

From the Center for Family Medicine:

"Dehydration during flying can have the following effects:

Lower humidity in the air can lead to quicker dehydration.
▪️Dry nasal passages can make people more susceptible to catching airborne viruses.
▪️Air travel can cause mild dehydration, leading to headaches, dizziness, and fatigue.
▪️Not getting enough fluids can interfere with short-term memory, attention, and mood.
▪️To stay hydrated, drink plenty of water before, during, and after the flight."

I've really been wondering about marshmallows. What's the best timing to take them? How many do you take? How long do they work? Any info would be appreciated.

I have an ileostomy and pouch.

I traveled on an 11-hour flight to Thailand and had no problems whatsoever. I emptied the pouch a couple of times and had no buildup of "gas." Go and enjoy yourself.

Good day,

I have flown many times in the nearly 5 years that I have had my ileostomy. The latest was a round trip to and from Europe. Flights were over 12 hours. A few things I've found. When going through TSA, your bag will be detected during the body scan. Most screeners will ask what is in the area of your stomach. I'd advise that I was wearing an ostomy bag. I'd then be asked to rub the area over my stomach, then they would wipe my hands with a small pad. This was put into a screener to detect any explosive residue. It was very low-key and quick. An exception to this was when we left Amsterdam. I wear an ostomy bag support belt. I went through the scanner and this was detected. The screener asked about "my belt." I advised that it was a support belt for my ostomy bag. There must have been a language barrier because he did not seem to understand what I was saying. I repeated "ostomy bag" a few times as he started tugging at the belt. After I showed him, he asked again, "belt? belt?" Getting a little frustrated, I said, "It's for my Sh@ Sack!" He then let me through. I went to the gate and began boarding about 2 hours later. After I gave my boarding pass, I was asked to step aside for another search. I went to an area away from the line and a more detailed search of my person and packages was conducted. Having nothing to hide, I was let on. I later realized that I may have overreacted to the initial searcher. He quite possibly thought I was calling him a Sh@ Sack, thus the additional attention prior to boarding the plane. Lesson learned, be patient..... Also, it might be a good idea to learn the word for "ostomy bag" in the native language. I've been to nearly 10 airports and the bag was detected. At Heathrow, however, there was a metal detector. That did not pick up my bag, so I was waved past the body scanner. Hard to figure that out.

While on the plane, I use the same rules as before surgery (and with UC). Go before you board and sit on an aisle. When using the bathroom on the plane, drop some toilet paper in the toilet bowl before you empty your bag. It helps the output from sticking to the bowl. I also bring a water bottle or cup in there with me to help with rinsing the bowl. It's pretty noticeable when you have to flush three times for the bowl to empty. That loud sucking noise can be heard throughout the plane. You will get looks like "are you okay" or "is it safe to go in there now."

Hope these little bits of insight can help. Aside from these little incidents, the bag was barely a concern.

Have a great trip,

SharkFan

Every thing SharkFan said - the couple of squares of toilet paper in the bowl makes a huge difference to airplane flushing. I usually enjoy a gin & tonic during the flight.... I keep the little empty plastic gin bottle discretely in my pocket then use it to add a bit of water to the pouch to help rinse it out fully. Useful all holiday.

At Heathrow last year they swabbed the actual outside of the pouch and it tested positive for explosives!!! They had to call a supervisor but as my shoes, wheelchair, luggage, etc. were clear they eventually let me through. Still no idea what I must've eaten.

I also pack 2 x supplies, hand luggage, and check in.

Yikes! I'm not sure if you have Taco Bell in the UK, but this reminded me of the many funny memes poking fun at them.

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I vote irrigation. It gives some semblance of control over something.
And a few squirts of Poo-Pourri in the bag is very helpful, by the way.

Irrigation is not an option for ileostomies.

You really need to test marshmallows out — they never worked for me; they only caused me diarrhea due to the sugar. Remember the mantra on this site — everyone is different; what works for one may not work for another.

It's easy enough to experiment; give them a try because they do work for many. Others say jellybeans work for them.

@Mary if you use a 2-piece appliance, you have an additional option. Take closed-end pouches for the flight. Then you can snap off one pouch and snap on another in seconds. Place the used pouch in a zip lock bag and place it in the sanitary bin in the bathroom.

Also, take a small bottle of odor eliminator spray such as Hollister's odor eliminator spray:

https://www.amazon.com/Odor-Eliminator-Spray-Unscented-Pack/dp/B01BV3LQN4/

Yo Ms. Potato, Ileostomy here. I had the same question last year. Trial and error worked. Every stoma is different. I found that three Stay Pufts and a 45-minute wait worked for me. I used to go through lots of Chux and wipes. What a mess! I've been using the same Chux for a month and average two wipes per change. Nearly no leaks, ever! Avoid activity until after you finish changing. It will start peristalsis, and Mr. Poop will arrive with a fury. Eat thickening foods the night before. It slows everything down. For example, pretzels and two chocolate cookies as snacks at night work for me. Empty the next morning.

Found that all the water I needed on my flight made my output a splashy mess. Poop all over the place! Used to use Hollister and love the little blue bottle. Switched to Convatec and the liquid leaked out of their seal, yuck. Went to Adapt. Clear and thick like maple syrup. No more mess.

I have had a high output ileostomy since September 2023. I feel your pain!  Doctors have no solution for me but Lomotil at every meal and Imodium in between helps somewhat. I generally spend 2 to 4 hours in the loo every day around midday even on these meds and am frequently having partial blockages. I don’t have a colon either.  I have even contemplated accidental suicide, if that makes sense. However I would never go through with it because of my faith and family.
i wish you the best and just writing to say, you are not alone.

Thanks for the tips and your story. You had me laughing at sh*t sack. I'll get acquainted with that in Swedish.

You talk of wipes and chux? Anyway, I installed a handheld bidet, and my bag gets cleaned out, using a lot less TP. 🙃

Sometimes it gets me down, but thoughts of family bring me back. We earn a pity party once in a while!

@Isla, I am glad your faith prevented you from making a horrible mistake.

Some studies have shown that loperamide is more effective than Lomotil for chronic diarrhea. For this reason, I use loperamide instead of Lomotil. You are not taking loperamide in the manner recommended for long-term use. Loperamide should be taken 4 times per day — 90 minutes before each meal and before bedtime. The minimal dosage would be 4 mg before each meal and 4 mg before bedtime. Loperamide is metabolized in the liver — for high-output ileostomies, this means much of it is lost before metabolism, requiring higher dosages such as 12 mg before each meal and 12 mg at bedtime. Those with short bowels have very fast and frequent digestion and often require the maximum dosage of 24 mg before each meal and 24 mg before bedtime.

You may want to consult with your doctor about stopping the Lomotil/loperamide combination and trying a high-dosage loperamide regimen. You will need to experiment to find the correct dosage for you. You should definitely be able to cut down on spending 2 - 4 hours in the bathroom in one sitting — assuming moderately sized meals.

I'm also a person of faith, but sometimes I have darker days. A short time back, my bags kept failing, and I had to replace them seven times in two days, and I think, why me? I pick myself up and brush myself off for the new day! I wish it were different, but it won't be. My husband is supportive, and that really helps.🙃🫠