cruising with an ileostomy

Hi, I am new to cruising but due to do my first cruise next year, Has anyone else here cruised with an ileostomy? I am concerned about disposal on board can anyone advise me please xx

Hi there! Congrats on your first cruise!

My husband has a port for peritoneal dialysis, and we cruise every year.

We contact the special access coordinator (usually a special 800 number to call) listed on the cruise line's website. We inform the coordinator of our special needs, and then we fill out a form that indicates what extra things we need. (Medical supplies dropped off at the port by the supply company and held until we are checking-in for embarkation, a large trash can in the room that is specifically for the dialysis bags and tubing, and lots of ice to be offered instead of water/tea/drinks due to his restriction of fluids.)

Sometimes this goes splendidly... sometimes it does not, and it is scary! In Houston, on the NCL Jade, we were on board but the medical supplies were not. It took many phone calls and me physically saying to the Jade's coordinator, "We have to get off of the ship if you can't locate the boxes at the port. We can't sail." She personally went into the port building and found the boxes after that.

No matter what, they want you to sail. Just make sure that you are notifying them ahead of time of what you need. Even if it is something that you MIGHT need, you have to make sure you tell them ahead of time, so they can have it for your sail date.

Cruise ship medical centers will have basic supplies... nothing specific to your care routine. Don't expect them to have any back-up supplies.

Make friends with people on your cruise ahead of time, whether it is on Cruise Critic, the face book, or the ship mate app. We found out that there is going to be another gentleman on our cruise that is from Canada, and he also does peritoneal dialysis. It's good to know that, in case he needs something, or if we need something.

We also find the dialysis center at each port of call. That way, we can stop by a clinic if something minior happens, or if we need an extra bag/tube/cap.

Other than preparing ahead of time, nothing else is different. He isn't allowed to get in public pools or hot tubs at home, so we don't do that on the cruise, either. He has to do his exchanges every 2-4 hours, and they last 30 minutes, so we book balcony cabins for him to sit outside while he does them. That way he still feels like he is on vacation, and not trapped in the cabin. While swimming in salt water is allowed, we aren't snorkel/dive people. We look forward to vacations to relax and explore different ports.

We don't book excursions that often, because there's always the chance that we need to return to the ship for an exchange in the middle of the port day. It's not a big deal to us... we try to plan it so we return, he heads to the cabin, I grab us a couple of burgers from the buffet, and we sit on the balcony and have lunch, usually people watching the pier. When he is done, we head back out for some shopping or a walk through the city.

We take each day as it goes. One day, we may not be able to cruise anymore... so, we are making the most of what we have while we can. Sorry this was so long, but I hope it helps you in some way.

Hi, many thanks for your informative post. Do I have to let them know? the main worry is disposal of the bags xx

Hi, many thanks for your informative post. Do I have to let them know? the main worry is disposal of the bags xx

Yes. The trash can they have brought us on the Gem and the Jade was a red, round, plastic bin with a lid marked medical waste. It was emptied at least 2x per day, sometimes more. If you don't tell them ahead of time, they could possibly have to remove a container from the medical center to put in your cabin, instead of getting an extra.

I also have an ileostomy and will be taking my first cruise in May over the holiday weekend. I have purchased the sure seal rings to contain any leaks that may occur. Have you checked out the Inspire website? Someone has asked the same question and the response was if you use a non drainable pouch, it will be treated as medical waste so you need to inform the cruise line to get the required container. If you use a drainable pouch, you can just place it in a plastic bag and toss it into the regular trash bin.

https://www.inspire.com/groups/ostomy/discussion/what-to-do-with-bag-on-a-cruise/?page=1#replies

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thanks for your replies very helpful, I have informed the travel agents and they have sent me a form to fill in and they have asked for a cert of fitness to travel, but I can't get this until nearer the date. Do you know how long before the cruise they need this?

I do not need to submit any forms due to my ileostomy so I do not know an answer to your question. You might want to contact your cruiseline to get the correct answer. I can usually get 7 days wear time with my appliance so I do not plan on having to change while cruising. I have yet to go swimming or use a hot tub since my surgery so I do not know how it will affect my wear time though.

I have had an iliostomy for 18 years. Have cruised 6 times now. Never let the cruise line know. I use a drainable pouch and just wrap the old appliance in a plastic zip lock bag if I have to change on board. I've done just about every activity you can imagine on ship and off without an issue. My only advice is take at least 3 times the supplies you should need and keep the numbers for your supply company(convatec,coloplast,hollister) on you to find supplies in an emergency. Lucky for me I've never needed the extra supplies or number but good to have just in case. If you have any other questions let me know.

I have had an iliostomy for 18 years. Have cruised 6 times now. Never let the cruise line know. I use a drainable pouch and just wrap the old appliance in a plastic zip lock bag if I have to change on board. I've done just about every activity you can imagine on ship and off without an issue. My only advice is take at least 3 times the supplies you should need and keep the numbers for your supply company(convatec,coloplast,hollister) on you to find supplies in an emergency. Lucky for me I've never needed the extra supplies or number but good to have just in case. If you have any other questions let me know.

.... and , although it might sound obvious - take your supplies aboard in your carry-on !!

...VTX-Al

I have already told the cruise line unfortunately ! I now have to get a fit note from the dr before I can board xx