Hi All,
I am not new to having an ileostomy, have had one for about 10 years, and a j-pouch for 20 before that. I am retired now and would like to travel but am really afraid of getting sick or having a blockage while travelling. Have you ever worried about those things, and what do you do to assuage your fears? I feel like my fears are getting in the way of me leading a full and active life!
Thanks
Nope. All the odd ball “new” foods you’ll be enjoying will make sure you don’t get blocked. 😁
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G-Day Pam, is your fear because you have lots of problems with your ileostomy now, or is it behaving okay? I am the same as you; I got my colon removed 20 years ago and got a J-Pouch, but after many years of problems with it, I got it removed and went for my wonderful ileostomy. Life is so much better now with a bag. If you can handle yours in everyday life now, then you will handle it just as well when you travel. Go book your next holiday and don't let the bag ruin your life. Regards, IGGIE
No one lives life as if none of us are promised tomorrow. I know I've had my ileostomy since my late teenage years, so I see them and life a lot differently than some. Take a few long, slow, deep breaths in and out, relax, write down the first place you want to go, and arrange to go. I'm sure you won't have any problems, but with 30 years of experience with a J-pouch and ileostomy behind you, you have lots of experience to deal with anything if it did happen. It's time to start living again.
Do as your profile name suggests, just DO IT!
16 years ileo here and travelled around the world a few times or more and if it wasn't for the ostomy I wouldn't have seen this:-
Trolls Road, Norway
or this, Glencoe Scotland
or seen the sunset on the Lutheran Church at 2 o'clock in the MORNING (!) in Alta, Norway in the Arctic Circle
or stayed here (Hotel 41, Buckingham Palace Road, London - OMG it was bloody amazing!!!) 😍
and I could go on and on and on. "A life lived in fear is a life half-lived", I hope you find the courage to take on the world! ✧💃
🗺️⁀જ✈︎✈️ 🛍️ 📸 🎧 🎫🗺️⁀જ✈︎ 🗺️⁀જ✈︎
Please, please hear what the others are saying. Don't allow wearing a pouch to define you. You're retired - make every day count - travel the world. 🌈
I think it is normal to have fears, but don't let that stop you from living. You can be careful about what you eat while traveling as much as you are careful at home. It's ok to ask what is in something and to take a pass on it if you feel like it could cause you some trouble. Just enjoy seeing new things and being in new places. Keep a bottle of water with you to stay hydrated and enjoy yourself.
So true. Just returned from a five-week visit to your neck of the woods. To making every day count. 🌈
I’ve had my ileostomy a little over 2 years. I recommend the book Yes We Can! By Barbara Kupfer, Kathy Floey-Bloch, Michelle Fallon Kasouf and W. Brian Sweeney, MD. All ostomates. Filled with real life helpful information. I have travelled both in and out of the US both before and after surgery. Good to remember that in the US ostomies are covered by the ADA and airlines give a free “medical bag” carry on (does not count as part of your carry on allotment.) I also throw in a change of clothing in case of in flight blow out. Never had problems. I also take to heart the advice,”don’t take twice as much equipment as you need, take three times.” The book contains listings of ostomy equipment distributors worldwide. Though I can’t say travel and spontaneity are still in the same sentence for me anymore, it is doubtful they would be anyway at my age. A little due diligence = a lot of fun.
I had my ostomy surgery in April of this year. So far, I have flown to Hawaii and Oregon from Arizona, and went on a road trip for a week, and next month I am going on an 18-day cruise. My husband overpacks ostomy supplies... it is okay with me just in case I want to stay longer!! So far, no issues on any of the trips.
Good luck
My worst issue is the jobsworths not allowing my medication through, and I have a large hernia, so I have not been traveling. Also, radiation damage to water pipe medication. I do not trust UK jobsworths, so it could be thousands lost. No guarantee it's up to jobsworths on the day, not the rules. That's UK shit.
Yep, I agree, but water works damage in hospital radiation prostate cancer, now colon cancer. If I take in water, I have seconds to pee, so it's difficult, and I have a large hernia.
Be aware of changing air pressure on an airplane. I learned the hard way. Just be extra careful.
Deja vu! Many of us have been there. I was scared to travel anywhere. Became a hermit for a while. Pre-op, I traveled the world. When my best friend brought me home from Mayo, he said, "Small steps will get you there." Hiking allowed me to get strong and confident. Two hours hiking away from humanity, I learned to manage my output. Invented a device to empty my pouch in the middle of nowhere! Two years later, I hiked the Continental Divide. Last year, San Diego. Japan in October. Might I suggest wandering Montreal first, then Niagara Falls? Escargot, yum! Try Thousand Islands next. Remember to chew well and avoid skins and peels.
As Nike says, "Just do it!"
Traveling with an ileostomy, I've been with an ileostomy for over 30 years. I've traveled to the Philippines 3 times. I constantly travel domestically with a minimum of issues. It's my life, and I will do what I need to be fulfilled! I just carry supplies in a backpack and watch what I eat. The biggest issue is TSA at airports. LOL! Good luck!
Oh yes, I've worried about those things, too. That's why I suggest conquering your travelling fears in baby steps.
My first mini-vacation was to a friend's AirBNB house only an hour's drive from my home. Granted, I did have my husband with me, so I wasn't feeling as insecure as I would if I were travelling alone. The trip was a piece of cake, and very relaxing.
Having had your ileostomy for about 10 years, you're probably pretty experienced with all manner of possible mishaps. Have you been prone to blockages or getting sick in the past? If not, managing your ileostomy on the road isn't much different than at home. With regard to food, you can have menus modified in most restaurants if need be.
As for getting sick, unless that happens often for you, I wouldn't worry too much about it. Just make sure to get the extra Blue Cross or OHIP coverage, which will ensure your hospital bills are covered in the unlikely event that you DO get sick.
Your anxiety over travelling is quite normal, but the more you do it, the easier it will become. Maybe start with a weekend trip closer to home, then a full week, and so on.
My widowed mom, rest her soul, would take a cruise every other year, even to the places she was previously afraid of (like Russia) or adventurous Alaska or her favourite, Egypt. At the age of 87, with a myriad of health problems, she did it all!
Here's hoping you have a fabulous New Year full of wonderful travel adventures!
M
xo