Hi, all: So, in the years I've been here, I've seen lots of "travel" as a like, but no one organizing a trip. Sure, you can look for a (one) travel companion, but how about a group of us together? Some nice all-inclusive in the Caribbean/Mexico.... blue ocean, "bodies in the sand, tropical drink melting in your hand"... with people you would be comfortable being around in your swimsuit. I've been there about 50 times and have organized trips. Anyone want to chat about the possibility?
trifinisher
Sep 20, 2025 10:09 pm
warrior
Sep 21, 2025 11:12 am
Ha! Easier said than done, friend. I like your thinking.. 👍
However, I'll give you an idea of what just happened as an example.
There was a conference recently in August in Orlando, Florida, here in the States.
Even members from MAO living in Florida didn't go..
I personally met 4 members from this site while there.. I personally mentioned the conference in a topic thread here as early as January of this year. Even today, some ask where was it? When? 🤦.
You have good intentions for a meet and greet. Financially and physically, however, some can't do this.
The sad part about this conference was MAO had no representation—a table, speaker, a call out—just to say "you're not alone." 🤷♂️
And another thing, I called out MAO on this while in Florida. Still haven't heard from them. 😳.
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Posted by: ejbetty
Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
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TerryLT
Sep 21, 2025 8:53 pm
I say, go for it. Considering we have members literally all over the world, it might be a challenge to arrange, but stranger things have happened. I won't be joining you, but I would be cheering you all on from the sidelines. I've decided that for myself, I'm sticking to short and close-to-home trips, by car mostly. Having an ileostomy saved my life, and I wouldn't change a thing, but the type of travel I used to love just isn't realistic anymore. I hope you get some takers!
Terry
trifinisher
Sep 22, 2025 2:02 am
I was supposed to be a speaker at the conference... but getting to and from the USA as a Canadian... I passed :-(
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warrior
Sep 22, 2025 10:14 am
Ahh.. Sorry to hear that. Your feelings are well put. I'm sure others feel the same way with the current political climate.
rlevineia
Oct 01, 2025 5:17 pm
Not too many urostomies on MaO. Seems mostly ileostomies, as many colostomies end up there. Draining urine is easier than thick stool. It makes traveling more difficult, especially on jets. My 84-year-old mom had bladder cancer with a stoma. It's easy to get in and out. I've had MS for 36 years. No hot sun for me. I'm a cold weather guy and love to hike in freezing weather. No sweat. I just got back from 3 weeks on the AT and Smokies. I needed a sweatshirt at 6,000 ft. I haven't swum yet, but I used the hot tub at my cabin.