If getting a hotel room and limiting walking time will make you more comfortable, then do it. Go visit your sister in whatever manner you can.
You will gain confidence with each thing you do, and it will get easier.
The self-imposed limitations will drop away when you're ready. There is no deadline. The goal is to live your life, do what you want to do, and enjoy it. Try to enjoy the journey.
I am also a loner by nature. I'm 4 weeks post-surgery and cannot imagine going out for more than a doctor appointment. I even stress about that. I don't really want visitors unless they are certain people. I hope this passes soon. I am looking forward to reversal surgery, hopefully in a couple of months. I hope it won't be longer than that. I work in a school, so I'm off for the summer, but will have to go back in August. I can't imagine going to work. It terrifies me.
This is a remarkable community of 40,919 members.
You will get real advice from fellow ostomates who truly understand you - things you won't find in the books.
And it's not all about ostomy - there is friendship and relationships too.
Privacy is very important - your profile is not visible to the outside world.
Mysterious Mose
I take part in these forums almost every day. They and the people that contribute to them have made all the difference in my having the courage to live a normal life with an ileostomy. The people here are marvelous and come from all walks of life and from all over the world. Hearing what others have lived through has really helped me put my own experience in perspective. I highly recommend all ostomates and caretakers of ostomates to come join us.
Hi Robjac2! Deja vu! Got home from 4 months in a smelly, gross nursing home. Still weak, it scared me to be alone, but worse, to face the outside world. Groceries delivered, only MD appointments, to venture out! I started walking, 2 blocks, 1/4 mile & 8 miles in 1 year. Yes, I leaked in my car. Kept a towel under my seat. I avoided using outside toilets until I used one at my best friend's home. He reminded me when he brought me home that recovery takes small steps. In time, you will learn how to control your output. 75% of the time, I keep it thick. Easier to manage & change. I have gone 6 hours a few times. Emptied at Petco Stadium, yuck!! Hold your breath & lean over the disgusting bowl. Cubs won! Don't let life pass you by. -My Mom RIP
So much good advice! I want to add that dehydration, as your body adjusts to a new “system,” is also an issue. I often got faint in checkout lines, hot and dizzy during my first outings. Lots of water and some rehydration powders helped. It never happens anymore since my body figured out the short bowel was around to stay. Good luck!
I was suffering from severe agoraphobia (fear of open spaces) before I was diagnosed with Crohn's. I was always worried about getting to a toilet.
The ileostomy has helped me in many ways, but I still have that fear at times when traveling. Take this weekend, when I took a long train trip and had to get an alternative because of cancellations. I made sure I used the accessible toilet before the train left, so I was able to cope with a long delay and immediately sought out the toilet when I got to the destination.
Like others have suggested, take short trips and get familiar with places to build your confidence.
And you will find that real friends will understand if you have to change plans or cancel.
Hello from Canada 🇨🇦
I have had my bag for over 40 years! I am 72 now and have traveled all over the world without any issues. Try small trips, and you will find that you can do anything!
I jokingly called my kit to go out with my “diaper bag” for a while. Same principle, any output can be cleaned up and a fresh pouch applied, just like changing a diaper—but it happens far less often for us than for babies!
Have had only a few leaks over the last year plus, and each time it was a bit different, but I still managed it, and sometimes living through it and realizing it's not all that awful is the best “cure” for the anxiety. Don't let your stoma become a cage—enjoy life!!!
Is the reason that you often have leaks? If so, it would be good to figure out why that happens, even if you need to get help from a wound care/ostomy nurse. If I feel that I will have a problem with my ostomy, I will place a couple of paper towels inside my underwear to prevent leaking through my clothes and to give me a little more confidence. I also carry supplies with me in my car for emergency changes, including a change of clothes. I hardly ever have to rely on this, but again, it's just a precaution to give me peace of mind. I have lived with mine for almost 50 years. It saved my life, and I am thankful that I have lived a full life. I have traveled all over, including taking a 12-hour flight from LA to NZ. Sometimes, if need be, I might need extra time in the bathroom, and I will alert the flight attendant that it will take me longer. All that being said, relax and enjoy your life.
Remember I said I like to be organized. I have no trouble finding my keys 😂
Whereas my philosophy is "A place for everything - and everything all over the place"! But I do make an effort to have my kits of a Ziploc freezer bag with 2 or 3 bags, release spray, wet wipes, kitchen roll, and "doggie bags" stashed in my car, backpacks, rain jacket pocket, etc. In 7 years now, I think I have only had one panicked "Oh God, how do I get back to the car without something awful happening"!
Whereas my philosophy is "A place for everything - and everything all over the place"! But I do make an effort to have my kits of a Ziploc freezer bag with 2 or 3 bags, release spray, wet wipes, kitchen roll, and "doggie bags" stashed in my car, backpacks, rain jacket pocket, etc. In 7 years now, I think I have only had one panicked "Oh God, how do I get back to the car without something awful happening"!
Left the house and put on a wrap. I feel like it will let the stool come out. Is that a problem?
“Will kit let.” Huh? In my experience with a colostomy anyway, the poop is coming out when the poop wants to come out. Any cover, wrap, belt, etc. might keep it from sliding to the bottom of the bag, but the poop is coming out. The biggest issue I ever get is when I poop sitting straight up and down and my bag is squashed by my 6-pack abs and the poop can't go anywhere, so I get it pancaked all in the top 1/4 of the bag. And that's with no wrap/belt or with, doesn't matter.
Oops, autocorrect. Meant, will it let the stool come out with the wrap on? I have no six-pack! Lol. But I do get pancaking a lot.
Most wraps aren't tight enough to keep the poop from sliding down. But if you tend to pancake anyway, it might be worse with the wrap. I rarely pancake, so it is hard to say.
My output is pretty thick and does pancake. I think I will use the wrap only when necessary for short periods. It definitely won't let the output go down. If I don't use it, my bag shows even through dresses two sizes too big for me. I hate going out!
G-Day Alex,
Is that a 6-pack or a 1-roll, 2-roll, 3-roll, 4-roll, 5-roll, 6-roll?
IGGIE
LOL. Maybe one little roll. 😬 🤫 My girlfriend keeps burning calories off of me.
When you're out and wearing a wrap (or girdle or hernia belt, it's called lots of things), one suggestion is this: every so often, go into the bathroom and lift your wrap up or even off, then use your fingers to “pet” the outside of the pouch and slide or smear the stool that's sitting on top of the stoma and trying to pancake, to push it down into the bag.
By doing that every 1-2 hours, I'm getting lots less of the pancaking and then lots less leaks from pancaking.
And the softer your stool, the easier it is to slide it off the stoma and down into the pouch. So eat fruits and veggies, and drink water.
Also, using baby oil or even just vegetable oil, or the sachets of lubricant made for stomas, can also really help the stool to slide down into the pouch more easily, and also slide out of the pouch more easily when you're ready to empty the pouch. I add more oil into the bottom mouth of the pouch about every other time that I empty it.
Oh my! I have tried all those suggested tricks, and it still cakes. I even went as far as filling the inside of the wafer with a barrier ring and topped it off with lubricant. Well, you would think it would slide down, but nothing doing. It happens whether I have a liquid or thick poop. For some reason, it just loves hanging around the stoma. In short, I give up and let happen what happens. They've had this issue from the beginning of time. Apparently, the companies can't come up with a solution. They will take any ideas on how to change it if you have any that work. In the meantime, happy pancaking!
Same here, no amount of lubricant helps. I still use it hoping one day it will. I have to push the stool down the bag almost every time. So frustrating.
Have you tried pouring warm water in the bag, closing it up, sloshing the water/contents around, and then emptying? Obviously, you use your hands to support the weight of the bag while doing it. I do it almost every time I empty cause mine doesn’t slide down unless it comes out as hard pieces, or I get a lot all at once. Mine really sticks around the stoma when I have output while sitting.