Hello all,
I am a new ostomate, only a couple of weeks post ileostomy. I am looking to go out shopping with my family this coming week and wondered what supplies I should take with me?
I usually change my bag once a day, do I need to take the whole spare clothing, pre-cut bag, cleansing spray, wipes, disposal bag etc?
Any advice welcomed, thank you.
Hi T,
Well... new ostomates are always conservative... and usually bring the whole kitchen sink. As you get comfortable and build confidence, you'll zero in on what you really need, or if you need anything at all. But reading your post, I'm assuming you're changing just your bag every day, and not your barrier... right? How many days are you getting out of your barrier before you change that?
If you want to know what you'll need to change your barrier in another location... just try it. I mean walk through it. Grab what you think you need in a bag and go into another bathroom or over the kitchen sink and see if you can walk through all the steps with only what you have in the bag. If not, add those to the bag. Don't assume you'll have running water or a trash can where you have to do an emergency change, and bring what you need for that too. Then as a final test... when you actually do change your barrier... do it with the stuff in your bag. That will be the last sanity check to ensure you'll have everything you'll need... and be prepared for making a mistake or two... like having output right as you go to stick on your barrier and having to prep a new one. Like those Boy Scouts say... always be prepared!
;O)
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Thank you for the advice, that seems a sensible approach - I will give it a go!
Mine is a one-piece drainable bag.
Thanks again x
You don't have to change your bag that often. I used to anywhere between 3 to 5 days with a one-piece. Now that I have a two-piece, it's 5 to 7 days. Everyone's preference is different. I had way too many problems with a one-piece leaking. As far as supplies, I carry two of each supply with me (as stated above). You never know if Mt. Vesuvius is going to erupt in the middle of it all. For disposal, I use black doggie poo bags from the dollar store and they're small enough to fit in my purse and a small pack of flushable wipes. A backup change of clothes in the car wouldn't be a bad idea until you become more comfortable, and I never had to use mine after 2 years with my ileostomy, but I did stay over at a friend's and a leak happened out of nowhere. As time goes on, you'll begin to see when your stoma is more active and plan around it, and you'll become more comfortable and confident. It was hard for me in the beginning, and just know any questions you have, no matter how embarrassing or disgusting you may think they are, feel free to ask.
1 bag folded in half in my pocket... It's served me well for over 30 years now... I have an ileostomy so would only change the bag when out if it was leaking so poo will have already loosened the base so no need for adhesive remover. I can live without a seal until I get home so no need for me to take one of them and toilet paper is adequate to use for an emergency skin clean up... There's no right or wrong way, just what makes you feel confident to get out and about living your normal life again.
When I first got mine, I brought everything!!!! I brought what I call my bathroom bag. A roll of toilet paper, deodorant drops, gloves, and a water bottle. I put those things individually in baggies. Then any type of bag will do, but I like those plastic-type lunch cooler things that have zippers. The reason I bring my own toilet paper is that public restrooms have the toilet paper in those cover-type things, and you have to bend down so low to get to it, and then God forbid if it gets stuck and you can't see the end piece to grab onto. So you're standing there with the end of your bag in one hand and trying to reach down with the other to get some toilet paper that you really can't see.
For my emergency kit, I put in 2 pouches and have them pre-cut and each one in a separate baggie, then some adhesive remover wipes, some folded-up paper towels in a baggie. The emergency kit I pack in a separate bag from my bathroom bag. Usually, a small makeup travel bag will do for the emergency kit. Extra clothes just in case. I'd roll up a pair of leggings and put in a baggie and some underwear and socks and a shirt. All those smaller bags, the bathroom bag, the emergency kit, and the clothes will go into a larger tote bag together.
Now that I have had my Ostomy for a few years, I don't bring all that with me anymore. But I do bring it all on the days I work. Just in case. It has happened at work because I'm there for 8 or more hours sometimes. I've had to change clothes and the whole nine yards.
Being that you are new to this, you might want to bring everything as you see how things go and as you get more used to how things are going when you go out.
I once had to leave a full cart in a store and run out to go home. Lucky that nothing got in my car, but I ran in the house, got into the shower clothes and all, and removed them in the shower. Turned out that I needed a pouch switch to a convex. Now that I'm more sure of how things go, I usually go out with nothing unless it's going to be a few hours.
Hi T,
As Rose Bud said.......you need to be getting longer wear time out of your one piece. Changing every day is eventually going to make your skin angry. Every time you remove and apply a barrier you're irritating your skin, even if it's not red yet. That's just too much mechanical stress on your skin. There should be no reason you can't get at a minimum 3-4 days out of your one piece. If not, something is amiss with your installation. You'd be wise to start working toward longer times between barrier changes. Just a thought.
;O)
I always overpack, so overpacking for ostomy supplies was nothing new for me. My cousins that are my age decided to have their first babies last year, and I've been out of the baby phase for a while, but they suggested I get a diaper bag that looked like a purse because of all the inner pockets, which are also made of waterproof material. When the weather was warmer, I just rolled up a t-shirt dress and kept it in one pocket. I had these J&J baby wash wipes, not diaper changing wipes. Everything I needed for one bag change. A non-profit called Girls with Guts sent me this whole welcome kit with supplies other women found helpful and a bag that says Girls with Guts (my female colorectal surgeon loved it). I kept a bottle of water with added electrolytes in there, apple/banana squeezers, Ritz crackers. One of the ostomy nurses was laughing one day because I'm sitting there while she's doing a bag change and looking at everything, and I was craving salt and reached into my bag for crackers. She said she'd never had anyone have a snack before during a change. That was one thing I loved about the ostomy nurses; they were so good with just rolling with things. I did have issues going through security at different places with my medical scissors that I used for cutting Hollister adhesive, so within the big bag (I told you I overpack), I had a smaller bag that I could throw just a few things into if I was running in somewhere and not going to be there long. The irony was I couldn't get through the screener to get into a hospital with the scissors, but they'd give multiple new pairs once inside the hospital. I accidentally brought a Swiss army knife into a federal building once, so my kids will ask me before we go into different places if I remembered to take the knife out of my purse, so then it became "Mom, did you take your knife and scissors out of your purse?" So if you use scissors for anything right now, just maybe something to be aware of.
I had a little organizer kit that ConvaTec (the ostomy bag company I used) provided. It had compartments for a couple of replacement bags (I also used one-piece appliances), adhesive wipes, alcohol wipes, and skin barrier wipes. I put that in a bookbag along with wet wipes and my measuring cup (I measured my output for nearly the entire time I had my ileostomy because of how inconsistent it was) and some paper towels, and carried that with me when I went out.
Never needed any of it, though. Like most of the other posters said, I only changed my bag every few days. Never sprung a leak while in public, either. If I had to empty I went to the bathroom, found an empty stall, and emptied into my measuring cup or directly into the toilet. Only took a minute.
Best of luck in this new stage of your life. It's not easy but you'll be surprised at how adaptable you can be.
Hollister sent me a little black organizer bag. I just looked and it's still sitting by my printer so guess I didn't use that.
For those saying you should get more wear time than one day... not always true. I have to change daily myself and I've had mine for a few years now. Have tried almost every pouching system out there. Have to remember that some people are sweaters and sweat a lot. Then you have people with oily skin. I wish I could go more than one day.
I am simple. I keep a flange and a bag with a clip in the side pocket of my purse. I do have some Kleenex in my purse. I also have a little bottle of hand sanitizer. I do not bring adhesive powder skin prep. I believe it's an emergency and I should act like it's an emergency. I have had stuff happen in public. I was able to change my flange and my bag quickly, clean up with toilet paper in the restroom, wet the toilet paper with the sanitizer, slap it on, and go to my car. I do think I had leggings and a pair of underwear in my backpack, but I think I just ran to my car and went home. This was during my master's courses. I luckily never had anything happen when I was teaching.
How often you change your bag is up to you. I change once a day usually. The nurses would tell me I should get 2 to 3 days wear, but I tried and it was so smelly and ready to fall off. So once a day, after 24 hours, my bags come off very easily and my skin looks good. If I am going to work or out for the day, I take a very small bottle of M9, flushable wipes, 2 extra bags already cut to my size, underwear, those garbage bags that come in the ostomy boxes, and 2 ostomy barriers and dry tissue or TP. I put it all in a black bag approx 6"× 9" and stuff it in my backpack or purse.
Hi
I always have at least 2 spares in a bag in my handbag. Very rarely needed. If I'm off out for the day, I may put a pair of trousers and pants in the boot of my car. Also, if I'm out for the day, I may put a spare bag in the other side of my pants, so it's next to my body as it sticks better when warm. That's because I don't always want to drain in a public toilet. I'm quick and don't fuss too much when I'm out. If it's not done well enough, I'll do it again when I get home. I use a one-piece and change every morning. Normally, if it's going to leak, it's within an hour of changing because it wasn't warm enough. I get through a lot more when I'm on holiday. I always keep plenty in stock. Don't forget to get a radar key for the disabled toilets, more room and a washing basin in there.
I usually do not carry anything if not too far from my car. In which I have a kit. When I go some distance from my car, I carry a small black ladies' shoulder bag with my kit over my shoulder under my coat.
After six years with a stoma and bag, I honestly take nothing with me. However, at work, I do have my private stash.
And I do have a small Convatec travel bag on the ready for any overnight last-minute outings, but nope. Completely confident my bag won't leak. Seven days max, five days play it safe and change it.
I pre-date my bag.. April 12.. ..4-12.. I know I have a minimum of five days to change it from then.
Of course, nightly inspections go without saying.
To the poster-writer saying she brings toilet paper because the wall unit toilet paper dispenser is plastic-covered and low..
Yes.. indeed, how about when the paper is stuck way up inside? Unreachable?
Let me tell you, I become Superman and rip that sucker off the wall to get my paper.
Reporting it to the manager, I just say "It fell off," but I got my T.P.
Let's not forget, as you are fiddling around.... the toilet automatically flushes too.
I could care less what people think seeing my feet facing the wall instead of the door in a stall.. but that odor.... is.... embarrassing...
Take two of everything your appliance requires in case you drop one thing.
All right, this is gonna be fun. Please explain knickers, briefs, and smalls - is that what Americans would refer to as underwear?
Thanks for the advice, I am only changing my bag daily at the moment as I still have stitches around my stoma due to the very recent surgery.
Those little stitches can be a big pain during the healing process. Are yours dissolvable ones? (Is "dissolvable" the right word choice? I feel like maybe it's called something a little different)
Oh, I have another question, non-clothing related. I was thinking about this the other day at the hospital. I was walking across a skyway and noticed that everyone walks on the side of the direction they are headed, the same as we drive on roads (so right side). And I was wondering why we do that when we walk if it's some unspoken rule? So in the UK, do y'all walk on what would be your left side? If my question doesn't make sense, someone else can jump in and word it better than I. Ha.
I've had an ileostomy for 7 years and I change my one-piece convex Coloplast every 3rd day. I am very surprised that you and some others I've read here have to change theirs daily. I had so many problems with leaking until I tried a couple of things. One, I use Skin Tac Wipes after I have cleaned my stoma (very sticky), then I heat up the glue on the flange with my blow dryer to activate the glue, then place it on me. Now I just don't leak or haven't in a very long time. Hope that helps you out as well as it did for me. As for scent, I'll use Devrom tablets if I'm going out to someone's home, restaurant, or vacation. They take the scent away from internally. Good luck with things.
It doesn't hurt to be well prepared. So, I would take 2. To be on the safe side, eat light and enjoy yourself. That's my 2 cents.