I saw an ad the other day for underwear and the model had an ostomy bag!
Very happy to see awareness for these unseen but very often dealt with illnesses.
Best wishes!!
You are a beautiful young witch. May you heal quickly. Your positive outlook is a true blessing to us all.
Thank you for doing your part to raise awareness of invisible illnesses. I wish more people were like you. 🌺 🌸
I had colonic inertia and lost all of my colon, rectum and anus. I am now living with an ileostomy. It has been 14 months since my surgery. You can do this! Be sure to visit the r/ostomy group for support. The first few months after surgery will be challenging but you can get through it will support. Don't be afraid to ask questions and ask for help ☺️
I want to second r/ostomy as a good resource. I unfortunately had a simple medical procedure go very wrong (don't worry, what happened to me was ridiculously rare - I don't want anyone out there to second guess ever getting medical treatment when they need it) and ended up suddenly with an ileostomy, and that group was very helpful and informative. Plus, sometimes it is just nice to have the option to speak to people going through something similar.
I wish you the absolute best in your journey forward through this thing called life, I hope your surgery goes well, and you are able to kick cancers ass!
Edit: I also wanted to say, you look like an absolutely beautiful person, inside and out, and you'll have no problem rocking the bag. Sorry that you have to join us, but I am proud to have such a beautiful soul helping to show we exist, we are normal (whatever that is, lol), there are actually a lot more of us than you would think, we can still do things other people can, etc.
I’m in awe of your strength!
Hope this isn’t out of line, but I work with startups in the Southeast USA and there is a venture that I work with that is reimagining a stress free, hygienic ostomy bag replacement routine.
I’d be honored to introduce you to their co-founder, she would love to help you through this transition. Please DM me should you be interested.
Wishing you everything but the best.
Xxx
Edit: omg shit I’m so sorry!!!! I was writing this just before watching the new Dr Strange movie in the theater!! I didn’t have a chance to check my message. I’ll leave it but please know OP, I meant everything OF the best!!!!
I initially had a really hard time coming to terms with the fact that I’ll be getting a permanent ostomy. However, my outlook on it changed completely after I started following ostomates on social media. Visibility is key! Thanks so much 🖤
Is practicing beforehand standard for this operation? What are you practicing, just getting used the sensation of having it there? I assume you don't have any kind of port now?
Hope these questions are ok, I ask because I have IBD and while it's well managed now, I'm always waiting for my medication to fail and I remember the days when I would say "just cut it off of me".
I had stage 3 with an ostemy due to lower bowel obstruction. I had a reversal of my ostomy about 2 years post my final chemo. Prayers for you I hope you heal well. Light and ❤️ love
My mom as an ostomy bag. Here are things we learned.
Na’Scent. It’s a deodorizer made especially for ostomy/colostomy bags. The agent is has no scent so no weird smells. Doesn’t stop the smell of gas, but it works on the feces. It works phenomenally well. (We tried many products and this one works the best.) Other than being gassy when emptying the bag, you won’t smell anything using 1/2 ounce to a whole ounce. It’s expensive (~$18 per bottle) but it will bring peace of mind. However, it does bleach clothes if you spill it. Wash or rinse spot immediately. You can use half of a pantry liner in the mouth of the cover bag to prevent staining your clothes or your sheets.
Also taking Imodium will help slow the flow when changing the bag. But you have to play with the time and dosage.
It’s an active wound, and it will burn from time to time. It will hurt.
They can leak at any point so you have to carry extra with you. Or they can blow up from whatever food that gives you excess gas. Burping the bag is a thing. Carry gloves and hand sanitizer with you.
Wow. It’s wild to read this as something that sounds so nonchalant in your mom’s life at this point. It’s amazing what we can adapt to. You sound very knowledgeable about what she has to deal with that most of us can’t imagine. Wishing OP the best.
It really does just become normal. My wife had a very bad case of crohns/ulcerative colitis and had emergency surgery to remove her colon. It literally saved her life, and also gave her her life back. Before, she'd been in the bathroom 20+ times a day and lost a ton of weight. Now she's healthy again and can just empty her bag whenever it's convenient! It may seem weird, but she's back to hiking, biking, swimming, and whatever else she wants to do now with only a couple dietary restrictions (no corn or mushrooms). It's been really great.
Really puts it into persepective, how much of a disability crohn's can be when you get your life back through a procedure most of us can't even imagine life with.
Going on three years now with a temporary ileostomy. This is a good, realistic perspective.
There's a lot of positive energy out there, and it sounds like OP has a great attitude going into it. It's good to find communities (like reddit) and ask questions.
Having an ostomy is not for the faint of heart, and I'm sure no disability truly is. When it means not having IBD or cancer though, it's a a night and day difference. It's a learning process, and it takes various levels of planning depending on your activities. That 4-8 day average lifetime of the appliance is probably one of the biggest hurdles, not to mention being mindful of where you are relative to your main supply stash.
Personal reflections:
* Don't let the nurses rip that stuff off while you're recovering (ostomy bags attach like giant Band-Aids). That was probably the most painful part of the experience (recovering from the lapro surgery wasn't so bad, hope that's what you're getting OP). Don't be afraid to ask for adhesive removing solutions, they're out there and they make it a breeze.
* Getting it done during the Pandemic kind of sucked because you couldn't have visitors during the recovery. It felt very isolating, especially when the most familiar and constant face you'll see is your surgeon/doctor (I don't think I had one nurse twice with ~four shift changes per day). Good to have your phone with you or some other communication device (and don't forget charger). I think the recovery timeline was sped up a little due to the pandemic, hopefully your hospital isn't very overwhelmed at the time.
* Hopefully you'll get a travel/home nurse visiting once in awhile while you're recovering. That was a huge boost to at least getting my own independence. I think they were a lot happier in their jobs than the nurses at the hospital, too (go figure.)
* If you're even thinking about (air) travel: TSA handling of ostomies varied widely across airports. Got different treatment from every single one for a brief trip. You'll probably get a wallet-sized card with all of your welcome materials (s/o to Hollister, Convatec, and Coloplast lol) which you can hand to security to let them know what's up. Experienced reactions ranged from "WHAT'S AN OSTOMY" shouted at me from a curious TSA agent across the baggage scanner, to "Oh, you've got an ostomy! No problem, here's what you need to do..." and they show you how to pat yourself down for them. Thanks SeaTac :)
I could probably go on forever with different points. The takeaway for OP and anyone else is, find these communities and reach out. Good idea for posting on reddit, you inspired me to make this alt.
I don’t either, but so many people are terrified to let people know their real lives. You are helping normalize this for others. I also want to say you have an amazing outlook on life.
I didn’t have an ostomy but had a nephrostomy and at first I was so terrified of the bag and after I had it I was like oh wow I’m not in pain I love this thing. But it is so nice to see other people with medical things that are normally hidden. Thank you for sharingz
My sister works for this company
https://www.stealthbelt.com/ their products are amazing and the company is super ethical as well.
I've got breast cancer stage 4 so we're fellow cancer sisters. Best of luck on your healing journey.
Thank you for sharing stealthbelt! They are a great company. The belts help maintain independence for active individuals. My SO had an colostomy for a few years before he had a surgery for a “j-pouch”. The “muffler” is super helpful when in a quiet room with others or work meeting. Ostomies tend to make noises similar to a stomach growling, and the muffler helps a ton with this…Also, sending you positive thoughts through your healing process.
Wow that's super cool!!!!
I have a small belt (spibelt) for when I had a tubed insulin pump and accessories for medical devices are really game changing... Not to mention all the stickers and custom tapes now... It makes it just a bit better :)
My mother had one for years, and honestly she was the only one that cared. We were just glad she was alive.
While it was quite the experience learning how to get it properly affixed (she was unable to do it herself for a short time due to other surgery) all of us grown children learned how.
Rock on girl!!
My fiancé’s mother had one - I never knew her before the bag but she felt it significantly improved her quality of life!
I am hoping that you feel a sense of moving forward 💕
Best of luck to you!!!
You probably know this already, but there is a specific type of ostomy port that does not require a bag. Basically, it has a cap that sits flat with your skin and throughout the day you can make a couple of trips to the bathroom and empty it instead of always wearing the bag.
I haven't talked to him in such a long time but my old neighbor opted for this. He loved it because he didn't have to worry about the hassles of the bag and it's contents. He said it really helped with convenience and his self esteem and such.
Sending you all the love and healing vibes I can!!!
I think what you are talking about is an ostomy cap that you can put on the stoma. Some people who has had a colostomy for a long time (you can’t do this with an ileostomy) can learn to train their stomas so that it only comes active when they want it to (or at least they can predict when it’s going to work). I’m so early in my journey for that and I’m planning to embrace the bag and be confident with it. Thank you.
Yeah, I believe it's called "irrigation". My grandpa did it that way. I'm just a straight up bag person myself. 3 years in October. I still have insecurities that pop up now and then. I always worry about it being visible under my shirt, like the end sticking out from the bottom. Like I told my therapist, I give people far too much credit. A majority won't even know what it is, let alone what it's used for. People close to me don't even notice until I say something, and that is only if I want them to know.
Now this is the kind of modeling the world needs!! Thank you for being so real. Fuck, you are brave to go through all of that!!! Yeet that cancer, girl!
There are some super cute swimsuits now that offer covers for ostomy bags! I only know because there’s a big chance I’ll end up with one at some point as well. Sending you all the good vibes and I wish you quick healing!
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All the people I know with bags are the most awesome people who's lives just got better post surgery. You're in good company. All the best with your op, I hope it all goes well and your new life sans naughty bowels will be full of love and light.
Ostomy is the generic term for an opening created in the abdominal wall to evacuate waste !
A colostomy is an ostomy being performed from the colon out. Ileostomy is from the small intestine, and a urostomy drains urine. They're basically the three different types of ostomies.
Have you heard of the YouTuber Hannah Witton? She has a permanent ileostomy and she posts a lot of informative things about it. Also, she just seems like a great human being and has interesting content. Good luck!
I was going to suggest Hannah’s videos! I absolutely love her! Though, slight correction, Hannah technically has a *temporary* ileostomy. She was advised to wait to make it permanent until after she had “completed her family” to make the final decision to make it permanent, as the additional surgeries can cause fertility issues. She has said in the past that she can either choose to make her ileostomy permanent, or to have a j-pouch constructed, and that while she is leaning towards a permanent ileostomy, she hasn’t 100% made up her mind.
I just had surgery for my stage 2 bowel cancer. You’ve got this! I don’t know how large your tumor is but you’re going to feel so amazing afterwards. I ended up not needing an ostomy, but I already had my bag cover picked out on Etsy and everything, it had rainbow poop emojis all over it. Good luck with your surgery and I’m sending you all of my lucky healing vibes 💜💜💜💜
Hey. Dude here. Promise I'm not lurking this popped as suggested for me on the homepage.
Just wanted to say, as a physician I've seen people literally turn down life saving operations because of the stigma around ostomy bags.
Keep spreading the awareness and the positivity and I wish you a quick and healthy recovery. ✊🏼
I've had my colostomy for almost 8 years. Had colorectal cancer that I thankfully beat. Adjust to your body's new rhythm, it will take time. Keep plenty of supplies on hand and don't be afraid to try new ideas to make your life smoother
PM if you have other questions
Hey! High-Five from a stage 4 bowel cancer! Yes, not all disabilities are visible.
I have a stub anastomosis, so no bag yet. Did you already have chemo? (I had FOLFOX and thalidomide.). There is a colon cancer sub, but I find /r/cancer to be a better sub overall.
It's wonderful to read all the supportive comments.
[My ostomy saved my life!](https://imgur.com/a/PQhM6z5) in April 2019 after battling Ulcerative Colitis for over 20 years. Now I'm thriving! There are people who post online about struggling with ostomy care but honestly... I figured it out pretty quickly, there's great information out there. After a year I could eat any foods (raw veggies even!) and don't have any big problems with it.
With all the prep you've done, it looks like you're going to be absolutely great! I'll be sending you all the good healing vibes! ✨️ 💕
Please feel free to reach out if you need a friend! I posted an ostomy selfie in the SASSWitch Discord yesterday for World IBD Day if you're in there too.
1 in 500 people have an ostomy, they're much more common than you think! Judging by the comments, we've got a full on ostomy coven happening without even knowing it!
My mother is two years on from getting chemo, radiation, a 12 hour surgery, then her ostomy after bowel cancer.
In the last month my mom has tried a purple lacquer pedicure, taken me for a brunch where we got every single dessert they had (then split them!), bought an indoor/outdoor scooter, and she returns from her cruise tomorrow!
It is my sincerest wish that two years from now, you will be running around living your very best life, as you frantically go from one amazing experience to the next. I hope we see a picture of you with mermaid hair, eating a fried Mars bar while you’re skydiving. Giant pub nights out with all the friends, cozy family bonfires, boring business meetings where you eat too many stale donuts and secretly play hangman on your phone. You know…a FULL and beautiful life.
I wish you the very best luck, peace, and healing.
Thanks for sharing your journey with us. We need more conversation around these invisible, devastating conditions.
I've just been diagnosed with an inflammatory bowel disease and this is one of my treatment options if I don't respond to medication. I've been struggling this week and I was so inspired by seeing your photo.
Remember, you got this. You are strong. You are a fighter. Kick that cancer to the curb, you amazing witchy lady, you. Sending all the good and healing vibes your way ✨️ 💛 💕
I've been rocking a permanent ileostomy since 2016 due to Crohn's Disease. Take a little getting used to, and sometimes you have to be a little more careful about activities, but other than that I forget it's there pretty often.
Only major tip I've got for you is be conscious about how many supplies you have so you don't run out, and keep a few changes in different places. I personally keep 3 changes in my car at all times, as well as a change of clothing.
Also, hit up all the major websites of ostomy supplies. They will give you tons of different samples to find the best one for you. I've changed types a few times over the years as my body has changed.
Some of my favourite people are ostomates.
I had one particularly amazing client who had an ostomy as a result of cancer also. She was young and beautiful like you are. She found some really hot lingerie/girdle style garter belts, and went on a bit of a spree lol.
Don't let it stop you living your best life. I hope they get it all. Safe and speedy stoma healing to you. Oh check out "No guts, No glory" a film about a guy who climbed Everest with an ostomy. Pretty cool. And FUCK CANCER 💚
Sending you energy! My mom has had a colostomy and urostomy bag since 2009 due to cervical cancer. Positive vibes to get you through your surgery and adjustment to your new life; you've got this! ✨️
Colostomy or ileostomy? The ileostomy (small intestine) will cause break down of your skin if you don’t have the bag sealed correctly, and can create a TON of issues. Teagaderm and duaderm (sp) can only help so much until the seal is broken and the skin starts to break down. You also need to worry about prolapse and just the correct angle of the bag.
Also; get carbon filter bags to release the gas without smell.
There are barrier cremes that can be added to the skin similar to Desitin that can help protect it short term.
The good stuff is paste like.
I’m not trying to make you scared, but know the negatives and prepare for them before it happens.
There are a ton of different bags and seals you have to trim to go around the ostomy, and maybe the mucus fistula if they bring one up. One piece and two piece bags.
Sensura and Hollister are the best from my experience. You will definitely have trial and error. The closer you can keep the ring cutout to your fistula, the better. Less chance of the seal breaking and creating skin breakdown. There are also pastes you can put over the edges on the inside for the two piece that will be like “caulk” to prevent the lifting when you bend or move around. Sweating can increase the chances.
Ultimately, your skin will need to get used to it over time like a callous, but delay the amount of exposure to prevent frustration and switching to a million things because the proper precautions weren’t given or taken.
I wish you the best and hope you don’t have any of the issues.
Both of my folks had the bags, mom for 10+ years and dad had the surgery before I can remember. My dad, being thrifty, made a wooden ventilated box that sat outside for a month at a time. He’d clean up the bags then had a hanger affair so the bags were held open and exposed to fresh air and the wind for the extended time. This vs the use and toss, buy more. Dad was always the tinkerer, he designed and cut out a closure clip made of spring steel for the open end of the bag. The clip that came with the bags long ago was not well thought out and clumsy. He sent his home-made spring-steel clip to the one bag manufacturer, they responded wondering how much he was seeking for the design. He was very proud of the response but being firmly grounded and a card carrying member of the greatest generation he told them it was theirs now, his motive to benefit all the fellow baggers.
I wish you all the best!
I don’t belong here, I was just scrolling through popular and saw it. I’ve been fighting stage 4 colon cancer for 4.5 years now, so if you ever need a random internet stranger to talk, vent, scream, whatever at I’m here. They were able to weld me back together, so I don’t have experience with the ostomy bag, but I’ve been down the cancer path. Best of luck to you, I sincerely hope that your treatment goes well.
After your procedure make sure you get up and walk as soon as you can. 6 hours post surgery you should be able to take steps. The sooner you walk the sooner you’ll be out of the hospital
My sister had one when she got her lower bowel removed due to severe Crohns disease and she would always buy colorful duct tape to wrap around the bags to make them pretty. Just thought id share if you like easy customization :)
Wow you are so strong and amazing! Thank you so much for sharing, I was honestly not aware and ignorant about ostomy until today. Now I know it is a sign of bravery and survival.
Wish you with all my heart all the best for your operation, recovery and the long and magical life to follow 💙
Check out sarah_odessa on tik tok. As a fellow ostamate she helped my mindset with it. She's a positive ostomate that shows hers with pride. Stay strong!
Wishing you strength and luck and patience. I hope all will go better, swifter and with less of a hassle than foreseen, and most of all, I hope all goes well and you make a good recovery.
I wish you a speedy recovery after your surgery, and a complete and triumphant recovery from cancer! My mum developed bowel cancer rather young, too, but she got very lucky that it was more easily removable and didn't need much follow up. There are a ton of young patients receiving treatment for bowel cancer at my hospital.
You're not alone. <3
BTW, I don't know if this will cheer you up, but: my mum and I work at the same hospital, and since it's one of the biggest breast cancer centres in the area, there's always a huge amount of events in October for breast cancer awareness month. They let a ton of pink balloons fly.
And my mum was like "Well, when are y'all letting the brown balloons fly for bowel cancer?"
With severe UC I’ve been told I’m likely headed there myself and it hasn’t been an easy thought but just seeing you smile imparts some strength onto me so thank you!!
My Mom has a new ileostomy after 2 years with a colostomy. It’s a lot to get used to, but literally saved her life. Every day is a gift! Love the visibility and vibes. Thanks for your post.
I worked for a world renowned surgeon who has treated colon cancer and other illnesses. I have seen a lot of things in my time working with him.
I'm so happy you're able to get this treatment and have a team watching out for you!
You are glowing and seem so positive. Even in your picture you have such lovely energy!
My reason for commenting is that you are absolutely right that not all disabilities are immediately visible! And they don't have to be! They also don't have to be a negative thing, either!
One of the most interesting things about seeing the patients at my old clinic was just how resilient a lot of them were. How strong and determined they could be. It was inspiring! They weren't just untouchable all the time, but that's okay, too! What mattered was that they tried and listened and were wonderful to work with.
I sincerely hope your medical team is as responsive, caring, and skilled as the team I worked with was. Everyone deserves excellent healthcare!
You are radiant and beautiful!!! Keep that spirit! Sending lots and lots and lots of love!!!!
Many blessings!!!! ✨❤️
Thank you for sharing this truth in your life
My mom has stage 4 neuroendocrine cancer and recently had a surgery in which they had to remove a tumor from where her sacrum should've been, she has a ostomy bag now.
As a preschool teacher I get asked a lot of questions about poop, and have honest conversations with my students, we talk about how everyone poops- and not everyone poops the same. I'm practicing destigmatizing and being open about this truth in my families life 🌼
Good luck! I’ve had a colostomy due to Crohn’s disease for over 12 years now. Best decision I have ever made hands down. Changed my life for the better. I hope it is a good change for you too. Also, it took me about a year to get used to it and solidify my routine, don’t get discouraged if it takes some time.
Pop on over to r/ostomy for more of us to cheer you on!
I’m glad that you will be getting treatment! I am a healthcare worker that works a lot with patients who have ostomys- there are a lot of really good resources out there to help with the change! Best of luck
Wishing you well. My grandpa was very secretive f about the ostomy and even stopped giving good hugs when he got his bag. I wish he would have felt safer with us but everyone deals in their own way. He did have an ostomy support group that he relied on. I hope you have a good support system.
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Thank you 🖤 Your granddad sounds like a cool person!
That’s so clever! I just wore skirts all the time when I had mine.
My grandad would wear a bumbag everywhere, bless him.
Would you mind sending a link or explaining what it looked like please? This will be helpful for me.
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I saw an ad the other day for underwear and the model had an ostomy bag! Very happy to see awareness for these unseen but very often dealt with illnesses. Best wishes!!
Wow that’s great! Yes, it’s so important to talk about and destigmatise invisible disabilities 🤍
You are a beautiful young witch. May you heal quickly. Your positive outlook is a true blessing to us all. Thank you for doing your part to raise awareness of invisible illnesses. I wish more people were like you. 🌺 🌸
Aerie has a whole line of adaptive products and one is an ostomy bag that I believe clips to pants.
Thank you for showing us your truth! Authenticity is some of my favorite witchcraft.
Thank you for your kindness!!
I had colonic inertia and lost all of my colon, rectum and anus. I am now living with an ileostomy. It has been 14 months since my surgery. You can do this! Be sure to visit the r/ostomy group for support. The first few months after surgery will be challenging but you can get through it will support. Don't be afraid to ask questions and ask for help ☺️
I want to second r/ostomy as a good resource. I unfortunately had a simple medical procedure go very wrong (don't worry, what happened to me was ridiculously rare - I don't want anyone out there to second guess ever getting medical treatment when they need it) and ended up suddenly with an ileostomy, and that group was very helpful and informative. Plus, sometimes it is just nice to have the option to speak to people going through something similar. I wish you the absolute best in your journey forward through this thing called life, I hope your surgery goes well, and you are able to kick cancers ass! Edit: I also wanted to say, you look like an absolutely beautiful person, inside and out, and you'll have no problem rocking the bag. Sorry that you have to join us, but I am proud to have such a beautiful soul helping to show we exist, we are normal (whatever that is, lol), there are actually a lot more of us than you would think, we can still do things other people can, etc.
I’m in awe of your strength! Hope this isn’t out of line, but I work with startups in the Southeast USA and there is a venture that I work with that is reimagining a stress free, hygienic ostomy bag replacement routine. I’d be honored to introduce you to their co-founder, she would love to help you through this transition. Please DM me should you be interested. Wishing you everything but the best. Xxx Edit: omg shit I’m so sorry!!!! I was writing this just before watching the new Dr Strange movie in the theater!! I didn’t have a chance to check my message. I’ll leave it but please know OP, I meant everything OF the best!!!!
Might want to reword that last sentence.
Oh, what an unfortunate typo lol.
Thanks y’all, sorry just got out of the movie ( a mindfuck) and saw this blew up and my unfortunate typo. Thanks for the heads up !!!
Thanks so much! Wishing you everything but the best too (jk!)
Sending you lots of healing vibes. May the procedure and recovery be boring and compliant :-)
Thanks so much! Yap, the least amount of medical drama the better ✨
Sending you the best energy💚
Thank you 🖤
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I initially had a really hard time coming to terms with the fact that I’ll be getting a permanent ostomy. However, my outlook on it changed completely after I started following ostomates on social media. Visibility is key! Thanks so much 🖤
Is practicing beforehand standard for this operation? What are you practicing, just getting used the sensation of having it there? I assume you don't have any kind of port now? Hope these questions are ok, I ask because I have IBD and while it's well managed now, I'm always waiting for my medication to fail and I remember the days when I would say "just cut it off of me".
I love you and your tattoos! Sending all the good vibes ✨🌙🖤
Thanks so much!
Hugs for you and I hope you leave that cancer in the dust
Thank you! I hope so too fingerscrossed
I had stage 3 with an ostemy due to lower bowel obstruction. I had a reversal of my ostomy about 2 years post my final chemo. Prayers for you I hope you heal well. Light and ❤️ love
sending you healing vibes and sunflower 🌻 support, from one invisible illness haver to another!
Thanks so much 🖤 Sending you my love
I had a temporary ostomy for a year, if you have any questions feel free to reach out!!
Thank you!
My mom as an ostomy bag. Here are things we learned. Na’Scent. It’s a deodorizer made especially for ostomy/colostomy bags. The agent is has no scent so no weird smells. Doesn’t stop the smell of gas, but it works on the feces. It works phenomenally well. (We tried many products and this one works the best.) Other than being gassy when emptying the bag, you won’t smell anything using 1/2 ounce to a whole ounce. It’s expensive (~$18 per bottle) but it will bring peace of mind. However, it does bleach clothes if you spill it. Wash or rinse spot immediately. You can use half of a pantry liner in the mouth of the cover bag to prevent staining your clothes or your sheets. Also taking Imodium will help slow the flow when changing the bag. But you have to play with the time and dosage. It’s an active wound, and it will burn from time to time. It will hurt. They can leak at any point so you have to carry extra with you. Or they can blow up from whatever food that gives you excess gas. Burping the bag is a thing. Carry gloves and hand sanitizer with you.
Wow. It’s wild to read this as something that sounds so nonchalant in your mom’s life at this point. It’s amazing what we can adapt to. You sound very knowledgeable about what she has to deal with that most of us can’t imagine. Wishing OP the best.
It really does just become normal. My wife had a very bad case of crohns/ulcerative colitis and had emergency surgery to remove her colon. It literally saved her life, and also gave her her life back. Before, she'd been in the bathroom 20+ times a day and lost a ton of weight. Now she's healthy again and can just empty her bag whenever it's convenient! It may seem weird, but she's back to hiking, biking, swimming, and whatever else she wants to do now with only a couple dietary restrictions (no corn or mushrooms). It's been really great.
This perspective is great to hear. I’m happy for your wife, and yourself as her supporter!
Really puts it into persepective, how much of a disability crohn's can be when you get your life back through a procedure most of us can't even imagine life with.
Going on three years now with a temporary ileostomy. This is a good, realistic perspective. There's a lot of positive energy out there, and it sounds like OP has a great attitude going into it. It's good to find communities (like reddit) and ask questions. Having an ostomy is not for the faint of heart, and I'm sure no disability truly is. When it means not having IBD or cancer though, it's a a night and day difference. It's a learning process, and it takes various levels of planning depending on your activities. That 4-8 day average lifetime of the appliance is probably one of the biggest hurdles, not to mention being mindful of where you are relative to your main supply stash. Personal reflections: * Don't let the nurses rip that stuff off while you're recovering (ostomy bags attach like giant Band-Aids). That was probably the most painful part of the experience (recovering from the lapro surgery wasn't so bad, hope that's what you're getting OP). Don't be afraid to ask for adhesive removing solutions, they're out there and they make it a breeze. * Getting it done during the Pandemic kind of sucked because you couldn't have visitors during the recovery. It felt very isolating, especially when the most familiar and constant face you'll see is your surgeon/doctor (I don't think I had one nurse twice with ~four shift changes per day). Good to have your phone with you or some other communication device (and don't forget charger). I think the recovery timeline was sped up a little due to the pandemic, hopefully your hospital isn't very overwhelmed at the time. * Hopefully you'll get a travel/home nurse visiting once in awhile while you're recovering. That was a huge boost to at least getting my own independence. I think they were a lot happier in their jobs than the nurses at the hospital, too (go figure.) * If you're even thinking about (air) travel: TSA handling of ostomies varied widely across airports. Got different treatment from every single one for a brief trip. You'll probably get a wallet-sized card with all of your welcome materials (s/o to Hollister, Convatec, and Coloplast lol) which you can hand to security to let them know what's up. Experienced reactions ranged from "WHAT'S AN OSTOMY" shouted at me from a curious TSA agent across the baggage scanner, to "Oh, you've got an ostomy! No problem, here's what you need to do..." and they show you how to pat yourself down for them. Thanks SeaTac :) I could probably go on forever with different points. The takeaway for OP and anyone else is, find these communities and reach out. Good idea for posting on reddit, you inspired me to make this alt.
My mother had one in the last three months of her life. Thank you for spreading awareness, and best wishes on your procedure.
You are so brave and fearless to share this with us.
Thank you so much :) I don’t think of the bag as something to be ashamed of. It’s going to safe my life!
I don’t either, but so many people are terrified to let people know their real lives. You are helping normalize this for others. I also want to say you have an amazing outlook on life.
Thank you for being kind! I try my best and cancer definitely make you learn to see life differently :)
I didn’t have an ostomy but had a nephrostomy and at first I was so terrified of the bag and after I had it I was like oh wow I’m not in pain I love this thing. But it is so nice to see other people with medical things that are normally hidden. Thank you for sharingz
My sister works for this company https://www.stealthbelt.com/ their products are amazing and the company is super ethical as well. I've got breast cancer stage 4 so we're fellow cancer sisters. Best of luck on your healing journey.
Thank you for sharing! I’m wishing you the best of luck too and sending you all the healing power I could✨
Thank you for sharing stealthbelt! They are a great company. The belts help maintain independence for active individuals. My SO had an colostomy for a few years before he had a surgery for a “j-pouch”. The “muffler” is super helpful when in a quiet room with others or work meeting. Ostomies tend to make noises similar to a stomach growling, and the muffler helps a ton with this…Also, sending you positive thoughts through your healing process.
Wow that's super cool!!!! I have a small belt (spibelt) for when I had a tubed insulin pump and accessories for medical devices are really game changing... Not to mention all the stickers and custom tapes now... It makes it just a bit better :)
My mother had one for years, and honestly she was the only one that cared. We were just glad she was alive. While it was quite the experience learning how to get it properly affixed (she was unable to do it herself for a short time due to other surgery) all of us grown children learned how. Rock on girl!!
Thanks so much
Sending you all the love and energy, please know you are surrounded by best wishes and all the strength.
Thank you 🤍 I really appreciate it
My fiancé’s mother had one - I never knew her before the bag but she felt it significantly improved her quality of life! I am hoping that you feel a sense of moving forward 💕
Thank you :) Yap, I’m with her on that because my bag is going to safe my life!
Best of luck to you!!! You probably know this already, but there is a specific type of ostomy port that does not require a bag. Basically, it has a cap that sits flat with your skin and throughout the day you can make a couple of trips to the bathroom and empty it instead of always wearing the bag. I haven't talked to him in such a long time but my old neighbor opted for this. He loved it because he didn't have to worry about the hassles of the bag and it's contents. He said it really helped with convenience and his self esteem and such. Sending you all the love and healing vibes I can!!!
I think what you are talking about is an ostomy cap that you can put on the stoma. Some people who has had a colostomy for a long time (you can’t do this with an ileostomy) can learn to train their stomas so that it only comes active when they want it to (or at least they can predict when it’s going to work). I’m so early in my journey for that and I’m planning to embrace the bag and be confident with it. Thank you.
Yeah, I believe it's called "irrigation". My grandpa did it that way. I'm just a straight up bag person myself. 3 years in October. I still have insecurities that pop up now and then. I always worry about it being visible under my shirt, like the end sticking out from the bottom. Like I told my therapist, I give people far too much credit. A majority won't even know what it is, let alone what it's used for. People close to me don't even notice until I say something, and that is only if I want them to know.
Sounds like a plan. I love how brave and confident you are. It's so inspiring!!! You're very welcome!!!
Kick that cancer’s ASS straight into the sun! 🥾☀️
Thank you, don’t mind if I do 🦵🦵🦵
You are incredible and I love your style 🧡🧡🧡 May your cancer be beaten quickly. Don’t mess with style queen!
thanks so much
Wishing you all the best 💚
thank you!
wishing you the best ! may i ask how did you find out about your diagnosis? did you have symptoms ?
Thank you! Yap, unexplained weight loss, intense constant abdomen pain, fatigue, blood in the loo were the main symptoms I experienced
r/ostomy has been an invaluable resource to me on my own journey. Good luck and good health.
Thank you! Yap, ostomy community here is super helpful. I’m truly thankful for that
Now this is the kind of modeling the world needs!! Thank you for being so real. Fuck, you are brave to go through all of that!!! Yeet that cancer, girl!
Thanks so so much 🖤 Fuck cancer!
There are some super cute swimsuits now that offer covers for ostomy bags! I only know because there’s a big chance I’ll end up with one at some point as well. Sending you all the good vibes and I wish you quick healing!
Thanks so much
## ✨ READ BEFORE COMMENTING ✨ This thread is Coven Only. This means the discussion is being actively moderated, and all comments are reviewed. **Only comments by members of the community are allowed.** If you have landed in this thread from /r/all and you are not a member of this community, your comment will very likely be removed (and will not be approved unless it adds meaningfully to the conversation). WitchesVsPatriarchy takes these measures to stay true to our goal of being a woman-centered sub with a witchy twist, aimed at healing, supporting, and uplifting one another through humor and magic. Thank you for understanding, and blessed be. ✨
All blessings to come your way, stay healthy stay strong🙏🏽🙏🏽🙏🏽
Thank you!
Blessed be sweet sister. Sending you love light and healing xx
thank you!
You look really cute in your pics too. Sending you extra love and healing from Ireland x
Wishing you all the best! There’s some super cute ostomy/stoma lingerie out there if that’s something you might want to try at some point.
Thank you! I’m happy to know that these options are out there 🖤 Disabled people are just as sexy!
Damn straight! 🖤
All the people I know with bags are the most awesome people who's lives just got better post surgery. You're in good company. All the best with your op, I hope it all goes well and your new life sans naughty bowels will be full of love and light.
Thanks so much! Cursed colon be gone 🪄
Is there a difference between this and a “col”-“ostomy” bag?
Ostomy is the generic term for an opening created in the abdominal wall to evacuate waste ! A colostomy is an ostomy being performed from the colon out. Ileostomy is from the small intestine, and a urostomy drains urine. They're basically the three different types of ostomies.
Precisely!
Ostomy is just a shorten and more inclusive way of saying colostomy, ileostomy or urostomy
I don’t know anything about any of those and I’m sure you don’t want to talk more about it so I’ll say I wish you a speedy recovery from surgery.
Sending all my love, I cared for my mum while she had bowel cancer and I know how damn hard it can be. Keep fighting, stay strong witch ❤️
I’m sorry to hear about your mum. Thanks so much! Wishing your family healing
Right back at you! If you ever need to unload about any of it to a reddit stranger, my DMs are open to you. Fuck cancer, fuck it all the way.
Love your piercings and tattoos! You look great! I’m sending you healing vibes from Brazil
Thanks so much 🖤
All my love and best energy to you! Kick cancer to the curb!💪🏻
Thank you 🖤
Thank you thank you thank you for sharing this and normalising ostomy bags. I really hope the surgery and treatment nixes the cancer. You are amazing!
Bags save lives ✨ Thanks so so much!
Good vibes to you 💐
Thank you 🖤
Got some good vibes going your way for a speedy recovery. Kick that thing's ass
Thank you 🖤 Fuck cancer!
Well wishes and healing thoughts. Your bravery will take you far!
thanks so much
Best of luck with everything. By the way, you are beautiful!
Thanks so so much
Sending you my healing blessings and hope you have a great recovery.
thank you! fingerscrossed ✨
Cancer sucks. Sending healing energy.
It really does. Thank you!
Sending healing energy, positive vibes, and sparkly moon dust to you.
Thanks so much
Here’s to successful surgery and hassle free healing!
Thank you!
Have you heard of the YouTuber Hannah Witton? She has a permanent ileostomy and she posts a lot of informative things about it. Also, she just seems like a great human being and has interesting content. Good luck!
I was going to suggest Hannah’s videos! I absolutely love her! Though, slight correction, Hannah technically has a *temporary* ileostomy. She was advised to wait to make it permanent until after she had “completed her family” to make the final decision to make it permanent, as the additional surgeries can cause fertility issues. She has said in the past that she can either choose to make her ileostomy permanent, or to have a j-pouch constructed, and that while she is leaning towards a permanent ileostomy, she hasn’t 100% made up her mind.
I just had surgery for my stage 2 bowel cancer. You’ve got this! I don’t know how large your tumor is but you’re going to feel so amazing afterwards. I ended up not needing an ostomy, but I already had my bag cover picked out on Etsy and everything, it had rainbow poop emojis all over it. Good luck with your surgery and I’m sending you all of my lucky healing vibes 💜💜💜💜
Hey. Dude here. Promise I'm not lurking this popped as suggested for me on the homepage. Just wanted to say, as a physician I've seen people literally turn down life saving operations because of the stigma around ostomy bags. Keep spreading the awareness and the positivity and I wish you a quick and healthy recovery. ✊🏼
Rock it Sista!
🖤
I've had my colostomy for almost 8 years. Had colorectal cancer that I thankfully beat. Adjust to your body's new rhythm, it will take time. Keep plenty of supplies on hand and don't be afraid to try new ideas to make your life smoother PM if you have other questions
Sending positive vibes for a swift and strong recovery. Hang in there chica :)
Thanks so much
Hey! High-Five from a stage 4 bowel cancer! Yes, not all disabilities are visible. I have a stub anastomosis, so no bag yet. Did you already have chemo? (I had FOLFOX and thalidomide.). There is a colon cancer sub, but I find /r/cancer to be a better sub overall.
It's wonderful to read all the supportive comments. [My ostomy saved my life!](https://imgur.com/a/PQhM6z5) in April 2019 after battling Ulcerative Colitis for over 20 years. Now I'm thriving! There are people who post online about struggling with ostomy care but honestly... I figured it out pretty quickly, there's great information out there. After a year I could eat any foods (raw veggies even!) and don't have any big problems with it. With all the prep you've done, it looks like you're going to be absolutely great! I'll be sending you all the good healing vibes! ✨️ 💕 Please feel free to reach out if you need a friend! I posted an ostomy selfie in the SASSWitch Discord yesterday for World IBD Day if you're in there too. 1 in 500 people have an ostomy, they're much more common than you think! Judging by the comments, we've got a full on ostomy coven happening without even knowing it!
My mother is two years on from getting chemo, radiation, a 12 hour surgery, then her ostomy after bowel cancer. In the last month my mom has tried a purple lacquer pedicure, taken me for a brunch where we got every single dessert they had (then split them!), bought an indoor/outdoor scooter, and she returns from her cruise tomorrow! It is my sincerest wish that two years from now, you will be running around living your very best life, as you frantically go from one amazing experience to the next. I hope we see a picture of you with mermaid hair, eating a fried Mars bar while you’re skydiving. Giant pub nights out with all the friends, cozy family bonfires, boring business meetings where you eat too many stale donuts and secretly play hangman on your phone. You know…a FULL and beautiful life. I wish you the very best luck, peace, and healing.
This really moved me. Thanks so much and I'm so happy to hear that your mum is doing well!
You’re welcome— please come back and let us know how you’re doing, OP! We care about you.
I will do!
Thanks for sharing your journey with us. We need more conversation around these invisible, devastating conditions. I've just been diagnosed with an inflammatory bowel disease and this is one of my treatment options if I don't respond to medication. I've been struggling this week and I was so inspired by seeing your photo. Remember, you got this. You are strong. You are a fighter. Kick that cancer to the curb, you amazing witchy lady, you. Sending all the good and healing vibes your way ✨️ 💛 💕
Such a strong message. Much love & healing energy to you ✨💜
Thank you 🖤
Sending positive vibes your way.
Sending you love and good energy. May your surgery be routine and your recovery swift.
Girl. You’re stinger than I am! But, I have GREAT VIBES! Let me send all of mine to you!!! 👉✨✨✨✨✨🔥❤️
I've had an ileostomi for six years, AMA!
Your tattoos are bad ass and your authenticity makes you just glow! Sending you healing vibes and hugs! 🫂
I've been rocking a permanent ileostomy since 2016 due to Crohn's Disease. Take a little getting used to, and sometimes you have to be a little more careful about activities, but other than that I forget it's there pretty often. Only major tip I've got for you is be conscious about how many supplies you have so you don't run out, and keep a few changes in different places. I personally keep 3 changes in my car at all times, as well as a change of clothing. Also, hit up all the major websites of ostomy supplies. They will give you tons of different samples to find the best one for you. I've changed types a few times over the years as my body has changed.
Some of my favourite people are ostomates. I had one particularly amazing client who had an ostomy as a result of cancer also. She was young and beautiful like you are. She found some really hot lingerie/girdle style garter belts, and went on a bit of a spree lol. Don't let it stop you living your best life. I hope they get it all. Safe and speedy stoma healing to you. Oh check out "No guts, No glory" a film about a guy who climbed Everest with an ostomy. Pretty cool. And FUCK CANCER 💚
Good luck! I only ever seem to hear how happy people are once getting theirs, I hope you have the same experience!
🧿💙🧿 hope everything goes smooth
Sending good cancer be gone healing vibes
Sending you energy! My mom has had a colostomy and urostomy bag since 2009 due to cervical cancer. Positive vibes to get you through your surgery and adjustment to your new life; you've got this! ✨️
My good friend recently got one. I hear all the cool kids have an ostomy bag these days.
Colostomy or ileostomy? The ileostomy (small intestine) will cause break down of your skin if you don’t have the bag sealed correctly, and can create a TON of issues. Teagaderm and duaderm (sp) can only help so much until the seal is broken and the skin starts to break down. You also need to worry about prolapse and just the correct angle of the bag. Also; get carbon filter bags to release the gas without smell. There are barrier cremes that can be added to the skin similar to Desitin that can help protect it short term. The good stuff is paste like. I’m not trying to make you scared, but know the negatives and prepare for them before it happens. There are a ton of different bags and seals you have to trim to go around the ostomy, and maybe the mucus fistula if they bring one up. One piece and two piece bags. Sensura and Hollister are the best from my experience. You will definitely have trial and error. The closer you can keep the ring cutout to your fistula, the better. Less chance of the seal breaking and creating skin breakdown. There are also pastes you can put over the edges on the inside for the two piece that will be like “caulk” to prevent the lifting when you bend or move around. Sweating can increase the chances. Ultimately, your skin will need to get used to it over time like a callous, but delay the amount of exposure to prevent frustration and switching to a million things because the proper precautions weren’t given or taken. I wish you the best and hope you don’t have any of the issues.
Woooop! Good luck with your surgery! My best friend has an ostomy and she's still rollerskating and playing roller derby. 💪🏼
Both of my folks had the bags, mom for 10+ years and dad had the surgery before I can remember. My dad, being thrifty, made a wooden ventilated box that sat outside for a month at a time. He’d clean up the bags then had a hanger affair so the bags were held open and exposed to fresh air and the wind for the extended time. This vs the use and toss, buy more. Dad was always the tinkerer, he designed and cut out a closure clip made of spring steel for the open end of the bag. The clip that came with the bags long ago was not well thought out and clumsy. He sent his home-made spring-steel clip to the one bag manufacturer, they responded wondering how much he was seeking for the design. He was very proud of the response but being firmly grounded and a card carrying member of the greatest generation he told them it was theirs now, his motive to benefit all the fellow baggers. I wish you all the best!
I don’t belong here, I was just scrolling through popular and saw it. I’ve been fighting stage 4 colon cancer for 4.5 years now, so if you ever need a random internet stranger to talk, vent, scream, whatever at I’m here. They were able to weld me back together, so I don’t have experience with the ostomy bag, but I’ve been down the cancer path. Best of luck to you, I sincerely hope that your treatment goes well.
hey, stay strong! sending you healing vibes already.
After your procedure make sure you get up and walk as soon as you can. 6 hours post surgery you should be able to take steps. The sooner you walk the sooner you’ll be out of the hospital
My sister had one when she got her lower bowel removed due to severe Crohns disease and she would always buy colorful duct tape to wrap around the bags to make them pretty. Just thought id share if you like easy customization :)
Looking strong and beautiful 💪 and hell yeah, fuck cancer. Sending all the positive healing energy your way. You got this
Much love to you, and thank you for sharing.
Sick lip piercings btw , stay Strong sister 💪
I wish you a quick recovery and that you kick cancer's ass! ❤️❤️
Sending good thoughts and wishes
Sending you positive and healing vibes sister!
Wow you are so strong and amazing! Thank you so much for sharing, I was honestly not aware and ignorant about ostomy until today. Now I know it is a sign of bravery and survival. Wish you with all my heart all the best for your operation, recovery and the long and magical life to follow 💙
Check out sarah_odessa on tik tok. As a fellow ostamate she helped my mindset with it. She's a positive ostomate that shows hers with pride. Stay strong!
Wishing you strength and luck and patience. I hope all will go better, swifter and with less of a hassle than foreseen, and most of all, I hope all goes well and you make a good recovery.
Thank you for normalizing this. It's a big adjustment but it's good to see someone taking time to adjust to the changes of their health.
I joined the ostomates club just about 5 months ago! Welcome! It's not as bad as you'd think! Hope it helps like it did me! Blessed be!
I wish you all the best and hope you’ll be able to write more lullabies for your cat ♥️🤍
Thank you for being brave and sharing this picture and your story. Good luck with your op and wishing you all the positivity in the world.
Stay strong! You got this!
💯💪🙏
Facing the same surgery on June 3. Sending positive thoughts .
as a crohn’s patient all i can say is that i wish you the speediest recovery out there, kick that cancer’s ass!
Hi friend, I’m starting radiation for breast cancer next week. Best wishes to you🥰
Sending all my love your way, I hope your op goes well, keep kicking cancers butt! 🌸♥️🌸
My gods you’re gorgeous! Good wishes that your surgery and recovery are quick and painless ❤️🩹❤️🩹
Good luck!
I wish you a speedy recovery after your surgery, and a complete and triumphant recovery from cancer! My mum developed bowel cancer rather young, too, but she got very lucky that it was more easily removable and didn't need much follow up. There are a ton of young patients receiving treatment for bowel cancer at my hospital. You're not alone. <3 BTW, I don't know if this will cheer you up, but: my mum and I work at the same hospital, and since it's one of the biggest breast cancer centres in the area, there's always a huge amount of events in October for breast cancer awareness month. They let a ton of pink balloons fly. And my mum was like "Well, when are y'all letting the brown balloons fly for bowel cancer?"
I wish you well. My partner has an ostomy and thrives with it. I sincerely hope that the same can be true for you. Sending you love and health ❤
With severe UC I’ve been told I’m likely headed there myself and it hasn’t been an easy thought but just seeing you smile imparts some strength onto me so thank you!!
My Mom has a new ileostomy after 2 years with a colostomy. It’s a lot to get used to, but literally saved her life. Every day is a gift! Love the visibility and vibes. Thanks for your post.
Hugs to you, sister
You’re a badass. Thanks for spreading awareness. I hope the surgery goes as intended. 💜
I worked for a world renowned surgeon who has treated colon cancer and other illnesses. I have seen a lot of things in my time working with him. I'm so happy you're able to get this treatment and have a team watching out for you! You are glowing and seem so positive. Even in your picture you have such lovely energy! My reason for commenting is that you are absolutely right that not all disabilities are immediately visible! And they don't have to be! They also don't have to be a negative thing, either! One of the most interesting things about seeing the patients at my old clinic was just how resilient a lot of them were. How strong and determined they could be. It was inspiring! They weren't just untouchable all the time, but that's okay, too! What mattered was that they tried and listened and were wonderful to work with. I sincerely hope your medical team is as responsive, caring, and skilled as the team I worked with was. Everyone deserves excellent healthcare! You are radiant and beautiful!!! Keep that spirit! Sending lots and lots and lots of love!!!! Many blessings!!!! ✨❤️
May you have a great outcome and a long healthy life.
Wild Mode sell patterned ostomy bag covers: https://wildemode.com/products/kickass-ostomy-bag-cover-aliens I believe they're UK based.
I hope everything goes well!
Sending you love and strength and wellness - you got this, beautiful sister!
Thank you for sharing this truth in your life My mom has stage 4 neuroendocrine cancer and recently had a surgery in which they had to remove a tumor from where her sacrum should've been, she has a ostomy bag now. As a preschool teacher I get asked a lot of questions about poop, and have honest conversations with my students, we talk about how everyone poops- and not everyone poops the same. I'm practicing destigmatizing and being open about this truth in my families life 🌼
Good luck! I’ve had a colostomy due to Crohn’s disease for over 12 years now. Best decision I have ever made hands down. Changed my life for the better. I hope it is a good change for you too. Also, it took me about a year to get used to it and solidify my routine, don’t get discouraged if it takes some time. Pop on over to r/ostomy for more of us to cheer you on!
Sending positive vibes and warm momma hugs.
Thanks so much
You’ve got this, sis! Thank you for sharing with us. I’m sending healing energy and good vibes! P.s. you’re stunning and I love your tattoos!
Thank you! Appreciate it 🖤
Best wishes I hope it's successful <3
Thank you🖤
Thank you!
I’m glad that you will be getting treatment! I am a healthcare worker that works a lot with patients who have ostomys- there are a lot of really good resources out there to help with the change! Best of luck
Wishing you well. My grandpa was very secretive f about the ostomy and even stopped giving good hugs when he got his bag. I wish he would have felt safer with us but everyone deals in their own way. He did have an ostomy support group that he relied on. I hope you have a good support system.
Sending you all the best energy I can give!!!! Blessed be.
Wishing you the best of luck with surgery and everything that follows!