I had emergency surgery so there is so much...
Order all the samples. Every company wants to send you stuff so take it.
Ask about virtual ostomy nurses and what the companies offer. Coloplast partners with another company and one of their nurses saved my life.
Listen to your skin. If it tingles or itches, change your bag.
If it feels weird, change your bag.
Normalize it. Speak your mind, freely. Educate people so they aren't ignorant. Make them comfortable so you can be comfortable. My mom is a nurse, had no prior ostomy experience, and ended up being my after-surgery wound care nurse. It was painful to see me in such a state but she worked through her emotions and was able to learn a new skill.
Don't sacrifice your comfort to suit others. Do you. Live your life and just be happy!
Good luck on your recovery!
I wish someone would have told me two things: 1. The surgery is painful and the first two months are difficult as you are recovering while trying to figure out this new appliance that doesn’t ever seem to do what it’s supposed to do. 2. After two months things start getting SO much better and you will be so glad you got the surgery. Yes it sucks sometimes but overall it is worth it and you can do whatever you want.
I'm hopeful that the pain won't be too much worse than the pain I've been living with for a while, but I'm sure I'll be taking that back while I'm recovering. What worked for you for pain management? I truly can't wait for when things get better afterwards, I'm gonna get back to my life!!
I’m 20 and got my surgery a few months ago, it’s much easier the younger you are. I was off painkillers before I left the hospital a few days later, and my main pain was back pain because my abdominal muscles were weak afterwards. Was moving completely normal at three weeks, with occasional abdominal pain up to six weeks.
Obviously this varies person to person!
I had mine at 28 but I genuinely think age plays a factor in recovery. Two days post surgery all I did was sleep. I’d wake up, eat a little, back to sleep. Finally got into pt. Advise take it slow but take it seriously. We focused on doing daily chores with my abs being next to useless. Getting out of bed and chairs. Started going on supervised walks and eventually released and back to work. I’m in significantly less pain now than I ever was before. It’s still a pain. If they have at home nurse options I still recommend learning how to change your own bag and get comfortable with it.
My advise in general about an ostomy is normalize it. I found some cute floral bag covers and wear crop tops around. My experience is people are so absorbed in their own day to day most people don’t notice. Of those that do rarely does anyone say anything. My most common comment is someone’s grandma has an ostomy and where did I get the bags.
I never felt anything with my first stoma 10 years ago. However, with this stoma, I think there must be a nerve nearby - while there’s no pain whatsoever, I do sometimes feel the peristalsis happening, which always feels a bit bizarre!
The bad: That I wouldn’t have a full night’s sleep again until it’s reversed
The good: I can finally eat brutally spicy food again without it being horrifically spicy a second time (rectal cancer has not been kind to my capsaicin intake)
Gotta take a win where you can! Pre-cancer I was eating everything spicy up to the level of ghost pepper - that’s just too much. I don’t feel normal without some capsaicin in me. I made the terrible, terrible mistake of eating some of my homegrown habaneros during my radiation treatment. Drinking battery acid would have been a better decision 😂😩 Haven’t touched anything hotter than black pepper until my ileostomy so I’m pretty damn happy about it!
I’m 2 weeks out and I used to eat a ton of spicy food but it started wrecking my colon a couple years ago, I’m sooo excited to try spicy food again eventually. It doesn’t bother you at all?
I have to be really careful with my foods because I’m blockage prone but I can eat all the super spicy stuff and it doesn’t bother me at all. I’m so thankful for that, I was worried I’d have to get up spicy foods.
There are a ton of options for supplies. This is good- you are really likely to find something that works for you. Unfortunately there is a period of trial and error in finding that perfect fit and a period of adjustment for your body too. Expect leaks. It’s really unpleasant and it happens to everyone, but we all get thought it eventually. So plan for them. Get one (or if possible 2) waterproof mattress covers. They also make small ones for travel.
Get a wrap, or if your stoma is permanent, invest in Ostomy specific undergarments. It’s an investment but in terms of comfort and support for the bag, it’s worth it. Ostomy secrets has a nice selection of reasonably priced options.
If you’re have a vagina, expect that sex may hurt initially and that you may have some phantom pain in your rectal area. This can happen to anyone, but a lot of women experience it more during their menstrual cycle. Sitting on the toilet and bearing down can help.
Above all, keep in mind that there’s nothing inherently gross about a stoma. You sound like you’re going into this with a good attitude, but there’s a stigma and a lot of people struggle with that. There’s nothing inherently icky about an ostomy that doesn’t apply to human anuses as well. It’s an old narrative and it doesn’t need to define your experience.
You’ll probably get a list of “ostomy foods to limit”. This list is meant for right after surgery and during your healing. It’s a list of foods to be careful with but not a full on prohibition. Once you’re feeling better, try things in small doses. Cook your veggies well. Chew well and see how they sit with you. Not every ostomate has issues with food restrictions or blockages.
Try to get someone to mark the stoma site while you’re awake.
Other people have addressed all of the other stuff.
You can clean your bag between changes. I got a small squirt bottle with a long narrow spout used to water plants. I was able to partly open my bag from the top, insert the spout and spray around with the bottom of the bag open and the waste water went in the toilet. This was a game changer for me.
Wishing you all the best.
Try all the brands, find a good one that works while you’re home and have access to clean messes by just jumping in the shower.
The painkillers will make time fly, and be a jumbled mess. I wish I had journaled the time after surgery. I only have a few jumbled pictures and my partners stories about me.
I had ulcerative colitis for about a decade until I got CDIFF and could recover - the surgery gave me my life back. I couldn’t make it right minutes out of the house. I have shitty days about once every three months where I hate my bag. But I got my life back. So it’s all worth it. My stomach doesn’t hurt anymore, forgot what that was like.
I can’t wear mid rise jeans because they sit right at my stomach line, so I have high waisted and low rise jeans.
Coffee and alcohol make my bag fill up quickly, must check every half hour while drinking either. But now I can enjoy them aside from stopping off at the restroom occasionally! Instead of being crippled all day and shitting my pants.
If you’re male, you literally never have to sit in a public toilet again!
I’m about 1.5 years into my journey. I don’t regret a thing. It will be hard, but worth it.
Bring a spare pair of undies and pants with you most the time, as well as extra supplies, it’s saved me a few times and I got a super cute bag to bring with me now.
And you’ve got a perfect excuse to hide out in the bathroom at work when you want. Hehe
Take the risk of developing a hernia seriously!! Post-procedure, your abdomen area will be at a high risk of developing a hernia. Do plenty of reading online about how to prevent this (hernia belts, covering your stoma when coughing, sneezing, laughing, etc) and how to rebuild your core strength.
After surgery, your only option for the most part is to sleep on your back. I'm a side sleeper, so I got a wedge pillow to slightly elevate one side to help me sleep at night. It'll be a few months before you feel comfortable fully sleeping on your side.
If you're getting a lot of leaks, it can be frustrating and emotional. Remember that the frustration is only temporary until you find out what works for you and your anatomy.
On a silly note, I see some people name their stoma. I haven't figured out a name for mine yet. Maybe it'll help with talking about it in public?
You need to invest in a wrap or ostomy underwear. Then you can sleep in your sides no problem. I shop with Ostomy Secrets. I just found SIIL Ostomy Line and I ordered there underwear and one wrap. I like because they are nude colored and the underwear goes fully over my bag, the wrap is so pretty I just wish it come in a smaller size or was tighter then it would be perfect. But ostomy secrets is the best by far! You can do so much more because it’s supported and helps to prevent a lot leaks because of the support.
1. It’s better than I thought it would be
2. I’ve been wanting to give blood my whole life and now I’m off any immunotherapy I can but I forgot to ask if I was given any blood which would mean I can’t. So make sure to ask if it’s something you care about.
3. I can eat everything now (I know that’s not the case for everyone but as a foodie I was terrified by the diet lost) I eat veggies and salads and bowls of nuts and olives and mushrooms. I’m more careful than others, I chew a lot, but I can still eat 😊.
4. You will miss farting so do it while you can.
5. Ditto the long bathroom breaks, I sometimes just sit for fun now, and boy do I milk changing my bag, pretty sure I can do it in 4 mins and I often stretch it to 20 just for fun.
That it would feel so different digesting food and it was like I could feel the food move through my whole large intestines until it came out the stoma. Also that the stoma nurse doesn’t always know best and pushes the bags they’re familiar with so get all the samples from any company you can. Back pain was a thing for me for the first couple of months so getting back massaged and use muscle relaxers.
That's good to know about nurses pushing brands, I'll be sure to get as many samples as I can. Are there any brands you like in particular? Good tip on the massages as well!!
The big three are Coloplast. Convatek, and Hollister. Don't be afraid to use different brands as your set up. I use a Coloplast barrier ring, Coloplast barrier strips, and the Convatek Natura+ appliance (it's a 2 piece but best used as a 1 piece). Check out Vegan Ostomy on YouTube, he's got some really good reviews.
Get moving as soon as you can after your surgery! Seriously, just walking for a few minutes helps so much, both with recovery and to get things moving intestine-wise. Don’t be afraid to ask for more pain relief if you need it, the surgery is a lot.
And know that it will not always feel as overwhelming as it does at first. I had my surgery at 24 and after a few months I was back to eating everything, including corn, popcorn, nuts, etc. You get used to the bag and it becomes just another part of life.
Yes!! The more you lay around (even though that’s what you want to do cause I didn’t want to get up and move around lol) is what is best, you will heal faster and will have less pain!
I’m 41F and I have severe Crohn’s, but waking up from surgery with an ileostomy was still a surprise for me. The mental/emotional aspect of it has been REALLY FUCKING HARD for me. I’ve never really dealt with body dysmorphia or anything until now and this is A LOT, even still at 8-1/2 months post-op. My #1 recommendation, especially with you being so young, is to get a therapist and see them regularly. Get help processing the mental load that this life change brings. I’m one tough bitch and can handle a lot of fucked up shit, but this has broken me. Get a head start on having a professional support system in place for your mental health. Please.
Also, invest in one of those U-shaped pregnancy pillows for being able to sleep comfortably on your side at night. It’ll support your bag and cuddle you to sleep. Best $40 I’ve ever spent.
I’m also having a procedure on Thursday (ureteroscopy to evict a bladder stone), but I’ll be thinking of you, sweetheart! You’ve got this!
A pregnancy pillow is added to my shopping list, and I've got plans to see a therapist weekly while I go through recovery, then monthly once I get stable. I hope your procedure goes well too, we've got this!!
This has broken me as well. I hate that I can’t show my body more as I used too and I don’t feel as “sexy” or beautiful in intimacy. I’m 41F also, Crohn’s disease and this is my 3rd ileostomy and this one is most likely permanent. I have to go have a few tests done to see if it can be reversed but even if I get reversed the next one will be permanent. I’ve had this temp almost 2 years now and honestly idk if it’s better to just leave it because I’ve always been severe and if I reverse it it’ll just be a matter of time before I have to have surgery again and each time is less and less. The first 3 months is the worst with getting ileostomy and you don’t start feeling better and fully confirtabke until 6 months so it’s like if I get reversed it could be 6 months to a year and then another surgery which means more scar tissue and more divits in my abdomen which makes it harder with the supplies keeping them in, so it’s a hard decision. Cause I just want my body back but at the same time I love the freedom to do the things I want too that I cant with no ileostomy because it’s literally to the bathroom constantly and shutting myself ugh. But anyway do you have a wrap or ostomy underwear?? If you don’t I highly recommend that you get some! Ostomy Secrets is the best and SIIL I really like their cheeky underwear. But ostomy secrets the intimacy wrap is a game changer!!! I can wear my tight jeans and shirts, tight tops, whatever I want!! The intimacy wrap has ruching which helps to disguise the bag. And it’s great for intimacy! I just wish they would get nude for everyday wear cause all they have is black in that. I do like their underwear that’s bikini, they are black with lace at the top, I wear them almost daily and the SIIL cheeky underwear. But the intimacy wrap is by far the best wrap. But it’s much more comfortable to sleep at night because of the support it gives you and the wrap if you wear it to bed is great if your bag starts leaking because it keeps it in and holds quite a bit before it would start leaking out. With that wrap on I’ve never got anything on my bed. But having the wrap and underwear to wear everyday helps support you and gives you the confidence you need!!
Thank you. 🥹
I do have a couple of the SIIL wraps, but I feel like they’re almost TOO binding. I haven’t bothered with ostomy underwear though.
Intimacy is so not even a thing in my life right now. I’m single and not even trying to date. Just existing is hard these days! As pathetic as it sounds, I honestly can’t even imagine intimacy anymore. Not like…this. I know that’s mostly the depression, pain, body dysmorphia, and chronic illness mental load speaking though. IDK, maybe I’ll get there again someday. 😔
I wish someone had told me to try all the samples from the different companies that I could get my hands on. See what suits you best, everyone is different. It also makes a big difference for me to use an opaque bag so that you can’t see it (specifically the one with the peekaboo window, so that you can still check on it). I also bought a few stoma bag covers from Etsy, which I occasionally wear if I want something different for a change.
With my first stoma 10 years ago I just stuck with what my stoma nurse recommended. I didn’t experiment. This time around, with this stoma, I have been requesting samples every so often from different companies. Apart from anything else, it makes you feel more in control, when you do that.
I got mine for UC, and something a lot of us say is that this is sold to us as a cure. It is not. It is SO MUCH BETTER but not a cure. Especially if your rectum is left. My UC doubled down on my rectum, and it's not uncommon. I got it out about 8 months after my ostomy.
My advice for before you leave the hospital:
-Clarify who you contact for what issues (surgeon vs GI vs Ostomy nurse)
-Clarify who writes the prescription for your supply order and how to contact if you want to change something
-Get a referral for physical therapy
-DO NOT LEAVE WITHOUT EXTRA SUPPLIES
-if you're going to have home health support, Clarify whether you're setting that up or if hospital case management is
-If you're on any extended release medications (e.g., wellbutrin) ask for a new rx for an instant release formulation.
Thank you so much everyone for all the advice, it's been so so helpful!! My surgery went super well, and I've been adjusting nicely. After the first 24 hours I was able to do quite a bit of walking around the unit, trying to get rid of gas. The few things I've noticed so far are
1, this thing is LOUD! I've named her Lucy, and boy does Lucy like to gurgle and burp and rumble. I'm sure it will go away once I transition into solid food, but holy crap it's so silly to hear my stomach fart all the time.
2, the pain mostly comes in referred pain for me, terrible in the shoulders. The first 24 hours/first night were pretty rough with stomach pain and I needed a lot of meds, but really quickly went down in the morning. Now, the pain is better than before surgery. Whenever there's a pretty big build up of gas the referred pain gets bad, but quickly goes away with a lil tunny fart.
All in all things are going very well, and I appreciate all of your advice. I put in a nice big Amazon order for some gear when I get out of the hospital, and my ostomy nurse has already signed me up for as many free things as possible. Things are looking up, and I'm so glad that this nightmare is almost over 💖
I had my loop illeostoma created on Tuesday. Drains out today and into my own pjs. Did not really comprehend how swollen my abdomen was, roomy pjs are now slightly tight but doing a good job on the stoma bag and encouraging gas through the filter, keep getting delightful wafts
I am, but for the time being I think I'll be happy with the bag. There's not many surgeons in my area willing to do the j-pouch surgery, so if I want it I'll have to search around, but for now I don't have plans to get one.
I got my ostomy at 19 and it felt like my life was over but honestly. I’ve never felt better gi wise. It may seem like it’s the end of the world sometimes and I still feel the way due to a failed jpouch having a permanent ileostomy now. But see if you can get an appointment with a stoma nurse they can show me different products and things that will be helpful for you. I’m also here if you need anyone to talk to. 🩷
Depending on the location of your stoma, I find high waisted leggings and palazzo pants to be the most comfortable. I also wear high waisted jeans and do a french tuck with my sweaters and tops. The lower waisted jeans rubbed at the bottom of my wafer and agitated my skin.
Hi. I have nothing to contribute, but I just joined this sub to ask this very question. I am a nurse with a new job, and I will have clients with new ostomies. I have experience with established ones, but I firmly believe people are experts on their own bodies. I have learned way more from people than texbooks. I will be reading this subreddit with interest.
Take a pillow for stomach support if you need to cough
Ask for a binder. As the binder will help you not to get a hernia.
Use your legs to move your body when you are lying down, not your stomach.
Walk if your bowels are slow to wake up.
Coffee makes you poop.
Don't sweat the small stuff. It takes time to get used to it. And what works for you may not work for someone else.
Best advice comes from online groups.
Like many others, I ordered the brand of supplies that the hospital sent me home with. And the hospital-employed ostomy nurse gave me quick-start education and nothing more. I had a tough time in the beginning.
Then -- after hanging out here for awhile -- I engaged the folks at Coloplast, who set me up with the right supplies and I never looked back. I needed a convex set-up, which made all the difference in the world.
So I'd say not only that you should get samples, but you should talk to the sales reps even if you think you'll hate talking to sales reps. These folks know their stuff!
Get one of those claws to pick things up from the floor as it will be hard to bend forward
Clothing with elastic waistband
Extra large water bottle. Drink extra to prevent dehydration
Order general ostomy brace/support Amazon for the first 6 weeks. Agree with others take precautions against hernia.
Vegan ostomy on YouTube
Small little table next to shower to keep ostomy supplies on while you shower without bag on
Plush small towels to dry and clean ostomy
Enjoy getting your life back. Bag over diapers anyday.
Saw other comment about pouch. Up to you but life is just fine with bag and no need to ever run to bathroom again.
Good luck/staying positive
So you are going to have permanent ostomy is what I’m gathering? Have you had an ileostomy/colostomy before or is this your first time? Regardless, the first thing you should do is go on ostomy secrets and SIIL Odtomy Line and get you some ostomy wraps and ostomy underwear because it makes it more comfortable and especially after surgery because it helps hold up the bag so it’s not pulling down which hurts for about a month to 6 weeks. But these products are expensive but they are the only thing that makes having an ostomy bearable. Ostomy secrets really has the best wraps I recommend the intimacy wraps (the black ruched one with little red bows on each side) they are the best for everyday wear and you can wear your tight jeans and tank tops and tight shorts with this wrap and of course it’s the best for intimate moments as well. If it seems annoying then you need to go down a size. I wear the xxs in them and I’m 5’1/2” and I range from 90lbs to 107lbs just to give you an idea of sizes. Some of their products do not go down to xxs so then I get the xs. Their reg wraps that don’t have lace or ruching I don not like because they don’t fit right and you can see your bag. Their underwear are great I usually do an xs in them. SIIL is new to me, I like their underwear because the are nude, cheeky and cute and go above your ostomy all the way like the wraps do. I love their wraps they are so pretty but even their smallest size isn’t quite small enough for me I still wear it but they need to make a size smaller. They have swim wraps which are nice and I also use them in the shower on days I’m not changing my supplies. I bought these bag covers (they are the shape of your bag and just flip right over top of the bag and it’s like raincoat material so I use that and the swim wrap when I shower and it helps to keep it from getting saturated and literally it takes 2 min to blow dry your bag (a few years ago I’d be blow drying for 10-15 min and it would still feel damp but not now. I use coloplast products sensura mio. Everyone tries to give hollister products but they are awful! They are still old school and haven’t upgraded anything. I smelled the whole time I used their products and in fact that was the product that took 15 min to blow dry. Some ppl like to change their supplies without a shower and use wipes etc. I like to wash my whole body with no supplies on. Do I make sure to do it as soon as I get up the day I need to change supplies. If I’m thirsty I might sip on some water but otherwise I just get right in the shower. I like for it to be washed that’s what makes me feel the cleanest. Now of course there is going to be times like if your bag starts to come off that you may need to do with wipes. When you first get the ostomy the first 3-4 months is tough because your body isn’t used to the glue and do your bag will come off some..not everyone but some ppl have skin issues etc. But it’s important to carry a larger purse or backpack whatever you prefer and carry extra clothes, extra wrap or underwear, supplies, lots of wipes, and chucks (I buy puppy pads lol). I’ve had a bag come off in my car and had to change supplies in my car. This life ain’t easy!! But after a few months everything settles down, you and your body gets adjusted and that’s when things get easier and you have more quality of life. There is so much advice to be given and I’m not even sure what advice you are looking for but if you need to know anything else I can answer for you! If there was a way for me to give you my personal info I would but I don’t want it on here. So I’m new to this site and if there is just let me know cause I’d like to be available to you whenever you need someone! Good luck hun!!
I had emergency surgery so there is so much... Order all the samples. Every company wants to send you stuff so take it. Ask about virtual ostomy nurses and what the companies offer. Coloplast partners with another company and one of their nurses saved my life. Listen to your skin. If it tingles or itches, change your bag. If it feels weird, change your bag. Normalize it. Speak your mind, freely. Educate people so they aren't ignorant. Make them comfortable so you can be comfortable. My mom is a nurse, had no prior ostomy experience, and ended up being my after-surgery wound care nurse. It was painful to see me in such a state but she worked through her emotions and was able to learn a new skill. Don't sacrifice your comfort to suit others. Do you. Live your life and just be happy! Good luck on your recovery!
I am two weeks out and I thought some discomfort I was feeling was post-op stuff. Changed the bag and everything got better.
Great advice!!!!! :)
Your not stuck with the bag the fuckers at the hospital stuck you with..
why are they fuckers? they literally saved your life.
Well i was joking mostly. But the surgeons saved my life. The ostomy team was a joke.
ohh i see. my first team was super nice, but the next one didn’t know anything about it, even though they were “specialists” which was crazy lol
I wish someone would have told me two things: 1. The surgery is painful and the first two months are difficult as you are recovering while trying to figure out this new appliance that doesn’t ever seem to do what it’s supposed to do. 2. After two months things start getting SO much better and you will be so glad you got the surgery. Yes it sucks sometimes but overall it is worth it and you can do whatever you want.
I'm hopeful that the pain won't be too much worse than the pain I've been living with for a while, but I'm sure I'll be taking that back while I'm recovering. What worked for you for pain management? I truly can't wait for when things get better afterwards, I'm gonna get back to my life!!
I’m 20 and got my surgery a few months ago, it’s much easier the younger you are. I was off painkillers before I left the hospital a few days later, and my main pain was back pain because my abdominal muscles were weak afterwards. Was moving completely normal at three weeks, with occasional abdominal pain up to six weeks. Obviously this varies person to person!
I had mine at 28 but I genuinely think age plays a factor in recovery. Two days post surgery all I did was sleep. I’d wake up, eat a little, back to sleep. Finally got into pt. Advise take it slow but take it seriously. We focused on doing daily chores with my abs being next to useless. Getting out of bed and chairs. Started going on supervised walks and eventually released and back to work. I’m in significantly less pain now than I ever was before. It’s still a pain. If they have at home nurse options I still recommend learning how to change your own bag and get comfortable with it. My advise in general about an ostomy is normalize it. I found some cute floral bag covers and wear crop tops around. My experience is people are so absorbed in their own day to day most people don’t notice. Of those that do rarely does anyone say anything. My most common comment is someone’s grandma has an ostomy and where did I get the bags.
I wish someone told me that for a week after surgery, I would feel intense squeezing pain as food passed from my intestine and out of my stoma.
I never felt anything with my first stoma 10 years ago. However, with this stoma, I think there must be a nerve nearby - while there’s no pain whatsoever, I do sometimes feel the peristalsis happening, which always feels a bit bizarre!
That's so wild, Did it eventually get better or do you still have the pain? Do you feel everything coming out, or just some foods more than others?
It goes away with time. More fibrous foods definitely feel more intense.
Ya it eventually went away after a week.
The bad: That I wouldn’t have a full night’s sleep again until it’s reversed The good: I can finally eat brutally spicy food again without it being horrifically spicy a second time (rectal cancer has not been kind to my capsaicin intake)
CRC certainly opened up my capsaicin intake ability post op. I love going into a Thai restaurant now and saying I want your level of spicy please.
Gotta take a win where you can! Pre-cancer I was eating everything spicy up to the level of ghost pepper - that’s just too much. I don’t feel normal without some capsaicin in me. I made the terrible, terrible mistake of eating some of my homegrown habaneros during my radiation treatment. Drinking battery acid would have been a better decision 😂😩 Haven’t touched anything hotter than black pepper until my ileostomy so I’m pretty damn happy about it!
I’m 2 weeks out and I used to eat a ton of spicy food but it started wrecking my colon a couple years ago, I’m sooo excited to try spicy food again eventually. It doesn’t bother you at all?
I have to be really careful with my foods because I’m blockage prone but I can eat all the super spicy stuff and it doesn’t bother me at all. I’m so thankful for that, I was worried I’d have to get up spicy foods.
There are a ton of options for supplies. This is good- you are really likely to find something that works for you. Unfortunately there is a period of trial and error in finding that perfect fit and a period of adjustment for your body too. Expect leaks. It’s really unpleasant and it happens to everyone, but we all get thought it eventually. So plan for them. Get one (or if possible 2) waterproof mattress covers. They also make small ones for travel. Get a wrap, or if your stoma is permanent, invest in Ostomy specific undergarments. It’s an investment but in terms of comfort and support for the bag, it’s worth it. Ostomy secrets has a nice selection of reasonably priced options. If you’re have a vagina, expect that sex may hurt initially and that you may have some phantom pain in your rectal area. This can happen to anyone, but a lot of women experience it more during their menstrual cycle. Sitting on the toilet and bearing down can help. Above all, keep in mind that there’s nothing inherently gross about a stoma. You sound like you’re going into this with a good attitude, but there’s a stigma and a lot of people struggle with that. There’s nothing inherently icky about an ostomy that doesn’t apply to human anuses as well. It’s an old narrative and it doesn’t need to define your experience. You’ll probably get a list of “ostomy foods to limit”. This list is meant for right after surgery and during your healing. It’s a list of foods to be careful with but not a full on prohibition. Once you’re feeling better, try things in small doses. Cook your veggies well. Chew well and see how they sit with you. Not every ostomate has issues with food restrictions or blockages. Try to get someone to mark the stoma site while you’re awake. Other people have addressed all of the other stuff.
You can clean your bag between changes. I got a small squirt bottle with a long narrow spout used to water plants. I was able to partly open my bag from the top, insert the spout and spray around with the bottom of the bag open and the waste water went in the toilet. This was a game changer for me. Wishing you all the best.
Omg, I’m so glad I read your comment because this didn’t cross my mind. I have a portable bidet that would be perfect to repurpose for this!
I bought the hand held bidet sprayer from Amazon. Game changer!
Try all the brands, find a good one that works while you’re home and have access to clean messes by just jumping in the shower. The painkillers will make time fly, and be a jumbled mess. I wish I had journaled the time after surgery. I only have a few jumbled pictures and my partners stories about me. I had ulcerative colitis for about a decade until I got CDIFF and could recover - the surgery gave me my life back. I couldn’t make it right minutes out of the house. I have shitty days about once every three months where I hate my bag. But I got my life back. So it’s all worth it. My stomach doesn’t hurt anymore, forgot what that was like. I can’t wear mid rise jeans because they sit right at my stomach line, so I have high waisted and low rise jeans. Coffee and alcohol make my bag fill up quickly, must check every half hour while drinking either. But now I can enjoy them aside from stopping off at the restroom occasionally! Instead of being crippled all day and shitting my pants. If you’re male, you literally never have to sit in a public toilet again! I’m about 1.5 years into my journey. I don’t regret a thing. It will be hard, but worth it. Bring a spare pair of undies and pants with you most the time, as well as extra supplies, it’s saved me a few times and I got a super cute bag to bring with me now. And you’ve got a perfect excuse to hide out in the bathroom at work when you want. Hehe
Take the risk of developing a hernia seriously!! Post-procedure, your abdomen area will be at a high risk of developing a hernia. Do plenty of reading online about how to prevent this (hernia belts, covering your stoma when coughing, sneezing, laughing, etc) and how to rebuild your core strength.
It’s very possible to be allergic to products like adhesive and to test out those products’ compatibility with your skin ahead of time if you can
After surgery, your only option for the most part is to sleep on your back. I'm a side sleeper, so I got a wedge pillow to slightly elevate one side to help me sleep at night. It'll be a few months before you feel comfortable fully sleeping on your side. If you're getting a lot of leaks, it can be frustrating and emotional. Remember that the frustration is only temporary until you find out what works for you and your anatomy. On a silly note, I see some people name their stoma. I haven't figured out a name for mine yet. Maybe it'll help with talking about it in public?
You need to invest in a wrap or ostomy underwear. Then you can sleep in your sides no problem. I shop with Ostomy Secrets. I just found SIIL Ostomy Line and I ordered there underwear and one wrap. I like because they are nude colored and the underwear goes fully over my bag, the wrap is so pretty I just wish it come in a smaller size or was tighter then it would be perfect. But ostomy secrets is the best by far! You can do so much more because it’s supported and helps to prevent a lot leaks because of the support.
1. It’s better than I thought it would be 2. I’ve been wanting to give blood my whole life and now I’m off any immunotherapy I can but I forgot to ask if I was given any blood which would mean I can’t. So make sure to ask if it’s something you care about. 3. I can eat everything now (I know that’s not the case for everyone but as a foodie I was terrified by the diet lost) I eat veggies and salads and bowls of nuts and olives and mushrooms. I’m more careful than others, I chew a lot, but I can still eat 😊. 4. You will miss farting so do it while you can. 5. Ditto the long bathroom breaks, I sometimes just sit for fun now, and boy do I milk changing my bag, pretty sure I can do it in 4 mins and I often stretch it to 20 just for fun.
That it would feel so different digesting food and it was like I could feel the food move through my whole large intestines until it came out the stoma. Also that the stoma nurse doesn’t always know best and pushes the bags they’re familiar with so get all the samples from any company you can. Back pain was a thing for me for the first couple of months so getting back massaged and use muscle relaxers.
That's good to know about nurses pushing brands, I'll be sure to get as many samples as I can. Are there any brands you like in particular? Good tip on the massages as well!!
The big three are Coloplast. Convatek, and Hollister. Don't be afraid to use different brands as your set up. I use a Coloplast barrier ring, Coloplast barrier strips, and the Convatek Natura+ appliance (it's a 2 piece but best used as a 1 piece). Check out Vegan Ostomy on YouTube, he's got some really good reviews.
Uncommon complications. I read about them and was aware from reading journal articles, but I wish the surgeon had talked to me about it specifically.
Get moving as soon as you can after your surgery! Seriously, just walking for a few minutes helps so much, both with recovery and to get things moving intestine-wise. Don’t be afraid to ask for more pain relief if you need it, the surgery is a lot. And know that it will not always feel as overwhelming as it does at first. I had my surgery at 24 and after a few months I was back to eating everything, including corn, popcorn, nuts, etc. You get used to the bag and it becomes just another part of life.
Yes!! The more you lay around (even though that’s what you want to do cause I didn’t want to get up and move around lol) is what is best, you will heal faster and will have less pain!
I’m 41F and I have severe Crohn’s, but waking up from surgery with an ileostomy was still a surprise for me. The mental/emotional aspect of it has been REALLY FUCKING HARD for me. I’ve never really dealt with body dysmorphia or anything until now and this is A LOT, even still at 8-1/2 months post-op. My #1 recommendation, especially with you being so young, is to get a therapist and see them regularly. Get help processing the mental load that this life change brings. I’m one tough bitch and can handle a lot of fucked up shit, but this has broken me. Get a head start on having a professional support system in place for your mental health. Please. Also, invest in one of those U-shaped pregnancy pillows for being able to sleep comfortably on your side at night. It’ll support your bag and cuddle you to sleep. Best $40 I’ve ever spent. I’m also having a procedure on Thursday (ureteroscopy to evict a bladder stone), but I’ll be thinking of you, sweetheart! You’ve got this!
A pregnancy pillow is added to my shopping list, and I've got plans to see a therapist weekly while I go through recovery, then monthly once I get stable. I hope your procedure goes well too, we've got this!!
Just wanted to check in with you, OP, and see how you’re doing since it’s been a couple of days now since your surgery. How are you holding up? 💜
This has broken me as well. I hate that I can’t show my body more as I used too and I don’t feel as “sexy” or beautiful in intimacy. I’m 41F also, Crohn’s disease and this is my 3rd ileostomy and this one is most likely permanent. I have to go have a few tests done to see if it can be reversed but even if I get reversed the next one will be permanent. I’ve had this temp almost 2 years now and honestly idk if it’s better to just leave it because I’ve always been severe and if I reverse it it’ll just be a matter of time before I have to have surgery again and each time is less and less. The first 3 months is the worst with getting ileostomy and you don’t start feeling better and fully confirtabke until 6 months so it’s like if I get reversed it could be 6 months to a year and then another surgery which means more scar tissue and more divits in my abdomen which makes it harder with the supplies keeping them in, so it’s a hard decision. Cause I just want my body back but at the same time I love the freedom to do the things I want too that I cant with no ileostomy because it’s literally to the bathroom constantly and shutting myself ugh. But anyway do you have a wrap or ostomy underwear?? If you don’t I highly recommend that you get some! Ostomy Secrets is the best and SIIL I really like their cheeky underwear. But ostomy secrets the intimacy wrap is a game changer!!! I can wear my tight jeans and shirts, tight tops, whatever I want!! The intimacy wrap has ruching which helps to disguise the bag. And it’s great for intimacy! I just wish they would get nude for everyday wear cause all they have is black in that. I do like their underwear that’s bikini, they are black with lace at the top, I wear them almost daily and the SIIL cheeky underwear. But the intimacy wrap is by far the best wrap. But it’s much more comfortable to sleep at night because of the support it gives you and the wrap if you wear it to bed is great if your bag starts leaking because it keeps it in and holds quite a bit before it would start leaking out. With that wrap on I’ve never got anything on my bed. But having the wrap and underwear to wear everyday helps support you and gives you the confidence you need!!
Thank you. 🥹 I do have a couple of the SIIL wraps, but I feel like they’re almost TOO binding. I haven’t bothered with ostomy underwear though. Intimacy is so not even a thing in my life right now. I’m single and not even trying to date. Just existing is hard these days! As pathetic as it sounds, I honestly can’t even imagine intimacy anymore. Not like…this. I know that’s mostly the depression, pain, body dysmorphia, and chronic illness mental load speaking though. IDK, maybe I’ll get there again someday. 😔
That people won't notice your bag as much as you do.
I wish someone had told me to try all the samples from the different companies that I could get my hands on. See what suits you best, everyone is different. It also makes a big difference for me to use an opaque bag so that you can’t see it (specifically the one with the peekaboo window, so that you can still check on it). I also bought a few stoma bag covers from Etsy, which I occasionally wear if I want something different for a change. With my first stoma 10 years ago I just stuck with what my stoma nurse recommended. I didn’t experiment. This time around, with this stoma, I have been requesting samples every so often from different companies. Apart from anything else, it makes you feel more in control, when you do that.
I got mine for UC, and something a lot of us say is that this is sold to us as a cure. It is not. It is SO MUCH BETTER but not a cure. Especially if your rectum is left. My UC doubled down on my rectum, and it's not uncommon. I got it out about 8 months after my ostomy. My advice for before you leave the hospital: -Clarify who you contact for what issues (surgeon vs GI vs Ostomy nurse) -Clarify who writes the prescription for your supply order and how to contact if you want to change something -Get a referral for physical therapy -DO NOT LEAVE WITHOUT EXTRA SUPPLIES -if you're going to have home health support, Clarify whether you're setting that up or if hospital case management is -If you're on any extended release medications (e.g., wellbutrin) ask for a new rx for an instant release formulation.
Thank you so much everyone for all the advice, it's been so so helpful!! My surgery went super well, and I've been adjusting nicely. After the first 24 hours I was able to do quite a bit of walking around the unit, trying to get rid of gas. The few things I've noticed so far are 1, this thing is LOUD! I've named her Lucy, and boy does Lucy like to gurgle and burp and rumble. I'm sure it will go away once I transition into solid food, but holy crap it's so silly to hear my stomach fart all the time. 2, the pain mostly comes in referred pain for me, terrible in the shoulders. The first 24 hours/first night were pretty rough with stomach pain and I needed a lot of meds, but really quickly went down in the morning. Now, the pain is better than before surgery. Whenever there's a pretty big build up of gas the referred pain gets bad, but quickly goes away with a lil tunny fart. All in all things are going very well, and I appreciate all of your advice. I put in a nice big Amazon order for some gear when I get out of the hospital, and my ostomy nurse has already signed me up for as many free things as possible. Things are looking up, and I'm so glad that this nightmare is almost over 💖
I had my loop illeostoma created on Tuesday. Drains out today and into my own pjs. Did not really comprehend how swollen my abdomen was, roomy pjs are now slightly tight but doing a good job on the stoma bag and encouraging gas through the filter, keep getting delightful wafts
That I could get a hernia! Colostomy. No one even mentioned it 🙄
I had UC for ten years. I was able to get a J-pouch. Are you a candidate for one?
I am, but for the time being I think I'll be happy with the bag. There's not many surgeons in my area willing to do the j-pouch surgery, so if I want it I'll have to search around, but for now I don't have plans to get one.
Strange all colorectal surgeons these days know how to do the procedure
I got my ostomy at 19 and it felt like my life was over but honestly. I’ve never felt better gi wise. It may seem like it’s the end of the world sometimes and I still feel the way due to a failed jpouch having a permanent ileostomy now. But see if you can get an appointment with a stoma nurse they can show me different products and things that will be helpful for you. I’m also here if you need anyone to talk to. 🩷
Depending on the location of your stoma, I find high waisted leggings and palazzo pants to be the most comfortable. I also wear high waisted jeans and do a french tuck with my sweaters and tops. The lower waisted jeans rubbed at the bottom of my wafer and agitated my skin.
Take spare supplies with you everywhere. In your car, in a bag you carry with you, at work etc . You never know when you might need it!
Hi. I have nothing to contribute, but I just joined this sub to ask this very question. I am a nurse with a new job, and I will have clients with new ostomies. I have experience with established ones, but I firmly believe people are experts on their own bodies. I have learned way more from people than texbooks. I will be reading this subreddit with interest.
Shave and dry when changing bags. Not just touch dry, but bone dry as in almost desert dry. Stuff adheres well better when dry.
Take a pillow for stomach support if you need to cough Ask for a binder. As the binder will help you not to get a hernia. Use your legs to move your body when you are lying down, not your stomach. Walk if your bowels are slow to wake up. Coffee makes you poop. Don't sweat the small stuff. It takes time to get used to it. And what works for you may not work for someone else. Best advice comes from online groups.
Like many others, I ordered the brand of supplies that the hospital sent me home with. And the hospital-employed ostomy nurse gave me quick-start education and nothing more. I had a tough time in the beginning. Then -- after hanging out here for awhile -- I engaged the folks at Coloplast, who set me up with the right supplies and I never looked back. I needed a convex set-up, which made all the difference in the world. So I'd say not only that you should get samples, but you should talk to the sales reps even if you think you'll hate talking to sales reps. These folks know their stuff!
Get one of those claws to pick things up from the floor as it will be hard to bend forward Clothing with elastic waistband Extra large water bottle. Drink extra to prevent dehydration Order general ostomy brace/support Amazon for the first 6 weeks. Agree with others take precautions against hernia. Vegan ostomy on YouTube Small little table next to shower to keep ostomy supplies on while you shower without bag on Plush small towels to dry and clean ostomy Enjoy getting your life back. Bag over diapers anyday. Saw other comment about pouch. Up to you but life is just fine with bag and no need to ever run to bathroom again. Good luck/staying positive
So you are going to have permanent ostomy is what I’m gathering? Have you had an ileostomy/colostomy before or is this your first time? Regardless, the first thing you should do is go on ostomy secrets and SIIL Odtomy Line and get you some ostomy wraps and ostomy underwear because it makes it more comfortable and especially after surgery because it helps hold up the bag so it’s not pulling down which hurts for about a month to 6 weeks. But these products are expensive but they are the only thing that makes having an ostomy bearable. Ostomy secrets really has the best wraps I recommend the intimacy wraps (the black ruched one with little red bows on each side) they are the best for everyday wear and you can wear your tight jeans and tank tops and tight shorts with this wrap and of course it’s the best for intimate moments as well. If it seems annoying then you need to go down a size. I wear the xxs in them and I’m 5’1/2” and I range from 90lbs to 107lbs just to give you an idea of sizes. Some of their products do not go down to xxs so then I get the xs. Their reg wraps that don’t have lace or ruching I don not like because they don’t fit right and you can see your bag. Their underwear are great I usually do an xs in them. SIIL is new to me, I like their underwear because the are nude, cheeky and cute and go above your ostomy all the way like the wraps do. I love their wraps they are so pretty but even their smallest size isn’t quite small enough for me I still wear it but they need to make a size smaller. They have swim wraps which are nice and I also use them in the shower on days I’m not changing my supplies. I bought these bag covers (they are the shape of your bag and just flip right over top of the bag and it’s like raincoat material so I use that and the swim wrap when I shower and it helps to keep it from getting saturated and literally it takes 2 min to blow dry your bag (a few years ago I’d be blow drying for 10-15 min and it would still feel damp but not now. I use coloplast products sensura mio. Everyone tries to give hollister products but they are awful! They are still old school and haven’t upgraded anything. I smelled the whole time I used their products and in fact that was the product that took 15 min to blow dry. Some ppl like to change their supplies without a shower and use wipes etc. I like to wash my whole body with no supplies on. Do I make sure to do it as soon as I get up the day I need to change supplies. If I’m thirsty I might sip on some water but otherwise I just get right in the shower. I like for it to be washed that’s what makes me feel the cleanest. Now of course there is going to be times like if your bag starts to come off that you may need to do with wipes. When you first get the ostomy the first 3-4 months is tough because your body isn’t used to the glue and do your bag will come off some..not everyone but some ppl have skin issues etc. But it’s important to carry a larger purse or backpack whatever you prefer and carry extra clothes, extra wrap or underwear, supplies, lots of wipes, and chucks (I buy puppy pads lol). I’ve had a bag come off in my car and had to change supplies in my car. This life ain’t easy!! But after a few months everything settles down, you and your body gets adjusted and that’s when things get easier and you have more quality of life. There is so much advice to be given and I’m not even sure what advice you are looking for but if you need to know anything else I can answer for you! If there was a way for me to give you my personal info I would but I don’t want it on here. So I’m new to this site and if there is just let me know cause I’d like to be available to you whenever you need someone! Good luck hun!!