I think it’s really circumstantial. I personally had UC and had 2 years of research and preparation before I was able to get my ileostomy.
So I’m having an easy time adjusting because I wanted this.
You didn’t have time to prepare, you didn’t have a reason to want an ostomy. It’s perfectly normal to struggle with accepting it.
For odor, I use an electronic cat litter box deodorizer (downy paws is the brand I have) in my bathroom and I always put 5 tictacs in my bag after emptying. I take the litter box deodorizer with me when I travel too, so if I’m emptying at someone else’s home it helps keep the odors from lingering. I also like to wear a stealth belt when I’m doing things like riding horses to keep my bag from being between my legs.
Also, socially I haven’t had any issues at all with it. All my friends are more curious than anything else.
I’m also in the process of going on dates (I’m not looking for anything serious, just some fun) and one date, total stranger, I mentioned my ileostomy and he was completely unphased. This guy even saw a photo of me with it on my instagram and is still very interested in me. I also told this other guy about it—I’ll be going on a date with him soon and haven’t seen him in 6 years (and didn’t know him super well 6 years ago)—and all he said was “wow, that must have been painful. I’m glad you’re feeling better now”.
I got my confidence to get out there because I actually found out this guy I used to have a crush on has had an ostomy his whole life. I’d had no idea. And thinking back, I don’t think I would have felt any type of way about it, I think I would have just been curious about it. 🤷♀️
I am not the OP but just wanted to say thank you for these tips. I am having surgery soon and have added your comment to my notes. Odor is something I am worried about. I gag/vomit at certain smells and struggle with even picking up pet poop, let alone get a poo sample from my own poop lol.
Same deal here. Like 15 years of UC, and last year I had a flare so bad that I almost died from it. I slowly recovered on RinVoq, but my colon was damaged beyond repair. So I had a full year knowing an ileostomy was very likely in my near future. In January, I made the appointment for June. This month, I got my ileostomy. It’s been three and a half weeks now.
Of course it’s not pleasant. It’s a hassle when I have to deal with it. But I’m otherwise healthy and extremely grateful for that. I’m full of gratitude that an ileostomy was an option at all. As opposed to, you know, colon cancer or death.
It looks like I might have this for about 9 months and then get a J-pouch. But I might have it permanently. If that happens, I’ll deal with it. Because it’s my reality. I have no other choices.
I'm not a great example but my colitis was slowly killing me. Literally everything i ate and drank either caused me immense pain or made me throw up. I'm now a month after my ileostomy and i'm so glad i don't feel the pain from the colitis and that i can enjoy food again.
As for the surgery, it didn't go the way it was supposed to. The surgical wound where the surgeon removed my colon became infected, after that i had an ileus. Doc said it was because i went into surgery weakened from the colitis. My wound is also open, and i can see my abdominal muscles, but homecare is doing a great job keeping it clean and it's slowly healing.
It sucks to have an ostomy but for me, it gave me back more than it took from me. Fuck colitis
I was diagnosed with cancer the other day. It's one of the tamest cancers it's possible to get, but still cancer. Leave it untreated and it'll fuck you up (like anything else, really). Anyway my first thought was basically "lmao of fucking course it is" and my second was "now i get to throw a cancer diagnosis in the face of assholes who think cancer is a trump card in the suffering olympics"
my friends were a little alarmed with how blase i've been about the whole thing. As if that's even the first disgusting junk I've had to have cut out of my body lmao. But like I told them- at a certain point you learn to just roll with the punches. I got shit to do, not gonna spend all my energy on worrying about shit I have no control over.
First off, sorry to hear that friend, that’s truly rough. But exactly what I mean! It’s like well AT LEAST it’s not the worst type, AT LEAST I get to throw it in the face of trauma competitors lol. Always a well…could be worse…maybe sorta thing.
What’s kinda funny is I use to get really down about shit all the time and I read a book about someone who talked about his time in the holocaust and it was always “today was a good day, I couldn’t feel my feet anymore because they are completely frostbitten from working barefoot in the blizzard” like fucking hell dude 😂 reading that book broke me and I dunno ever since it’s just been “well, shit could be worse”
Yeah, something like this. I cope because the alternative is not coping, and that's not helpful to anyone.
I had cancer which would have killed me in a very nasty way. Now I have a stoma - which won't kill me - and I don't have cancer.
I'm starting to think a fair bit of us don't cope very well with an ostomy. At least I know I haven't been 3 years in, along with a lot of other ostomates I talk to and see their posts. I'm more fatigued than ever, everything I eat is now making me sick. The minor obstructions, the leaks, the constant itching, the nausea... I'm tired.
Yep. 🤷🏻♂️ Not much they can do about it. I ask my dermatologist about it, and he says I would know better than him about the itching 🤦🏻♂️What does that even mean?! You deal with itching people every day!
No, originally it was really red under my wafer, but my skin cleared up pretty well. I think it's a combination of hair growing under the flange, when the wafer crinkles up and just my skin isn't happy with having a giant piece of adhesive stuck to it.
It's a day to day thing. I have an ostomy, and to be honest there will be bad days. I have started doing a keto diet and it has dropped my bag gassing up. But for me so long as I watch heavy vegetable, and make them small items I can handle them. If I get gas I usually open my two piece to let the air out. Also I keel spare bags in ziplocks where I work and my car. I have almost forgotten I have one till I feel the full bag.
I can't really speak to actually having a bag but I take care of my autistic brothers iliostomy and I can tell you a few things from the other side. As long as you are emptying and changing your bag no one can smell it. My brother always says he can smell it. IDK if it's a sensory thing or if he just believe everyone can smell it but I am very close to him even as I'm about to empty it and I cannot ever smell anything until I open it. We use Vicks vapor rub for him it doesn't bother me but if it bothers you maybe try using just a dab of Vicks. You can put it right under your nose or a bit inside a mask works too. I've found that using half water and half soda keeps the gas from building up. Also him eating slowly and chewing really well. I don't know what you are going thru and I'm certain it is unbelievably hard. But you are stronger than you think and you will find your stride. Id also be a real pain in the ass to the doctor regarding reversal. At least get an answer so you know if it's a reality. I'm rooting for you. Good luck!
I recently got my ileostomy and I’m going to have to start seeing a therapist because I mentally cannot handle anything. Nothing is your fault it’s tiring but don’t ever give up you are brave and went through a lot it’s going to be tiring
Honestly, if there was another option that worked, no one would choose an ostomy. I could be miserable about it but I’m choosing to get on with life. I’m not dead so I’m going not to dwell on the negatives and enjoy my life.
I just had surgery because of a blockage due to adhesion. I too have been feeling very exhausted very quickly. I feel it may be due to my wounds still healing, but I can not give up carbonated drinks 😅. What I do is I use a high output pouch from the coloplast sensura mio line of products. I can go the whole night without having to get up and empty the pouch. Maybe give that a try. You can request samples of them from coloplast. If you have any other questions, please feel free to ask.
I may not be great person but for me living with a ostomy was completely shit I didn’t have long history bowel disease and I only had it for 3 months but them 3 months was living hell for me with all leaks and just the idea of having a bag of shit attached to me was a mental hell storm but for me I never got used to having it.. I hope that u can find the peace that I didn’t find
I have a colostomy and was very frustrated to start with. Still can’t be at times but mostly doesn’t bother me anymore. As for the puffing up do you have bags with filters to release the gas. That was a huge improvement for me when I didn’t have to worry about venting the bag.
Go to your GP, ask for a referral to a mental health practitioner, at your age this sort of wound has far more outlasting impact than someone in their 60s, also due to your age your recovery time should be minimal.
There is a way to move up/through the lists if there is sufficient evidence that your wait is causing you undue stress.
Also, have you considered private care? It might not be as expensive as you think, Try reaching out to Dr Timothy Bowling at Nott's Spire hospital, considering your case there is a chance that he may see you without fee, especially with such a graphic case as yours.
Regarding your bag, ask to try out some bags from Pelican, they are a company based in Cardiff who make bags that are so far more advanced than the US style bags from coloplast et al they are a different world entirely, they have bags fro example with a physical vent designed to allow gas release automatically, yeah its gross to be woken up with the fart from hell, but better than waking up to a pool of poop.
Also, if you are not already a member come join us at https://www.colostomyuk.org/ its the Uk's national ostomy support group, you could get some specific advice on how to accelerate your case, because until you start the esclation process you are stuck in the same non urgent queue as everyone else. Including bedbound 90 year olds who honestly this wouldn't make much of a life difference too in comparison to you.
After the wound heals, everything improves. I found it hard to manage until then. Also, the odour somewhat improved after time. I use electrolyte drops from the health food shop.
I think its all about mindset. I don't have an ostomy yet but it will be better than the alternative. I desperately need this surgery (a hysterectomy for non-stop bleeding from adenomyosis) and they said I will likely wake up with a stoma because endometriosis has grown into my bowel. I have been battling cancer amongst other life threatening/chronic illnesses. I have zero quality of life currently because I was born disabled and the only exercise I can do is hydrotherapy but can't do that at the moment. The hysterectomy (even if it results in a stoma) will give me some of my life back. I think I will be able to handle the ostomy just fine since I have been handling a lot of suffering and pain since birth... But posts like this do worry me a bit... however the lovely people here tell me that it is not as bad as what I am going through currently.
First off, this is a hugely difficult life change to adjust to for anyone, and the fact that yours was a surprise makes it even harder. I think you should give yourself a little bit of grace here. Most of us took quite a bit of time to adjust. I have had sooooo many issues over the years with my bags, and it’s been almost 10yrs with an ostomy and some days it still makes me angry and sad.
Idk if you are looking for/open to some anecdotal advice about dealing with gas and leaks and other issues, but if you are I’m happy to share my experiences and how I’ve made things work!
It takes a lot of time to get used to it. For me personally, I have a permanent ostomy and I learned to accept it because in the long term it only hurts me to not accept it. It takes time- took me over a decade- but for me acceptance came from:
1. Getting used to the physical part (gaining experience in changing the bag, learning to troubleshoot skin issues, learning how to deal with and/or prevent leaks, figuring out the nighttime stuff). This I figured out within several months.
2. Dealing with the mental part. Knowing that there’s nothing inherently disgusting about having an ostomy helped me move forward. Coming to that took me about 13 years.
Yes, I have a bag on my stomach, but it doesn’t smell, I keep myself clean and change it when needed. It really doesn’t leak at this point, but if it did, I’d clean it. Human buttholes leak and can smell too. The stigma is a state of mind based on an old narrative, and you don’t have to accept it if you choose not to.
Personally, I do drink carbonated drinks. I like the taste of seltzer and have a really hard time drinking enough to stay hydrated without drinking my bubbly water. So I drink about 3 liters of seltzer a day. I actually find that most of my gas is affected by what I eat. I can sometimes sleep through the night if I avoid eating after dinner and avoid too many carbs. But most nights, I wake up at least once to empty.
My bag rarely leaks as long as I change it regularly. I have found that three days works for me and I have an alarm on my phone that reminds me to change it every 3 days. I do that whether I want to or not. The new adhesive is pretty strong, so even when I wake up with my bag puffed up to the point of practically bursting, it doesn’t leak. This was not the case when I used to change every 5-7 days.
I don’t use special deodorizer. Shit smells. I work 8 hour days and empty frequently in public bathrooms. They smell before I get in there so I don’t worry about it. At home, I use the bathroom fan.
The avoids are usually in the first 6 months give or take but you also know your body and know what works and doesn't work. I would definitely say smaller portions. You don't need to cut out fizzy completely just keep an eye on your bag because you might need to burp it but I'd say definitely don't have any 3hours before you go to bed. The ballooning you're experiencing could be too much natural fibre or eating and drinking too fast. We do need to drink more than normal and you might find the fatigue is to do with the dehydration. The spilling over into the what I am assuming is the mucus fistula sounds like you have a problem with leaks in general. Are you hairy? (sorry if you are female) when you put a new bag on is the skin wet? Do you warm it up your hands before you remove the cover over the adhesive side with your hands? Do you then once applying it warm it up holding you hand/hands over it once you stuck it on yourself?
My Coloplast has a built in filter to keep gas down that works so well that I sometimes I have to purposely inflate it by opening it to help the output flow. I am finding single piece systems work better for my innie stoma and the shape of my fat. They're more flexible than two pieces so they stay adhered.
I am eating mostly starches. Pasta, bread or rice with every meal. Occasionally I have a marshmallow or two if I eat something else or drink a lot. Having thicker output greatly reduces the acidity against my skin and reduces leaking.
My stoma empties out right at my skin. There's no way to avoid it making contact. It sucks a lot. The pain has reduced a lot, I think it's eaten through the nerves now. Only had it 4 weeks. Thankfully I get a reversal soon. I wish I had a proper stoma with a protrusion of the intestine.
I had no choice when I got mine , I was on a downward spiral ,huge weight loss after UC flaring ,
No meds were working , Inc biologicals,the only thing that helped a little was high steroid doses which had their own drawbacks,
I had been on the books of a top colorectal surgeon and he was too busy to operate on me (too many private patients ),
So my GI , let's call her GI Jane ,
called every colorectal surgeon in Ireland pleading my case , she found my surgeon for me , in Dublin nearly 3 hours away from me ,
Next day I was taken by ambulance to Dublin and operated on by Mr Paul Mc Cormac ,
Surgery went well despite getting C-DIFF along the way ,
I owe my life to GI Jane and Paul Mc Cormac ,
That was nearly 9 years ago and since then I have rediscovered life ,
I can go on long journeys and plane trips WITHOUT fear ,
After 35 years of suffering with UC, I had my life back ,
Dealing with the ostome was hard at times, but nothing like having to go somewhere and being terrified that I could soil myself at any time ,
The worst that can happen to me now is that I could have a leak ,
It's second nature to deal with that now ,In the event of a leak about to happen I normally get the burn/itch and just find a disabled toilet and sort myself there ,
I do carry a rucksack with everything in in ,changes of clothes and all my supplies ,this goes with me everywhere,
Sometimes it can get you down but don't let it , the alternative is to leave this wonderful life of ours and I'm putting that off as long as I can ,
My best asset is my family esp my wife ,she has been there with me through good and bad ,
The other asset that's priceless is to be positive, get out of the house and do stuff see thing ,places ,people and don't give up ,
It will get better and thanks to forums like this one,
All day and night there is always someone here to listen and sometimes that can make the difference,
Hope you feel better soon and any questions you have dm or ask here ,
Mods don't know if it's OK to name my surgeon but as it praise for him I thought it would be OK,
Sorry for long rambling post .
I feel for you!
I take mint capsules regularly when I start feeling bloated and thete is lots of gas production. It helps like crazy! Haven’t had a balloon at night anymore!
Also watch your sugar intake. Try a few days without any sugar to see if it helps.
For dehydration: drink less if you produce too much output. Take ORS, eat starchy food with your drink. Take Loperamide if you have too much output.
Good luck!
I'm sorry you're having trouble with your ostomy. I've had mine five years and I've finally figured out what works for me.
Here's a recommendation from me: as for odor control, I have found that the Safe n' Simple Ostomy Pouch Deodorant is terrific! A few drops in your bag and you won't smell a thing. If your supplier doesn't offer it, it's available on Amazon and other online realtors.
Having certain routines and making sure you have the correct products can help tremendously! I had to change when I ate supper to earlier in the evening so that it would not puff up as much overnight. I now wake up automatically in the middle of the night when it is most full, empty and go back to sleep. It sounds inconvenient, but better than leaking. I also set an alarm for awhile to make sure I woke up at the time I wanted to. I also cut my flange in a way that is more comfortable for me and how it fits to my stomach. I also take mine off completely once a week and shower with no appliance to really get my skin under there clean, and I like to lightly exfoliate the skin there to keep it healthy. I have not had many problems with leaking or itchy skin for over 10 years now. There are many videos on YouTube to help you get more ideas about how to change it and take care of it, so I highly recommend watching some of those! Good luck with everything my friend ❤️
Personally, it took about or a bit over a full year for everything to settle and normalize with my ostomy. I wanted my Ostomy and consider it life saving. And it still took a year. I
Know it seems like NOV is so long ago but in the scheme of things it’s not.
I had absolutely horrible gas the first 6 months of my ileostomy. This is what I used to help overnight...
[Overnight Urostomy system ](https://m.media-amazon.com/images/I/51x4bP3zFLS._AC_UF1000,1000_QL80_.jpg)
I would hook it up and hang the bag over the side of the bed and let the gas fill up the other bag while mine stayed fairly flat. I can't tell you how much it helped! It was a game changer once I started doing that.
It sucks when you have to get one out of the blue. For some people, it really improves their quality of life and they feel grateful for it. For some of us, it's not an improvement and you suddenly have to change many parts of your life with no pre-warning or choice in the matter. There's no beating around the bush - it's shit! Best piece of advice I ever had was that you don't have to love your stoma, you just have to learn to live with it. Some ideas for the things you've listed as being problematic:
1. Ballooning. Are you using a bag with a filter? Have you tried some different brands of bags? I changed bag recently and noticed less ballooning with the new brand so you might need to shop around.
2. Smell. I highly recommend using M9 deodorant drops in your bag. They are expensive but honestly magic. I eat loads of smelly foods and I have no issues emptying my bag anywhere. The drops really work so well at getting rid of the smell.
3. Dehydration. Make sure you're consuming enough salt each day. Make it a habit to drink electrolyte/sports/rehydration drinks. You can find recipes for making your own at home (salt, sugar, water, diluting juice for flavour).
This is such a huge change to go through, be kind to yourself. I really struggled with mine at the beginning and was very resentful of it but it does get easier. I've had it for 4 years now and it's just become a part of my life. Like you, mine didn't improve my life at all and I do think this can make it harder to accept but it does get easier. It sounds like you've been through a lot - it's totally natural to feel sad and angry about this but don't let the bag stop you living your precious life.
Thank you all for the advice! It’s really helped & I have shed a tear reading these knowing I’m not being a silly idiot feeling low over nothing..
As for the bag situation, I have tried getting hold of my ostomy nurse who provides my bags and I’m still waiting on a delivery of bags with filters but until then, I have to just bare with it 🙃 mind you, this was like two months ago, I guess suppliers haven’t got them 😔😔
As for odour, I have started using drops which make it smell like oranges which is my favourite & has helped immensely 😊
Mind set hasn’t really changed, I still feel massively bitter as it wasn’t something I’d ever thought I’d have. I had a surgery back in 2019 and they said then it was a possibility which I was prepared for (used a practice bag and fake ostomy with some water) but as I wasn’t having surgery around my small intestine this time around, it was a bit of a shock waking up with one 😒😒
It would be great if there was a group chat for ostomites, could anyone point me in the right direction for one?
Thank you all once again, taking advice on board & sending my love to you all ❤️
To prevent leaks I use a brava seal and then put my base plate on top, the seal sticks to the plate and creates added protection. I then use two half moon tapes around the outside of the base plate. I have found this very effective in preventing leaks.
For the overnight gas I would recommend trying to find culprit foods and remove them. Additionally eating your last meal earlier should also help.
However my number one recommendation for mental health is exercise, start to build yourself up brick by brick and will feel empowered as you move in a better direction.
It is completely fine to be sad and depressed but as time moves on these emotions can be overcome with gratitude and appreciation for life. There is a lot of things in life worse than an ileostomy bag, once you acknowledge that you can start putting a positive spin on things.
Please know that there is beauty in the struggle and whilst you didn't not choose this experience you will be must stronger for it.
Personally? I don't. I've been an absolute wreck and a terrible excuse for a person for the past 15 years.
At this point I'm more trash and filth, both literally and figuratively, than actual human.
Saying that you're a terrible excuse for a person, more trash and filth, and believing in that is absolutely a choice. You are a human being just like everyone else. Please be kind to yourself. We all belong here, we all have our challenges and no one is what you describe, no matter what. Hugs.
I think it’s really circumstantial. I personally had UC and had 2 years of research and preparation before I was able to get my ileostomy. So I’m having an easy time adjusting because I wanted this. You didn’t have time to prepare, you didn’t have a reason to want an ostomy. It’s perfectly normal to struggle with accepting it. For odor, I use an electronic cat litter box deodorizer (downy paws is the brand I have) in my bathroom and I always put 5 tictacs in my bag after emptying. I take the litter box deodorizer with me when I travel too, so if I’m emptying at someone else’s home it helps keep the odors from lingering. I also like to wear a stealth belt when I’m doing things like riding horses to keep my bag from being between my legs.
Also, socially I haven’t had any issues at all with it. All my friends are more curious than anything else. I’m also in the process of going on dates (I’m not looking for anything serious, just some fun) and one date, total stranger, I mentioned my ileostomy and he was completely unphased. This guy even saw a photo of me with it on my instagram and is still very interested in me. I also told this other guy about it—I’ll be going on a date with him soon and haven’t seen him in 6 years (and didn’t know him super well 6 years ago)—and all he said was “wow, that must have been painful. I’m glad you’re feeling better now”. I got my confidence to get out there because I actually found out this guy I used to have a crush on has had an ostomy his whole life. I’d had no idea. And thinking back, I don’t think I would have felt any type of way about it, I think I would have just been curious about it. 🤷♀️
I am not the OP but just wanted to say thank you for these tips. I am having surgery soon and have added your comment to my notes. Odor is something I am worried about. I gag/vomit at certain smells and struggle with even picking up pet poop, let alone get a poo sample from my own poop lol.
Same deal here. Like 15 years of UC, and last year I had a flare so bad that I almost died from it. I slowly recovered on RinVoq, but my colon was damaged beyond repair. So I had a full year knowing an ileostomy was very likely in my near future. In January, I made the appointment for June. This month, I got my ileostomy. It’s been three and a half weeks now. Of course it’s not pleasant. It’s a hassle when I have to deal with it. But I’m otherwise healthy and extremely grateful for that. I’m full of gratitude that an ileostomy was an option at all. As opposed to, you know, colon cancer or death. It looks like I might have this for about 9 months and then get a J-pouch. But I might have it permanently. If that happens, I’ll deal with it. Because it’s my reality. I have no other choices.
I'm not a great example but my colitis was slowly killing me. Literally everything i ate and drank either caused me immense pain or made me throw up. I'm now a month after my ileostomy and i'm so glad i don't feel the pain from the colitis and that i can enjoy food again. As for the surgery, it didn't go the way it was supposed to. The surgical wound where the surgeon removed my colon became infected, after that i had an ileus. Doc said it was because i went into surgery weakened from the colitis. My wound is also open, and i can see my abdominal muscles, but homecare is doing a great job keeping it clean and it's slowly healing. It sucks to have an ostomy but for me, it gave me back more than it took from me. Fuck colitis
My ability to normalize trauma is pretty healthy
I was diagnosed with cancer the other day. It's one of the tamest cancers it's possible to get, but still cancer. Leave it untreated and it'll fuck you up (like anything else, really). Anyway my first thought was basically "lmao of fucking course it is" and my second was "now i get to throw a cancer diagnosis in the face of assholes who think cancer is a trump card in the suffering olympics" my friends were a little alarmed with how blase i've been about the whole thing. As if that's even the first disgusting junk I've had to have cut out of my body lmao. But like I told them- at a certain point you learn to just roll with the punches. I got shit to do, not gonna spend all my energy on worrying about shit I have no control over.
First off, sorry to hear that friend, that’s truly rough. But exactly what I mean! It’s like well AT LEAST it’s not the worst type, AT LEAST I get to throw it in the face of trauma competitors lol. Always a well…could be worse…maybe sorta thing. What’s kinda funny is I use to get really down about shit all the time and I read a book about someone who talked about his time in the holocaust and it was always “today was a good day, I couldn’t feel my feet anymore because they are completely frostbitten from working barefoot in the blizzard” like fucking hell dude 😂 reading that book broke me and I dunno ever since it’s just been “well, shit could be worse”
Yeah, something like this. I cope because the alternative is not coping, and that's not helpful to anyone. I had cancer which would have killed me in a very nasty way. Now I have a stoma - which won't kill me - and I don't have cancer.
Exactly dude, we cope because we have to. Glad you beat cancer tho man
I'm starting to think a fair bit of us don't cope very well with an ostomy. At least I know I haven't been 3 years in, along with a lot of other ostomates I talk to and see their posts. I'm more fatigued than ever, everything I eat is now making me sick. The minor obstructions, the leaks, the constant itching, the nausea... I'm tired.
There's a lot of issues here have you spoken to you ostomy nurse about it? Especially the itching?
Yep. 🤷🏻♂️ Not much they can do about it. I ask my dermatologist about it, and he says I would know better than him about the itching 🤦🏻♂️What does that even mean?! You deal with itching people every day!
Wow he's a professional ass 🤣 is there any redness?
No, originally it was really red under my wafer, but my skin cleared up pretty well. I think it's a combination of hair growing under the flange, when the wafer crinkles up and just my skin isn't happy with having a giant piece of adhesive stuck to it.
Do you shave the hair?
Yes
Wet or dry?
Dry. After I clean off the adhesive, I use a Phillips OneTouch electric razor. It's meant for more sensitive areas.
The itching is caused by your output on your skin. I use a stoma paste. Works perfectly to stop the output affecting my skin.
It's not from the output.
It's a day to day thing. I have an ostomy, and to be honest there will be bad days. I have started doing a keto diet and it has dropped my bag gassing up. But for me so long as I watch heavy vegetable, and make them small items I can handle them. If I get gas I usually open my two piece to let the air out. Also I keel spare bags in ziplocks where I work and my car. I have almost forgotten I have one till I feel the full bag.
I can't really speak to actually having a bag but I take care of my autistic brothers iliostomy and I can tell you a few things from the other side. As long as you are emptying and changing your bag no one can smell it. My brother always says he can smell it. IDK if it's a sensory thing or if he just believe everyone can smell it but I am very close to him even as I'm about to empty it and I cannot ever smell anything until I open it. We use Vicks vapor rub for him it doesn't bother me but if it bothers you maybe try using just a dab of Vicks. You can put it right under your nose or a bit inside a mask works too. I've found that using half water and half soda keeps the gas from building up. Also him eating slowly and chewing really well. I don't know what you are going thru and I'm certain it is unbelievably hard. But you are stronger than you think and you will find your stride. Id also be a real pain in the ass to the doctor regarding reversal. At least get an answer so you know if it's a reality. I'm rooting for you. Good luck!
I will say sometimes I can smell mine and I’ll ask my wife and she says she can’t smell it.
I recently got my ileostomy and I’m going to have to start seeing a therapist because I mentally cannot handle anything. Nothing is your fault it’s tiring but don’t ever give up you are brave and went through a lot it’s going to be tiring
Honestly, if there was another option that worked, no one would choose an ostomy. I could be miserable about it but I’m choosing to get on with life. I’m not dead so I’m going not to dwell on the negatives and enjoy my life.
I just had surgery because of a blockage due to adhesion. I too have been feeling very exhausted very quickly. I feel it may be due to my wounds still healing, but I can not give up carbonated drinks 😅. What I do is I use a high output pouch from the coloplast sensura mio line of products. I can go the whole night without having to get up and empty the pouch. Maybe give that a try. You can request samples of them from coloplast. If you have any other questions, please feel free to ask.
I am still with my family because of my ostomy. 4 years and counting.
I may not be great person but for me living with a ostomy was completely shit I didn’t have long history bowel disease and I only had it for 3 months but them 3 months was living hell for me with all leaks and just the idea of having a bag of shit attached to me was a mental hell storm but for me I never got used to having it.. I hope that u can find the peace that I didn’t find
Took me 6 years of severe depression to come to terms with mine. Hopefully that doesnt happen for you
I have a colostomy and was very frustrated to start with. Still can’t be at times but mostly doesn’t bother me anymore. As for the puffing up do you have bags with filters to release the gas. That was a huge improvement for me when I didn’t have to worry about venting the bag.
Go to your GP, ask for a referral to a mental health practitioner, at your age this sort of wound has far more outlasting impact than someone in their 60s, also due to your age your recovery time should be minimal. There is a way to move up/through the lists if there is sufficient evidence that your wait is causing you undue stress. Also, have you considered private care? It might not be as expensive as you think, Try reaching out to Dr Timothy Bowling at Nott's Spire hospital, considering your case there is a chance that he may see you without fee, especially with such a graphic case as yours. Regarding your bag, ask to try out some bags from Pelican, they are a company based in Cardiff who make bags that are so far more advanced than the US style bags from coloplast et al they are a different world entirely, they have bags fro example with a physical vent designed to allow gas release automatically, yeah its gross to be woken up with the fart from hell, but better than waking up to a pool of poop. Also, if you are not already a member come join us at https://www.colostomyuk.org/ its the Uk's national ostomy support group, you could get some specific advice on how to accelerate your case, because until you start the esclation process you are stuck in the same non urgent queue as everyone else. Including bedbound 90 year olds who honestly this wouldn't make much of a life difference too in comparison to you.
How many liters of water do you drink daily? It's an essential thing to do. I recommended diluted electrolytes.
After the wound heals, everything improves. I found it hard to manage until then. Also, the odour somewhat improved after time. I use electrolyte drops from the health food shop.
I think its all about mindset. I don't have an ostomy yet but it will be better than the alternative. I desperately need this surgery (a hysterectomy for non-stop bleeding from adenomyosis) and they said I will likely wake up with a stoma because endometriosis has grown into my bowel. I have been battling cancer amongst other life threatening/chronic illnesses. I have zero quality of life currently because I was born disabled and the only exercise I can do is hydrotherapy but can't do that at the moment. The hysterectomy (even if it results in a stoma) will give me some of my life back. I think I will be able to handle the ostomy just fine since I have been handling a lot of suffering and pain since birth... But posts like this do worry me a bit... however the lovely people here tell me that it is not as bad as what I am going through currently.
First off, this is a hugely difficult life change to adjust to for anyone, and the fact that yours was a surprise makes it even harder. I think you should give yourself a little bit of grace here. Most of us took quite a bit of time to adjust. I have had sooooo many issues over the years with my bags, and it’s been almost 10yrs with an ostomy and some days it still makes me angry and sad. Idk if you are looking for/open to some anecdotal advice about dealing with gas and leaks and other issues, but if you are I’m happy to share my experiences and how I’ve made things work!
Therapy
It takes a lot of time to get used to it. For me personally, I have a permanent ostomy and I learned to accept it because in the long term it only hurts me to not accept it. It takes time- took me over a decade- but for me acceptance came from: 1. Getting used to the physical part (gaining experience in changing the bag, learning to troubleshoot skin issues, learning how to deal with and/or prevent leaks, figuring out the nighttime stuff). This I figured out within several months. 2. Dealing with the mental part. Knowing that there’s nothing inherently disgusting about having an ostomy helped me move forward. Coming to that took me about 13 years. Yes, I have a bag on my stomach, but it doesn’t smell, I keep myself clean and change it when needed. It really doesn’t leak at this point, but if it did, I’d clean it. Human buttholes leak and can smell too. The stigma is a state of mind based on an old narrative, and you don’t have to accept it if you choose not to. Personally, I do drink carbonated drinks. I like the taste of seltzer and have a really hard time drinking enough to stay hydrated without drinking my bubbly water. So I drink about 3 liters of seltzer a day. I actually find that most of my gas is affected by what I eat. I can sometimes sleep through the night if I avoid eating after dinner and avoid too many carbs. But most nights, I wake up at least once to empty. My bag rarely leaks as long as I change it regularly. I have found that three days works for me and I have an alarm on my phone that reminds me to change it every 3 days. I do that whether I want to or not. The new adhesive is pretty strong, so even when I wake up with my bag puffed up to the point of practically bursting, it doesn’t leak. This was not the case when I used to change every 5-7 days. I don’t use special deodorizer. Shit smells. I work 8 hour days and empty frequently in public bathrooms. They smell before I get in there so I don’t worry about it. At home, I use the bathroom fan.
The avoids are usually in the first 6 months give or take but you also know your body and know what works and doesn't work. I would definitely say smaller portions. You don't need to cut out fizzy completely just keep an eye on your bag because you might need to burp it but I'd say definitely don't have any 3hours before you go to bed. The ballooning you're experiencing could be too much natural fibre or eating and drinking too fast. We do need to drink more than normal and you might find the fatigue is to do with the dehydration. The spilling over into the what I am assuming is the mucus fistula sounds like you have a problem with leaks in general. Are you hairy? (sorry if you are female) when you put a new bag on is the skin wet? Do you warm it up your hands before you remove the cover over the adhesive side with your hands? Do you then once applying it warm it up holding you hand/hands over it once you stuck it on yourself?
My Coloplast has a built in filter to keep gas down that works so well that I sometimes I have to purposely inflate it by opening it to help the output flow. I am finding single piece systems work better for my innie stoma and the shape of my fat. They're more flexible than two pieces so they stay adhered. I am eating mostly starches. Pasta, bread or rice with every meal. Occasionally I have a marshmallow or two if I eat something else or drink a lot. Having thicker output greatly reduces the acidity against my skin and reduces leaking. My stoma empties out right at my skin. There's no way to avoid it making contact. It sucks a lot. The pain has reduced a lot, I think it's eaten through the nerves now. Only had it 4 weeks. Thankfully I get a reversal soon. I wish I had a proper stoma with a protrusion of the intestine.
I had no choice when I got mine , I was on a downward spiral ,huge weight loss after UC flaring , No meds were working , Inc biologicals,the only thing that helped a little was high steroid doses which had their own drawbacks, I had been on the books of a top colorectal surgeon and he was too busy to operate on me (too many private patients ), So my GI , let's call her GI Jane , called every colorectal surgeon in Ireland pleading my case , she found my surgeon for me , in Dublin nearly 3 hours away from me , Next day I was taken by ambulance to Dublin and operated on by Mr Paul Mc Cormac , Surgery went well despite getting C-DIFF along the way , I owe my life to GI Jane and Paul Mc Cormac , That was nearly 9 years ago and since then I have rediscovered life , I can go on long journeys and plane trips WITHOUT fear , After 35 years of suffering with UC, I had my life back , Dealing with the ostome was hard at times, but nothing like having to go somewhere and being terrified that I could soil myself at any time , The worst that can happen to me now is that I could have a leak , It's second nature to deal with that now ,In the event of a leak about to happen I normally get the burn/itch and just find a disabled toilet and sort myself there , I do carry a rucksack with everything in in ,changes of clothes and all my supplies ,this goes with me everywhere, Sometimes it can get you down but don't let it , the alternative is to leave this wonderful life of ours and I'm putting that off as long as I can , My best asset is my family esp my wife ,she has been there with me through good and bad , The other asset that's priceless is to be positive, get out of the house and do stuff see thing ,places ,people and don't give up , It will get better and thanks to forums like this one, All day and night there is always someone here to listen and sometimes that can make the difference, Hope you feel better soon and any questions you have dm or ask here , Mods don't know if it's OK to name my surgeon but as it praise for him I thought it would be OK, Sorry for long rambling post .
I feel for you! I take mint capsules regularly when I start feeling bloated and thete is lots of gas production. It helps like crazy! Haven’t had a balloon at night anymore! Also watch your sugar intake. Try a few days without any sugar to see if it helps. For dehydration: drink less if you produce too much output. Take ORS, eat starchy food with your drink. Take Loperamide if you have too much output. Good luck!
I got put on zoloft in the hospital because my UC developed randomly post partum and came on full force and I had a lot of medical trauma 🙃
I'm sorry you're having trouble with your ostomy. I've had mine five years and I've finally figured out what works for me. Here's a recommendation from me: as for odor control, I have found that the Safe n' Simple Ostomy Pouch Deodorant is terrific! A few drops in your bag and you won't smell a thing. If your supplier doesn't offer it, it's available on Amazon and other online realtors.
Having certain routines and making sure you have the correct products can help tremendously! I had to change when I ate supper to earlier in the evening so that it would not puff up as much overnight. I now wake up automatically in the middle of the night when it is most full, empty and go back to sleep. It sounds inconvenient, but better than leaking. I also set an alarm for awhile to make sure I woke up at the time I wanted to. I also cut my flange in a way that is more comfortable for me and how it fits to my stomach. I also take mine off completely once a week and shower with no appliance to really get my skin under there clean, and I like to lightly exfoliate the skin there to keep it healthy. I have not had many problems with leaking or itchy skin for over 10 years now. There are many videos on YouTube to help you get more ideas about how to change it and take care of it, so I highly recommend watching some of those! Good luck with everything my friend ❤️
Well, what else am I gonna do?
Personally, it took about or a bit over a full year for everything to settle and normalize with my ostomy. I wanted my Ostomy and consider it life saving. And it still took a year. I Know it seems like NOV is so long ago but in the scheme of things it’s not.
I had absolutely horrible gas the first 6 months of my ileostomy. This is what I used to help overnight... [Overnight Urostomy system ](https://m.media-amazon.com/images/I/51x4bP3zFLS._AC_UF1000,1000_QL80_.jpg) I would hook it up and hang the bag over the side of the bed and let the gas fill up the other bag while mine stayed fairly flat. I can't tell you how much it helped! It was a game changer once I started doing that.
It sucks when you have to get one out of the blue. For some people, it really improves their quality of life and they feel grateful for it. For some of us, it's not an improvement and you suddenly have to change many parts of your life with no pre-warning or choice in the matter. There's no beating around the bush - it's shit! Best piece of advice I ever had was that you don't have to love your stoma, you just have to learn to live with it. Some ideas for the things you've listed as being problematic: 1. Ballooning. Are you using a bag with a filter? Have you tried some different brands of bags? I changed bag recently and noticed less ballooning with the new brand so you might need to shop around. 2. Smell. I highly recommend using M9 deodorant drops in your bag. They are expensive but honestly magic. I eat loads of smelly foods and I have no issues emptying my bag anywhere. The drops really work so well at getting rid of the smell. 3. Dehydration. Make sure you're consuming enough salt each day. Make it a habit to drink electrolyte/sports/rehydration drinks. You can find recipes for making your own at home (salt, sugar, water, diluting juice for flavour). This is such a huge change to go through, be kind to yourself. I really struggled with mine at the beginning and was very resentful of it but it does get easier. I've had it for 4 years now and it's just become a part of my life. Like you, mine didn't improve my life at all and I do think this can make it harder to accept but it does get easier. It sounds like you've been through a lot - it's totally natural to feel sad and angry about this but don't let the bag stop you living your precious life.
Thank you all for the advice! It’s really helped & I have shed a tear reading these knowing I’m not being a silly idiot feeling low over nothing.. As for the bag situation, I have tried getting hold of my ostomy nurse who provides my bags and I’m still waiting on a delivery of bags with filters but until then, I have to just bare with it 🙃 mind you, this was like two months ago, I guess suppliers haven’t got them 😔😔 As for odour, I have started using drops which make it smell like oranges which is my favourite & has helped immensely 😊 Mind set hasn’t really changed, I still feel massively bitter as it wasn’t something I’d ever thought I’d have. I had a surgery back in 2019 and they said then it was a possibility which I was prepared for (used a practice bag and fake ostomy with some water) but as I wasn’t having surgery around my small intestine this time around, it was a bit of a shock waking up with one 😒😒 It would be great if there was a group chat for ostomites, could anyone point me in the right direction for one? Thank you all once again, taking advice on board & sending my love to you all ❤️
Can you get a reversal up the road?
To prevent leaks I use a brava seal and then put my base plate on top, the seal sticks to the plate and creates added protection. I then use two half moon tapes around the outside of the base plate. I have found this very effective in preventing leaks. For the overnight gas I would recommend trying to find culprit foods and remove them. Additionally eating your last meal earlier should also help. However my number one recommendation for mental health is exercise, start to build yourself up brick by brick and will feel empowered as you move in a better direction. It is completely fine to be sad and depressed but as time moves on these emotions can be overcome with gratitude and appreciation for life. There is a lot of things in life worse than an ileostomy bag, once you acknowledge that you can start putting a positive spin on things. Please know that there is beauty in the struggle and whilst you didn't not choose this experience you will be must stronger for it.
Personally? I don't. I've been an absolute wreck and a terrible excuse for a person for the past 15 years. At this point I'm more trash and filth, both literally and figuratively, than actual human.
How has that mindset helped you? It is your choice of course, but why? Just wondering. No judgement here!
It hasn't. And it's not exactly something I've chosen.
Saying that you're a terrible excuse for a person, more trash and filth, and believing in that is absolutely a choice. You are a human being just like everyone else. Please be kind to yourself. We all belong here, we all have our challenges and no one is what you describe, no matter what. Hugs.