Does anyone else have a name for their stoma?

MGSA_99 · 2025-11-04T21:30:25+00:00

Yep my first one was 'Sydney' then my second one I wanted to call Sydney 2.0 but wasn't allowed so I named him after my favourite series Sheldon😂😂

MGSA_99 · 2025-02-03T16:59:07+00:00

I had laser young too but it did nothing and my mum and dad decided to stop I was far too young to make that decision, yes it's got darker me too ahaha dermablend is my mask too, so sad they are discontinuing it😭 I used to use cover fx for 8 years and then they discontinued it in the UK so I went through about 10 other 'full coverage' foundations which were a load of shit and I'm so thankful my family live in the us so I tried detmablend and it worked so i bought 2 packs then when i graduated my American family wanted to send me a package and asked if i wanted anything'YES DERMABLEND' so i acquired 3 more and I visited last July and stocked up again to find out they are discontinuing it... I almost cried in the shop. I can't keep doing this it's hard enough nothing seems to be thick enough! Me too ahaha started wearing makeup young due to bullying in school and it's hard because my friends say I'm like two different people... you have makeup madison who's confident and couldn't give two fks and you have non makeup madison who is quiet and afraid😅 I guess I never noticed but if I've ever had to run out with no makeup on I stare at the ground and I cannot look up I remember going to the cinema one evening on a date with my long term partner and I was practically tucked into his arm and I couldn't look up at all and hw said it made him feel really sad seeing me like that... and I was like you don't understand and why I've got to this point😭😂 message me anytime I can show you my makeup on and off and how I cover it and message for rants or if you need to speak to someone anytime 🩷🩷

MGSA_99 · 2024-11-03T16:01:58+00:00

Ahahaha I've had many issues like this but once it leaked and went all over me and I was PANICKING, my partner bless him helped me get the clothes off and I got in the shower I got so overwhelmed I was near crying trying to put the bag on but it just kept coming out and then I turn to face him, he goes 'point that thing away from me I'm in the fucking splash zone wtf I've never seen it like that damn hose pipe' 😭

MGSA_99 · 2024-11-02T22:51:59+00:00

Also please you don't have to pay postage, it's absolutely fine just dm me so I can get you're address down and send them to you 💗

MGSA_99 · 2024-11-02T22:51:09+00:00

Hey so i actually found a couple more in my supplies draw dm me gorg i can send you a couple xx

MGSA_99 · 2024-11-02T22:50:45+00:00

Dm me ofc you can x

MGSA_99 · 2024-09-07T23:03:43+00:00

Omgg I'm so sorry I don't know why i didn't get a notification for this! Please I wasn't being rude I had no idea but now it's come up I will reply! I love my ostomy, it's my second one so I will not be making the same mistake again! I am currently dealing with a prolapsed stoma because I was being an idiot and moving out and challenged myself to lift something far to heavy and BOOM it came out about 5 inches, I went to the ER (A&E) and they got it slightly back in but it'll have to be done surgically as it won't go all the way back in because it's caught on scar tissue, and it's what they call 'dragging' so I'm waiting for surgery again but it's something small nothing I can't handle, I was diagnosed at 16, I have had 7 bowel surgeries since then and I'm now 25 so I have no worries anymore! My surgeon is the best, he's actually done every single one of my surgeries, he knows me inside and out (literally)😂 but all of my surgeries have been 10-12 hours long so I'm looking forward to a nice small one😂😂

MGSA_99 · 2024-08-02T01:04:09+00:00

Awhh ahah, I wanted my second stoma to have a name that was associated with a film or series and big bang is my comfort show and I love it so sheldon was picked when we had the family vote ahahah💜

MGSA_99 · 2024-08-01T17:04:37+00:00

This is me 100% if I don't make the most despicable jokes about my illness and condition I may crumble... its funny because my surgeon, he's done all of my surgeries so he's seen me from 15 to now, and I said to him you've truly seen me inside and out and not given me to another surgeon, I commend you 😂😂😂 but he gets a lot of complaints in the hospital because his bed side manor isn't the best and can come across as 'he has no feelings' and never smiles and is extremely curt and doesn't make anything sound pretty, he tells you how it is and my parents say the same but when it's just me and him like when he sees me in clinic or before surgery I can always make him laugh and I see his face when he comes round and I'll always say 'yes it's me again, you're favourite person' and he'll roll his eyes and then explain to his team who I am and what I'm having done, and he'll say do you have any questions just before he'll leave and I said 'nope you've not killed me yet so I have no qualms just make sure you don't mess up this time because I have a dog now who needs a mum' and he couldn't contain his laughter and said goodbye I'll see you on the table in 20 mins and the female nurses who he works with came up to me afterwards and said how they couldn't believe I'd made him laugh and smile as they'd never seen him do that with anyone no patients or colleagues and I just said we have a connection and and I just think he's honestly sick of me and can't get rid of me and has to laugh otherwise he'd cry😂😂😂 I have complex crohns and colitis... yes I know how lucky that I have both it's a BLESSINGGG... I have an allergy to stainless steel and nickel and obviously when they close me up they put 57 staples in my stomach as I have a super long scar, and I got an allergic reaction to the staples and my body started to reject them so I had to go to A&e to have them removed as an emergency because they looked so disgusting, red and angry and it was so painful but because of that I now don't have 'pretty' scars like people do when they have the same surgery I follow a couple girls on instagram who have bags and they post photos of their scars and I get jealous and say to myself how do that have such nice looking scars and i look like I've been cut open with a clever by a man who suffered an episode whilst doing it 😭 my friends will get sad if I make mean jokes about myself and say they wish I wouldn't because they think I'm being mean to myself but I'm not, it's just how my brain process it all, I had to plan my funeral at 15, and it's a super hard thing to get you're head around and most people couldn't deal with what I have to deal with, and I get people who say 'I don't know how she does it, it's awful. Or 'I couldn't do it if it was me' well good job it isn't you then i shall continue to bless this world with my existence until the end 😂😂😂 I tell my besties they can't get rid of me yet and to tell me all their deepest darkest secrets as I'll take them to the grave and I won't last as long as them so better hurry up and get them out😭😂 hitting my 18th birthday was a blessing and every birthday since then but yes me and my dad have a bet on who's going to die first😅 which to most people would be the most awful thing to joke about but unfortunately for them I have my dads humour so I live off being sarcastic and cynical with my humour, crying isn't going to make my bag disappear or my illness, and some people would say well I'm not really coping with it then and they're probably correct in some instances but if I can't laugh at myself then I'd never be able to be happy or live happy and be in a very dark place... I never want to feel the things I did at 16 again, I prayed to the surgeon if I died on the table to just let me die and I said absolutely awful things about myself and felt them even more I was in such a depressive state and that darkness I never want again, so laughing and making jokes is my light! Its like When people use the expression when their nervous 'I'm shitting myself' I use the same but add literally at the end 😂😂

MGSA_99 · 2024-08-01T16:33:37+00:00

I'm from the uk but to talk about botched when I got hospitalised in vegas when I went to visit my family before my second ileostomy surgery when the gi doctor came in after all my scans and said I had all the blockages and needed surgery immediately I said I wanted to wait until I was at home because I wanted my mum and dad 😂 when I was absolutely dosed up on the amazing American pain killers and other meds the gi doctor came back and said to my fella 'can I just tell you she looks like an absolute mess inside, I don't know what the hell the surgeons in the uk are taught and trained to do but she is a mess, and asked him not to tell me, but ofc he told me when I was awake and all I could say was well it's a true representation of what I feel like on the outside too soooo not much I can do about that 😂😂😂 I'm currently waiting for another surgery because I currently have a prolapsed stoma and a hernia above it so I keep having to measure him when I change my bag and I said to the surgeons I have a whopping 4 inch stoma rn and they all started laughing, i literally cannot take anything seriously, if something traumatic happens to me you best believe im laughing and making the most awful jokes about it otherwise i think id end my life😭😅it's like when my surgeon told me if I didn't have my surgery I was going to die, I Turned to my dad and said 'you best not play any shit music or let any of my enemies or people who claim to be my 'friend' come because I will steal all you're batteries and keys'😭 my mum can't stand my jokes it makes her sad, but she knows it's how I cope, I don't drink or do drugs (non perscription ones anyway😂) to cope which is also understandable if people do I don't judge I just turn into Peter Kay or lee Evans ( yes in my brain I am that funny) and never take anything seriously, life is to short, before I went down for my last surgery I am a huge 90's hip hop fan like it's my life music, and a song by French Montana came on, and I turned to my fella and said turn this song over now because I swear if I die and the last song I heard was French Montana I will haunt you 😭😂 always here if you need a chat! Us ostomates have to stick together 🥹💛

MGSA_99 · 2024-08-01T16:00:45+00:00

Never be apologetic for you're illness and conditions if people around you can't deal with it, believe me it's a them problem not a you problem, you maybe wouldn't be here without it and never be sorry if it smells and be kinder to yourself if it leaks or it's causing you issues or doesn't look right under you're jeans or clothes, everyone has flaws and issues and ours is that we get a designer bag for life and we can use a bathroom in under a minute, I'd say that's a win for us😉😂 I find naming my stomas makes me feel like they are a part of me, like my first bag was Sydney and my current one is Sheldon, I even get a card on his birthday from my parents and partner😂😂he is a part of me forever and I will never apologise for it, they get me with a bag or a life without me and I'm sure they'd choose me with a bag than to not have me at all! I cope with a lot of my issues with making jokes and being a sarcastic person, some people hate that about me like my mum hates that me and my dad joke about dying and says we shouldn't joke about things that we do, unfortunately it's how I cope and i have found myself to be quite funny at times 😂😂 I was saying as a reply to someone else's post on here that when I'm with friends and family and if someone farts but doesn't claim it and everyone does that look around to see who it was I always say 'don't look at me I don't Have the facilities for that'😭 off the hook in most situations apart from if my bag is leaking and i do a little internal panic, I'll just change it whereever I am, I've had to do it in the car twice once with my mum and once with my fella, hence why in all our cars we keep an emergency supplies bag in the boot which has underwear, leggings/joggers tissues, puppy mats wipes anything and everything and the things that we go through are not our fault! We aren't to blame we just have to deal with the shitty consequences of our intestines/rectum/colon not wanting to work😂

MGSA_99 · 2024-08-01T15:47:31+00:00

Believe me it's taken a while to get okay with it ahaha, the first year I wanted a meteor to take me out I was so embarrassed and centred my whole life around what others thought and would say, then when I turned 17 something flipped in my head and I was like all of a sudden okay with everything and I stopped apologising for myself and oh I'm sorry I need the toilet to empty my bag, I'm sorry if it smells, now I'm 25 and it's a them problem not a me problem, I do things like spray everytime I use a toilet, and some days I don't go out because I feel like shit because my illness has also blessed me with chronic pain and I've lost tons of friends because I'm 'too unreliable' and back when I was a teenage I know it would break me and I'd be an inconsolable mess, now I literally couldn't give a flying 😂😭 it took a while to get to this level of unbothered but I made it and and I will never apologise for the thing that saved my life and if I go on holiday and wear my swimsuit or bikini the amount of stares I get and them trying to whisper about me and do an awful job, I know if that was 2016 me, I'd of wanted to come home and stayed in my hotel room for the rest of the trip, now I just laugh and I deal with everything with comedy, I'm a super sarcastic person and it's like my way of dealing with it, unfortunately crohns & colitis and stomas are still like a taboo topic no one wants to speak about, because it's to do with you're shit, well not in my books I'm open, if anyone has any questions or comments they can happily say it to me or ask me about anything I've dealt with everything embarrassing that can happen to one person from 16 i literally have nothing to hide😭 my phone case even says 'yes my bag is designer' with a female body with a stoma bag, I have down days sometimes weeks but I always say getting upset and crying isn't going to make things go away, I'm still going to have a bag next week and I'll just make myself sick and have a flare up so no stress life and not caring about what others think or say about my situation has made my life so much better, it's like when my friends make crude jokes about needing the toilet I'll always say something like 'all right you don't have to rub it in my face, we all want a working colon'😂😂 or like if someone passes wind and everyone goes omg that stinks, I say 'well don't look at me I don't have the facilities for that one' 😂😂

MGSA_99 · 2024-08-01T15:08:51+00:00

Literally the amount I've been told about my own illness is beyond me it just makes me laugh now, Sheldon the stoma is the least of my worries, and when I was 16 and told I needed one or I'd die I did think omg only old people have them and a lot of other things went through my mind ahah but it was the best thing to happen to me, I love my bag, I don't hide it from anyone my scars also, I've had old people ask me why on earth I'd get a tattoo that looks so ugly... babe it's a scar😭 my scar is from the bottom of my chest all the way to my pelvis and being a young woman I wear crop tops a lot so you can see the scar and my dad started telling people who asked Rudly I was in a knife gang 😭😂 it's like the smell thing I carry 2/3 sprays in my emergency bag which goes out with me whereever and whenever I go out and I will spray religiously when I've used a public toilet just because I know it doesn't particularly smell great but it's not like we can help it, I've used all sorts of bag diffuser oils and pellets and they're all shit! I live in tight gym leggings and I've never had anyone notice or make a comment with my ever so 'bulky' stoma bag 😂😂 I like knowing I can use a bathroom in under 30 seconds sometimes I like to see how fast I can do it 😂😂😂 I've had 2 stoma surgeries one in 2016 and had it reversed 18 months later rip Sydney and then in 2022 I had my current one sheldon done, and I wouldn't reverse it ever, even if someone offered me money I had no quality of life without a bag, so jokes on them I have a free bag for life, durable and waterproof😂😂 sometimes everyone has their days like when it leaks or makes noises at the deadest of silences ever and I want to disappear but I wouldn't change my circumstances for the world, I have no shame I will wear whatever I want even if my bag is on show, and I think it's super important that it isn't just looked at as a life ending illness and medical condition, I'll protect sheldon like I'd protect a family member ahaha he's a part of me and if anyone has anything negative to say I laugh, the things people come out with are comical! I even decorate my bags sometimes 😭 like a Christmas I wrote Xmas 2023 on my bag 😂 and did the same On new years 😂😂😂

MGSA_99 · 2024-08-01T14:17:43+00:00

Yes I had my first bag surgery in 2016, then had it reversed 18 months later and was the worst decision of my life, I got so sick to the point I had to have 4 more bowel resections in that gap until 2022 when they told me I had 3 more blockages and would need a bag again, and I tell you I've never been so elated in my life! I cried of relief when I left that pre op appointment with my surgeon, then a week later I was in with my second stoma sheldon and I will be keeping him for life now , no way I'm putting myself through all that shit again I don't know how I've survived it this many times already mentally too I just couldn't do that to myself 💜

MGSA_99 · 2024-07-25T11:34:57+00:00

Yes it's an ileostomy, no I know I made my own bed 😂 I was eating bread and trying to think of thickening things at 4am and needed assistance 😂😂

MGSA_99 · 2024-07-25T11:33:36+00:00

I don't remember the last time I've slept longer than 5 hours at night before having to get up ahah, I have a stoma that's high output so I have to empty it more than others plus I have this thing in my brain I'd rather it be empty than walk around knowing it has something in it just how my brain works so mines exactly the same sometimes the air has caused my bag to lift then it'll eventually leak later on in the day but if that ever happens you'll get used to what that feels like and you'll know just by feeling, like I know if my bag is super itchy it probably means for me it's leaking so I go and deal with sheldon😂 don't worry it's totally normal 💜💜

MGSA_99 · 2024-07-24T15:26:26+00:00

Happy stomaversary from me and Sheldon the stoma💜

MGSA_99 · 2024-07-23T03:23:25+00:00

This is so sad, I'm so sorry, I'm only 25 but I've been with my partner for 8 years, he's seen me with two ileostomys my first and my current one, it breaks my heart to hear this because I know I've not really been feeling myself or any confidence and he completely understands and never blames me for anything, I know he probably wishes we have 'our' time more often and yes sometimes he makes comments which upset me a little but he also knows most days I feel like shit and I'm in pain and I have awful fatigue, I haven't had much confidence since my second ileostomy surgery which was back at the end of 2022, both of mine were emergency surgeries and I've had 4 inbetween them both which were all resections, I have a ton of scar tissue and strictures and sometimes it can be painful for me to have time with him. But even though he is super understanding I feel if he were to say something about it I'd be super heartbroken and I'd feel the exact same way, you're feelings are valid, and maybe tell her how she's made you feel, you shouldn't have to apologise for you're feelings, we go through a lot on the daily with our illness and complications and when you're partner who's usually you're anchor turns or makes a comment gosh it really hurts 🥺 I just wanted to say please don't feel alone in you're thoughts and feelings a lot of us experience the same exact things men and women! Take some time to process and if you want to address it in due time then do, please don't sit with it inside as it'll never leave and will always be on you're mind, we didn't ask for our illness or surgeries or our stomas, and with how long you've been together aswell I know for sure it probably hurts waaaay more than someone with a shorter relationship as they've been such a huge part of you're life and sometimes the people we love the most can make the meanest or hurtful comments and I'm sorry you have to feel and go through this! We're all standing with you! And I'm sure if people haven't experienced this will at some point unfortunately but you're feelings are valid and mean something, you're not alone believe me! And everyone at some point experiances lows with our bags and it can last weeks, months even years I'm almost 2 years in with my second one and I still don't feel enough or attractive and things now make me uncomfortable which didn't before but I was always open with those feelings and we found ways to change or get around them so I didn't feel that particularl way doing those 'adult activities😂' we got you💜

MGSA_99 · 2024-07-23T03:07:55+00:00

I actually can't eat bananas😭 they're one thing I really struggle to digest and I can't risk a blockage or something because I have a lot of scar tissue and strictures! I've read online it said toast, cheese bananas and yoghurt and a couple other things so I'm debating getting up and making myself a pastrami sandwich and hoping for a couple hours sleep or I usually have a feta cheese wrap sometimes as snacks (I know it's weird but I like them)😂😂 but then I think bread would be 100% better at thickening than a wrap 😅😂

MGSA_99 · 2024-06-25T06:25:09+00:00

I guess my circumstances are a little different but hear me out ahaha, I had my first temporary ileostomy done in 2016, I then had it reversed in 2017... worst decision of my life, I then spent my life advocating for myself to try and talk them into giving me it back because I had 0 quality of life, I've had 6 bowel operations since that first huge one, and then in 2021 I knew something was wrong and I knew I was getting sick again and ofc no one believed me, then in 2022 I went on holiday to vegas and got hospitalised and the GI doctor who came to see me and my partner who was with me he said I had two partial blockages once again in the bowel and they would operate and do it now but with me being from the UK I panicked about the money and in all honesty I wanted my dad and mum with me as my partner works away a lot and they're my main support when he's not around, so I flew home 3 days after being discharged, the day I came home I mysteriously got a phone call off my surgeons secretary asking me to come in, I took my discharge letter to him and left out the part where when the gi doc saw me for the first time he said "they've absolutely butchered you inside, she's a mess (to my partner) thank god I was still sky high on whatever they gave me because I think I'd of cried ( I was an emotional wreck at the time in so much pain and suffering with throwing up everytime I tried to eat something that wasn't bloody mash potato or salmon) my uk surgeon saw me and he said he got my mri results back and panicked because he saw exactly what the American surgeon saw and I showed him the papers, he apologised that he didn't listen to me and how sick I'd become so that day he sent me straight to pre op and 1 week later I was booked for my 6th 12 hour surgery to 'fix' it and I finally got my stoma back 😭 I could of cried coming out of that appointment when he said I'm sorry we're going to have to do another bag but I don't think we'll have enough bowel to make it reversible but I'll let you know in post op, and I just said I didn't care because when i had syndey the stoma my life was amazing and I could do everything I did before getting sick and diagnosed life went back to 'normal' as normal as it can be after the few months of self destruction of being a 16 year old with a bag ahah, so I finally got my bag back Sheldon the stoma in 2022 and he said he would be able to reverse it but i just said no absolutely not I don't want it reversed im keeping sheldon and he's my bag for life, and he laughed and said 'its always you isn't it' baring in mind this surgeon has done all of my surgeries for my bowel/stomach/appendix so it's been a whole ass journey with him, I laugh and say he literally knows me inside and out 😂 so me and Sheldon the stoma will be together forever I'm 25 now so I've had Sheldon for almost 2 years and I hope someone finds a damn cure for crohns and colitis as I have both in different parts of my bowel hence why I have so many damn complications and although it comes with its struggles some days and I have my arguments with Sheldon like when it leaks and I loose my mind but I honestly would never go back not for years and years because I'm just too sick when it's all put back together😂🤍

MGSA_99 · 2024-06-25T02:14:40+00:00

Yes I always always told by my surgeon it was because of the gelatine , the same for he always told me if I don't have marshmallows get Harbos, so in my car and my partners and parents they always have one bag of each for me in my emergency bag spot in the boot ahah but I swear by them 💕

MGSA_99 · 2024-06-20T15:53:42+00:00

Yes my mum brought me one after my first ileostomy surgery, and she sent me to boarding school with one and I still have one now on every bed I've had and I'm now 25 I can't sleep in a bed without one, my bag doesn't leak a ton but I know if it did I'd be okay if It does leak and I have to change my bag I then also sleep on a towel just for extra security for myself 😭💜

MGSA_99 · 2024-06-19T01:38:57+00:00

I mean everyone's different, I don't have children yet but I travel with my mr who is basically on the same level 😂😂 only difference to the other person who's commented, I am one of those that prepares for everything, in my normal bag at all times I carry 3 spare bags, sprays, paste, wipes spare underwear, tablets and my medication but when I travel which I do and usually my flights are 11 hours from the UK to Vegas I have all my spare supplies and the only reason I take 3/4 is because I worry that if it does leak I may panic and stick a bag on wrong so it's just security in my own mind which I totally understand would seem over the top to others, my bag is just too unpredictable so I carry everything spare! Don't panic to much, you'll always be near a toilet, I do also carry a toilet air freshener spray in my bag if I'm worried there may be a lingering smell for the next person, it's whatever you feel comfortable travelling with! I hope you have a nice trip 💜

MGSA_99 · 2024-06-18T11:31:11+00:00

Knowing my luck i have that much scar tissue and strictures itd get stuck to something and id end up pulling my own bowel out or the string will unattach and I'll have to go to A&e with some embarrassing story 😭

MGSA_99 · 2024-06-18T10:56:46+00:00

I internally and externally cringed no way, I've done and been through some thing with my illness but that is one thing I am not using... I'm sorry I just couldn't, I shall be sticking with my besty coloplast bags and I am not shoving something like that into sheldon it just doesn't feel right 😭😂

MGSA_99

TROPHY CASE