My Ostomy Fell Off During... & More Embarrassing Chronic Illness Moments | Let's Talk IBD

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  • เผยแพร่เมื่อ 10 ส.ค. 2022
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ความคิดเห็น • 179

  • @helengarrett6378
    @helengarrett6378 ปีที่แล้ว +112

    I don't have a stoma. I have irritable bowel and I have had several episodes of intestinal bleeding with diarrhea. In fact, I'm having a flare this week for no reason I can identify. I'm lying on the sofa nauseated waiting for my insides to decide what's next.
    Imagine a date with a very interesting new guy who took me to a very fancy restaurant. I got the urge during dinner and excused myself to go to the bathroom. I came back and and resumed the dinner but I was pretty aware that I was going to need to get home pretty soon. The chocolate mousse came and again I needed to make an abrupt dash to the restroom. I came back and as tactfully as possible I explained I needed to cut the evening short and go home NOW! Well, he got me home and I made a quick exit to the bathroom and he followed me into my apartment but I never came out again. After about half an hour there was a discrete knock on the bathroom door and I yelled "I can't come out!" Another twenty minutes later another knock and he demanded to come in. Oh no! The bathroom smelled like someone died in there. " Go away", I yelled. But he stayed. Another fifteen minutes later another knock and another demand to let him in. By this time I was bleeding a lot and getting very weak. "I can't get up to let you in and I'm bleeding." "What do you mean bleeding?" he yelled. I explained. The door came off the hinges and he gave me a bowl and a bucket. The bowl was for the vomit and the bucket was for the other end. By this time I was too weak and sick to be embarrassed. He took me to the hospital ( WINDOWS OPEN, OF COURSE) where I immediately ran for the bathroom. That's where the doctor found me slumped on the toilet. I was admitted for five days until the doctors could get my insides stopped then slowly reintroduce food. I didn't feel well for months. The embarrassment came days later when I felt well enough to be appalled. He had to notify my parents about my situation. What a hero. What a terrible third date. We eventually married.

    • @fancydeer
      @fancydeer ปีที่แล้ว +19

      😭 I'm sure he was more afraid for you than worried about a "bad date". I hope you feel better.

    • @denagann
      @denagann ปีที่แล้ว +17

      OMG! I so feel this! My husband has stuck with me through it all no matter how awful or disgusting. He has never once acted anything other that a worried loving husband.

    • @garsu1229
      @garsu1229 ปีที่แล้ว +16

      Omg I love that he is so caring and you married I love it❤

    • @RedRoseSeptember22
      @RedRoseSeptember22 10 หลายเดือนก่อน +9

      True love right there ♥

    • @cockeyedoptimista
      @cockeyedoptimista 9 หลายเดือนก่อน +7

      Yes, my reaction too was literally "Oh my god," out loud when I read that last line. That is one heck of a story with a happy ending! Amazing guy to be so caring and responsible - and you got married! He must have found you interesting as well.

  • @lauriefindley9034
    @lauriefindley9034 ปีที่แล้ว +17

    I was shocked to know how many nurses don't know anything about a colostomy bag. Thank God I was there to help my Granny.

    • @Grandpa82547
      @Grandpa82547 8 หลายเดือนก่อน +2

      I've found that most doctors don't know anything either.

  • @pamfenter176
    @pamfenter176 ปีที่แล้ว +67

    2015 was my "year of recogning" from a jacked up colon to an ostomy. I returned to work after several months off and always took extra clothes, bags, etc. Well one day I was on my 2nd change of clothes and last ostomy bag and that one would not stay stuck to me. I finally had to tell my boss that I needed to leave. I was in tears as I walked out of the building. Tears were falling as fast as my shoes were filling up with output. I finally got to my car and drove 40 minutes home sitting in my own poo. That was by far one of my absolute worst days!

    • @psrwhite
      @psrwhite ปีที่แล้ว +9

      Oh my dear. God bless you for being so honest. You are a survivor and warrior for sure!!

    • @Nelldivine
      @Nelldivine ปีที่แล้ว +2

      Niche is a good way of putting it😉

    • @trudymarse4359
      @trudymarse4359 ปีที่แล้ว +3

      I'm so sorry. I've had some bad moments but so far not like that.

    • @bcaye
      @bcaye 10 หลายเดือนก่อน +3

      That is horrible and I'm sorry you had to experience it. Day from hell.

    • @Louis-The-Tiger
      @Louis-The-Tiger 5 หลายเดือนก่อน

      That would be so uncomfortable omg good job to you being a huge trooper mg

  • @tammypatten5138
    @tammypatten5138 ปีที่แล้ว +62

    I was at work "luckily I work for my neighbor/friends" I went home for lunch emptied my bag went back to work. While climbing the stairs my clip came off and what poo had accumulated went all over their stairs. I was mortified. They sent me home to shower and change and said not to worry they would clean it up. What great friends. I love understanding friends.

    • @bcaye
      @bcaye 10 หลายเดือนก่อน +4

      Incredibly caring and loving folks.

    • @Floyd-iu9tu
      @Floyd-iu9tu 9 หลายเดือนก่อน +1

      Your a stronger person than most. I read some of these comment's and then one of those rare one's will come across my screen and it makes u stop read it and read it again and try putting myself in your shoes on that specific day.. I always find myself trying to think what dealing with problems of others. No leg .... No arm.... Of course tbats a shitty ordeal. But in your situation... And others dealing with that same condition. U stronger mentally than most. God bless those people that u had been working for.... U say there your friends... Well i dont kno u or them. But i can tell u one thing. Noone needs to kno you guys to see that they are true people. Because there's many people that would have been absolutely terrible to u in that moment. They deserve to be told what they did waz special. Idk why i even care. I guess cuz that is a great story. Wish u good health. As well as your friends. Bye

    • @jacquelenbialozynski6671
      @jacquelenbialozynski6671 3 หลายเดือนก่อน +1

      😢

    • @jacquelenbialozynski6671
      @jacquelenbialozynski6671 3 หลายเดือนก่อน

      Awful

  • @florencebastien2162
    @florencebastien2162 ปีที่แล้ว +102

    I always remember the time when I knew my husband was “the one”. This was so early in my chronic illness journey that I didn’t even know I was sick yet and I thought the instances of unpredictable vomiting I was having were just one-off moments!
    My now-husband had me over for dinner for a date at the beginning of the time that we knew each other, and 2/3 of the way through I felt nauseous. I excused myself to the bathroom and immediately threw up. I thought “wow, that was weird” but I was doing better, so I went back out there. Well, immediately when I resumed our conversation I knew I had to vomit again, so the first embarrassing moment was that I had to excuse myself to the bathroom again, moments after I had clearly just come back from the bathroom. So this time I kept throwing up, and eventually I had been gone so long that he came to check on me. He offered to let me sleep at his place, and I said “no, no,I’ll go back to my apartment”, but I couldn’t get up off the bathroom floor. So eventually I did just stay over at his place, for the least romantic sleepover in history. But that was 13 years ago and now we’re married! I got so much sicker after that and he’s been with me through it all. And he ended up becoming a nurse, which has been really helpful for navigating the healthcare system.

    • @stacyvakassian2334
      @stacyvakassian2334 ปีที่แล้ว +9

      What a great story of true love !

    • @niasha7317
      @niasha7317 ปีที่แล้ว +7

      awww, what a sweet guy turned into a superhero husband you had without knowing it., don't have no significant other - .. but although sleeping over at his place wasn't romantic as you put it, maybe it was - because I mean, you're finally married ( you know ) - he saw something in you that was centered around his entire world although you were Ill ( nobody BUT a choosen one, and a God-sent individual ), would be involved with someone whose sick ( my view ), that's why I haven't found anyone yet, but I do have hope - ... so may God bless your union., and every one else's out there.
      Be blessed ma'am

    • @car17yn71
      @car17yn71 ปีที่แล้ว +5

      Before I got my ostomy, I had "cyclical vomiting syndrome" and would also vomit out of nowhere ... then feel better ... then vomit a BUNCH shortly after that.

    • @RedRoseSeptember22
      @RedRoseSeptember22 10 หลายเดือนก่อน +3

      That's a beautiful story ♥

    • @cockeyedoptimista
      @cockeyedoptimista 9 หลายเดือนก่อน +1

      That is real true love. What a beautiful story!

  • @jbbevan
    @jbbevan ปีที่แล้ว +10

    My late wife (2015) had an ileostomy in 1964 before she turned 21. By the time she suddenly passed away in 2015, based on all research we could find anywhere on the, she may have been the oldest living ostomate ... not based on absolute age but based on the length of time she lived with her ileostomy. There are two sides of that story...during the 13 years we were married, we did not have any "disasters" during our intimacy with each other...but she had a few operations...and they caused all kinds of random problems. Most of these were due to aftermath of surgery or unplanned reactions to medications. Once she got a staph infection and I had to service her Pic Line twice a day for two months. Those times were challenging, but the ostomy itself was not the root cause of any problems. She managed it very well and very discreetly.

  • @TRUTHisTRUTH70
    @TRUTHisTRUTH70 10 หลายเดือนก่อน +3

    I can so identify with these stories. I have a urostomy (7 years now) due to bladder cancer. Just a few weeks ago I had my first massive leak during the night. Somehow it woke me up because I am a DEEP sleeper. Nightgown soaked, top sheet soaked... you get the picture. Jumped up, holding my nightgown rolled up and tucked around me and ran into the bathroom, stripped off down to the skin, new bag on, and then threw a folded blanket over the sheet so I could go back to sleep since I had to work in the morning. Thankfully there was a waterproof pad under the sheet (mattresses are expensive, yo!) and the next day I stripped the bedding, sprayed mattress enzyme cleaner. When I told my husband he told me he thought I was brave to handle it so well. I wasn't brave, I laughed about it - because what else can you do in a situation like that? My motto is: the worst day above ground is still better than one below ground". Once you've had that first awful experience, nothing fazes you.

  • @debraarnold3703
    @debraarnold3703 ปีที่แล้ว +12

    I had diarrhea in my husband's golf hat that I retrieved from the back seat, while I driving a stick shift to work an hour away. I'm managing my stricture ok, I've had numerous obstructions, and an ostomy could be in my future. So, you're my Guru, girlie.

    • @Grandpa82547
      @Grandpa82547 8 หลายเดือนก่อน +1

      As soon as you have the chance to get an ostomy, jump at it. I wish I could have had it done 10 years sooner. I've had a few awkward, embarrassing moments since, but not the Hell I ( and obviously, you, too)went through back then. It's a whole new life.

  • @mikemartin5073
    @mikemartin5073 ปีที่แล้ว +7

    Sometimes sex can get messy even without the ostomy. Not a big deal. I'm glad you laugh about it and show other people to not be too uptight and nervous. Great videos

    • @RedRoseSeptember22
      @RedRoseSeptember22 10 หลายเดือนก่อน +2

      Right? Those of us who've had it on our periods know lol...

  • @sharonzona4346
    @sharonzona4346 ปีที่แล้ว +24

    TWICE in the last 6 months I've had my clip on my bag fail and open up while in public. The first time I was in the lobby of my doctor's office. I was wearing jeans and it was bad. The second time was worse in some ways. I was at the movie theater and was on the way to the bathroom when it opened up. SO embarrassing! But like you said, you get through it and move on. Thank goodness for my husband. He was there both times and as I was cleaning up myself as best I could, he was cleaning up the floors. We have saints as husbands I think.

    • @annebebee6764
      @annebebee6764 ปีที่แล้ว +1

      Please get bags with Velcro closures! All the brands have them! Ask your suppliers!

    • @sharonzona4346
      @sharonzona4346 ปีที่แล้ว +1

      @@annebebee6764 I will do that the next time I order! Thanks!!

  • @kithale316
    @kithale316 10 หลายเดือนก่อน +5

    Oh Lord that brought back memories recovering from cancer surgery tying to swallow this disgusting stuff through a tube. It was like whitewash mixed with banana chalk. I feel for you so much cause I've been there. "Eat more calories and.mine came right back up too. We are still here love so we are blessed.❤

  • @rcelestefelix9299
    @rcelestefelix9299 ปีที่แล้ว +27

    This "healthy" person got the worst case of diarrhea in my daughter-in-law's car while driving on a long freeway in California just last month. I was literally holding my bottom to keep my diarrhea from oozing out, but some of the liquid managed to wet my pants and the car seat. When we finally made it to her home, I had to keep holding my bottom until I could dash to the restroom where I exploded. That's what I get for drinking a tall glass of iced expresso coffee with a large scoop of vanilla ice cream after a big lunch. Yes, healthy people have "accidents" too. Mercifully the car seat was leather, and no one got upset with me. But I was mortified.

    • @RedRoseSeptember22
      @RedRoseSeptember22 10 หลายเดือนก่อน +3

      Oh goodness! I'd be mortified too lol. One time when I was sick with some nasty bug, I projectile vomited and had diarrhea while in bed :( the mattress had huge stains on it afterwards.

  • @lisamoulton2540
    @lisamoulton2540 3 หลายเดือนก่อน +2

    The first clinical rotation I did for my CNA was in a locked dementia ward. I was grabbing towels for a (different) patient shower and this elderly person is just shuffling down the hall with their hand on their stoma saying in a weak voice "help me. Help me" My heart dropped, I said I would right away and ran down to get the R.N. I felt so bad for that patient 😢.

  • @annebebee6764
    @annebebee6764 ปีที่แล้ว +7

    The two times I have had a major accident aka "blow out" have happened at home. So the first time my husband, got a bucket for my clothing as I stripped off in the shower. That was embarrassing! The second time, my daughter had the honors of getting a bucket for the poo covered clothing while I stripped off in the shower. I think she is scarred for life. Seeing her middle aged mother with poo from bra line to knees, with her ostomy actively producing. I am very afraid of any public accidents. Also never trust a clip. Always take a bag to change.

  • @bjohnson1149
    @bjohnson1149 4 หลายเดือนก่อน +2

    I've had similar experiences. I'm 75 years old and my ostomy is 7 years old. It's not any easier at my age. I always talk to myself to get through embarrassing noises and big messes. Thank you for sharing and helping me to understand that I'm not alone.

  • @mcrchickenluvr
    @mcrchickenluvr ปีที่แล้ว +5

    This isn’t from a chronic illness but a recurring one. That’s a long story that I’ll save for another time. I was super sick from a bad case of bronchitis. When I was about 17, I was in the ER because my O2 levels weren’t staying where they should and I was coughing so hard that everything hurt. After I’d been triaged, the doctor came in to start trying to find out what’s going on. I coughed so hard I puked. Not just a little either. Projectile doesn’t being to describe it. The floor, the walls, my mom, the doctor, the door… you name it, it now had some of me on it. Being a medical professional, I’m sure the doctor was used to it. But to a 17 year old that was embarrassing as hell.

  • @kathyouthere
    @kathyouthere ปีที่แล้ว +10

    If you don't laugh you will lose your mind! I use laughter to help make me feel better. I have been down for 19 months and still trying to figure out why. I had to pee really badly and just made it to the bathroom. Went to sit down and my knees buckled and I ended up on the floor. I couldn't get up. I just started peeing and couldn't stop. My bathroom floor got very wet and so did I. I was finally able to stand up but I was a mess and my floor was like a pool!!!

  • @nukers1234
    @nukers1234 ปีที่แล้ว +14

    That's the best part of getting older, you stop caring about situations like these, you know it will happen again.

  • @thexavierfamily172
    @thexavierfamily172 ปีที่แล้ว +20

    i was 8 years old, i was in school, we were playing inside the class, somehow my bag opened up and the poop was all over the floor and my shirt, i remember running to the bathroom crying and only getting out of there when my mom came to pick me up.

  • @KatyB1113
    @KatyB1113 ปีที่แล้ว +18

    September 14th, 2011, I had my third back surgery (out of 5), and the physician assistant was SUPER attractive. I saw him a few months later and we were talking, and he asked how my back was doing. I told him I was having pain again, and then he said “are you seeing anybody?” I said “No, no….oh you mean for the pain!!!” I’m like, nice Katy, smooth!!!!
    On October 27th 2002 (a few weeks shy of my 17th bday), I was trying to hurry up with my shower bc I had a Baby Think It Over for my parenting class, and it was a demon baby. Well, I went to pick up my shampoo bottle and out with my back. I couldn’t get back up and had to have my mom come in and help me stand up straight. It all went to hell after that at times. I remember I was just sitting at the lunch table with my friend, and all of a sudden, the pain was so bad bc my back went out. I seriously was just sitting when my back crapped out on me. The nurse had to come down to the cafeteria with a wheelchair, and help me get up and into it.
    My stories aren’t as crazy as yours, but that’s what makes them kind of fun at the same time. I’ll tell you, I don’t get embarrassed easily, and really, those weren’t embarrassing. Funny, but I just dust myself off and go on to the next adventure. Like you said at the beginning of your video, if you can’t laugh at these moments, you’d lose your freaking mind. Last week, my dad was going up to my grandparents house in Rock Island, IL (we live in St. Louis) and I went to give him a hug goodbye, and my back went out when I was reaching up. The pain was on my left side mostly, but I could hardly move the rest of the day. My mom and I had to take our little 15 year old shih Tzu to the vet bc he jumped off my parents bed, and hurt his left hind leg. Well my mom has bad knees which makes it hard for her to walk or get up from a chair. So we’re in the vets office, and she would grunt when she got up and moved, and I’d grunt from just breathing. I’m sure the staff at the vets office had some good laughs after we left. Thanks for sharing your embarrassing stories with us!

  • @bebe1057
    @bebe1057 ปีที่แล้ว +32

    You are the sweetest, bestest and most darlingest ostomate out there.. You have made me look forward to my surgery with confidence rather than doom. Thank you, thank you, thank you ❤️❤️❤️❤️❤️❤️

  • @brynnejewell1275
    @brynnejewell1275 ปีที่แล้ว +11

    I enjoyed story time with Maggie. I have Tourette Syndrome, among other things, and one time when I was little, I had a full body shaking tic so bad that I flipped myself off the couch. Not a big deal to me cuz it was/is my normal, but I learned, years later, that it really upset my mom seeing me go through that. The things we don't realize our parents go through with a special needs child...

  • @stacyvakassian2334
    @stacyvakassian2334 ปีที่แล้ว +7

    Everybody has accidents. Life is messy , and it’s ok !

    • @sandraadams4940
      @sandraadams4940 ปีที่แล้ว +1

      Your right but when its happening to you it not ok.

  • @craftycrochet64
    @craftycrochet64 ปีที่แล้ว +3

    I have had my Ostomy since 1999 and i still remember early on i was going to college anf and one day i got out of the car and my bag fell off i was so mortified because the parking lot was full. Now its like oh well.

  • @lauriefindley9034
    @lauriefindley9034 ปีที่แล้ว +4

    My Grandmother was always afraid of leaking. She put a griddle on. Not a tight one and placed paper towels over that area. I would think a flat pad in that spot would help. I pray everything works out for you. She was a beautiful woman. She never dated after my Grandfather died. She was embarrassed of her stomach. I also stay sick. My stomach is a major problem.

  • @moosebell99
    @moosebell99 ปีที่แล้ว +15

    OMG I can relate. My two piece bag fell off just outside of my favorite restaurant. I was so embarrassed. I didn’t know what to do. The bag had filled up quickly and was pancaking. I really appreciate your channel

  • @stitchingaddict
    @stitchingaddict 6 หลายเดือนก่อน +1

    Thank you so much for sharing your experiences. I have celiac disease and I was on vacation this summer in Mexico. We were staying at my aunt and uncle’s house for the whole time we were there. I don’t speak Spanish and so I was only going places with people who could communicate for me when ordering food. My cousin, my aunt, my mom, and I went into a larger city for a day of shopping. Lunch went fine because the waitress spoke enough English that I could explain that I couldn’t have any gluten. Then we stopped for supper at my cousin and my aunt’s favourite restaurant. Here the waitress only spoke Spanish. My cousin’s daughter is gluten intolerant, so she asked what would be safe for me to eat. The waitress told my cousin that the chicken dish would be safe. I ordered the chicken dish and it was really delicious! By the time we left the restaurant, I was feeling a bit off, but just thought that it was a touch of altitude sickness. I’d had it the few day we came to Mexico and figured that the rough roads and the drive up the mountain were to blame.
    Around 1 am, I shot out of my bed and made a mad dash for the guest bathroom. I made it just in time. This continued until early in the morning. I was finally able to just lay in bed, in pain, and try to sleep. My mom came into my room and asked if I was packed and ready to go. We were supposed to leave for home that day. I told her I’d been glutened. She asked if I had my medication with to help stop my intestines from cramping and hurting so much. I said no I didn’t, but I had my medication list on my pharmacy app. I went in and took a screenshot of what I needed. I didn’t have high hopes because it’s a prescription.
    My parents went to the local hospital/pharmacy and showed them what I needed. They brought it over the counter! I was so happy! The nurse also recommended a few other remedies and my parents got those as well. I don’t remember much of the rest of the day because the dramine and other stuff made me completely out of it.
    I didn’t make a mess, but it was embarrassing to have an episode in a foreign country and at my relatives house. They were very understanding about it, but it was still embarrassing for me.

  • @lockstep2354
    @lockstep2354 ปีที่แล้ว +5

    I have so many experiences over the last 32 years with my ostomy one time went bowling with family and I am getting low like thinking I'm a pro low, well guess what happens, it wasn't pretty I looked at the ceiling and walked to the bathroom when I came out they were moping the lane ..lol.. yeah Good Times!! so many

  • @angiepangie989
    @angiepangie989 ปีที่แล้ว +2

    12:32 First time I've ever heard someone use nauseated properly

  • @sharoncole8249
    @sharoncole8249 ปีที่แล้ว +7

    💖👑👑💖🎬🎥📽My stoma is so loud but l do tell people what it is because am not rude and wouldnt do it if l could help it and people are always lovely to me but am older now 51 .Been a teenager its so different for them .My daughter had cystic fibrosis and she had a feeding tube she was so private about her illness but she was also a teenager. Thank you maggie love your company 👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼💖👑💖xxx

  • @terrycook3215
    @terrycook3215 6 หลายเดือนก่อน +1

    A week after getting home from emergency surgery and learning to live with an unplanned stoma i went to the department atore to pick up some hydration packets. I was standing by the plethora of products when i felt liquid running down my leg. Id never had this happen and i was in public! I still didnt know what was occuring but i hurries out and drove myself home. What a mess! My first explosion the whole wafer let go. Probably because it took a bit to get home and clean up my skin was red and sore. Everything i had on had to be cleaned even my boots.
    Because of this i looked online wondering how to prevent another accident and have found quite a few living with a stoma. Thanks for sharing your trials and insight.

  • @rebeccalunsford8071
    @rebeccalunsford8071 ปีที่แล้ว +9

    Maggie thank you for being open and raw. I can tell that was hard for you to do. But it helps others. I have IBS and have had a couple embarrassing moments. I would have an accident because I didn’t make to the bathroom in time. I would cry for hours afterwards.

  • @AndiSchneider
    @AndiSchneider ปีที่แล้ว +4

    There are so many things that only other people who are sick with GI illnesses understand. I have gastroparesis, short gut, and EoE. I have fed the bed so many times I’ve lost count, and it just never goes away. I have had my tube site leak bile all over the place, literally at appointment my white shirt turned yellow with bile. I fell asleep venting into a cup because I didn’t have a ferral bag, must have dozed off, jerked awake, and threw the cup all over my boyfriend. I get so embarrassed by how loud my intestines are because the move so fast, it’s like growling and gurgling everyone can hear. I think what embarrasses me the most is dealing with dumping syndrome, it can be so brutal, and sometimes it hits and you just don’t make it. By now I’ve come to accept that if you don’t want to deal with my tubes and lines then we aren’t meant to be. It’s just too much to worry all the time about this stuff happening and people running away screaming. Sometimes you just have to be able to laugh about it.

  • @barbarawolcott6999
    @barbarawolcott6999 ปีที่แล้ว +4

    Your not alone Maggie! Mine fell off in the hospital as three male nurses came to my room and I had to be cleaned up. So embarrassed!

  • @lisatowan4536
    @lisatowan4536 ปีที่แล้ว +10

    I can relate to so many of these. Thanks for sharing the good and bad of ostomies and chronic illness. It has made me feel less alone.

  • @wallytheman
    @wallytheman ปีที่แล้ว +6

    I double clip with two different types of clips, because of the very reason you stated

  • @martinadefonthana2945
    @martinadefonthana2945 ปีที่แล้ว +9

    Dont ever feel gross about it! i mean i wish you did not :) because my husband and i we always joke.. we had emergencies on walks where nature was... used haha :) and sometimes it got messy we laughed it off its part of being human. i am just happy we are doing the stuff together and making it fun and not scary. We all are human and it makes a whole new connection with people when u get to a point where u just talk about it ♡♡

  • @susanschellenberg6980
    @susanschellenberg6980 ปีที่แล้ว +13

    Thank you for sharing, Maggie! Those of us who have GI issues have had our share of “incidents”. It helps to know that we are not alone..

  • @joanfinch7396
    @joanfinch7396 7 หลายเดือนก่อน +1

    You truly are an inspirational person. I have just watched your clip about embarrassing situations. My husband died 10 years prior to me having ostomy surgery. I am saddened to say I am glad he never got to see this as I know in my heart he could never have accepted this situation then factor in all the accidents I have had in the last 4 years. The financial burden of ruined clothes, bedding, mattresses & carpets. I never go to bed now without wrapping incontinent sheets around me. I avoid staying at other people's houses. I recently had a parastomal hernia repaired & unfortunately had complications, which has wiped the last 4 years out & I am now back at the beginning. 😢 I know things will improve but it just knocks you back. I look forward to watching your videos, you have been through so much it makes my problems seem almost insignifican, thank you for sharing
    your extraordinary journey, you give me the much needed boost to get up & keep going. My heartfelt thanks ❤ joan

  • @cprzybylski9889
    @cprzybylski9889 ปีที่แล้ว +6

    I can relate to the very first story you told. After my first year teaching I was diagnosed with dermatomyositis and I was going into my second year. The condition affects my muscles and causes them to be weak and atrophy. At the time only 3 people knew at my school and I didn't want others to know. Well I knelt down beside a kiddo and was not able to get back up. So here I am in a gym with a few hundred people and can't get up and fell down. I too felt like everyone was staring at me. Im not sure if everyone was staring at me but it felt like it. I felt horrible mentally because I was unable to stand up. I pretended to laugh and act like all was fine.

    • @caitlinengland682
      @caitlinengland682 ปีที่แล้ว

      I know the struggle with this exact situation though I was a student at the time. I have childhood onset dermatomyositis, but the real issue for me was having to be picked up out of the bath by my dad…

  • @trudymarse4359
    @trudymarse4359 ปีที่แล้ว +4

    You are such a strong young woman. I take my hat off to you. I'm about 6 months in from having my ostomy bag.

  • @tamarawelsh6873
    @tamarawelsh6873 10 หลายเดือนก่อน +1

    I have that issue when I have to get something off the bottom shelf at a grocery store or other stores. I have even fallen on my ass trying to get up in front of people. Not a good thing.

  • @damiangibney7020
    @damiangibney7020 ปีที่แล้ว +2

    yes it happens ,one of my worst experencies was when i was still in the hospital getting used to the bag and trying to walk after the opp ,i forgot to seal the end of the bag and went for a walk down the far end of the hospital ,and yes you guessed it i was covered in shit i was so embarrested and horrified to walk back to the ward covered in waste ,i walked into the ward grabbed clean clothes and just ran to the shower ,i learned from that and never did that again .

  • @KJ4SEI
    @KJ4SEI ปีที่แล้ว +3

    Only two major moments for me, the first was before surgery trying to camp with my son who was in the Boy Scouts. Imagine a tent big enough to stand up in and outhouses at the other end of camp... in the dark... down the path. It's 2 am and been raining since 10pm. Well, I thought ahead and had brought a porta lou 5 gal bucket with a seat. So, as I get up to go the floor is floating on the water running under the tent. That was a close one. Surgery was in '07 and summer 0f '08 I did 5 days backpacking on the Appalachian Trail with my son. What a difference! The second was laying on a gurney in ER with a blockage and volcanic hurling all the way across the hall to the other wall while doubled over in pain at about a 9 out 10. Yuck!

  • @juliecarmody6773
    @juliecarmody6773 11 หลายเดือนก่อน +2

    The first time my stoma talked it was so sudden & loud i dropped my phone in fright haha 😂

  • @piotrkrol566
    @piotrkrol566 ปีที่แล้ว +6

    Omg you are so brave! Thank you for sharing this. Lot of hugs for you.

  • @cockeyedoptimista
    @cockeyedoptimista 9 หลายเดือนก่อน +1

    You are funny, Ms. Maggie. I'm only two minutes in, but I already guffawed when you told your doggo you were sick of hearing your voice too.

  • @yomama8873
    @yomama8873 ปีที่แล้ว +4

    This is a great video I have have 2 incidents that happened when I was a teenager that I still think about and I’m now 76 years old. I think your attitude will help a lot of people. Thank you 🤩🤩🤩🤩🤩🤩🤩💖💖

  • @lisamurray2407
    @lisamurray2407 ปีที่แล้ว +2

    I hear you guys it’s 💩 literally, fellow nurse here Maggie X …giving meds one night on the ward (pre proctocolectomy)💩 my pants 🩲 & couldn’t leave drugs trolley as only registered nurse on at time, god only knows how I got round 15 patients before diving to bathroom 🚽 washing and going underwear free rest off night shift…post proctocolectomy administrating injection (bum area) bent over & stoma bag popped …. as working in community at time had to drive back to base with towel wrapped around waist to collect the 💩 as all spares in bag in office…..& on both occasions aside myself no one knew … 🙏

  • @lisasallery7860
    @lisasallery7860 ปีที่แล้ว +4

    Omgosh, I’ve had so many embarrassing moments with my stoma. From noise in a full lift, my bag leaking during a first date. But by far the worst was when I stayed over at my bf’s house for the first time and it was the first time we had ever been intimate. He still didn’t know I had an ileostomy even after that night as I’d managed to conceal it well. However, in the morning I woke up, he was still sleeping, went into the bathroom to empty my bulging stoma bag. I was sitting on the toilet after I’d just emptied it and he came rushing in the door to tell me “whatever you do. Don’t flush the toilet” omg, I was mortified!!! I then spent about half an hour emptying jugs of water into the toilet as I know if you do that, the toilet will eventually empty. Oh, that was awful. To this day it still makes me cringe. He must have been thinking what on earth I was doing 🙈🙈🙈🙈

    • @TexasLendy
      @TexasLendy ปีที่แล้ว

      😅😅😅😅

  • @debralittle1341
    @debralittle1341 3 หลายเดือนก่อน

    I don't have an ostomy but I'm a senior citizen who can relate to squatting down and not being able to get back up.
    It happened three times and at least two of those times it was in a public space. My knees locked, my leg and feet muscles went week. I had to be lifted up because I couldn't move. So embarrassed!❤

  • @rickdupree6988
    @rickdupree6988 5 หลายเดือนก่อน

    It's great hearing from people dealing with an ostomy on a daily basis. I have had some horrible experiences but never let it limit my life. Thanks everyone for sharing.

  • @rcs3030
    @rcs3030 ปีที่แล้ว +1

    I know that this is just not going to sound right...
    buuut....for so long I have just wanted ( in a fatherly way) give you a big hug and tell you that all will be alright. You are such a brave person and so mature. I admire you. Stay the course beloved. You will do just fine in life. And that ZAK is also such a fine young man. You got a keeper there.

  • @jeannedaves7796
    @jeannedaves7796 10 หลายเดือนก่อน +1

    You are so awesome sharing intellectually. I love your stories and journey. Descriptive and funny. Your a dear soul. You embrace so much. I do not have a stoma but your stories and dealing with incredible health issues helps me in other areas.
    Acceptance. Transparency . Your gifted with speaking and explaining so much. Thank you for these lessons in life. Admire respect and your God's angel. Helping others. I know patients received great care when you did hospital nursing ❤ now a new journey on You Tube. God bless you abundantly. And Zack and the fur babies.

  • @amygaines8194
    @amygaines8194 ปีที่แล้ว +11

    My grandma would let the air out of her bag when we were driving no warning. 🤢. We would have to roll down all the windows. She would just sit back and have a wicked smile on her face. Lol.
    She had been gone about 17 yrs now, and I can still remember her doing that.

    • @Jevea
      @Jevea ปีที่แล้ว +2

      My husband does that all the time. Dinner table, middle of the store, car and in line at the grocery store. He don't give a rats ass who it offends. I get so very very sick of smelling that shit. There are things that can be put in the bag but he refuses to do it. He has to suffer so he'll make everyone else suffer too.

    • @bobosullivan176
      @bobosullivan176 ปีที่แล้ว

      That's the best thing I've read in weeks!

  • @xenicmark
    @xenicmark 9 หลายเดือนก่อน +1

    My friend and I have regular debates about random stuff and it almost always ends up with us debating whether humans deserve to exist. He argues that they don't. I argue that they do. Not so much for selfish reasons as for the belief that for all the worst humans there are other people that are really good and selfless. Watching the news and social media I get a strong urge to believe him. But every so often I come across stories of people who are such a bright beacon of selflessness and human compassion that my faith is restored. People like You and Zach. There's another lady on TH-cam who is schizophrenic and is sharing her journey through life. Watching her and her husband share their journey is such an inspiration.
    Thank you for sharing your journey. And Zach for sticking by you.

  • @annegreenwood3624
    @annegreenwood3624 ปีที่แล้ว +3

    i totally get it i’ve broken toilets went all over the bus very embarrassing but i had to change my mind set and think this is apart of my illness i’m not the only one

  • @majorwhite51
    @majorwhite51 5 หลายเดือนก่อน

    Had an embarrassing situation a few weeks back, I am an Irishman living in the Isle of Man UK I went back home to Northern Ireland a few weeks ago, while visiting two of my friends at their home, I had bought a new pair of pants, thought they were a little tight but would be ok, as I thought, to cut a long story short, my urostomy come away from my stomach on one side as I went to get up, the urine run down my legs, they were great about it but lesson learned, bigger pants are safer, take care Maggie, your are an inspiration ❤

  • @SusanP674
    @SusanP674 2 หลายเดือนก่อน

    Thank you for being so honest about life's ups and downs 💙

  • @Zinnias2go
    @Zinnias2go ปีที่แล้ว +2

    I was just reading the other comments after I commented and wow great stories everyone! Maggie you opened the can of worms 👏👏👏🤣😂🤣

  • @thewisepowerchair2369
    @thewisepowerchair2369 ปีที่แล้ว +6

    "Loosing it" is what I am doing at the moment, and I have not even had surgery yet.

    • @LetsTalkIBD
      @LetsTalkIBD  ปีที่แล้ว +2

      ❤️❤️❤️ sending you love! Illness is not for the faint of heart - I hope surgery gives you relief!

    • @thewisepowerchair2369
      @thewisepowerchair2369 ปีที่แล้ว +2

      @@LetsTalkIBD Thank you.

  • @Sherry-jx9hs
    @Sherry-jx9hs ปีที่แล้ว +5

    I just got a stoma a few months ago and somehow I developed a stricture in my throat that (2-3 mm) doesn't let me swallow a lot of large pieces of food. It has taken a few months to figure this out but next week hopefully they will get it removed. Meantime I can eat muffins and soft foods in small bites or I toss them back up

  • @lisalove511
    @lisalove511 ปีที่แล้ว +2

    Just forwarded this to my mom too maggs, her name is Linda Love. I’ve always told her how inspirational you’ve been to me because she knows I didn’t get like ANY help in the hospital after my operation. Anyway, I’ll tell her to add you guys, as you know we’re both from Pennsylvania so guaranteed first thing she will do is say something like “she’s jealous of the weather” lol 😆

  • @emilykaten
    @emilykaten ปีที่แล้ว +1

    Thank you for sharing these stories! 💖

  • @libairebane
    @libairebane ปีที่แล้ว +4

    Thank you for sharing, being a teenager is tough on it own, because every little thing is embarrassing and feels like the end of the world:) I don´t have any physical chronic illness, but human bodies do all kinds of "weird" stuff. My hands and feet are sweating uncontrollably like dripping on things and itś a bit hard to walk in flip flops, because they get so slippery from the inside. I feel very embarrassed every time I have to shake someone's hand or touch things that aren't mine. Once in a job interview I suddenly noticed I had a little puddle of stains on my dress from my hands. When I clap on some event i sometimes have droplets all over my clothes afterwards. I still got the job, that I interviewed for, but when I started it was something with my chair, that made my pp fill with air, so every time I moved or had to get up little farts came out of me:D

  • @shawnhayden6674
    @shawnhayden6674 11 หลายเดือนก่อน

    This, I think, is my favourite of all videos on the channel. I relate to all of this.

  • @stephanieoregan
    @stephanieoregan ปีที่แล้ว +4

    Thank you for sharing your stories ❤

  • @stephw7372
    @stephw7372 ปีที่แล้ว +3

    For what it helps, I don’t have an osteomy, but if my SO had the gas leaking or whatever, I’d just be supportive, I mean it’s nothing you do on purpose and gas is natural, ofc it smells bad, but whatever. I’m sure Zak feels the same way. No need to be embarrassed

  • @Lost_and_found85
    @Lost_and_found85 2 หลายเดือนก่อน

    I love your energy!!! Keep on smiling

  • @LaurieButts
    @LaurieButts ปีที่แล้ว +4

    You have an amazing attitude and outlook on life. You are a gem… so is sweet Zach! I love your storytelling!

  • @nancystewart2063
    @nancystewart2063 ปีที่แล้ว +3

    Hi Maggie and Zak!! Sorry I missed this earlier, I was in the middle of making dinner and didn't see the time. Another great video. Isn't it great how you can look back at those times and laugh now.

  • @whomigazone
    @whomigazone ปีที่แล้ว +1

    Driving for 45 minutes with a leaking ostomy bag... had plans for other things, but had to go home...

  • @Chronicallyillbadass1995
    @Chronicallyillbadass1995 ปีที่แล้ว +2

    I have 13 complex medical conditions. I was born with an esophagus so bad I didn’t have one at all. So I had 9 surgeries from 6hrs old (to place a surgical g-tube to access to stomach) to 5yrs old. Then another one is gastroparesis my stomach is paralyzed I have a surgical j-tube and I have a g-tube my stomach is drained 24/7 as I aspirate on stomach acid into my lungs and I get aspiration pneumonia every 3 months or som Iv antibiotics. But my bed is covered in stains from formula and my g-tube disconnecting from its bag and draining onto the bed. I have to chnage my sheets a few times a week from stains but I now have a waterproof mattress protector. But bed is stained. Another time I was draining my g-tube because I ate something that I needed out and accidentally put stomach contents on the ceiling. I had a formula I’m back on, completely elemental I can smell it in my pee and on me no one smelled it on me! I have so many stories

  • @angelairvine3091
    @angelairvine3091 ปีที่แล้ว +2

    Loving your nails and makeup 💄💋💅💖

  • @deefitzgerald2906
    @deefitzgerald2906 ปีที่แล้ว +2

    Maggie You are ABSOLUTELY a BEAUTIFUL YOUNG LADY🌹What YOU have Been through was a lot and God Bless Your Parents who
    Had to be Frightening for them not Knowing what would be the BEST for YOU……
    YOU have come a long WAY and are living YOUR BEST LIFE with your Handsome HUSBAND…..
    My Mom is suffering with some of the thing’s that you went through and it’s HORRIBLE to watch when there’s NOTHING I can do to help her…..
    Her food doesn’t brake down in her small Intestines and like you said she has Blockages…….Then There’s throwing up and now she is Scared to eat anything she’s had huge weight loss and of course that’s because she can’t eat……Her last Hospital stay she got out EASTER SUNDAY and
    Hasn’t come back from this at ALL……I LIVE WITH HER AND SO Grateful so she’s not alone even when I don’t know how to help her……
    You speaking up about these thing’s people go through they are NASTY 🤮 and hard to talk about but they happen everyday to more people than you know and it let’s you see your NOT A LONE…….
    ALWAYS Watching from Virginia 🌹

  • @alyssadana5011
    @alyssadana5011 ปีที่แล้ว +2

    Absolutely you have to find the funny parts in life or you will LOOOOOOOSE it lol

  • @melissapauna8450
    @melissapauna8450 ปีที่แล้ว +4

    Lol! That's hysterical! But yes mortifying. That is love!

  • @nickeybadenhorst8537
    @nickeybadenhorst8537 ปีที่แล้ว

    Awsome video Maggie , thank you so much. 😘 😘 😘 😘 😘

  • @cockeyedoptimista
    @cockeyedoptimista 9 หลายเดือนก่อน

    Well ya gotta laugh, right? "Of course, the stoma picks That time [when the room has gone silent] to make noise," announce its presence: your "shining moment." Lol!

  • @gwenienelson2535
    @gwenienelson2535 ปีที่แล้ว

    Me too first back in the saddle to say so embarrassing and I cried for days

  • @tatonyawhite9037
    @tatonyawhite9037 11 หลายเดือนก่อน

    U are a strong woman and my god continue to bless u

  • @sandrarubio8977
    @sandrarubio8977 ปีที่แล้ว

    Thank you sooo much for sharing.

  • @lanettcox9579
    @lanettcox9579 ปีที่แล้ว +2

    Thank you for sharing

  • @deborahmeyers551
    @deborahmeyers551 ปีที่แล้ว +4

    Maggie you always are soooooo funny you make me laugh 😘💜🥰💚

  • @Redlinehandcraft
    @Redlinehandcraft ปีที่แล้ว +2

    Nothing chronic diagnosed, but I have this thing that happens super rare: sometimes when I squat my right leg spasms near the knee and it hurts so bad... I can not straighten it and get up. I can only slowly move it to one of the sides (the other side makes it spasm even more) until it goes away. So whenever I have to squat in public, it scares me a lot. Never really happened in front of other people, only at home. Lucky me I guess. :D

  • @katie6044
    @katie6044 ปีที่แล้ว +3

    Sorry, I comment as I watch the video because I know I'll forget. Do you think you could make a video about embarrassing things that you may have done when you were younger (like the sweet pea), and help out the younger crowd so they don't make the same (possible) mistakes? I bet you have a lot of stories, I know I do! Maybe have people who are older write in and tell their stories as well?

  • @natashaw401
    @natashaw401 ปีที่แล้ว +1

    Zak sweetie great man still with u

  • @jeanne_margaret
    @jeanne_margaret ปีที่แล้ว +2

    Your a champion ❤

  • @alleyoop5185
    @alleyoop5185 ปีที่แล้ว +1

    You may just have super sniffer:) I smelled gas once and called the power company. They came out and could only detect it with a sensitive monitor:) No one else could smell it.

  • @carolboyd8805
    @carolboyd8805 ปีที่แล้ว

    About 8 weeks ago i was staying in a hotel when i took a blockage. Pain got worse and off course contents were pumping none stop. 76 and i was so embarrased. Wrapped towels tight around me. In the ambulance it (you know) was everywhere. When i got to hosp i only had t shirt on...no knickers. Scanned and tube up my nose. Those poor paramedics😂😂. Please lord never again. Awful. I will be a good girl lord. 😊xx

  • @car17yn71
    @car17yn71 ปีที่แล้ว +4

    Post-op, my stoma was HUGE (it's still bigger than most, but smaller than it was). I was using a Coloplast Sensura Mio Post-Op pouch. It has a plastic window that you can open to access the stoma quickly. Well, a few months after my surgery, we had to take our big dog to the vet. He has PTSD and anxiety due to trauma as a puppy. My brother couldn't take him alone, so I went with them. In the exam room, the vet touched one of the dog's paws. He freaks out and tries to hop on me to protect him. A claw went through the plastic. Luckily, he didn't claw my stoma. BUT my pouch wasn't completely empty, so there was a little bit of poo on his claw. My brother and the vet cleaned up the mess.
    I had to try to fix the hole in the plastic, so I went into their bathroom. I got the pouch cleaned up to the best of my ability. Then, I texted my brother to bring me my "pink tape" that was in my "emergency bag" that my brother was to put in the car. Turned out that he forgot to grab it. We were able to get some tape from the receptionist ... but it was NOT waterproof. I taped the inside and outside of the window. Then I washed my hands and went out to return the tape and pay. As we pulled into the driveway at home, my ostomy decided it was time to be super active. By the time I got to my room, the tape had failed spectacularly. I had grabbed paper towels as I walked in the door. My brother had to get my supplies ready so I could do an emergency bag change.

  • @laurieruesch4611
    @laurieruesch4611 ปีที่แล้ว

    I use the clips I don’t trust the Velcro on the bottom of the bag!! I’m so afraid it will unroll while I am sleeping or just laying in bed watching tv!!! I use convetec one piece!!

  • @melissapauna8450
    @melissapauna8450 ปีที่แล้ว +4

    Why do they make noise at the worst times!

  • @leannhayes5444
    @leannhayes5444 8 หลายเดือนก่อน

    I am completing radiation treatment next week, then in 6 to 8 weeks after that I will have rectal cancer surgery and a temporary stoma. I am terrified.

  • @lisamckay-goodall8925
    @lisamckay-goodall8925 ปีที่แล้ว +1

    Thanks

    • @LetsTalkIBD
      @LetsTalkIBD  ปีที่แล้ว +2

      Thank you so much Lisa!!

  • @niasha7317
    @niasha7317 ปีที่แล้ว +2

    Maggie girl, I clearly understand what you mean - except mine isn't an ostomy, but I've got a foley catheter due to nuerogenic bladder and being unable to urinate with the snap of a finger - my journey included me figuratively pushing a bolder up an severely uphill incline ( I had being experiencing that for 35 years before treatment ) - ... and darlin, all I could advice is - " becareful of what you wished for ", for I used to happily say knowing that it won't happen, due to a partially paralyzed bladder and me being having to force and push the content out " I wish I could pee my bed " 😱 - I mean, yeah, because I NEVER could of done it ( sphincter muscles are inactive ) - ... BUT after the days following the 20th of August 2020, I've regretted my statement every since - let's just say, I need a do over, is there a reset button anywhere? 😔😭😭😭😭., ... anyway, this year makes 2 years since my life has being drastically changed for the better, many a times - I wished that I could've turned back the hands of time, when I didn't have my best friend ( Cathy - that's what I call her - Cathy the catheter ), but when I remember - my previous life was self-draining, that taught immediately escapes me, and I'm back to loving and living in reality., it's 2022 and I could've have being in a better place ( fatigue is no more, can stand and shower, etc ) - all which I took for granted back then, but none - NEVER!!!
    ... so, with that said, I like to encourage everyone to love the skin that they're in - it's gonna be a harsh reality, but HEY!!! - you've got a reality, because think about this - things can change so much in the blink of an eye, so I'm advising you all, if you have the opportunity to grab you're situations and circumstances, and turn it and transform it into a better life - go ahead and go get it done - you're worth every once of it.

  • @deborahshore-robinson5800
    @deborahshore-robinson5800 ปีที่แล้ว

    I have an ostomy and I had gone to a psychic night with a friend. It was a small room and as I stood up to leave my osteomyelitis bag popped.

  • @jeanettcanham9059
    @jeanettcanham9059 ปีที่แล้ว

    Enteral feed sets like concrete. I've killed so much bedding it's crazy. PEG-J so no hiding mine 😂

  • @Neppy22
    @Neppy22 ปีที่แล้ว

    I relate so hard with the unable to stand up. Every now and then my body just cannot take steps. I'm walking along thinking I'm gonna make it to a place to sit down and suddenly my legs just WILL NOT lift to go forward. And its always in public of course... As a youngling I just started quiet crying standing still in the middle of the path... These days I do my utmost to get to the side to be out of the way and sit for however long it takes for my brain to connect to my legs again. Still pretty mortifying but I have run out of fucks to look at people going past and phones have games.

    • @cockeyedoptimista
      @cockeyedoptimista 9 หลายเดือนก่อน +1

      What? Have you been diagnosed with anything for not being able to walk? That can be a symptom of something!

    • @Neppy22
      @Neppy22 9 หลายเดือนก่อน +1

      @@cockeyedoptimista yeah it's a pre pain migraine symptom and for the most part doesn't happen so long as I'm consistent with meds and not overly stressed. It only lasts a few minutes but is really disconcerting during

    • @cockeyedoptimista
      @cockeyedoptimista 9 หลายเดือนก่อน

      @@Neppy22 Oh. Thank you. That must be frustrating and a bit scary; at least you know what it is by now. I'm very uninformed about these things; it's just I had a friend who gradually had more and more trouble walking and it turned out to be hydrocephalus.
      When I was in rehab I didn't know how weak I was at first either, like Maggie was saying; I squatted to get something off the bottom shelf of their refrigerator - no one would help me - and when I got halfway down, my legs just collapsed under me and I fell back and hit my head on the linoleum floor. I was already pretty low so I didn't fall far, but I got a good egg-sized lump on the back of my head. That was such an awful rehab; I had insurance issues and only they would take me. It helped though, I guess. Or I helped myself.. They were okay..
      I'm sorry you get migraines; congrats on managing it so well. It must indeed be disconcerting to have your body surprise you.

    • @Neppy22
      @Neppy22 9 หลายเดือนก่อน +1

      @@cockeyedoptimista the figuring out what was happening to me was really scary, I thought I'd had a stroke or something the first time it happened
      That rehab sounds terrible! You're there to heal and get better not to sustain more damage. I hope you're doing great now

  • @lennywintfeld924
    @lennywintfeld924 8 หลายเดือนก่อน

    My wife got a stoma in July (stercoral ulcer / perforated bowel) and the convalescence is still going on. Needless to say, we're still figuring things out. One thing we need advice about: what's a good room deodorizer. They gave us hollister m9 spray at the hospital, but it doesn't work very well. I hope there's something that works and doesn't have an odor of its own.