What It Looks & Feels Like to Have Your An*s Removed | Let's Talk IBD

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  • Опубліковано 11 гру 2024

КОМЕНТАРІ • 2,8 тис.

  • @FreedomFox1
    @FreedomFox1 Рік тому +2077

    My grandmother had a colostomy after her second surgery for colon cancer. She’s been cancer-free for almost 20 years now… she’s 101 and still sharp as a tack.

  • @l.s.u35
    @l.s.u35 Рік тому +439

    Her humor is life... her energy is so positive...

    • @LetsTalkIBD
      @LetsTalkIBD  Рік тому +47

      Thank you!!

    • @AlisonUralli-lo1vd
      @AlisonUralli-lo1vd 10 місяців тому +10

      The comment about your photos potentially being on some interesting websites- “as long as I’m getting a cut, it’s cool with me” amazing 😂❣️

    • @petermccavington8232
      @petermccavington8232 9 місяців тому

      ​@LetsTalkIBD what about anal s$x??

    • @leehedderwick3399
      @leehedderwick3399 3 місяці тому +5

      An INCREDIBLE SPIRIT ❤

    • @JohnnyAllan-vj7sj
      @JohnnyAllan-vj7sj Місяць тому +1

      I'm in love with her 😐

  • @darinwoody5542
    @darinwoody5542 Рік тому +1064

    I had the same surgery about 25 years ago because of Crohn's disease. It did take a while to get use to, but it saved my life. I'm 6 foot tall and I was so sick I got down to about 100 pounds. Now I'm about 190.
    I don't miss the pain, fistulas,loss of blood,transfusions. I definitely don't miss trying to go to the bathroom and actually passing pieces of my colon in the process.
    While I healed from my surgery I went back to school and got a degree in electronics. Like I said it saved my life.
    Thank you for making this video. Never give up.

  • @Gabriel3Gamu
    @Gabriel3Gamu Рік тому +159

    I'm surgical technologist. In my hospital we do this procedures often even colectomies and creations of stomas. We only interact with patients when they come to the OR for surgery, so we don't really get to see the after care and what patients go through. I am glad you are doing well. Blessings to you and your family

  • @brendalasich1550
    @brendalasich1550 Рік тому +251

    My 7 year old grand daughter had to have her colon removed and has an ostomy now. This procedure is a possibility for her since the stump at her rectum still wants to bleed. Poor kid. She took this all like a trooper! She calls it a Barbie butt, the surgery you are talking about. This is a great learning video!!! I appreciate that people that have had procedures making these videos. They are very stress relieving for those going through it!! Thank you!! My granddaughter is very knowledgeable about her condition even at her age. Bless you and thank you!!❤️❤️❤️

    • @heidijohannes4271
      @heidijohannes4271 Рік тому +26

      A Barbie butt! That is actually so true and valid what a wonderful little girl! That's a perfect description! God bless you and your granddaughter I wish her lots of comfort and a full recovery

    • @blazefairchild465
      @blazefairchild465 Рік тому +12

      Blessed be this beloved grandchild !

    • @user-yv6vx
      @user-yv6vx Рік тому +21

      Teaching people about their conditions and disabilities at any age empowers them. It sounds like she has wonderful caretakers that give her access to lots of information!

    • @brendalasich1550
      @brendalasich1550 Рік тому

      @@user-yv6vx Childrens Hospital in Pittsburgh Pa is a wonderful hospital!! They really work with their patients!! I was very impressed with how thorough they were with her. She knew everything that was happening. She is my hero!❤️

    • @autumngrubb1468
      @autumngrubb1468 10 місяців тому +17

      Bless her heart! So sad a 7 year old had to go through this😞breaks my heart.

  • @carleenvince6748
    @carleenvince6748 Рік тому +1024

    My father had colon cancer when I was six years old and had to have a colostomy done he lived with a colostomy for more than 60 years! After his surgery he recovered and went back to work and he lived an absolutely normal life he lived to the age of 93 I'm so thankful that back in the early 60s they had that surgery so that my father could've be around to raise us 🙏

    • @carleenvince6748
      @carleenvince6748 Рік тому +20

      Could be there to raise us

    • @elliegoldie6140
      @elliegoldie6140 Рік тому +18

      Brilliant I to had one 2006 then ileostomy 2014 which has been more challenging due to drs saying nowt wrong and over two years gallbladder stones blocking bile ducts.Your dad did brilliant and age he was . I’m sure he saw changes in bags over years xxx❤

    • @saranagh7097
      @saranagh7097 Рік тому +4

      🙏

    • @harryhotspur4142
      @harryhotspur4142 Рік тому +12

      MY NEIGHBOR HAD THAT....LIVED ABOUT 30-40 YEARS WITH LITTLE DISRUPTION....HE WORKED IN THE OFFICE'/TRAFFIC TOWER AT L& RAILROAD...

    • @raypursley3639
      @raypursley3639 Рік тому +22

      I had colon cancer and had colon, rectom and anus removed. Very painful recovery still have numbness deep in my rear but very liveable. Don't have the muscle control a normal person would have ,, but not a problem, thanks for being brave and sharing.

  • @nanmattingly6402
    @nanmattingly6402 Рік тому +1212

    You are a VERY brave lady, not only for having to go through that surgery, but to be talking about it on YT. Girl, you rock.

    • @pharris6875
      @pharris6875 Рік тому +17

      And brave for getting waxed. I can't believe that doesn't irritate?

    • @deborahcook3707
      @deborahcook3707 Рік тому +19

      You are a very special lady. Very up beat and transparent. If I ever have to go through what you have gone through I will remember you. And be thankful for you.

    • @yes55504
      @yes55504 Рік тому +9

      You are a very special special special special special lady boi

    • @kmccarthy3760
      @kmccarthy3760 Рік тому +8

      Yes you are so brave indeed to talk about all what you have gone through.

    • @RobJ351
      @RobJ351 Рік тому +5

      Very brave good for you girl, Happy for you with your successful surgery

  • @Jordan-me9pq
    @Jordan-me9pq Рік тому +479

    This just unlocked a memory. When I was in highschool, in my Child Development class there, I was friends with a freshman who found out he had colon cancer and had to go through this surgery. He was devastated and pulled out of school. I don't even remember his name, but he had the sweetest laugh, put up with my goofy sense of humor like a champ, and loved Rubik's cubes.
    I hope he's okay and well, wherever he is.

    • @eileenshea9564
      @eileenshea9564 Рік тому +37

      So sweet you remember remember him. I'm sure he would be touched ⚘🙏✝️

    • @lsubandtrumpet2014
      @lsubandtrumpet2014 Рік тому +10

      You're a good dude!

    • @SewardWriter
      @SewardWriter Рік тому +11

      See if you can get hold of a school phonebook for that year, or a yearbook. You might find him.

    • @hobbesip1
      @hobbesip1 Рік тому +5

      Reach out to 'em. They're going to remember you fondly.

  • @supermanfan2005
    @supermanfan2005 10 місяців тому +45

    I always appreciate when people with chronic illnesses/disabilities are unapolagetic about simply explaining how the human body works, and how some might not work in an "average" way, but that doesn't mean it's a bad body or embarrassing and unspeakable. I have GI issues from one end to the other (not IBD), and while I try not to scar my friends for life, they've heard about the number of ways my body makes the rules up as it goes. And they know that when someone has food poisoning or stomach flu or a random bout of constipation or anything else, I'm the person who isn't going to be grossed out if they describe what's going on and ask for tips to get through the worst of it.
    We have to normalize talking about the body - whether it's working as it ought to or not - and take the stigma and squeamishness out of the equation. Thanks for sharing your journey for others to learn from.

  • @Aaakeith
    @Aaakeith Рік тому +102

    I’m in nursing school and just wanted to say thank you for being so open and honest about this! We all have bodies and they don’t always do the things they’re meant to and there is no shame in that. Cheers 💓

  • @MrTigerlore
    @MrTigerlore Рік тому +794

    Crohn’s disease is awful. She’s so open about her experience. I’ve tried to talk with people (even therapists) about a similar issue and was shut down. She’s brave AF.

    • @conlon4332
      @conlon4332 Рік тому +70

      Oof. Goodness, get a better therapist! That's terrible!

    • @veronicaskoch3757
      @veronicaskoch3757 Рік тому +21

      People piss me off, complain about small crap. GOD BLESS YOU

    • @katherinekohl4832
      @katherinekohl4832 Рік тому +46

      As a therapist and daughter of someone who had a very similar surgery as the brave woman speaking, that infuriates me. I’m so sorry that therapist completely failed you…that is inexcusable!!

    • @conlon4332
      @conlon4332 Рік тому +9

      @@katherinekohl4832 Definitely!!

    • @CosimaNonymouse
      @CosimaNonymouse Рік тому +9

      My Dad had it. An uncle of mine died from it. I find that even sadder knowing now how easy it can be to live with it. I didn't get tested yet but I'm also not experiencing any issues whatsoever so, maybe, just maybe, I got away. We'll see. Someday (I have now reached the age where I should get regular checkups) I'm gonna go to get a checkup.

  • @Ice-gc4ud
    @Ice-gc4ud Рік тому +505

    All I can think about is that nurse deserves a raise for giving a confidence boost! That's the best thing to say to anyone who has a major surgery that changes anything appearance wise.

    • @LetsTalkIBD
      @LetsTalkIBD  Рік тому +109

      She really does - she was incredible!! I will never forget her

    • @SandraGarcia-il4rj
      @SandraGarcia-il4rj Рік тому +12

      ❤❤ you are so open about your journey And I really appreciate your openness about it
      Thanks and bless you for sharing that

    • @WilliamWilliams-k2r
      @WilliamWilliams-k2r Рік тому +5

      Stay positive, thanks for your openness ❤

    • @wolfumz
      @wolfumz Рік тому +9

      It's funny how these little comments can mean so much. To the nurse, she may not have thought about it much, she's got a bunch of patients to look after, she's talking to all of them... but when you're the patient, it has this huge impact.

    • @kerrynicholls6683
      @kerrynicholls6683 9 місяців тому

      I am a recovering drug addict on the methadone program. I haven’t used illegal drugs for 9 years now. I had a surgery done and woke up in extreme pain, I was screaming. After a bit the pain went away, but then the nurse said to me “ I had to give you twice as much as a normal person” It definitely didn’t feel good to have someone get cranky at you, because of my tolerance to pain medication. Especially when I have been doing so well with addiction. I even stopped drinking alcohol. Another surgery, I had to stay in the hospital for a week. After 2 days they removed the pain medication from injection, while I still had a huge tube still inside my stomach, I was given other pain medicine but it didn’t work, they left me in pain for 4 days. I asked them to give me something else. But they wouldn’t. I don’t want to ever go back to the hospital again. It was traumatising, and they had thrown away all my medications, so that cost me around $100 to get more, that I wouldn’t have had to if they, did there job and put my medication, in the medication room. Love ❤️ from Australia 🇦🇺

  • @callummacleod8634
    @callummacleod8634 Рік тому +536

    I have Crohns and had my proctocolectomy in 2009. Yes the recovery was difficult, but my life is so much better all these years later. I was single - never married or in a long relationship. After recovering from the surgery, I met her at a dance. We've been married going on 8 years. Happiest years of my life! For any of you contemplating this difficult surgery, consider that things might work out even better than you would have thought possible. I was in very bad shape before the surgery. And now I'm a Very Lucky Guy. Thank you Maggie for sharing your experience with us.

    • @Stopthisrightnow560
      @Stopthisrightnow560 Рік тому +14

      Awh, that's so cute. 🥰

    • @uggelebuschele4570
      @uggelebuschele4570 Рік тому +10

      I have Crohns too and I was recommended to get it done. I had a Stoma bevor and did not good with it. Are you pain free now?
      Happy for you

    • @kmccarthy3760
      @kmccarthy3760 Рік тому +7

      Lots of best wishes to you as well ❤ Thankyou

    • @TheChef470
      @TheChef470 Рік тому +4

      Amen !

    • @LDuke-pc7kq
      @LDuke-pc7kq Рік тому +1

      Thank you for your beautiful story. True love will meet you where your at, and stay for it all

  • @carolpeters7155
    @carolpeters7155 Рік тому +93

    I was diagnosed with stage 3 rectal cancer in 2019. I’m doing amazingly well now but the thought of a colostomy was the scariest part of having cancer. I wish I had seen a video like this before everything ❤. Keep teaching 😊

    • @beverlymorey1545
      @beverlymorey1545 Рік тому +4

      Thanks for sharing. I am there now with my cancer

    • @Grandpa82547
      @Grandpa82547 Рік тому +6

      Cancer sucks. An ostomy is a piece of cake by comparison. I've had both. Deciding to get some body part removed to save your life is a no-brainer.

  • @Souls-at-zer0
    @Souls-at-zer0 Рік тому +107

    I appreciate people like you who speak openly about issues that the world hides , I have GI issues and NO ONE talks about the struggles …you feel alone as if your the ONLY ONE with these issues . So thankyou!❤

    • @raven4k998
      @raven4k998 Рік тому

      she has a disease from living in to clean of an environment as a kid had she ate some dirt as a kid she wouldn't have got that auto immune disease it's sad about how cleanliness is killing people like her in all first worlds country's

    • @GuiLOST-lz8su
      @GuiLOST-lz8su 10 місяців тому +1

      You have crohns? Where y from use biologics?

    • @karlaceclaydon
      @karlaceclaydon 10 місяців тому

      Know the feeling as I'm the only mutant with this for miles around
      Talking to my stoma nurse helps but friends if I had any would be so much better
      The reason for no friends is my illness with cancer treatment scared alot of them off and my social circumstances changed as well and people just sort of forgot about me
      But carry on just interaction on these sites help and I'm sure that you find someone to talk to about stuff good stuff as well as the not so good stuff
      Take care
      Love n hugs n stuff
      Kxx

    • @GuiLOST-lz8su
      @GuiLOST-lz8su 9 місяців тому

      @@karlaceclaydon hey what is your old where y from?? You have ibd and cancer too?? Yes its hard make friends boyfriend work etc sad nobody care with this dissease still no cure decades decades probaly will still not have

  • @driverain2
    @driverain2 Рік тому +344

    My mom was from a time when there was alot of social stigma and shame around this subject. She had the worst case of crones disease. we almost lost her. I was aware of these feelings in her and gathered my siblings around her and demanded that she have the surgery, that times have changed and we would never think differently of her except that without surgery she would soon be in the grave. Long story short, she had the surgery, recovered in about a year and went on to live another great 20 years. Thank You for continuing to remove the stigma and educating the public about this life changing procedure.......

    • @thegroovyhead
      @thegroovyhead Рік тому +9

      Thanks for sharing this excellent story.

    • @SewardWriter
      @SewardWriter Рік тому +6

      May her memory be a blessing and a comfort. 💖

  • @riase
    @riase Рік тому +392

    You are an actual inspiration. You being this open and transparent is helping so many people in a similar position.

  • @Sandgee62
    @Sandgee62 Рік тому +190

    Barbie Butt for 23 years now. Before I even watch this one, I can be totally honest when I say, “Thank goodness I no longer remember the details of that surgery. My tush has issues with sitting too long in one place, and no matter what exercise I do, my glutious is not maximus, if ya get my drift. Now, to the video. Thank you for making me less alone in it all.

    • @jamiecurran3544
      @jamiecurran3544 Рік тому +32

      Barbie Butt is an excellent analogy!😂, I now have a clear idea of what the end result of this surgery would look like!🤔😁✌️

    • @miss_whipps
      @miss_whipps Рік тому +25

      🤣🤣🤣 my gluteus is not maximus... Love it! Thanks for the laugh!

    • @melodyclark4347
      @melodyclark4347 Рік тому +9

      Darlin neither is mine. No surgery. Just everything goes south eventually. God bless you.

    • @IlaughedIcried
      @IlaughedIcried Рік тому +4

      Barbie Butt!!!! Haaaa, I love it! :)

    • @applejellypucci
      @applejellypucci Рік тому

      Barbie butt -- that's amazing!

  • @cher1292
    @cher1292 10 місяців тому +58

    My husband had a urostomy, prostatectomy & proctocolectomy in 2014 due to rectal cancer. He also had a fistula tract on both sides of his bottom. Oh my heavens he was serious ill for months. The plastic surgeon removed half of his abdomen skin and flesh then flipped it around and made him a “butt”. So he officially has an uneven belly button and part of his chest as his bottom. He has been cancer free for 10 years now. His bottom looks amazing and the best part is NO CANCER! I changed both of his ostomies for the first year until he had the heart to do it himself.

  • @katymitchell8200
    @katymitchell8200 9 місяців тому +29

    I'm an old retired nurse. I think you are so brave to talk about your journey. Thank you

  • @jasonrodgers9063
    @jasonrodgers9063 Рік тому +148

    I'm a rectal cancer survivor (stage 3). Was diagnosed August, 2019, at age 61. Had a pinkie-finger sized tumor just inside my "back door". Surgeon, radiologist, other MDs were push-push-pushing for me to have this surgery done. I was a hard NO. I lost my beloved wife of 34 years when I was 58, & she was 59. She had a LONG list of health problems, she wanted EVERY medical intervention. It was truly a living Hell.
    I cared for her for several years. I cared for my parents until their time came. I helped raise my stepson to be a kind, smart, successful family man. I've accomplished everything in life I was supposed to do. I was told that radiation & chemo without surgery had, at best, a 40% chance of full remission. With NO treatment, I was given odds of 20% survival 5 years out. At age 64, I'm now cancer-free, but the chemo & radiation did a hell of a lot of permanent damage. This woman is young, has a lot of life ahead, is a different story than I was. As damaged as I am, I made the right choice for me.

    • @judiththirlwell417
      @judiththirlwell417 Рік тому +14

      Thankyou for sharing your story. You knew what was right for you and I am very glad you are now well. Take care of yourself🌻💖

    • @jordanerzsebet2727
      @jordanerzsebet2727 Рік тому +7

      That last line especially is so well said.

    • @padmathalamarla8246
      @padmathalamarla8246 Рік тому +1

      U cared all ur loved ones..lucky they r unlike me.

    • @luvlost03
      @luvlost03 Рік тому +2

      ​@@padmathalamarla8246what?

    • @Pixie_Barrow2024
      @Pixie_Barrow2024 Рік тому +6

      ​@@padmathalamarla8246please don't insert your dissatisfaction with your family into someone else's story, it's rude and self-pitying. This man deserves better.
      Sir, I'm glad you made the best decision for yourself and that you beat the cancer. It's probably difficult living with the aftermath of the chemo and radiation, but I hope you're taking good care of yourself. ❤

  • @juliaboenoviana6015
    @juliaboenoviana6015 Рік тому +269

    I don't know why UA-cam suggested your video to me but I'm glad it did. I didn't know much about Crohn's but now I feel more educated about it and more empathetic towards people that have to go through this. Thank you for sharing your story!

    • @carolin9697
      @carolin9697 Рік тому +10

      Same!! ❤

    • @Weezarvil
      @Weezarvil Рік тому +1

      Well, sometimes it gets right.

    • @VL125
      @VL125 Рік тому +4

      Same for the recommendation, haven't searched for it. Stayed for the humor.

    • @dynogamergurl
      @dynogamergurl Рік тому +2

      Same! I didn’t know chrons could get that bad

    • @collettewhosthatgirl1330
      @collettewhosthatgirl1330 Рік тому

      Same 😊

  • @rgoodwinau
    @rgoodwinau Рік тому +86

    I'm one of the "people out there that have no idea that this is a possibility, that you can live without an anus". Thanks for educating me.
    So happy for you that your quality of your life has improved so much.

    • @matthewharris-levesque5809
      @matthewharris-levesque5809 Рік тому

      Going to blow your mind. Some people are born without an anus (or rectum). It's 1 in 5000.
      And it can be mild, moderate or severe.

  • @darlenerich3229
    @darlenerich3229 Рік тому +21

    I am a retired RN and so appreciate your candor. It is so helpful to know what to expect and am so glad that you healed well from your surgery. One of my first nursing school patients had a colostomy. This was in 1975 or 1976. I still remember his name. He was able to get his reconnected 3 to 6 months after his initial surgery and requested me to be his student nurse for his second surgery which the nursing instructor was able to arrange. Your doing this video is a public service. Thank you so much. May you continue to be blessed! I have a friend in the United Kingdom who might well benefit from your video. I will be recommending it to her.

  • @jenny5309-k3j
    @jenny5309-k3j Рік тому +47

    My cousin's 9-year-old daughter was recently diagnosed with Crohn's disease. She's taking steroids which made her face puffy, and caused her to be teased at school. I don't know the details; but I know she had to stop her dance class, which she absolutely loved. I feel so bad for her, and anyone who suffers with this. You're all warriors. ❤

    • @blazeit505
      @blazeit505 9 місяців тому +3

      Prednisone is a rough med. It made my anxiety a thousand times worse.

    • @Yyazween
      @Yyazween Місяць тому +1

      Have you considered the carnivore diet. People with digestive issues often find healing doing an elimination diet like carnivore where they have high nutrient density foods that are not high waste producers

  • @miriamcovington6381
    @miriamcovington6381 Рік тому +67

    Thank you, my eldest brother
    had crohns before it had an official name. He suffered so. My brother next to me
    has UC. Now my daughter
    has a bag, she is quadriplegic after a car accident,broke her neck. I
    Praise you for your strength and beauty, and for helping
    more people to understand.
    My prayers for everyone who
    suffers any chronic illness
    and pain. Thank you again.

  • @derekpowell421
    @derekpowell421 Рік тому +29

    I'm in no way affected by this disorder....not even sure why I clicked on this when I saw it....but, I admire your strength, perseverance, attitude, and outlook....CERTAINLY this video served several people well....I wish you and your loved ones the very best of luck going forward....what an awesome young lady....

  • @jaytee3129
    @jaytee3129 Рік тому +132

    I had my proctocolectomy (rectum and anus removal with a permanent ileostomy) 18 months ago. I am so thankful to you for making videos on the topic because it was so helpful and reassuring to me before my surgery. I feel totally normal now too. Your description of how the sutures have healed is exactly how I have experienced it. They also found a surprise fistula during my surgery too!

  • @Just1Nora
    @Just1Nora Рік тому +48

    Oh that nurse...what a lovely woman. Honestly, that's something everyone needs to hear, especially after having such a delicate procedure. Just to feel reassured that it's normal and you're normal. ❤

    • @LetsTalkIBD
      @LetsTalkIBD  Рік тому +8

      She was fabulous and I will never forget her!

  • @x.y.7385
    @x.y.7385 Рік тому +10

    Dont apologize for the way you are describing what you've had done. So many people, including me, appreciate your honesty and information.

  • @LarryFish3rman
    @LarryFish3rman Рік тому +178

    I'm just a regular guy who stumbles upon your videos every month or so, and It's always so great to see how much you continue to thrive despite the things you've been through. You radiate positivity and so obviously have been made stronger by the challenges in your life. Thats just so great to see.
    Two years ago I had to have about half of my stomach removed due to a Gist Stromal Tumor, and sometimes I get frustrated or upset by the things I can no longer eat, or the negative side effects and struggles I still have. But whenever I end up watching your channel, I just end up feeling so grateful and accepting of the body I do have and am reminded that I still can have a great life despite the things that happened.
    Idk, I could say so much more but honestly, just wanted to say thanks.

    • @mober8552
      @mober8552 Рік тому +7

      Thank you for sharing ! I am glad you are doing better. Take care Mellisa ❤

  • @Rocky1horror1love
    @Rocky1horror1love Рік тому +84

    I just got diagnosed with stage 2 rectal cancer. It hasn't metastasized, which is the amazing news, but we found out it's attached to the sphincter. I really appreciate hearing that at the end of this journey, there can be a new normal. Thank you.

    • @JekyllHyde122
      @JekyllHyde122 Рік тому +18

      Hey hope you’re doing well with you’re treatment but want to give you some words of encouragement I was diagnosed with stage 3 rectal cancer and went through radiation and chemo and finally had the same surgery as the video in January and it’s a lot but it’s amazing how you’re body will figure things out and in no time you’ll feel like the new normal isent as bad! In the end it’s a mental game because physically you’ll be fine! I hope everything goes well!

    • @PrincessRainbowSparkles
      @PrincessRainbowSparkles Рік тому +3

      good luck❤

    • @nigaraltowheed379
      @nigaraltowheed379 Рік тому +2

      @@JekyllHyde122 hey hope you're feeling better.
      Do you have permanent bag or temporary?

    • @glancycorner7425
      @glancycorner7425 Рік тому +1

      Sending prayers and love. 🙏🏻♥️

    • @elizabethbotros1404
      @elizabethbotros1404 Рік тому +1

      Stay strong. I'll pray for you.

  • @bmmaaate
    @bmmaaate Рік тому +127

    I don't know what I was expecting when I clicked on this but I wasn't expecting a beautiful woman talking about her anal surgery in such a positive and life affirming way. You are so strong to have gone through this and still have a positive attitude towards life.

  • @sarahsteiner3820
    @sarahsteiner3820 Рік тому +16

    I also have Crohn's Disease & have had a colostomy before. But at this point in time, I'm more than likely heading towards having this surgery you're talking about...coming across your channel has literally been a God-send 🙏🏽🙏🏽 thank you so much for your transparency & bravery with sharing this video! 💜

  • @KennethMills
    @KennethMills Рік тому +10

    Your personality is as fascinating as your story. I admire your openness. I know someone who had rectal cancer and has to live with a stoma. Support from people with similar health issues was very important for him as well. I’m so grateful not to have life altering health issues but if I ever do, I will remember people like you. ❤

  • @chrislangley4670
    @chrislangley4670 Рік тому +91

    As the partner of someone who is almost a year post surgery, this is a very interesting video to see! The experiences are very similar, and the end result has changed our lives so much for the better. We talk very openly about all our medical stuff together - we're both nurses - but hearing the journey from another perspective is fantastic. Thank you so much, and all the best!

  • @marikotrue3488
    @marikotrue3488 Рік тому +111

    I have had various hospital experiences (not for this type of surgery) and I cannot tell you how helpful, comforting and informative it would have been to have someone as personable and as knowledgeable explain to me what will be going on during the procedure and how I will feel in 24 hours and in 24 months. Surgery is rightfully scary, but knowledge can make us all handle somewhat better than being fearful AND uninformed. Thank you!❤

  • @robinannaniaz9670
    @robinannaniaz9670 Рік тому +80

    I don't think I could speak with this much class and grace about stabbing my toe.
    This lady is inspiring 🥺🙏💪❤️❤️

  • @rserra60
    @rserra60 9 місяців тому +2

    I'm old. I have never had a condition of any level of difficulty. I am absolutely inspired by your videos. Compassionate, frank, intelligent and necessary to hear. So thank you, for your site and the help that you give to anyone who deals with Crohns. The rest of us could learn lessons like yours in our own lives, and I hope I continue to do so.

  • @multibusa
    @multibusa Рік тому +12

    Lady you are an inspiration, not to just those people that also have Crohn’s but also to anyone who has health issues that they are very uncomfortable talking about. You definitely have a skill communicating difficult subjects. I truly wish you well with the rest of your life.

  • @laurenstevens0915
    @laurenstevens0915 Рік тому +209

    I had this surgery (mine was actually called APR) in September 2022. I had stage 3B rectal cancer though. Just had my follow-up with my surgeon last week. The hole has finally healed! That being said, I'm still completely numb there. Oh, BTW, I'm 50 and my stoma's name is Vesuvius.

    • @dana102083
      @dana102083 Рік тому +26

      Hope you're doing well. I'm a nurse and vesuvius cracks me up!! Xo

    • @amandacrawford4748
      @amandacrawford4748 Рік тому

      @@dana102083 what is that or what does it stand for ? ( that name)

    • @dana102083
      @dana102083 Рік тому

      @@amandacrawford4748 maybe you figured it out but Take a google if you need to..it was quite explosive!

    • @luvfunstuff2
      @luvfunstuff2 Рік тому +17

      Holy crap! Vesuvius is hilarious! 🤣

    • @Crafty.Goth.Creations
      @Crafty.Goth.Creations Рік тому +11

      Vesuvius! I didn't realize people named their stomas.

  • @sharonzona4346
    @sharonzona4346 Рік тому +241

    When I had my surgery (23 years ago now) my mom took me to one of my doctor's appointments. I didn't realize it, and neither did she, but it was the day I got my stitches out. As the doctor was doing it he stepped aside and said to my mom, "Look at this! This looks fantastic!" Both mom and I were mortified, but he was very proud of my surgery results. LOL!!

    • @lorihoop3831
      @lorihoop3831 Рік тому +33

      My surgeon said that about the double mastectomy scars once the bandages came off. We were even laughing about it because despite the horror of the situation, she did do a FABULOUS job. 7 years later and they're barely visible.
      LOVE when people share their stories, they give so much encouragement to others. ❤🙏

    • @harryhotspur4142
      @harryhotspur4142 Рік тому

      YOU HAVE TO REALIZE THAT PEOPLE WHO SEW BUNGHOLES UP TEND TO HAVE A DIFFERENT PERSPECTIVE IN LIFE....WAIT UNTIL YOU HAVE PEYRONIE'S SURGERY TWICE IN 1982 AND THEN AGAIN IN 1990....OK BEFORE YOU ASK....
      MY WIFE COMPLAINED SO 9 MONTHS AFTER MARRIAGE ...."21 CM ( OR 8.? INCHES)IS KINDA LONG" SAYETH THE SURGEON TO MY WIFE....SHE ALREADY KNEW..., DIDN'T LINE UP LOOK RIGHT SO AGAIN IN FEBRUARY 1983....*BUT....THE NOTCH CUT OUT HALFWAY UP ON THE RIGHT SIDE ( CURVED DOWN AND TO THE LEFT ...POINTING AT 7 OR 7:30...VERY VERY STIFF, UNBENDING (NO PUN)....FED 1990 ...I HAD IT "CORRECTED" AND THE ("HARD KNOT-AGAIN NO PUN)WAS REPLACED BY CUTTING IT OUT AND TISSUE WAS REMOVED FROM THE RIGHT FEMORAL CREASE....IT REPLACED THE HARD WEDGE SHAPED KELOID TISSUE THAT HAD BEEN THERE 9.5 YEARS...
      THIS WAS DONE BY A VERY KINDLY 60-ISH PLASTIC SURGEON..I HAVE A SCAR IN THE THIGH CREASE WHICH IS ABOUT GONE AND THAT TISSUE HAS LONG SINCE REVASCULARIZED TO NORMAL, FEELING.... NORMAL BEING ABOUT 96%....THE SIDE TO SIDE IS CORRECTED *BUT*....*BUT*!!..... THE DOWNWARD CURVE COULD NOT BE SO EASILY ADDRESSED.....THAT BIG OL' NERVE AND MAIN PENIS ARTERY ARE RIGHT IN THE WAY OF THE DORSAL ASPECT OR UPPER SERVICE OF THE PENIS AND CANNOT BE RISKED LEST CALAMITY ENSUE I WOULD BECOME PLAIN OLD WILLIE ( NOT MY NAME)SO MOST OF MY PROBLEM REMAINED....ADD TO THIS A LONG BOUT WITH "*IBS"*, DIVERTICULOSIS/ITIS, SPASTIC COLON WHICH CAUSED M CRAMPS SO SEVERE IT TORE MY ILIOINGUINAL OPENING....PROBABLY CAUSED BY SOME TOXIC FOOD ADDITIVE, LIKE HFCS, GMO . ASPARTAME ET AL......MY ENTIRE FAMILY AGED 25-60+ DEVELOPED "DIVERTICULOSIS/ITIS BUT ONLY I HAD THE TEARAGE,,, I HAD CHRONIC PAIN/BURNING RAWNESS DIARRHEA SIGMOID COLON, "CRUSHED ANTERIOR SUPERIOR ILIAC SPINE, IMPINGED "WHOLE BUNCH'S NERVES AND HAD 1 HERNIA AND 3 SCAR TISSUE SURGERIES..SDALY BUT IMPORTANTLY THE LORTABS/PERCOCETS I TOOK FOR THE "BEING CRUSHED TYPE PAIN" NERVES QUIETED THE COLON....FINALLY IN 2002 I AD THE LAST OF "4 HERNIA-TYPE" SCAR REDUCTION PROCEDURE....MY DAD HAD SEVERAL INCHES REMOVED FROM HIS COLON ( A DISTENDED LESION SWOLLEN TERRIBLY WHICH HELPED HIS DIVERTICULITIS...I *KNOW* DOCS OFTEN USE THE SHOTGUN APPROACH AND DON'T HAVE A CLUE BUT JUST THROW THE PDR AT YOU WHICH ACCOMPLISHES NADA...NOW AGE ND ED HAVE NEGATED MY SURGERY FOR PEYRONIES.....I STILL HAVE A 8+ INCH CURVED PENIS WHICH I CALL THE ANSWERING SERVICE CAUSE I HAVE NOT TAPPED THE CERVIX WHEN HAVING SEX.....NOBODY COMPLAINED BUT MY 1ST WIFE WHO WENT BIPOLAR AFTER 25 YRS.....LIED, FABRICATED NBS CHARGES...MY ATTORNEY DIDN'T DO DODO......ET HER STEAL 293,000 DOLLARS FROM ME....NA NA NA NA NA THOUGH....SHE DIED 5 YRS AGO IN OCTOBER PAST.....HAVING TO HAVE SURGERIES TAXES YOU BADLY ESPECIALLY NO ELECTIVE BUT AN 8 INCH PENIS RAMMING INTO THE CERVIX ONLY SOME 5 INCHES DEEP HELPS CREATE SOME OF THE WORST DISCOMFORT TO WOMEN.....THE KILLING THING IS.....MOST LIKED IT AND ONLY SHE, AT 6'1'' AND 150 POUNDS WHEN WE GOT MARRIED DEC 1981 WAS THE LARGEST OF ALL WOMEN I EVER USED IT ON....HOPE THIS HELPS SOMEONE...CIAO GIRLS

    • @johndarre6005
      @johndarre6005 Рік тому +8

      You truthfulness and openness is so inspiring. I had cancer five years ago and just recently was told I am cancer free. Mine cost me my voice due to Agent Orange. It was a different type of cancer but just the same your are a inspiration to for everyone.

    • @sharonzona4346
      @sharonzona4346 Рік тому +4

      @@johndarre6005 That's so sweet of you to say! Thank you!!

  • @cuquitina30
    @cuquitina30 Рік тому +74

    My respect to this lady for sharing her experience so natural and openly and for all people suffering from it.
    I personally don’t have any experience with this, but learning is important to try and understand what others are going through.

  • @jen5714
    @jen5714 Рік тому +4

    Your comments about your surgery are so straight forward and refreshing to hear. You don’t beat around the bush talking about it. Thank you for that.

  • @GiovanaSimmer
    @GiovanaSimmer Рік тому +8

    14:40 I was one of those people until less than 15 minutes ago.
    My uncle recently had to have his colon removed (due to cancer, though), and even then I never considered the possibility of having one's anus removed.
    I absolutely admire your attitude, your openness and your positivity, I'm sure you are solace to many people who are worrying sick about having to do a surgery like that, and you give them hope.

  • @williamrmitchell1960
    @williamrmitchell1960 Рік тому +89

    This does need to be talked about. Crohns, IBD, fistulas, bowel cancer are things that are best understood so those individuals so afflicted can get treatment, and not be victims of self doubt or guilt. Good video. Be brave dear lady!

    • @kiaharper7172
      @kiaharper7172 Рік тому +4

      Agreed! I have patients that try to conceal their ostomies in the hospital, especially if they are there for other reasons. I always make sure I have a look and a conversation about it so it's not the elephant in the room.

    • @AKUSUXs
      @AKUSUXs Рік тому

      This is the most painful situations I've ever experienced! I've had numerous joint surgeries/replacements, both knees, right shoulder, all cervical vertebrae fused, and L5-S1 fusion. I would take the recovery of all of these surgeries over an attack!

  • @BlueCollarRedneckLife
    @BlueCollarRedneckLife Рік тому +83

    Not a patient but I do love learning about medical things. I love learning about anything and I never knew anything about Crohn’s disease until I found your UA-cam years ago. Since then I ended up with a friend who has Crohn’s disease and he is so happy to have a friend who knows a little bit about it. He is comfortable talking about it and never embarrassed around me and I think it helps make his life easier. I have even told him about your channel and he watches you now too

    • @miss_whipps
      @miss_whipps Рік тому +4

      Same here, not a patient but a lifelong dork for medical knowledge! Like you, I find it helps me be a more informed, compassionate friend to the people in my life who may be navigating a medical condition.
      This lovely woman is a goddess, so much grace and humor. She's using her experiences to help others in a uniquely useful way and I admire her so much. 😍

    • @vaderladyl
      @vaderladyl Рік тому +3

      To me is amazing how they perform all of these difficult surgeries. How much the medical science has progressed in the surgery dept. is a very interesting theme for me.

    • @vaderladyl
      @vaderladyl Рік тому +1

      @@adamdavis5383 That is true. They do amazing things now but that is only the tip of the iceberg, unfortunately.

  • @cab102361
    @cab102361 Рік тому +32

    You are extremely brave to share this with us. My sweet dear niece has Crohn’s disease for years, we often thought it might be fatal for her. She finally had quite a bit of her intestines removed and has followed a strict diet since. I’m probably not explaining everything properly but it was so frightening for quite some time. She is very much healthier now. Bless you for being so generous with this information.

  • @debbiegrima4047
    @debbiegrima4047 Рік тому +10

    I’m a rectal cancer survivor (stage 4) diagnosed in 2018 at the age of 45, tumor 5cm x 4cm x 3.5cm, at my back door, no symptoms. The oncologist told me had i not been in tune with my body I would not be alive today. 5 weeks radiation and then surgery. I hated the thought having a colostomy, but now it doesn’t stop me from doing anything. Life is what you make of it…

  • @brageheber6717
    @brageheber6717 Рік тому +11

    As a future nurse, these videos are very educational. Its very nice to have someone share this openly about the period after surgeries like this. Makes it less hard to talk to pasients with similar conditions.

  • @lauracornish7112
    @lauracornish7112 Рік тому +116

    You go girl. I’m retired from medicine and sometimes you just have to tell it like it is.

  • @carlahead5072
    @carlahead5072 Рік тому +87

    Hey there Maggie!! Glad seeing you again!! I’ve been living with Crohn’s since I was 17 years old in 1993 . I underwent my total Colectomy 3 days after my 18th birthday and 3 months after I was diagnosed . I too am living with a permanent ileostomy and over the next year I’d underwent several additional major abdominal surgeries for my Crohn’s. My Crohn’s was pretty severe like yours ,Maggie. Thank you so much for sharing your experiences with your Crohn’s and how you live without your intestines. I nearly bled to death -Crohn’s nearly took my life and my only option was to get a permanent ileostomy. My bottom is sewn up too but it doesn’t bother me and it saved my life. Without that colectomy, I wouldn’t be here now . I am so happy that I am still here and I’d love ❤️ to talk to others who are going through that surgery and are living with IBD . I’d be glad to talk to and perhaps counsel others about IBD & surgery as I’ve been there a lot over the 30 years I’ve had Crohn’s.

    • @charlotterockel-kennedy8913
      @charlotterockel-kennedy8913 Рік тому +8

      Thank you also for sharing your story. Very sad to hear that you was so young but better than dying. Wishing all the best and that you stay healthy now ❤

    • @annbryant4388
      @annbryant4388 Рік тому +3

      START YOUR OWN CHANNEL TO TELL PEOPLE WHAT YOU THINK THEY SHOULD KNOW BEFORE PROCEDURES & SEE WHERE IT GOES FROM THERE! WITH MUCH LOVE FROM VIRGINIA!!!

    • @harryhotspur4142
      @harryhotspur4142 Рік тому +3

      MAY GOD BLESS YOU AND CONTINUE YOUR HEALING PROCESS!!

  • @hab790
    @hab790 Рік тому +68

    My dad had this surgery about 10 years ago. He has had Crohn's for probably 40 years and his gastroenterologist says she's never seen a worse case than his. Scar tissue from many, many surgeries caused kinks in his colon and caused him so much misery. He still deals with the pain of Crohn's and scar tissue from all of those surgeries but having no more colon has really helped him with his comfort level.

  • @beakytwitch7905
    @beakytwitch7905 Рік тому +24

    Speechless. A horrible disease. Praying for you, you brave person.

  • @leonardlloyd1089
    @leonardlloyd1089 9 місяців тому +3

    I had stage 4 colorectal cancer in 2010, I'm still a survivor, but had my rectum and 2ft of my colon removed ending with a colostomy for life. The tumor grew from a polyp in my rectum and was detected in my very first colonoscopy. It saved my life.
    Surprising that they used no outside stitches, they glued my rear back together.
    It took a while to get use to it, but I'm alive and dealing with it.
    You are so brave to share your story and a true inspiration!
    God bless!
    And god bless all the nurses "ANGELS" who helped me when I needed it most!!!

  • @Ittasoi9o0p
    @Ittasoi9o0p Рік тому +36

    Thank you so much for this. I had stage 3 an*l cancer and trying to find anyone talking about pain related problems was so hard. I so appreciate you talking about this x

    • @susanbrown4137
      @susanbrown4137 Рік тому

      Did you have pain sitting before diagnosis. I literally haven't been able to sit for 3 years more than a few minutes due to severe pain. I have Crohn's. My last colonoscopy notes just said inflammation in the rectum. I have had leg paralysis and bladder incontinence. I suffer slot of lower back pain too.

  • @budcollar1341
    @budcollar1341 Рік тому +36

    Almost 10 years since I’ve had your surgery.I admire your willingness to openly discuss the side effects and day to day issues that are the results of this surgery. I’ve found that being open, honest, and above all, having a great sense of humor, helps when communicating with people. As a great example, my oldest granddaughter named my ostomy, “Kevin”. Keep up the great work.

  • @czechmate6916
    @czechmate6916 Рік тому +32

    I’m so sorry you or anyone else has to go through this kind of surgery. At least your since of humor is still in tact. Thank you for being brave enough to share this with us. ❤

  • @davidellis279
    @davidellis279 9 місяців тому +1

    What a brave and sensible lady,all the best for the future your an inspiration to people who have to face this terrible situation.

  • @MaryMartinez-xt5eb
    @MaryMartinez-xt5eb Рік тому +4

    Ten years ago, I had a ostomy for 6 months and it was a relief. I had massive diverticulitis and a fistula from my sigmoid to my bladder. I almost died and was rushed into 12 hours of surgery to remove the sigmoid, repair the fistula and to repair a massive hernia. My body healed up and 6 months later I got the reversal and am doing well but I'm not sure what the future will be. I have a supportive family and my husband was very good to me and at first we thought it might be permanent which would've been fine. Any partner that won't accept you after these surgeries isn't worth the time. It's nothing to be ashamed of and nothing to apologize for. Thank you for your generosity and time creating this video.

  • @rebeccasinkway596
    @rebeccasinkway596 Рік тому +226

    I have ulcerative colitis and am a nurse. This was a wonderful video super open honest and informative. Love it!

    • @yessigabi12
      @yessigabi12 Рік тому +9

      I have seen people healing from that with a very strict carnivorous diet, you can look into it.

    • @Trisha-uh1gb
      @Trisha-uh1gb Рік тому +4

      I was diagnosed with Ulcerative colitis at 27 years old. Then I got sicker in my early 30s and got diagnosed with crohns colitis. I'm a nurse also. I remember when there was paper charting I would take my charts in the bathroom. Sounds gross but I was a charge nurse and couldn't call out anymore.

    • @Trisha-uh1gb
      @Trisha-uh1gb Рік тому +1

      I was diagnosed with Ulcerative colitis at 27 years old. Then I got sicker in my early 30s and got diagnosed with crohns colitis. I'm a nurse also. I remember when there was paper charting I would take my charts in the bathroom. Sounds gross but I was a charge nurse and couldn't call out anymore.

    • @Man0War_Loki
      @Man0War_Loki Рік тому

      Trisha, wait you had UC and THEN developed Chrons?

  • @dawnwilliams8051
    @dawnwilliams8051 Рік тому +46

    I know this is hard to talk about being where your surgery was but this is very educational for anyone that may be faced with the same circumstance.

  • @wendysmith8246
    @wendysmith8246 Рік тому +124

    No one can call you a asshole anymore!! 😁 but for real you are a strong person to go through something like that And am glad you're not in pain anymore you are very Brave to let people know about your personal and private health issues you are helping so many people out there going through the same health issues you went through!! God bless you ❤️✌️❤️✌️❤️

  • @johnmanning5568
    @johnmanning5568 Рік тому +12

    What a woman! I have so much respect and admiration for this beautiful lady. The pain and suffering she has obviously endured yet she has a wide smile as if nothing has ever been wrong with her. Her partner is a fortunate man to have such a tower of strength by his side.

  • @elizabethjuell723
    @elizabethjuell723 Рік тому +3

    I'm suffering from so many issues in my digestive system. I lucked out finding your video today. While I don't know what is going to happen. You have given me hope. Thank you for your honesty and straightforward approach. Many blessings.

  • @natalieshicks7880
    @natalieshicks7880 Рік тому +78

    My sister-in-law had anal cancer. I am curios about it so I am able to know how I might help her and others since I am a CNA who works as a personal caregiver. Thank You for being so open about such a personal issue.

  • @miranduri
    @miranduri Рік тому +22

    It is so brave and compassionate of you to share this. All the people contemplating this surgery will feel better after watching you.

  • @alaska-bornfloridaman
    @alaska-bornfloridaman Рік тому +13

    My 81 year old neighbor just had this surgery. She jokes around about it and seems to be doing well. I hope she continues this positive attitude and to heal.

  • @Javo_Non
    @Javo_Non Рік тому +10

    So much respect to you for your openess to talk this so naturally. You're doing a great thing for so much people.

  • @davidchristensen6908
    @davidchristensen6908 Рік тому +3

    I just clicked on your video. How wonderful you can talk about your surgery. How cool for others can come hear and talk . Best wishes to anyone having to have this kind of surgery.

  • @surfergirl2943
    @surfergirl2943 Рік тому +47

    Maggie I just LOVE you ! I don’t have Crohns but I have a friend who does and I appreciate you SO MUCH. ❤❤ Thank you for being so transparent and brave . You have educated sooo many and you are just awesome for that !

  • @jfalc4
    @jfalc4 Рік тому +12

    Maggie, I'm a nursing student and I've been hearing a lot about stomas and ostomies and whatnot but had limited understanding. I came across your videos of removing and replacing the ostomy bag and that just made me want to learn more about you. I must say, you are such an incredible woman to be so open and comfortable with sharing such personal information. You are so great at educating about these conditions while still being super lighthearted and humorous. Thank you so much for these videos, please continue being the courageous, sweet and awesome person you are!

  • @joannewilloughby7428
    @joannewilloughby7428 Рік тому +83

    I had mine removed 4 years ago, it’s definitely a hard recovery but absolutely worth it.
    It took me around 6 months to heal.
    My husband swears it looks pretty normal lol

    • @William_Porter
      @William_Porter Рік тому

      ​@@adamdavis5383 what are you dense or just rude, you know all these organs are internal right? Not only rude, but you are just wrong. Not having intestines or a anus doesn't look different from the outside. It doesnt have to do with "just being nice because they're family" 🙄😒

    • @mharris5047
      @mharris5047 Рік тому

      @@adamdavis5383 Beauty is in the eyes of the beholder. She has a husband that evidently loves her and appreciates her for who she is. I am just glad that she healed and that she is doing better now.

  • @Erideah
    @Erideah Рік тому +4

    Great to see you've got a sense of humor about it, I know I would deal with it with a lot off ass jokes too. Shame and embarrassment are such unnecessary pains that come with a lot of chronic illnesses, and it takes time to fight (I know from experience, just not the same experience). Getting past all that and only dealing with the pains you have to is such a huge relief, and it really helps to show that to others suffering with similar circumstances

  • @ivnehaas
    @ivnehaas Рік тому +6

    I absolutely LOVE that you chose to be incredibly open about your experience! Man, how much people with similar conditions must appreciate this! Thank you, you make the world a better place ❤

  • @kaylamarie8309
    @kaylamarie8309 Рік тому +26

    My oldest brother Ron died in the hospital of complications of his Crohns disease in 2017. His was one of the most acute serious cases possible I suppose. He was in a nursing home for rehab and had suffered a medical emergency. Long story short, he wound up in intensive care, underwent emergency surgery and really just never recovered from it and passed in ICU. He came out of surgery with a colostomy bag because he no longer had any colon left. He fought this evil thing I know for 20 years or maybe even longer. I watched him suffer terribly with Crohns so I have a good idea what you deal with. You are incredibly brave and so giving to share this kind of information with people! What a wonderful person you are! I wish you all of God's blessing for a full and long life. You deserve it!

    • @ionescho
      @ionescho Рік тому

      god "blessed" her with Chron's disease, pretty shitty god if you ask me. Why? to test her faith? to teach a lesson? what bs..

  • @pita2439
    @pita2439 Рік тому +28

    Thanks you for being such a positive role model for all of us and helping those experiencing this with so much information! I’m a stage 3A Colon Cancer Survivor, 5 years now. Had a total of 23” removed from my anus to my descending colon, first osteomy developed necrosis shortly after my first surgery and had to be redone. It is a huge life changing event! And something that has been difficult to adjust to but with the support of good friends and family specifically my wife, and a change in lifestyle, I can now say I live a pretty normal life. Your videos helped me so much 5 years ago when my Surgeon told me what I was facing to get prepared. Please keep sharing! God Bless you and yours!

  • @michelleallport4028
    @michelleallport4028 Рік тому +44

    I have a rectal stump and the pain, spasms,discharge and a fistula to the vaina. Ugh....so many other complications. My GI says I have more than 9 lives cuz I've actually died and been comatose on life support several times. This disease is no joke. This vid was good explanation of the whole ordeal. Ty.

    • @Enlightenment246
      @Enlightenment246 Рік тому +3

      So sad that anyone should go through all this in their lives, l became an Atheist when my husband got colon cancer, it was just awful. Keep strong and know you not alone, 🙏🤗

    • @terrifiorelli9819
      @terrifiorelli9819 Рік тому +4

      My mom had your same issues. It was so hard on her, but she was a tough cookie. May you stay well and healthy.

    • @Πανδώρα-π8υ
      @Πανδώρα-π8υ Рік тому +3

      OMG , so sorry ! What method was used to treat your Fistula? Currently dealing with a rectovaginal fistula and my surgeon is having me wait for the fistula to heal on its own .

    • @gulbaharkaya1546
      @gulbaharkaya1546 Рік тому

      ​@@Πανδώρα-π8υhello I have rectovaginal fistula as well, and my doctor choose to make colostomy in order for proper healing, for 2 month I stay like this than they will put the bowel inside at the end of this month.. I am curious how is ur did u get healed?

  • @deborahaumiller7391
    @deborahaumiller7391 Рік тому +4

    Dear young lady,
    You are so real and naturally funny! Especially about this!
    God bless you and your family!
    Thank you for your sense of joy and humor😊

  • @lorafox871
    @lorafox871 10 місяців тому +2

    I got diagnosed with Crohn's almost 7 years ago. I've already had to have a part of my colon removed because I had a fistula open between my bladder and my colon. My surgeon told me afterward that they were fusing together. I had a colostomy for about 4 months before I had the reversal surgery. It definitely makes you appreciate things a little more and not take things for granted. I'm glad that you were able to get help and get your life back. IBD's are no fun.

  • @lliselsolis4456
    @lliselsolis4456 Рік тому +24

    Thank you for sharing. I love your demeanor, confidence and positivity. People going through this need others like you to remove stigma and spread hope! ❤

  • @ChellenBobby
    @ChellenBobby Рік тому +14

    Man I wish I would have found your channel last year my Mom had the same as you but she also had cervical cancer when she was 22 she beat it twice but then in 2021 she had her bladder removed because of bladder cancer but it came back spread and she passed October 19th,2022 but you would have made her feel so much better about it all with you being so young and being positive about everything you've been through thank you seriously for sharing your story.. ❤❤❤

  • @catboysephiroth560
    @catboysephiroth560 Рік тому +8

    Im on a random side of youtube again, this shits wild. Modern science is really insane, from making new parts to removing them. Your willingness to talk about this is incredible, thank you for educating!

  • @average_life
    @average_life Рік тому +54

    My 26yo son had 3 separate "temporary" loop Ileostomy/ colostomy to give gastric rest and address pouchitis. He developed osteomyelitis of the spine from a fistula tract that made it to his tailbone! He had done years of infectious disease/ Picc line antibiotics and hyperbaric therapy. It did not help. He was living on TPN and wasting away. March 2022 he had the permanent surgery. He is missing part of the small intestine, all of the Colon, rectum, anus. His hospital stay was over 2 weeks, required an additional emergency surgery- as they feared a section of bowel had died. He was not sutured closed- it was a sponge and dressing that vacuumed it closed- he was full of infection and needed to be able to drain any residual or missed. They were shocked that he was not septic and had walked into the hospital. After, he had wound vac dressings were changed every 3 days for 4 months. He has to have Ileoscopy and MRI's every 6 months for forever- a the spine bone infection can return. This is such an incredibly hard disease and lifestyle. It is reassuring to see you living, married, and thriving! He just finally moved out- his "journey" started back in 2014. I pray that he is able to find a loving, supportive spouse, friends and life that he desperately needs and deserves!
    Here's to the best for you!❤

    • @collettewhosthatgirl1330
      @collettewhosthatgirl1330 Рік тому +4

      ❤❤❤

    • @blazefairchild465
      @blazefairchild465 Рік тому +1

      Bless your son ,mam ,May he have the best life possible. The future has many good things that will change his life for the better.

    • @caroliamurri3872
      @caroliamurri3872 Рік тому +1

      God bless and heal him.. what a warrior!!! ❤️🙏❤️

    • @average_life
      @average_life Рік тому +1

      Thank each of you for your kindness. My son is living a warriors life, he is now happily dating and winning every day. 💙

    • @blazefairchild465
      @blazefairchild465 Рік тому +1

      @@average_life that is wonderful news bless him ! , praying for a fantastic 2024 for your family ,May your son’s health continue to be good.

  • @littlepoolefam3
    @littlepoolefam3 Рік тому +2

    You are an amazing woman! What you are doing by sharing your story is and will continue to change people's lives. Most people would be too embarrassed to share what you have and are continuing to share, so I commend you for doing so. God bless and keep you, young lady!

  • @Tj-TrustJESUS
    @Tj-TrustJESUS Рік тому +8

    You are SUPER BRAVE!! Thank You for being real & educating me. My husband's Daddy died of colon cancer. You just never know what people are going through! Again, THANK YOU!! 🙏

  • @marciadichiara5688
    @marciadichiara5688 Рік тому +94

    I only wish I had all this info to share with my sister over the years. She had crohns. Suffered needlessly. Took her life six months ago. Maggie you are a beautiful soul and teaching so many patients and family members. Wish I had seen this a while ago. Blessings to you and Zak

    • @natashaw401
      @natashaw401 Рік тому +13

      Omg so sorry she took her life

    • @catlady6464
      @catlady6464 Рік тому +7

      Thank you for sharing this. I am sorry about your sister. Hold her in your heart. Your memories with her will keep her close!🌷

    • @louern123
      @louern123 Рік тому +4

      i am so sorry 💔

    • @sunflowerrosem.8651
      @sunflowerrosem.8651 Рік тому +2

      So sorry for your heartbreaking loss.

    • @tltfaas
      @tltfaas Рік тому +2

      I'm so sorry about your sister.

  • @CattyT1
    @CattyT1 Рік тому +19

    Thank you for talking about this. None of us ever have this surgery for fun, always for a good reason. My rectal cancer was too low to leave anything to be reconnected to so it all went, no choice. V sore to heal but it took just 3m to be comfortable sitting and I was driving at 6w. That waffle cushion you recommend is brilliant. Good to know it can be waxed, I was never this hairy pre op! I was thinking of donating bits for hair grafts… I can’t imagine how people got through this without the amazing support and information you can now find on you tube. Thank you❤ On the down side my bladder isn’t back to normal due to slight nerve damage and due to complications with a drain I’ve a new hernia there, so it feels like I’m trying to grow a new bottom… mri scan awaited. But all worth it for a cure😊

  • @Lets_Be_Real_UK
    @Lets_Be_Real_UK Рік тому +4

    I didn’t know a thing about Chron’s disease before. Learnt a bunch and it’s heart warming to see you speak about it openly which I’m sure has inspired others as well. All the very best!

  • @il0stthegam3
    @il0stthegam3 Рік тому +4

    I work a lot with patient histories in cancer research and read a lot about all the different possible operations. I often wonder about the patients experiences and the healing, so watching videos like this helps a lot, thank you! :)

  • @daisyrose2425
    @daisyrose2425 Рік тому +43

    Thank you for sharing your journey. My sister has Crohns disease. I also follow Tiffany Thinks Colon cancer journey. She just had surgery.
    You are such an easy going likeable young lady💕 So glad you are feeling better.

    • @kerrybarnes989
      @kerrybarnes989 Рік тому +10

      hey Tiffanythinksfam We Got This 💙

    • @ninjanana102
      @ninjanana102 Рік тому +7

      Daisy Rose: We Got This! Hi from Toledo, Ohio!

    • @EssenceofGod5657
      @EssenceofGod5657 Рік тому +4

      Yes I follow Tiffany thinks who is currently recovering from this kinda surgery & blessings

    • @lindaallebach4285
      @lindaallebach4285 Рік тому +6

      Poor Tiffany is going through it right now ❤️‍🩹 Prayers for all going through health issues ❤️‍🩹🙏🙏🙏

  • @beverlyboggs6495
    @beverlyboggs6495 Рік тому +7

    I can relate, know what you talking about. I had a large tumor on my rectum, anal 23 years ago, I was 45 years old then. I have colostomy, it's normal to me. Now l'm 69, it did not interfere my life and it is not the end of world. Proud of you speaking up, it is not shameful. Thank you, and may God blessed you.

  • @amyhughes2149
    @amyhughes2149 Рік тому +11

    It's so amazing to have people who are willing to share these parts of their experience with chronic illnesses. There is so much stigma and things that are considered "taboo" that genuinely negatively affects people because they feel too ashamed to seek help or treatment. Thank you for sharing your story and normalizing an experience that many people have gone through. I don't have Crohn's, but for years I had undiagnosed coeliac disease and am currently struggling with a few other autoimmune conditions. I remember coming across one of your videos a few days before I was scheduled to have a gastroscopy/colonoscopy to try to determine the cause of my symptoms, and it alleviated so much of the anxiety and shame that I was feeling as a young teenager regarding the procedure, physical exams and medical questions about "sensitive" topics. It can feel really awkward to talk about these things, but the more we do it, the better!
    EDIT: So as it turns out, I DO have Crohn's disease lol. I was just diagnosed and am starting my treatment journey soon. Once again, thank you for sharing your experience and easing some of my fears about living with this disease.

  • @gracedaniels9046
    @gracedaniels9046 3 місяці тому

    Honey, thank you so much for being such an amazing advocate and support for people going through this. My mother-in-law dealt with these same issues for many years. I was the only one she would allow to help her with her ileostomy. I had zero reference to support her other than compassion. If only we could have had someone like you. It may have made it easier for her to deal with what she felt was embarrassing and even shame. You are a hero. You are brave and you are incredible. Thank you for normalizing something we all deal with one way or another. 😊❤

  • @patricia-smiles
    @patricia-smiles 10 місяців тому +1

    Wow!! What an amazingly strong young woman you are!! You've gone through so much, have the biggest smile, and have so much hope to give to others. May God bless you always. I am sure you are doing a huge service to many who suffer from the same condition. Many hugs and WAY TO GO!!

  • @gracekelly2810
    @gracekelly2810 Рік тому +20

    You are amazing! I am facing being hospitalized next month for endoscopy and colonoscopy for issues (obviously). You have helped me greatly be a bit more relaxed. I am so grateful. Blessings to you!

  • @lorid6544
    @lorid6544 Рік тому +14

    I remember watching your stitches removal videos. It was so painful for you. You look great! Thanks for being honest & transparent.

  • @phoenixburns3943
    @phoenixburns3943 Рік тому +4

    I found this video completely on accident letting UA-cam continue to play in the background. I have to say you are the bravest little woman I think I have ever seen. God bless you for being bold and saying exactly what needs to be said you clearly have strength beyond. First impression is you are a petite and small little being but after listening to this video you are the biggest and strongest human I think I've ever encountered on UA-cam. I'm 46, 6'6" tall, 270 lbs, hard, hard life and upbringing. One tragedy after another and continuing battles with my health and mental health. But undoubtedly, you are 5x bigger and stronger, tougher than a board with rusted nails. Please never forget that. Less than 1/2% of folks could go through what you have and have the courage to talk openly about it, regardless of saving face. And you do this mainly to help others facing the same battle. God bless you, bless you in the tongues of angels and the Belout of open space. You aren't a soldier, you madam are a General

  • @taylorwilliams4179
    @taylorwilliams4179 Рік тому +1

    Saw the title and was morbidly curious. I didnt even know this kind of surgery was possible. Im glad I learned something today. Thank you for sharing your story.

  • @zulemccool8129
    @zulemccool8129 11 місяців тому +1

    Thank you for having the courage to share your experience. Living with a colectomy is a life changing experience. Your videos are helpful and informative for people living with crohns & ulcerative colitis.