I have a colostomy, I had mine done when I was 11 after being diagnosed with a savvier case of Crohns Disease. You're so brave, I'm almost 13 and I've only had the courage to tell 3 of my friends. I find school really tough, and being bullied doesn't help. You're so brave, it's incredible what you do❤️ Stay strong, hope we can talk some time x
I have had an ileostomy since 2005 after 15 years with ulcerative colitus. it changed my life for the best, I admire you for talking so openly of your experience, I am shore it will make it so much easier for young people requiring an operation after watching your video. Lindsay Bryant, 63, Dunedin, New Zealand
Bless You! My daughter also has a Colostomy - Crohn's. She also has a very upbeat attitude. She's a beauty and has learned to adapt to the change. No one would ever know that she "wears a bag." She calls herself a "bag lady!" She's also very funny. I enjoyed your video. Keep up the terrific spirit you have!
Thank you so much for posting this video and being so open. My 78 year old mom just received a colonostomy and I need to start helping her accept it. I am going to show her your video today and hopefully it helps her get through this. THANK YOU!!!
First off, I want to thank you for sharing your story! I don't have an IBD, rather my colon isn't working properly anymore and may be becoming paralyzed. I may be facing an ileostomy sometime in the nearish future. Secondly, I love how upbeat and positive you are! I know it's not all rainbows and unicorns dealing with this kind of thing, and that there are down days. Dealing with my own illnesses I know this all too well. I just want to commend you for having such a great attitude! Keep sharing!
i had one... sucky long 7 months, walked all the time and eat fiber based food. and im all healthy, but its very discouraging when you go to school and people hear your stoma make a noise... my scar is very sore, and might have to get mesh, all paid for too cause i gave up my native status in canada so i get my own health care and no other canadian can say anything. but im glad you made this video and made me feel less alone. thanks!
Well done im so proud to all the people who have a had a stoma, I have one myself and I know what a pain they can somtimes be! But on a whole stomas are great they are only a tiny add on to your body and people dont even notice. (Unless you have already told the person looking) my stoma saved my life, and im really pleased I can get better. I hope everyone else is okay and copeing with there stomas fine💖👍
my brother has crohns and will likely need a bag one day and my boyfriend will be having ileostomy surgery after many rounds of chemo and intensive surgery ... your videos are great ... you're so brave! good for you girl you're amazing!
Ha, thanks for your courage.. Alot of new "recipients" will really apreaciate this info.. I was let loose from the hospital and I really needed help..I have a major skin irritation problem, and this was "such" a problem.. You "MUST" have an "EXPERIANCED" stomo nurse show you what to do.. I have had mine for about 2 years, without much problem, It is one thing that you just get use to, not a great handycap at all.. Good luck to all of you, who are dealing with this......God Bless, Bob
gee i was thinking the same and commented on a couple of her other videos and i also think the refreshing and positive output is awesome and she also a very kind sweet soul
Thanks for sharing. Go KU, hope school is well for you. When I first opened this page my concern was body image as I'm sure you will be able to manage the medical and care aspects. Many prayers for your health and recovery.
I just wanted to say that I am a KU student as well living in Lawrence. I have an ileostomy and Crohn's Disease. I am getting my take down in 10 days. Prayers going your way!
Very brave girl hope so god gives you all the happiness and courage that you require as i too had undergone this operation currently i am doing fine with no ostomy bag attached to me
you're an amazing young lady. Your strength and self confidence is inspiring. I got to say this, "YOU GO GIRL!" Sorry, I'm a 52 year old non-cool conservative old fuddy duddy. I hope you are doing even better now a few years later. I got my stoma about two months ago. I want you to know what a gift of encouragement you have been to me!
you are totally the most uplifting,sweetest thing to share your story, as you are going through what you did, i,m possibly heading down that road in the near future. keep doing what your doing, i am sure it is good therapy, and you give off a very positive influence i''m sure.. rock on girl......
Wow those are small scars. I have a big long scar from the height of the diaphragm to just above the pubic bone from my 3 surgeries. And another big one on the left side from when they closed the whole where I had the colostomy stoma. I have an ileostomy since age 15, (colostomy at age 12). Not complaining at all, just amazed of how they do it now so differently from 1991.
I had intususception when I was born and had to have major surgery on my smaller and larger intestines when I was 2 weeks old and I thank my mother for all that she has done because I do not have to wear an ostomy bag but I still have a scar that sort of horizontally splits me in half, but not complaining, so I wish you the best of luck and much love
I got my first surgery done at age 12 and I've met a baby boy with a bag. It was a bit awkward when I had the follow up appointment with the surgeon because everybody in the waiting room were adults or mostly elderly. I was the only non adult there.
@DarkWaterfall It is not always rainbows and unicorns, you are absolutely right. There are extremely hard days, but in the end your quality of life will be much better. Would you be getting reconnective surgery down the road or would it be permanent? If you have any questions in the future please please use me as a resource. It's scary feeling alone, but you are absolutely not. You'll be in my thoughts!
I want to thank you for these videos I just got a bag and I admire you for what you are doing here on You tube for others. I do hv a comment for anyone who is having a hrd time with scars Scars are just tattoos with better stories :)
Was this video shot 6 days after the original laparoscopic surgery? Because you seem to be recovering very nicely. I am having same surgery in 10 days and would be thrilled to find out that your feeling this good only after 6 days.
@Ostomystory I don't think I would be a candidate for for reconnective surgery because my rectum is basically paralyzed. I'm having testing this week to figure out if it's a muscle or nerve issue and how well those muscles work. Last spring I went thru tests for a loop ileo but I got too scared after a horrible colonoscopy experience and never went back. Now my symptoms are worsening and it may be my only option. I'm not even sure if he was going to remove my colon. It's all kind of a blur.
You're lucky you got yours done laparoscopically, I had mine done as an open surgery, but I also had my colon removed several years ago, when I was 13, I'm 30 now. How are you dealing with your ostomy? I think the longer you've had it, the more you get used to it, I got my ileostomy when I was 18, I did try and have it reversed 2 different times, but that didn't work and all the pain and constipation came back, so I had to get the ostomy again. Anyways, if you'd like to talk or if you have ques
I just went on an epic road trip a crossed the USA with chrons disease and I am getting scared it might be my last vacation while still feeling healthy , is their a possability I might progress to the point I might need my intestines removed?
i was jus looking thru videos and stumbled upon your and you r a trooper and you said something about a j poach r they gonna perform j poach surgery on you and have u asked about a bcir was reading about that a couple of days ag.
Ileostomy for 11 years, I never heard of IBD or Ostomy, until my most embarrassing moment, went out to eat all of a sudden I had to go, if you can believe it there was a line to the men's room, it went into the eating area, I started going (bowel and blood), I ran out, got to the hospital and where I spent the next year. POINT Wish I had known about Ostomy support groups then. Group needs new members I am youngest 53, need to reach out to younger (Phoenix AZ ASU) advice to reach out
I am 9 month post-op colostomy operation and i am JUST NOW getting back into the dating scene at the age of 24, have you begun dating and found that it is difficult to find a person that is willing to accept you and the procedure that you had done? or was it fairly easy to find someone willing to accept you for who you are and able to look past the stoma?
HEEY what caused you to have the ileostomy bag? I've heard many stories about relapses from having a jpouch and also a few friends who now have constant pain from complications that just cant be fixed. I'd say if you can handle the bag, stick with it.
If a person wont or can't look past your stoma then they are not the person for you. If someone cares about you then all that they will want is for you to be healthy. There are of course always going to be superficial people in this world but even a person with a healthy colon could have the misfortune of meeting someone like that.
I Had Ulcerative Colitis and also had to have an iliostomy at the age of 26...My large intestine/colon were also removed. I had jpouch surgery 4 months later and I am now 39 and have never had a problem since my takedown. If you have any questions, need tips or any advice, please feel free to contact me and I would be very happy to help. Hugs and good Luck!
Yes, you do. If you do not, it might leak. When you get gas, it fills up the bag and it gets big like a balloon. You might turn over in your sleep and roll on it and wake you up. I get a lot of anxiety about these things happening. I have not slept well in 10 months. I have just been used to sleeping alone, after my husband died, and now this to go through. I am very appreciative to God, that my cancer is gone and I will get my bag off in three weeks. Praise God!
Your lucky to have such little scaring, I had to have a colostomy from the time I was born and off and on till I was 13, I'm 32 now and I have major scaring, looks like I was attract by an animal and I'm very very self conscious about it and I NEVER take my shirt off in public. I wish this was around in the 80s
i am getting my surgery in about 2 weeks or sooner and i was really happy when i found this video about how you dealt with it also how bad was the pain after you got the surgery ?
I realize it’s been 9 years but I’m exactly where you were then and wondering the same thing. How was the pain and recovery directly after your surgery. I’m pretty nervous and am hoping it’s not going to be as bad as I have it made out to be in my mind. Hope to hear from you. Thanks
Thank you for sharing - I’m to have a stoma/colostomy done in the coming weeks and am rather apprehensive. I am paralysed from my chest down and was wondering if you could direct me to any relevant persons videos regarding dealing with the management when paralysed? Any assistance would be much appreciated. Thanks for your openness and you look great so soon after your Op - keep smiling and hope that you are back to a great new life in the near future, Loads of hugs, MarkC Founder of Ability2.org
Hi, i have a loop ileostomy for two months so far, i had a tumor in my pelvis graving also a part of my colon so when the tumor got removed they punctured my colon and i had 2 fistulas in the colon so after surgery i came out with an ileostomy to give time to the colon to heal right, so now i'm stuck with an ileostomy for 8 to 12 months :( . it's been really hard, one because never thought it would happen to me, second Ileostomy's are moist so the bags don't last that long like colostomy's do. and because there is always gasto coming out plus if the the gastric acid touches your skin it will burn it and leave you with raw skin and it hurts so bad.third, it sucks when you have diarrhea because its just water coming out of your ileostomy so the bag will be good for 2 or 4 hours. bags are expensive. and fourth i have a lot of trouble doing my daily basics my ileostomy is just in the side of my bellybutton and i'm fat so my fat belly it hangs down and makes the bag to slip down or starts to leak. So yeah i really hate my ileostomy.. sorry i didn't mean to tell you all my complains . i think you are so brave and pretty andyou have a such a pretty flat stomach. . Lol. and when i first came out of the hospital i searched the internet for some help and your video was the first one i saw and it really help me a lot. Thank you so much for sharing this helpfully videos. i hope God keeps giving you a lot of blessings ❤️.
Hello, I just had surgery I've been home for a week and I have not been able to take a complete shower. Unfortunately no one has actually explained how to go about it. If there are any tips on how to take a shower with my bag, I would greatly appreciate your help or advice. Thanks
Hi Guadalupe I am a lot older than you and also have a stoma due to Chrones. After my surgery one of the male nurses advised me to take my bag off as it would feel more "normal" . I did this and it was great. So much better than keeping bag on as the hot water tends to make the glue on bags much harder to remove. Hope this helps honey. At the end of the day it's your body and you will learn how best to deal with it. Love and light always x
I'm Maulana from Indonesia. I'm 22 y.o and have a Colostomy in the left of my stomach. My english its not too good. So, i hope you can understand this comment. I have a colostomy since i was 10 years old. I have a hysprung disease that i get from birth.
I have one two and It is not hard to put the bag on but you gliding know how to put it on good because it is new but I am 11 years old so ya I had it for a long Long time
I have an autoimmune disease that attacks your large intestine. It got so bad they had to take out my colon. the stoma I talk about is a part of my small intestine on the outside of my body to eliminate stool. How did you lose your hand?
Any tips on eating. I was given a list of foods not to eat and eat but its still confusing I was given a low fiber diet Any hints on where to go for help if this is not the kind of stuff you cover
Ask to talk to a diatician at any hospital. I have talked to a few different ones at a few hospitals. I have tried out experimenting some to see if I could eat the foods they told me to avoid. I found out, I could if I did not eat much of it. So I can eat a small amount of popcorn, one slice of wheat bread, or a small apple with skin. I tried mushrooms and nuts out. If I just eat a little bit, I am okay, and no blockage So my advice would be to try out their advice, and see if these foods are a problem for you. I went for 10 months forgoing these foods. Then I rebelled, and tried them out. The dieticians just warn you that you might have a blockage with these foods. The word is might have a problem. I took a chance and it was okay for me. I am careful not to overdo it on raw fruits and vegetables, but some are fine. At least it is okay for me. Try it out to see how you react to these foods.
i also have a stoma and im 12 i got used to it sraight away and i get out at school, high school and i really dont care who sees it ive got 30cm scare and i have to go backin for another op and if i didnt have this stoma i would be dead by now. heres som advice on how to become more comfertable with it ...just pretend that you dont have one ...that it not there. Hope my advice helped bye
So the official time period the stoma can be swollen is 8 weeks post surgery??? (b/c i am just starting my 7th wk, and 1 nurse told me it should be done shrinking, w/o even looking at it, just from timing, so I was curious) Thank you so much for your fun and informative videos! I so appreciate them at this confusing time!!
one quick question how did you manage to walk straight i am now on my 5th week and i cant really walk straight or sit straight ?second how do u sleep different ways my back hurts from laying on my back all the time
hey I've had my stoma for about 3 years now. it should have been reversed a long time ago. however I don't have insurance. does anyone have any advice. thank you.
Annie Love You go to the bathroom out of it. I just got one. You can get them from having Cronhs, Ulcerative Colitis, or Colon Cancer. I had UC and without this I would have died. I was bleeding a ton from UC and was in a lot of pain from all the attacks that were going on in my Large Intestine. This thing is hard to deal with. To look at yourself each day is HARD! I don't mind seeing it on other people, but I find it horrifying on myself.
was it scary the first time you videotaped yourself showing your ostomy bag and scars? I bet so! I'd be afraid. In fact I don't even think I could do that! I'm TOO shy
Some guys are temporary in this condition how about you miss?me they already removed my anus after finding my canser part was on that area, so mine is kinda permanent
