Coping | IBD | Ostomy
A few weeks ago, ostomies were given bad coverage on an English tv programme, a channel which regularly views IBD and ostomies in a bad light. With this began fellow ostomates posting pictures of themselves proudly showing their bags. Around the same time I read posts from friends and fellow ostomates who were badly stigmatized for having an ostomy. Some comments were enough to make your blood boil! This really upset me, so I began thinking of what could I do! I was always open about my disease and my ostomy, hoping that my openness might give someone hope and may begin to break down the stigma. I had always been inspired by Jess at Uncover Ostomy, the Girls With Guts gang, and the beautiful Alison Atkins.
A friend of mine is a photographer and has been doing work with other diseases and conditions with the hope to raise awareness. We got to talking and he was so moved by my videos, which are on Youtube (especially the video of Alison Atkins), he asked whether I would be willing to do a shoot. I agreed. I wanted to mix it up a bit, so along with the usual bag shots, I thought I would have bit of fun and have some shots with my bag covers. I’m not young and beautiful like the Girls With Guts, Jess Grossman, or Alison. I am also quite camera shy; I don’t take photos well!
It took a lot for me to get the photos taken, and even more to show them publicly. I knew there would be some negativity, and I was prepared, but what happened next I was not prepared for! I posted the album of photos in many groups and pages. The positive responses were amazing! But then 1 group totally shattered me! It was an IBD group. I was told I looked hideous, that my face was enough to scare anyone, let alone my bag, and then the comments came that I was horrific and that my photos were enough to scare anyone out of having surgery. This hurt the most as my whole reason for doing the shoot was to help people not scare them! My covers got attacked quite badly and I tried to defend myself by saying that not all the photos had covers and that was a personal thing that I did – I like to be funky and different.
The number of pictures got questioned as to why someone like me would do a photo shoot. The sad thing is, some of those who were commenting so negatively were fellow ostomates, maybe not comfortable with their own ostomies. I got told it would have been ok if the pictures didn’t show the bag as it would show that it couldn’t be seen. The shoot did contain photo’s like that but the point was to show I was loud and proud!
I stopped commenting on the feed as more and more comments on how disgusting I was came flooding in. Some defended me but were quickly shot down, friends even chimed in, only to be called hideous names, and in the end the album had over 250 comments, but not the sort of comments I had hoped! What did come from that incident is that I was overwhelmed by the support I did have, and the friends that supported me and picked me back up. I received many messages of support and what touched me the most was a message I received from a friend who does not have IBD, who had never heard about ostomies and IBD before I introduced her to them from being so open, especially via facebook. I would like to share that message:
“I have no connection to IBD and only know you as a friend. Seeing your photos of you and Squirt have shown how much courage and bravery you have. Ignore the haters. They are not worth your energy. However, showing others your courage does. Chin up girl, brush it off and keep fighting!”
There is still a lot of stigma and stereotyping around ostomies, which I plan to continue fighting! I know I will hit many more bumps in the road but I know I can keep going due to the awesome support out there. I’m not ashamed of my stoma. I hope I’ve made Alison and all of you guys proud!
So my message is Keep Fighting! If I can stand in front of a camera, I’m sure you can do anything!
I really enjoyed reading this. I have suffered major depression and disability following my surgery. at one point i was unable to walk/sit. Screaming in pain every day I wanted to die. I thought nobody would like me any more having a stoma. I now enjoy seeing empowered confident women who rebuild their lives and cope with the bag. it gives us newly operated women hope that we can be confident about our bodies. And be willing to get through this tough disease fighting.
Amazing and truly refreshing ! Remember you don’t have to be old to end up with a pouch ! And it’s not the end of the world either sometimes it’s the beginning of a better quality of life 🙂
I didn’t even realize there was any stigma. I know a guy who wears a bag. He doesn’t think it’s any big deal. I never did either. Funny what people get in a know about.
I really enjoyed your photo shoot. Not only for standing up for ostomies and showing them off but for the courage you had to get behind the counter and do them. How dare other ostomates make rude comments and poke fun of you, you are a beautiful person ind=side and out. Not every person is a model and that doesn’t make them not have feelings. Like your friend said and I will say to you-THANK YOU and keep fighting the fight, post pics of yourself,screw the haters and just worry about the people that care about you. You deserve a round of applauds for doing what you did!!!!!!!!!!! Forget about the negative and focus on the positive. Who knows why they were so mean, but all we can do is let them do a photo shoot or standup and fight for our cause!!!!!!!!! We will see what they do, nothing just make comments to people taking action! God Bless you Donna!!!!!!!! Mission accomplished!!!!!!!!!!!-Kerriann
I love your photo shoot. I also think that you are so much bigger than all of the negative comments that people could ever say to you. You have done a wonderful thing to have the courage to be photographed when you were not sure that you could do it and to show the photos(which rock!!). You will help far more people by following your gut( pun intnded) and showing off your Bag, your covers, and your beautiful face and spirit! Kudos to you!!!!I am proud of you.
I am sorry that you were bullied – that is exactly what happened. Thank you for sharing yourself.I do not have an ostomy yet, but will. It has helped me to know what I’m in for and I really love the positive attitudes around it – giving it a name, maybe I’ll call mine minnie me. I don’t know. Maybe then I can put a minnie mouse cover on it. You all that have shared your experiences have paved the way for folks like me – those soon to come. Bullies come in all shapes, sizes and ages. So do Heroes. Thank you.
Chin up and all that for sure! What you did was amazing and took lots of guts, no pun intended LOL. You look wonderful, the photos are great.
It took enormous courage to show your ostomy and how well you are living. You chose LIFE! There are silly people out there who are so afraid of a colectomy they choose death. I think you probably saved a life or two with your photo session. You may never know who’s life but seeing you living so courageously is inspiring.
Keep up the good work! susanb
You are courageous, and your photos are uplifting and inspiring! My immediate reaction was “Thank you for being so brave and amazing!!” I just can’t believe anyone would respond in a negative or hurtful way. You rock and should be proud of those photos.
Thank you guys x
I was appalled when I read that other people in the IBD and ostomy communities had been so cruel. Don’t waste another bit of energy on their negativity. Instead, keep putting your energy into exactly what you are doing: raising ostomy awareness and being an inspiration to us all. You are strong and courageous and I am so proud of you! Keep up the amazing work. -Heidi
I think you’re beautiful;). Hugs! Your Stoma Sister
You have more guts than any of those people have! Maybe not physically but mentally for sure! I have an ostomy and you’re right, its amazing when friends and family are there for you. I am so glad you did the photo shoot…the one thing I haven’t done yet is photo and post my ostomy. I know I’ll get there some day bit for now I’ll smile inside and out whenever a fellow ostomate follows through with it.THANK YOU!
Your courage is admirable. I have Crohn’s and don’t have an ostomy–yet. It’s people like you that show me I can live with this disease without shame. I spent years in hiding, but since my condition has worsened I have had to ‘come out of the closet’. You are a beautiful woman with a bag or without and an inspiration to me.
CAPS FOR VISION.I DON’T HAVE AN OSTOMY, YET. BUT IT IS PEOPLE LIKE YOU THAT MAKE ME REALIZE IT IS NOT THE END OF LIFE. I HAVE A FEEDING TUBE AND NO MATTER HOW MUCH TAPE I USE IT SEEMS TO WANT TO SEE THE WORLD. I HAVE GOTTEN A FEW STRANGE LOOKS, BUT IT’S THE KIDS WHO ASK QUESTIONS. I ALWAYS DO MY BEST TO EXPLAIN IN A POSITIVE WAY THAT IT IS MY LIFELINE. I THINK THE MORE OF US THAT ARE OPEN WILL MAKE PEOPLE NOT SEE IT AS THE END OF LIFE, BUT A NEW BEGINNING.
Hope you do one soon. You sare very beautiful!
I stumbled across your post by accident, but I had to comment. The people who made those mean comments are trolls. They probably don’t even have IBD, let alone an ostomy. They are just sad, pathetic people who don’t have anything better to do with their lives. They get pleasure out of being mean. That’s enough about them. You look fine, you’re not hideous, there is nothing wrong with showing the bag. From a fellow ostomate, thanks for what you are doing. I had my ostomy 9 years ago, and I wish your photo shoot had been on the internet then. It would have made things a lot less scary for me.
Thank you for your pictures. An ostomy bag is the one thing I’ve been most afraid with having Crohn’s Disease and have told family that I wouldn’t be able to keep going if/when I have to get one, but your story and the pictures help me see that it is possible to live with a bag and nothing to be embarrassed about. Thanks for your help!
I was trying to find words of support. I will just say this: YOU choose what you do. YOU are strong for posting. And as Becky (above) says…Thank you for your courage.
Beautiful people are beautiful regardless of what is stuck to our abs! We are not loved because of how we go to the bathroom and besides it beats the alternative…being sick all the time or being dead without our ostomies. Randy, 27 year rectal cancer survivor and ostomate http://www.ostomyman.org.
I have IBD and I wish to have stoma soon
TO ALL OF YOU AMAZING PEOPLE OUT THERE,I CAME ON THESE COMMENTS QUITE BY CHANCE BROWSING THOUGH DIGESTIVE HEALTHTODAY,BASICALLY BECAUSE I WAS BORED AND HAD NOTHING TO DO WHAT WONDERFULL INSPIRING STORIES I HAVE BEEN LIVING WITH LUPUS DIAGNOSED 23 MAY 1976 AGED 32,GIVEN ONE TO THREE YEARS TO LIVE,I TURNED 71 ON 1ST FEBFUARY AND HAVE BEATEN ALL THE ODDS,LUPUS HAS BEEN IN MY GUT FOR THE LAST 7 YRS
AND EATING IS A DAILY CHALLENGE,HOWEVER,I HAVE WRITTEN AN ARTICLE ” LIFE IS FOR LIVING ” MY JOURNEY WITH LUPUS.
I JUST WANT TO GIVE YOU ALL LOTS OF LOVE & LIGHT FROM KIM IN JOHANNESBURG,SOUTH AFRICA AND MAY EVERY DAY BRING YOU THE COURAGE AND STRENGTH TO LIVE LIFE
So sorry to hear that you had to go through ‘their’ shame shit storm. I felt the same way about my own ostomy but kept my shame shit storm to myself not shaming others. I now have accepted my ostomy and also advocate for fellow ostomates or soon to be ostomates to embrace their new self. I now have come to believe that we ostomates are evolved humans,no longer forcing a poop and grunting away, we politely empty a bag and continue our day seconds later. down with the grunters!
Where did you get your I failed English class for not using a colon shirt that’s so awesome I want one!