Accepting my Ileostomy Bag after Living with an Eating Disorder

Living with a bag on my stomach was something I did not believe I could deal with at first. Not just because of how it looked, how it felt, or because I was scared of other peoples reactions, but because I didn’t know what kind of emotional effect it would have on me. I didn’t know if it would pull me back to where I was almost 4 years ago, when I was living with bulimia. I was scared it would bring back those same feelings, that obsessive, compulsive, feeling of loneliness that fell through lack of control.

In 2011 I was admitted to hospital after one of my lungs had collapsed due to vomit being stuck in my chest. Nobody knew I suffered with an eating disorder at this time. Nobody would’ve guessed either; nor taken me seriously. I wasn’t skinny, I wasn’t ill looking. I was a normal size. Just normal. People forget to differentiate between eating disorders such as bulimia and anorexia. Bulimia for me didn’t just revolve around being skinny. Of course that was my aim, but bulimia for me wasn’t just starvation, it was bing eating eating and purging. Eating so much that I’d feel sick, trying to fill the emptiness inside of me. And then getting rid of the food I’d eaten in anyway I could. If I couldn’t control myself around food, I’d need to make sure it didn’t stay in my system. Making sure I was back to feeling empty. Because if I felt empty I couldn’t be fat. I couldn’t be angry at myself for losing control again. That empty feeling gave me back the sense of control I lost every time I binged.

I remember coming out about my fight with bulimia in 2012. I made a video for the blog I was currently writing. I talked about the effects it had had on my body, my family, and my social life. Of course, many people wrote to me and congratulated me on speaking out about it, others wished me well. Lots of people that had known me in person, had seen me in full length and had not taken the time to look deeper, judged me, mocked me, and attacked me for “talking about something I knew nothing about”.

I could not deal with knowing that people were talking about my experience in such a negative way. I deleted the video a few weeks later. I had never felt so alone. Luckily, I had a couple of close friends at the time, that knew what had happened and were there for me. But it didn’t stop me being scared of what others were saying. Feeling people were looking at me when I went out. I felt like I couldn’t talk to anyone. I felt like people would just laugh at me if I tried. I continued to struggle even after the video, after my hospital recovery, because I still felt alone. I was made to feel embarrassed for what I had gone through, and nobody should be made to feel like that. It wasn’t until I met my boyfriend that things began to change for me.

Living with bulimia is one of the loneliest experiences I have had in life. My life revolved around a pattern of binging and purging, weighing myself daily, starving myself, and looking in the mirror and seeing nothing but ugliness. I felt an aching need to change. I needed to be skinny, that way I’d like myself more. I’d feel better. I hid this from my family and my friends for two years. I don’t know how I kept it up. It was ruining me. I’d cry every night, feeling overwhelmed with guilt from the amount of food I’d thrown up just moments before. I was scared I’d never like myself. I was scared it would never stop.

And this is how I first felt with my bag. I was scared of being scared. I was terrified I’d hate myself again. After not purging since the promise I’d made to my boyfriend in 2013, I had been free. I didn’t want to go back to feeling trapped.

The first two weeks with my ileostomy bag were kept secret. I didn’t tell anyone. When people asked why I had been in hospital for so long, I avoided it. I told them I’d just had a little surgery. I was scared of that judgement I experienced those few years ago. But dealing with it on my own was not dealing with it at all. It was ignoring it. It was singling myself out amongst other people my age. Why should I hide my scars? Why should I be ashamed of the bag that saved my life? Why should I be afraid of other peoples judgement?

I decided to speak out and I’m glad I did. It has allowed me to accept what has happened. Writing has become my therapy. It has been an escape. It has also turned into such a positive thing. I’m finally helping others. I’m finally speaking out and I’m finally gaining the confidence I always longed for.

Speaking out this time, I had such a completely different response. I received nothing but positivity. What I don’t understand is…why? Why is it that it takes me having something visible on my body for people to be there? For people to take time to try and understand? For people to sympathize?

I’m proud of my ileostomy bag. I’ve fought to not let myself get dragged back down. I’ve kept my head high, and I’ve realised that I’m lucky to have the body I do. I’ve put my body through so much harm throughout my life, and it’s time I looked after it. It’s time I appreciated it. My scars show my strength, and my bag is something I wear with pride. It saved my life.

It’s funny how we judge people by what we see. Just because I wasn’t stereotypically skinny, I was an attention seeker. Not somebody who had really struggled in a fight against herself. And just because we don’t have wheelchairs, IBD sufferers are glared at for using disabled toilets. We are known as having a “hidden disability”. Why don’t we ever realise that maybe there’s more than what meets the eye?

8 thoughts on “Accepting my Ileostomy Bag after Living with an Eating Disorder

  1. Hannah (mum) says:

    Watching the self doubt you used to endure constantly used to floor me, I just wanted to block it out and pretend you didn’t feel like that. You were, are and always will be a stunning personable girl. I want nothing more than for you to love yourself as much as we love you xxxxx


  2. Elle says:

    You are truly one of the most inspiring people! I suffer with anorexia and you were one of the reasons I began recovery! It’s strange to think that I dont know you yet you had such an impact on me! Your honestly one of the most beautiful & sweetest girls I’ve ever seen! It would baffle me how you could hate yourself and self harm, as you seemed like an amazing human being,I hate how the disorder makes you feel so self conscious and irrational😓 I’m so incredibly happy that you’ve been through so much with your operation and ED and have turned it all into such a positive! It really hit me that I have to change my negative outlook on things in order to be happy,so I can’t thank you enough for making me see that! You should be incredibly proud of yourself! Not only for filling girls with self confidence about their body’s,but educating people and changing the corrupt stigma people have of ileostomy bags! X


  3. Elisabeast says:

    I’m bulemic too. But have been overweight most of my life…til I lost my bowel anyway. Not sure what effect starving had on my winding up this way.


  4. Kerry phillips says:

    I have had an ileostomy.I am starving myself my anorexia resurfaced.I am permanently
    dehydrated,dizzy,I feel disgusting.I won’t socialize anymore
    I have tried speaking to a doctor but nothing

    I’m happy for you stay well. Xx


  5. Rose says:

    Would anybody tslk to me about sn ileostomy. I am gettingone bc of chronic constipation and now kaxative dependent but they arent working. I have anorexia. Im wirried sbout weight changes after ileostomy? Will I gain or lose? I don’t know how to deal with the wait it will look in having to change it . The whole thing grosses me out . I don’t mean that offensively I am just worried about handling it mentally . I am struggling to be well and I don’t have much of a support system . Any help or feedback would be appreciative and what to expect . I don’t know what else to do I can’t go to the bathroom on my own getting worse and worse and it seems like it’s my only option. Tried weaning myself only to get backed up and buckled over in pain . WhR


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