Learning to love myself and be loved – life after ostomy surgery
I have a condition called Ulcerative Colitis, I have had years of medication and multiple surgeries and in 2013 I had my colon removed and I now live with an ostomy bag.
My ostomy bag has meant quite a few changes in my life, I had to learn how to manage my condition independently and along with the bag itself, I also have joint pain, fatigue and anxiety.
Having my body totally change over a period of years was a difficult thing to adapt to, there are so many negative connotations associated with an ostomy bag. You only need to search the term ‘colostomy bag’ on twitter to see a barrage of jokes and mean comments about being smelly, the assumption that you are an older person and how gross it must be to have a bag of poo attached to your stomach.
'I felt like the real me was fading away'
At first it really knocked my confidence, I wondered how I could still feel like a woman when I looked so different to the images you see in the media. I felt scared and like the real me was fading away.
I have been with my husband for 18 years, we met when I was just 17 and married when I was 22. How would he feel about me now? He married a healthy woman and over the years I became someone he had to care for, someone who looked very different.
I told him he could leave me, I said I didn’t want to be a burden to him. This came from a place of fear and a lack of confidence. But he told me that he loved me for who I was, not what I looked like and that I couldn’t get rid of him that easily!
This led me down a path of self-awareness, I had to learn all over again how to love myself, and how to allow myself to be loved. It was a dark time to be honest, one that was a real struggle. Not only was I dealing with my own health but also this huge dent in my confidence. I decided the only way forward was to be honest and to talk about this unexpected journey I was on and so I started my blog So Bad Ass (https://www.sobadass.me/) to document these changes like a diary. I found it really cathartic and it helped me come to terms with the changes in my life.
Honesty without fear
My husband and I talked a lot about how I was feeling and how he felt, we needed to be able to speak honestly without fear. I needed to let him know that he could tell me about his worries without me being offended. I loved the End the Awkward (http://www.scope.org.uk/end-the-awkward) campaign that Scope did, it really struck a chord about how we aren’t taught to talk about disability. This was a whole new world to us and we had to navigate it together, figuring it out as we went along.
Doctors and nurses could tell me about the medical side of things, but there was nowhere to turn to ask questions that seemed too personal or embarrassing. But I figured that if we were dealing with this, that others probably were too and so I started talking about these parts of my recovery on the blog too, the response was immense and it made me feel so much better to know that I wasn’t alone and also that by sharing my experiences, that I could help others.
Acceptance and adaptation
It wasn’t easy – I had to accept myself before I could expect him to accept me. But we got there and we are now closer than ever before. If I had to find a silver lining, I would say that my impairment taught me a lot about myself and strengthened my relationship with my husband.
I got involved with the A-Z of sex and disability (https://blog.scope.org.uk/2015/10/12/i-is-for-intimacy-endtheawkward/) where I spoke about intimacy and the difficulties in learning how to be intimate again with an ostomy bag. I also did some photo shoots to show myself and the world that my bag was such a small part of me. Before these photos I felt like a tiny person behind this huge bag, it felt like my impairment had taken over who I was, but when I looked at the photos I realised just how small it was. I realised that it wasn’t my whole identity, just an extra part.
Relationships are tough, sometimes things happen that are too big to get through and things don’t work, but if you are both committed to adapting, learning and working on it, you can get through changes and make things even better.
Did your impairment come later in life? How did you feel? Did it change you or your relationship?
Senior online community officer