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Learning to love myself and be loved – life after ostomy surgery

Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team

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.

Sam cleasby with ostomy bag showing in barn

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. 

Sam and Tim Cleasby in fine clothes at event

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?
Scope
Senior online community officer

Replies

  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    Hey, quite a journey. There's both opposites and parallels to how things feel growing up with uncertain developmental disability, as there was with Notes On Blindness, which we watched on iPlayer day before yesterday. Jack Monroe has been tweeting about her fairly newly acquired disability today or yesterday, seen on Twitter this morning - uses some very similar words. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • [Deleted User][Deleted User] Posts: 689 Listener
    The user and all related content has been deleted.
  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    It is quite a sharp contrast with the acquired disability experience. Although I think many people still do struggle to accept themselves. My daughter did, when you wouldn't have otherwise thought she'd have the capacity at a young age with severe delay and mainly echolaic speech she was still processing being "a baby" no matter how many times ee explained different people have different needs and didn't like disabled toilets, calling them accessible toilets worked but only for a while. My son with AS doesn't mind being odd, but dislikes being as sensitive as he is, and in the early days found incidental discussion, especially class discussion about autism difficult. But partly he defined himself by his giftedness against his sister's delay and care needs and challenging behavior. So I had to describe it carefully; we are who we are diagnosis or not, but the pattern of differences and difficulties go together and the point of the diagnosis is that doctors and teachers and so on like to identify the non-visible pattern as part of helping you, officially, but it doesn't always work out like that. It's just a note formal version of how people get to know each other anyway. And they do identify people certain ways and label anyway.  I was called nearly everything! There's a lot of stigma about. 

    I think with an acquired disability, and a very physical augmentation and function change to deal with, like Sam had, acuteness is the thing. Dealing with change: everybody struggles with that a bit. Bigger changes, as well as sometimes predisposition such as in autism but not just autism, that can make it hard. Change, especially meaningful change with a lot to process, is acute stress. And certainly sympathetic. Don't you think!?

    Self-acceptance, versus internalising stigmas and bullying is something everybody experiences a struggle with in different ways, that's why I was always being told not to disable myself by worrying about my label, I was just different. Didn't have the desired effect, and seemed like it was often more about them. Knowing where to put me without being a bad person. And they do see disability as going outside of safe bounds although it's not like that. I think all that must threaten to affect you when you have acquired a new physical condition. Any condition too, but the fight seems different with brain based conditions, even later onset ones. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    But then, no. Because you still have good and bad days, so the fight against yourself is still important. Negotiations are important. And difficult. 

    My husband and I find sensory issues, physical coordination and practicalities in life and intimate negotiations difficult. There are options, but it's finding them or tolerating them. Everybody finds that difficult, has different reasons for it. I don't wantbto meditate myself into making this the oppression Olympics. "Everybody is different" always sounded like a copout and a cover for papering over the cracks and denying a painful difference and finding solutions, the conversation was being ended there. 

    The story is important. And where it is now. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    I am talking too much, sorry Sam.  I do want to hear from some people about their later impairment and relationships. And want you to! Cmon, people. Join in. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    edited February 2017
    Thanks so much for your comments @kathy_Bramley and @DannyMoore
    Scope
    Senior online community officer
  • izaiza Posts: 435Member Pioneering
    Hi @Sam
    I love the post and the pictures are fabulous. 

  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Thank you @iza :)

    Scope
    Senior online community officer
  • RenikaRenika Posts: 1Member Listener
    Thanks God for ppl like Sam! Everyone has good and bad days but no one is alone. I'm not the only person with a colostomy. We are afraid, ashamed of our differences. But why? I didn't chose my illness... Thanks Sam for sharing your Story!
  • 1BentSpine1BentSpine Posts: 12Member Connected
    t itI have a urostomy bag which I have had since the age of 11.  I have it because I have spina bifida.  One of the characteristics of spina bifida is having a bladder that doesn't work properly.  Even though having the urostomy bag means an improvement in life overall quality of life,  I am still very self conscious about it. I have had it over 40 years.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @1BentSpine even though I do talk about my bag a lot and even show it off in photos, there are still times when I am self conscious about it.  I think in those times I remind myself of the improvements in my life due to it.
    Scope
    Senior online community officer
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