THIS IS MY BODY, THIS IS MY LIFE

Podcast host Hannah Witton speaks honestly about her hidden disability

When I play tennis, I’m so in awe of my body. As I swing my racket, I often think about how good it feels to be moving, to feel strong and fit, like I can conquer anything. I feel especially grateful because three and a half years ago, when I was given an ileostomy (or stoma – a procedure where the small intestine is diverted through an opening in the abdomen and intestinal waste is collected in a pouch by my stomach), my body confidence was at an all-time low. Now, I look at myself in the mirror: still feeling the impact of the workout through my body,

I trace my fingers along my scar line – my battle scar

– and feel love for my body and all that it’s been through.

I was only seven years old when I was first diagnosed with ulcerative colitis, a form of inflammatory bowel disease that causes extreme abdominal pain and frequent, loose and bloody trips to the toilet. I remember playing video games on the hospital ward and screaming in my Aladdin nightie as they wheeled me to the operating theatre for my first-ever colonoscopy that led to my diagnosis. After that, I was in and out of hospital every couple of years with flare-ups of my disease up until I was 15, when a new medication sent me into what would be a 10-year remission – 10 years I am very grateful for. But ulcerative colitis is unpredictable and, at 25, it came back full throttle; I was the sickest I’d ever been. So sick, in fact, that it was decided that I would need surgery to remove my large intestine and that I’d have an ileostomy. When the idea of potentially needing surgery was first posed to me by my doctor, I remember being scared because it’s a serious operation and life changing. But, mostly, I felt desperate; I was in so much pain, I felt so sick, I was wasting away, I didn’t feel like myself and all I wanted was for the agony to end. I remember my stoma nurse explaining the surgery and ileostomies to me. In a felt-tip pen, she coloured in a little circle on my stomach to show roughly where it would be, so I could look at it and get a feel for what it would be like. She explained that it would look like a pouch on my stomach, which I’d empty when I went to the toilet. However, it felt so abstract at the time, impossible to contemplate. I didn’t think much about body confidence before the surgery. There wasn’t enough space in my brain.

As soon as I woke up from the surgery, I was a different person – or, maybe, the different person that had taken over my body was gone and I was finally me again. I remember just feeling so relieved, grateful and alive, that the stoma didn’t matter. I loved my new stoma because it had literally saved my life. I could finally hold conversations with my

Hidden disability is seldom spoken about – and yet it can affect body confidence in unexpected ways, says podcast host Hannah Witton

family and my boyfriend (now husband) after weeks of just muffled sounds and them sitting by my bed in fits of worry.

But that wasn’t the end. Ahead of me was the long journey of physical recovery – a massive scar straight down my stomach meant that I couldn’t walk, and I’d lost all my core strength. Turns out you need your core for lots of things. Over the next several months, I struggled with walking, standing up straight, lying down flat, singing high notes and having an orgasm. And still, to this day, although I’d say I am fully recovered, when I sneeze or cough, it hurts.

My boyfriend and I had our one-year anniversary the day before I was finally admitted into hospital. We were still relatively new to each other and I did worry that this wasn’t what he had signed up for. A sick girlfriend? A girlfriend with a stoma? In the early days, I needed reassurance that he still found me attractive and sexy; every so often, even now, I still need that same reassurance. Sex was interesting because, even though we were both feeling sexually frustrated from all the time I spent in hospital, we had to take things slowly because my body was so weak and I was still in a lot of physical pain.

For years, I’d been talking about sex and relationships online through my Youtube channel and podcast, Doing

It, and so I was used to being open about taboo and difficult topics. This meant that sharing my illness and stoma didn’t feel hard for me. Instead, it acted as part of my recovery. It felt cathartic and connected me with so many people with similar experiences. In my hospital bed a few days after surgery, I would watch Youtube videos and read blogs from young women with stomas talking about their lives. Most of the support materials from the hospital had pictures of old people, but online I found people who I could relate to. Their content helped me so much. I knew that I wanted to give back to the chronic illness and disability communities by using my platform to share my story, too.

Those early days were a rollercoaster of emotions. I’d swing from being so grateful I was alive to feeling extreme levels of grief for my life and my body before. One day, I’d be excited because I’d walked to the shop by myself; the next, I’d be tired, exhausted and frustrated that my recovery was taking so long.

In some ways, my life has completely changed. In others, it hasn’t changed at all. Most people wouldn’t know just from looking at me, and folks who do know often have lots of questions, mostly about how it all works. I don’t mind the curiosity; in fact, I love talking about how I can see certain foods such as spinach, sesame seeds, mushrooms and peas in my ‘output’ (that’s the fancy word for it). Some people are fascinated, others are sorry they asked. In terms of my day-to-day life, I’ve become a high-waisted underwear person because it feels more secure and the bag doesn’t get in the way. It also means I’ve switched to high-waisted bikini bottoms or full swimming costumes and, to be honest, I do miss the low-rise ones and getting a full tan. I did try a low-rise bikini on my last holiday, but as the bag filled up throughout the day at the beach, it just got more and more obvious, annoying and heavy. With a fully covered or high-waisted suit, it’s much easier to manage.

My partner says he doesn’t even notice the stoma any more. When it comes to sex, it has to be empty beforehand, and the bag I use has a handy Velcro bit so I can fold it up so it doesn’t get in the way much. I also have this amazing lacy, sexy waistband that has a pouch in it specifically for a stoma bag. It’s really soft and I always feel good when I’m wearing it.

These days, my low points with my body confidence come when I see photos of myself in the ‘before’ times. I remember once standing in my bathroom forgetting what I was doing and just scrolling through old photos of myself in bikinis and underwear, progressively feeling worse and worse about myself. The surgery left me with a bigger belly than I used to have and a strange looking belly button. I find it hard looking at these old photos, because there will always be part of me that wishes none of this had ever happened and that I could have that body back – no scar, no stoma. To pull myself out of the scrolling spirals, first I have to realise that I’m in one and put down my phone, then I remind myself that I’ll never have that body again. I basically drill reality into my brain – I will never not have this scar, I will never have a colon again, this is my life, this is my body. I can’t change any of that.

Having something so sudden and dramatic happen to you is a tough exercise in letting go of the things that we have no control over. There is nothing I could have done to prevent what happened; even if there was, there is no point dwelling on it because I know now that it would only make me miserable.

Most of the time, as I go about my day, I forget I have a stoma unless I’m going to the toilet. I also have to always be aware of where public toilets are and if I can access them. Toilets that are dark because it’s trendy or have very narrow cubicles are really not stoma-friendly, either. I remember once I was on a night out and the toilets were so dark that I couldn’t see what I was doing when emptying my bag, so I had to hold my phone with the torch on in my mouth – thank goodness I didn’t drop it into a toilet bowl! I haven’t been camping or to a festival since having the stoma, and I’m a bit nervous about going. I realise many festivals have accessible toilets, but I am just not sure if

I want to trudge out of my tent every night for four nights at about 4am, in who knows what kind of weather, to find a toilet where I can empty my bag.

With a hidden disability like mine, I do get asked personal questions but, on the whole, it doesn’t worry me. It’s natural to be curious – particularly about something like a stoma that isn’t visible. I don’t find it uncomfortable to answer these questions. In fact, it encourages openness and acceptance.

Accepting my body and being open to talk about it with other people is a really liberating feeling. Now, when I see my scar in the mirror, I smile. It’s a reminder of how far

I have come, of health and of happiness. My body has taught me to be grateful for every day.

‘SHARING MY STORY FELT CATHARTIC’