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Ostomy body image | Dear stoma, I love you because…

Sahara with her Ostomy bag showing

Dear stoma, I love you because . . . 

Liking, loving, or even just accepting your stoma is often not easy. It might feel like something you could never possibly do. Depression after ostomy surgery is not uncommon. The circumstances that led to needing a stoma, whether it was an emergency, how unwell you were prior, plus lots of other things I can’t even think of right now will likely all play a part in how you feel about it.

I do get it. I’ve been there myself, with my first stoma in 2007. I hated it, and I hated the me I was with it. It made me feel all sorts of wrong. Disgusting even. I wrote about my initial feelings in the blog, grieving for my pre-stoma body; part of Fittleworth’s “I’m still me” body confidence campaign. In it, I talk about all of my negative thoughts, leaks, not knowing what to wear, being jealous of everyone else, isolation etc. I thought that I could never be happy, or comfortable with myself, whilst I had a stoma. I had that stoma for two years, and I hated it the whole time.

I’m lucky because how I feel about it HAS changed. I talked about how that happened in a previous blog, accepting my new body with an ostomy. For me, the turning point was when I saw other people thriving with a stoma. If they could do it, why couldn’t I? What was I missing? I learned a lot from other people in the online ostomy community. Some of the initial problems I’d had such as leaks and feeling like people could see my stoma bag through my clothes all had pretty simple fixes.

Any time I had questions, whether it was about swimming, itching, sex, I had people with lived experience that I could ask.

For a long period, I was trapped in an endless cycle of work and sleep. My life was on hold and I slipped into depression. Everything felt dark, like a big cloud was blocking out the sun. My ileostomy allowed the light back in. I can attend events, socialise, exercise, travel, and tolerate a lot more foods! I am so grateful for my stoma because it has given me the opportunity to live again, rather than just survive. I can see a future now.

There’s no denying that some things are more difficult with a stoma, and it can require additional considerations at times. Even as someone who is happy with a stoma, I still have bad days. I wrote the blog, I don’t always like my stoma, after a particularly rough one. Not liking your stoma is OK too! There is no “normal” way to feel about it. I consider body confidence and acceptance to be a constant work in progress.

I wanted to bring you some comments from people who love their stoma. I hope that if you’re not there yet, it might give you a little confidence that you can get there one day. I had so many comments, I couldn’t fit them all into the blog!

So, without further ado.

Jennie said:

I love my stoma. It saved my life and made me a better person. I am more empathetic and confident in myself because of my stoma.

Christopher said:

Three months post-surgery with an end colostomy, it’s been great. My stoma has allowed me to go on holiday to Centre Parcs. I could walk about without limping for the first time. I no longer had a constant temperature and flu symptoms, and I regained my dignity not needing incontinence products anymore. If that was not enough, best of all – for the first time in three years, I swam in a pool with my children as a family and could join in.

Children swimming in a pool, black and white photograph

Amy said:

I love my stoma because it gave me back my life and enabled me to find who I am as a person.

Aileen said:

My stoma gave me the freedom to go out and about without having to plot the journey for toilet stops. Had our ups and downs over the years but still the best decision for me and better to have had it done electively rather than an emergency as was able to tighten those old abs a bit beforehand for a bit better healing (long since gone beneath copious padding now though )

Graham said:

It saved my life, and made me more sympathetic to others whatever their problems.

Rachel Said:

I struggled for numerous years with UC, no medication seemed to make things any better and the flares just kept getting worse. I was in so much pain and visiting the bathroom anywhere up to 45 times a day. Before my surgery I barely left the house, couldn’t work and my mental health was declining rapidly. After I met the surgeon and he agreed to operate I had hope! The weight was lifted from me and I was actually excited. My stoma, Suzy, hasn’t all been plain sailing but I can now do many things I couldn’t for a long time like eat what I want, sit through a whole film, and not worry about where every toilet is. I remember the staff in the hospital not quite believing how positive I was and eager to learn how to care for my stoma that first day but for the first time in my adult life I wasn’t in pain! It was liberating.

AJ said:

It saved my life, literally!  so yeah guess that’s as good a reason as any.

Kay said:

I love my stoma. Bertie has given me back my confidence and my life.

I got Bertie because of a random fistula that couldn’t be healed. I mentally struggled with this and the constant leaking of faeces from the wrong place. It was painful, embarrassing, and to be honest, dehumanising.

Although Bertie has caused me some problems I’m much happier with him than the alternative.

Steve said:

It allows me to get on with my life and do the things I like to do. My big passion is Motorbiking with my Daughter.

I’d like to wrap up this blog by inviting you to join the Fittleworth Ostomate Group, if you haven’t already. My hope is that sharing and learning from others in the community can help you, just as much as it’s helped me!

About the advice and opinions of our bloggers

We hope you enjoyed this article from our guest blogger. They are expressing their views or knowledge on a topic because of their experience & background. Some of the opinions expressed may not reflect the views of Fittleworth or your NHS professional.

It goes without saying, but this is not clinical advice. Each person will have an individual set of medical factors to consider. So please do not to make significant changes to your diet, exercise or treatments before consulting with an NHS professional.

Picture of author - Sahara Fleetwood-Beresford

Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.

Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.

She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.