Sharing stories for World Ostomy Day

03 October 2020

This World Ostomy Day, we've gathered stories from all over our community, from volunteers to fundraisers and from influencers to campaigners.

They each have a unique story to tell so pick a theme to get you started and explore their amazing stories.

Body image | DatingDaily lifeRegaining confidenceMental health and exercise

Alice

Having a stoma has changed my life in so many ways and is something that I feel, alongside having Colitis, has really shaped me as a person. I’ve just celebrated the two-year anniversary of my colectomy and to see how far I’ve come in those two years is astounding.

There will always be prominent mental and physical scars but I feel they add character, experience and a bit of mystery to who I am.

Alice
Living with a stoma since 2018

As a young woman, something I worried a lot about before my surgery was body image and how I would learn to love myself with a stoma bag. After surgery, however, I personally found that no matter what it looked like, I had SO much more respect and admiration for my body. Experiencing my body in the state that it was in with Colitis and then going through major surgery and recovering the way it has was incredible to say the least. I’ve actually become so accustomed to having a bag now, that I find myself forgetting that others do not. Despite having bad days like we all do, I am very comfortable now with how my body looks with my bag, scars, and “imperfections”.

Having a stoma isn’t a novelty or a fun, quirky thing; it can be a last resort or the consequence of a life-saving operation. It’s certainly not for the faint-hearted and anyone who has ever, or continues to, look after one has my full respect. That being said, my stoma has given me my life back. I would much rather go through the trials and tribulations of life with a stoma than be too unwell to function further than my front door.

So far, I’ve travelled to America, Switzerland and Italy with my stoma. I’ve been tattooed, swam in the sea and started dance classes again. I’ve been back onstage singing to hundreds of people, then drunk wine and danced the night away with my friends. I’ve gone on long walks, obstacle courses, been out for lovely meals and to concerts. I’ve made so many wonderful friends and memories that I couldn’t have without my stoma. I feel incredibly lucky and excited for my future, now. My ostomy isn’t who or what I am but merely a part of me, and one that I’m proud of.

@alicetulipuk

Dean

Back in 2000 I had a right hemicolectomy and after a few months recovery went on to live a very normal and healthy life. After 20 years in remission, I worked my way up to my dream job which saw me travelling to China, I was so happy and content, life was good.

On 8th December​ 2019 I went to hospital for a fairly standard procedure, but it did not go to plan. When I woke up, I had no clue what had happened and was shocked to see I had a stoma (Jejunostomy) and a PICC line for nutrition and medication that would be staying for the next 6 months to keep me alive.

So there I was, 37 years old and trying to accept my new life.

Dean
Living with a stoma since 2019

Sadly, I quickly experienced my first rejection because of my health condition. My boyfriend, who I thought would support me through these troubled times, left me due to me having a stoma. He just could not see past the ‘poo bag’ and ended the relationship over the phone. Heartbroken, I reached out to the Crohn’s and Colitis community for support, but I could not find any gay men being open and honest about living with a hidden disability.

That's when I decided to set up my own Instagram account and there were two reasons for this. Firstly, to help raise awareness of my condition to the LGBTQ+ community. But my main reason for speaking out was because I felt there were not many men out there. Unlike the ladies being so open about this condition, there were only two men from the LGBTQ+ Community. I wanted to be an openly single gay man with a stoma talking about how my condition affects my day to day life, my mental health and trying to get back into the world of dating.

I felt pressure to fit into a box within the gay community. My box 'gay man with a stoma and lots of scarring’ came with its own set of problems. I no longer had the body I thought men wanted and how I had sex would need to change to deal with my new way of life. When I updated my dating profiles with photos of me and my bag I got a lot less interest and some very cruel things said to me. Luckily, I have thick skin and I chose to put myself out there, so I knew I was going to get hate from keyboard warriors.

Don’t judge a book by its cover, you might miss out on the best story of your life.

I am still the same guy as before just with battle scars. I think men are basically scared of the unknown. So if I can shed some light and raise awareness on the matter, and help another gay man going through the same thing, such as feeling disowned, ostracised and like we are less of a man due to having a stoma, it will be all worthwhile.

Helena

I live with an ileostomy. Some days are challenging but for the most part life has a new perspective – I live pain free, eat healthier and work out better. I change my bag every other day which takes me two minutes and I empty it six times a day which takes seconds. As I take better care of myself, my anxiety is diminishing. I came to realise there is always light in the dark and I wish to empower, inspire, and advocate for myself and others by acknowledging that I am ENabled, not DISabled. Before surgery, the hardest part of my condition was always pain. Now, I am left with fatigue which can be hard for somebody like me who likes to keep busy.

My stoma, Rose, saved me and so I feel obligated to take care of it and my body more than ever.

Helena
Living with a stoma since 2019

Since having Rose, I listen to my body more and know when to take time out. Learning to be grateful for what my body went through and accepting how my stomach in particular looks now has greatly increased my body confidence. My tiny scars tell a tale of survival and I am proud of them. They are battle scars from a war I like to think I fought and won. I can now get on with my life and all my ambitions with far fewer worries and less pain. Honestly, I love life more than ever.

Chynna

The summer that I was a bridesmaid for my auntie’s wedding was my worst month of Colitis symptoms yet; I barely left my house and was cramping so much that I couldn’t keep food down. At the wedding, I was zoned out and feeling like a zombie. I was able to put a smile on for the photos and a brave face for everyone else but I couldn't focus or eat any of the food and I went to sleep on a sofa in a quiet place after the meal.

Shortly after, in hospital with a high flare up and a urine infection, the surgeon came in to see me and got my ileostomy scheduled. It had been on the cards before but at 23 I was considered to be very young.

The first time waking up and having no tight burning sensation in my stomach was awesome and I still wait for that burning feeling whenever I eat something, but it never comes.

Fun fact: my stoma is called Uncle Fester because he is pink, makes funny noises and sometimes explodes!

Chynna
Living with a stoma since 2018

On New Year’s Eve I did get my first blockage. That was quite painful, and it was caused by cabbage that had knotted up inside me. I’ve also had one burst bag since and that was because I was in such a solid sleep that it filled up with gas and pulled the adhesive away from my stomach.

But I've been able to get my life back! Just things like walking into town is something I could not do at all in a flare up. I was also able to enjoy my birthday and Christmas for the first time in a long time and started going out and seeing friends. Finally, I didn’t feel that I was always disturbing the flow of conversation by getting up to go to the loo.

Ruth

2017 was the year that my life changed. It was the year I got my colostomy bag and my new life began. My stoma is called Mike and I love him! He enables me to go out whenever I like, leave the house at the drop of a hat, and have no anxiety about needing the toilet. I am pain and medication free, with bags (no pun intended) of confidence.

People feel sorry for me when I tell them I have Crohn's or a bag, but the truth is, I feel it’s made me strong, confident, and grounded; it’s made me who I am.

Ruth
Living with a stoma since 2017

I recently appeared on First Dates, thinking maybe complete strangers could find me a man as I was having no luck myself. With the hope of meeting ‘the one’, I also wanted to raise awareness about this condition. I made a point of saying that being ill changed my personality and I was a bit of a wreck to be honest, but then this surgery just saved my life. I honestly feel like all my problems were solved once I had my bag. Some are not a lucky as me, some are battling every day and making do, like I used to; to those people who are a bit fed up right now,  know that you are strong and it will get better. We are all in this together.

Joel

After my surgery and finally getting out of the hospital. My life felt like a disaster. My body looked completely different, I lost my two jobs and an interview for promotion I had that same week was gone. I was in a deep depression. My anxiety was high, confidence was low and I felt that I had to restart my entire life.

What I realized is that my ostomy, and this chronic disease, are not going anywhere. So if I want to be able to live my life to the fullest I’m going to have to make some changes and adopt a new lifestyle. One of the main things that helped me was getting back into exercising. I would get up every morning and take a walk around the neighbourhood. That walk made me feel like a new person. I felt that I accomplished something and it made me continue to set small goals to reach. I started walking further with light weight training at home. As I got stronger, I built up enough strength and confidence that I felt comfortable to start working out at a gym. 

Exercising for me is so much more than just lifting weights - it changed my life!

Joel
Living with a stoma since 2016

Doing more full body movements and using heavier weights, I noticed that my bag would leak a lot more often so my next step was looking for the best ostomy supplies to stop leaking and to prevent a hernia while lifting. When I found the right supplies for me my confidence went up another level.

I started doing more things that made me happy like going to the movies, out to eat or hanging with friends without the fear of having any leaks. I had a more positive outlook on life, and the goals and successes I achieved in the gym transferred outside of the gym as well, such as an invitation to a four-month training academy to be a state corrections officer. I’d taken the test for the position a year before so it came at the perfect time and felt like fate.

The academy was tough and strenuous but I felt prepared from the past 9 months of rebuilding myself. While everyone went to bed at 9:15pm, I would be up washing and changing my bag.

I would look in the mirror before I went to sleep and say to myself "I am strong. I will not let this disease stop me from living my life. I will keep fighting.".

That one affirmation would give me confidence and strength on the days I felt like giving up and just going home. I got up every day, gave it my all and four months later I was on stage graduating the academy!

Fitness is still a big part of my life, so much so that I just recently got certified to be a personal trainer so I can help others.

@crohnically.fit

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