My name is Lauren, also known as @lauren_talking_shite on instagram. I'm 26 years old and I live in a small town in the north east of England. I am a Trainee Clinical Psychologist which means I’m currently doing my doctorate, so in a couple more years I’ll be Dr Lauren which is soooo exciting after years of hard work to get to this point! I live with my Fiancé, and we are currently wedding planning (which was a crazy idea while doing a doctorate, but we are managing) and we have a beautiful Cavapoo dog that we treat like an actual human being. I like playing video games, going for walks and going out for food and cocktails as often as my bank will allow!
Having a stoma was never a planned thing for me, so that’s probably a good place to start. In September 2021 I had already been on steroids for about 12 weeks for a stubborn Crohn’s disease flare up that would just not go away, which was concerning. I contacted my IBD team who recommended I get admitted to hospital for further treatment and stronger steroids which felt like a good plan as this wasn’t my first admission for Crohn’s disease, so I was well versed in what to expect!
In hospital they tried stronger IV steroids but to no avail, and at this point I had a feeling that something more sinister was going on. A CT scan confirmed the worst; a section of my bowel was so inflamed that the walls had shut down and were closed together, the tissue was no longer viable, and I had around 5kg of waste trapped inside me, which was being pushed through two internal fistulas that had been formed in my small bowel. Essentially, if they didn’t act soon I would die, which didn’t surprise me as I had never looked so poorly in all my life. Unfortunately, covid restrictions were still in place and due to the urgency of the situation, I was told what was going to happen to me alone, with a chaplain by my side to offer support. When I saw her enter the room I knew it was bad news.
I needed a life-saving operation within the next 24 hours to remove part of my intestine and put a stoma in place. I didn’t really know too much about stoma’s at that point but they tried to explain the best they could. I didn’t cry, or get upset, I just felt a bit numb but also too poorly to realise the gravity of what was happening- I think I was in shock! They allowed me to ring my partner to come in and tell him the news face to face. He was amazing. I told my parents over the phone, and I remember everyone being so worried.
The stoma nurses were amazing pre and post op. They gave me a package with leaflets, stoma bags and support systems but I didn’t feel able to look at any of it. I was taken down to surgery about 12 hours later and the next thing I remember is waking up with a drain in my left, needles sticking out of my abdomen and an ileostomy to my right. The needles were to administer local anaesthetic as pain relief, and I also had patient-controlled morphine (or PCA) which allowed me to control my pain relief and administer morphine every 5 minutes. After 10 days of pain relief, physiotherapy, more tests and daily visits from the stoma nurses, I changed my stoma bag for the first time by myself and not long after that I went home to face my new life with my family by my side, scared, but happy to be alive.
I think for me the most challenging aspect was the suddenness, the unknown and the fear. I had no idea how I would be able to take care of myself or learn how to care for and use a stoma. I worried that I wouldn’t be able to go back to work, or that it might affect my relationships. I needed my partner to stand outside the bathroom whenever I changed my stoma bag to give me moral support through the door because I was afraid.
When you have any major surgery, there is a period of time afterwards where you regress to a dependable state, which I’m really not used to! I had to be helped to wash and all my meals needed to be cooked for me. I had to be really careful what I ate, and I needed help in and out of bed. I needed help getting dressed. I felt like a child really and even though it was only for the first month after my surgery it was really hard to get used to.
I think there are quite a few misconceptions about life with a stoma!! But some of the main ones for me were often the shock I would see from other people when they realised that someone my age could have a stoma, as some people thought that only older adults had them.
Another misconception is usually meant with good intentions, but people wishing me hope and well wishes that I would one day “get my life back”. I never understood this one as once I’d recovered from my operation, I felt like I was thriving really. I was working, exercising and it was the healthiest I’d felt in years. Crohn’s disease took my life away more than my stoma ever did. In fact, without my stoma, I wouldn’t be here today! Many people also choose to keep their stoma’s and I think other people find it hard to understand this perspective, or they might say “I could never survive if that was me!”- but they could, and they would, because that’s just what you have to do. Many people with stoma’s find that their quality of life has improved with it, despite all the challenges that also come along with it. I think people find it hard to see that side of it because often, some of the reasons why people end up with stomas (like IBD) aren’t spoken about often enough. Having a stoma can be a relief from the everyday struggle that people living with these conditions have to survive with and go through.
I had my stoma reversal in July 2022 and it was a harder decision than I anticipated and I spent a lot of time going back and forth as to whether it was what I wanted or not. I had lots of conversations with my partner who was so supportive and wanted me to do whatever would make me the happiest. I had lots of pros and cons for both getting a reversal and keeping my stoma.
For me, the decision was made based on two things that outweighed everything else: the way I got my stoma and my age. I felt that because this was put onto me so suddenly and I had no time to adjust, I felt like I struggled to fully accept my stoma into my life. I couldn’t give it a name like a lot of people do and even though I embraced it as much as I possibly could, there was still 10% -20% of me that was rejecting it, and I worried that I would never be able to overcome that. I also thought that because I was only 25 at the time, I could try my life stoma free while also knowing that if I ever needed one in the future, I would absolutely smash it- and hopefully make that choice myself in the future rather than it being an emergency. So I decided to go for it and place my bets, even with the risk of my Crohn’s disease returning aggressively again in the future.
The biggest difference was definitely not pooping into a bag anymore! I know that sounds really obvious, but it’s such a dramatic change, to go from having no control over your bowels to having full control again. It takes a little bit of time for your body to catch up to the change too, and it was a few months before my body was back to ‘business as usual’.
Another notable difference which I’ve never really spoken about before is the identity shift that I had to go through again. I felt like over the time I had my stoma I had absorbed that as part of my identity, I did so much awareness raising, I was so open about it, I was an advocate for myself and others. So to suddenly not have that part of my identity any more was hard. I felt like I had lost my sense of self in the community I had made a conscious effort to make my mark in. I was one in 335 people who had a stoma and that made me different, and it gave me purpose. It took me a while after my reversal to find my sense of self again and figure out where I fit in, considering I was no longer one in 335, but I wasn’t without a stoma either, as I have the round scar to prove it. It was hard.
I might be biassed because I try to spread awareness on social media, but I personally think social media can help bring awareness to stoma life. It’s a slow process but change doesn’t happen overnight and it's often many small changes, one after another, that create a movement. There is a community of people that I’m a part of trying to be a part of that movement. I can say with confidence that these small changes are in motion- it might not be much, but all of my friends and acquaintances now know about stomas and IBD because I have shared my experiences, so do my work colleagues, not to mention everyone on just my Instagram account alone never mind other people’s too! Just thinking about the people I know personally, that’s maybe 100 people who now know about stoma’s that didn’t before. All it takes is for the right person in the mainstream media industry to hear our voice and then we have a platform to share our experiences. Social media isn’t always all smoke and mirrors, there’s value in people’s real life experiences being shared on there.
To educate yourself on life with a stoma, I think there are a lot of good resources out there to look at and it depends on what you are looking for really! If you are after facts and statistics, maybe some standard tips on how to support a loved one or education about what a stoma actually is then I think Colostomy UK is a great place to find all that sort of information. However, if you are wanting to understand on a deeper level what life might be like with a stoma then I think accessing social media and blog posts like this give a really good insight into what it’s like to live with a stoma and also be human at the same time.
Not everyone is open about their experiences, but if someone you know or love is happy to speak about it then I think sitting down and really listening to what they have to say about their stoma is a good way to go about learning too, but only if the person wants to!
If I were to give advice to my younger self: I feel a bit emotional writing this one as I have experienced quite a bit of trauma since my early teenage years, so firstly I’d want to go back and give my younger self a big hug! But advice wise, I’d want to let myself know that when I grow up I turned my struggles into a career of helping others and that I’m confident and successful and loved. I’d want to tell myself that tough times ahead will come, but that I’m strong enough to get through them time and time again and grow from it as a person. I’d tell myself that I can face any hurdle in my life and fight through to the other side and that nothing has beaten me yet!
To a new ostomate I would say: Read as much information as you can so you can be your own advocate. This doesn’t mean shouting your story to the world like me if you don’t want to, but learn enough about your stoma to be able to understand it and know your rights too. Ask for reasonable adjustments at work- you’ll likely need them! Find a community or support group so that you feel connected with people who have shared experiences. Most importantly, give yourself permission to find some days harder than others, allow yourself to have rubbish bag placement days and leaks- this does NOT make you a failure! Always make space to be kind to yourself and speak to yourself with love and compassion.