Ulcerative colitis, dubbed an invisible illness, leaves sufferers – while seemingly fine on the outside – experiencing excruciating pain.
It is the most common inflammatory bowel disease (IBD), and 1 in 400 people in the UK suffer from it.
Evening Express assistant editor Samantha Leckie recently underwent
life-changing surgery to remove her large intestine just nine days after she was diagnosed.
She had been plagued by symptoms for months and what she thought at first was a bug turned out to be much more serious and could even have cost her life.
Challenging the stigma around stomas and raising awareness of IBD, and to mark today’s World Ostomy Day, Samantha gives an honest and sometimes brutal account of how the condition affected her.
And she describes the surgery she needed, which saw her have a stoma fitted, and her steps towards recovery.
I’ve always considered myself to be physically healthy, but what does healthy actually look like? A person’s exterior doesn’t reflect what’s going on in their mind, their body… and clothes can hide a lot. That’s the problem with invisible illnesses – you can’t see them, but that doesn’t mean they’re not there or they are any less chronic than one that can be seen by the person walking past on the street.
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💕❤️ Surround yourself with nothing but LOVE and positivity 💕❤️ I truly believe having the right support network around you will help you get through the hardest of times. Don’t leave room for any negativity. Cutting out people sounds harsh, but sometimes you need to lose the dead weight to move forward. Never let anyone bring negativity to your life. It sounds corny, but you have to surround yourself with people who lift you up, not push you down. 💯 With lockdown, my illness, surgery and recovery, I hadn’t seen my bestie since my birthday in June. Today we reunited and tonight I feel so much better for it. And that’s why she’s my bestie; because she lifts my spirits higher. 💓🙌🏻 Talking to my friends, family and boyfriend about my emotions throughout recovery really is like therapy for me. 💪🏻 With a strong support network around me, I feel like I can take on anything Ulcerative Colitis might throw at me in the future. 🤞🏻💪🏻 #lovenothate #positivevibes #positivity #ulcerativecolitis #ibd #irritableboweldisease #nocolonstillrollin #ileostomy #supportnetwork #ittakesguts #autoimmunedisease #crohnsdisease #ulcerativecolitisfighter #boweldisease #ulcerativecolitisawareness
So from the outside, as I sat on video calls to work colleagues and posted pictures on social media, I probably looked like I was happy and healthy earlier this year.
That was the case until I decided to publicly share my story to raise awareness of Ulcerative Colitis and Crohn’s Disease – two life-long and incurable diseases, which are categorised under the umbrella term of Inflammatory Bowel Disease. Crohn’s Disease can cause inflammation in any part of the digestive system from the mouth to the rectum, while Ulcerative Colitis causes chronic inflammation in the large intestine (colon) and rectum only.
Unknown to me at the time, I began suffering from symptoms of Ulcerative Colitis in March, just as the world went into lockdown. After bouts of diarrhoea for a few days, I just thought I had a bit of a bug. But after three weeks I was still having diarrhoea daily and I couldn’t understand why.
I called my doctor who put it down to stress initially. I was otherwise healthy – there was no reason to suspect anything more sinister.
A further three weeks later and my symptoms persisted, and so back to the doctor I went, but this time they agreed to see me in person. It was suspected that I might have IBS or internal piles. I was given treatment for both. Somewhere deep down, I just had a feeling that wasn’t it. I knew my body, I knew something was just not right because on top of the diarrhoea I was also extremely fatigued – even with a long lie thanks to working from home.
I shrugged off my diagnosis and just prayed that my symptoms would improve, but they didn’t. In fact, they worsened. Between March and June, I began bleeding from my rectum with each bowel movement. And the movements became frequent and painful – sometimes I would have diarrhoea up to 10 times a day and each time I would also pass blood.
Incontinence was next to rear its ugly, humiliating head. I went from not needing the toilet to feeling desperate in seconds… and no, I didn’t make the toilet every time. At 29 years old I couldn’t believe what was happening to me. I was having more accidents than my four-year-old son. How could that be? I felt dirty, degraded and quite frankly, depressed. I needed an answer. What was happening to my once healthy body?
Fear of straying too far from my home, or a toilet, soon took over my life. I was drained, bloated, in pain and spent more and more time looking at the walls of my bathroom. I couldn’t understand what my life had become. I wanted to be a mum to my son, I wanted to take him to the park without worry and have enough energy to play games with him. I couldn’t be that mum anymore, she was fast disappearing (down the toilet it seemed).
My family, close friends and editor were the only people who I’d told about my symptoms – even then, I tried not to talk about it because who wants to confess not making it to the toilet at 29? To everyone else, I suppose I looked healthy. From the outside, I was still me.
By late June my doctor had referred me to the Gastroenterology Unit at Aberdeen Royal Infirmary. But I would never get to attend my appointment which was scheduled for the end of July.
The pain in my stomach, the frequency and the urgency had intensified. I was housebound and on July 11 I’d had enough of the wondering and suffering.
As I lay in bed that afternoon I phoned NHS 24 and begged for a doctor at ARI to see me. The last place I wanted to be during a pandemic was a hospital, but I’d reached breaking point. The cramps in my stomach had me confined to my bed that day.
I was fed up of cutting out dairy, gluten and avoiding all kinds of foods to try to improve my bowel. Nothing was curing it. Little did I know, I was fighting a losing battle.
What is Inflammatory Bowel Disease?
Inflammatory bowel disease (IBD) is a term mainly used to describe two conditions: Ulcerative Colitis and Crohn’s Disease.
Ulcerative Colitis and Crohn’s Disease are long-term conditions that involve inflammation of the gut.
Ulcerative Colitis only affects the colon (large intestine). Crohn’s Disease can affect any part of the digestive system, from the mouth to the bottom (anus).
People of any age can get IBD, but it’s usually diagnosed between the age of 15 and 40.
There may be times when the symptoms are severe (a flare-up), followed by long periods when there are few or no symptoms at all (remission).
It’s estimated that one in five people with Ulcerative Colitis has severe symptoms that do not improve with medicine. In these cases, surgery may be necessary to remove an inflamed section of the large bowel (colon).
Around 60 to 75% of people with Crohn’s Disease will need surgery. There is currently no cure and it’s unclear what causes IBD, but it’s thought to be caused by a combination of factors, including genetics or a problem with the immune system.
Symptoms include; pain, cramps or swelling in the abdomen, recurring or bloody diarrhoea, weight loss, urgency and fatigue.
On that Saturday I was admitted to ARI, much to my relief. Someone was finally going to listen to me, I was going to be rid of these symptoms and get on with my life – or so I hoped at the time.
I had heard of Inflammatory Bowel Disease prior to being diagnosed, but I didn’t know much about it, and anyway, I always thought, ‘these things don’t happen to me’.
But that Saturday evening, I was told to brace myself for that very diagnosis after an X-ray showed one half of my large intestine (colon) was blocked by faeces, while the other half showed inflammation. ‘No, it won’t be that’, I told myself.
I underwent a flexible sigmoidoscopy – when a thin tube with a camera is inserted into the rectum – the following day, which would allow my doctor to examine the lower part of my colon.
I was terrified, but as I sat over a bedpan, on top of my hospital bed having painful, urgent diarrhoea and sobbing my heart out because I was humiliated I didn’t make it to a toilet again, I knew the exam was necessary.
Drowsy from the sedation, I came round to the doctor confirming that it appeared I had signs of Ulcerative Colitis. “There’s no cure I’m afraid, but we will start you on treatment. You’ll need to be on medication to control the disease going forward, however, we hope to have you home soon.”
‘A bowel disease? How could that be? I’m only 29, I’m young and I have a son who needs me. I don’t have time to have a disease.’
It all felt so raw and unreal. I cried to my family and boyfriend. I cried for the pain I was in. I cried for my future. I cried for the person I used to be and I cried harder for the person I thought I would be. I didn’t know anything anymore. My body had let me down – how could it do that to me in my twenties?
So many tears, so many questions and so much fear of the unknown. But there was hope, the medication would surely get everything under control and I’d be back to my son in no time… then I’d just have to take everything from there.
Unfortunately, that wasn’t meant to be for me. That wasn’t the path I was meant to go down.
After five days on steroids and Pentasa (an anti-inflammatory drug used to treat Ulcerative Colitis), I was getting weaker and sicker.
I couldn’t eat or sleep. I was starving, but the thought of food made me feel sick and I began to associate eating with diarrhoea, and that with more bleeding.
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Coronavirus meant I was only allowed to see my mum, dad and boyfriend just before the op (and that was generous of the nursing staff because some patients didn’t even get one visitor). After a week in a room by myself and being asked to make a life-changing decision about surgery, I was cracking up. So thankfully the kind nurses allowed some support. But I still couldn’t see the most important person in my life, my son. At only 4, I don’t think I would have wanted him to see me in that much pain pre op anyway. But post op, bloody hell it was painful to even think about him. FaceTimes are not great when it comes to kids so it just wasn’t the same seeing him on a screen. We’d never been apart for more than 48 hours, so 18 days apart was absolute torture. 💔 Being admitted to hospital during a pandemic is something I wouldn’t wish on anyone. Just when you need your family the most but you can’t see them. I get the reason behind visiting restrictions, of course I do. But the highlight of my day post op was my beautiful mum coming to see me for an hour. 💗 Again, some patients didn’t get any visitors so I was lucky enough to be an exception simply because it was clear my mental health was suffering. My strength comes from my love for my boy. It was my love for him and need to get back to him that helped me pull through and stay positive in hospital. The first day after my op I refused to look at my stoma bag. But I was determined when I thought about how much I needed to get home to my little love, and so I decided to grab the challenge by the balls, look at my stoma bag and throw myself into learning how to take care of it. By day three post op I was emptying my bag myself and I managed a fair few bag changes before I went home. Every empty or change felt like a massive achievement. I think I was more proud changing a bag than I was when I got my degree!! 😂 Don’t get me wrong, I more than shed a few tears… I broke down one night feeling overwhelmed. But the next day I picked myself back up – what else can you do? This picture was the night we were reunited. I look so tired but so freaking happy to be back in his bosie. ❤ #ibd #ulcerativecolitis #stoma #ileostomy
I was in a hospital room by myself and the only contact I was allowed with family and friends was over the phone due to Covid restrictions. I wasn’t in a good frame of mind and I couldn’t see a way forward.
My doctor recognised I wasn’t improving and asked me if I would try a biologic drug, Infliximab.
It came with a lot of risks, but I was desperate to feel better and dying to get home so I agreed.
Infliximab works by targeting a protein called TNF-alpha which causes inflammation in the body. It’s known by many IBD sufferers as a miracle drug – or so I was told.
It was given by IV and I lay there hoping and wishing for my own miracle. But a day later, it became clear medication was failing me.
The inflammation in my colon was too much for the drugs to contend with. The cramping pain in my stomach was getting worse still and even Tramadol wasn’t helping me anymore.
A second camera examination in my colon showed the inflammation had worsened and my doctor expressed fear of my large intestine perforating.
Physically I couldn’t eat, could barely walk and I lay in the foetal position – only moving to pass more diarrhoea and blood.
Meanwhile, my mental health was really suffering from being alone throughout my hospital admission. I needed my family.
Thankfully, I was eventually allowed my parents and boyfriend into my single room provided they stayed a safe distance away from me. I was and am so grateful for that because what came next was something I never expected to happen to me, never.
I needed surgery. It was now a matter of life or death – continue to try medicines leaving myself open to the risk of my colon perforating and ultimately dying, or undergo life-changing, ileostomy surgery to remove my toxic colon and form a stoma using the end of my small intestine.
I’m a mother, daughter, granddaughter, sister, auntie and girlfriend. Living was my always going to be my first choice.
So although I had no idea what was ahead of me, and I was struggling to come to terms with the idea of a stoma, I chose life.
Surgery & Ward 206
On Tuesday, July 21, just nine days after being diagnosed with Inflammatory Bowel Disease and only five months after my first initial symptoms began, I underwent life-changing surgery.
The night prior I met my surgeon, Mr Parnaby – a real-life hero in my eyes. I was beyond terrified for my operation the next day, partly because I didn’t fully understand what was going to happen to my already fragile body.
But after a frank conversation with Mr Parnaby – with my parents and boyfriend there for support – I felt somewhat reassured.
His reputation with all of the nursing staff and doctors were outstanding, and when I met him I understood why.
I was told my large intestine, which was inflamed and covered in ulcers, would be removed.
A stoma would then be formed using the end of my small intestine through an incision in my stomach.
Much to my surprise, Mr Parnaby said I could potentially live without my stoma in the future if I underwent J-pouch surgery which would essentially give me an internal stoma bag – that’s putting it really simply. But I could also choose to make my surgery permanent by later removing my rectum and anus.
My memory of that night is blurry, but I do also remember him telling me that he would attempt to perform the surgery via keyhole.
That was like music to my ears – at that moment I couldn’t handle the thought of an even more difficult recovery which would have been the case if open surgery was performed.
Of course, if there were complications that might have still been the outcome, but Mr Parnaby reassured me that he would try his best. I trusted him.
On the day of my surgery, my parents and boyfriend were back in my room to support me before I was taken to theatre at 9am.
Several nurses came to prep me ahead of being wheeled down and their kindness warmed my heart.
As I lay on my bed, I told my mum, dad and boyfriend I loved them all so much through a river of tears. I asked them to phone my son, to make sure he knew how much I loved him too and to tell him mummy was nearly better.
In that moment, I valued my life, my health, more than ever. I was grateful to the compassionate nurse who came down to theatre with me – I don’t think she had to, but she came along to offer me reassurance and as I said goodbye to her at the theatre door, I could see the emotion in her eyes. I could tell that she cared. She was and is everything a good nurse should be.
What does ostomy surgery involve?
Ileostomy – this is when the large bowel is either removed or allowed to heal before being joined back up together. Part of the small bowel – either the end or a looped portion – is pulled through an incision made in the stomach. This forms a stoma.
Colostomy – this involves pulling part of the large intestine (colon) through an incision in the abdomen to create a stoma. Like an ileostomy, it either involves the end or a loop of the colon.
Proctectomy – a stoma is made permanent when this surgery is performed. It involves removing the rectum and the anus. When the anus is removed that area of the body is surgically closed up (commonly known as a Barbie butt).
Laying on the operating table, I looked at the clock before taking a few deep breaths to put me to sleep.
I told myself to be calm, I was going to wake up because my son needed me to. And then, in mere seconds, it was lights out.
I woke up around 4pm – seven hours later in recovery. Although I was in pain, which was soon masked by morphine, I remember almost immediately feeling like my appetite was back.
I was hungry for the first time in over a week. That could only be a good sign, I thought. When I did come round, I remember hearing the voice of one of the surgical team, “Samantha, we managed to perform the operation keyhole”.
A wave of relief swept over my whole body.
I spent 24 hours on the high dependency ward being cared for by more wonderful nurses before I was moved to Ward 206. Groggy, exhausted and sore, I must have been a terrible sight as I was wheeled into my room which was occupied by three other patients.
Before I hid behind the curtains around my bed, I locked eyes with a woman in the corner of the room who said hello.
As first impressions go, I don’t think I gave a good one as I grunted and cried. But as it turns out, that kind woman didn’t judge me and throughout the duration of my stay thereafter, we became each other’s cheerleaders.
I spent seven tough days on ward 206. For the first few days, I couldn’t bring myself to look at my stoma.
I couldn’t even bring myself to acknowledge its existence. As what was left of my bowel began to slowly work again my stoma made all kinds of unfamiliar noises.
It was a foreign object on my body and I did not want to believe it was real. My body ached all over, I could barely walk, move and it hurt just to breathe.
All I could think was ‘why?’. Why did this have to happen to me? What did I do to deserve it? I thought I was a good mum, a good person… why do bad things happen to good people?
Then something overcame me. I’ve always been a determined person. If I want to do something I set my mind to it, I work hard and I make it happen.
That same determination, combined with the overwhelming love for my son and desperation to go home to him, rose up inside me.
I could feel it from my toes to my head, washing over me and filling my heart with a burning desire to rise up to the challenge I faced. It was decided.
I was going to look at my stoma, I was going to let the stoma nurse teach me how to care for it and I was going to be strong again. And that’s exactly what I did with my mum by my side, keen to learn as much as she could to support me.
It will never feel normal to look at your insides on the outside of your body. At first, I couldn’t breathe and felt like I was staring at an alien.
But I mustered up some courage and began to learn how to clean the stoma, apply the stoma bag and empty it too. All thanks to an incredibly kind stoma nurse who made me feel comfortable and at ease.
What is a stoma?
A stoma is an opening in the stomach, created during surgery, that is connected to either the digestive or urinary system.
The stoma allows waste (faeces) to leave the body and is small, red or pink and may be an oval or circular shape.
It has no nerve endings so a person cannot feel or control the waste. A pouch is worn over the stoma to collect the waste.
A stoma is made permanent if both the rectum and anus are also removed. However, if a patient retains their rectum and anus, they may be able to have surgery to form a J-pouch.
A J-pouch involves the anus being left in place and the last section of the small intestine is formed into a J-shaped structure that holds stool. The stoma is reconnected to the J-pouch, leaving the patient bag free and able to pass waste from their rectum again.
Meanwhile, each day on the ward, myself and the other three women cheered each other on and clapped when each of us achieved something new.
Of course, we all shed tears. We cried for each other, and ourselves, but we bonded over our new common ground – our stomas. We were and still are the self-proclaimed stoma sisters.
On Tuesday July 28 I was discharged and deemed fit and well to go home.
Although scared to not be surrounded by caring, supportive and wonderful nurses, I knew I was ready to begin the next chapter of my recovery.
As I saw my son for the first time in 18 days I clutched onto him, held him tight and cried. This was where I was meant to be… home with my boy.
Right now, as I write this, I’m 10 weeks post-op and I’m happy to be in a good place. When I first got home I was overwhelmed with support, gifts, flowers and kindness from my friends and family.
Truly, I’d never felt so loved in my life. The whole experience has made me feel so grateful for so many things; my health, my family, boyfriend, friends, and the nurses and doctors who saved my life. I will forever be indebted to the NHS staff who cared for me.
They made what was an awful experience bearable because of their kindness and compassion.
While I was in hospital I decided to start an Instagram blog to help rationalise my thoughts. I’m a writer, of course, and therefore writing is like therapy for me.
It allows me to organise my mind and process my emotions. But after looking at endless Instagram pages of fellow IBD sufferers, I realised there was a bigger picture and so much work to be done to raise awareness of Inflammatory Bowel Disease, body positivity and invisible illness.
I decided it was important to not only share my story and the facts but also to normalise bodies that differ from what society would call the norm.
There’s a huge stigma around many disabilities and there’s certainly one around stomas.
You very rarely see images of people with stoma bags on the news, in the media, on clothing websites… you just don’t. If clothing brands, as an example, used more images of men and women with scars, stomas, wheelchairs… well these things would be more normalised and I believe, to put it simply, less scary.
You never know what’s around the corner for you. I certainly didn’t expect to lose my large intestine this year.
But by raising awareness I hope that I can not only do my bit to lessen the stigma around stomas and encourage body confidence, but also to help anyone who may also be living with an Inflammatory Bowel Disease.
It might be someone who fears stoma surgery or someone who is struggling to accept their stoma. But if I can help even just one person feel less scared or more accepting of their new stomach accessory, then I feel like exposing myself on this platform is worth it.
I want to speak about the unspoken. Whether that be stomas, poo, farts, bleeding… I want to make talking about these things less embarrassing for people.
Although over the course of these 10 weeks I’ve shed plenty of tears, I had a thought one night and it really struck a chord with me. My stoma is just one small part of my body – I mean literally, it’s tiny and looks kind of like a strawberry.
Why should I let one tiny part of my body define my life? Especially something that has stopped all the pain, urgency and suffering I was going through.
I no longer have to rush to the toilet and trust me when I say I am loving food again. I empty my stoma bag five to six times a day, when I want to. I’ve had a few bag leaks… the first time I cried. But now I just jump in the shower and wash away the mess and my embarrassment too.
My stoma saved my life. I may not love it endlessly, because after all, I would rather have a healthy colon and have avoided all the trauma. But I am grateful for it. I hope raising awareness and being so honest and open can help me make others feel the same.
Surgery has not cured me of Ulcerative Colitis – no surgery will ever cure Inflammatory Bowel Disease.
There is no cure, so I do still suffer from some symptoms such as fatigue and occasional bleeding from my rectum. I also sometimes still feel like I need to pass stools, but of course, there’s nothing to pass other than some blood and mucus. The fact more surgery is in my future – whether
it be to make my stoma permanent or to try a J-pouch – makes me feel anxious. But I know with my support system around me I will get through whatever difficulties I face.
It’s been a rough ride, but my stoma has allowed me to get back to living a full and happy life. It’s let me be a mum again… it’s allowed me to be me again.
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I’m starting this blog because 1. writing is my therapy and 2. I feel like I have to throw myself into some kind of focus, some kind of mission to raise awareness of the condition I’ve been recently diagnosed with. Never did I ever believe that I would have a life-long condition. Talk about a shocker. Since April, Ulcerative Colitis has crept up and smacked me in the face (or bowel, to be precise). I’m definitely facing a lot of down days as I come to terms with my diagnosis. But I am striving to be positive and return to my strong state of mind. I hope by starting this page I can meet others who suffer with the same invisible yet chronic condition… although I wouldn’t wish it on anyone. Right now I feel lost, but hopefully by raising awareness and meeting people in similar situations I’ll find myself again. So to anyone living with Ulcerative Colitis please say hello. I believe talking and sharing is so good for the soul, and in my case, hopefully good for the bowel too. ❤️🤞🏻 #ulcerativecolitis #IBD #inflammatoryboweldisease #newdiagnosis #colitis #colitisawareness #crohnsandcolitisuk