‘Stoma surgery saved my life’: Aberdeen mum tells of battle with invisible illness on World Ostomy Day – Aberdeen Evening Express

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 todays 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.

Ive always considered myself to be physically healthy, but what does healthy actually look like? A persons exterior doesnt reflect whats going on in their mind, their body and clothes can hide a lot. Thats the problem with invisible illnesses you cant see them, but that doesnt mean theyre not there or they are any less chronic than one that can be seen by the person walking past on the street.

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 Crohns Disease two life-long and incurable diseases, which are categorised under the umbrella term of Inflammatory Bowel Disease. Crohns 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 couldnt 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 wasnt 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 didnt. 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 didnt make the toilet every time. At 29 years old I couldnt 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 couldnt 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 couldnt be that mum anymore, she was fast disappearing (down the toilet it seemed).

My family, close friends and editor were the only people who Id 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 Idhad 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 Id 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.

Inflammatory bowel disease (IBD) is a term mainly used to describe two conditions: Ulcerative Colitis and Crohns Disease.

Ulcerative Colitis and Crohns Disease are long-term conditions that involve inflammation of the gut.

Ulcerative Colitis only affects the colon (large intestine). Crohns Disease can affect any part of the digestive system, from the mouth to the bottom (anus).

People of any age can get IBD, but its 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).

Its 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 Crohns Disease will need surgery. There is currently no cure and its unclear what causes IBD, but its 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 didnt know much about it, and anyway, I always thought, these things dont 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 wont 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 didnt 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. Theres no cure Im afraid, but we will start you on treatment. Youll 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? Im only 29, Im young and I have a son who needs me. I dont 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 didnt 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 Id be back to my son in no time then Id just have to take everything from there.

Unfortunately, that wasnt meant to be for me. That wasnt 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 couldnt 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 didnt 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 couldnt see the most important person in my life, my son. At only 4, I dont 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 wasnt the same seeing him on a screen. Wed 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 wouldnt wish on anyone. Just when you need your family the most but you cant 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 didnt 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!! Dont 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

A post shared by Samantha (@guttedforguts_abdn) on Jul 31, 2020 at 1:34pm PDT

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 wasnt in a good frame of mind and I couldnt see a way forward.

My doctor recognised I wasnt 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. Its 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 tocontend with. The cramping pain in my stomach was getting worse still and even Tramadol wasnt 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 couldnt 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.

Im 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.

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 didnt 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 thats 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 couldnt 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 dont 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.

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 dont think I gave a good one as I grunted and cried. But as it turns out, that kind woman didnt judge me and throughout the duration of my stay thereafter, we became each others cheerleaders.

I spent seven tough days on ward 206. For the first few days, I couldnt bring myself to look at my stoma.

I couldnt 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. Ive 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 thats 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 couldnt 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.

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.

Original post:
'Stoma surgery saved my life': Aberdeen mum tells of battle with invisible illness on World Ostomy Day - Aberdeen Evening Express