Hi, I am Anna and this is my story.

After birth I was a happy healthy baby discovering the world around me with my full set of intestines. Like most brand new parents, my mum was transferred to the postnatal ward with me whilst my dad went home to sleep after a very long labour. A little later in the day during the routine midwife checks it was noted I hadn’t fed, my colour had changed from pink to grey, my tummy was not soft and squishy, it had distended, and I was visibly irritable. I was in pain and all my symptoms were leading to one thing.  

I was moved to the Special Care Baby Unit for X-Rays, tests, antibiotics along with routine observations which continued throughout the night. I made no improvement, so the paediatric doctors advised it was in my best interest to be transferred to the local Childrens Hospital for specialist care.  

The neonatal ambulance swiftly transferred me to Alder Hey Children’s Hospital, by the time I arrived my bowel was gangrenous and had multiple perforations. I was diagnosed with Necrotising Enterocolitis (NEC), a devastating and often fatal disease that causes the gut to become inflamed and necrotic in newborn babies. I required emergency surgery to create an ileostomy which saved my life leaving me with Short Bowel Syndrome as such a significant portion of my bowel had died. A further nine surgeries followed, stoma revisions and central line sites. I also had a gastrostomy (also known as MICKEY button) placed and was fed by Total Parenteral Nutrition (TPN) for five years as my body had difficulty absorbing nutrients.  

Many milestones and celebrations took place whilst I was an inpatient for the first year of my life, including my first Christmas and the millennium. 

Fast forward several years… 

At the age of eight I had a further surgery to form a Santulli stoma. The best way to describe this is a T junction for my bowels meaning half would come out of my stoma and half would go the traditional way. By doing this my bowel had the chance to gain some control before I made to decision to get a full reversal 5 years later. Santulli stomas were first performed in 1961 for neonates who had NEC like myself but now it is quite an uncommon procedure and was experimental in my case. 

As I was coping so well, I decided to have the full reversal at the age of thirteen, in my second year of high school. Being a child and teenager with a stoma was incredibly difficult mentally and this was the main reason I had a reversal. 

I can vividly remember waking up from the general anaesthetic after my surgery and feeling down to where my stoma used to be, I was over the moon.  

The first couple of years were fantastic, I felt unstoppable, I could wear what I wanted and nighttime bag bursts where a thing of the past. As the years went by, the frequency of toilet trips really started to get me down, visiting the bathroom around 20-25 times a day left me with awful abdominal and back pain along with really sore skin. My stomach also started to make louder noises than my stoma did which was actually the worst and most embarrassing side effect, particularly in exam season and quiet school lessons, it caused me so much anxiety that I would just go home from school sick. I isolated myself and really started to lose motivation for the activities I loved.  

I followed my dream to study Midwifery (maybe all the time I spent in hospital inspired me to work for the NHS!). One of the biggest challenges for me was moving away from home to university and moving into student accommodation with shared bathrooms which wasn’t easy and there was always a worry when I needed to get there quickly.   

The Coronavirus pandemic was incredibly tough, with public toilets often being closed and shops having large queues outside I realised how much I depended on the availability of a toilet and days out became near impossible.  

Through my struggles after a reversal, I realised that having a stoma was actually my normal and I wanted nothing more than to have it back. I was fortunate to have the same consultant and team throughout my childhood, they saved my life and cared for me until I was discharged at the age of 18. Very quickly I learned how hard it is to be a rare case in the adult world, I spent three years trying to find a consultant who would take me on as a patient and create a new stoma.  

I felt like I had my life back again and I adapted really quickly. I jumped straight into the new world of stoma supplies, coloured bags, barrier spray, adhesive remover spray and of course the Eakin freeseals, so many of these items were not available when I had my last stoma. 

Being able to go on days out knowing I can empty my bag into a ‘doggie bag’ in the worst-case scenario is just amazing. I have so much more confidence when I go for a run now as I do not get the pains of urgency in my back. I still have the handy skill of being able to find a toilet in the most random location!  

My life is so much better with a stoma, it took me a long time to realise this. Some days are harder than others, I am lucky to have an amazing amount of support and have learned to just laugh during the hard times such as public bag bursts as these things happen and there is always a way to get through it. 

Anna