I first found out about short bowel syndrome (SBS) from the doctor telling me I had it while I lay in hospital. Rewinding back a few years, I had been getting unexplained stomach pains since I was 15. A lot of doctors didn鈥檛 know what was causing them, and my pain was largely dismissed. Things changed in 2019 when I had an episode of really bad pain, and went to the hospital near where I live in Scotland. On being told I had SBS I found it difficult to process. I underwent a number of emergency surgeries, and it felt like almost overnight I had to suddenly deal with a big and long-term health problem. On being told I had SBS I found it difficult to process.
When my doctors first explained artificial nutrition, all I could think was, is that even possible? Understanding how parenteral nutrition works and how it keeps you alive was all part of my 鈥榥ew normal鈥�. My family and I had a lot of questions about how best I could recover, but the answers we got from the healthcare team all felt very unpredictable 鈥� it felt like we were always told 鈥渋t depends鈥�, 鈥渕aybe鈥�, 鈥減otentially鈥�.
It wasn鈥檛 until I鈥檇 been in hospital for over a month that I realised my parenteral nutrition was potentially permanent. I had assumed that it was just for while I was in hospital, not for life. That realisation was another hugely overwhelming moment. My training on how to set up my own parenteral nutrition was comprehensive, and I felt well-versed before I left the hospital on the practical parts. But the bigger picture still terrified me, and I found it incredibly difficult to process.
This all happened at the start of my bachelor鈥檚 degree in criminology at Stirling University. I remember my doctors assumed I would quit school and move back home to Amsterdam. They could see the bigger picture, but I hadn鈥檛 yet realised just how much my life needed to change.
I was thankful to be out of hospital, but I found it disconcerting to be connected to my feed 12 hours a day whilst also being surrounded by busy university students. If anything, I felt even more restricted and like an outsider 鈥� during those 12 hours I was afraid to leave my room, and I couldn鈥檛 go for dinner with people as I couldn鈥檛 eat solid foods for a year and a half.
In a weird way, when Covid-19 hit things became easier for me. I didn鈥檛 have the energy to walk for more than a few minutes at a time, and I was finding it hard to go to class and be social. The transition to more of an online life was a blessing in disguise for me because it meant I was able to continue my studying at home and be connected while I was listening to a lecture. The restrictions also meant that everyone was excused from being social, so I felt less like I was missing out.
Apart from my education, another huge aspect of my life which has permanently changed is my ability to travel. I come from a very international family 鈥� we鈥檙e scattered all over 鈥� and so travelling has always been an important part of my life. As I was taught about parenteral nutrition, I kept thinking how can I continue to see my family that live abroad? One bag of parenteral nutrition is 4L and has to be cooled, and I need one for every night, on top of a pump, and all other equipment.
Understanding how parenteral nutrition works and how it keeps you alive was all part of my 鈥榥ew normal鈥�.
The homecare provider service was really good in the beginning 鈥� they delivered to airports and they recognised that artificial nutrition shouldn鈥檛 dictate my life. However, more recently I鈥檝e had issues with timely deliveries and it can feel like an uphill battle to sort all the logistics necessary just to visit my parents in Amsterdam. I don鈥檛 feel heard by them, nor taken seriously. I think communication is really key, and it would be great if this was better between my doctors, my homecare provider, and me.
I鈥檓 yet to meet another young person who鈥檚 on artificial nutrition, which can be very isolating. This also ties into having to re-explain my situation over and over to various doctors, teachers, employers鈥� which can feel triggering, and I often don鈥檛 feel like I鈥檓 in the right headspace to do so. I鈥檝e definitely seen an impact on my mental health 鈥� both because of the physical struggles but also the isolation.
I feel as though the mental health hasn鈥檛 been given enough focus in my care. On the medical team there鈥檚 a pharmacist, nutritionist, dietitian, surgeon 鈥� but no one is there that鈥檚 dedicated to your mental health. I firmly believe that having a psychologist on-hand would make such a positive difference to any low mood or anxiety felt as a result of the physical trauma.
I鈥檝e always loved food. You don鈥檛 realise until something is taken away how much it鈥檚 in your life 鈥� all special occasions are oriented around food, particularly Christmas. My family were all very supportive and restructured our celebrations to take the focus away from food, as it was too triggering for me. I felt very low and advocated hard to have surgery so that I鈥檇 be able to eat food. I鈥檓 so grateful that I was able to do this, and since then food has become even more of a passion of mine. Having not been able to have it for a long time, I now make a really big effort with my cooking 鈥� I love experimenting with different flavours and techniques. My favourite food is sushi鈥� it鈥檚 hard to make but that鈥檚 what makes it fun!
My medical team have been incredible overall, and I feel very lucky to feel safe with them. They take the time to talk to me, explain things clearly and give me space to talk. However sometimes I don鈥檛 feel like they really hear me. I don鈥檛 think it鈥檚 for them to say my life is good. My health may be stable on paper, but I don鈥檛 think that equates to quality of life. If I could ask healthcare professionals to be aware of one thing it would be to actively listen. I can鈥檛 emphasise enough how important this is 鈥� to feel like I鈥檓 receiving personalised, person -centred care.
Over the past four years, I鈥檝e definitely adapted to artificial nutrition. In the beginning, I saw it as forced upon me. Now I can understand that it鈥檚 keeping me alive, and I鈥檓 grateful for what it鈥檚 allowed me to do. Despite my doctors thinking I would move back home to Amsterdam and the unpredictability my condition continues to bring, I managed to complete my degree and I feel really proud of what I鈥檝e achieved. It definitely still brings its difficulties and restrictions, but I鈥檓 trying to adopt a more positive outlook as best I can.
