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Disclaimer: This information within this blog focuses on mental health and depression while dealing with chronic illnesses which may be a sensitive topic to certain viewers.
Living with a stoma to me feels like more of a mental battle than a physical battle. My mental health has had quite a rocky ride during all my years with a stoma and without. The connection between the mind and the gut is a vicious circle, the chemicals in the gut affect brain development and bowel disorders can cause an imbalance leading to diagnoses such as anxiety, depression, and can also be linked to autism and schizophrenia.
My earliest memories of having a stoma were my mental struggles, I had low self esteem and no body confidence at all. My mental health made me look like I was a badly behaved child in the comfort of my own home, but I was just really struggling through life and couldn’t make sense of my feelings. I wish my mental health struggles were picked up by someone when I was younger, I did receive some counselling as a child and teenager, but I felt it was more anger management, I don’t remember anyone really understanding why I was behaving the way I was.
I was always told how strong I was for going through so much and how resilient I am. It made me feel like I had to remain strong, and I couldn’t admit to my real feelings. I had a lot of survivors guilt which made me feel like I had to be happy the way I was and I had nothing to complain about. Having a rare condition made this very hard because I could not relate my feelings to anyone else.
My anxiety increased quite significantly during the time I was reversed. My bowels made a lot of noise, so much that I would sometimes leave a classroom in tears from embarrassment. This is where the gut, brain cycle got me the worst, my anxiety would set my tummy off which in turn would make me more anxious.
After my stoma surgery in 2022, I felt isolated again. I was so pleased to have my stoma back but I just felt really down and restricted. The week of my surgery I was supposed to start working as a midwife having just qualified. I couldn’t go to work as I was recovering, so I missed out on the induction period, I felt sad watching everyone else progress with their lives whilst I was at a standstill.
It’s only as an adult I realised how much my mental health had control of me. In March of 2023 I had an awful time with my mental health, everything that had changed in my life started to catch up with me. I started to question everything and couldn’t get my head around why everything happened to me as a baby.
Improving my mental health
I have anxiety and have suffered depression; I also have PTSD from all the medical trauma I have sustained. I felt that each time I engaged with my GP I was just given medication, this helped sometimes but I don’t want to live the rest of my life relying on tablets to feel stable. I started to realise there are things I need to change to help myself through life.
I attended a counsellor through a scheme at my work. She really pulled all of my trauma to the surface and made me realise the feelings I was hiding. Talking to someone who I didn’t know really helped me. I tend not to complain or tell friends or colleagues how I am feeling I usually just try and get on with it but to express all my emotions to someone I did not know helped me feel safe and not judged.
Tiredness is my biggest trigger, naturally with having a high output ileostomy that’s pretty hard to combat. I have recently changed my working hours and this has significantly improved my mental health, I now work regular hours rather than shifts. I get a full night’s sleep very night and work close to home.
I have always had regular mood swings, but this is usually just because I’m ‘hangry’, I’ve learned to keep myself well hydrated and to snack regularly to try and prevent this.
Talking to other people had my condition has really validated my feelings and setting up stoma support groups has allowed me to help others going through similar feelings to myself.
I am still trying to get to grips with my mental health, every day I have a wobble, some days worse than others but my mental health has definitely improved now I have my stoma back. I feel more at peace with life and my stoma.