Disclaimer: This information within this blog discusses mental health, anxiety and suicide which may be a sensitive topic to certain viewers.
I always find this a difficult subject to talk about, not because I am afraid to talk about my mental health and not because I am worried about what emotions it may evoke by talking about my mental health. The difficulty I have is that my mental health got better after having a stoma!
I have spoken to many people that have stomas and their mental health (MH) has suffered since having a stoma. A number of those people had emergency surgery and woke up with a stoma. That is a huge change in life if you are not expecting it. To wake up from surgery with this alien protruding from your abdomen must be a massive shock. So I completely understand why people could go into a MH decline after stoma surgery.
I have spoken to lots of people that really dislike their stoma and they just want it gone. Many of them are awaiting reversal surgery and they cannot wait for that day. A year or so ago, I was a guest speaker at an event for people with stoma’s. This event was aimed at helping and supporting people with stoma’s. There were young people, middle aged people and elderly people. The elderly people had that typical British stiff upper lip and let’s just get on with it attitude. I found a lot of the younger and middle aged people were the ones suffering with their MH and disliked their stoma’s, some of them even used the word ‘hate.’ Hate is a strong word and to feel that way about your stoma may mean you need help to address these feelings.
I found myself needing to address this with these people and find out why they felt that way. What a lot of it came down to, was they thought they were too young for a stoma and were concerned about the public’s perception of stoma’s. A number of these people were ashamed of having a stoma, despite it being life saving surgery. This just highlights to me that there is still so much work to be done in reducing the stigma of stoma’s for everyone, but especially the young and middle aged. Surely, if we can reduce the stigma, we can help people’s MH and help them lead a happier life.
Do I have a mental health illness? Yes I do, I have depression and, at times, awful anxiety. Am I medicated for my depression and anxiety? Yes, I am. Is it stoma related? No, however Crohn’s Disease affected my MH in the past. It took years to get diagnosed with Crohn’s Disease. I am fairly confident I have had Crohn’s symptoms since I was a child, I certainly had symptoms. When it came to going to the toilet, I would have accidents as a child, teenager, and then into adulthood. Once I was well into adulthood the symptoms became worse and worse, and my quality of life suffered. I spent so much time in hospital with awful symptoms and yet I was still not getting a diagnosis. I was accused by medical professionals as being a drug and alcohol abuser. People close to me were starting to doubt me and they felt I was making it all up. My wife and two closest friends never doubted me, which was a huge help.
Despite their support, my mental health was in a terrible place and I went to some very dark places in my mind. Yes I contemplated suicide, I felt I had nothing to offer anyone and nothing to offer this world, this was despite having my amazing wife, children and friends. Eventually I was diagnosed with Crohn’s Disease and this was such a relief to me. I finally had an answer and I could start to understand what was happening with my body. However, the symptoms still persisted and became worse. I then started suffering with horrendous fistulas and abscesses in my bottom. By this point I had already had terminal ileum surgery due to strictures in the bowel. I had every medication possible and also spent about seven years on biologic drugs, none of this was really helping. I think in a five year period I went into hospital about twenty times and had abscesses removed time and time again.
Of course my mental health continued to suffer. I was now really struggling at work, in a job I love. I was at a stage where I could not perform well in my role. I dreaded going out for the day or going on holiday due to the amount of accidents I was having. It was daily! By this point I had lost all control of my bowels. Something had to change and change fast. I had an appointment with my surgeon and told her to take it all out and give me a permanent colostomy. Within six weeks of that decision, I was in the operating theatre having the surgery. Despite knowing what I would wake up with, I still found it quite a shock to see the stoma, but I embraced it and it changed my life.
Once I was fully recovered from the surgery, my life improved. I could now do everything I wanted to do! I no longer had to worry about accidents, I had energy again and my weight increased. After a while I was promoted at work which was a fantastic achievement. I have had my stoma for over 7 years now, and I have never looked back. It was the best decision I could have made in terms of my health. Everything got better.
Yes, talking about MH with a stoma is difficult because mine improved and I have never been afraid to talk about my stoma. I want to talk about it. I want to educate people that no matter your age, people can have stomas. As mentioned, there is still a stigma around them, they do not smell, they are not just for the elderly, they can change your life for the better.
My advice to anyone who is struggling with MH illness and who has a stoma is talk. Talk about how you are feeling, talk to people that advocate for people with stomas, talk to people that have stomas and an active lifestyle, talk to supportive friends or family, or talk to your GP. There is someone in your life that is the right person to talk to, you just need to find them. Do not be alone. There is so much help and support out there, especially from people with stomas. Use social media, there is so much good on social media that can help. Counselling can be very beneficial for some people and so can anti-depressants. I found that once my mood is lifted through medication, it enables me to talk about how I am feeling. My mental health illness isn’t linked to my stoma, but the same would apply if it was. This is why I want to raise awareness on mental health illness and break down the stigma of having a stoma.
Finally, if you are suffering please do not be alone, there is support out there, let’s reduce the stigma together.
Take care,