Having any surgery can be a very daunting & overwhelming experience, fuelled with the fear of the unknown (definitely so, if planned) and often filled with conflicting emotions. Having an ostomy formed, whether we are talking about an ileostomy, colostomy or urostomy is major surgery and different for everyone.
Even for those, like myself, where ostomy surgery improved their quality of life significantly and even saved their life, the bad days still happen. This is normal and definitely not something you should be hard on yourself about.
Whatever the reason for your ostomy surgery and whether it was planned or not, in this blog post I am going to talk about my experience with the bad days and what I find helps.
The impact of an ostomy on Mental Health
Trigger warning: In this post, I discuss mental illness in some detail so before you read on, please do so with caution/self-care steps in place or avoid it if you are mentally struggling. Remember, my inbox is always open on my Instagram and via e-mail: ibdwarriorprincess@gmail.com. There are also mental health support resources here. Please remember that the views in this post are my own only. I am not a professional and am in no way giving concrete advice. If you are worried, it is always best to consult a medical professional/someone you trust.
Understandably, having an ostomy can be mentally challenging and for some, it also comes as a result of chronic illness. Mental health and physical health struggles can have a big impact on mental health.
It is perfectly normal and understandable to struggle with coming to terms with having ostomy surgery & the grieving process people can go through is often said to be similar to the grief process people go through who lose a limb. It may not be the same as losing a limb but you’ve still experienced a bodily change and lost parts of or some of your organs.
Your stoma nurse should be able to be a source of emotional support, especially pre and post surgery, in the early months, and should also be able to point you in the right direction to other resources which you may find beneficial. Also, your consultant or GP should be able to refer you to a counsellor or therapist if you feel this is something which may benefit you. However, it is so important to remember that your ostomy surgery was a big trauma to experience, therefore feeling out your depth and overwhelmed can, and usually does, start to ease as you get further into your recovery.
I also find social media really helpful, when used correctly. A lot of people I follow in the ostomy community on Instagram have become my friends, some even my best friends, and have helped to get me through dark days. Physical support groups can also be of great help once you feel you may like to give one of these a try. Links to these support groups can be found on websites such as The Ileostomy Association (IA).
11 years after ostomy surgery - How I feel
The one thing I have always told myself in recovery pretty much above everything else is that healing isn’t linear, like life, like our heartbeats, like the weather… Healing is full of good and bad patches with those “okay days” in between where I feel neither here or there about my ostomy. Thankfully, the good days severely outweigh the bad, in my case, and I am very grateful for the life I can now lead thanks to my ostomy, even if it isn’t problem free.
On the bad days, things can really suck & feeling all consuming when you have an ostomy, particularly if those things that are massively contributing towards the bad days start with your ostomy or are to do with your ostomy (ie chronic illness such as Crohn’s Disease or anaemia). I’ve learnt that pushing away these feelings only makes me worse, especially when trying to push them away and becoming increasingly angry when they don’t disappear. I often wonder what my life would be life if I could catch up on all the things I lost out on, being a child with Crohn’s Disease, but I have to reason with myself and use the techniques I learnt in counselling to accept the fact that I can’t relive those days, but I have the power to some extent to choose how I live my days now and that often, I’m more in control than I may feel.
Today and recently, I have felt okay with having an ostomy, but Christmas and changes in routine etc definitely made me think about my ostomy more and how different things can affect it such as change in diet over Christmas. Over Christmas, I felt less in control of my ostomy and more anxious, but thankfully didn’t have many issues. The thing that is probably one of the harder things to deal with is the fatigue with my Crohn’s Disease and finding the fine balance between knowing when to push myself and not, before it is to my detriment.
I have been experiencing problems with my ostomy narrowing and I require stoma dilation in hospital when needed, (widening where my ostomy leaves my stomach), which I can usually do at home myself every other day, but sometimes hospital needs to step in. Since this last Thursday, I have thankfully felt comfier and thought less about my ostomy.
Possible coping mechanisms for the bad days
I used to find one of the hardest things was getting myself to choose healthier coping mechanisms than unhealthy ones. Quite often, on bad days, I used to increasingly shut myself away in my room, away from everyone and everything and pray that I fell to sleep for a while before I fell apart.
Nowadays, through private counselling and exploring and researching my own self-help methods, I am thankfully doing a lot better when the bad days hit. It’s worth noting though that I still get those days where I just want to hide away and sometimes, I let myself do just that and do the things I enjoy like getting cosy in bed with a book. It’s okay to take some time out away from the world!
I try to remind myself that it is completely okay and human to struggle and try to focus on the fact that I’ve made it through 100% of my bad days up to this day. Often, it’s the “small” things that help (that actually are a pretty big deal and of big value to me) such as a cup of tea, my teddy bears, cuddles with my husband and dog, listening to music, having a hot bath with lots of bubbles, singing, getting into some clean and cosy clothes complete with fluffy socks and breathing in fresh air. I also love going to gigs.
As hard as it may sound, and it sure is at first if you have a bad self-esteem or relationship with yourself, one of the best things you can do to help yourself on these days is to speak to yourself as you would a friend. You don’t have to physically speak to yourself out loud, but often, people find speaking out loud to themselves and repeating kind words to themselves and phrases often helps more than saying them internally as they feel it can give the words more weight and meaning. It’s all about what works for you.
Something to remember
It’s important to remember that self-care isn’t necessarily all cliché candlelit bubble baths & pampering. It can be choosing not to skip a meal, choosing to exfoliate over scratching, cleaning up stacked up cups & plates, putting clean clothes on, brushing your hair or teeth, drinking water when you know you need it instead of going for wine on an evening & choosing to eat for energy over bingeing on sugar for temporary highs. It is okay to be sad and to just let yourself feel it when things are tough. However, making sure you don’t stay there is vital and knowing when to reach out for support and where. Listening to your body is so important and you deserve to feel better and to know that you are going to get through this.
Remember, you are not alone. Even on the days where it may feel super dark, you are never alone & it will get better. If you can’t talk to someone familiar, please make use of the Samaritans helpline (which is free): 116 123. Or there are other ways to get in touch if you can’t verbalise it.
You’ve got this!
Until next time,
