Learning to accept my stoma
How long does it take to get used to a stoma?
Let’s cut to the chase straight away with this one. Like everything in life, and in fact, ostomy life, there is no set answer for everyone. Everybody is different. This question is similar to asking “how long is a piece of string?”.
In this blog post, I am going to explain the factors you may take into account when it comes to how long you may take getting used to your stoma, including discussing if you’re not there yet, or if you worry you may never get to that point of ostomy acceptance. I’ve got you! This is going to be quite a deep post, I feel, so if you feel you’re in the right headspace to read, grab yourself a cuppa (if you’re able to drink), get comfy and let’s get started.
Emotional stages after ostomy surgery
Having ostomy surgery is a big thing to go through so it is understandable that emotions following can feel intense. Although, for a lot of people, ostomy surgery is done with the main goal to enhance their quality of life or save their life, the change can feel sudden and big. It is sudden and big. After my surgery, even on the hardest days, I kept reminding myself of this and hope that in time, things would get better.
Emotions that are all natural following ostomy surgery, at different times or even at the same time, include:
- Shock
- Denial
- Anger
- Reflecting – i.e. “if only x had happened instead”
- Depression
- Experimenting – recognising issues and then trying to resolve them
- Moving on – adapting changes for ostomy life in your daily life
- Adjustment and acceptance
Dealing with grieving a loss and anger
Following ostomy surgery, you can experience a period of grief. This can involve grieving things such as who you were before surgery or grieving a loss of some of your organs. Similarities can be drawn between this and someone losing a limb and grieving this.
You may have lost your confidence or find it hard to see that in time, you will be able to do the things you want to. During initial recovery, this can feel tough especially if you were an active person before surgery. Even what you may see as simple things such as having a shower and getting dressed can feel like climbing Mount Everest. This is normal. After my surgery, for the first 2-3 months at least, it was definitely a case of “slow and steady wins the race”. As time went on, I would learn that actually, I was going to be able to do things I could only dream of pre-surgery.
Having the right support along the way with this is definitely a big one. Whether that be a loved one, a stoma nurse, someone in the ostomy community, a medical professional or all of these things. There are definitely so many people out there (such as myself) who have had surgery that would be willing to chat and listen. It’s warming to know that you’re not alone and a problem shared can definitely be a problem halved.
How did you end up with your ostomy?
What led you to needing ostomy surgery can play a big factor in how you feel towards it. If, like myself, you knew the possibility of needing ostomy surgery existed, then you probably had time to look into it. If you had a poor quality of life for a long time before surgery and felt like you were merely existing, an ostomy can feel like a brand new beginning. It definitely was for me. It saved my life. That doesn’t mean I don’t have my down days. Down days are all part and parcel of ostomy recovery whether than be immediately after surgery or years down the line. Nothing can prepare you for the reality of having an ostomy but I’d do it all again in a heartbeat to be where I am now.
If the first time you heard of an ostomy was when you woke up with one, then this is going to be a drastic shock and change to your mind and body. It’s so important to remember that people may need ostomy surgery (an ileostomy, colostomy or urostomy) for many reasons such as:
- Inflammatory bowel disease
- Slow transit constipation
- Cancer
- Diverticular disease
- Complications in childbirth
- Spinal cord injury
- Chronic bladder infections
- Being born with intestinal or rectal problems
- Hirschsprung’s disease
- Urinary tract problems
- A car accident
Whether your ostomy is temporary or permanent can also have a big impact on your emotions after surgery. Personally, when my ileostomy has been playing up consistently over a period of time, it has been hard in the past to get my head round that mine is permanent.
Finding your new ‘normal’
Feeling fear or anxiety towards the future and your ‘new normal’ can feel overwhelming but are also completely appropriate responses to ostomy surgery.
You might worry about adjusting to the ostomy bags and accessories, information overload, how your relationships with others might be affected, travelling, going back to work and so on. It can feel like there is a lot of uncertainty and may cause you to want to withdraw yourself and hide away.
As tempting as this can feel, I strongly urge you to share your worries with someone you trust. Even if they do not have an ostomy, they may be able to offer a fresh perspective and even suggest things that may help. Arranging an appointment with a stoma nurse and taking a written down list of your worries with you can also take a big weight off your mind. I found this so helpful. If you find your anxiety surrounding your ostomy doesn’t decrease over time, it may be helpful to speak to a doctor and see if they can refer you to a medical professional who may be able to offer support. It may feel like you’ll never get used to ostomy life, but you will. You will get used to it in your own time. There is no set time of recovery for ostomy surgery.
Summary
There can be and is such thing as toxic positivity in many walks of life, including the ostomy world. It is so important to try and think positively, of course, but it’s also okay and vital to cut yourself some slack if you’re feeling overwhelmed and sad.
Your body has just gone through a big change if you’ve had ostomy surgery and will take a while to adjust. This includes your mental health. It may feel like it’s never going to get better. For me, I felt like this for the first 4-5 days post surgery. I had complications and honestly did not want to make it through those days at the time, but knowing what I know now, it was so worthwhile. It was everything holding on and hoping for a brighter future.
What would I have said to my 19-year old self after ostomy surgery?
“Embrace your ostomy where you can and focus on the opportunities it will bring you and the memories you will be able to create that you could have only dreamed of before. Although this is a big adjustment, it will change your life in the biggest and best way. It has saved your life and you have every right to move forward, take the rough with the smooth and rock it!”