Managing a chronic illness can feel like a full-time job, especially when a stoma is involved.
Over the years, I’ve adapted a few ways to make it a little easier on myself and these small habits help me feel more in control, in a life that is forever unpredictable.
Having a medical binder
Creating a medical binder was one of the most helpful things I did for myself. I would recommend you guys try it for yourself! I got a pink binder and decorated it with cute stickers, you can do yours however you feel it reflects your personality. This helped things feel less medical and like I am more in control of my care.
Appointments can be overwhelming, especially when you have several specialists involved. So I have mine divided into sections: dermatology, gastroenterology and so on. I keep any important letters or scans inside of each section. By doing this I can refer back to them whenever I need them, and they’re easy to find.
If your mind goes blank the minute you get into an appointment, you are not alone! To help this, before every appointment I make notes on any questions I have, any symptoms or medication changes and I have this ready in my binder to go. It’s a game-changer on bad days, especially when my brain fog is bad.
I even use my binder to reflect after appointments. I write down all the important information while it’s fresh on my mind.
Advocating for myself
Advocating for myself hasn’t come easily. It’s taken years of frustration, trial and error. For the first few years, I didn’t know how to speak up or explain what I needed. On average, it takes someone with a serious autoimmune disease 4 years to be diagnosed! This can easily leave you feeling dismissed, and not heard. For years my ulcerative colitis went undiagnosed, however at the time I didn’t know how advocate for myself. I felt invisible and like my struggles weren’t real.
However, you know your body best, and this is important to remember. Don’t underestimate the power of your own voice. I now feel confident with my instincts, and I know when something is not right. Most importantly I can confidently express what I want from my care. Remind yourself that you deserve to feel supported and heard.
If I don’t understand something, I will ask for clarification. And if I feel unheard, I push for further tests or a second opinion. This ensures your care reflects your needs. If you’re nervous about advocating yourself in appointments, it can help to bring a loved one with you. Sometimes the support can make a big difference.
This is one of the most empowering things you can do with a chronic illness, allowing you to take ownership of your health by standing up for your needs.
Managing my stoma around appointments
Hospital days can be long, and that means planning ahead. I always bring an emergency kit with me just in case. In this kit I carry:
- A spare stoma bag change
- Medication
- Water bottle
- Flange extenders
Having this ready gives me peace of mind.
Over time, I’ve learned that small, intentional habits can make everything feel a little more manageable. For me, one simple routine is making sure my bag is empty before any appointment. It might sound small, but it gives me a sense of control and a clear head, so I can focus on what’s happening without that extra worry.
If I know I have a scan or procedure coming up, I always go with a freshly changed bag because this is another thing that boosts my confidence.
Balancing rest and reality
A vital part of living with chronic illness is allowing yourself rest, both physical and mental. Its easy to feel burnt out between constant medical care, treatments and appointments. Although, overtime I have learnt to allocate myself rest days. Sometimes this can mean cancelling plans or saying no – this is something I haven’t always been able to do! One of the hardest things for me was admitting when I needed to slow down as I am guilty for pushing myself too hard and facing the consequences later on.
Most importantly, you should be able to take rest and not feel guilty for it. Rest is not a sign of weakness, but what’s necessary to take care of your body and mind. Rest helps you recharge and face the next day with more strength. Its an act of self-kindness towards yourself.
Be kind to yourself – this one is non-negotiable!
its important to acknowledge your feelings whether its frustration, happiness, grief or sadness. Living with a chronic illness can bring a rollercoaster of emotions, and pushing them to the side doesn’t allow you to deal with them in a healthy way. For the first year of my journey, I ignored my feelings and pushed on, gaslighting myself into thinking I was ok. However, this only let those emotions pile up and become harder to process. It’s valid to feel this way. I have started seeing a therapist to help me understand these feelings, and find better coping mechanisms for myself.
Finding others who ‘get it’ has also been a game-changer for me. Whether it’s through Instagram, support groups or online chats; connecting with people who truly understand what life with a stoma is like makes you feel seen and less alone.
I have learned how important it is to be kind to myself on those hard days. One thing I do after a hard procedure or appointment is reward myself. This could be with a new set of pyjamas, or going somewhere for a nice coffee. These small acts of kindness are so important. So whatever your thing is, a bubble bath or to binge a good Netflix series – do it for yourself, because you deserve it! Those tough days can take it out of you, and its important to acknowledge that.
Sometimes getting through the day is enough and requires a celebration.
Living with chronic illness and a stoma means constantly balancing between managing your health and trying to live your life. There are days when it feels like all you do is go to appointments, but there are also moments of strength and peace.
If you take anything from this, please remember you are doing enough. You’re handling challenges that most people will never have to face.
Sending good vibes your way,
Alice x
@living_with_ileostomy
