What I’ve learned from the experience so far.
Having Crohn’s disease has opened my eyes to a lot of things that I didn’t know existed. For instance, I have a new vocabulary now that includes words that I had never used or heard before – Colonoscopy, Humira, Asacol, Prednisone, and the one that has affected me the most, Ileostomy. Getting diagnosed last November was a huge learning curve.
A whole new world opened in front of me and I decided to embrace it with a positive mindset.
These words are now used in everyday sentences and I don’t even think twice about it.
Let me paint you a picture. Three months after my diagnosis, I was living in a lot of pain. I lost 12 kilograms in two months and I could hardly eat. Me being me, I ignored it. I struggled on with life thinking that this was going to be my life and I will just have to get used to it. But things were getting really bad. I couldn’t sleep because of the nausea and the constant diarrhoea. I was exhausted all of the time and having to nap under my desk at work. My body ached. I was having painful cramps and my joints hurt. I felt like I was 90 years old and I just thought this was normal. However, I started getting a pain in my stomach that was different from the normal pain. It was on the opposite side to my normal cramps and the pain was a sharp pain instead of a constant throb. Due to a public holiday coming up I thought I should finally do something about it (I did not want to end up in after-hours on a public holiday and have to pay the crazy prices to see a doctor). So I went to the emergency room and was quickly hooked up to many tubes. In addition to everything else that was going on, I was also severely dehydrated.
I sat in the emergency room telling my fiancé how this was all a giant overreaction and way too dramatic. I was fine!
Haha turns out I was the opposite of fine! And before I knew it, I was admitted to hospital for an unexpected three-week hospital journey.
My first stint in hospital was a week and a half. I was told that my Crohn's had become a hundred times worse and, after many scans, they discovered it was affecting two different places in my bowel. Whoops, maybe I shouldn’t have ignored my body screaming at me! During this stay, I was closely observed. If I improved I could go home and be scheduled for a bowel resection at a later date. If I didn’t improve I would have an emergency bowel resection and end up an ostomate. A what?! I had no idea what the surgeon was talking about. But then he used words I understood... poo bag.
A poo bag?! Mate, not on my watch!
Thankfully, I looked after myself and listened to the doctors and nurses and I improved considerably. I was released after a week and a half. FREEDOM! Best feeling ever.
But by now you all know I do have an ileostomy (stoma with the small bowel). So what went wrong I hear you ask?
Well, at first things were going pretty well. Two days out of hospital, I was planning to go back into work in a few days’ time and I was out and about feeling great. Then slowly but surely, something in my stomach started hurting. Then the nausea started again. Then the cramps came back in full force. And my diarrhoea was worse than ever. OMG, I thought to myself, this can’t be happening! Because I knew that if things got worse I would end up with a poo bag.
It’s obviously all in my head (I kept telling myself). But on day five I spent the whole day in bed. I couldn’t move. Instead of going to the doctors at a sensible time, I was in denial and I ended up in the emergency room at 11 pm. (You would think I would have learnt by now. But nope! Truly stubborn!) This time I was even more dehydrated. My body was so starved that they had to put a PICC line in and a tube went down my nose.
I finally realised that I had hit the worst-case scenario.
I’m sure most people would have realised this much sooner. But nope, not me. It took me bursting into tears (another thing I don’t normally do in public) as the nurse failed to put the nose tube in the first time and then tried again (I had never felt so much pain in my life!) to realise that this was rock bottom. I knew what was coming and I knew a stoma was in my very near future. Sure enough, the surgeon came into my room first thing the next morning and told me what I’d already figured out. He sent the stoma nurse into my room to talk about the logistics of having an ileostomy and where it would sit.
To be honest, all of this happened so fast that I didn’t really have a lot of time to process what it would actually mean and what it would look like in day to day life. All I knew was that it was going to make me better and anything would beat feeling like I was.
The surgery took place and was a success.
They removed 10 cm from my small bowel and were pleased to discover that the other section would more than likely heal itself. Some good news! I was so groggy for the first two days, I didn’t really have the head space to think about the new equipment sitting on the front of my stomach. But as I came around and I started to feel more normal, the different waves of emotions started. I would go through periods where I was totally fine about having a bag as it saved my life, but then I would go through times where I was so upset about it.
How was I going to live my life with a poo bag?
It was a huge change. What was my life going to look like now?
The surgeon came back and told me that the ileostomy was just temporary and that I would be able to take it off in about six months. Something to look forward to!
Once I was out of hospital, I still had waves of emotions. But to be honest, as time went by I began to feel more and more positive. As I figured out what life looks like with a bag, my emotions settled. Now, I love my bag. It is a part of me and it is normal. I’m able to talk about it with people now and don’t mind that it will be on longer than six months. It’s funny how things can change so quickly and so can your mindset.
So here is what I’ve learned from becoming an ostomate:
1. Listen to your body.
I’m not someone who likes to dwell on the past and the choices I have made. But I definitely like to learn from my mistakes. Before I went into hospital, my body was telling me it was unwell for weeks! Why did I ignore it? Because I’m stubborn. I shouldn't have ignored it! Now, I listen to my body. If something is wrong I will go to the doctors sooner.
2. A positive mindset helps.
When I found out what an ostomy or a stoma was, I was upset and angry that this had happened to me. But I didn't stay that way. I let myself be upset for a bit but then I moved on. I chose, and still do choose, to focus on the good that has come from having a bag. I can live my life now without pain. It’s helped me journey from being extremely ill and underweight to be the healthiest I have been in a very long time.
Let yourself feel your emotions and then choose to see the silver lining.
3. High waisted clothing is life.
I’d never been someone who wore high waisted clothing. NOW I LOVE IT! It’s so comfortable. I’m unsure why it’s taken me this long to embrace it. I’ll be wearing high waisted clothing long after my stoma has gone. Even my high waisted bikini is amazing!
Ask questions and find out all of the information - it makes situations less scary.
I like to know all the facts. So when I had my stoma, I asked my nurse all the questions. Her answers eased my mind and it took the ambiguity out of the situation. If you’re unsure of something, just ask. You’ll feel great being in the know.
If you’re someone who forgets things easily, write down the questions you have. This means you can have them with you when you are meeting your doctor/surgeon and you won’t forget to ask the questions that are important to you.
4. There are communities of amazing people who have wonderful advice and support.
Where I live there weren’t any support groups that I could join to help me through what I was going through. I know in other cities and countries there are, but unfortunately, in Christchurch, there wasn’t. I’m so lucky that I could connect with people online. Instagram has been one of my major support systems. Seeing others with ostomies has helped me to see having a bag as normal. It’s been great seeing people embrace their lives with a stoma and living a happy and healthy life. This was everything to me. I could connect with these people and gain support from them. Seeing people post about what they would wear, posting their own tips, or even posting about embarrassing situations they had ended up in, all made a huge difference. It made the experience feel a bit more normal. I am so grateful to these people and I hope I can support others in the way they did for me.
Becoming an ostomate was scary and it was life-changing. A lot of details of what actually happened in hospital are blurry, but the important aspects remain with me. This was a huge experience and I believe there are lessons to be learned in situations like these. Taking the time to reflect on them has helped me realise how much I have learned from my time in hospital and becoming an ostomate.
For instance, I now have a wider vocabulary! And I am a healthier person because of it.