By Claudia

Today I’m sharing a big part of my life. In my teens I started to get sick and was not taken seriously. This continued on into my very early 20’s. After what felt an eternity where I felt like I lived at the doctors, and after a long wait and many questions I was sent for my first of a few colonoscopies and endoscopies. In recovery after the colonoscopy, a nurse told me the surgeon wanted to talk with me once I had eaten my sandwich and had my juice. He had answers for me, finally, after years of feeling awful.

My first symptom had been reflux – so bad even a glass of water would set it off. Then it was toilet trips, which were painful and I won’t go into specifics here. I was once told it was IBS, but I wasn’t given any information on what it was. Irritable bowel syndrome was the conclusion with no tests to come to this diagnosis. I researched what it was and made some diet changes, I cut out dairy and limited my intake of gluten and for a little while this helped lessen my symptoms.

In 2004 this would all come to a head and I was sent to a surgeon for the aforementioned colonoscopy and endoscopy. When I saw the surgeon I was formally and finally given a diagnosis; I had Ulcerative Colitis. An inflammatory bowel disease which left a high 80% of my large intestine ulcerated and inflamed. No wonder I was in so much pain that I couldn’t even rest my back on a chair. I was given a high dose of steroids and other medication to start on immediately, and booked a follow up with the surgeon 2 weeks later to see how I was adjusting to the medications. It wasn’t until many years later that I realised you don’t usually get a diagnosis straight after waking up from such a procedure.

Over the next 13 months I struggled with living in a constant state of flare up every time I was weaned off the steroids only to be put back on them. I had to stop working, and I had to withdraw from my university studies as the stress of work and assignments was too much for me.

On the 26th July 2005, a date that is forever etched into my body and mind, I woke up and said to one of my parents that something wasn’t right and I needed to go to the hospital. The 2 weeks prior to this day I’d had a fever that wouldn’t break and couldn’t do anything due to pain and exhaustion. I noticed that I was starting to look yellow but decided that it was the lighting’s fault, and had drastic weight loss as well. I was taken to the emergency department in Bunbury and after a short wait I was taken through to be seen by a doctor. A lot of what happened in ED is hazy, but there were lots of blood tests and pain relief. I was admitted to the medical ward to be assessed by a surgeon. Once in the ward I had another set of obs taken, and the heart rate monitor went crazy, the nurse thought maybe something had happened to the pulse reader even though it was working on the patient before me. She tested it on her finger and it was working properly. So I had a visit from the ED dr who has sent me up, the stress of moving me from one ward to another put too much strain on my body.

The hours that I was on the ward saw me have more blood tests, I was told I had gastro or a bad flare up of the ulcerative colitis and I would be home by the end of the day. Boy was that wrong! The surgeon came to see me, his assessment – my appendix had ruptured and I needed surgery, but before I could go to surgery I would need a blood transfusion.

I was told the risks of surgery, and that it would be 45 minutes to an hour. I was taken to the theater and the next thing I remember is waking up in recovery in pain and crying because of the pain. I was given as much pain relief as they were able to give me and me crying asking for my mum. She was brought in, I asked her how the operation went and the words she said almost broke her and me “baby, they took it all”, “what do you mean they took it all mum?”. “All your large intestine, and they had to give you a bag”. I didn’t understand completely at the time what it all meant, but I knew that it was big.

When I woke up in my hospital room I was confronted with the fact that I was given a colostomy bag and I now had an ileostomy. It wasn’t my appendix that ruptured, my large intestine had died and was leaking inside me, acute toxic megacolon with severe peritonitis. An ileostomy is where the small intestine is brought through the abdomen wall and an opening is created. Over the next 10 days I started my new journey, learning how to change my bag and handle the new way my body functioned. As part of my healing the Stomal Therapy Nurse told me to name my stoma, to help make an emotional bond with it and to help adjust to this new thing. The only name I could think of in the haze of pain relief and anger was Gertrude.

During the 10 day hospital stay, I learned to take care of my stoma, Gertrude. I was angry because for so many years I had been told there wasn’t really anything wrong with me. I was angry because I was told a stoma was “the worst case scenario. but that will never happen to you”. As the days came and went I learned how sick I had been and how touch and go it was, my parents were told that there was no way to save my life without the stoma; the surgeon told my parents to imagine the film between onion layers, that is what my large intestine was like and there was no way to know this before they opened my up. Day 8 came along and I was moved rooms, this is when I found out that the patient closest to the nurses station is the most critical. The nurses also told me that it was nice to see me a normal colour and no longer green.

Day 10 came around and I was finally able to go home! I had adjusted alright to Gertrudes constant presence, I was able to change my bag without too much hassle and was learning to navigate bag leaks and new sounds my stoma made. There were moments where I would watch it contract and relax, it was fascinating to be able to watch how my small intestine worked. This helped a lot in learning to appreciate that this weird, pink thing saved my life.

It has been 19 years and 4 months since that fateful day, and every day I am so thankful that I still get a chance at this crazy thing called life. Don’t get me wrong, there were days in the first few weeks where I had to wear gloves to empty or change my bag because I was disgusted by it. There are days where it frustrates me because the itching on my skin from the early stages of a leak is driving me mad, or I’m reacting to the adhesive I’m allergic to. There have been some monumental leaks where I have had to change bed sheets, have a shower so I can change my bag and my pyjamas. There is one moment that is still so vivid in my mind, I went out for lunch with my dad and just as our food arrived I realised that I had sprung a leak. In tears I told my dad I couldn’t stay because I needed to go home and change, I cried the whole way home. There are moments where all I can do is laugh at the sounds Gertrude makes, in moments where my stoma is active she is Gurgling Gertie, and there are moments where my stoma stresses me and causes anxiety. The first few years were hard, and there were definitely some dark days where it was hard to see that everything was going to be okay, I asked “why me?” so many times that I lost count. I was 22 when I woke up with a stoma, and as you could probably understand having a negative body image was something that took a long time to overcome. There was shame when I told people I had a bag, and dating was terrifying! I have had some negative experiences when telling a prospective date about having a bag, and as horrible as it is, I did have some males disappear. But for the most part, people have been really understanding and accepting. The decision to have a stoma was one that was taken out of my hands, but to make it permanent was my decision and this helped me to take my power back and stand proud that I am an Ostomate.

Years of chronic illness and life with a bag has taught me lots about myself. It has shown me how strong I am and how far I have come. 22 year old me would be so relieved to know that my stoma hasn’t stopped me from living my life, Gertrude gave me my life back. And I have overcome so much in the last 19 years! It’s still crazy for me to believe the events that led me to having a stoma, I have battled body image issues, anxiety, depression and post traumatic stress disorder; I have come out the other side with a lot more compassion, empathy and a love of being alive. There are days where the weight of having fought so hard would  tire me out and I need to retreat and recoup. But I always come out just that little bit stronger. While I have had plenty of bad days, the good ones completely outweigh the bad. I have such amazing people in my life who have been with me from the start of this journey and others who have joined in along the way, I am so grateful to all the people who love me, accept me as I am and have supported me. While it hasn’t been an easy journey it is not one that I could ever have any regrets over as it has made me who I am today. Along the way I have learned that there are so many more people than I ever would have thought who have had a stoma either temporarily or permanently for a variety of reasons. I have been asked so many questions about what having a stoma is like, are there foods I can or can’t eat (I’ve had weetbix twice since 2005 and lets just say they make me feel like I just might finally die…). I never shy away from answering questions and I am always more than happy to answer them, it has helped me heal talking about my stoma and it has also given other people hope and strength when they have been faced with having a stoma.

While there has been some stigma around stomas, and them being poorly represented in TV, there so many people who are living confidently with theirs and so many of us are helping educate others and sharing our bag life stories. My story is one of countless others who help to shine a light on life with a stoma and to show it isn’t the end of your life, it’s very much the opposite – it gave many of us our lives back. So if you’re reading this and have a bag just know there is nothing to be ashamed of, we get another shot at life, and if you need to talk to someone about your bag I am always more than happy to chat about it with you, or if you’re curious and want to ask a question I’m more than happy to answer and so far I haven’t had a question that I haven’t wanted to answer.

Thank you for letting me share my story with you,

Claudia and Gertrude