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A matter of life or death

January 2019, I was 24 years old and was on a month-long trip around South-East Asia. Towards the start of my trip I had noticed some of my IBD symptoms coming back after being in remission for 7 years, I didn’t think much of it and made a mental note to see my gastroenterologist when I was back in Australia. Things took a turn for the worse when I was in Vietnam, I had caught a stomach bug (which was later identified as salmonella). I was unable to enjoy the last few days of my trip and was mainly stuck in bed. This is the start of my story towards losing a major organ and gaining a stoma and ileostomy. 

I was diagnosed with Crohn’s Disease at 14. During the first few years of my diagnosis I went through many medications; they would all work for a few months and then stop working. Finally, we found one that worked, infliximab, it put me into remission for 7 years allowing me to breeze through university and my first 2 years as a primary school teacher. Things were going so well that my gastroenterologist allowed me to come off it and be medication free (this was the year prior to my flare up in SE Asia). 

Back to 2019, I had arrived home from SE Asia and was in touch with my gastroenterologist straight away, I had blood tests and stool samples done and he put me onto a course of steroids to try and control the symptoms at home while they started the process of getting me back onto infliximab. Steroids didn’t work and my first dose back on infliximab didn’t make me feel any better either. Before I knew it, I was in hospital on IV steroids, this is also when I found out that I had contracted salmonella in Vietnam which had made my flare up even worse. After two weeks I was sent home on steroids, feeling only a little bit better. 

About a month after I was discharged, my condition started deteriorating rapidly. I was rushed back into hospital and my doctors tried some last resort treatments. After none of these working, I was told on the third day of my admission that I needed to have a sub-total colectomy. This would remove my diseased colon and leave me with a stoma and ileostomy bag. I remember refusing the operation and thinking that medications had always worked for my severe flares in the past, why wouldn’t they work now?

It was explained to me that this was pretty much a matter of life and death, and within two hours of them telling me I needed this operation I was under the knife.

Those two hours leading up to it were horrible, I couldn’t stop sobbing and I had no time to even process what was going to happen to me. 

After waking up from the surgery I felt good, I was in surgical pain, but I felt well within myself. Around the third day post-op I had immense pressure under one of my surgical incisions. This opened up and gushed with mucous… now to be a mucous fistula, my second stoma (which I still have). I learned the ropes about my stoma and bag, how to empty it, how to change it, the different types of bags and what not to eat to avoid ‘blockages’ and 10 days after my surgery, once I was well enough, I was discharged. 

Unfortunately, I only spent two days at home before being rushed back to hospital with sepsis. I would spend another 2 weeks there, along with receiving IV antibiotics through a PICC line for another 6 weeks. Along with this, the recovery from my surgery was not at all smooth sailing. I was dealing with reoccurring bowel obstructions and was admitted to hospital many, many times, each time I was told that it was caused by what I was eating. A few months later in November, after having 6 admissions within that month, I was told I had a twisted bowel and had a laparoscopy/stoma revision to fix this. Two days later my stoma turned black and I was taken into theatre for another stoma revision. I immediately felt so much better after this operation and could eat a wider variety of foods after because I was scared to eat for so long. 

But this unfortunately wasn’t the end of my rough patch, I developed another complication. This time it was the skin around my stoma. I was getting painful sores, which were deep and purple in colour. I went to a new stoma nurse who was also a wound care specialist who told me it was pyoderma gangrenosum and had my GP refer me to a dermatologist. It was extremely painful at the time but after a few months we’ve finally got it under control. 

I can finally say as of April 2020 I have been doing really well, 11 months after my original surgery. I am feeling myself; I work out 6 days a week and I can do most things I was doing in remission. I am yet to return to work, but this is because I am booked in for a J-Pouch surgery (my surgery was supposed to be in April but has been delayed due to Covid-19). I came to the decision of going with a J-Pouch because of how sensitive my skin is around my stoma and if the option is there why not try?

I have lived with an ileostomy for 11 months now, I know that I can live as normal of a life as anyone else can and if the J-pouch fails I will be fine going back to a bag.

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