Katie

My journey with chronic illness started back in Summer 2018. I was getting symptoms for a few weeks but I just put it down to being worried about my granddad being ill, so I never went to the doctors, plus I was starting university the next month. After my granddad passed away, my symptoms got worse and worse. My cramps became excruciating and I started passing SO much blood. I managed to hang on until my 18th birthday but then I HAD to go and see someone as I couldn’t handle it. My doctor said straight away that she thinks it might be Ulcerative Colitis and rushed me off to the hospital immediately. At the hospital, I had all the blood tests, scans, tests, and procedures you can think of and was put in isolation with my own en suite. How fancy.

They finally concluded it was IBD and I began all the antibiotics and steroids you can name. I couldn’t eat much whatsoever so they also put me on those en shakes. After a couple of days, nothing was improving so they just kept increasing my doses. At one point, I became hypoglycemic because my blood sugar was that low from not eating.

My team let me out on a day release type of thing to go to my granddad's funeral with the strict instructions of keeping my IV line in and using a wheelchair. A couple of days later, tests were coming back worse so they tried me on the last resort biological medication called Infliximab. I was closely monitored during the infusion. A couple of days later, things were not improving and I was in so much pain. During the night on the 13th of September, a bunch of surgeons came barging in my room and called out “we need to take you down for emergency surgery”. I will never forget those words. It turns out that recent scans had shown that I had severe toxic megacolon and was at severe risk of sepsis if they didn’t operate immediately. I had never heard of IBD prior to this, never mind a stoma bag. I didn’t really, fully, understand what was happening. It was all a rush. I knew that I would have a bag, but I didn’t grasp all the events to come. So around 2 am I was practically thrown through the theatre doors and underwent an emergency sub-total colectomy with an ileostomy and mucus fistula. I woke up in recovery and was told that everything went well, they managed to contain the leak where it had perforated twice, as it was wrapped up in the intestine.

I had some issues with pain management after my surgery. My epidural failed and I was in AGONY and having multiple panic attacks because of the pain. They then quickly put me on a morphine PCA pump that released a dose at the push of a button every 5 minutes. With regards to my stoma, I wouldn’t look at my belly for days. The stoma nurse changed and emptied it, I wouldn’t even glance at it for a second. I was so upset; I didn’t want to see my new belly. When I finally did, I found out I had two stoma bags (I thought I was just getting one – not a pleasant surprise). I finally got to terms with changing my stoma bag and everything. Physio was trying to get me up and out of bed, after a few days of struggling, I finally managed to walk again. I was absolutely heartbroken that all my friends were starting university and I couldn’t, but always put your health first! I was tapering off my pain meds and had my staples out. I could finally go home.

Jokes on me, I was back in the day after. I ended up going to A&E because I’d woken up to a lovely gaping hole in my abdomen. My scar had fully opened up into a massive wound. Not pretty. But I was told that it is common and nothing to worry about. I then had to have my wound dressed by district nurses every single day. I was doing well until November, I started getting exactly the same symptoms as pre-surgery. I went to the hospital at the end of November and found out I most likely had proctitis and a fistula in my wound. Fab news. I had lots of meds, even enemas. Nothing was really working but I wanted to go home before Christmas. So they let me out a couple of days before.

Fast forward to now, I’ve been in the hospital a few times since and a few new diagnoses but nothing major. I’m currently on a new biological treatment, adalimumab injections every two weeks. I finally managed to get to uni in September 2019 after deferring and completed the first year in July 2020 with amazing grades!! I was due to have a proctectomy at Easter but that obviously got canceled which sucks but apart from that I’ve been good! Now just to wait for my surgery and tackle the second year of my law degree! :)

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Age: 19 years old

Instagram: @ibdkatie

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