Welcome to our first instalment in the Let’s Be OstoMATES series. This is where people from all walks of life who have had ostomy surgeries of all kinds (hopefully) can tell us their story, how it has affected them and how they have overcome any challenges. I think in some cases stomas can make people feel alone or alienated and I hope these brave people who have shared their stories can give you hope with your own journeys!
Im proud to introduce Sophie, From here on out it’s over to her!
My name is Sophie! I am 22 years old and a fairly recent ostomate, having had surgery on the 22nd of August 2016. My end ileostomy is called Squishy, and we get along rather well!
My journey with IBD began just over a year ago, October 2015. I had very mild symptoms at the time. No pain, no real problems, just a little bleeding. After a colonoscopy I was diagnosed with 1cm of inflammation, and given some medication to control it, which worked fine and stopped the symptoms. At this point, I wasn’t aware of UC or Crohn’s, and wasn’t told that I had any real inflammatory condition – just that it was ‘self limiting’.
Fast forward to 7th July 2016, I came home from work at lunch, having been suffering from severe stomach cramps, nausea, and my medication had abruptly stopped working for a few days prior. I had started to need to run to the toilet around 10 times a day, which was pretty scary! I went to the doctor, and was shocked to find that he recommended that I immediately attend hospital. I am grateful for his vigilance, as my entire life was about to be turned on its head.
Once at hospital, I was hooked up to IV fluids for the first time, and given an emergency sigmoidoscopy. The inflammation had become severe, and extended to 20cm instead of 1cm. This came as a complete shock, and I was officially told that I had an inflammatory bowel condition. Confidently, my consultant handed over a two-week supply of prednisolone 40mg, with a cheerful quip of, “You’ll be feeling better within a few days of taking these!”
For a lot of people, steroids such as prednisolone are a good temporary treatment for their inflammation. For me, it wasn’t to be. 2 painful, sleepless weeks later, my Dad drove me to the hospital, and I was told that I needed to be admitted again, as the steroids hadn’t done anything to help.
Once in hospital again, I was started on a downward slope of increasing medications that just weren’t helping me. Seven days of IV steroids followed by more oral prednisolone had no effect. At this point, I had stopped eating entirely, and was using the toilet up to 15 times a day with severe pain and anaemia; for which I had blood transfusions. (Thank goodness for all you wonderful A+ donors!).
My incredible family at this time were travelling for an hour and a half almost every other day to be beside me. Without them getting me through this period that I now have no clear, distinct memories of, I don’t know what I would’ve done. Most of this admission is now a blur of pain and gradually increasing weakness.
After a further catalogue of tests including 3 x-rays, 2 CT scans and a second sigmoidoscopy under sedation, it was decided that I would try Biologics. I had my first dose approved, and started on Infliximab as an inpatient. Things started to improve just a little, and I was let home.
Sadly, one week later, I was back again for my second loading dose, but the faces of the doctors told me that it wasn’t working quickly enough for their liking.
However, the universe, it seemed, already had plans for me. 5 minutes into my second infusion of Infliximab, I suddenly couldn’t breathe. It felt like an elephant had settled itself on my chest. The infusion had to be stopped and IV antihistamines administered. I’d had a severe allergic reaction, and was told I couldn’t continue.
In a couple very short months, I had gone from 1cm of minor ulceration, to 75% of my large intestine being completely covered in severe inflammation that did not respond to a single treatment. This was my first ever flare. As a surgeon sat explaining to me that I would need to have surgery, I was terrified, and felt like I had been robbed of the chance to ever be in remission. Surgery felt like the very last resort – surely there was something else that could be done? The answer was no – and not only that, but I needed to have this done within the next 3 days, because I was in danger of perforation and becoming an emergency.
From Friday to Sunday night, I waited. I was visited by my stoma nurse, and drawn on for the positions of my stoma and mucous fistula. I remember lying there and staring at the X-marks-the-spot sites, wondering how on earth it had gotten to this point. But I decided there and then that I was going to name my ileostomy Squishy, and that I wouldn’t let it ever stop me from doing what I wanted to do.
When I was finally taken down for the surgery, my family had arrived that morning, and I requested that my mum was allowed in up until the point that I was put under. The hospital was very accommodating, and I remember her standing beside me and the nurse saying, “This one just relaxes you,” then I was asleep.
When I woke, I was gladly not in pain, and I had my brand new friend Squishy. Recovery was a slightly longer process for me, as I came out of the operation at 41kg and requiring more transfusions along with TPN. But from the beginning, things started looking up. Squishy started to work almost immediately after the operation, which was a pleasant surprise for my surgeons. I had no major complications, no infections, and a fantastic button for pain relief!
On day 11 after surgery, I was finally allowed to go home. My appetite had returned with incredible gusto, and against all advice I ate my first takeaway curry for months the very first night out of hospital! It was absolutely incredible to be feeling so good after being severely ill for the past couple of months.
Even though all of this happened to me so quickly, and with such little time to prepare, the experience has changed my life for the better. Not just in terms of treating my disease, but my whole life outlook has significantly changed. Where previously, anxiety or hesitance would’ve stopped me from doing something, enduring the illness and resulting surgery has given me the confidence and perspective to just go out and enjoy myself more. Squishy and I get along extremely well, and I’m now able to eat and drink as much as I like, and enjoy everything again. In a way, I’m lucky that I didn’t have to suffer for years like many people with IBD do.
Thankfully, I have a wonderful, understanding boyfriend, family, and friends that all accepted me for who I am. I lost no one because of my stoma, only gained friends, and I cannot overstate my gratitude and happiness that I have such an incredible support network.
I’m grateful for the life that my little Squishy gives me, and he is now a wonderful part of me that I accept and love just as any other part of my body.
Life as a proud ostomate is great!
Thank you Sophie for telling your story and being so honest…next month its Donna’s story so please look out for that.