So, I guess the symptoms started back when I was at University. I was rather chunky when I started university and over the three years that I was there, I lost a lot of weight. I had assumed that this was because I was living the student lifestyle, and I was naturally just eating less and walking more. Most of my money went on books and whatnot, and whatever spare money I had was spent on cigarettes and nights out dancing with my friends. So I went from about 13 stones down to about 7 and a half stones, over a very short period of time. Looking back now, it was a warning sign. But back then, I just thought that I was finally losing my puppy fat.
Towards the end of University, I developed other symptoms; the most noticeable one was pain after eating meals. It was really bad cramping. It’s hard to explain. It’s a bit like a really severe period pain, that kind of dull ripping pain. I figured it would eventually go away and so I did nothing about it. That was mistake #1.
The next few symptoms I’m going to talk about are toilet-related. You’re welcome.
At first, I had really bad constipation. Then I had terrible diarrhoea. Then back and forth between the two. Like, if you take the Bristol Stool Chart, I was practically running up and down it. Well, waddling up and down it.
Soon I started to find blood in my stool. Then I started going to the toilet about six times a day, sometimes more. Then I discovered more blood. Then more pain. Then more blood. Then more weight loss. I mean, I looked terrible.
At this point, everyone around me, including my boss at the time, was telling me that I needed to go to the doctors and get it sorted out. I replied with, “I’m too busy to go to the doctors.” I figured it would eventually go away and so I did nothing about it. That was mistake #2.
Needless to say, I was miserable. If you’ve ever had an upset stomach, you’ll know that all you want to do is stay at home and curl up and hope that it goes away. Which it didn’t. No, it got worse.
The pain got worse, the frequency got worse. I didn’t want to eat, not just because of the pain from eating but from the fact that I was sick and tired of spending most of my time on the toilet.
Diagnosis & Hospitalisation
Eventually, by November 2009, my parents dragged me to the doctors and I was diagnosed with Crohn’s disease. In February 2010, I was referred to a gastroenterologist where they took one look at me and said that I had to be hospitalised there and then. I was severely dehydrated, malnourished and I needed two blood transfusions because I’d lost so much blood. They gave me a LOT of steroids, antibiotics and immunosuppressant drugs, as well as various vitamins. And, of course, painkillers. Lots and lots of wonderful painkillers.
During the following months, I had several MRI scans, CT scans and a colonoscopy. The colonoscopy was excruciating. I’d never felt pain like that before. And don’t freak out if you’re due a colonoscopy, they’re not supposed to be painful. It was just because my colon was so damaged that every single second was agony.
And then, after my colonoscopy, my colon perforated. Yep. A nice hole in my colon. Great.
Again, don’t freak out if you’re due to have a colonoscopy. The only reason my colon perforated was because it was really damaged and fragile.
The thing is, we didn’t know this had happened at the time. I had been discharged back home, and been given a high calorie meal replacement thing called Modulen to try and help me gain weight and also rest the bowel for a while. Let me tell you something – Modulen is absolutely disgusting. I had to drink it for every meal, four times a day, for SIX weeks.
Despite it being disgusting, it did actually start to work. I seemed to be gaining a tiny bit of weight, and I wasn’t in as much pain as I had been. I was still on a LOT of painkillers though.
Eventually I was allowed to eat solid food again, and I was SO excited. It had to be low-residue, so it could only food that was really easy to digest, but even a bit of bland mashed potato was better than that Modulen!
But, within days, the pain started back up again. I noticed that I was getting a really severe pain in my left hip, and I was unable to move my left leg properly so I could only walk with a walking stick. My gastroenterologist presumed that this down to the high steroid dose that I was still on, as long-term steroid use can affect the joints and bones.
They found out about the perforation of my colon following another MRI scan. Basically, there was a hole in my colon, and all the waste that SHOULD have been exiting my body through the normal route, was just sat there collecting in my body cavity. It had caused my body to become septic, and I was dying.
“The Only Option Left is Ostomy Surgery”
I remember the moment when my gastroenterologist told me that ostomy surgery was the only option left to save my life. I cried. I cried a LOT. I was told on the Friday that I was having the surgery, and by the Sunday it had been done.
Let me just skip back to those two days before my surgery. A stoma nurse came and visited me and explained everything. She told me what the surgeon would do, she explained some of the terminology. She told me to expect either one or two bags when I woke up, depending on what happened during the surgery. She also told me that I could still have a normal life. To be honest, I wasn’t taking in anything she was saying. She told me she’d be back on the day of my surgery to mark the spot where the stoma would be formed. She gave me an information pack, which had a fake stoma and a bag for me to try, to get used to the feel of an ostomy bag.
I didn’t even look at it. Mistake #3.
Waking Up After Surgery
When I woke up from my surgery, I was in so much pain. Apparently I’d been in theatre for five hours. I remember seeing my mum. I remember trying to swallow water and thinking that the pipe stuck down my throat was way too fat for my tiny little throat. I remember feeling exhausted. I remember the pain the most though.
The first time I looked down at my abdomen, I freaked out. I had things coming out of me every which way I looked. I had a morphine drip, a catheter, an ileostomy bag, a colostomy bag, a drain from where they collected all the waste and pus from the perforation, and a giant dressing covering the laparotomy wound.
Yeah, you can understand why I freaked out.
Now, people always say they love how positive I am. That I adjusted to everything so well. How I am so bubbly and smiley, even after everything I’ve been through. Well, guys, I’ll let you into a little secret: I was NOT this positive after my surgery. In fact, I was a terrible patient. I cried all the time. Every time the physiotherapist walked over to my bed, I burst into tears because it hurt too much to even sit up, so I associated her visits with excruciating pain. She stopped visiting in the end, for a while at least.
Farewell, Belly Button
(Warning: Graphic Descriptions!)
A week or so after surgery, things took a turn for the worst. The excruciating pain wasn’t normal, and was actually due to an infection in the laparotomy wound, which had then started to reopen. My surgeons hadn’t stapled or stitched me back together after surgery, they used a sort of glue, which clearly wasn’t suitable and the top part of the wound had reopened. The surgeon was called and she decided that the only thing that could be done was to grab her scalpel and reopen the rest of the wound to avoid further infection – while I was conscious! It was the scariest moment of my life, and the experience of seeing everything that was going on, as well as seeing the inside of my abdominal wall, was something I wouldn’t wish upon anyone. The open wound was 13cm long, 6cm wide x 5cm deep! As it now had to heal from the inside out, the nurses had to pack & dress the ‘valley’ down my abdomen every day for a month, and then when I was discharged the district nurses took over. It took seven months for the wound to heal up, and it’s now left me with a cavernous scar down my lower abdomen. Oh, how I wish I had a ‘zipper’ scar like so many other ostomates have.
I was 24 when I had my surgery and, back then, I thought my life was over. I thought I’d be housebound, that I’d lose my job, that I’d lose my house, that I’d never see my friends. I had pushed a few people away while I was in hospital, because that’s what I do when I’m sad, or angry, or frustrated. Or scared. Mistake #4.
While I was still in hospital, I was so distressed that the ward sister recommended that I spoke to a clinical psychologist. After just one one-hour session of me just rambling away at a complete stranger, I felt SO much better. Just being able to tell someone how I was feeling without any judgement was fantastic. Many of the stoma nurses (and the other ward nurses) kept saying things like, “you don’t need to feel worried, it’ll be fine” – things like that didn’t help me. I WAS feeling worried. It’s like saying to someone “don’t be afraid of spiders” or “don’t be nervous about flying” – you can’t just switch those feelings off. So the fact that I was able to just explain how I was feeling and for the clinical psychologist to listen to me rather than dismiss my feelings was a great help. And after that one-hour session, I felt so much better. In fact, I never had to see her again. Before long, I had accepted what had happened, and I was even comfortable enough with it to name my two stomas – Stan (the ileostomy) and Colin (the colostomy). A month after I was admitted, I was discharged to the care of the district nurses, and back to recovering at my parents’ house.
Reaching Out to Ostomates
My recovery was long, mostly due to the laparotomy wound taking so long to heal. Seven months to be exact. In total, I was off work for ten months. During that time, I searched the internet for all things ostomy-related. From discussion forums to YouTube videos, from ostomy t-shirts to pouch covers.
The most valuable information I gained during my recovery wasn’t from the stoma nurse, but was actually from fellow ostomates on the UOAA discussion forum. I was having a few problems - leakage, skin breakdown, a pointy-down stoma which was retracted on one side, the baseplate not sticking to my scar tissue – none of which my stoma nurse was able to resolve during her visits. So, instead, I turned to my new online friends on the discussion forum and they were able to suggest different products to use, and different ways to do things. I was even referred to a dermatologist regarding my skin breaking down and by the time the appointment came around, I had already found a way of protecting the skin from the output with various different ostomy & wound care products – the dermatologist was actually impressed with my little system, which had been fashioned just from the advice given to me from other ostomates.
Ostomonday on YouTube
It was that advice from others that inspired me to start making videos on YouTube about my ostomy experience, because I knew that talking about my own experiences could actually provide some advice to other people who went through the same thing as me. I started a playlist on my channel called Ostomonday, where every Monday I would post a video about a particular ostomy-related topic.
But after a while, it became a lot more than just providing some tips and advice. People were emailing me, messaging me, tweeting me, all saying how my videos had not just given them advice, but had actually helped them cope with having ostomy surgery. Many of them were young females who said that I was an inspiration to them, proving that ostomy surgery doesn’t have to stop you living your life as a confident, young woman. And that’s definitely true. I’m still doing ‘normal’ things, and even more than I ever did before my surgery! I’m training to become fit and healthy (currently doing the Insanity workouts!) and I’m getting married in September, so life is definitely in full swing!
Hearing so much positive feedback from fellow ostomates means the world to me, and just knowing that my videos or blog posts could actually help someone makes all the bad days worthwhile.