I was 18 when I started feeling unwell.
For years, I was in and out of the hospital. At first, the doctors thought it was appendicitis, but they settled on ulcerative colitis, which put me on a heavy-duty drug (Azathioprine) for 12 years. It kept me quite well, but my gastrologist took me off it because she thought I was getting better. Weeks later, I began having rectum problems, and in 2015, I had a flare-up.
It spread to the left side of my colon, and the report said it was severe. Eventually, my husband took me to the hospital, where they were trying their hardest not to do surgery. I had to push for someone to see me for surgery, so the next day, I requested to see the surgeon.
He said I was very unwell and that my large bowel had to come out tomorrow. It was quite a bit frightening because I knew I had a stoma coming. Big operation, big recovery… I will have this thing forever. It’s scary.
“LIFE DOESN’T HAVE TO END AFTER A TRAUMATIC EVENT—IT JUST CHANGES.”
I had a rectal stump they stitched up to seal it. Because my bowel was so bad, it didn’t hold my stitches, so I ended up in the hospital for 10 weeks. I had a rectal catheter that was draining me so I wouldn’t get ill, and I had a feeding tube because I was so underweight.
Since then, I’ve developed a fistula. I’ve also had a big “flap” surgery, where they take muscles from my thigh to get rid of the fistula. It leaves you with dead space, so they fill it with your own muscle and use a flap of skin to cover it. Currently, I have procedures every 6 weeks at a big hospital in London that deals solely with bowels. To avoid another flap surgery, I get a video-assisted anal fistula treatment (VAAFT) surgery every 6 weeks.
Apart from all this, I am quite well. I still work 3 days a week, I go out, and I have a blog. My aim is to raise awareness of all things stoma and inflammatory bowel diseases (IBD).
Clare’s Advice:
Be your own advocate. It’s scary, but treat surgery as another option rather than a last resort. If you feel unwell, speak to a surgeon and get as much info as you can. Follow people on social media and see what their life’s like. You’re always going to have colitis, Crohn’s and flare ups… but you’re alright. Even though you have a bag, you’re still doing everything you have before.
Clare’s blog: TOMAS THE STOMA
