Diagnosed with Ulcerative Colitis in late 2009, I spent most of 2010 going back and forth to the GI department trying to control it with medication. Eventually we got the dosage of azathioprine right, and through 2011 I gradually got my life back on track. A few ups and downs after that, but largely under control.
Late 2024, I started feeling unsatisfied when pooping. In November 2024 I had a bout of violent diarrhoea, with pain afterwards — I assumed I'd strained myself. I was due an appointment with my IBD consultant in early December, so I thought I'd raise it with them.
Then, on the morning of the appointment, I took a phone call to say it was postponed until late January!! I got sent for stool and blood tests, but never heard back.
The pain and discomfort kept increasing, so I changed GP and saw a doctor on 2nd January. I was put on a two-week fast track!! Uh oh!! A swift CT scan, MRI, and colonoscopy with biopsies followed, and at this point it was clear to see the cancerous bits.
At a meeting in mid-February, I was told the biopsies were inconclusive, as it could be anal or rectal cancer, so I was sent for another colonoscopy and biopsies. All this time the pain was getting worse, and I was getting fevers, night sweats, and confusion. The GP just offered more and more morphine.
I got as far as 24th March, when my partner screamed at the pain department in the local hospital to get me admitted. I had another CT that night. At 3am I was dragged out of bed — I had sepsis, and was close to my body shutting down!! The pain I'd been experiencing was due to a bowel perforation and an abscess building up in my right buttock.
Three emergency operations followed over the next few days: a stoma was installed, and my buttock was opened up for an incision and drainage procedure. I was on HDU for a week, then down to the ward for two weeks.
I had confirmation of anal cancer, but now with an open wound and a background of UC, the doctors were concerned about what treatment to give. This went on until late May, when an oncologist took control of the case. I was advised of the risks — the UC might flare, I might not be able to cope, etc. But through June and July, 28 rounds of radiotherapy and 2 rounds of chemotherapy — completed!!
In late August, another fistula appeared from around the coccyx area. The loop stoma also started allowing poo to pass into the defunctioned bowel, but rather than passing through the anus, it emerged via the open wound in my buttock and the fistula!! In early October, a stoma reconstruction to an end stoma made life a little better.
Early February: cancer all clear!!
On 22nd May, I had ELAPE surgery to remove the damaged/knackered/unused anus, rectum, and bowel, with reconstruction of my bum using skin grafts. Access was via the abdomen, so I now have a bit of a zip belly, which has opened up a little in one place and is being treated as an open wound — cleaned, etc, daily.
So, yeah, that's my last 18 months. I'd never been hospitalised before. I'd been pretty fit and very strong, and was cleaning up my diet as I approached 50 — now I feel like I'm 60!!
