My Name is Alice
I first got poorly out of the blue in 2012 aged 29. I was diagnosed with gastroenteritis but when I completely seized up and could hardly walk I knew it was something more. I went to see a rheumatologist who said it was reactive arthritis and thought I should urgently see a gastroenterologist. When I saw the gastroenterologist he admitted me into the hospital the following day, suspecting UC or Crohns he said I needed IV steroids and some tests. I’d heard of crohns before but not UC, I didn’t really know what it was. Unfortunately 6 weeks later I was still in hospital and discussing having my large intestine removed with a surgeon. I was told about Jpouch surgery which was suitable for UC sufferers and thought it sounded good so I had my temporary stoma surgery but during surgery my colon burst and I subsequently got a bad infection that kept me in hospital for another 8 weeks. I lost the ability to walk having been bed ridden, it was a bizarre time but the hospital staff were amazing and within a year I was well enough to have jpouch surgery. Sadly it wasn’t meant to be as within 8 weeks I started getting poorly again, it was then suggested I most likely had crohns not UC and therefore it was likely my pouch was failing. I then had a capsule camera test, I was fairly sure it hadn’t passed through me. 2 weeks later I was really poorly and back in hospital. Fast forward another 3 weeks and I was being transferred to St Marks hospital because nobody knew why treatments weren’t working. The day I arrived there I was told I was going for emergency surgery to remove the capsule camera, it was lodged and caused sepsis! I spent the next 3 years in and out of St Marks, usually for a couple of months at a time. I was on tpn and so frail.
I was actually too poorly to have my jpouch removed, I was too weak to survive surgery. Eventually it was decided we just had to go for it, it was 50/50 survival rate but I felt so horrendous I wasn’t fussed, I couldn’t continue like that. In September 2017 I had my jpouch removed and a permanent ileostomy but I also woke up with a jejunostomy!
I had that for a year, I had such bad adhesions where my jpouch had stuck to my stomach that they had no choice but to rest the majority of my small bowel. I was solely reliant on tpn which I had learnt to do at home, I was on restricted fluids too which I found so difficult along with having this ridiculously high output stoma that was also positioned in a difficult place meaning I lived in jogging bottoms for a year. I spent most of my time at home (I had to move back in with my parents & give up work) connected to a drip and just slept a lot. I dreamt of better times and being ‘normal’ again. Finally I got through that year and was back at St Marks to have the jejunostomy reversed.
Finally my luck changed at the surgery was a success, after 3 weeks recovery I was going home and I haven’t looked back since. My permanent ileostomy is great, I wish I’d opted for one straight away but hindsight is a wonderful thing! After 7 years of pretty much being permanently ill I’m now wonderfully healthy, back at work and enjoying life. Compared to how poorly I was life with a stoma is a breeze! I wear the comfizz tummy bands at night to give me extra security, I have some of the shorts for exercising and and I bought some of the swim wear too. I never thought I’d be brave enough to swim with a stoma but after doing hydrotherapy for my arthritis I joined my local leisure centre and up until lockdown I was going every week and loving it. It really doesn’t stop me from doing anything - other than getting really poorly again!