Tom Wilson

Area Coordinator

“I have lived with a permanent ileostomy since August 2024 after I became very ill with Ulcerative Colitis, from January 24 to April 24 I lost about 4 stone in body weight and was struggling with acutely low energy levels and very frequent trips to the bathroom right through the night.  Having consulted with the IBD team in Sheffield I was given various different treatments that had no effect on the condition and resulted in them putting me on an intense course of steroids to try and control the flare up, this being the last thing they were going to try as an outpatient I pinned my hopes on it being successful, alas 3 weeks into the course with little benefit to show I was admitted so they could try biological treatments which again the UC showed little sign of easing up so I made a big life changing decision to have my large intestine removed entirely and have a permanent Ileostomy.  I found that even the very next day my energy levels had gone from 20% to almost back to where they were before the flare up began, I started putting on weight within the first 3 days and look at this decision as the best thing ive ever done as it truly has given me back some form of normal life.  There are still some days where I struggle with this new normal but I see that the benefits far outweigh the bad.  After discharge even though I had adapted to changing my own bag and being very grounded about living with a stoma I sought out local groups to seek advice and just connect with others that had gone through this journey, but found the local IA group had become dormant,  not being one to shy away from a challenge I chose to volunteer and get the local group restarted to make sure those that need the support and connection don’t feel like they have to go through it alone.”