“Today is world IBD Day (Inflammatory Bowel Disease/Crohns Disease and Ulcerative Colitis) I have been suffering with Crohns Disease since 2011. I’ve had countless blood transfusions, iron infusions and have been getting fed through TPN. It was a very difficult journey. It started with severe stomach pain, before throwing up everything I ate. I had bleeding and was unable to get up out of bed. I lost nearly 6 stone which was over half my body weight.
When I visited my GP he assumed I had a eating disorder, as did many other people that I met. I went to A&E countless times until they finally did a colonoscopy and it was determined it was Crohns Disease. After this I was in hospital for months, getting fed through TPN, on countless medications until they had no choice to remove half my bowel because I wasn’t improving.
I got on great after this, maybe just a few admissiosn until 2019, when my world was turned upside down. It was back with a vengeance. I have now severe complicated Crohns. I have contracted C diff while I was in hospital which was agonizing, I lost a lot of weight again and had to get fed through TPN yet again. I have 2 fistulas which may need surgery and I’m on 3 immunosuppressants, one which includes a chemotherapy drug. For that one I go to hospital for 2 hours every 4 weeks for an infusion.
I’ve had 8 admissions since June 2019 and I am still flaring since then. I really hope they find a cure, this can be devastating on your life. I’ve been out of work since then and I have only recently been able to start going for walks because I lost so much muscle, after been once confined to bed”