I wasn’t going to write this post until later on but recently I’ve been poorly with flare ups of my invisible illness. When I was 17 years old I diagnosed with Ulcerative Colitis. I probably had it before this but didn’t realise the severity of my symptoms and hid it from my Mam for about 6 months. For those who don’t know what colitis is, here is a definition..
Ulcerative colitis is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly.
So in english.. that means that I suffer with ulcers inside my body that effect my colon and large intestine, this disease is something that I have to live with for the rest of my life and the rest of this post is going to be my experience living with UC. (It’s going to be a long one)
So, as I mentioned above I was properly diagnosed with UC when I was 17, this was after many blood tests, cancer screenings, stool samples and colonoscopy’s. UC is something that is often mistaken for IBS which is completely wrong and ten times worse. I was suffering with symptoms of UC for about 6 months before I actually went to the doctors, this included fatigue, blood in the stool and abdominal cramps. I got so scared thinking I had cancer that I didn’t tell any of my family until it was causing me severe pain.
So its now been 4, nearly 5 years since I was diagnosed and over this period of time I have learned to control my UC with countless hospital appointments and countless medications. I was moved from medication to medication and nothing worked for a good 2 years but finally this year I was referred to a specialised IBD nurse who helped me understand my UC and my own body and was eventually put on something that worked and controlled my symptoms! Unfortunately, I was under the impression that you couldn’t take medication under the influence of alcohol and I recently went on holiday and didn’t take any medication so I’m flaring up at the moment and have been put on a 6 week course of steroids to push me back into remission. Some days I have good days and other days I can hardly move because of the pain and I am constantly back and forwards to the toilet.
Luckily I don’t have the worst case of UC but I still suffer from symptoms on a daily basis which include fatigue, blood in stool and abdominal cramps. I’ve also had anaemia four times due to my UC and had two iron infusions to help get my iron levels normal again.
I have been on approximately 14 different medications to try and control my UC, some just didn’t work for me and others were too uncomfortable for me to take. I am currently taking suppositories which seem to help (when I remember to take them).
I had a bit of a breakdown the other day coming back from hospital with the realisation that this is my life now, I have a disease. Something that is only controlled by medication, which is a hard thing to get my head around. But I’m learning to live with it and I have a lot of support from my boyfriend and family.
Well, that’s my story.
If you have any questions about UC or myself, please comment below!