So I had my first Gastroenterology appointment in a long time a couple of days ago and I am so happy with my new doctor. She's actually a registrar which means she is training to be a consultant. It is the first time I have actually felt like my symptoms and concerns are being genuinely listened to. She gave me eye contact, not constantly looking at a computer screen whilst talking to me like my old consultant and it makes all the difference. I told her about the urgency, stomach pain, joint pain, constipation and fatigue I've been suffering with, which she seemed intent on sorting out. SUCCESS! Now I'm to have some tests done and a follow up is scheduled for 6 weeks time.

As she was writing notes in my file I asked..

"Can you tell me more about my Colitis and what type I have? Because I wasn't really told much about it when I was diagnosed."

She replied "You have Pancolitis, which means the entire large bowel is effected by the disease."

I was shocked. I had assumed I had the most common form of UC which effects the bottom/left part of the bowel after researching it a bit in the beginning and thinking back now, I don't know why I thought that. I am also so angry. Why wasn't I told this in the beginning?! I have the most severe form of UC and I wasn't told by the professional I trusted. In the beginning I didn't even know there were different types of UC, it was only when I did my own research. Patients shouldn't have to do that! All of the information should be presented to them.
Thankfully now, I have a very caring and clued up doctor who wants all of my symptoms under control, which she thinks moving to the next medication may be a possibility. It shouldn't be too long until I find out. For now I've been prescribed another delightful drink to ease the constipation and help me heal. Boom.

Pancolitis is the form of UC that has the highest possibility of requiring surgery. My mission in life from this day forward is to avoid it coming to that outcome.

Published by Elle Quinn