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My Journey - The Beginning

BeautifulBrokenOstomate my journey so far, The Beginning 6 years ago I had a life changing operation called an Ileostomy. Never would I have thought my life would change so much. I had come to a point in my life when living a normal life had became impossible. Having lived with ulcerative colitis for the past 16 years this disease had completely broken me. I had developed pancolitis which is a form of ulcerative colitis (UC) which affects the entire large intestine. It is a life-long chronic condition which cannot currently be cured and is part of a group of conditions known as inflammatory bowel disease (IBD). I had no decent life, being in and out of flares, I could no longer cope. Treatments failed and surgery was urgently needed. I hade my large colon surgically removed to eliminate the symptoms of pan-ulcerative colitis, however it didn't get rid of the disease as the surgeon didn't remove my whole rectal area. The disease returne...

Sharing a bed with my ileostomy bag

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Before my ileostomy, I used to love sleeping on my stomach, now I have to sleep on my left side (opposite side of my stoma). I propp myself up with pillows in front and behind me to prevent me from rolling in either direction. If I didn't, I would role over on my stomach and squash the bag.  Most of the time my body is naturally waking me upp when my pouch is at a certain level of fullness, every two to three hours. But if I ignore it or I'm too tired to get up and empty, my bag will leak and I will wake up in a mess. Some people get leaks from having a liquid output that breaks down the barrier faster or fills up the pouch fast. Other people get leaks from having a thick output that 'pancakes' and doesn't fall to the bottom of the pouch, and instead makes it's way in between your baseplate and skin. In general, the leaks are more likely to happen when you sleep on your stomach or back. Every morning I wake up to one of three possible scenarios, 1. Full of g...

Hello World!

This is my first ever blog how exciting. My name is Ulrika and I will blog about life and living with chronic illnesses,  I also have a 20 year old son. I suffer with ulcerative colitis and have an ileostomy due to this. I also have autoimmune hepatitis AIH (this type of liver disease occurs when your immune system attacks your liver cells). I also suffers from pyoderma gangrenosum, parastomal hernia and obstructive sleep apnoea (OSA).  I will use my blog to share the details of my everyday life and how I cope with all my health conditions.  I hope to help raise awareness, inspire and encourage and occasionally make you laugh.  I am a cup half full kind of girl and like to stay as positive as possible. I hope you enjoy a read while you are here, please subscribe if you like what you see!   Please feel free to contact me with any questions or if you would like a chat. Have a great day!

Living with an Ostomy

Since my original diagnoses in 2003 by specialist Dr H, I have suffered from ulcerative colitis. My ulcerative colitis was only mild until 2009, thats when I started to develop more severe flares and I was going back and forward to the UHW university hospital of Wales. Unfortunately my new specialist didn’t believe me, he said it was all in my head and that he thought my original diagnoses was wrong and that I only had IBS. It wasn’t until I demanded a colonoscopy in 2010 things started to change, for some amazing coincidence the person performing my colonoscopy was my first Specialist Dr H. He diagnosed me straight away with pancolitis, (often referred to pan-ulcerative colitis, total colitis or universal colitis pancolitis is a very severe form of ulcerative colitis and it’s spread throughout the entire large intestine including the right and left colon, transverse colon and the rectum). I remember asking Dr H - is it all in my head or am I ill? and his answer was oh no...