World Ostomy Day

World Ostomy Day is technically every 4 years but I don’t think a single ostomate acknowledges that since we are proud of our ostomies and the life it allows us to have again after being so poorly before them. We should be acknowledged every year just like cancers are and even food days! I just wanted to share a bit about my back story and how I came to get my ileostomy.

I have had my ileostomy for 3.5 years and it seriously is one of the best choices I have ever made because my life has never been better! I have quality of life back, very little pain and of course my beautiful baby Button. I had to fight for months, two surgeons and two hospitals to be accepted for my ileostomy. I thought my jpouch would have been the last bowel related surgery I would have at the tender age of 21 but that obviously wasn’t the case.

I don’t think I was ever healthy after that first surgery but I never really had anything to compare it too as I was sick with Ulcerative Colitis from being 10 years old. The un-diagnosed pouchititis got worse during my pregnancy with Ra-Ra but nobody was to expect it was inflammatory bowel related.

When Ra-Ra was two ish I started getting so ill that I was getting admitted into hospital frequently. It was horrible being away from her and 00Steve but I was hoping to get answers; it took awhile but a junior doctor took it upon himself to run tests which finally confirmed that I wasn’t well. I was referred to Gastroenterology who gave me a course of antibiotics before I decided to have the surgery. The first surgeon I saw told me because I had so much anger against being poorly I wasn’t mentally strong enough for the surgery. I have never left an appointment more furious than I did that one.

I was a couple of months later admitted into a different hospital where the surgeon there had done my after care from my first surgery. He said he had just received a letter about me that morning and agreed to run tests. He let me home on the condition that I came back in for the tests. I remember telling him about the mentally strong enough aspect and he looked at Ra-Ra and said anyone who has a toddler is mentally strong enough!

The tests showed that my pouch was severely inflamed and filled with pus. He agreed that I could have the permanent ileostomy rather than a temporary one but on the condition that I had some counselling style sessions with the stoma nurses as I was so against having a stoma when I was younger. Mainly due to being told nothing about them!

I had to wait a few more months and had a few more admissions but I finally got there in the end! I have my irritations with my ileostomy but I honestly count my blessings with it everyday. There is the chance I may need more surgery on it in the future as the spout is non existent and can cause leaks due to pancaking which is a side effect of having Hypermobile Ehlers Danlos.