Having an Ostomy Doesn’t Stop me from Doing Anything
World Continence Week 2021
Originally published on: June 23rd, 2021. Last modified on July 5th, 2021
This week is World Continence Week so we wanted to share stories from our community to highlight just how many people are affected by bladder and bowel conditions. Lee Goodie has kindly shared his experiences of having Crohn’s Disease and Klinefelter Syndrome and how his conditions are spurring him on to help others.
“We are all completely different even if we have the same identical medical condition, it’s our personal genetics that make the condition unique to us and even though we may have similarities, how our symptoms affect us can be totally different.
“I have Crohn’s Disease, which has resulted in an ileostomy. A huge part of my large bowel was diseased and needed to be removed. My first operation was six years ago when my bowel ruptured and I went into toxic shock.
“Having an ostomy does not stop me from doing anything that I want to do and my Crohn’s Disease can sometimes slow me down but it doesn’t stop me. I believe we can achieve anything that we want to from life, I just sometimes have to take it slower and more steps than everybody else. I’ve had five operations so far and I live on 14 different types of medication to keep my Crohn’s Disease at bay. One of the medications is a time-release morphine that I take on a daily basis. The side-effects to this caused my bladder to go into retention which means I can’t empty it without the use of a catheter.
“I also have a condition called Klinefelter syndrome or KS for short, this means I was born with 47 chromosomes rather than 46 and it means my body doesn’t produce testosterone and my testicles are underdeveloped. They’re roughly 10 times smaller than the average man, this is because they’re redundant. Personally I choose to have testosterone injections because the lack of this can create complications with bone density and depression and personally I want to avoid both. I used to have one injection every 10 weeks but because my baseline testosterone is so low I have one injection every 10 days now, which I do at home. The drug is injected intermuscularly and whilst I’m on the injections it does mean that I have the regular characteristics of a guy without the condition and a normal-ish sex drive.
“Personally Klinefelter has never caused a problem because I was diagnosed before birth, but most men aren’t diagnosed until their mid 30s because 98% of us are infertile so if your testicles are smaller than the size of an almond it’s worth getting checked out.
“I am proud of both of my conditions and I’m proud of my past even though it was dark and troubled. Without going through what I have been through in life, I wouldn’t have become the man that I am today, and because of my history I now help thousands of people all over the world that are going through similar things. My Crohn’s Disease is severe and most of the time I’m stuck at home, but rather than wasting my day watching TV and feeling sorry for myself like I used to, I used my time for good and wrote a book.
“I’m now a published author, and without the Bladder and Bowel Community Support Group, I would’ve ended my life nearly two years ago. They gave me a massive amount of support when I was in an incredibly dark and suffering place.
“The more we talk about these invisible conditions the more normal it’s going to be for everybody. Whatever it is that you’re going through, remember, YOU’RE NOT ALONE!
“Speak out in a group, there is no shame. We all go through difficult times and rather than suffer in silence, speak out and let others carry you forward. Arm yourself with knowledge about your condition. Always listen to your doctor, but remember you’re the one that’s going through this, it’s your choice what happens!”
You can find out more about Crohn’s Disease and living with a stoma here, or if you would like to speak to someone about getting your stoma supplies and prescription medication delivered to your door with our Home Delivery service, give us a call on 0800 031 5406 or fill in this form.