My continence nightmare

man holding crotch
It's not just women who are affected.

My experience with continence has not been an easy one, but after years of living with Ulcerative Colitis I feel more comfortable talking about it, especially since so many other people around the world are living with the condition.

I was just a 14-year-old boy when I was diagnosed after being rushed to the hospital in the early hours of the morning with pain in my stomach.

The sharp pangs were so severe, I couldn’t physically move without great pain and I wasn’t eating or drinking.

The doctors told me I had Ulcerative Colitis, a long term condition where the colon and rectum become inflamed.

Small ulcers can develop on the colon’s lining which can bleed and produce pus. It is long term, however if the bowel and rectum are badly infected, it may lead to surgery in order to remove the affected areas as happened to me.

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I had unplanned major keyhole surgery which led to the removal of my entire colon and rectum and having two stomas fitted. As my condition had reached such a severe stage, removal was my only viable treatment option.

I also had to take daily medications to reduce the inflammation. I had a strict diet plan to follow for the next few months after being diagnosed, to keep my insides from growing more inflamed. I also learnt that fish oil supplements can reduce inflammation, which helped me at the time.

The first few months were difficult and I was advised to follow a strict diet.

Eating foods like pureed soups, crackers and cereals made with refined white flour were important to make sure my insides stayed as calm as possible.

I was also told that when I was eventually mobile and moving about, I should always keep a lookout for nearby toilets to avoid difficult situations.

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Living with a stoma permanently attached to my body made certain situations a little tricky, but I picked up tips along the way that made life a little easier.

I’d have more confidence when taking an extra stoma bag with me when going out, simply hidden away in my pocket, and if a situation occurred, I would always have back up and not be lost or struggling on what to do next.

Another useful tip is applying extra pressure to the adhesive with sticky tape. From this I felt positive the bag would stay strong and I could continue with my normal daily life, including sporting activities.

One of the side effects to my Ulcerative Colitis is incontinence. In the beginning, I had to relieve myself more than 10 times a day, but that has thankfully reduced over the years.

Advances in modern medicine have made the condition manageable and of course a positive mindset goes a long way.

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Eventually, I was lucky enough to have reversal surgery and was fitted with a J pouch, which allows my waste to go through my system and be released into the toilet instead.

Even though I had become accustomed to the stoma, and never let it stop me doing what I wanted, I have become a lot happier since.

For anyone else going through something similar, I cannot recommend anything better than the power of positive thinking.

Surround yourself with the support of loved ones, as you’re not in it alone, and make sure to follow the diet plan recommended by your healthcare team at the very start.

This week is World Continence Week from June 19-25. Share your story and join the conversation about continence today.

Do you have continence issues? Can you relate to this story?