Case Study: Living with ulcerative colitis and a stoma
Incontinence can be a difficult subject for anyone to approach, but it’s often men who find it especially hard to talk about.
As part of World Continence Week, we’re encouraging men to open up about their experiences and are happy to introduce Steve – a man who was diagnosed with ulcerative colitis when he was just 14 years old and experienced incontinence as part of his condition.
Receiving a diagnosis
I was 14 when doctors told me I had ulcerative colitis – a long term condition which causes the colon and rectum to become inflamed. I’d just spent a number of weeks in hospital with a stomach ache so intense it left me unable to move. My days were spent curled up in a ball, with no hope of lying down properly, and it was a few weeks after being discharged that I received my diagnosis.
I was given medication and a diet plan to follow but because my insides were so inflamed, eating and drinking anything made me feel like I was on fire. I found it increasingly difficult to keep any solids in me which caused a dramatic weight loss. Going to school was out of the question and I missed a good 2 months whilst the doctors gave me steroids to help me eat and boost my weight. After a while, things seemed to get back to normal. My weight had increased and I soon learned to handle my stomach pain and go back to school; maybe the worst was over?
Needing emergency keyhole surgery
Then, years later at the age of 19, my ulcerative colitis flared up again. I was enjoying the last year of my college course when suddenly all the old feelings flooded back and I was immediately driven by my mum to A & E at two in the morning. The pain affected me so much I couldn’t sleep at night, or any time for that fact, so I was drained of all my energy – to the point where anything I ate or drank was coming back up.
I was assessed and given fluids through a drip, as that was the only way for me to keep anything down, and four weeks later I had emergency major keyhole surgery to remove my entire colon and rectum.
Life with a stoma
The keyhole surgery saved my life but it meant I now had 2 stoma bags on my stomach – one stoma was for waste and the other stoma was used to collect blood and mucus. My stoma nurse showed me how to handle, maintain and clean both of them, which I picked up quickly. She also showed me how to carefully cut a hole in the new stoma bags using a template, making it easier for me to replace the bag quickly when needed. I had plenty of time to practice and perfect my technique as, after the keyhole surgery, I was recovering and bed bound for a year and a half!
A rare opportunity
I lived with my stoma bags for 2 ½ years and it took me a long time to get used to them. At the very start when I could visually see them, I did tend to react. Social outings were tricky at first and seemed a bit scary. I was also a lot more constant with using the toilet, which I wasn’t used to. However, I never let my stoma bags rule me or get in the way of things.
Then, after speaking with my surgeon Mr Leinherdt and his team, I received the best news; recent tests showed I was now a lot healthier with NO ulcerative colitis, meaning was eligible to have my stoma bags removed and receive reversible surgery! In simple terms, this involved removing my 2 stomas and replacing them with a ‘J’ pouch inside the stomach, which you cannot see now. The pouch works like a small colon as all of mine was removed previously due to the effects of ulcerative colitis.
An interesting thought on reversible surgery
I was later told, after the surgery, that not many people have the chance of reversible surgery so I will always be very grateful for the care and opportunities offered to me by Mr Leinherdt and his team.
Having said that, my surgeon also explained that older people often want to have a stoma and choose not have the reversible operation when they are offered it. When I asked why, Mr Leinherdt went on to say how as some people get older they struggle to get back and forth to the toilet and therefore don’t want to put more pressure on themselves to try and make it on time. As I was much younger when my stoma bags were fitted, this is something I hadn’t considered and it made a lot of sense to me.
I have a yearly check up at the hospital with my surgeon just to see how I am coping, but all is well now. Luckily, because I was young, healthy and in good shape when I had my stoma bags fitted, I managed to overcome the surgery and the possibilities of having bowel cancer (being told at the age of 14 there’s a possibility you might have bowel cancer is a scary experience).
Emotionally and physically I’ve been through a lot, but thinking positively was a key solution to helping me get through everything. When I’m out and about, socialising somewhere new, my first thought process is still to always locate the nearest toilets and I don’t think that will ever change.
As for my ‘J’ pouch, my surgeon told me years after the surgery I will gain muscle inside it in my stomach. I have now developed muscle inside like he said I would and this means I’m now able to hold and digest food a bit better. I also take medications which help this, named loperamide, and in general I feel like I’m in a much better place.
To any other young men living with continence issues or a stoma I would say the following: think positively. Anything can be manageable with a positive mind-set. 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.
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- February 27th 2017