Having a Urostomy improved my life

Katie Highton, aged 23 from the Scottish Borders has lived with bladder dysfunction for most of her life. After trying many treatments and surgeries to manage her condition, Katie finally chose to undergo ileal conduit surgery, which has left her with a urostomy. Here, Katie talks to Bladder and Bowel Community about how her urostomy has finally freed her from her debilitating bladder symptoms.

“I have lived with bladder dysfunction all of my life, which has caused both daytime and nighttime incontinence, urinary retention, chronic UTI’s, and severe bladder spasms. From the age of 6, I have been under a paediatric urologist who tried many treatments with me including bladder retraining and so many different medications.

Katie shows what her urostomy looks like.

“Once I was moved over to adult urologist services, I was then able to try bladder botox, intermittent catheterisation and then an indwelling catheter but none of these treatments gave me long term relief. It was after I tried a sacral nerve stimulator and this didn’t work that it was decided I would need to undergo surgery, and I was given the option of a urostomy or a mitrofanoff and I chose to have a urostomy.

I underwent surgery to have an ileal conduit

“In January this year, I underwent surgery to have an ileal conduit, so I am a relatively new ostomate. The surgery has left me with a very large scar from my pubic bone to just above my belly button. Unusually my bladder was also left in rather than removed during surgery.

“Before my surgery, to be completely transparent, my bladder was ruining my life. I felt so on edge all the time about having an accident. I turned down trips as I was embarrassed by my nighttime incontinence and I just generally felt ashamed of who I was. As my symptoms progressed, I couldn’t even manage a full day at  work without horrific symptoms and I became so inactive due to the pain of my catheter. I felt trapped and completely controlled my bladder, it was a dark time.

Having my urostomy now feels so natural

“Having my urostomy now feels so natural to me and although I’m in the early stages of living with it, I’ve seen a massive improvement in my physical and mental health. I do have a slightly awkward stoma in terms of positioning, which made it difficult for me to manage independently but trial and error has helped me find my way. I have had a massive reduction in symptoms though, since my surgery. I have the occasional bladder and urethral spasms, which are not very nice but these are much less frequent now. I have also been able to stop all my bladder medications as my bladder is no longer in use, I just take the occasional antispasmodic when I need it.

“Mentally, my bladder journey has been so hard. I started to really struggle with the emotional and mental side of it all when I went into high school. As you can imagine, being a teenager with no bladder control is a very embarrassing and lonely experience. More recently, I finally accepted medical help with my mental health in the form of medication  which has made a massive difference and I am glad I took that step. 

Finding an online community has helped me

“When I was given the choice between a mitrofanoff and a urostomy, I found it so difficult to come to terms with the fact I was ‘asking’ for a stoma. I felt like a fraud and worried so much about what people thought of me. A stoma was my best option, but that doesn’t mean I wanted it to happen in the first place. Making that decision was one that really took a toll on me mentally, and I remember feeling so overwhelmed and confused in the lead up to the surgery. Bladder conditions can be so isolating, but finding an online community has helped me come to terms with my own journey and validate the way I have been feeling up until this point. 

“My friends and family have been so incredibly supportive throughout my journey. I never told anyone what I was going through until I was about 17 and I finally told my closest friend. She has given me endless support and love throughout this and I genuinely couldn’t have done it without her, I owe her so much. I cannot thank my family enough for going through this journey with me. I can’t imagine how they felt through it all and am so grateful that they continued to fight for me when I couldn’t.

We’re all made of tough stuff

“Having recently read Adele Roberts’ book, there was one quote that particularly stood out to me…

“So every time I see an ostomate, I know they’re made of tough stuff. I know they’ve had to dig deep – both mentally and physically.”

I feel she perfectly summed up us ostomates as a community. I am so proud of each and every one of us for fighting through our own battles.” 

Further Information

Whether you’re a new or a seasoned ostomate, there’s a wealth of information, advice and patient stories in the stoma hub on the Bladder and Bowel Community website.