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After cancer surgery, Andie struggled with her neobladder and recurring urinary tract infections (UTIs). Learn how she took charge of her health and began living life on her own terms.
In 2012, Andie’s life was turned upside down when she received a cancer diagnosis. The treatment involved the creation of a neobladder, a replacement bladder made from a section of small intestine. While Andie expected to have a urostomy, the neobladder was a lot to come to terms with and learning to live with it has been an ongoing battle.
One of the biggest challenges Andie faces is the continual battle with urinary tract infections (UTIs). The neobladder requires intermittent self-catheterisation (ISC), which can make things complicated when it comes to UTIs. Standard tests like dipsticks may come back contaminated because the neobladder has been created from intestine.
Despite all of this, Andie remains determined to take control of her own care and make her voice heard. As a former psychiatric ward manager, she feels empowered to navigate the healthcare system and advocate for herself.
Andie’s journey with a neobladder and UTIs has been a catalyst for personal growth and self-discovery. She has refused to let her cancer diagnosis and ongoing health challenges define her life, instead choosing to find ways to overcome them and live life on her own terms.
Through her experiences, she has not only gained a deeper understanding of her body but has also become a passionate advocate for others facing similar challenges. Her story is a powerful reminder that with resilience and empowerment, we can conquer any obstacle and take charge of our health and wellbeing.
The hidden impact of urinary tract infections – how they disrupt daily life
My bladder has been created from a piece of bowel, and I find it more overactive and irritable than most. As my neobladder is generally irritable, at times I need to go to the toilet every five minutes. Other times, I might be able to wait for three hours. I can be up every hour in the night, and this becomes worse when I have a UTI. Typically, a functioning neobladder would be around every four hours.
For me, the worst thing about having a UTI is the onset of pain and the debilitation that comes with it. It makes me feel powerless and embarrassed. I live on my own, so when a UTI affects my ability to be able to think ahead, I forget to do things like put the rubbish bins out. There’s nobody else at home to cook me a meal, so I can get neglectful; sometimes I don’t even eat. In the past, I’ve let things like bills get out of control because I haven’t been able to physically cope with things. It makes my body ache, but not just my body, my soul aches with it. Then I feel like I can’t cope, like I’m a failure, and I just want to curl up into a ball.
I always feel elated when I’m getting better, but there’s always worry in the back of my head because I know it’s going to happen again. That worry never leaves me. I get kidney infections too, which are secondary to the urine infections, so it feels like my life is on hold a lot of the time. I’ve learned to dip out of society. People say they only see me when I’m bubbly, but that’s because I spend most of my time at home, especially when I have a UTI. There’s a loneliness because I can’t share what I’m going through. People say, “Oh, I know what a UTI is like” – which is frustrating, because having an occasional UTI is not the same as getting a UTI every 10 days, or one a month, like me.
Breaking down healthcare hurdles with a neobladder and UTIs
Fortunately, I’ve had the same clinical measurements team since my operation, and I think that consistency has helped a lot in terms of healthcare. They’ve been unbelievably helpful.
The doctors at my General Practitioner (GP) surgery held their hands up and said we don’t know what this is. We don’t understand what you’ve got, so we don’t know how to treat it. The clinical measurement team took over the whole thing. They liaised with the GP, gave them lists of medications and relapse indicators such as if I get tearful, pain, cloudy urine, etc. Them stepping in has made my life a lot more bearable. I can’t praise them enough. Now, I have medications at home so I can be proactive and start treatment before I must drop a urine sample off. Mine only get better with antibiotics, so it’s essential that I put them in straight away.
I’ve been very lucky. Although I’m nearly 10 years post-cancer treatment, most people I see give me all the time in the world. Neobladders are complex, and I think they take that into consideration. Having experience in a healthcare setting, albeit managing a psychiatric ward, helps me because I feel like I can talk on the same level as the medical teams I meet. It makes me feel empowered. I know what I can say and what my rights are. I won’t leave a room until I reach where I need to go. It’s all about the communication. Putting us in control. We must have a voice.
My experiences with UTIs taught me to take control of my health
When you’re coming out of any illness, you want to get better as quickly as possible. You just want to be right again. For me, learning to say no to things and not to push myself too far, too fast, has been a valuable lesson.
Mental health is just as important as physical health. Being honest with myself and the people around me – friends, family, and my medical team – has been really beneficial for me. I’d urge anyone that feels like they can’t cope to reach out and talk to a clinician.
Preventing the problem is just a crucial as finding a solution
Most of my UTI management is about prevention. For me, that’s mainly a healthy lifestyle and not putting myself in tricky situations. If I’m out and about and I’ve got to go behind a bush, it’s vital that I have the right stuff with me. I don’t want to risk any contamination, which might lead to a UTI. I also make sure I drink plenty and basically just look after myself to the best of my ability.
Andie has received compensation for this statement. The testimonials, statements, and opinions presented are applicable to the person depicted. These testimonials are representative of that person’s experiences, but the exact results and experience will be unique and individual to each person.
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