Alison's story
Subpar options
The botulinum toxin injections were a gamechanger. However, I spent the next 8 years enduring persistent trauma and discomfort caused by using catheters, alongside the challenges that come with having MS. For the first 8 years, I trialled a variety of different catheters available on the market. However, all these options were subpar. The main problem was the lubrication, which tended to have a sticky texture and a plastic-like coating. Upon catheter withdrawal, I would experience significant discomfort and feel as if my insides were being pulled. It was akin to encountering something extremely adhesive within the bladder. Another concern was the residue left behind by the sticky substance. I feared that, if it remained in the bladder, it could serve as a breeding ground for bacteria, increasing the risk of UTIs.
During that challenging time, I suffered from frequent and severe UTIs, and I became reliant on antibiotics. To combat potential infections, I had to undergo intravenous antibiotic treatment in the hospital. Being in a hospital environment increased the risk of sepsis. Relying on antibiotics for 8 years raised the possibility of developing antibiotic resistance, which is a major concern in the current healthcare landscape. This situation was truly terrifying. I am certain that the heightened risk of infection is a common problem faced by many CSIC users, and anything that can minimise the risk of infection is of utmost importance and value.
Reaching out
The recurrence of infections was taking a toll on me, and it exacerbated the already challenging nature of my MS. Eventually, I reached a point of desperation and felt utterly defeated. Around 2–3 years ago, I was dealing with a severe UTI that left me feeling debilitated. In a moment of frustration, I reached out to the general support line and expressed my struggles. The person on the line offered to have a nurse from Amcare contact me. As I was not receiving much support from the hospital at that time, I welcomed the opportunity for assistance. The Amcare nurse who reached out to me was very helpful and competent. She explained the problems associated with sticky catheters, describing how they would often drag and cause damage to the urethra when being removed, leading to potential trauma and increased risk of infection. Additionally, she noted that the sticky substance used in those catheters would stick to the leg when they accidentally came out. These were the same unpleasant issues I had faced with all the catheters I had tried.
New approaches
The Convatec nurse then introduced me to GentleCath™ Catheters with FeelClean™ Technology, which presented a different approach to coating the catheter’s surface and providing lubrication, using sterile water. At the time, I did not fully understand the scientific aspects of this technology, but I felt that water, which naturally occurs in the body, would likely be less traumatic and harmful than the synthetic, sticky substances in other catheters. These catheters were relatively new, and not many people were using them. As soon as this technology became available, I decided to give it a try. I noticed significant improvements quite swiftly. Using GentleCath™ Catheters with FeelClean™ Technology was a much smoother and gentler experience, especially during retrieval. This seemed to result in fewer traumatic incidents and UTIs.
Receiving my catheters from Amcare by Convatec
I receive my catheters through the Amcare delivery service, and overall, I have been quite satisfied. The staff at the call centre are particularly helpful. There are times when I forget to place an order, especially with the chaos of having three teenage kids in the house. Sometimes I find myself down to my last box of catheters and start to panic. However, the Amcare team goes above and beyond to assist me. They ensure that I receive the supplies promptly and even handle the necessary arrangements with my GP. This relieves a significant amount of stress and anxiety because, we all know how challenging it can be to get through to the GP’s office for a prescription.
The delivery process is also impressive. When I am running low on supplies, the catheters often arrive within 24–48 hours. It is remarkable how fast they manage to fulfil the orders. In some cases, they have even sent me a box immediately, so I would have it the next day, while simultaneously working on obtaining the repeat prescription from my GP.
A world of difference
Previously, my life revolved around planning outings based on restroom availability, and I have encountered some truly unpleasant restrooms. However, thanks to the care I receive, I can now participate rather than just spectate. It has transformed my life, allowing me to do things I never thought possible.
It is amazing that we can even travel abroad. Recently, we took a trip to the USA to celebrate my 50th birthday. One of the most unforgettable moments was taking a helicopter ride over the Grand Canyon. The breath-taking view left me in awe. It was a special moment because, despite all the obstacles, including MS and the mobility issues affecting my knees, pelvis and legs, we had accomplished something incredible.
Without the comprehensive care plan that supports me, such experiences would have been impossible. It has had a profound impact on my mental health, lifting me from feelings of isolation and despair to a sense of empowerment. Once again, I am able to socialise with friends and engage in other activities. Regaining control over my bladder has made a world of difference. I can empty my bladder before going out, reducing how often I need to use the restroom. Previously, it felt like everything was out of my control, and I was limited and held back by my bladder. It was debilitating and disheartening. But now I have reclaimed that control, allowing me to live a more normal life.
Reference: Protecting the urethra and reducing the risk of urinary tract infections with Convatec GentleCath™ Intermittent Catheters with FeelClean™ Technology, BRITISH JOURNAL OF NURSING, VOL 32, NO 18, SUPPLEMENT, OCTOBER 2023