by Ian See
The start of having to learn to live with a urostomy is a distant memory, but I do think of it as a traumatic year or so of my life. The diagnosis of bladder cancer was devastating in itself, but then came the news that I had a serious heart problem. Chemotherapy for the cancer was unsuccessful and, in order to prevent the disease from spreading and to stop the unbearable pain, I opted for radical surgery to remove my bladder.
Unfortunately, this could not be carried out until my heart had been fixed. It took over six hours of open-heart surgery to complete five bypasses. Only after several months of recovery was I considered physically strong enough to undergo a second visit to the operating theatre.
It is truly amazing what was achieved by both teams of skilful NHS surgical and nursing staff. I am thankful to them and to my GP practice that I am alive and able to embrace this wonderful life in the company of my loving family and friends. I have heard it said that you forget the intensity of excruciating pain once it passes, and I have found it to be true.
Adapting after surgery
Adjusting to life with a urostomy was difficult in the beginning, but I think of it as having three main parts.
First: Because my stoma and I look after each other, it took a while to find the stoma bag that was reliable and perfectly suited me. A eureka moment came when I tried the CeraPlus pouch collected from the Hollister stand at a stoma care trade exhibition held in the Cotswolds. The pouch, with its convex shape when perfectly applied, was so reliable that I still smile when I think of it efficiently keeping me and urine securely apart. It changed my day-to-day life, giving me much-needed confidence when travelling on holiday abroad or visiting friends and family. Incidentally, adding a leg bag to my pouch for times when I’m driving long distances is a great help. My experience is that the bag should be emptied when it is no more than half full.
Second: Always have a fully stocked bag-changing emergency kit.
Third: My tailor-made changing table or platform. For details – read on!
A great day out until…
Earlier this year, I spent a weekend with my daughter, Rebekah, and her family in Portsmouth. We had a wonderful day out – taking a harbour tour and exploring the historic ships in Old Portsmouth Dockyard, imagining life on board Nelson’s flagship Victory and The Warrior.
In the evening, exhausted but very happy, I had a welcome rest watching a YouTube video. Eventually, I heaved myself up to go and empty my urostomy bag only to feel that dreaded wetness of a leak! Never good; stay calm; collect bag-changing kit, change of clothes from bedroom, and head for the bathroom.
Setting up the paraphernalia for a bag change in someone else’s bathroom proved to be stressfully difficult, there being nowhere suitable to stand the mirror, light, etc, at the correct angle and height. I think that fellow urostomates will appreciate the necessity of having everything to hand when bag changing. Timing is crucial because of the unpredictable and uncontrollable spurts and dribbles that occur. Success came after a long and frustrating struggle in the bathroom – what a disastrous ending to a perfect day!
Seeking a solution
On the way back home to Birmingham I called on my elder sister. During my short visit I told her of my frustrating episode and, having had her own experience with an ileostomy bag, she fully understood. We discussed my requirements and possible solutions. I was reminded of my designing and crafting talents on various projects in the past. Here was another challenge!
Via the internet, I searched the market but absolutely nothing was available. Then came a lightbulb moment – why don’t I design and handcraft a table to meet my specific needs? I listed the requirements and got down to work. What was needed was a portable table, or platform, that would fold flat to fit into the boot of my small car. It had to be stable, of the correct height, and large enough to accommodate the mirror, light, water bowl, wet and dry wipes, waste disposal bag, spray, etc.
That project concentrated my mind and kept me occupied for a while, but I was satisfied with the end product. The first table I made is not shown in the picture, but a modified version is. It’s actually simpler and perfectly meets my needs. Importantly, it fits neatly in my car boot, ready for my next venture away. My pouch changing kit is now complete and I feel well equipped to deal with any emergency that may arise.
The cloud of anxiety over travelling and staying away from home has been lifted and I have been given peace of mind. That is priceless.
Keeping fit and agile
As an 85-year-old now in good health, I want to avoid becoming an armchair-bound telly addict. I had to give up playing badminton but I now go to the gym for toning exercises and to use the machines for rowing, walking, cycling, and weights – all, I admit, on low-load settings! These facilities provided by the local council cannot be faulted and certainly help to keep me fit and mobile.
If my changing platform design sparks your interest, I’d be happy to hear from you and, if it would be helpful, I can make one for you. Please get in touch via the Urostomy Association.
- Ian kindly shared his story in the Summer 25 edition of our Journal
