Welcome back to #UroStories and today we have the very knowledgeable Trevor Harvey joining us! Trevor is 78 years young and lives in Stoke-on-Trent. Trevor wrote an excellent, honest post for me, which you can view here on 'The Possible Struggles of a Male Urostomate'.
- Can you tell me a little about how you got your urostomy?
I never had any pain/discomfort but I passed large amounts of blood and clots and was diagnosed with Grade 2 Papillary Transitional Cell Bladder Cancer PTA recurring after BCG (immunotherapy drug). The only solution was a cystectomy and prostatectomy that I had 12 years ago in 2006. No Chemo or Radiotherapy was suggested or given.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
As with most males who have gone through this surgery the lack of erectile function is a big factor to cope with. It does fade into insignificance when you realise your life has been saved. I never had a problem coping and dealing with the bag changes once the healing was complete. I do have a large parastomal Hernia but I intend to do nothing about it unless it causes me trouble. I wear a hernia belt when doing certain jobs which helps.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
It is definitely a scary diagnosis but it is not the end of life. I had 6 infusions of BCG and as I have mentioned above it did not work. The only option given was a cystectomy and I am glad because I would not have wanted to go through some of the long-term treatments others have gone through. I have been able to get on with my life almost normally after recovery from surgery.
- I found Identification has been the key to my recovery after my ileostomy and urostomy surgery. Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I joined the Urostomy Association soon after surgery but I only found out about them through a leaflet in my box of bags from Coloplast. I became a hospital visitor in 2011 after a training day away. I now run the North Staffordshire Bladder Cancer Support Group and we meet bi-monthly. I am also a member of the Urostomy Awareness Forum, Fight Bladder Cancer forum and I also attend our local Prostate Cancer Support group. You may be wondering why because I do not have a prostate but ALL OF THESE ARE TO GIVE SOMETHING BACK AND BEING GRATEFUL TO BE GIVEN MY LIFE TO LIVE. Hoping it makes a difference to someone else’s life.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Certainly, I do not believe our local Stoma Care Nurses are interested in urostomies, they seem to take more trouble with colostomies.
- How do you feel we can raise awareness for urostomies within the general public?
We will always be a minority group of ostomates because there are about 11,000 urostomates at any one time as opposed to 175,000 colostomates and Ileostomates coming somewhere between them both. We will never have a major presence compared to the other stoma types.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I never have down days because I am positive and I believe that “what will be will be, so get on with it “ Although the odd leak that has happened over the years is a little frustrating but must be dealt with by being positive and getting on with life.
Thank you, Trevor, for sharing your experience. You are extremely knowledgeable and I know you have helped a lot of urostomates both in the online groups and face to face. I really liked what you said about volunteering helps you give back and help others!
Please join us next week where we will have the lovely Natalie sharing her story.