#UroStories is back after a little break and today we have the lovely Terry Thomas sharing his story. Terry is 65 from South Wales and we first connected when I started my blog last year. Terry was one of the first emails I received reaching out to me with his story as to how he got his colostomy and urostomy.
So Terry, take it away:
- Can you tell me a little about how you got your urostomy?
In December 2010, I was diagnosed with primary bowel and primary prostate cancer. This was very rare and two teams of surgeons agreed to perform the two cancer operations at the same time. These operations left me with a colostomy and a few post-op problems. I have to mention and thank wholeheartedly, the surgeons who saved my life. The bowel team was lead by Professor John Beynon along with his registrar Dr Martin Evans. Dr P. Bose was the urology consultant performing the prostatectomy. Dr Martin Evans has since become a colorectal consultant. I can't thank these surgeons enough and the other hospital staff. After three years of post-op problems, mainly water infections and a perineal sinus, another planned operation was carried out in 2013 to remove more parts of the bowel and repair the perineal sinus. During the operation, it was discovered my bladder was irreparable and therefore had to be removed and replaced with a urostomy. I developed sepsis during the operation which escalated into septic shock. The operation was cancelled and I landed up in intensive care. When I eventually come around I soon realised I now had two bags. Living with both bags has been a learning curve. I find the best way to cope is to realise how lucky I am to be alive. The very nature of the bags meant the inevitability of accidents happening. You learn along the way and I am now coping quite well.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
The toughest thing for me is the fear of leakage. After recovering for a few months When I first had my urostomy, I went out for a drink with my mates. You have to be very aware when drinking alcohol because for me I find the bag fills up a lot quicker.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
I would say it’s not the end of the world and you can easily cope when you get used to it. The bags have not stopped me from enjoying myself holidaying or swimming whether home or abroad. It's been over six years now and along the way, my wife and I have laughed and cried. I am now free of cancer and the sinus has closed. Apart from the threat of sepsis, life is looking good. Always look on the bright side.
- .Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I have not looked for any support groups as I am managing quite well.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
. I think the lions share of stoma problems are with the colostomy as these seem to be more common.
- How do you feel we can raise awareness for urostomies within the general public?
I think the best method would be through tv.y adverts.
- When you are having a down day what one thing do you do to keep positive that you find helps?
My wife and grandchildren keep my feet on the ground and leave me with happy thoughts.
Wow thank you, Terry, you have been through so much yet you still enjoy life and find the positives. A true inspiration! I hope one day when I come back home to Bridgend we will be able to meet with your lovely wife :)
Please join us next week where we have the amazing Laura joining us, not one to be missed!