I am sorry this is a few days late, I have had a very busy week. Welcome back to the 4th instalment of the #UroStories series. Today we have the lovely Donna Wood from Tyne and Wear who is 32 joining us. We connected last year and she has been a great support and is equally passionate about urostomy awareness. Also, Donna started the Urostomy Support Tyne and Wear/North East Facebook group for other urostomates in her area.
- Can you tell me a little about how you got your urostomy?
I had interstitial cystitis detrusor failure and pelvic floor dysfunction which caused permanent retention and kidney reflux. This was only diagnosed after 8 years of doctors telling me it was pelvic pain and probably all in my head. Then they told me it was all caused by endometriosis until I was referred to a specialist and after various investigations, I had my diagnosis.
I tried every treatment but they all failed. I was eventually given Mitrofanoff surgery with a neobladder but unfortunately, I had septic shock and kidney failure post op and the neobladder became septic with multiple abscesses. This had to be removed 6 months later because it was causing too much kidney damage so I had emergency surgery for a urostomy in Jan 2017.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
Pain and the things I have been left with such as poor kidneys and bowel issues. Also, it is hard when people assume that now I have a urostomy that I am perfectly well. I struggle to overcome this so I am receiving treatment from health psychology.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Do not expect a quick recovery please take your time to recover and remember that feeling down, worried and anxious is perfectly normal because it's a massive change to your life and body.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
Friends I met in the hospital and probably Rachels blogs and stories are so inspiring! I feel there is not enough support from hospitals in aftercare.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Very much so, they always assume I have a colostomy and I find the knowledge is far and fin between. I feel nurses should be trained better to understand urostomies
- How do you feel we can raise awareness for urostomies within the general public?
I believe a way to raise more awareness in the general public could be newspaper articles, interviews, people like us attending doctors and training seminars to be asked questions. They could look at our stomas especially year one urologists and maybe we could attend conferences and get involved in a Q&A session to tell them our frustrations.
- When you are having a down day what one thing do you do to keep positive that you find helps?
My dog walking and remembering I am still here and there is always someone worse off than me. My dog really keeps me going and I have great family support.
Thank you for Donna for sharing your story. You are an inspiration and I know you have supported many people before their operation and afterwards.
Please tune in next Monday for #UroStories where we have the very knowledgableble Trevor sharing his story.