Welcome to the 8th segment of #UroStories and today we have the fabulous Valerie Behnke, 60 from Ontario in Canada.
Take it away Val...
- Can you tell me a little about how you got your urostomy?
I had cervical cancer at age 32 and had very aggressive radiation treatment including brachytherapy. 25 years later (2012) I developed a rectal/vaginal fistula, unrepairable due to the radiation damage in the pelvic area, so that led to a colostomy. After about 1 year with the colostomy, my bladder started to malfunction. I could hold no urine, constant infections, blood clots etc. The only solution was a urostomy and I had this surgery in 2016.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
My stoma is very indented so I have leakage issues and even though I am physically able to do so, I can’t change my urostomy equipment by myself because I need an extra hand. I pull the skin around the stoma to ‘pop’ the stoma out and my husband puts on my bag. I also have trouble with dehydration but I am trying to be diligent with that. I find the cost of the equipment to be horrendous. Worries about infections are always present, but I try to do what is best to avoid that issue.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
BE PATIENT!!!!!!!!! Ask for help, either physical help or mental help!! The mental adjustment is huge and try not to underestimate the impact. Find a great support system! If the people that are in your life are not a positive influence and willing to hang with you throughout what is going to be a difficult but eventually successful journey, don’t be afraid to let them go. I know it is tough to do, but if someone is not open to standing with you, they need to become a smaller part of your life. I did this with two of my brothers.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
For me, 'Double Bagger's Ostomy Support Group' is a great support group, just to know that there are others out there that are dealing with the same situations. We may not have gotten there the same way, but we ended up in the same place.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
I believe that there is a SEVERE lack of knowledge about all ostomies. I have an AMAZING ostomy nurse that has been a godsend. Some Healthcare Professionals are severely lacking in knowledge about the care and effects, both physical and emotional, of having an ostomy, in particular, a urostomy.
- How do you feel we can raise awareness for urostomies within the general public?
I think that there should be more televised information. The shows like Dr Oz and other medical broadcasts should devote some time to discussing ostomates including diet, clothing, skin care, vitamins, exercise, etc. I am going to contact a talk show in Canada and ask if there can be an episode that talks about ostomates.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I go for a walk. I find that being outside is a HUGE help. Plus I have a devoted husband that makes me laugh, and a wonderful dog that motivates me!!!
Wow, thank you, Valerie, for sharing your story! You have been through so much but your positivity shines through. Good luck with the chat show!
Please tune in for next week we have the awesome Phil sharing his story!!