Welcome to another #UroStories and today we have the very positive and inspiring Matt Elkins who is 42 from Ohio talking about his story.
Take it away Matt...
- Can you tell me a little about how you got your urostomy?
Well, like you, I actually have two ostomies. I was born with a congenital birth defect known as bladder exstrophy. Bladder exstrophy is where a person's bladder develops outside of their body while they are in the womb. Additionally, the type of exstrophy I had also resulted in a portion of my digestive tract developing outside of my abdomen. Exstrophy requires many, many corrective surgeries that span over years as a child. I couldn't begin to guess how many surgeries I've had. I'm sure 50 would be a concentrative number.
Anyway, at birth, I was given a colostomy, which was later revised into an ileostomy, and at age 7 I was given a neobladder-type urinary diversion that did not require a urostomy bag. That neobladder urinary diversion worked well for me for nearly 30 years, but at 37 years old that diversion failed and I chose to go with the urostomy. I chose the urostomy over several other choices for my urinary diversion due to my life-long familiarity with my ileostomy (I simply knew I would get along fine with it) and the other alternatives would have required me to catheterize through a stoma on a routine schedule, which I didn't want to do given my lifestyle, hobbies and occupation. Further, the urostomy nearly eliminates the risk of hydronephrosis, which was an issue I had been dealing with under my previous diversion, and it would have been a risk if I had gone with any of the other options I was given. Unfortunately, I was living on borrowed time with my original urinary diversion, and the urostomy surgery was just one more operation I knew I had to buckle down and get through. Fortunately, I've had great results!
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
That's a good question and one that I will come from a particularly different viewpoint than a lot of others. For me, I have always had a stoma of one kind or another, I've always worn an ostomy bag, and I've always had some form of a urinary diversion. For me, living with an ostomy is really all I know. Compared to my previous urinary diversion, the urostomy is actually a little easier to manage and I think it poses less risk to my kidneys. So, from a day-to-day management standpoint, I really don't think that it is all that difficult.
What I think was the most difficult, was dating with an ostomy and opening up to someone. To overcome that, I just needed to be selective and choose the right person. My wife loves me unconditionally. I know I found a keeper!
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Stay positive about it. Don't be concerned that this surgery will inhibit you in any way or that it will be a major change in your lifestyle. This surgery will likely save your life and the daily management of the urostomy really isn't that big of a deal when you get a routine down.
Tips... Try out as many different appliances (bags) as you can until you find one that works with your body. Not all urostomy bags will work with your body, and you cannot get discouraged when it just doesn't work. Try something different. Convex styles, different tape or adhesive, no paste, use powder, etc.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I've joined several online support groups for exstrophy and urostomies. I joined them to research my urinary diversion options when I was facing surgery. Prior to that, I really did not participate in support groups. I managed very well, and I felt that I probably didn't have much to offer others since my type of diversion really wasn't used anymore. After joining a few groups, I found there were many, many questions I could answer for people, and I could ease a lot of people's fears about what to expect as they go down their own journey. Now, I try to participate in those groups as much as time allows.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Absolutely. In my life, I've rarely used a nurse who specializes in ostomies, but when you find a good ostomy nurse they can really help with little tricks in management and care. Typical nurses just do not have that level of training. The overall health care field, in my experience, tends to refer me back to my urology specialist when confronted with questions or concerns about my urostomy. Most of the time that is because they just don't have the level of experience, training or familiarity with a urostomy to give me the care I need. I have always sought out doctors highly trained and experienced in the type of care I need for this very reason.
- How do you feel we can raise awareness for urostomies within the general public?
Articles such as this one are a great way to reach out to the general public through social media. I commend you for starting this platform to share our stories. Otherwise, I'd like to see someone find a way to show ostomies in a positive light, as a life-saving option, to those faced with difficult health challenges. That may mean presenting awareness in almost a cross-promotional manner while raising awareness for more conventional and general illnesses, such as cancer awareness.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I'm an avid outdoorsman. I enjoy fishing and hunting. When I need to hit the reset button, depending on the season, I will immerse myself in one of those hobbies. I'm actually a very competitive tournament fisherman, so it is very easy for me to get back into a good place by simply organizing my tackle or preparing my boat for the next tournament. I suggest everyone should have such a passion for their hobby that it takes them away from the negativity we all experience in our daily lives.
Thank you, Matt, for answering so honestly! Your positivity is infectious and I can feel your zest for life through your answers! It is great reading the different reasons as to why some people have urostomies. Good luck with your next tournament!
Next week we have Dani Mercer joining us so please tune in next Monday!