Trudy Triumph's Neurogenic Bladder Blog

Coping Strategies for Neurogenic bladder

Beach book

Having coping strategies in place is more than important and necessary for a healthy productive life. Our goal is to go out and live our lives. Often pain is involved, concerns for possible embarrassment if we have an accident, and a factor of feeling isolated because we have a great fear of others discovering that we have toileting issues. Often we have bladder infections that render us helpless until we get what we need. Our goal is to live life to the fullest. Here are some coping strategies that help me.

  1. A good doctor is key. Before I found the urologist I have now, I thought I was going crazy.
    When you select an urologist, ask if they’ve developed a “system” for their patients with bladder infection problems. We don’t plan on getting infections on weekends and holidays but let’s face it, we just do. If the urologist you have now does not test your urine every time you have an infection, why don’t they? I am “home” to bacterial strains that have become resistant to a certain antibiotic. If my urologist did not take the time to test my urine and culture the bacteria in it, I would never know. If you get the same antibiotic all the time, why? We need proactive doctors, not lazy ones. Some antibiotics that are used to treat bladder infections are hard on other parts of your body. Are you doing your research to know what they are?
  2. Supportive family and friends are good to have. I value my husband so much! Before my diagnosis we went to remote areas to do medical missions. That part of our life is over because of my issues. He is understanding and can easily go without me for a short time. I get no pressure from him to do something I am simply unable to do.
  3. People to be authentic with. Let’s face it. Our friends and family know we have these
    medical issues but enough can be enough, in getting too graphic with them. They cannot feel our isolation and pain and quite frankly on many levels it might make them uncomfortable. I have a group on Facebook that you might like to check out. It is called Neurogenic Bladder/Bowel and Incontinence. An urologist started the group, so he does a great job keeping us on track. It is a place where we can let it all hang out and there is no fear of making someone uncomfortable. Another place I have found to be real is a website called Team Inspire. I am in the bladder support group. Again, hand-picking your audience is important. Sometimes we might get too comfortable talking about bladder and bowel issues because we live it every day. We need to be sensitive to others who don’t.
  4. Having devices on hand when you need them is lifesaving. I keep my catheters in the glove compartment in my car and in a pouch I wear around my waist. I don’t use a
    purse too much anymore, so I know I will always have what I need. I also have a plan for getting devices if I run out of them. It is too bad they are not sold in drug stores; that would be perfect. My plan is to go to the nearest hospital to get what I need, in case of an emergency.
  5. I know that the diagnosis can be shocking and disappointing. We have nerve damage that is irreversible. I know for myself I just need to get over it. A pity party has no place in a productive life. Others around us will take their cues as to our current attitude, regarding our illness. If we stay positive, others will be positive. Trust me, it is not fun to hang out with a sourpuss. We need to stay upbeat and positive.
  6. I keep a change of clothes at work. I have not needed them, thank goodness, but they are there in case of an emergency.
  7. Regular times for eating and toileting are important to me. Since I have a neurogenic bladder and bowel I do not receive the normal queues or signals. If I do not pay attention to the clock I get into trouble. My advice for my kindred spirits is to get a job at a school. I cannot believe how helpful the school year is. I have it made in the shade. I go to school and between second and third period I slip into the nurse’s office to use the restroom. I do not even need to check the clock since I have my own reminder bell. Then at the same time each day, I have “first-lunch”. After fifth period I duck into the nurse’s office again. This regular eating and toileting keeps me comfortable and out of trouble at least during the work week.
  8. Time off from the school with a less rigid schedule often throws me for a loop. I can’t count the number of times I have had stomach aches and finally remembered to pee. I just love to shop. I can get so preoccupied with the hunt that I just zone out and ignore my warning signs and not make it to the toilet in time. Then I need to just go home for a shower. In many ways summertime is supposed to be spontaneous and free. I just have a body that misbehaves. It is kind of like caring for a child. As a young mother oftentimes I ate when I fed the kids and told them to go to the bathroom because it was time. They needed a regular schedule just as I do now.  I know of course, how to solve this quandary: GET AN ALARM CLOCK or a phone app. set-up with a reminder.

These are some of my secrets to sanity to help me get out to live my life.  What are some of your favorite coping mechanisms?

2 Responses to “Coping Strategies for Neurogenic bladder”

  1. Reply stephen taubert

    self cathing since 2012, subdural hematoma, nueogenic blader, on comadin, any chance interstim will work

    • Reply Trudy Triumph

      I have been offered the same opportunity from two urologists. It could work of course and if you decide to go ahead please let us know how it goes. For myself I have decided to forgo. The procedure is still in its infancy. I am in a lot of support groups on line and it seems the leads will migrate and not stay put after a while. Another problem is that the simulator takes on life of it’s own and causes problems. At least that is what some write in about.

      The patients that have tried are carving a path for the rest of us, I think. They are brave and I hope that someday the procedure will get better. I might try myself someday. I get chronic bladder infections. Sometimes I wonder how long I can sustain this life we share.

      Best wishes to you. Trudy

Leave a Comment