November is Bladder Health Month

[Karina Jeronimides]

Bladder issues is one of the worse symptoms of FA, along with dysarthria. It takes away one’s freedom of movement.  I thought the worse thing about FA was being wheelchair bound, but it’s not at all.   And the remedies out there for bladder issues just do not work for anyone who wants to live an independent life.  I would love to just have a catheter  [yes, i would LOVE to have a bag of pee attached to my body] so my days and activities are not so incredibly restricted – you cannot leave your house for long.  But catheters are made for those that have 24 hour assistance.  There is no way  someone with FA can take care of catheters on their own.  My friend tore her tube outside of her body more than once as  she was dressing and toileting.   She has had so many infections/UTIs.  I work, but cannot afford to hire nurses to come to my home or place of work 3 or 4  times per day to help  empty my catheter so i do not get infections. And i do not want to live in a nursing home. I have kids, a job, and friends.  How do we get doctors to work on temporary fixes that lets us stay independent a while longer?  it just infuriates me, that we are considered vegetables just because we use a power chair.

[Christina Cordaro]

Karina,

I am sorry that this symptom is affecting you and your daily activities of life.

It was getting in the way of my work as well. I asked my neurologist if there’s any remedy/medication to help alleviate this problem.

He prescribed me a small does of tolterodine. I take it at night so I don’t have the urgency to go at night when I am trying to sleep, and it lasts throughout morning and afternoon of my work day.

Maybe inquire about tolterodine to your doctor/neurologist!

[Karina Jeronimides]

Thank you Christina for the suggestion.  Jeff, let me tell you more about my investigations.

I’ve tried myrbetric- one dose per day then two as my urologist recommended.  Myrbetric really helped at first, but two doses caused blurred vision. Dr. Lynch, my neurologist, highly discouraged 2 doses of myrbetric.

My urologist then prescribed vesicare and one dose of myrbetric.  But vesicare, unlike myrbetric which supposedly  only targets the bladder, affects the entire nervous system.  And that means that I suffered many side affects like: constipation, acid reflux, headaches, depression, sleep disturbances.

I then started taking laxatives galore and my issue was reduced.   But the constipation suddenly got worse and became impossible. My primary told me to  stop taking the vesicare as I sufffered from   too many of its side effects.  But the vesicare really worked and going to the bathroom every 30-45 minutes was not sustainable.

So I went back to my urololgist who suggested I get a botox injection.  The urologist was terrified that I would retain urine and have to be cathetherized, so she injected a minimal dose of botox in my bladder.  The procedure is an endoscopic surgery, and it’s done in the doctor’s office, so it’s not at all traumatizing.  It’s actually quite cool as you get to see the inside of your bladder!

I had to wait 3 months to be able to stop taking the vesicare because the botox injections were so low. (But imagine needing to go to the bathroom every 30 minutes while teaching — all eyes are on you!)  Oh, before the botox injection, I had to undergo a most humiliating test where my bladder was tested.  Humiliating because I’m a woman and 2 male medical students had to help me on the machine [i had no underpants], and watched me as I emptied my bladder.

The botox worked, but only for 4 months, and now i am back on the vesicare, even though in September i had another botox injection.

This time around the vesicare has not only caused more issues with constipation but also really painful bladder spasms.

I will bring up Christina’s medication with my urologist.  But I think I’m just too old, and incredibly sensitive to medication. Do go see a urologist and get botox earlier on than i did, as it will work better.  Taking drugs for too long is just not great for anyone.

Best of luck.

[Jeff Burress]

Karina & Christina,

Thanks for providing this information. I have experienced the same problem over the last few years and thought it was something else causing this not related to Friedreich’s Ataxia. I have looked for answers as well to help with this condition.

[Tina-D]

I second Jeff’s reply.  And Karina’s story sounds like mine.

[Victoria]

I’ve been on amitriptyline for about 6 years each time my GP puts the dose up my urgency lessons but the past few months it’s gotten so much worse just during the day time, I have never really had I to go at night we’ll when I was pregnant i did, but anyway my husband has been putting towels folded up to sit on. It’s pretty embarrassing I feel like a dang puppy…