Question:Photo #4

Hi “Trudy, 

 I’m starting to urinate on my own after 5 months of a neurogenic bladder.  Mine was caused by a viral infection of my brain and spinal cord. My diagnoses were Acute Disemminated Encyphalomyelitis and Transverse Myelitis AND Meningitis.  A pretty big attack to survive of my nervous system.  I’m happy to share that I am no longer partially paralyzed and even was able to ski in my yard recently!  Here’s my question.  My Urologist, while nice and had great credentials, is really not much help.  I asked her if there is any information online about what it’s like when a neurogenic bladder starts to heal and she said no.  Nothing on line because no one knows and if there is anything, it’s probably wrong.  I asked her what I should be doing, as I’m still cathing and retaining, and she told me, each time I get the urge, I should urinate and then cath the rest out, not retain and then try again in 10 minutes.  She was surprised that I hadn’t been given a “hat,” to measure and told me to come get one at her office.  what I really want to know, is what can I expect now that my bladder and nerves are really healing?  The doctor also told me to make sure I’m not peeing more than 500 at a time.  And, I need to keep cathing until I’m only getting 50 or less out.  She said if it’ doesn’t heal to that point in 2 years, it probably won’t.  Of course, I’m ahead of schedule with my healing.  My prognosis for a full recovery is 6 months to a year or longer.

Thank you!!

Trudy’s answer:

Thank you for your question.  I am sorry for your loss and at the same time let me welcome you to our club.  We have a condition that is hard to talk about, and people feel free to make jokes about, so luckily we have found each other. Together we can educate.

The sole purpose of this blog is to offer emotional support for the loss of bladder and bowel function.  I am not a medical professional so some of your questions I cannot answer because I do not have that kind of knowledge or expertise.  I just know what I have gone through myself and what some of the readers of this blog and my book Beyond Embarrassment have shared with me.

For myself I was told by my urologist that there was a chance my function would come back, but it never did.  Unlike you, I cannot pinpoint the cause or time my unfortunate event.

I started this blog because like you, I was so hungry for answers.  I searched for comments to give me comfort, and I wanted to converse with others.

There are many levels to nerve damage.  Some of us need to watch the clock and cath on a schedule, so we do not allow the urine back up and stretch or ureters. This can  cause problems with our kidneys.  That is probably why your urologist wants you to measure your urine output.  I feel full only when I am dangerously full.

As far as healing and the possibility that you will regain your ability to urinate on your own, time will tell, just like your urologist has said.  It is also possible that over time your bladder will stretch like a over tight balloon. Did she mention that your bowel can be affected by this as well?  For some reason the urologist I went to, in the beginning, did not tell me this. For years I struggled with an underactive bowel, not understanding that it was a permanent condition for me.  If I went for long hikes, I would have an accident because I did not understand that my sluggish bowel would build up in my gut, and by exercise it was finally allowed to expel. Now I understand that if I exercise and eat raw vegies and fruits, I am safe if I have a BM in the morning before I start my day.  Pay attention to this, because often when the bladder nerves are affected, so is your bowel.

I think a big part of your question is the plea for medical professionals to write more for us so we can learn more about our condition.  Unfortunately we have a condition that is not a casual conversation. Writing a letter to Aunt Betty and to tell her about my  bowel and bladder function is just not done.

If you are a medical professional please write to us.

Some suggested topics are:

1. Does bladder and bowel function come back when the ability to walk comes back or are they separate?  Are there statistics?  What are our chances for  FULL RECOVERY.?

2. Are there hospital support groups being considered for those with inadequate bowel and bladder function?  Where do patients  go to have my very personal questions answered?

3. Is there anything we can do to get our damaged nerves back?

4. What are the best products to use?  Please write more about the different types of PRODUCTS, catheters, diapers, swimmers, pads that we can use. We as consumers want choices.

Readers, do you have something to add to this?