Loss of bladder control? Any feedback?

[clean_in_ks]

Hi guys, I'm a MH forum member, but haven't ever posted in this community before.  My older sis (my best friend) has relapsing/remitting MS and has really been doing pretty well these past few years.  She called me last night and told me she has just now majorly progressed with "loss of bladder control".  She was able to wear the thin poise pads for years and now has progressed to the much bigger, more protective pads.  But she is not able to control herself at all just within the last few days.  It's much more of a daily, can't function this way, kind of a problem for her now.

Her neurologist has had her on diff meds for her bladder issues; then took her completely off of them because she was retaining too much in her bladder; she has tried keeping it empty by catheterization daily; stopped doing that; (this was about 4 yrs ago) and then she maintained ok after that for quite some time.  Now, she has no control at all.

She knows her "researcher hat" sister (me...lol) very well....and feels like she can talk to me about anything so called in desperation last night to see if I could learn of anything that might help.

Some history.....in the last year or so....lots more frequent UTI's.....but still able to live comfortably thru the day without too many accidents.  The accidents are non-stop at the moment she says.

I don't know if it is the scar tissue in the brain cutting off the electrical signal to the bladder?  Do you have any options?  Have any of you dealt with this?

She would get on the forum herself, but it unable to....so I told her I'd come ask you guys.  

If you have any suggestions or experience to share at all......we'd both love ya for it~
Blessings,
Connie

[weeblzwobblz]

I'm sorry about your sister's bladder issues.

I've tried all the medications and didn't get any relief for my loss of bladder control.  Last year, I had an InterStim Implant.  It has helped the loss of bladder control but I still have some issues.  If I had to make the choice again, I'd still choose the InterStim.  The loss of control is horrible.  I still have to wear depends because I still have issues.  Just not the horrible, all of a sudden urge with loss of control.  Hope this helps

[clean_in_ks]

You ALL are just great!!!  Thank you, thank you for responding to me.

I SO appreciate the botox thread, Lulu..!!  I'm really happy for you and had NO IDEA about this.  And Candy, your offer to me is much appreciated...bless you~

I found out (after my sis called stressin) that she DID, in fact, have a UTI and that was the reason for the "sudden change" in her urinary flow.  She went years w/o a UTI, but has been getting them more and more frequently this past year.

You're a great bunch of heroes in my eyes.  My dad had ALS and my best friend big sis whom I referenced in my OP was diagnosed in 1971, went into remission pretty much until the late 1980's.  Her symptoms and progression have markedly increased the last few years....but she can STILL do what many cannot.  She's a TROOPER and I'm so proud of her and her attitude!

I made her this framed "picture saying" for her birthday one year that says, " EVEN IF YOUR BRAIN FAILS YOU, YOUR BEAUTIFUL HEART NEVER WILL."
Some family members thought it was "in poor taste" to give her that.....but my sis appreciated it because she knows that I know what is happening in her brain and how she grieves what she can no longer do.  We were arch enemies in high school.....and after that.....best, best buddies for life.  How cool is that?  lol

Lulu, I read your Dr. Suess MS Poem in your photos....and I cried....

....because of many medical issues in my own life these past 5 yrs, I am now learning to live my life in pain....without pain pills.  I became addicted to them during my "medical tomb" years being bedridden for so long..so they are no longer an option for me.

When my sis asks me how I am....and when I become willing to really share the reality of my daily pain levels and struggles (cause I don't like to cause her to worry)...she says, "Oh, I'm SO sorry...... I'm glad there's nothing wrong with me...I just have MS!"....hahaha!
We give each other hope, laughter and love....what more can we do~

Blessings to you all~
Connie    

[candy158]

Hi Connie, welcome to the forum.  

Well, I have bladder control problems, and was dx'd with it just before Easter last year.  I was told that I would have to use a catheter from now on.  I was told that when the brain and bladder disconnect, it does not usually re-connect  according to my urologist.

I had some UTI's for sure, just finished a 2 week course of Cipro , and now 1 week later, I have been waiting for the new results of my new infection, that we have to fight before my surgery on Tues.

I am going to look into the Botox, and see if that might help me.    

Any questions you have, feel free to PM me, and I would be happy to chat with you further.... ok???

((HUGS))
Candy

[PastorDan]

Thanks, Laura.  (Now why didn't I think of that?  Oh, that's right.  Cog fog.  Among other things.)

[Lulu54]

here's the link in case it moves off the front page quickly-

http://www.medhelp.org/posts/Multiple-Sclerosis/Botox--My-Wrinkle-Free-Bladder/show/1985312

[Lulu54]

I just wrote about BOTOX for the MS bladder -  I had it done a couple weeks ago and it has been life altering.  Iwould encourage her to talk to the doctor for a referral and give it a try.

I'll go look for that one and bump it up so you can read it...
Laura

[PastorDan]

It kust occurred to me that I've been seeing countless TV ads for "bladdeer.control products" lately.  (I remember asking Nancy what she thought it might feel like to have "Personal Incontinence Consultant" on one's business card; that's who they said we'd be connected with!)

Would any of that information be useful?  I've no idea, but was hust hit with that thought tonight.  Best wishes!

[Corriel]

Hi Colleen, I am afraid that I have nothing of value to offer here but I will check with Candy because I think she could help.

My thoughts are with you and your sister. She is very fortunate to have you!
Corrie

[PastorDan]

I'm with Kyle.  Sorry.  Ladies?  (Maybe you'd rather PM this topic?  Seems worthy of group discussion IMHO, even if a bit uncomfortable.)

[clean_in_ks]

Thank you for responding, Kyle.  We've tried different meds; a timer to "regulate" emptying the bladder; a short span of intentional catheter release....just looking for more ideas.

The timer doesn't work as she forgets to re-set it....or when it goes off, because it's such a hassle to get to the bathroom...she blows it off and then forgets to go.

I did get a PM from a member of this community with a suggestion...that was nice~

Thanks again for your response, Kyle~

  

[kwarendorf]

I have only minimal experience with bladder control issues. During a recent UTI i had my first episode. I would progress from not need to urinate to having to go very badly to not being able to keep the tap closed in very rapid order.

I treated the UTI successfully and the further I get from the UTI the better my bladder control has become. If not associated with a UTI I'm not sure what remedies are available.

My day to day bladder issues tend to be in the other direction. It is often difficult for me to start the process ans more often than not I do not empty my bladder completely. It's the latter that likely lead to my UTI.

Perhaps others will chime in.

Kyle

[clean_in_ks]

Guess not.......