Molly,

Please see a neurologist ASAP. You need to be evaluated to make sure this problem is not the result of a spinal disc nerve compression problem. I have battled the B & B control issues for the last four years, and unfortunately, my problems are the result of herniated discs and a put off back surgery. Also, as someone already mentioned, medications do add insult to injury when it comes to B & B control. It took me a month or so to identify the specific meds, but I slowly weened off of each individual medication I was taking until I found a couple of culprits that I no longer take. I will not mention the medications by name because we all react to medications individually, and according to our overall medicine interactions. I think you would be better off to determine for yourself what, if any medication(s) make your B & B problems worse.

My neuro also had me go to see my urologist to rule out urinary problems. After all kinds of testing no urinary problems were identified, yet I was having major control problems. Only then did we know for sure the problem was not urinary in nature.

Feel free to PM me for more direct discussion.

Best regards,

EJ

By the way...the back surgery is what unfortunately, led to my RSD!

EJ

Hey Mollsy,

are you ok or is it S? (you know what I mean).

I'm sorry you are having such rubbish problems at the moment. Well. With me I have issues with both but obviously not to your extents...

bowel - constipation and diaroheea but that's probaly meds - I think it's associated with the sickness as well and the pain. Sudden urges to go. Not helped by back spasms! Incredibly painful. Issues with sensation.

bladder - can't empty it fully because of the dystonia. Burning when peeing, hesitancy etc. Issues with sensation

*nb I have dystonia so my muscles don't respond to me.. so spasms can be.. embarrasing*

I use a pee wee (I can't transfer to the toilet without hoist/ rugby players and this thing means you can pee sitting down in an inconspicuous way - very intelligent design! and if you get a sudden urge to go it's much easier). I watch my diet and fluid intake. You can pretty much work it out - mum tried to get me on a similar regime to those used with people with SCI injuries where you have to know what you have taken when and how long until you will need the bathroom.

Is there a specific time it occurs?

How heavy is the incontinence? there are several options. Depending on the cause (see the neurologist!!! and urologist!!!) you could have meds, surgery, catheterisation like with a leg bag, bladder training, use small pads, large pads, specialist underwear, stress/ diet/ fluid management or a mix of all. One lady I know with it chooses to wear long skirts rather than trousers and ensures she goes to the bathroom 2 hourly.

Don't feel embarrassed to discuss it... it's a topic that is embarrassing but... realistic unfortunatly.

On another note, I have large "changing pads" (like the ones you have if you are on a bed pan in hospital) that I sleep on when I am on my period - most embarrasing thing in my life trying to explain to Ben and some of the boys (who had gone through my room) why I had large incontinence mats!! LOL

Oh, can you feel it happening?

Love ya hunny

xxxxxxxxxxxxx

hi molly,
i had the bladder problem a few months ago and it was from the trazadone i was on. i do not know what meds you are taking, but since our meds often 'numb' our sensation, we can lose the sensation telling us that we 'need to go'. i had been on the trazadone for a while too so it may not be a new med. hope this helps.
fondly, joan

Hi Molly,
I also have been having bladder problems. Sometimes I can't seem to go and then other times I just about make it. I was so embarresed the other day. I didn't make it. I thought it may be age. But now that you mentioned it I think I'll talk to my Doc on the next visit.

Sue K.

Hi Frogga - its S - new bad things happening all at once, including loss of sensation in legs as well. Very very scary time, hating all this, I'm feeling world's most useless carer, she feels world's biggest burden as she is starting to need wheelchair also.
And, to top it all off, both of us now are too disabled to work full-time any more.

Oh Mollsy..

That really really sucks!!! It will sort itself out - it always does! I told S to look forward to coming over to europe as something to aim for - are you coming too?? It would be great to meet you both.

I'm sorry there is nothing I can do to make things better but if you need suggestions or anything like that then feel free to pick my brain!!

I can't believe how work are treating you both! They are so out of order! It sounds like working for them is making you +S much much worse...!!

Oh - with carers/ carees... I always feel a dumb idiotic burden whilst most of my carers are bemused and perplexed and out of their depth.. Dunno if this helps but we take the p*** out of each other all the time, I learn to say what I want as simply as possible and try very hard not to either nag or order someone to do something in a particular way. Although I am not a routine person I have a vague routine which means that my new carers can start to know what needs doing and when otherwise you end up dressed by 3pm and eating lunch at 10!! I find it's the stupid little things that take the time - getting dressed takes forever etc..........

This has probaly been no help at all.. I am really sorry over the work thing.. BUT make S get a bright pink wheelchair...

Love ya and hope things improve

Froggsy xxxxxxxxx