Here's an unpleasant topic/ question ... as RSD advances, into organs and/or spine ... has anyone else started to experience regular loss of bladder and/or bowel control?

how do you deal with this?! are there any drugs? emotional tips? fashion advice? this just started happening at the same time that complete loss of sensation in legs is appearing

have i mentioned i hate rsd...

*** Advice and support wanted! ***

Molly,

I am sorry to hear you are having bowel and bladder problems but since you are having numbness in your legs I would tend to believe that your B and B problems are from the very same numbness. Your inability to feel your legs could be from the same nerves that are causing your incontinence.

You may want to try Depends or some other product in that group.

You shouldn't be embarrassed to ask questions about anything having to do with RSD.

My nursing degree is telling me to tell you to get your numbness checked out by a neuro or at least your PM doc if you trust him/her.

I hope I was some help.

I have no experience with it and not even really any advice I can think of, but just wanted to give you

More Hugs,

Karen

Hi there,

I agree with Barb, the numbness is often an indication of another nerve problem not necessarily related to RSD. I think a neurologist referral is the first thing I would want.
Apart from that we do often have incontinence problems cause by many of the drugs that we take due to our RSD.
Unfortunately this can be an unavoidable problem with the type of drugs we need.
I have what is called an atonic bladder and whilst I am not at the moment, I have had to be catherterised for months at a time. This occured at a time when I was having many surgeries so I was up to my eyeballs in very strong opiates etc.
Wishing you luck but hopefully it is a problem not related to your rsd and therefore you will be able to get help for it.
Bye for now
Tayla

I am sorry to hear of your problems!

I recently just went to my doc with bowel problems. Severe cramping, having to sit on the pot most of the day. The doc doesn't know much about RSD, so he doesn't know if it is involved. He is treating me as if I have irritable bowel sydrome and gave me Dicetel.

Just before my bowel problems, I got severe sweating...so, I think it is all RSD related.

All this has happened just in the last 3 weeks. I started getting really bad cramping after every time I ate. Weird....oh...so far the Diceltel is working after only one full day of taking it! Just had a few little cramps and I didn't have to visit the bathroom!

Take good care!

Hippy

Along with seeing a Neurologist I would also see a Urologist if you aren't already.

I deal with the IBS and Gastritis. Those I think come from having part of my intestines removed. I'm opposite of you on the other part. I deal with constipation.

I have Interstital Cystitis and I go too many times along with pain.

I will say they do have some good treatments out to help people with bladder problems also so once you get to the Neurologist and it's not connected to the numbness in your legs then think about seeing the Urologist.

Ada

Molly

I am so very sorry to hear this
I certainly wish I could make it all go away - barring that I agree with some of the other posters- don't just take it for granted that this is a necessary evil of RSD.
Have yourself checked out for bowel problems- gastro- intestinal issues ; other neurological issues. I would definitely start with the numbing in the legs!!!
One thing , one issue at a time all of this does not seem so overwhelming so please just go on a bowel mission ..for now ...the rest will come in its time

Look how great Hippy is doing with the dicetel.You will find your way too.
just breathe deep and make a plan

Please be good to you and see if you can get this under control

One less problem is always good even if we do still have RSD to contend with !!!!!!!!!

Much peace and luck

GnP

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

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