Posted , 6 users are following.
I was recently diagnosed with cauda equina syndrome and had surgery to relieve pressure. Now I'm in recover. I'm generally holding 80-180ml in my bladder and they want me under 100 or else they want to put a catheter in me. I feel this is a but aggressive and can do more harm than good. Just looking for second opinions. Thanks
0 likes, 14 replies
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jessica80560 justin1999
Posted
I was too hardheaded for a cath in the beginning and now I have no bladder function. Sometimes a cath can help remind your body what to do. Now Im 2 years later and have to start because Im pregnant so bearing down and coughing to pee won't work. I pray you receive full function and all your nerves wake up... Mine didn't...
justin1999 jessica80560
Posted
Did you have bladder function in the beginning? Mines reduced but I'm getting most of it out. Most of the nurses aswell say getting under 100ml is a pretty extreme volume to get to. And curious did you get back some of your nerves or did they all never wake up
justin1999
Posted
jessica80560 justin1999
Posted
I lost function before surgery and the doctors treated me like a pillhead and I didn't have my surgery in time. My doc said I was almost paralyzed! So when I woke up the pain was gone,but I couldn't feel much of anything. I have to make myself go to the bathroom so I can't just sit down and go and being a woman pushing isn't a good idea. I did get back feeling in most of my right foot and up the back of my leg but can't feel most of my left foot. .. Up the back of my left leg and parts of my but and my um... Lady parts are completely numb... U can pinch me on my butt and I wouldn't know... My sisters used to find that hilarious. Loll.... I've learned to live with it and try to maintain a normal sex life but its hard but I have an understanding partner so that helps
justin1999 jessica80560
Posted
Sorry to hear. I'm going to stay hopeful that I'll get most of my feeling and function back as I have a good chunk of it right now and I'm still am pretty young. But only time will tell. Thanks for input
jessica80560 justin1999
Posted
justin1999 jessica80560
Posted
olatokunbo justin1999
Posted
I have had CES fir 16yeaes now and I was in the habit of forcing the urine out until I damaged some part of my bladder and I have been on ISC since last year June which I find more conbibient than indwelling catheter.
justin1999 olatokunbo
Posted
Doesn't it feel weird or painful inserting your own catheter? At first at least and if it does, does it get any less. . . Weird
olatokunbo justin1999
Posted
Well it looks weird at the beginning but I'm so used to it and I believe it is a far better option than indwelling catheter or having to strain out urine which may further damage the bladder.
I do it 4 to 6 times daily using KY gel for easy insertion.
Proper hygiene is very vital.
justin1999 olatokunbo
Posted
Well I have my consultation with my surgeon in 2 weeks. I'm going to wait see how it goes and then make my decision. If it gets easier I'm not going to i don't think but if I still have to strain I may just get one
JP940 justin1999
Posted
I had surgery for CES at the start of 2016. To start with I had no bladder function and was catheterised. After three to four months I was put on Flip Flow to help me recover the sensation of wanting to pee (you turn a tap on when you get the sensation). This was successful and I then went on to self catheterisation to make sure that my bladder was emptying properly. Self catheterisation takes a little bit of getting used to but was only mildly uncomfortable. I was retaining anything from 70ml (which is nothing) up to 120 and very occasionally 180.
and was advised gradually to reduce the frequency of self-catheterisation - just making sure that the bladder was properly empty a couple of times a day rather than after every pee. Retention continued to reduce and after a couple of months I was told I could stop. All through these stages I had good advice and support from my Continence Adviser. My feeling is that you should definitely NOT have full cathetisation and if you are passing most of the urine normally you don't need a Flip Flow. I don't really think that retention in the 80 - 180 range is all that much of a problem but intermittent self-catheterisation could help you and your medical support to monitor the situation until things return to what the medics regard as normal. Hope this helps. (By the way how is your retention being measured and how frequently?)
natasha041190 justin1999
Posted
I was diagnosed at aged 22 in 2012. I went immediately from the indwelling catheter after surgery to ISC and have been doing that ever since. At first the whole process seems strange and daunting but its amazing how quickly it becomes second nature and part of normality. Also what i find convenient is to use the mini compact speedicaths which are easy to use and discreet in your handbag. Its all very daunting in the first couple of years after diagnosis buy things will settle. Hope this helps x
justin1999
Posted
Thanks all for the answers. I've been gaining more control over it so as of right now it looks as so I won't need one.