University and incontinence!

Hello everyone!

Through a spinal injury whilst playing rugby last summer, I have recently become incontinent during the day and night.
Following extensive tests and scans the hospital and continence team have established that nerve damage is responsible for this problem and the only means for my to cope is through the use of a catheter or by wearing special incontinence pads.

I tried the catheter for a few days and it resulting in me returning to hospital with an infection, so at present I am having to wear and use pads.
I'm not going to sugarcoat the issue, but the hospital are supplying me with pads which essentially resemble large baby nappies/pullups but they're the only thing which seem to be able to handle the accidents I have. They're not very discreet and my anxiety has gone through the roof because of this. I've never felt so low and I'm really struggling to cope without isolating myself and becoming slightly reclusive.

As a 23 year old male with a huge group of uni friends, it's made me extremely conscious and aware of my condition and naturally I want to keep this as low key as possible.
My girlfriend and family are brilliantly supportive, however as none of them have ever had to suffer such an issue, their empathy can sometimes lack.

Has anybody else found themselves or known of anybody in a similar position- I'm purely trying to find a way of coping and managing this issue as effectively as possible without it having an adverse effect on the rest of my life.

:s-smilie:

Reply 1

graceelizabeth92

I had a friend that had a similar sort of injury and he wore a catheter for a few months and also tried the pads. We were at school then and I know that he felt really self-conscious, but thankfully only a few people really noticed and kept it confidential. I feel for you - it must be really tough, especially when you're at uni!

There's only a couple of things I can think of, I'm afraid. Firstly, do the pads show at all through the clothes? Would you be able to wear slightly looser fitting trousers so that that it isn't obvious? That might make you feel a bit more confident. Secondly, have you told your tutors about this privately? It might make you feel better if they know what's going on - if nothing else they will understand your anxiety, and if you struggle with your work as a result at some point down the line they will be more able to relate to your situation (I know this because I had a really really bad anxiety disorder in my 2nd year). You could also try seeing a counsellor at the student health clinic?

Finally, is the condition permanent? My friend had an operation 18m after his accident so he didn't have the problem anymore - is this possible for you?

Stay strong though, it must make you feel quite insecure but you're doing so well to be carrying on through uni (I knew people who left for stupid little things like not being able to do their washing, let alone having a serious injury!).

Reply 2

InArduisFouette

as the OP is a chap there is one option for a urinary incontinence which avoids the infection risk of an catheter and avoids the bulk of pads - a 'sheath' / conveen / 'condom catheter' - although you would still have a leg bag as you can't put a valve on a conveen like you can with an indwelling catheter ( whether urethral or suprapubic - but that is a rather drastic step )

are you under the care of the relevant Regional spinal injuries service or just local ortho and urology ?

pads are not really the best option for the OP and are rarely used in in the Spinal injuries centres ( as faecal incontinence following SCI generally indicates a poor management regime )

Reply 3

annoyedstudent

The OP has stated that they've ran scans and tests and determined nerve damage as a result of the spinal injury he sustained. Believe me, incontinence is horrible to deal with, I have it too, only the doctors and urologists can't determine the cause. They seem to bat it away like I was crazy. I have to use 3 pads when I say pads they're the same as the OP because of the volume of urine loss involuntary, they are adult sized nappies. At night if I forget to wear them or change, it leads to leakage in bed. I can relate to it being difficult to cope at uni, I start in September of this year studying Computer Science. I was allocated a single room, no en-suite because I was too embarrassed to put anything in the disability section on the accommodation application form. I finally come clean about it by sending evidence in form of doctors' letters and referral letters, they were really great about it and reallocated me a single en-suite room. I'm sitting here 4 weeks before going to uni about what sort of experience I'm going to have, I like to go out and drink and have a good night out, but it bites me on the butt in the form of a soaked pad in the morning and even sometimes it leaks from the volume. I sympathise and empathise on how you feel about it. I have heard about Sacral Neuromodulation helping in sending signals through the sacral nerves, but whether that is possible with your nerve damage is another question.

I have been to some very questionable doctors with varying theories, one tried telling me it was anxiety and I got put on Haloperidol for psychosis and I was very angry about this. My neurologist was shocked when I said I was on Haloperidol, he mentioned it was for psychotic conditions not anxiety and I thought "Ugh great". After an examination and strength tests he sent me away promising an MRI of the spine and head which came swiftly on, came back normal. By now I was dejected, still using pads with no answers, I went to my local "urologist" and I used inverted commas because he doesn't specialise in the waterworks and specialises instead in stones and he sent us away to another hospital to do urodynamics which showed no signal from the muscle to contract therefore when they loosened the catheter, the saline ran out and had to be caught, my cheeks burned red at this, the nurses comforted me as best they could as they cleaned me up. Fast forward five weeks I was told that I wasn't emptying that good and it could lead to kidney failure which scared me a little, I asked for a second opinion privately which he obliged. I saw the next doctor who read the notes and basically verbally crossed them out to me, he examined me and said he needed some more tests which came negative and now waiting for my next appointment in September three days before I go to uni to do something about it. I sit here right now covered up from the rest of my family to hide this ailment while typing this, have comfort in knowing you aren't alone.