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struggling with ISC due to bad arm/ shoulder

hi everyone…just wanted to see if anyone could advise…I am struggling to do my intermittent self catheterisation…from the stoma at my belly button…you do need two hands and at moment my arm and shoulder are really bad…pain, weakness and very limited use …tendonitis has flared up again and they think I have rotaor cuff dysfunction due to uncontrolled movements of shoulder blade plus now a prob with collar bone…I don’t want an I dwelling catheter in the usual place and although I can put one through the stoma and tape it with a valve on the end…my fingers are not working well enough to open the valve as you need to pull it outwards to open it…and again you need two hands to do this…my gp couldn’t advise…and I need to do isc 6 timesa day and at present only managing 3 at best…maybe call the advisory nurse? also if I have to havean op on my shoulder…three week post op my arm will be in a sling…and have no idea how I will deal with things then…I need to havea plan in place for that…!!! any advise would be great…I have done isc for many yrs but am facing some practical issues now… em x

Hiya

I found myself in a similar situation -different problem but the issue was the same-due to co-ordination, and weakness I was struggling to carry out my own procedure.

The nurses from my surgery are on standby and will attend when I need them to. I am aware that this may not be the same for every GP practise,unfortunately.

Hope you find a solution that suits you.

Ellie x

thanks Hun,.glad to know am not alone in this…I just can’t get my fingers to do what I need them too and have little strength…have called the nurse at the place who supplies my catheters so hopefully she will call me back to advise…!! thanks em

Hiya

You are def not alone! And good that you are planning ahead instead of last minute panicking!

If the nurse that supplies catheters cannot help then maybe nurses at surgery can? I am assuming they are different nurses-but perhaps not?

Ellie x

thAnks… Ellie yes getting to the stage where I need some help and for one so independent that’s not easy…yes not the same nurses as at gp but let’s hope they can havea chat to them on my behalf and come up with a plan…I really don’t like last minute panics…lol so ideally need a solution now …will make things easier too if I do have to havean op on shoulder…which is looking very likely… em

Hiya again

You sound similar to me! However, let me share something my GP said to me…Theres a fine line between independence and stupidity, please dont cross it again. Hes right. Asking for help doesnt make you weak-far from it-it enables you (and me!) to continue living our life, with us making the choices.

Ellie x

l can sympathise - l had to have ‘rotor cuff repair op’ about 6yrs ago. Yes, you are in a sling for sometime - and to be honest the pain afterwards was far worse then pre-op. lt took a lot of physio and time before l could say l was glad to have it done. l have a SPC - had it for about 18yrs. l had no problem managing it after the op - which was on my right shoulder and l am right handed. l use a short female length cath - and direct valve drainage bag - so no tubing to get ‘kinked’ -lts all neat and tidy and fits nicely inside tight jeans. Virtually undetectable. Although your arm/shoulder is in a sling - you can still use your hand.

F.

heya…thanks Ellie…just got back from gp and happened to time it right as continuance nurse was there although she hada full. logic she is going to get one of her college use to see me…but alas diary if full till 29 th August, but she will try and see me sooner…just no slots before then.great! certainly think they can help me just not right now…but it’s better than nothing…but yes Ellie there’s independence and there’s stupidity…as you say it’s hard to know when to put your hand up and ask for help…but I have and although hard I really don’t want to make things any harder for me but not asking… thanks campion…much appreciated…using my wheelie is. now pretty much impossible and am using my good arm to get around inside…and my power trike for outside… go has refered to wheelchair services. ut your guess is as good as mine how long it will take for an asses…have tendonitis in same arm shoulder, winged scapular…and suspect collar bone has slipped also for some reason…it’s all going on and I hate it…lol ok cool fe the set up you had post op…sounds like it was good…gosh…is it really worse after op? it’s pretty bad for me now…eek…really wanted to avoid surgery…but will see what orthos say tomorrow…all this came on within 3 weeks of having ON so have had that to deal with aslwell…still getting over that!! non idea if they are linked…no ones looked into that as yet…waiting for neuro review…in the meantime trying to get on with daily life best I can… tha ks guys em

hey all…still plodding along…lol saw orthos thurs but it appears they don’t think the shoulder/ arm is rotator cuff problem…but neurological as the level of weakness on left and some on right isn’t usually seen and x rays were ok. but they wantan MRI to be sure…my muscle strength is not good in hands or arm and there is muscle imbalance too…something the neuros didn’t pick up on as we only spoke about my problems in that area …so they want me back to see the neuros as things have got worse last few weeks…now getting used to a power wheelie inside as fre wheeling is impossible now…hope it’s just a temporary thing…and gives my arms a rest and he,ps re pain…all arm move,eats are painful now esp round the front of my shoulder …orthos will write to neuros and give them a kick upthe ass so to speak lol em x

Em, l did have to have a mri - for my rotor cuff. l injured it after several nasty falls- then OH needed ‘everything’ done for him when he had a brain tumour. Big chap - and l was trying to wash and dress him and toilet - he is ok now - but it was this that finished off my shoulder. The rotor cuff op was keyhole surgery- l have a friend who went to same surgeon after a nasty riding accident - he showed her a video of the op - saying this is similar to her problem. She happened to look at the label on the video - and it was the one of my op. So l am now a film star!!!

l do take a high dose vitd3 to help with aches and pains - 10.000ius daily - and l take magnesium 750mg with it - seems to help.

Hope your aches and pains improve - we have enough to cope with.

F.x

thanks campion…am just so baffled by it all…yes will try vit b and magnesium as all this prescription stuff isn’t helping…perhaps I do have rotator cuff and something else who knows…I don’t think tendonitis would cause this level of weakness and pain and only have this in my left arm/ shoulder…and the pain is located specifically at the front of the shoulder and the top and also there my biclep joins my shoulder…but often radiates down the whole arm and into my thumb and forefinger…although I am getting new pain behind shoulder blade and trapezium, and tingling across neck and shoulders and down the left arm…for some reason am getting nausea too at same time…most unpleasant"" thanks for your advice and tips… em