Hi Louise Pleased they’ve sorted the drainage out for your mum. I’m doing the same at the moment although I’m going to try using a valve during the day. Apparently I’ve got to wait til things settle down. It’s seems to be working ok at the minute thanks. It did stop draining the other night but a bladder washout sorted it out! Hope your mum will stay infection free. Linda x
My mums infections seem to be under control but she has no mobility at all. Prior to going in hospital last June she could walk with a stick but since then she hasn’t walked at all. She’s now in a nursing home and has physio every day to try to strengthen her legs but the physios arent that confident she will walk again as the tenden at the back of her knees is really hard. I have heard that people do walk again after this amount of time. Also her state of mind isn’t good probably because of her lengthy stay in hospital and being so ill and we also don’t know how much the ms has affected her but we are trying to stay positive.
Hi Louise Thanks for the update. You must stay positive for your mum. I too haven’t walked since the start of the constant infections last April. Pre them I could walk a few steps albeit tentatively!! She is getting the help she needs at the moment and I hope that she too can stay positive. Keep your chin up and love to your mum. Linda x
A ms friend of mine - who cannot walk because of the tightness of her calf muscles is going to have botox injections to help remedy it. l think others on here have also tried it.
Might be worth looking into.
Love to your mum
Fx
I use to have bladder infections I have Manuka honey 10+. A teaspoon or 2 every day and Nitrofurantoin tablet ) speak to your Doctor ) and it’s fine. Let me know how you get on. Do not forget drink plenty !
Hi does anyone know if the supra pubic catheter has to be changed? My mums had hers for about six weeks now. She’s received a letter from the hospital for an appointment for a catheter change but we’ve been told by a nurse in the rehab centre she’s in that it doesn’t and is permanent. I guess we will have to ring the hospital to find out but just wondered if any of you knew. Thanks. Louise x
Hi Louise Yes the catheter definitely has to be changed apparently anything from 6 weeks to the 12 weeks the catheter is licensed for. Not sure where the nurse is getting her information from??? How is your mum doing with the SPC? My site is still very tender. Linda x
Thanks Linda. My mum doing well thanks her state of mind not great but no surprise as she’s not been home since 24th June last year and being so ill has probably brought the ms on more. I hope your SPC site settles down for you soon. Take care. Louise x
l have mine changed every 5 weeks - any longer it gets granulated and is difficult to remove causing trauma to the site. 6 weeks is the norm - no longer. Waiting for the district nurse now - as l am due for a cath change.
F.
I only get mine done every 12 weeks! I have been lucky and get no problems other than my stoma isn’t big enough so they are swapping to a smaller size. Gosh does it make my eyes water when they change it, the nurses tend to just turn up so I don’t get chance to take anything for the pain.
Sara x
mine is changed every 12 weeks. I’m lucky, i’ve not had any problems other than too small stoma so hurts like blazes when they change it. Smaller catheter next time!
Sara x
Hi I’m not yet completely diagnosed but have been suffering uti’s most of this yr with anti bio’s reason for my infections are the fact I need to go but brain communications not working right it’s a nightmare and I’m only 37 I already have a bowel that doesn’t work don’t want my bladder too- any advice??
First change for a SP catheter must be done in the hospital then after by the practice nurse or district nurse or if properly quilifed the nurse in the nursing home. They should last 12 weeks if its a long term catheter 6 if its a short term.
My mum should be coming home soon most things are in place for her but as she has no mobility she’s been having physio every day in rehab unit but they said there is no funding for her to have this at home. We obviously don’t want this to stop as it has been really good for her. Can anyone offer any advice? Thanks.
Well after just over a year in hospital my mum finally came home last week we are all so pleased. She’s doing really well, still no mobility but never say never! X
great news,hope your mum continues to improve,as for the physio,can you do the excercises with your mum, you could ask which excercises are best for her, mine are mainly pilates based ones, i can do at home,you could have them printed out,my neuro phsio printed all mine out for me, i do them most days .before i get up,and mine really help me.
What good news - l am sure she will continue improving. Now she has a SPC - which will make life easier. l have had mine 18yrs and l very rarely get a uti - which was the problem prior to SPC. l now take D-Mannose capsules - and they keep my bladder healthier.
Next friday l have an appointment to see a physio - so hoping they can show me exercises to help improve my mobility.
And l am going to ask about Fampyra -the walking drug. See if they think l could benefit from it.
Great news…So pleased your mum is at last home. I’m sure she will now improve being in her own surroundings will be much better for her. Best wishes to her Linda x