My husband is 6/7 years into MSA condition. Just wondered if I could ask if anyone has experienced any major problems with frequent blocked catheters. My husband was given an indwelling catheter nearly 12 months ago as he could not self intermittent catheterise anymore. The first 6 months went fairly well but the last few months catheter blockages have really impacted our lives. He is under the care of the District Nurses and they are now coming in twice a week to do bladder wash outs. He has had to have a catheter change every week for the last month or so, the last few days have not been good resulting in 2 catheter changes in one day. He passes a lot of sediment at times and of course this is causing the problem. We avoid caffeine, alcohol and fizzy drinks and he drinks 2 litres or more of water per day.i would be interested to know if anyone else has had this problem too and if they found any resolution.
I am trying to get to speak to a Urologist, District Nurses have mentioned Supra Pubic catheters but need to be reassured this would work for him.
Judith
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Jud11
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Hello sorry cannot help regarding catheter issue but you mentioned a lot of sediment being passed - my husband had that issue last year while he had a UTI .Just wondering if district nurses have tested for infection .
My husband has MSA and dementia. He has been bed bound since 31/12/23. He has had four catheter changes and three flushes for blockages since 02/01/24. Always told it's lack of fluids or UTI.. last one was a flush to clear just a few days ago and it was a very gritty liquid he was passing.I actually monitor the amount of fluids he manages which varies from day to day but most times more liquid is taken than comes out. All in all the help given is not very good, as long as you are looking after him at home it's a case of you are left to it.
Keep trying to get liquids in and get antibiotics if needed. Also keep phoning GP and or district nurse for help.
Thank you for your response. So sorry you are having a lot to deal with, dementia and MSA, not good. He does drink a lot, we aim for 2 to 3 litres of water a day. I am afraid GP not any help but District Nurse Team have been very good.
Hi - we've had similar problems with sediment and UTI's. I give TC Waterfall D Mannose - this seems to have really helped. I also add 100ml pure lemon juice to his fluid - but watch cause bad for teeth. He's tube fed so not an issue but if not take through straw. We also change catheter bag every 5 days and more frequently if any sediment.
Thank you so much for your response. I have tried lemon juice and he does have cranberry juice plus a cranberry supplement daily. I will try the D Mannose though. Currently changing catheter bag weekly but will change more frequently and be more sediment aware!😄
Keeping fingers crossed that giving my husband the D Mannose plus lemon juice is going to help. Does your wife have the full dose of 4 tablets each day?
I don't have the answers to your questions but just wanted to thank you and the other contributors for saying about the sediment.
My husband (diagnosed with MSA in Dec 2018) has been having sediment in his urine almost constantly since November last year. He has had 3 or 4 different types of antibiotic. He has started taking the D-Mannose this week as his last urine sample came back as "Abnormal, but expected - No further action".
Our GP has helpfully referred Dave to a Urologist and he will be seeing them in July. It all just seems a long time to wait and I have been so worried as I don't understand what causes the sediment.
Thank you for your response . So sorry to hear your husband having sediment problems too.
Yes it is very frustrating trying to understand what is causing the sediment. I am now trying Richard with lemon juice and D-Mannose. I am also trying to encourage him to use his Sara Steady to stand several times a day, my theory being that gravity will help clear the bladder😁😁
Hoping that when I get to speak to the Urologist he can give us some pointers to help. Guessing that we will have to wait a long time for appointment and may go down the private route. With all the problems MSA sufferers have to endure, it seems so unfair to make them wait so long for consultations.
Do hope you see some improvement in your husband’s bladder problems. It is so hard trying to understand all the various symptoms MSA throws up, I feel like I am always worrying about something, guess you feel the same.
With all good wishes to you both.
Judith
District nurses expected to change my husbands catheter every 8 weeks, but due to blockages it was usually 3-5 weeks since procedure was done about 18 months ago. He was given the procedure because he was regularly having UTI’s. Infections continued, even after the procure, caused I believe by blockages. It is only 2 weeks ago that for the first time it was an 8 week change. Carers and myself flush almost every day, sometimes twice a day from just before Christmas. His last UTI was in November. If his urine output slows down or we see a lot of sediment we will try a citric acid flush which usually clears the blockage quickly. I do think giving daily flushes has helped a lot. We also find if he gets constipated this affects urine output or vice versa.
SJ has difficulty swallowing now so has been fitted with a PEG about two years ago. He has overnight liquid feed, and fluids administered through the PEG during the day, morning lunchtime, evening and with medication.
Can I give some information for those who are starting to have swallowing issues or are at the beginning of their MSA journey:
This will be a difficult conversation but I would advise at the first sign of swallowing difficulties to talk to your consultant about the next step and what options are available. Also ask your consultant or GP for referrals to dietician and speech therapist. Both will be able to offer suggestions and support.
Also ask for a referral to palliative care. Palliative care nurses will often have experience of at least dealing with neurological conditions and possibly MSA. As time goes on you will likely deal with them far more than your GP, so the sooner you build a relationship with them the better. They really will battle for you if necessary and you really can talk to them about anything.
Another great resource is your local hospice. Your palliative care nurse will contact them on your behalf. SJ goes there to have physio and complimentary therapy (eg head massage, back, shoulders, reflexology etc). Our local hospice also offers a Hospice at Home service, they will come and sit with SJ giving few hours of respite. The service is dependant on staffing levels, but even 2 hours every couple of weeks is great.
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help please - is this end stage MSA?
Going Downhill
