Hi, just when things seemed to be going relatively smoothly and dare I say it less stressful things have suddenly become difficult again! My mum had a catheter fitted about 8 months ago because of problems emptying her bladder properly and the obvious incontinence. She has had a lot of problems with it getting blocked and then bypassing so have had to keep doing regular wash outs. They say it is because of the ph of her urine it is too alkaline when it should be acidic and she passes large amounts of sediment which causes it to block. Today the DN has decided that it would be better to have the catheter taken out so has removed it. The problem is mum is now very wet and the tena pants are not able to hold it all. My dad is on his own with my mum for the majority of the day and can't change mum single handed so she is left till someone can come and lend a hand to get her changed. It just seems ridiculous to me. Just wondered if anyone else had experienced problems with catheters blocking and sediment or if this is something unrelated to MSA. Sorry for the rant just a bit frustrated by it all and my mum is stressed and upset thinking she is causing extra work for us all.
Catheter problems!: Hi, just when... - Multiple System A...
Catheter problems!
I can’t really comment on what to do but just wanted to send you a big hug as you battle through this terrible disease with your parents. ❤️ xx
Thank you that's really kind. At times it can be so stressful hate seeing my parents struggle. Xx
I know I feel exactly the same. It’s such a cruel disease xx
I agree it so cruel taking things away bit by bit , so distressing to watch , thinking of you x
These things are so awful, and you probably cannot believe that it is all happening. My husband could not tolerate a catheter, so we had the same problems, and one person cannot do a total change and bed change by themselves not to mention 4 or 5 lots of washing each day. You do not mention any carers. If your parents do not have any they need some. They may have to pay themselves, but given the current situation you may be able to get support from NHS continuing care. Being brave and having stiff upper lips does not work, you need to rant and rave to anyone that will listen GP, community matron, district nurse. If you do not make a noise it is easier for everyone to assume you are all 'coping. Get on the phone to everyone you can think of.
I hope you can make some progress.
Very Best Wishes
Amanda
Hi thank you for your reply. My mum and dad currently have carers in twice a day trying to get them to come in more regularly but my dad has taken a long time to come round to them going in at all so having to take small steps with him. They get NHS continuing care but we have recently changed care company to one that are a lot more expensive and the personal budget officer has been really hard to get on side. The new care company are so good and definitely worth the increase in charges but nhs continuing care have warned us against having any more additional help at the cost of the current carers. Not sure if what they are saying is right or not because as far as I was aware NHS continuing care is supposed to cover the cost of all care needed whether it's a nursing home or care company. I think I probably need to seek advice about it really because we definitely need more help especially with the situation as it is at the moment.
Hello. Yeah definitely carers. Someone from a local advocacy service for elderly/disabled folk can get the authorities moving quicker if you get fobbed off. I hear your frustration re continence care! It turns into such a faff, and you just want to keep them comfy. My understanding is the DN or gp should be able to refer to a continence nurse for proper assessment of needs. They should determine options/correct pads absorbency level, as too absorbent dries skin out apparently. We have had tena soaking issues too. Been assessed for side fastening pads (nappy style). Much better. They get changed every few hours, and a more absorbent one on overnight. (conveen sheaths for men worked well for dad for 2-3 years, but eventually started to cause some inflammation/bleeding from the pressure of constant use). Best of luck!
x
I agree with other comments about getting your local continence team involved - ours are very obviously called the "Bladder and Bowel Team" ! No being discreet about that!!
They should be able to alter the number of weeks between changes of catheter to lessen the blocking and trauma and have you tried all the tricks with cranberry and vitamin C etc to alter the ph of the urine to ward off infections. Geoff used to block before 12 weeks with sediment etc so it was reduced to 10 weeks, but today for the third time it has been difficult to remove and fairly encrusted and so it will be 8 weeks in future. We have periods of giving Geoff cranberry juice (through his PEG Tube) to combat any problems, which reminds me it is probably time for doing that for a couple of weeks!
Hope you find a helpful and dignified solution. Having the disease is bad enough but having these kind of issues is horrid!
Diane
I was an RN for 25 years before getting too sick to work. Took care of many catheter problems. Sounds like your mum definitely needs an indwelling catheter with regular saline flushes to keep it running. So many things can go wrong if she is not treated properly for this. Please talk to your healthcare provider as soon as possible. All my best!!!
Thank you and sorry to hear you had to give up nursing through sickness. She did have an in dwelling catheter and I used to be do regular saline wash outs. Approximately 3 a week to keep it from blocking but still had problems unfortunately. She had to have a complete new catheter put in about every 3 weeks as things used to get so bad. Can understand why they are worried about it not working and the risk of infection but it's just causing her a lot of distress. Will speak to the nurse again next week and see how things go over the weekend. Thank you for your advice.
Thank you it definitely seemed to work a lot better when I started doing regular wash outs. Fingers crossed they let her have one put back in. She is completely bed bound so that probably doesn't help with keeping things flowing. Do you have MSA yourself?
I have one neurologist that is convinced of it, but a second opinion didn't agree, so I continue to swing in the balances of the unknown after more than 10 years of obvious neuromuscular symptoms. I also suffer from Central Sleep Apnea, P.O.T.S., Autonomic dysfunction that affects breathing, cardiac, BP and worst of all my internal thermostat is quite broken. Then there is muscle weakness and just too many other things to go into. So if you need someone to talk to, I am here, always glad to help out where I can....trust me, I would love to feel useful.
I am so glad they put the catheter back in your mom. I understand all the skin issues, discomfort, and she may not even realize or be able to tell you when her bladder is too full and causing other symptoms. For this alone, a properly functioning catheter is imperetive. It affects blood pressure, thermoregulation , respiratory issues, etc. I run into that myself, although I have been putting off going to a urologist...bad nurse, lol.
Take good care,
Lyn
Hi there
To stop the constant washing or should I say reduce it, buy 2 Kylie sheets. If your Mum wets herself it will go into the Kylie which absorbs it so she is not lying in urine. If you have 2 you can wash them every other day or maybe less if it's not wet. I don't have any ideas about what you can use apart from nappy style pads.
Sadly the CHC can dictate how much money you can have and as they are short of money anyway I am not sure you can get anymore. However I think your Mum needs four visits a day! Especially as your Dad is struggling.
Good luck to you.
Marie x
Thank you will look into those and try and work on getting my dad to have the carers in more. Thank you for your help!
Glad to have helped a little. You do need to have a gentle talk with your Dad. Otherwise he will become ill himself and who will care for your Mum then?
Marie x
Hi. My husband has also had problems with sediment blocking catheter tubes . We were calling out the out of hours DN every few days . The DN has now fitted a wide end catheter which is supposed to cut down on blockages and washing out 3 times / week . So far so much better . He is not able to pass urine so catheter is necessary evil . Hope you find a solution .
Hi, we were the same calling out DN at least once a week. My mum has tried several different catheters but no luck unfortunately despite regular wash outs and some sort of gel which was used to put into the balloon which was supposed to help break down the sediment. They have decided it is not safe to keep it in. There's always something isn't there? Thank you for sharing though x
Hi sorry you are having trouble. How often are they changing the catheter? My husband has an indwelling catheter (he has PSP and prostate trouble) and although the catheters are meant to last up to 12 weeks, the district nurses quickly realised that the catheter was getting 'gungy' (medical term 
) and they now change every 6 weeks and fingers crossed..... If all else fails has anyone talked to you about a suprapubic catheter? It goes into the top of the bladder so through a small incision instead of the urethra but is basically just another way of putting in a catheter and bags attached as normal.
hope this helps - I was a qualified nurse so I know many patients with M.S having this.
My thoughts and love are with you as well as a hug... this disease is unbelievably difficult and sad.
Thank you, I haven't heard a suprapubic catheter mentioned. Would it involve having to go into hospital to have it put in? As my mum is completely house bound and not well enough to travel unfortunately. The nurse is going to reassess on Wednesday so will see what she says then. It is difficult there always seems to be another situation to deal with and nothing seems to run smoothly. I think we really need to get the carers to come in more regularly to help with things a bit. Thank you for your help xx
have found the super pubic catheter good. they change it every 6 -7 sometimes 8 weeks but never longer. Have to drink heaps of water to keep it clear.They check the balloon inside every 2 weeks. The catheter change is only a little uncomfortable. The op was not long and one night in hospital. I have a flip valve which I use in the toilet and a bag for night.Might be worth considering
Well that’s the out of hours DN just left after fitting new catheter . In spite of 3x per week flushes ( last one 2 days ago) and a wide ended catheter my husband has had to suffer the pain of a blockage and we both have suffered yet another broken nights sleep . Dealing with MSA and catheters is driving us crazy !!
Sorry to hear that, know exactly how you must be feeling. This condition is hard enough as it is without this added stress. Feels sometimes that just when you get one element sorted something else comes along to test you. Hopefully this new catheter will be good for you both. The nurse is coming today to reassess my mum's situation and do a bladder scan so will see how that goes. All the best for you and your husband!
My wife had these exact same problems and i was always having to do catheter flushes, sometimes twice a day. Initially she had a latex catheter fitted and the DN's were trying to make them last 3 month's at a time. This was just not working out at all. After talking things through with the continence nurse her catheter was changed to a silicone long life catheter which they change every 6 weeks (or i am on the phone till they do). She is a lot more comfortable now and i usually only have to do a flush out once at about 5 weeks in, if at all. Silicone ones are much much better.
Kev
Hi Kev, Thank you mum has tried both and unfortunately had no luck with either of them. They seem to be continuing without one at all now for the time being but is being assessed every week. Not nice for her though x
I would also coment having read all the posts here that there are three types of flush outs solutions. Saline solution is just to keep down on bladder infections, it is no good for desolving sedement problems. For that you need to use an acid solution, fo which there are two strengths. I use to use the stongest acid one first (pink lable) then a second flush with a regular acid one (green lable) then finish of with a saline flush (yellow lable) to help stop infections. I have the flush out manufacturers recommend leflets and follow that as unfortunately the DN or on a budget and have to spend the minimum on a patient until it proves necessary to increase spending on their care.
Knowledge is power.!!!
That's interesting thank you, I did get the impression from the DN that there were other things they could try. They said her urine is too alkaline and that an acid wash out would be needed but they have to prove to be trying other methods before they are allowed to let us have the acid wash. It's infuriating can understand they are on a tight budget but honestly it's unfair. My mum is at end of life, bed bound and completely aware of the fact she is lying in wet pants and they think that's ok?? Sorry it really upsets me!
I don’t understand 
Mum newly diagnosed with MSA-P and we are all struggling
Help!!
