Hi,
I have a suprapubic catheter of which I’ve had for a year now. The problem I’m having is that it blocks nearly every week. I have been told its bladder spasms & its common with ms suffers.
I would like to ask if anyone else as a similar problem & if anything can help to prevent this at all. I’m having Trospium 60mg at the minute but it doesn’t seem to help.
Thanks
john
John have you tried Baclofen for the spasms? I don’t use a catheter but I do get spasms and find Baclofen very good.
Also think you should post this on Everday Living which has much bigger user group.
Good luck. Hope you get some useful advice,
Pat xx
Hi John
I agree with Pat, I use baclofen for spasms, have a word with your. GP or ms nurse.
Pam x
John , Does the tubing begin to get silted up with debris from the bladder? As this can cause blocking - the drainage holes are tiny - and the foley catheters - which l expect you use are not a good design. The tip with the holes in can easily get ‘sucked’ into the bladder wall - causing you to ‘by-pass’.
D-Mannose is a good supplement to help keep your bladder healthy. l have had a SPC for over 20yrs - lost count. And for the last year l have been fortunate to have the Duette catheters - which have two balloons - one on the tip which cushions and buffers the catheter. lt prevents damage to the bladder and less chance of uti’s. Look on youtube - they are made by Poiesis - based in Jupiter Florida. l just so happened to have a friend staying there with her son - and we arranged for some ‘samples’ - in fact they let me have enough for 3yrs. l have mine changed every 5weeks.
Another thing you can try - is bladder wash-outs. Simple to do - and will wash out the tubing and the bladder. l usually do mine about once a month. You can order them from whoever you get your caths/bags from -or ask your nurse.
Next time you think it is going to block - squeeze the tubing several times to try and break it up - and also just pull the cath our a fraction to release it - and regularly turn it round and round - otherwise it will get set into a position that blocks.
thanks for your replies,
i’m sorry but should of said, i take baclofen as well as trospium.
regarding debris in the catheter, i have a bladder wash every week & it is clear when it’s changed. its the bladder spasms that’s causing it not to work properly.
john
Hi John. I don’t have a catheter but do have bladder issues and was a nurse for many years. I know it sounds really pathetic but I assure you it has made a lot of difference to me and quite a few people I know - try avoiding caffeine for a while and see if that affects you, it can cause a lot of bladder irritability. If you’re a big tea addict like me, you may get headaches initially when you stop it but they don’t last long - a couple of days. It may not stop it completely but I couldn’t believe what a difference it made to me.
Cath x
Hi, I self catherterise but a friend of mine who is spms. She doesn’t catherterise but has Botox injections in her bladder. Maybe ask your ms nurse if this could help as I am actually going to be having Botox injections in my legs to try and relax my muscles.
Polly x
hi cath,
i am a tea addict & yeah i will try cutting down on caffeine.
i don’t have any other issues with my bladder apart from spasms.
thank you.
john x
hi polly,
i recently went to see the urologist & i believe botox is going to be the next path to follow. they wanted to see if the medication i was given worked first, but unfortunately it doesn’t seem to.
thank you.
john x
Since changing from a foley cath to the Duette - l do not have the ‘spasms’. l think it is the pointed end of a foley cath [look it up on youtube] that causes the sensitive bladder to spasm. On the youtube video you can see the awful damage done to the bladder by being constantly objected to a hard pointed end jabbing into it. The bladder gets sucked into the eyelet holes - causing a spasm - then blocking and by-passing.
Southampton University - are hoping to ‘design’ a better catheter - the foley is over 70yrs old!! - l contacted them and told them my success with the Duette. And this week they have asked me to contact someone who is interested in finding out more about it. Duette has FDA approval in US - but not an export licence -yet - lt will take our wonderful nhs many years to try out something better designed.
thanks polly, i’m going have a look into that.
john x
hi spacejacket, i looked at that Duette & it does look better, for easing bladder spasms.
thank you
john
Hi, I also have an spc. I do get spasms, particularlry when passing stools or wind.
I take betmiga to calm the bladder, as oxybutynin werent doing much to help. My uro told me that baclofen has no effect on bladder spasms.
I asked my uro about the duette catheters and he said he wasnt convinced they would help…atlhough Frances tells us how much better they are.
I also spoke to my district nurses, who change my catheters. I am going down to every 4 weeks for changes now, as they do block up and cause by pass now and then. They said unless duette catheters were prescribed for me, they wouldnt use them, if I were to get them privately…so no joy there!
The about the wash outs…my district nurses said ony they must do it…not me.
See how different areas work?
pollx
I have a spc which i have had for 4yrs with few problems and i have botox every 4month which is amazing ,please try it anyone on here who hasnt already done so.its so good to read on here that we all have simular problems so we understand all the wacky symptoms.I wasnt good last night and couldnt climb stairs so slept in chair hope i can climb them tonight for a better nights sleep take care all jo x
Hi. I got my appointment through for Botox injections in my legs on 28th April. So I am hoping it’s going to ease my very stiff legs at least a little bit. Good luck with you fell side.
Polly x
i really hope it works for you polly, let me know if you feel better when you’ve had it done.
john. x
I will do fellside
Polly x
Fellside. Will you let me know if you have Botox in your bladder as well. Because I know it helps my friend but she has to have hers done in hospital and I know the first time she had it done she stayed in overnight but now she is in and out the same day.
Polly x
polly, yes course i will. i think the plan is for me to be admitted over night in hospital the first time. they was just waiting to see if the medication they gave me made any improvement.
john x
Hi Fellside, hope you still look at the forum. Yesterday I had my Botox injections in my legs. I had one in each inner thigh and one in each calf. Well it did sting but was ok. The only problem is I got so stiff in the car on the way home that I could hardly get in the house. Anyway I did find I had less leg spasms last night but my legs just ache so much but the physio did say it could take up to two weeks to work. That’s if it does.
Have you had Botox in your bladder yet ? Please let me know.
Polly x