Yesterday was not a good day. The district nurse came to change my SPC, she gave me plenty of warning so I could take something to ease the discomfort as I’d asked. I thought all was going to go ok until she couldn’t get it out. No amount of twiddling was getting it out. Oh gosh it hurt. I was sped off to A&E at the hospital that put the SPC in, they gave me oromorph (niiiiiiiiceee!) but they still peeled me off the ceiling after one go. That was a definite 10 on the pain scale, need more morphine me thought. So, I’m back at home with a deflated catheter that won’t come out,waiting for a surgery date for them to ‘pop a camera up’ to see what’s going on and get the darn thing out! With luck they’ll top up the Botox while they’re at it as that’s wearing off after 10 months. Has anyone else had similar problems? I think 12 weeks between change may be too long? Sara x
hi sara
poor you! ouch!!!
i’m just doing self cath and i’m terrified of things getting worse.
i hope you get your appointment through soon
carole x
Hi Sara That sounds awful and still not sorted after all that pain. My 1st change is next Thursday and I’m terrified!! My wound is still scabby and the thoughts of having the pipe pulled out really makes me feel sick. I really feel for you Sara and hope things get sorted and quickly. Let us know what happens. Linda x
Hi Sara, what an awful experience for you. Like Linda my first change is next week (Friday) and is being done by the district nurse and I am terrified! My wound is still scabby and weepy so I don’t know whether they will still do it. My discharge notes from the hospital said for it to be changed after 12 weeks but the nurse said that was too long, but if they change it next Friday it will only be six weeks so I’m wondering if this is too soon. I have already had one bad experience as when the district nurse had to take the stitches out she couldn’t and I ended up like you in A & E with a doctor diggging about for about half an hour to remove them. The pain was awful. I hope things improve for you and let us know how you get on. Take care, Anne x.
My first change was a piece of cake, no stitches to get embedded and healed really quickly. The 3 subsequent ones have not been fun, my stoma (hole) is too small for the size of catheter. I still think it’s worth it even with all of this hassle. I’m sorry if I’ve made any of you worry more than you already are, I went through this with little knowledge. I think it’s just as hard hearing tales of how it’s going for people. The first change should be done by the hospital, my district nurses wouldn’t touch it until after the first change. I’m glad my GP has signed me off for a week and is chasing them up about when it’s going to get done. And, at least the thing still works! Sara x
Hi Sara, I’m new to this I have a spc which I have had for nearly 2 years. Mine has been stuck twice so i know what you went through, I always had problems every time it was changed the pain was horrendous. But now I have it changed under sedation every 8 / 10 weeks
Hi,
I too had to go to A&E at one stage for it to be removed. I started with having it changed every 8 wks and now have it every 5, which is a lot better. Anytime it becomes blocked one particular district nurse comes, we have an agreement that I am not to go to A&E again and she never fails, after much tugging!
I understand what you are going through.
There is a solution you can use on a weekly basis which should prevent encrustation and a different one when it comes to change it. Not all district nurses believe in these but they are called OptiFlo Bard irrigation solution 50ml, should you wish to discuss with them, can’t say too much about them as only just started to use them.
They also recommend twisting the spc at the site(daily) , again to prevent encrustation. Have to admit I don’t do much of this, but don’t tell the nurses, lol.
Drinking enough water is v important.
Anyway good luck and hope all your spc troubles improve.
Oh chuffin ell…all these horror stories and here`s me having an spc fitted next month.
Can anyone else who has a relatively easy ride with spcs and getting them changed, please, please, please tell us?
Frances, are you reading this? You always make me feel better.
sara, have you been using your spc on valve? I am wondering if that could be contributing to problems. I am hoping to have mine on free-drain, as the in-dwelling catheter I had before, flooded alot on valve. Have you been using the belly bags…dont think I like the sound of them now.
Oh I must keep thinking of the many benefits i`ll enjoy, after the initial settling in period.
luv Pollx
Hi everyone, I’ve had my spc since Nov last year and up two weeks ago had no problems, but nothing quite as bad as Sara Everything stopped draining suddenly when I was in rehab hospital, think it was 'cos it was due for changing! (My first change was in outpatients clinic, and thereafter it should be done every 8 weeks) It was extremely uncomfortable as uterus went into spasm, but after waiting 5 minutes or so & a bit of relaxing my tense body, it went in quite easily! Poll, it is a big benefit to have, n I would say that just about everyone wouldn’t go back to life pre spc! I use free flow into leg bag and also the flip flow valve which is excellent if you want to wear tighter fit trousers. Only downside with flip flow is I find I definitely have to empty every 2.5 hours, whereas the leg bags are more accommodating when it comes to fluid allowance! Bev
Its does happen sara, I am supprised the hospital didn’t get it out. Maybe they should of tried gas and air. I take it was a routine change or they would of got you in sharpish. Sometimes the entry hole of the suprapubic over granulates and you get scar tissue build up which stops the poor hapless nurse changing it. Its easy resolved in surgery. I hope you get your date through quickly and remember to drink plenty of fluids in the mean time to keep it patent and flowing. Don’t forget new poxy guidelines state that anything with caffine in doesn’t count as fluids because of caffines effects in the bladder. xxxxxx
Arghh I really feel for you. I am managing with self cathing at the moment bu dreading a move to a more permed ant solution.Hope you get sorted soon Ellie xx
Hi Bev,
thanks for your words of encouragement.
I have told myself to expect the first few weeks to be difficult and then I know I will love the many benefits. Aside from the ease of emptying, when transferring is so horrid now, I am also retaining and this could cause kidney damage in the long term.
luv Pollx
l have had my SPC 18yrs. lt is the best thing l ever did - getting back some self-esteem for a start - squelching away in nappies/pads - being soaked right down to my boots is the most miserable and lowering state to be in. Now l can stay in bed all night - go on car journeys knowing that if l needed to l could empty the drainage bag into a plastic bottle if need be. l now can pee standing up lying down - even on horse-back [Oh yes l have] All the things that we girls have envied the boys doing.
The procedure for a SPC - is just a small hole pushed through directly into the bladder - a much more straight forward method then peeing naturally. You might need a bit of general anaesthetic - but only for a few minutes. Quite often it is done with a local.
The body knows it has a ‘foreign body’ in it so it does try to object. And with MS -are muscles spasm - and the bladder is a large muscle. lts the spasming that makes us lose control and wet. Meds like vesicaire help with the spasms. Drinking plenty of water is necessary - but do not gulp down pints in one go - just little and often. Suddenly loading the bladder will cause it to spasm and then when it empties it causes a bellow effect - sudden inflating then suddenly deflating. Our bladders do contain quite a lot of sediment - and with a SPC you can see it in the catheter - and if the cath is left in too long [normal change is every 6 weeks - l have mine done every 4/5] the balloon part can get gummed up with the crystals this can cause difficulty in its removal. The balloon is inflated with 10ml of sterile water or glycerin. l prefer the glycerin - as the 10ml stays does not evaporate and l make sure the district nurse waits until the exact 10ml has been withdrawn before she tries to remove it - do not hurry this part. My nurses always use cathegell or lnstagell to numb the area before she take it out and she put some into the hole before putting in the new cath.And l make sure she does not insert it too far as this can cause discomfort and even block the uretha. Just insert it slowly and as soon as the urine is flowing into the bag thats the time to ‘tap it off’. For years l used a agency nurse - who l thoroughy recommend as they are doing SPC’s all the time. Luckilly, my agency nurse has trained up the local district nurses - and they turn to her if there is a problem with any patient.
Wilkinsons and Thackeray - are two that l know of - and l order all my caths/bags/cathegell via them on the phone - they sort out the prescription via the GP and deliver straight to me.
The cath site will never ‘heal’ as such because it has a moving part in it. ~Keep it clean - there is usually a little dried blood which is normal when you consider what is happening. The babies nappy rash cream Bepanthenum is great at keeping the area healthy as a tiny amount of urine can leak out of the cath site and will cause soreness. The cath can be gently turned occasionally - this will stop the eyelet holes on the tip from adhering to the bladder wall - lt can get itself sucked in.
My SPC is undectable - it sits nicely across my tum - tied with a lace around my waist. To empty l just have to undo the top button of my jeans and the tap end is by my hip. lts as easy as that. l have no length of tubing - just the short length female cath - so mine does not kink and block. l have been taking D-Mannose for the last couple of months and it does keep the sediment down - so l imagine it is also keeping my bladder healthier. lts very rare l get a uti - which before having a SPC was a great problem due to retention.
So anyone who finds a cath change a trauma - do enquire about getting a agency professional to attend them - as this is not the norm. Avoid latex caths - the silicone ones are better. For some reason the bladder reacts badly to latex. lf you are susceptible to infections - there are silver-tipped caths that will stop that. l find it better not to cover the cath area - let the air get to it as much as poss. Covering it seems to keep it warm and moist - which is a real breeding ground for bacteria.
Quite often when l have mine changed - it is out before l have realised it. Now l am not the bravest when it comes to blood tests etc - l do have to look away. My SPC is the only body piercing l have - l feel physically sick when l see someone with studs through their tongues/eyebrows/ears etc. Just seeing someone put their earings in makes me shudder.
Hope this has helped those who have recently had their SPC’s and for anyone about to have one.
healthtalkonline - is a new website - dealing with problems with chronic illnesses - they have recently added indwelling catheters to the site. They interviewed a cross-section of all ages who have lived with one for some years - pointing out how we who have SPC have not necessarily been giving the advice/aftercare we need and the lack of specialist nurses to help.
l am on it - in the over 60’s group - and you can see me on video.
Fame at last !!!
Fx
Hi Campion, Thanks for your words of encouragement. My catheter site is not so sore now although it is still scabby. I am going to my doctors tomorrow so she can look at it to see if she thinks it will be OK to be changed on Friday which will be six weeks since I had it done or whether I should wait a bit longer (hospital said 12 weeks). I agree with you 100 per cent that the SPC is far less restrictive and I am so glad that I had it done. I think I will feel a lot better when I get this first change out of the way. Feeling pretty stressed at the moment as we are moving house this weekend as well. Anne x.
Oh Frances, you are a marvel!
Thankyou so much for explaining it all so well.
I will keep all your advice in mind and use it too.
I will have a look at you on the website you mention.
Is the hip good now?
luv Pollx
One thing l did forget to mention - catheter valves. They are ideal for disabled people who find it impossible to transfer on to a toilet. As long as they have control of their bladders - As they can empty their bladder several times a day into a bottle via the valve. BUT -for us with MS - we have no control of our bladders so we would not get enough ‘notice’ to know when to empty. ln my personal case - l would be needing to go every 5mins - day and night. l do not want to go back to that sheer misery.
And the reason l do not have the long tubing which you have to strap to your leg - is the bag can get heavy when full - and it can drag onto the cath site when you are standing up/sitting/ moving. Also, it is so demoralising - having a heavy bag of pee strapped to your leg!! Just a good stretchy pair of short style nicks [Tescos 2pairs in a pack - black/shocking pink/purple] and a co-ordinating lace to tie it around your waist - keeps it all comfy and secure. And l do the same at night - no connecting to a night bag. The bags l use are from Manfred Sauer - they are cotton -feel-backed on one side for comfort. And l get the direct valve ones - so that means no tubing. They are 600ml - so big enough not to ‘bulge’ and show. lf we get any warmer weather l can wear my shorts.
Once we know we are ‘in control’ and comfortable with our bladders -we are in a much better position to cope with all the other ms symptoms. As l think the bladder/bowel incontinence is the one that really depresses us and just takes over our lives.
l am a fan of the Peristeen system - for bowel control - this works so well for disabled/wheelchair folk and also for people with ms who have a bowel that works when they don’t want it to. Something else to make our lives miserable!! This system is used widely by paraolympic athletes.
F.
Frances, you`re a mine of information!
pollxx
Thanks for those words Frances. My 1st cath change is on Thursday and I’m extremely stressed about it. I have been taking D-Mannose so hope that is doing the trick with the tip. Hope the hip is doing ok? Linda x
Linda, Have you tried gently turning the cath round - just to make sure it is not adhering to anything. l know it is a bit daunting at first - l know l was terrified to begin with - but you will soon take everything in your stride.
Try not to get all tensed up - easy said then done. And don’t be alarmed if a little bit of blood comes through - this is quite normal as the ‘hole’ never gets the chance to heal. l clean mine first thing in the morning and then before bed. Usually it is a bit ‘crusty’ and if you don’t get it off it irritates the area and makes it sore. Anti-bacteria wipes or baby wipes will do - then the nappy rash cream.
Make sure the nurse uses cathegell or instagell - it really helps - although it does ooze out afterwards and looks rather messy but after a couple of days its gone.
All the best - you will be OK - Some people manage to do their own change or get their OH to do it.
F.
I’ve heard some good ideas here, thanks folks. UPDATE: Made a phone call to Urology secretary this am. Oh yes I can see you’re on the surgery list for July WHAT!!! A stressed call to very good GP and PALS and I’ve got an appointment for surgery 24.6.13. Still too long in my mind but hey ho! I won’t be letting them leave me 12 weeks between changes. Sara x