Forum

Complications of 1st SPC Fitted

Primary progressive MS
#1

After too many uti’s I had a SPC fitted last Friday. Should have been a day case with general anaesthetic. I had problems in the recovery room. Too sleepy, very high b.p 230/121. Needed to stay in hospital for 4 days.

I’m still recovering as I struggle with sensations of having a very full bladder, each time the tubing moves a tiny fraction, I have spasms & it’s very uncomfortable. I have strong sensations of bladder spasms within my urethra. It’s a sort of shooting pain, up & down the urethra & I feel like I’m desperate for a normal wee, so desperate it’s painful. I want to hold myself near to the urethra to support it. I’m currently lying in bed with my legs crossed, despite the leg bag draining properly.

I know a few members have a SPC, did anyone have any settling in stages? Any advice folks?

Chrissie x

#2

Sorry to hear of your problems and I hope they settle. My only issue was sepsis after the first change by the district nurse as I hadn’t taken any antibiotics before and after the change. No one warned me. Close call. Paul

#3

Hi Chrissie It’s normal to have these sensations, let’s face it, that tube doesn’t belong there and your bladder wants to push it out. It will get better I promise. I take Tolteridine for bladder spasms ands it works really well. I also take ACV (Apple cider vinegar) in capsule form to keep my bladder healthy and I drink a lot of water to keep the tubes well flushed. Apparently my urine resembles champagne it’s that clear. Hang on in there, it does get better. All the best Jane X

#4

Thanks Paul & Jane. Sitting down is painful & so uber sensitive, I could barely move earlier. I don’t understand this amount of pain. Especially as there was no pain before or after the op. No pain for 6 days, then huge discomfort & pain began.

District nurse visited Wednesday and again today, she knows her SPC stuff but unaware of ppms problems - Nerve pain & cognitive difficulty.

I understand that tubing is placed inside my bladder, via a small hole through the flesh & skin to connection tubing. So one end is floating around in my bladder & the other end trails outside my tummy to my left leg direct to the leg bag. Does this tubing move around the bladder freely, causing irritation & pain? Is it usual to have no dressing over the hole?

7 years ago, I had a TVT (Tension vaginal tape) to hoist my bladder up. Incontinence was considered to be due to a weak bladder & stress incontinence, then had the PPMS diagnosis.

Jeeeez, it’s almost 1am & I’m sitting on the loo praying for this pain to go.

#5

Awoke with spasms, think Jane has explained why the urethra is so painful at the slightest move, it’s trying to get rid of the catheter end still in my bladder.

On my knees with pain, can get comfy eventually but I’m so tensed up!

#6

Hi Chrissie,

Ive never had dressing around thecatheter site. Take pain killers and ask your gp for anti spams tablets for your bladder like Tolteridine.

Hang on in there and take care. Jane X

#7

Thanks Jane, my daughter is taking me to my GP at 3.3pm to obtain a referral direct to Surgical Assessment Unit (will save at least 8hrs in A&E dept). S.A.U will check & correct the spc. Hopefully I’ll have a script for Tolteridine. Trust it to be Friday p.m eh?

Chrissie x

#8

Hi Chrissie

It doesn’t sound right at all.

I had an SPC fitted in March last year. I never really got to a reasonable state with it. I had the feeling that I had a UTI nonstop. But I didn’t exactly have a neurogenic bladder; with me, it’s that the sphincters won’t open. I had a dressing on it all the time. One that was cut to be able to fit around it (with sterile scissors). I also developed a wound infection and had ongoing UTIs. It was explained to me that having an SPC means you’ve always got a foreign body within the bladder so it can be like having a continuous UTI.

When I saw the surgeon again in September, she said she could sort out the wound infection quite easily! (Which my GPs hadn’t been able to do.) But despite that, I decided to get her to take the SPC out and reverted to ISC.

I’ve had no infections and no problems ever since.

I hope they’re able to sort out your SPC this afternoon. Many people get on with them perfectly well and wouldn’t even dream of reverting to their previous method of bladder management. Hopefully, yours will be one of these, just get past the teething trouble.

Sue

#9

Hi Sue, thanks x. Great explanation of your SPC problems.

Its only 8th day since the op. & makes sense about foreign body.’ I’d never heard of Neurogenic Bladder! From what I’ve just read via 'net, I don’t understand why this possibility hasn’t been mentioned at all, even with the difficulties I had before spc.

The Surgical Assessment Unit was swift & conducted several blood tests, a bladder scan and then a CT scan. I stayed in hospital overnight, (where no nurses understood MS, never mind PPMS), for the results. All were “fine” & the doctor let me come home this morning.

They prescribed Co Amoxiclav 625mg anti b 's & Solifenacin 5mg (Vesicare). Plus I take a strong concoction of CD painkillers. I’d neglected the routine of meds cos the ward had passed them to my daughter to take home!

I still feel the need to go for a wee bit not as painful now. Should I ring my MS Nurse?

Chrissie x

#10

Hi Chrissie I’m glad it’s not as painful for you. The fact that they’ve prescribed co-amoxyclav means they’ve decided there is an infection. And it’s not a straightforward e-coli infection. That in itself is going to make you feel uncomfortable and like you want a wee. Hopefully the infection is sensitive to co-amoxyclav. In which case you should be feeling better within a few days. They probably aren’t certain what type of bacteria you have, as it takes a few days to culture a sample, but are giving you a fairly heavy duty antibiotic anyway. (They will be able to tell that it’s not e-coli from the dip test).) So they’ve done a bladder scan and are sure that the catheter is in the right position. Also that you’re draining properly. That’s all good. A neurogenic bladder is one which is either overactive (typically for us, resulting in spasms) or underactive (being flaccid so an inability to retain urine). Mine is neither, so I don’t have bladder spasms, nor am I unable to hold urine. This is quite unusual, most people with MS and bladder problems either have spasms or a flaccid bladder. Mine is all about sphincter control, or rather, inability to relax the sphincters. If I were you, I would talk to your MS nurse on Monday. S/he will have experience of SPCs and should be in a position to help out. I’m very lucky in that my MS nurse was my bladder and bowel nurse until last year. So she is brilliant at such things. But all MS nurses will have experience and be able to help. Even if it’s just reassurance. There are lots of other drugs to help with the bladder, if Vesicare doesn’t suit you, ask for Betmiga. That works well for most people. If they suggest Oxybutinin without trying Betmiga first, refuse it. Oxybutinin should be the last option. Because it is a type of drug called an anticholinergic, which crosses the blood brain barrier and can speed up brain shrinkage. Hopefully you’ll get used to the SPC, the infection will clear up and all will be well. Most people with one manage perfectly well. I’m an unusual type! As I’m often told. Some might say odd. Sue

#11

Ah, Sue, my wonderful odd friend, it’s good to share isn’t it. Shame about the subject.

I’m certainly not as knowledgeable as yourself Sue, but I’m learning, albeit the hard, painful way.

I totally agree with your last paragraph and await the success of SPC. After several worrying uti infections over the past few years, I’m wondering if it’s PPMS damage on my spine, creating a neurongenic bladder.

I’ll call my MS Nurse on Monday a.m. She’s unaware of the large amount of ‘lots of blood in urine’ type of uti’s, particularly the past 12 months.

Thanks for your advice & sharing information.

Chrissie x

#12

Hi Chrissie , i haven’t had chance to reply till now . I really hope it gets better I have bladder problems …frequency and urgency and have had to use a catheter it was an intermittent one , i had botox in September and was unable to wee at all afterwards it was awful the catherta caused a bad uti twice . Thankfully im able to wee again but I have to really push down . I did wonder if the fact you’d had an opp years ago with the vaginal tape may have caused some of your issues with pain , I had a friend who struggled with a lot of pain after her opp with the tape. I considered having the same opp a few years ago but they decided on a repair job instead , I’d had 7 babies and wasn’t in good shape . I have some scar tissue and sometimes have a bit of discomfort. I hope you feel better soon . Michelle and Frazer xx

#13

Hi Shell x. The tvt was done before any idea of MS even existed. Specialists then, agreed I had a weak bladder causing stress incontinence. The TVT was a success until the past few years. It’s turned out that the leaking & weak bladder is due to PPMS damage on my spine.

I’m assuming these problems I have now, are from PPMS spinal damage and not to do with needing the TVT.

I tried to call my fabulous MS nurse, but only got through to her secretary’s ansaphone! Not rang me back yet, so I’ll try tomorrow.

Chrissie x

#14

Best thing ever my spc I had so many infections with the ureatheral one and was often ambulanced to Canterbury after change caused bleed. Only two infections in five years with supra pubic as opposed to maybe 6 a year previously. Hope it all settles down for you… XXX Don