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SPC removed

Hello all

I’ve just had my SPC removed. It was put in on 3rd March and after 6 months of UTIs, wound infections, altogether 7 lots of antibiotics, and general discomfort, I saw the urologist today and we agreed to remove it.

Last week I tested out a flip-flow valve in order to make sure my bladder would hold urine after having 6 months of free flow. And the test was fairly successful, I measured the output and it went from 100mls at the start to 300ml and even 500mls once. Then I got another flipping UTI. So went back to a bag for the last two days.

Today (after checking I still had some ISC catheters), I took all my notes about what infections I’ve had, the various antibiotics and symptoms I’d experienced to my appointment. In fact, the process of going through my diary and checking what happened when horrified me, I hadn’t realised quite how many times I’d had a UTI. (Fair enough there was a reasonable excuse once when I’d just had my colostomy and suddenly the remnants of what was in the last bit of rectum exploded causing an e.coli infection!)

I double checked that if necessary I could have an SPC put in again in the future. The urologist also suggested a Mitrofanoff procedure (a surgical means of using the appendix to create a conduit between the abdomen and the bladder, which would then be emptied using a catheter). I’ll be holding this in reserve for if all else fails.

Then she neatly whipped the offending item out. She gave me a prescription for antibiotics for the current infection and any leftover wound infection nastiness. And all would be fine if it weren’t for the UTI. I do keep wanting a wee, my urethra is burning and whinging about having catheters inserted when it already feels poorly.

But, if I can last out the next few days, the antibiotics do their stuff, the hole in my abdomen heals up nicely without any wee escaping through it, and I manage to transfer to the loo about a million times in 24 hours without falling over (Mr Sssue fears this!) then all will be well.

Sue

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Sue, all I can do is wish you all the luck in the world x

I hope all goes well and you stay UTI free. How are you feeling about this change?

Ang

Thanks Ang

I’d be feeling great if I didn’t keep wanting a wee - going from free flow to an internal collection system would be OK without already having a UTI. So my urethra keeps feeling like it’s being tortured with razor blades.

Hopefully the antibiotics will do their stuff and I’ll be back to pre March days. Which weren’t perfect but might be better than the last few months.

I’m happy that I no longer have a leg bag attached to me. But I’ll see what I feel like in the morning, it will depend on how many times I have to get up in the night!!

Sue

Hey Duckface!

Is this going to be another volume like your colostomy blockbuster ?

And can I have your unused leg bags?

Alby

Bloody hell girlie, your waste disposal units have given you some gip, bless you. Them antibiotics will kick in soon, hopefully by tomorrow, chin up babes, India & a little G&T are in the near future, can you drink cranberry, the proper stuff? soothes my burning hoop no end & yes you need to drink it, not douse Mr D, pray tell why you want the bags? or do we need to know, maybe not. Take care lovely, it’ll be better very soon xx

My dear Alby, or may I call you Cumberdick?

No I’m not planning another opus. I don’t want to scare people off getting an SPC. After all, they are wonderful things for most people. And for those of us who have incontinent bladders, they are fabulous. It just didn’t work out that way for me. But then I’ve got a different bladder related problem (sphincters that will not open).

And I do in fact have some leg bags going spare.

Yours as always Duckface x

I can’t drink gin or wine for the next couple of days at least. I have a need to flush my bladder and poor urethra which is moaning like a total beetch. Plus, now I will have to get up in the night to empty my bladder and I can’t afford to fall over. And I don’t know how many times I’ll have to get up!! Boo.

Hopefully by the weekend I’ll be joining you in the virtual cocktail bar!!

Sue x

I really hope so Sue, I’ll meet you by the bar, usual time xx

I just thought, I’m certainly not interested in swapping my spare leg bags for any rhino dung. Or any other old shit you have laying around Durer Towers.

I reckon he want’s them to store his (rhino, I hope) shit in? Must be rank just lying around by now, bagging it would solve the smell. Mind you, if the rhino keeps shitting, he’s going to need an awful lot of bags. That rhino would have to go I’m afraid, or have it stuffed. xx

Morning Sue,

Hope you had a good night and didn’t have to get up too many times. Take it easy today (and Mr Ssssue too), here’s hoping the anit-B’s are doing their job.

x

Fingers crossed that you feel a bit better soon. I am sure the wine is worth the wait. All the best Mick

Sue I hope everything is ok and I’m sorry that didn’t work out for you. Good luck with the wee trips, they’re a bugger xxx

Very best of luck Sue. I know what it’s like to have a bladder with a personality all of its own and I wouldn’t even wish this on Harold Shipman. I hope that everything goes well from now on in. Best wishes, Moira

I hope you are feeling a bit better today Sue. Bladder problems can be so painful.

Best wishes,

Marjie xx

Has the pipes calmed down Sue? Hope so, my Gran always said there is no pain worse than 1s in your head or arse,I often hear that ringing in my ears when I am holding my head or nunny, so glad they don’t often occur together! Anyway, Gin (or wine, posh I might add) will be poured for you at 5 in the hope you will be joining me xx

sue

read most of this-not all. heck-you have through it!

i must thank you because thats been my argument for well over 2 yrs for not getting a catheter!

u take care, e xxx

Hi, Sue has had the most awful time with her spc…but mine`s been about 97% good.

It has improved my life no end!

pollsx

hiya pol

thats great! i was 11 yrs a nurse so saw the cases that went wrong! u are lucky! i am not prepared to take the risk! patient choice?! please listen to me not try to bully me! (thats medics, not u pol!)

ellie x

l have had my SPC 20yrs now. And l hate to think what life would be like without it. Once l found a way to wear it that suited me - and not the healthcare professionals l have not looked back. l do not have a ‘bag’ strapped to my leg - l use a bag without any tubing - direct contact - and a short female length catheter. Just tie the bag with a lace/ribbon around my waist and all tucked into my knicks. Even the nurses who come to change my catheter are impressed and have ‘educated’ other SPC users to do the same.

ln UK, we are stuck with having to use the old type Foley catheter - which if you look on youtube you can see the damage it does to your bladder - this is because the drainage part is so easily sucked into the bladder wall - this causes ‘bypassing’ or peeing oneself.

Three years ago - l managed to locate the Duette catheters that are designed and made in US. They are not available in UK yet. But 3 yrs ago, a pal of mine was on holiday in Florida - and managed to collect a consignment of Duettes for me from the manufacturers in Florida. Poeisis.

l am just about to run out - but another friend of mine has a house in Florida - and Poeisis are going to deliver another supply for me to their address. At the moment, the typhoon/hurricane has made it tricky as the company did have to evacuate - but things have calmed down a bit so l am hopeful that delivery will take place, as my friends are hoping to get to Florida in the next 2 weeks.

The Duette - has two balloons. One is on the tip of the catheter and protects the bladder wall - keeping the drainage part away. They make such a difference.

Another thing to remember with a SPC - is to everyday give it a few turns round and pull and push it gently in and out a little just to keep the stoma/entrance to bladder clear and make sure that the catheter is not sticking. Makes a big difference doing this - helps with the removal and replacement of the next catheter. Any of you who have had your ears pierced will know that you need to keep the ear-ring moving otherwise the surrounding skin will try to close around it.

l am fortunate to have a nurse who is an expert at catheters - this is what she does all the time. She works for Fittleworth Healthcare - and she also teaches district nurses. They often have to call in the ‘experts’ if they have any trouble with removing and replacing catheters.

My nurse is impressed with the Poeisis Duette and they are hoping that soon they will be available for all.

l do occasionally get a uti - perhaps once a year. Mine is caused by my dreadful bowels - l have chronic diarrhoea most of the time. When anyone speaks about constipation - l always say that would be a ‘luxury’ to me. l get into such a pickle - at times - and it is the cause of infection - as you can imagine. The next step for me would be a colostomy - but my ‘rapid transit’ disposal bowel could be a problem with this. Anything l eat goes straight through me - does not touch the sides - so my life is very loo orientated. l have to take meds to bung me up if l need to plan to go out.

Before my mobility gets any worse - if it does - l shall hope for a colostomy. This is so l can keep some independence and self-esteem. l do not want to have to rely on others to help me with B&B problems. And l have promised my daughter!!! She said she doesn’t mind cleaning out the stables and picking up dog poo off the lawn - but she draws the line at cleaning up her old mum. Fair enough!

l drink 2.5 litres of water a day to keep all flowing well. And as l follow the Coimbra Vitamin D Protocol for MS - it is part of this. l need to take magnesium and B2 along with Vitd3. Dairy free diet - and keep off the nuts - as too much calcium causes kidney stones. And too much calcium causes a lot of ‘debris’ in your bladder which can block up the catheter. You can see it in the tube.

Hope this is not ‘Too much information’ - but l know after 35yrs of PPMS that B&B problems are possibly the worse thing we face.