Catheter woes and what is a supra-pubic catheter??!!

eds awareness again

No one said that having a catheter was easy, and I’ve been under no illusion that this was the case. However my bendy body doesn’t seem to think that having a catheter is bad enough on it’s own, and so this past week and a bit I have had to call the nurses out four times and had to have my catheter changed four times so far!!!! Sunday night was just after the third change (which I’d had during the day) and I was lying awake wishing I could literally rip my bladder out, and I really mean literally too not figuratively like some people mean when they say it!!! I wasn’t sure whether to take my catheter out because I was so scared that they’d make me wait for the op without it in, if they did I would go back to being almost totally incontinent again. In the end I did have to take the catheter out as after nearly 2 hours in agony with bladder spasms it finally slipped so badly again that I could actually feel the balloon part that holds in in place. It was a nightmare, it meant that I was then up for the rest of the night making regular trips to the toilet to stop me becoming too wet. That has in itself set off a whole week’s worth of flare because I have done too much! Well I thought that it was getting to the stage that I was going to have to give up until my op, thankfully the nurses understood and just asked the doctor if I could have any tablets to help with the spasms. The answer came back as no, my POTS stopped me from having the tablets but they made the decision that I was to come off the flip-flow valve (which is a valve which stops the flow and allows your bladder to fill up) and have my bag on free drainage full time because the spasms come when my bladder fills up. If you don’t know what a bladder spasm feels like, think of a balloon……..squeeze the balloon as hard as you can……..now imagine that being your bladder!! That is basically what it is, when you have them they are eye watering (or they can be) and is just so so annoying when all you want to do is sleep!!

Fast forward 4 days and it’s Friday now, I’ve just got off the phone from the hospital and because of all the issues they’ve brought my operation date for my supra-pubic catheter forward. I’ve got pre-ops next week and then if dad is able to take the day off from the school that he works in, then the 22nd June see’s me admitted for my operation. I will be having it under general anaesthetic because I am a higher risk patient, which to be honest I prefer as I cannot bare anything like this happening. I cannot be awake or aware of what is going on while they are doing it and with my EDS local anaesthetics really don’t work well on me. I have to say that yes I’m glad that it’s happening, but it’s not without a great deal of trepidation. I always always question my decisions and always spend the time until after I’ve recovered doubting myself. It’s just who I am I guess.

So a supra-pubic catheter, what is it? Basically it’s a catheter that will drain my bladder but instead of going in through my urethra it will go in through a hole in my skin.

A suprapubic catheter is a hollow flexible tube that is used to drain urine from the bladder. It is inserted into the bladder through a cut in the tummy, a few inches below the navel (tummy button). This is done under a local anaesthetic or a light general anaesthetic

Catheter picture

So I shall be rather busy over the next few weeks as I have a number of other appointments too. I will try and keep you up to date with what’s going on and how it goes.

I’ve been rather busy crafty wise too, and trying to learn how to take better photos for here. Hopefully I will start sharing those with you when I can get round to taking the photos and putting my knowledge into practice. Until then I need distracting from the stress of my op, so please share with me your tips and suggestions for how to keep my brain from stressing me out to the point of making me ill again!! Anything that you do to help you prepare for ops or anything like this that causes you stress. Any tips and hints will be very gratefully received!!

Update………I wrote this at the beginning of the week with every intention of posting it. Unfortunately I’ve had a really bad week and didn’t get round to it. The week has been full of sensory overload, a smear gone wrong and was supposed to be ending with me having pre-ops tomorrow (Friday) but I’m not sure what I will be able to do!! You see I am a big believer in having smears, I think they’re really really important however with all my usual problems it is never that simple!! Yesterday was the absolute worst one that I’ve ever had, after nearly 30 mins of trying she had to abort and said that she couldn’t complete it!! I have to go to the GP so that she can work out my risk factors and send me to a specialist to do it instead. The problems however haven’t ended there, I think that all this caused another catheter slip and after getting it in with no issues (albeit at 9pm at night which, because of my insomnia is usually my bedtime) they left with it draining correctly. Off to bed and the spasms started, crippling eye watering spasms which I managed to cope with for about 30 mins and then yet again my bladder had an almighty spasm and lo and behold my catheter slipped again. So that was in around an hour, a new record I think!! I will now have to call them out again hoping desperately that they’ll put another one in, because although these problems are awful they are a great deal better for me than the incontinence I have without. I’m in for another sleepless night now as I will have to get up in a moment and do my hourly trips to the toilet. I’m waiting for dad to come up though so that I hopefully won’t disturb anyone!! Spasms are awful, and I think that something may have caused a problem as I’m also bleeding. Oh I do sometimes wonder what it is like to be “normal”.

Now I might have had a terrible time with my smear test but as I said I still believe they are important to have. It’s usually fairly straightforward and could save your life, so if you are due or overdue for yours….please don’t let my experience put you off and book it as soon as you can.

This campaign happened a while ago and it’s important to talk about these sorts of things. The more we normalise it and bring it out into the open, hopefully the more people we help and the less that the cervical cancer numbers will rise.

Further update, I have to keep my catheter out for a few days which sucks. They say that because my body is expelling it I have to have a break!! So two days without and then hopefully I can try again!!! Not a happy bunny. Had my pre-ops today and it’s looking like I’m far too high risk to be a day case so I’m going to be in overnight……..sensory tips appreciated as no mum overnight!!!

So I have to say I need a bit of a pick me up at the moment, what are your top tips for cheering yourself up??? Have you got any tips for overnight stays in hospital again???

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6 thoughts on “Catheter woes and what is a supra-pubic catheter??!!

  1. Top Tip 1 – download the game “Crissy Crossy ” on your phone. It’s a word based quiz and quite addictive. Plus as you have the letters in a circle, even when you have memory issues or brain fog the game is enjoyable.

    Top Tip 2 – get a good friend to take you for a coffee with their 4 legged friend tagging along. Then get cuddles and kisses from 4legged cheeky monkey.

    Top Tip 3 – when annoyed/angry and peed off, just sit and think of as many swear words you can.

    Finally, if your Dad can’t get the time off, then you must contact friend above who will take you.

  2. I imagine it must be a relief to finally have a date for your op. I don’t have any tips I’m afraid, I just tend to try and keep myself distracted – movies, writing, reading, whatever it takes.

    As you mention, after I had my SPC put in I doubted my decision for a few days, especially as it was quite painful but now, 3 weeks on from that, it’s not that bad and has been a life changer. I’ve had a couple of issues with it blocking but those are easily sorted (so far!) and things soon start moving again.

    For overnight stays I take my kindle and laptop, a notebook and pen and some snacky food stuff, although after the op I didn’t really eat much, I was drinking more than anything else to try and flush the blood through asap.

    Fingers crossed for you and I wish you all the best with it. Here’s hoping it makes a huge positive difference in your life. x

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