Tag Archives: indwelling catheter

Catheter Chaos • Boots Discrimination Discomfort…

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The Catheter just came out again…

It lasted only 6 Days, this time… 😳😔☹️

It’s so annoying, having to undo all the straps and sort through all the tubing, and whatnots, when disposing of a shoved-out Catheter.

Then there’s the Dragon of Disappointment, and all the other damn “emotions” and crushing, suffocating “feels” that go with it.

Certainly makes me more determined to get a good meeting out of the Suprapubic Pre-Op Hospital Appt. next week

Catheter tubing, leg bag & Night Bag
The Reality of the Indwelling Catheter

I really feel… horrible… Betrayed, almost, by the damned thing. Strange, but true!I thought I could at least make it through another month, but apparently not. My stomach is all knotted… I feel something… crushing, twisting, fiery, scratchy, bitter… upset…😢

I am not in the right space for this to happen along with everything else… 😖😖😖

I was miserable enough without this…


It’s been spasming all day. No doubt due to all the stress I’ve been under. Or… maybe more like I put me under… 🤨🤔… 😒😒😒

Between fearing the arduous and overwhelmed task of flipping the mattress, and the issues I’m having, now I’m arguing with Boots about whether or not people in wheelchairs should be treated better than naughty puppies, I’ve been in a lot of depressive misery today.

Boots made me feel small, pointless, miserable, undignified, insulted, belittled… Vulnerable… I’ve been in scared and sorrowful misery all day.

But then I got some balls and got going with sorting out the mattress, because there was No Way I was sounding another night like I had been, in that much pain. I’d had enough painful nights and nightmares, and last night was the final straw.


But I guess it was too little, too late, and the stress of all of it was too much…?

Either way… The bastard thing is out again. 😒😒😒😒😒😒

Catheter tubing & Night Bag
This is what it should be doing… As opposed to shoving itself out of me…🤨😒

#upset #frustration #fatigue #exhaustion #fibroplegia #dragondisappointment #irritated #sad #pain #dignity #suffocatingfeels #catheter #fibromyalgia #anxiety #aspie #healthcare #alexithymia #stressed #dismal #depression #resentment #helplessness #disabilityPowered by Journey Diary.


Catheter Conundrum…

This catheter situation is starting to get a little beyond out of hand. Yesterday, it came out twice. Within 8 hours of the first one being inserted, it was out. And I thought 16 hours was being ridiculous…

In the early hours of the morning, the night staff from the District Nurse office came to reinsert it. Fortunately the people there are lovely. And patient. I have to call them out so frequently (or go to their clinic, if I am able to) it’s beyond a joke – it stays in for 24-72 hours mostly.

img_0887The one that first came out yesterday had been in for 5 days… I don’t know what the secret was. But strangely enough, I had no sensation of it coming out (there’s usually a sensation of a stun gun that has a very sharp pointy end stabbing me and shocking me). The one that replaced it was in for 8 hours… so go figure. I barely felt that come out, but there was a bladder spasm at the time, and I vaguely felt it being shoved out.

To put into context, they’re supposed to stay in generally 8-12 weeks.

It comes out with the balloon intact. A filled 10ml balloon at least 3-4cm [or about 1.5″] in diameter. I can’t even tell you how teeny a urethra is, but it gets shoved out of it. Sometimes it feels like my body is trying to lay an egg… Every time this happens, that is what happens – and yet no one has done a bladder scan or checked how much damage is being done to the bladder and urethra by this constantly occurring. I imagine it’s a lot.

The worst pain comes with bladder spasms and what I term “Retention-Release“. This means the bladder goes into retention until the spasm that causes it is unable to keep the pressure on the full bladder. Then, when it cannot keep it up anymore, it releases… all at once, and causes horrible pain. Now, though, it’s through the roof. And if I can feel it, and it’s unbearable, then it must be bad.

This morning the bladder has been going into Retention-Release badly. There was less than 100ml in my night bag (attached to leg bad, which was empty). It wasn’t until 11:25am that it overfilled and released (after coffee, a diuretic). And it hurt.

It released about 300ml at once. It was agonising. It feels like… a stun gun with a very sharp and pointy end both stabbing you and electrocuting you at the same time. It’s like that constantly right now, but when it released, it’s unbearable. If I already didn’t know what utter agony was, I’d be screaming. But I do, so I don’t.

My urethra now feels like it’s being tasered to death. It is well over a 10 in agony. And as someone used to living with agony 24/7 for five years, I can tell you it is horrific if it affects me that badly that I care and feel the pain.

I cannot sit on it. I literally cannot stand, so that’s out. A little bit of being raised on my kneed on all-fours like a baby helps a tiny bit, but it’s not like I can keep myself balanced there forever, it’s not like my legs can keep me up… So I’m stuck with it.

I feel dizzy and sick (as in seriously nauseated) by the agony. Lying down doesn’t help either. I’m stuck with it, and I probably will pass out from it. And I’m home alone with no one to help me.

Paraesthesia is no joke – it is my pain, my agony, what causes screaming both inside and out. It’s the same intensity and agony as if you had been crushed and fallen several stories from a building and survived. But if you did that, you’d get Fentanyl, Ketamine, some serious Morphine. What do I get? Tramadol, and if I’m lucky some soft-crap Oramorph (just 10mg).

The formally-empty night bag now [at 11:48am] has over 600ml in it.

Come 12:17pm and it starts again. It floods. It comes out. I’m vibrating from shaking.

I’ve had to agree to keep the catheter out as long as possible now, up to 24 hours, or more, if possible. I’m not seeing it… But I agreed to try. Doing it though… Well, I’m not so sure about that. My bladder is still in Retention-Release. It’s very painful when it does release (all at once). I’m not going to be drinking much now. How can I, if the consequence is, effectively, wetting myself? In a grown-up nappy, sitting on a incontenence may for babies? And nappies that I have to change ever couple of hours?

The only reason I’m even agreeing to this is because my current Fibro Flare Up is so bad I cannot move or go anywhere anyway – otherwise I wouldn’t be able to go anywhere because of this, and I find that unacceptable.

I’m highly anxious. This makes me feel…Gross. Ashamed. Like I’m a baby again. Or a puppy that is still learning… I can’t stop it, I can’t change it, and I can’t help myself… There is nothing I can do about it. It looks like I might not even be able to be catheterised anymore, if this is what it’s going to do. I’m at a loss as to what I can do, and the professionals are at a loss as to why. All waiting for Urology to come and fix it. Except they aren’t listening, or making it quicker.

But that’s my life now… All about the waiting… and, thus, the suffering…

 


Runaway Catheters…

I really have had enough of this – and I really don’t know what I can do about it… Since I left hospital, almost every catheter I’ve been given has expelled itself, with full balloon, within 24-72 hours on average. I don’t know how, and I don’t know why. But what I do know is that once again I am at the mercy of another thing controlling my life. Again.

I can’t really go anywhere anymore – again – because I don’t know when it’s going to come out. I can’t sleep properly because it causes “pain” – strange sensations that are basically very painful to experience but aren’t like normal pain. They’ve given me Baclofen, but the dosage needs to be raised. But I know it’s not going to help that much with this (it’s great for Fibro spasms though)… From some of the sensations I get with them, it feels like they’re just not going to be tolerated… and my system will do whatever it can to simply be rid of it. And it does a pretty good job of it, too.

I should be seeing a urologist ASAP, but we’re talking about NHS waiting lists here… I’ll be lucky to see one before I take out my pension (which will be at age 85 at this rate…). I probably require a suprapubic catheter… though apparently sometimes injections of Botox into the bladder is occasionally used to stop this from happening too… Not the most pleasant idea, either way. But if it stops this? I’m all for it.

I’ve been through countless catheters in the last three or so months. The District Nurses don’t know what to do with me – except, just put another one in, of course. This one was by far the worst one though – it was trying to come back out from the moment it was put in. Sometimes I do wonder what kind of trauma has happened to the urethra, too… Flushing out rather large balloons constantly almost every other day for weeks cannot be very good for it. I know it hurts a lot to pass water when there’s retention buildup – which is quite constant now, for some reason. Then the force of the water expelling dislodges the balloon – and with every one, it wriggles more and more loose until it expels once again.

Regardless of how much longer can I take this – there really is the question of how long my urethra and bladder can take it… It’s going to end up harming them badly, shoving that balloon out several times a week. You’re supposed to average one catheter every three months, not three every damned week, after all. It must be causing great irritation. And I can’t manage without one. Oh, yes, that ship sailed a long time ago now.

If the District Nurses gave out Air Miles, I could go to the damned moon and back, I’m sure. I’d definitely be eligible for a free pen, at least. Or maybe a keyring.

I can’t even find any other reference to such a thing happening elsewhere. No reference to it online by other people, nor on medical sites or even where there is advice on catheters. It just isn’t mentioned. Not expulsions that happen nearly… Every. Single. Day.

It also doesn’t help when you have places to go, appointments to keep. Or a life to be lived. I have only just returned to some form of an existence after spending at least eight months firstly bedroom-bound, and then hospital-bound. I was expecting to be able to have at least some freedom to do a few things that I pleased. But no… at this rate, we’re back to being bedroom-bound again.

I am again not even certain I will be able to realistically make it to the appointment I have tomorrow, quite far away, for a new wheelchair consult. Well, my first wheelchair with them, because it took them bloody forever to get to me on the waiting list… But that’s a different type of gripe…!

I can’t realistically go out in the car for well over an hour each way, plus appointment time, without a catheter. If the next catheter only lasts 24 hours I’ll either not be going or I’ll be out there in the middle of it when it finally gives up the ghost.

I really can’t work out just how the hell it’s managing this… The thing just quite literally fell out this time. No spasm, no massive flow of water… It just fell out. Just like that. I’m going to go out on a limb and say it may be getting worse….

 

 

GrumpyBear

 

IMG_1109

… Urgh…

 

 


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