THE TRUTH OF LIVING WITH A CATHETER ( part 1 )

so living with a suprapubic catheter isn't as easy and simple as you think. yes, it is basically saving our lives but sadly it comes with its own problems and for a lot of us fowlers girls it effects our daily life.
it stops us doing the things we love like going for a walk, going out with a friend or simply just getting up and getting dressed.

so I'm going to tell you some of the problems you have to deal with when you have a suprapubic catheter.

CATHETER CHANGES

Catheter changes for a few are pain-free but for unlucky ones like me, they are extremely painful. some of us have to have them changed under general anesthetic/sedation and gas and air for me I have to have a high dose of diazepam and lots of morphine before mine.

the catheters can sometimes get stuck like mine and they basically need to be yanked out and I'm gonna say this really ***** hurts and leaves me stuck in bed for hours to days the changes also set the bladder into spasms we often get bladder spasms anyway but a change can really set them off.

so changes are not easy at all. a suprapubic catheter gets changed up to every 12 weeks but most people have it changed around 10 weeks for me its every 8 weeks unless it gets blocked but its different for every person and some people like to have to get the catheter changed when we have infections to 

so that's a little about changes.

SEDIMENT/BLOCKED CATHETER AND SEDIMENT

Now we all naturally have some sediment in our urine but we just don't notice it but with catheters and bladder problems we are more prone to heavy sediment and bladder and kidney stones.

this can cause more infections and sadly block our catheters then we either have to try to unblock the catheter with a bladder wash or have the catheter changed which can be very traumatic. people who do bladder washes normally use just normal saline but some Fowlers girls like me have to use something a little stronger like citric acid washes to try to break down the sediment and clean it off the bladder wall this can for some be very painful I absolutely hate them hurts so much these can be done once a week some have to do them more often.

not every person get heavy sediment / blocked catheters or do bladder washes everyone is different. but sadly for me, I get all of them which can be very draining emotionally especially for us that have very painful catheter changes even just the thought of having a change can make you feel very emotional I get so worried and upset when I'm due a change and panic a lot.

SPASMS

Now bladder spasms most of us fowlers girls suffer from bladder spasms like me severely. there are a wide variety of symptoms of bladder spasms and for different conditions but for us fowlers girls these are just a few of what we get.

•  intense pain that causes nausea
• expelling catheters
•  pain in urethra and pelvis
• bypassing
• trouble with bowls
• severe pressure
• burning in urethra and SPC site
• cramping

for many of us spasms leave us bent over doubled with pain there are medications that can help but they have their own side effects. we all try a wide variety of things to help from medications to squatting and even sitting gone the toilet to which sounds very strange I know but it often does help for me one thing that helps a lot is sitting on s gym ball and bouncing or rocking iv spent many hours on it and most nights iv even tyred sleeping while sat on it ( it doesn't work haha ) bladder spasms have been described as labor pains many many times the pressure and pain around the suprapubic catheter site when spasms are kicking off is so goddam painful I often swear at my bladder and make names up for it but I won't put them on here there not appropriate.



INTIMACY

For anyone with a disability, intimacy can be hard and I openly admit my disability has affected our intimacy. let's face it a tube sticking out of your stomach connected to a bag full of your pee and at times very nasty looking pee and horrible smelly gunk coming out of your stomach just isn't sexy at all is it and really affects your confidence.

then you have the pain. the pain makes you feel so awful, ugly, sluggish and just so not attractive.

but yes sex is not everything in a relationship ( but it helps ) so you have to find ways to be intimate with your partner that's comfortable for you both.
one important thing is to listen to your partner talk to them find what is best for you and just have fun.
many things stop us from been intimate with our partners but we have to find new and adapt ways to be intimate. whether it's going on a date, watching a movie together ( this is my favorite ) or giving each other a back rub.

you have to find what works for you and what is least painful for you.


A SUPRAPUBIC CATHETER SITE

Most people with a suprapubic catheter have some leaking around the stoma after surgery which is normal but sadly for some like me really suffers from discharge around the stoma all the time. some only suffer after catheter changes and some with infections. it can be very embarrassing for us especially if we bypass or leak a lot it can be very smelly at times too.

we have to clean our sites at least twice a day some days more and at times I get extream sensitivity around my stoma which I can only describe as even moving a cm makes me feel like I'm been stabbed by a thousand knives at once and leaves me in tears for hours it burns so much and goes right around my back and I just can't move for hours. we get skin infections around our stomas very easily which causes damages and at times severe pain.

this is very difficult to live with



SO THIS IS PART ONE OF LIVING WITH A CATHETER I HAVE MORE TO FOLLOW BUT AS I AM NOT WELL AT THE MOMENT AND STRUGGLING WITH THE HEAT THAT IS ALL FOR NOW 


XXXXXX