Catheters And Me: A True Story From 21 Year Old Gemma

By Gemma Harenburg:

So the story really begins since I came home.

The background you ask?

Well, let me explain. Although first of all, I would like to let you know that I want this article to be positively working towards reducing the stigma that is focused around young people, young women, and the unexpected results of using a catheter. Now. Storytime.

Back up a few years and I had moved away from home. I never really had any bad health problems until I left home, unfortunately, it all went downhill from there.

I started to come down with a bladder infection and saw a GP, which resulted in me being given antibiotics for a UTI.

The pills, unfortunately, and quite obviously being that I have called them pills, were in a pill form.

Now at that point, I couldn’t swallow pills without choking. So planning on reordering the liquid antibiotics I carried on with life.

Until my fever kicked in later that night. My temperature spiked and I called the hospital because I knew deep down, my gut feeling was right. There was something wrong with me.

They sent a taxi out to me because of the lack of ambulances and after a semi-lengthy wait in A&E from what I remember, being that all I really remember was peeing on the chairs of the waiting room in the hospital because my (now EX) partner loved to take the mickey out of me for that.

Then everything goes fuzzy and dark.

I remember walking in the majors A&E ward finally, stumbling and missing all pointer cues of where I was meant to go as if I was a zombie. I knew where I was but nothing made sense.

I remember my partner at the time prompting me to reply as the nurse chatted to me, determining my name and age and what was wrong with me as we strolled through the corridor into the bedded area of the A&E ward.

I was already wondering off. Out of it. I hadn’t even noticed she was talking to me.

I ended up spending one whole night in the majors’ ward next to resuss. It was horrible. I had a drip in and I don’t remember much apart from one scene that plays in my head.

It was dark but a few lights were on at the nurse’s station I think. A nice but seemingly emotionally distant nurse came round to do my ECG.

And then …. all I remember is convulsing. The shivers from my fever making me believe I was so freezing cold I thought I would surely die. A vague memory of my heart rate and temp being deemed too dangerous to send me home as I listened to two nurses chat outside my cubicle curtain.

Now you may not think that had anything to do with this article. But believe me, it does.

Well, I think it does.

Because with even as much encouragement as we can get, that doesn’t change the fact that whether you have an indwelling or intermittent catheter, suprapubic or Foley, you HAVE a catheter.

And that’s not the end of the world.

I am in NO way WHATSOEVER implying it is.

In fact, I find it quite freeing to have a catheter and have gotten used to being the girl with the catheter.

Even though I am the only one who thinks of me like that any more.

I think everyone else sees me as Gemma.

It is only ourselves and our reflections who judge us so deeply as we feel they do; please do remember that possibly semi-important info.

But the point here is, and sorry for rambling. You have ONE body, and although we have treatments, we have new organs being developed and Kidney transplants, they all have ONE thing in common.

YOU.

US.

ME.

We don’t get a brand new body.

So take care of it whilst you can.

If you think you are getting constant recurring UTI’s without any relief from antibiotics. Call a Doctor.

If you think your pee habits have changed, maybe your passing urine more than you were, or less than you were.

Things you might think are embarrassing to mention. Things you can’t find the courage to talk about.

I ask of you, please, talk about it.

Are you finding you have trouble peeing? Having to strain to pee, not peeing more than a few times over the course of the day when you were peeing more than that before? A bladder full of urine can cause a backlog of pressure and urine on the kidneys if it is held for a long time, so see a Doctor. And I’m talking a semi if not full bladder for days.

Chances are you will always be alright, you will always be okay. Treatment is hard and fast for bladders. A catheter in the bladder. Done.

Now that varies from time to time and patient to patient of course. But what I am saying is that we have heard it all before. Us, the community of catheter users, the incontinence of the bladder.

If I had been believed that I had a kidney infection that night if I hadn’t been blocked from appropriate medical care by my then partner, maybe things would have been different.

Maybe I wouldn’t be a 21-year-old, young woman who has essentially no bladder control.

Catheters, however, as the article was actually originally intended to be about, are NOT bad!

There is a wide range of catheters out for you to choose from and healthcare professionals with bladder and bowel service in mind, in my experience and opinion, seem dedicated to finding the RIGHT catheters for YOU.

Women’s catheters will obviously be shorter due to the shorter urethra than men, however, men can sometimes have a penile sheath if that is appropriate.

There are so many discrete female catheters I was amazed, from different length catheters to different circumference catheters, easy hold and hygienic catheters, speedicaths with built-in pee bags, easy attachable one time bags with a one-time use valve for disposing of the urine.

Pink and purple packets, blue lipstick shaped tubes with catheters in, discreet delivery.

There really is NO need to be afraid.

Now when I had my first urinary catheter fitted, I was taught to do the intermittent self-catheterisation myself, and although I found the idea of a woman looking at me incredibly shaming and embarrassing and dreaded the thought of the day I was taught to perform ISC on myself, it was fine.

Clinical and not intimate at all which is how it should be.

After suffering a couple of non-serious forms of sexual assault at a younger age I.E in my teens I have found it hard to accept being what I consider ‘intimate’ with someone. Anyone. And although a nurse sticking a tube up your ‘pee hole’, isn’t intimate. It was further towards the path of intimacy than I wanted to stray/go.

So I understand that things like self-confidence issues and previous sexual traumas etc. can make a person hesitant to allow someone to come near their bodies in such an intimate manner, however for me, I found that the initial having her prod around at me down there and inserting the catheter and then me learning to insert my own urethral catheters has opened me up as a person emotionally and helped me to understand that there is no shame in our bodies.

This may not be the case for everyone, however, rest assured that there ARE caring nurses and specialists out there and it’s all about YOU. And the pace in which YOU want to take things. Whether it takes 1 visit or 2 before you are comfortable in inserting the catheter, or whether you ask them to pull it out halfway through the catheterisation, it seems to be okay.

This is an intimate procedure and needs sensitivity and caring natures in abundance, well that’s what I think personally.

I have found myself being a lot more able to express to even my family and mainly my parents about the nature of the catheter and learning the names such as Urethral and Stricture have seemed to loosen my own stigma to myself and allowed me to open up my vocabulary to discuss the private matters of my urethra!

Seriously though.

Catheters, when I looked them up, I was told via a certain “Dr. Google” that it could be agonising, and other sites from Google said only a slight discomfort. I shouldn’t have looked that up because it just worried me more.

When I had the first intermittent self-catheterisation performed the nurse had to remove the catheter promptly as I was in agony, like a pain I had never felt before, like someone burning a drill through my bladder and pubis and then pouring acid and cutting it into my urethra as the catheters left my bladder.

The woman said she has NEVER seen someone be in as much pain as I was in. EVER. See. Pain isn’t entirely normal. Chances are it won’t hurt. According to her if I remember rightly, there can be a tad bit of pain or discomfort when pulling the catheter out of the urethra, but generally, it doesn’t hurt.

And I persevered with crying in a ball on the toilet floor after removing the catheter and feeling my urethra burn in a way it never had before. It honestly was worse than cystitis, it was like the eyes of the catheter had sucked the walls of my bladder and urethra to them and twisted them skin first and flesh first into the eyes of the catheter as I removed the catheter out.

However, I persevered and after less than a few days of using the catheters, I was rarely feeling ANY pain at all. And when I thought I would never be able to do it without a mirror and that she was crazy by saying she wanted people to do it by touch, I WAS WRONG.

I don’t even need a mirror now and can most often just insert the catheter with one leg propped up on a chair. I normally use my bedroom as my bladder voiding grounds as I use speedicaths with the pre-attached urine bag and I feel more comfortable doing my ISC there, and you know what? That’s fine.

You can leave the bag down for a minute, screw the lid back on to a speedicath or remove the catheter from a Foley style catheter and night bag contraption if you need to and that’s how your bags work.

Please note, this varies for everyone and all bags and medical equipment used for catheters and the general differences in age and weight and what medical condition means there is a need for ISC in the first place so please don’t take my words as gospel and quote me on them!

I just would like to note that the reason my ISC caused such pain, was determined by the lady and the Doctor who helped me with the catheterisation and the decision to catheterise, that because I had/ have a urethral stricture and cysts in my bladder and possibly on my kidneys, the catheter was essentially working as self-dilatation which apparently some people have to use catheters for any way to remove or cure strictures in the urethra!

Also, the places my cysts are located if there ARE cysts in my bladder, could have just been in the unfortunate spot of by the bladder neck and causing me pain.

My bladder was a special case and even then the ease and the relatively pain-free way I can now carry on life with ISC is extraordinary.

I urge you not to worry.

I feared so much for catheterisation, worried I would be seen as a freak. A 21-year-old girl with a catheter.

But you know what, as I worried my life would change with a catheter.

It did. But in a good way.

What’s worse, a sopping wet pair of incontinence pants leaking through your clothes, spending all your money on said pants and replacing things that stink of urine, or being in control and going to the bathroom to void and remove all urine from your bladder through ISC as you would when peeing if you had a normal functioning bladder or what not?

Now not everyone might be using them for incontinence but if you are, think of it. It might be worth it.

The medical supplies of catheters and urine bags are often hidden in nice handy nifty little boxes and in aesthetically pleasing packets anyway.

My Tips

• Keep clean but not obsessively so
• Keep a clean and new and newly washed towel for using to dry your hands on after washing them before starting to catheterize. I read this tip somewhere and although my BABCS Nurse didn’t mention it, I find it convenient and helps regain a bit of normality to think about the personal hygiene aspect of it.
• Keep wipes handy ALWAYS. Yes. Wipe before you do it! ‘ISC, Front to back, wipe before you pee!’
• Don’t be afraid to ask for the accessories you may need such as handles for the catheters and mini mirrors for easier application of catheters to your bladder/ urethra.
• Remember you can get wet wipes or dry wipes! The worlds your oyster so be a pearl!
• You can get nice discreet pouches for your stuff to do with bladder incontinence
• Even if you only use ISC and do NOT have an indwelling catheter then don’t be afraid to get a urine bag stand! Especially if you use mainly night bags attached to a catheter and then remove them. I found it meant less leaks and easier to focus on inserting the catheter in to the right hole, yes my urethra and NOT my vagina! By having the stand holding the urine bag and keeping the tubing safe it felt like such a relief. But each to their own right? However, do watch out as I found my night bags seemed to bubble from the tubes and so if this happens I advise you to be aware and talk to a healthcare professional immediately if you feel any bubbles.

It could be nothing but better to be safe than sorry. And I don’t wanna be sued!

Thank you ISC. For giving me my life back.

Disclaimer: I am not a medical professional and not all information may be accurate because everyone makes mistakes!

Always listen to your GP or BAB specialist service.

BABS is Bladder and Bowel Services.

Use the correct equipment that your healthcare professional has recommended or prescribed you.

Take Care.
Gemma