Let’s Talk About Catheters.

To celebrate the launch of our new catheter nurse service we wanted to dedicate a space where we talk about all matters relating to catheters. Catheter patient, Leanna Benjamin talks openly about what she wished she had known about having a catheter. 

Firstly let us introduce you to Leanna, who has lived with multiple chronic conditions for over 20 years and has had an indwelling catheter for around 12 years now. Leanna has been very open about her experiences of living with a catheter and has written a great piece for the Bladder and Bowel Community to help others who may feel daunted at the concept of life with a catheter.

10 things I wish I was told about catheters - Leanna's Story

10 things I wish I was told about catheters – Leanna’s Story

“Catheters can be embarrassing, and wearing one often leaves people feeling lonely. I hope, after reading this post, you will have picked up a tip or two that can make your life easier. Knowing that someone else had similar experiences would have made me feel less lonely when it happened to me. I didn’t get any leaflets about catheters, and I received very little advice. 

Let’s get informed!

But, before I continue, I guess I should introduce myself. My name is Leanna Benjamin, and I’ve been living with multiple debilitating illnesses for over 20 years. I first realised that my health was deteriorating after a bout of the flu when I was 18; but it took four years to be diagnosed with ME (Myalgic Encephalomyelitis). 

As my condition gradually got worse, I noticed that I was struggling to control my bladder. It had always been weak, but up to this point it had at least been manageable. Now, my mobility became severely affected by the ME, which in turn exasperated my bladder issues.

My GP referred me to a urologist, who sent me for a variety of tests. I met an amazing doctor, who was incredibly supportive and reassuring. The tests were not painful, but they were uncomfortable. I think the worst part was that I felt really embarrassed to be in my late twenties and dealing with something that most people associate with old age. 

Luckily, I’m blessed with some really great friends, and they helped me a lot during this difficult time. One of them was even with me during some of the urodynamic examinations.

Botox and talkative bladders

The doctor said that my bladder could only hold a small amount of liquid (20ml) before it began to spasm. On the scans, it looked like my bladder was smaller than it should be. The urologist, however, explained that the size was actually normal, and that the real problem was that the nerves inside were hyperactive. This meant they were constantly telling my brain to empty the bladder, which, consequently, was never allowed to relax, fill up completely and empty in a controlled manner.

My urologist talked me through my options, and we concluded that a permanent surgical solution wouldn’t be ideal for me. But I was a good candidate for Botox injections, so we decided to try that option. These injections, which most people probably think of as a facial wrinkle remover, are put directly into the bladder whilst you are under anaesthetic. 

Botox basically calms the nerves down, making them less talkative. One of the side effects of the injections is that the nerves go from talking, without stopping to take a breath, to refusing to say a single word. This leaves you with a bladder that cannot empty itself without assistance. Which is exactly what happened to me. Then the continence nurse suggested I try to catheterise myself.

Intermittent Self Catheterisation (ISC) means that you insert a single use catheter into your bladder at regular intervals throughout the day in order to empty it out. I described it as the manual way of emptying the bladder while the automated system is offline. This is an option I suggest you discuss with your consultant, or your continence nurse, but it’s not for everyone. Don’t be disappointed if it doesn’t work for you, though. There are other options.

After I’d had a series of Botox injections, we agreed not to continue with them. Although there had been some improvement, my body wasn’t really reacting the way it should to them, and I was having more adverse reactions. The only option left for me at that stage was to have an indwelling catheter fitted. 

The catheter that changed my life

There are two ways a catheter can be fitted. There is the suprabpubic catheter, which is surgically fitted just under your belly button; and the urethral catheter (or indwelling catheter) that a nurse can fit either during a hospital clinic or at your home. I’ve had the latter for about 12 years now, so I guess it’s fair to say I’m a little bit of an expert. And that’s why I agreed to write this article. 

I wanted to share the information I wish had been available to me when I had my first catheter fitted, Hopefully, my tips can help someone else avoid some of the pitfalls I’ve encountered. I think it’s important to share how I felt about having a catheter. After years of dealing with the embarrassment of unexpected leaks and bulky pads, having a permanent solution to my incontinence problem was exactly what I needed. 

What I hadn’t expected, however, was that I’d feel as miserable as I did. My body had changed, and I really didn’t like it. For a long time, this was my shameful secret and it made me feel all alone. Thankfully, I have since learnt that it’s nothing to be ashamed of. It’s simply a disability aid and, like anything new, it may take a little time to get used to it. 

My first tip is to be kind to yourself and don’t keep this a secret. Talk to your family and friends, or speak to your continence nurse about support groups in your area. When I left the hospital with my newly installed catheter, there was so much I didn’t know. My sister Frances stayed with me for a few days, and during that visit she had to help me empty the leg bag. We really weren’t prepared for this new reality. 

The lessons I’ve learned

I was unable to get out of bed, so my sister emptied the bag into the plastic jug I had in the kitchen. Not an ideal solution, but it worked. One day, while she was emptying the bag into the jug, she said “my sister can pee in a cup.” We looked at each other and burst out laughing. In that moment, Frances reminded me of how I normally deal with difficult situations: With deeply inappropriate humour! 

We proceeded to come out with terrible jokes that week, and slowly my deeply depressed mood began to shift. This is why I keep saying it’s important to share your experience with someone you trust. Because they can help you see things in a different light.

And now, let’s have a look at the ten things I really wish I had known 12 years ago:

  1. Incontinence and catheters: Everyone’s experience is going to be different when it comes to catheters, because there are so many different reasons why we need to use them. Personally, I thought having a catheter would mean there would be an end to the ‘accidents;’ and that I would be able to go out feeling completely confident. While the number of ‘accidents’ has, indeed, been dramatically reduced; leakages can happen due to spasms or if the catheter gets a kink in it. This is a twist, or fold, which prevents the catheter from draining properly. My advice is to always wear an incontinence pad. It doesn’t have to be a large one, as it’s usually small amounts of leakage to deal with. I always travel with a ‘maintenance kit’ that includes wipes, a pad, a change of underwear, a scented bin liner and a syringe of instillagel lubricant.
  1. Catheter leg bags: When I first started using catheters, I thought there was only one style of bags. I have, however, discovered that there are different bags available on the NHS. You just have to ask. In terms of the leg bags, they have a tap at the end so you can easily empty it. Initially, I got the flip tap bags, but I found that they could easily open, so I moved on to the leg bags with the slide tap. I have been using them for over five years now, and I’m very happy with them. The leg bags also come with different lengths of tube and that all depends on where on the leg you prefer to strap the bag. Personally, I prefer the short tube leg bags, to avoid the tubing getting kinked and causing the catheter to bypass. 
  1. Catheters at night: You will need a bag that holds a larger volume during the night as the leg bags tend to hold 500ml and the night bags hold two litres. You can use the night bags during the day too, if you’re unable to get up regularly, but I find they are harder to manage on your own. Night bags are better with a stand, as this makes sure the bag stays in one place whilst you’re sleeping. The NHS (in Leeds) only provide the white metal stands, but there is a blue foldable model that you can buy online that is brilliant for when you are travelling. There are two types of bags, a reusable one and a single use bag. My advice is if you are getting frequent UTI’s request the single use night bags as I have found that helpful.
  1. Straps or sleeves? Your leg bags need to be held in place during the day, otherwise they can get caught and cause immense pain. Believe me when I say it will bring tears to your eyes if you accidentally catch your catheter on something. Most leg bags come with velcro straps that hold the catheter in place, but I struggled with them. They either got tighter throughout the day or had the opposite effect and became so loose they no longer did their job. Thankfully, I explained my problem to one of the nurses and they introduced me to the sleeve. It’s a bit like a support bandage you would use for a sprained wrist or ankle. The only problem is that they are only available in white, and sometimes that can show through clothing.
  1. Swimming with catheters: Having a catheter can feel restrictive at times, but it’s surprising just how much you can do. I’ve wanted to use a hydro pool for years, but I thought that was out of the question. Last year, I was blessed with some much-needed respite and the centre I went to had a hydro pool. I discovered that, instead of using a leg bag, you can simply attach a flip flow valve which will allow you to go swimming.
  1. Sex and catheters: I’ve been asked so many times if you can have sex with a catheter. I debated whether I should answer the question here, but I do believe it’s important. Especially for women who may feel body conscious since having a catheter. Yes, it is possible. It can be problematic, though, so speak to your nurse for advice. And remember to laugh – a sense of humour makes it so much easier to deal with situations that can be embarrassing.
  1. Catheters and UTIs: Initially, I thought that having a catheter would reduce the number of UTIs I got, but that has certainly not been the case for me. Your doctor can prescribe a course of antibiotics that you take as a preventative measure on a long-term basis. This option isn’t ideal for everyone. Drinking water regularly (at least two litres per day) can help reduce the number of UTIs. Taking cranberry capsules that you can get from the chemist’s, or a health food shop, may also help.
  1. Catheter care advice: Indwelling catheters are normally changed, by the district nurse, every 12 weeks; and the leg bags should be changed at least once a week. I have discovered that regular bladder washouts can help making sure the catheter drains properly but again speak to your consultant or continence nurse about this.
  1. Are catheters painful? The honest answer is that they can be. Especially when you first have them fitted, but the discomfort shouldn’t last too long. I endured severe pain for over a week before seeing my GP who said it was because I wasn’t used to it. Later that day I went to the hospital as the pain had gotten significantly worse. As it turned out, my catheter wasn’t properly fitted and I had ended up with an infection. It’s rare that this happens, but unfortunately it did happen to me. If you’re experiencing a lot of pain for more than 24hrs – seek medical advice! 

Sitting for a long period of time can cause discomfort, so it’s important to either move positions and/or have a comfortable memory foam cushion. Speak to your continence nurse regarding pain relief such as instillagel. I have found that heat therapy works really well to calm my bladder down; especially if the spasms are causing the catheter to be expelled from the bladder. There are medications that can be used to help ease the spasms too, so seek medical advice and don’t suffer in silence as I used to.

  1. Catheters and clothes: For years, I only wore black trousers just in case I’d have an incident. Now, I enjoy getting different coloured trousers and, occasionally, I even wear long skirts or maxi dresses. Wearing fitted leggings under floaty dresses or skirts really helps to keep the leg bag in place.

Independence

Having a Catheter has made my life easier, its not without its cons but hopefully I have made some suggestions that will help you navigate them. You will come to find that the pros outway the cons and you can live a more active life.

Leanna’s decision to talk about her experiences comes from having a lack of resources and information available to her when she first had a catheter fitted and she wanted to pass on the knowledge that she gained through living with a catheter long term.

A big thank you to Leanna for sharing her experiences and patient expertise, we hope that you have found this information useful. If you feel you need further advice or support about your catheter, remember that you can contact our catheter nurse service and arrange an appointment for a review.

If you want to know more, our experienced nurse, Val answers our community’s most-asked questions on catheter care.