This week-Rachel from Rocking2Stomas teams up with premium catheter supplier Aeroflow to talk honestly and openly about improving life with a long-term catheter. Take it away Rachel…

There seems to be a lot of information on the internet about all the different types of catheters and products that are available. However, there seems to be very little about what it is actually like to live with a long-term catheter or suggestions on how to improve your quality of life with one.

As you may be aware already the world of catheters can be quite confusing and mindboggling. Aeroflow is always keen to get real patients experiences when using their catheters-and stress that actually life still goes on with one! Firstly, I wanted to briefly describe the different types of catheters that are available and talk all about my real experiences of living one.

The 3 main types of catheter are:

 

Intermittent catheters – this is a way to empty the bladder if urinating is difficult. It involves passing a catheter, through the urethra and into the bladder at different intervals during the day. You or your caregivers are usually taught by a specialist urology nurse how to do this.

Indwelling catheters – This is a catheter that stays in the bladder and can either go through your urethra called a urethral catheter or through the gap between your supra-pubic bone called a suprapubic catheter. These types of catheters are also called long-term catheters.

External catheters – This is mainly a condom catheter and is placed outside the body only used for men and the device looks like a condom. This device is not used as much as the other types.

For the purpose of this article, I am focusing on long-term catheter use either with a urethral or suprapubic catheter in place.

Life with a long-term catheter can be a challenge at first. It takes some time to adjust to this new way of urinating and all the products that go with it!

At 21, I had my first suprapubic catheter and I ended up having this for 7 years. The first few years I struggled with acceptance and I seemed to be very resistant. Last few years I realised that in order to still try and live life to the best of my ability with a catheter that I needed to find a way to improve my life with one.The following suggestions have all been tried by myself, throughout the years. A catheter can affect you physically and mentally but there are some small things you can do to reduce possible complications and to still partake in life.

1. Change the urinary collection bags or valves every 5-7 days

With a long-term catheter, there are different options to collect the urine. It is important to try and change the drainage bags every 5 to 7 days if you are able to because this will help reduce the risk of infections.

One of the biggest problems with having a long-term catheter is catheter Associated Urinary Tract Infections (CAUTI). Having a catheter can introduce bacteria into the bladder and cause a urinary infection. The longer the catheter stays in the bladder the greater the risk of infection. Depending on your care plan and team it is best to try and have the catheter changed every 4-6 weeks. 

One of the best things about Aeroflow is that they offer monthly reminders and deliver everything to your door-which to me is incredibly important on keeping on top of changing things to avoid these types of infections! After all, life goes on and we can all be forgetful at times! 

2. Keep Hydrated

When you have a long-term catheter it is important to drink plenty of fluids to keep the urine flowing. The recommendation is 2-3 litres per day which can help prevent infections, blockages and sediment forming in the tube. If the urine is clear and looks like water with a hint of yellow then this is a sign that you are drinking enough. If this is darker and more concentrated then you will need to drink more.

Cranberry juice or cranberry tablets can be used to help prevent infection and reduce the calcium in the urine that can cause blockages. However, there seems to be some contradictory information and not everybody with a catheter may agree. There seems to be a split decision on this. I used to drink cranberry to help prevent urinary infections even if it didn’t help prevent the urinary infections I felt like I was doing something to help prevent them!

3. Gentle exercising with a catheter

Sometimes when you have a catheter it can be hard to exercise especially if you have painful bladder spasms. However, for me it is important to try and partake in gentle exercising whether this is a walk around the block, swimming or a gentle aqua aerobics class. Exercising will help keep things moving but it can also help mentally. Try and find something that works well for you but start off gently.

I used to find swimming helped with the spasms and made me feel better all-round. I find being in the water is the only time where I do not feel ill. Sometimes I used to go swimming with a flip flow attached but towards the end, I just went in the water with my leg bag (I asked permission beforehand). This allowed me to be in the water longer.

4. Find a catheter that works best for you

There are lots of different types of indwelling catheters out there that are made slightly different. It is important to know that there are other options if you do not get on with the one that has been inserted.

For years I was unaware that there were different types of catheters available and I finally asked my physician and nurse if we could try a different type. I was struggling with lots of infections and eventually, I was given a silver-coated catheter that I found did help reduce the infections.

An example of this is the Bardex infection control 2-way foley catheter from Aeroflow that reduces bacterial adherence and minimizes biofilm formation. These are clinically proven to reduce the catheter-associated urinary infections by having a silver Hydrogel coating! However sites like Aeroflow have a huge range (which if you’re in the US, can be claimed through your insurance) so don’t feel as if you just need to settle on the first one you try!

 

 

 

 

5. Use a lubricating gel or local anaesthetic to help with the bladder spasms

One side effect of having a catheter can be painful bladder spasms. Some people may have this daily but others may only have these spasms when they have a urinary infection.

When these spasms hit I found a lubricating gel or local anaesthetic was extremely helpful. I would either put it on the supra-pubic opening or around my urethra to help numb that area. I found this helpful as well as heat pads, regular baths and pain relief.

6. Still, travel with a catheter

I still enjoy travel-even with my catheter!

Travelling with a long-term catheter can be a bit intimidating. Having a catheter shouldn’t stop you from travelling unless you have other medical conditions and have been told not to fly.

Having holidays can help you feel that you are still living your life and that’s the most important message I wanted to mention in this article.

The key is preparation. Some suggestions to help make this easier are:

• Contact the airline beforehand

• Make sure you have doctor documentation that you will be carrying catheters and drainage bags with you.

• Certificate from your supply company that says you have a catheter, will carry supplies and can be stamped by your GP. Aeroflow have dedicated reps you can contact for this.

• Pack half of the supplies in your suitcase and the other half in your hand luggage. This is in case the suitcase goes missing.

• Medications are in your hand luggage

• Bring more supplies than you need.

7. Avoid constipation

If you have a suprapubic or indwelling catheter it is important not to become constipated. The bowel lies close to the bladder and pressure from a full bowel can result in an obstruction to the flow of urine down the catheter and sometimes urinary leakage through the urethra.

A diet consisting of plenty of fibre will prevent constipation. Some examples are: fruit, vegetables and wholemeal grains. If this continues to be a problem after trying a high fibre diet then please see your clinician. They may suggest taking a laxative to help prevent this.

8. Start a gratitude list

 When you have been chronically ill for a long time it can be easy to focus on what you have lost rather than what you have right now.A gratitude list can help with this because even though you are ill there are still some things in the day that you can be grateful for.

For years I was in self-pity and struggled to accept my catheter and illness. I could not get out of the dark hole I was in that felt like I had no future. One of my friends suggested every night to write a list of everything I was grateful for that day. At first, when she suggested this I felt angry thinking what have I to be grateful for. However, I begrudgingly started to do this and something changed in my thinking. Instead of finding the negative in the day I was sub-consciously seeing the positives. This change made living with my catheter and illness easier and all it took was to write a list.

Now, I have even found gratitude for my ill health because without it I would not have received all the lessons I have learnt and met all the amazing people that are in my life!

9. Set Small Goals

This technique can be extremely helpful to help find a sense of purpose again. Start off by setting small and manageable goals that can help build your confidence up. For example, doing the dishes, starting a hobby or maybe try meditating for 10 minutes can be examples of some small goals. Setting goals can help with motivation and can instil some hope for the future. The key is to keep them attainable.

So these are just some suggestions that I found helped improve my life with a long-term catheter. I hope you find them helpful and I would love to hear what has helped you? It takes a while to adapt to living with a long-term catheter but with some creative thinking, you should be able to continue doing some of the activities that you did before having a catheter!

This is a sponsored post with Aeroflow- do check out their incontinence supplies here.

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