An Unexpected Surprise

When 58-year old Vicky went into a routine surgery, she didn’t imagine that a new life would await her when she woke up. However, complications from the surgery made it necessary for Vicky to start using intermittent catheters – a situation she was completely unprepared for – for the rest of her life.
Although having to catheterize shouldn’t stop you from doing normal activities, the idea of having to live with intermittent catherization was almost unimaginable to Vicky; how was she ever going to go out? Going to travel?

"When I first got told that I'd have to catheterize, I wasn't happy at all. For a quite a while, probably about six months, I felt as if this was going to be a very poor way to live”. My husband would say “just think positive, we're going to be okay. We’ll do holidays still”, but I just didn't feel comfortable about any of it"

Returning to an active life

The doctors reassured Vicky that she could still live an active life, but she found it hard to believe that that this would be possible. Vicky was convinced that her new catheter regimen would make it hard to leave the house and that her freedom had come to a crashing halt:

"I was thinking, that I would never be able to go on holidays again, as it is more difficult with catheterization. I have to be careful knowing where I’m going because you've got to use public facilities when you're out and about, and that in itself can be very daunting and I just didn't feel comfortable about it."

However, after learning to manage her routine and take the necessary measures that life with a catheter requires, Vicky has regained her confidence of being out and about. She has returned to an active life with one of her greatest hobbies: lawn bowling.

"Lawn bowling is a big part of our life. We've been doing it now for about 10 years. I didn't use to catheterize when I went out. I would wait. But now I feel really more comfortable with that part now. I can do it when I'm out - I just have to plan my day."

Dreaming of the next holiday adventure

Besides lawn bowling, Vicky is also a travel enthusiast. Although going on holiday can be a bit more difficult with catheterization, Vicky is certain that the future holds opportunities for new adventures:

"I just take my little handy bag with me and I've got everything there I need to manage. I find that restrooms with disability facilities are the best because they're private; you don't have to worry about how long you're in there. I'd go in there and I'd sort of have to do like a little reconnaissance and work out what I was going to do. So, I think the future looks pretty bright - I've accepted what I have to do now and I’d like to do some more travelling and go overseas."

In most people, urine is normally sterile (free from germs or bacteria) and the presence of bacteria in the urinary tract does not necessarily cause a urinary tract infection. If, however, the bacteria grow and multiply to a certain level, they may cause an infection of the urinary tract and needs to be treated. Anyone can get a urinary tract infection (UTI), but they’re more common in women than men due to the short female urethra (the channel through which urine is passed).

An infection can be thought of as a group of symptoms caused by bacteria entering an area of your body that they should not be in. Urinary infections are caused by bacteria entering your bladder. Bacteria most commonly enter your bladder through the urethra. The bacteria multiply in your bladder, either floating in the urine or attached to the bladder wall. As your bladder and kidneys are connected, bacteria in the bladder can also invade your kidneys.

If your body’s immune system fails to clear the bacteria from your body, treatment with antibiotics is probably needed. If you have bladder issues already, you’re more at risk of getting UTI.

The bladder plays an important role in our everyday life, and it can be helpful to know a bit about how it works – especially when it doesn’t.

The bladder is normally one of those body organs that is easy to ignore – unless you really need to go! Yet when you leak or are unable to empty your bladder, this little organ becomes almost impossible to ignore.

The bladder and the urinary system

When the bladder and its supporting systems and functions work together as they should, you would feel the urge to go to the toilet when the bladder is about half-full. Passing the urine would then be a controlled and voluntary activity.
The bladder is part of the urinary tract. The upper tract consists of the two kidneys, which lie in the lower back and are attached to the bladder by narrow tubes called ureters. Urine is produced in the kidneys, and flows from the kidneys into the bladder via the ureters.

The bladder is placed in the lower tract together with the urethral sphincters (closing muscles) and the urethra (the tube that leads urine from the bladder to the outside opening). The bladder stores urine until the urethra carries it out of the body. This flow, from the bladder to the urethra, is controlled by the urethral sphincters, which open and close the bladder outlet. The sphincters are supported by the pelvic floor, which holds up the organs placed in the lower part of your body – almost like a sling.

The bladder and the brain

Bladder activity is regulated by the brain and our nervous system. The bladder is a sac-like muscle that can stretch and expand as it fills with urine. The net of muscles in the bladder has stretch receptors, which respond when the bladder begins to fill with urine. All the stretch receptors are connected to nerves, which send signals up through the spine to the brain that now is the time to urinate. If it’s convenient for a person to do so, then the brain sends the message back, that it’s OK to release the urine.

When a person normally feels the urge to urinate, the first reaction is to squeeze the sphincter muscles, lifting the pelvic floor, in order to hold the urine inside the body until it’s convenient to urinate.

An average person urinates 4-6 times a day, and it’s important that the bladder is fully emptied regularly, as even a small amount of urine left in the bladder can cause urinary tract infections.

Emptying your bladder with a catheter can give you the freedom to get on with activities that are important to you. The key is finding a way to make emptying your bladder with a catheter a part of your daily routine. Here is some advice that other catheter users have found useful when they had to find their way of fitting catheterisation into their daily lives.

Use a chart or set an alarm to remember

At first, many people like to use a chart or diary, which can be good visual cues when implementing a new routine. Charts are also helpful if your nurse wants you to keep track of the amount of urine you pass. Other suggestions might be to set a watch or a phone alarm. Using IC is the preferred treatment when you are not able to empty your bladder normally – this avoids residual urine in the bladder, which can lead to infections or complications. You should catheterise 4-6 times a day - or as often as prescribed by your doctor or nurse - depending on your situation.

Catheterise 4-6 times or as prescribed by your doctor or nurse

This is the number of times that nurses and doctors recommend you to do IC (if you are not able to urinate normally e.g. due to chronic urinary retention). If you are completely depending on catheters to empty your bladder and catheterise less than prescribed by your doctor or nurse - depending on your situation.

Leakage:

Leakage might occur because your bladder essentially gives in to the urine volume exceeding the bladder capacity. Consider catheterising more frequently to avoid the bladder pressure from building up. 

Urinary tract infection:

If you do not empty your bladder often or don’t empty it completely, the urine can become stale. Bacteria in the urine will multiply, which may lead to an infection of your bladder or urinary tract. 

Potential damage to your kidneys:

The increased pressure on your bladder can create a backflow of urine to your kidneys, which can lead to an infection or long-term damage to your kidneys. See how the bladder works in our Basic section.If you are catheterising more than 6 times per day and still have problems with urine leakage, you should consult your doctor.

Measure the amount of urine you pass

Make sure your bladder is fully emptied every time you catheterise. Urine left in the bladder can cause infections. Every once in a while, measure the amount of urine you empty. It should be no more than around 2 cups (400 ml). If you empty more than 400 ml, ask your doctor if you should perhaps catheterise more often.

Go out – but still remember to empty your bladder

Keeping your catheterisation routine is just as important when you are out as it is when you are at home. Plan your day ahead, so your catheterisation fits in with your other activities. When is it convenient for you to catheterise? Before visiting the museum? During the intermission at the theatre? Read more tips about fitting catheterisation into your social life here.

But always remember to empty your bladder completely regardless of where you are.

To make sure urine is removed from the base of your bladder, you need to remove the catheter slowly and pause if more urine is flowing out. Watch a video for further instruction on how to use different types of catheters.

Rachel received compensation from Coloplast to provide this information. Each person’s situation is unique so your experience may not be the same.

Rachel is ‘Rocking 2 Stomas ‘  - here she shares her story and how she has found hope to live the future she wants.

I was staring at myself in the mirror looking at my ‘ileostomy’ and my leg bag on my calf from my Suprapubic Catheter (SPC) and I was full of fear and the unknown...It was the start of the summer and that morning I was told the results of my routine ‘cystoscopy’ (investigation of the bladder). It was not good news, my bladder was extremely small, damaged and the biopsy results confirmed that the cells had mutated. I had my SPC for 7 years and now there was no other option but for my bladder and lymph nodes to be removed within 2 weeks and a urostomy (medical term ileal conduit) to be formed.As I stared in the mirror I felt heartbroken, angry, and fearful. I just kept thinking ‘How on earth will I cope with 2 stomas?’ I didn’t even like the ileostomy at the time because it had prolapsed and that affected my body image back then. I knew in my heart I had to have this surgery. There was no other option not only because the cells had mutated and were starting to turn cancerous but I was getting horrific bladder spasms from the SPC that stopped me living and I was barely existing.

So, in June 2015 I arrived at the hospital in a wheelchair and had an 8-10-hour operation in a combined effort by my Urology surgeon and Colorectal surgeon to remove my bladder, form a urostomy and fix my prolapsed ileostomy. My body struggled throughout the surgery but I had amazing anaesthetists and surgeons that got me through. I woke up in Intensive Care Unit and it wasn’t long before I went to High Dependency Unit and then the urology ward.

"It didn’t take me long to realise that maybe this was the best thing that had happened to me."

I started to see the glimpses of a new ‘positive’ life with my second stoma. When my Stoma Care Nurse first changed my urostomy it squirted all over her so we named it ‘Squirt’ and I knew we would be friends!I was about to be discharged after 10 days when unfortunately, I caught Clostridium difficile (C.Diff) off another patient and I was extremely poorly so my stay ended up being 3 months in isolation and I had many interventions to help get me through. Even though this happened I still didn’t regret the surgery.

When it was time to be discharged, I was adamant I wanted to walk out of the hospital (leaning on a wheelchair) and I did. When I went home I slipped on a summer dress that I had not worn for 7 years because I always wore my leg bag on my calf and had avoided dresses! At that moment, I knew I had been given a ‘second chance’ of life again and vowed to embrace both of my stomas because I could see and feel the ‘freedom’ that they had given me.

"When I am in the hospital my life doesn’t stop and I make it part of my life and treat it as a mini break."

Seeing the positives and almost making a gratitude list I started accepting both my stomas even the prolapsed ileostomy. When I felt overwhelmed I would think of life before them and how horrific it was and that helped put it all into perspective. Since then I have had other challenges with the 8 failed refashion surgeries for my prolapsed ileostomy and having sepsis 10 times but I try to not let those experiences get me down or blame my stomas. I adapt, and when I am in the hospital my life doesn’t stop and I make it part of my life and treat it as a mini break.

During all those admissions since requiring my second stoma the nurses on the ward would get me to speak to new ostomates which I loved. I realised there wasn’t many young urostomates or many ostomates with 2 stomas. Surfing the internet I found lots of brilliant blogs about colostomies and ileostomies but not in terms of a urostomy or 2 stomas. So, this was when my blog rocking2stomas was born and life has never been the same since!!

"I saw how important ‘identification’ was and connecting with other ostomates who just ‘get it’."

I originally started this to help other ostomates not feel so alone and isolated as I had felt but I had no idea how much my blog would help myself with my own journey of acceptance. I found an online community on Facebook that I never knew existed.

Bearing in mind I had my ileostomy in 2012 due to Pure Autonomic Failure and my bowel failed to function, I never thought to search for groups. I saw how important ‘identification’ was and connecting with other ostomates who just ‘get it’. I started getting a lot of messages from ostomates with 2 stomas like me feeling like they were the only ones. I wasn’t even aware before I started my blog that we were called ‘Double Baggers’ I had no idea! After receiving more and more messages, I decided to set up a Facebook group called ‘Double Baggers Support Group’ for anybody with 2 stomas, about to have a second stoma or are family members of somebody with 2 stomas. This is not even a year old and we have nearly 300 members all over the world which is amazing!

Urostomies can sometimes be forgotten about amongst Healthcare Professionals and the public. However, when you have 2 stomas we are even less acknowledged because we have a small incidence in comparison.

"Without them (my stomas) I would not be here."

Where I am at today is, I am truly grateful for both my stomas, without them I would not be here but also, I would not have reached this deep level within myself. I worked as an ex Healthcare Professional before my rare illness Pure Autonomic failure hit making my bowel and bladder fail to function normally. Now I am doing a similar thing but in a completely different capacity. Advocating in healthcare raising both urostomy and ostomy awareness and supporting new ostomates have given me back a purpose and drive again.

I am truly the happiest I have ever been but it hasn’t always been that way. I have had dark times but I have worked through them and now come out the other side to be able to help others. This takes time and acceptance doesn’t come overnight but by setting small goals I built up my confidence which helped me appreciate the gift my stomas have given me. Not only have my stomas saved my life but they have given me amazing friends, met fellow advocates, have a purpose again but the most surprising…they even helped me find a man called Steve who also has an ileostomy. So together we are Rocking 3 stomas!!!!

Coloplast Care would like to thank Rachel for being so open and honest, Rachel says: 

"There is hope, there is a future and when I embraced my stomas and found gratitude for them - amazing opportunities have come my way."

"Katryna, living with an ileostomy: I tend to shower without my bag on, completely naked, so that I can get a good wash around my stoma and really get the skin nice and clean. Then I will put my bag on once I’ve had my shower."

Your ostomy is in many ways like getting a completely new body part - it does take a while to get used to something "new" being there. The swelling should already be reduced, but it could still be a little larger than normal.

A little blood is not unusual

The ostomy tissue is very similar to the inside of your mouth – however, it's not sensitive at all, and the red colour is normal and does not indicate pain or inflammation, as you'll notice when you touch it.It could bleed a little because blood vessels are very close to the surface, but that's normal - just like the tissue inside your mouth bleeds easily.

Refrain from using soap when cleaning

You should obviously handle your ostomy with care, but there is no need to be afraid of touching it. To clean it, simply use tap water and soft medical wipes or soft cotton wool.The ostomy tissue and the skin around it doesn't need soap for cleansing, and in fact, soap could irritate it - as could baby wipes.

Taking a bath with an ostomy

Showering and bathing will not damage neither ostomy nor pouching system, so you can shower with or without your pouch as you please – as long as you remember to keep soap, oils or creams etc. away from the ostomy.Let your ostomy and the surrounding skin dry carefully before you cover it – and that's actually all you need to do. You could use soft non-woven swabs to gently stop any output dripping while allowing your skin to dry.

Preparation is key when establishing sound routines in order to change and empty your pouch smoothly. Make sure that the following items are always within short reach, no matter where you go:

• Soft wipes - For cleaning your ostomy without causing unnecessary skin irritation.
• Warm water - The safest way to clean your ostomy is using warm water without any additives (e.g. soap, oil etc.)
• Disposable bag - In order to safely dispose the used ostomy pouch.
• New ostomy pouch - Make sure to bring a couple in case something happens to the first one
• Curved scissors - Unless you have a pre-cut pouch, which you don't need to cut to size.
• Ostomy guide - n order to cut a hole that fits the ostomy as perfectly as possible, trace the size and shape of the ostomy on the ostomy guide before you cut.
• Other supporting products - These could include various tapes, lotions, paste etc

Sore skin and detached baseplate

About five years ago when I first became the owner of an ostomy (which I named ‘It’) , I was really concerned about how my skin would cope with being covered by the adhesive layer and baseplate. I was careful to apply barrier cream and anything that was recommended to assist in the care of that area of skin.
The baseplate had a tendency to come detached in those days, which does cause us all so much stress and embarrassment. My skin was also very sore and patchy especially close to my ostomy.

Start from scratch

On changing from a one piece bag to a two piece system I determined to start my regime again from scratch and see if I could establish the reason for the problems I was experiencing. I determined to change my baseplate at the slightest sign of a tingle (I'm sure you know what I mean) even if the baseplate seemed fine. A good quality adhesive remover used copiously was always part of a careful removal of the baseplate. The emphasis being to be as gentle as possible to my skin by supporting it as the adhesive gave way.

Showering as nature intended

Secondly I only used soap and water to clean my skin and showered with old 'It' naked as nature intended when changing the baseplate.Using an ostomy cup helps to get in and out of the shower without ' incidents' and only dry wipes to dry the skin before applying the baseplate ensures an additive free skin surface.

Result: No ostomy worries

To my great delight that regime resulted in my skin healing really well and virtually no incidents of the baseplate 'letting go'. On the occasion when that happens now I can usually put it down to my mistake.

Having the baseplate on too long when I've been very active is mostly the reason. I have continued looking after my skin around my ostomy in this way for the past couple of years and I'm content with it.

I suspect we all have different skin types but for me this simple formula is perfect and keeps me free of 'ostomy worries'.

How to avoid flaky skin

One of my biggest skin problems generally since 'It' is that of dry flaky patches on my face and legs. I generally had put this down to inadequate hydration of my skin for whatever reason. Because we do not have the water, which would normally be extracted from food in our colon, there is a natural shortfall in our hydration, I'm informed.

It's been recommended to me that I should drink about 2 ½ to 3 litres of water a day. I'm able to achieve this by sipping often during the day. I find that when I do this, and also use a moisturiser on the effected parts, my skin returns to normal. I also take a good quality omega-3 fish oil capsule daily.

A recipe for healthy skin

I did think that because of my age my skin was having a hard time anyway so short of having a Ready Mix lorry load of anti ageing cream delivered I made use of Google to investigate solutions.It turns out that wearing sunscreen above factor 30 when outdoors (I do), eating a healthy diet (I do my best) and not smoking (I don't) are the main contributors to a vibrant healthy skin. There are vitamin supplements of vitals C and E, which are meant to work so I will have to try those or just accept this craggy old face as it is. Glass is definitely half full. Have fun.