Cutting out your baseplate can seem like a task. Making sure you haven’t left any gaps that expose your skin to output and creating a seal strong enough to protect from leakage can be stressful.

When you use a Convatec Mouldable Technology baseplate, you don’t have to worry about gaps and a secure seal. Let the patented technology in the baseplate take care of that.

But don’t just take our word for it. Keep reading to learn more about Glen Neilson’s stoma story and how Mouldable has helped him to live life on his own terms and carry on doing the things he loves most, like climbing mountains. Glen has had his ileostomy for 22 years due to Ulcerative Colitis, but has never let his stoma dictate what he can and can’t do.

“My stoma was my life-saver. I completely understand why not everyone shares this feeling. But that’s how I have come to think of my stoma. It saved my life – and completely transformed the way I live my life.

But it hasn’t always been that way. I woke up during surgery in intensive care staring down at it. That wasn’t the best introduction! And neither was catching MRSA in hospital and spending 8 long months recovering at home with a hole in my stomach.

My first stoma bag didn’t bring any joy either. It didn’t help that I had problems around my stoma because of my baseplate and creases – and the fact my bag felt more like a carrier bag! It actually fell off the first time I ever went swimming. It took me two years before I would ever visit a pool again.

It wasn’t until I took to Google and ended up stumbling across the Convatec Natura two-piece bag that things started clicking into place (and I’m not just talking about the baseplate!).

The new bag gave me confidence and the old me started coming back. I got into going to the gym again, walking, golf and wild swimming.

After using the 2-piece Convatec Natura for years, and although I was more than happy with it, I just thought I would see if any new products were available or if there was anything available I didn’t know about as I was training for Kilimanjaro at the time. I wanted something that may not need cutting or worrying about the size compared to the stoma so was even more comfortable while I hiked.

This is when I was introduced to Convatec Mouldable Technology, which honestly was life changing for me. It is just amazing and gives me the confidence to climb mountains do my daily job here in the UK as a firefighter without any worries whatsoever. I truly believe no other product available on the market can match the superiority of the mouldable system.

The best thing about Mouldable is that it’s so easy to apply and there’s no cutting required. You literally just roll the baseplate back with your thumbs, apply it and it then gently returns to its original shape to hug my stoma, giving me a nice snug fit.

Another great thing about Mouldable is that a layer of the baseplate can absorb liquid output, causing it to gently swell around my stoma for an even better fit. Perfect for when I’m climbing mountains or when out on a job as a firefighter!

I would recommend Mouldable to anyone, as it literally has been life changing for me.

Want to learn more? Find out what others had to say about Mouldable in the video below.

The post Love your stoma skin with Convatec Mouldable Technology™ appeared first on Bladder & Bowel UK.

However, despite the proven health benefits that stomas can provide for those with bladder and bowel problems, this form of treatment has sometimes been poorly understood by the general public. Worse, stigmas around stomas have often made it hard for ostomates to discuss their condition and get the support they need from those around them.

Fortunately, new evidence is now emerging that suggests perceptions are starting to change. Potter Rees Dolan recently carried out a survey of 518 people to assess attitudes towards and awareness of stomas among the UK public, revealing that the average Brit is more stoma-aware than you might realise.

Rising awareness of stomas and hidden illnesses

According to the results of the Potter Rees Dolan survey – the full results of which can be seen here – almost two thirds of British people have a good understanding of the importance of stomas, with 65% of respondents saying they knew what a stoma is.

Additionally, 68% were either somewhat or very confident that they understand why someone would require a stoma, while 73% said they understood that bowel cancer might lead to someone needing stoma surgery. 72% and 62% made a similar link for bowel surgery and Crohn’s disease, respectively.

This is despite the fact that only 28% of respondents personally knew someone with a stoma, and only 2% had a stoma themselves, suggesting that general awareness of stomas is increasing among those with no direct exposure to the issues involved.

The survey also indicated that Britons are starting to become more aware of the fact that some illnesses, including bladder and bowel conditions, do not need to be outwardly visible to have a significant effect on those affected. When asked whether they were familiar with “invisible illnesses”, 86% said yes, with 42% of those saying they understood the concept fully.

The spread of positive attitudes

As with so many aspects of public health, it would appear that this growing awareness around stomas and related issues is leading to the development of positive sentiment and welcoming attitudes, with any stigmas attached to having a stoma starting to fade away.

The respondents to PRD’s survey reflected this, with 78% saying they either agreed or strongly agreed that ostomates should not have to feel self-conscious about their colostomy, ileostomy and urostomy bags being visible. Meanwhile, 59% said they would not feel uncomfortable if a friend or colleague had a visible ostomy bag.

Similarly, the results indicated that people are also becoming more understanding of the issues that ostomates with non-visible conditions often face. An overwhelming 79% of those polled say they do not believe that only people with obvious physical disabilities should be able to use disabled toilets, with 55% saying they “strongly disagreed” with this idea.

This indicates that people with stomas are more likely than ever before to be able to depend on their friends, family members and colleagues to provide them with support and understanding as they focus on their adjustments and recoveries following stoma surgery.

Keeping the progress going

Although the results of the Potter Rees Dolan poll are certainly encouraging, it goes without saying that there is no reason to be complacent about this progress, with further public education and information needed to ensure that positive attitudes around stomas and hidden illnesses continue to grow.

For example, attention needs to be paid to the fact that some invisible illnesses elicit more empathy than others. While the majority of those responding to the survey believe that people with conditions like Crohn’s disease and multiple sclerosis should receive special allowances at work and be able to use disabled bathrooms and parking spaces, conditions such as migraines, diabetes and endometriosis generally receive a much lower level of understanding and sympathy.

This underlines the importance of continued advocacy by and on behalf of the UK’s disabled community, as well as the continuation of public discussions about the issues that affect people with long-term health conditions. The more visible and well-represented these communities are in public life, the better they will be understood when talking about the unique issues affecting them.

After all, people with bladder and bowel conditions are always likely to have challenges to face – but with the benefit of effective treatment options like stomas and the support of others behind them, overcoming those hurdles becomes so much easier.

Potter Rees Dolan provides legal services for those affected by personal injuries. To find out more about the work they do for people with stomas, please visit www.prd.uk.com.

If you would like to feature on Bladder & Bowel UK‘s blog please get in touch with us via email: bbuk@disabledliving.co.uk 

The post Are British public attitudes towards people with stomas improving? appeared first on Bladder & Bowel UK.

Alyssa will be 4 years old this December. She has a condition called Dyskeratosis congenita (DC) Hoyeraal-Hreidarsson (HH) syndrome. This was diagnosed when she was 18 months after falling very ill at 13 months old. We found out she had brain abnormalities at 9 months old causing a movement disorder.

At 13 months Alyssa became paralysed in both legs and her left arm. Results showed transverse myelitis (inflammation of the spinal cord). At the same time, blood results came back low for Hemoglobin (Hb), platelets and white cells. Alyssa had her first blood and platelet transfusion. Tests revealed that Alyssa has DC HH syndrome. This caused her bone marrow to fail leading to a bone marrow transplant at 18 months old. She experienced gut failure which caused internal bleeding.

Expanding on Alyssa’s story, Amanda told us:

The peg was fitted in May 2016. During August 2016 – August 2017, she had all of her nutrition given by total parenteral nutrition (TPN). Now she is 3 nights TPN and 4 nights with fluids by central line and has 590 millilitres peg feed daily. She has had 104 platelet transfusions and 35 blood transfusions; sepsis 5 times; is on her 6th central line and on her 2nd peg; has liver disease and we’re waiting for tests to see if she has lung disease (hopefully not).

December 2017 was when Alyssa fell ill again. This time she nearly lost her life. She was admitted to the Intensive Care Unit (ICU) at Southampton General Hospital while on holiday. She suffered a sepsis related infection due to a buried peg bumper. The peg was first removed not knowing the full extent until hours later; she went down for emergency open stomach surgery.

Alyssa became progressively worse and saturation was dropping. She was put on the ventilator and rushed to theatre. The infection had spread into her lungs and throughout her colon. She had a blood clot and 15cm of her small bowel was removed. This is when Alyssa had her ileostomy done on the 21st December 2017 just after her 3rd birthday.

Have there been any challenges you have faced as a family when it comes to caring for your daughter?

Now Alyssa still has her ileostomy and hopefully she can be reversed in early 2019. However, when Alyssa first had the stoma it was a big challenge getting used to emptying it and changing the bag. It took a while to find what worked best for her e.g. the step by step process of changing the bag and keeping her calm whilst emptying the bag. At first the bag was constantly leaking. The staff nurses on ICU and High Dependency Unit (HDU) would put the bag on and it would leak. It was very stressful and painful for Alyssa and us.

The stoma nurse shown me how to do it. The most challenging part was cutting the bag correctly as the shape resembles a number 8. Getting the new bag on while Alyssa was constantly pooing was difficult. Within a week, I got used to doing the stoma and mastered cutting the bag correctly by 4 weeks.

How has living with a stoma affected your daughter’s life? (Any restrictions doing daily activities, leisure, etc.)

Alyssa has tried different products to help with ulcerations and we’re pleased that these products now work well for her. Every 2 days I change her bag. She has got used to it so she is aware it’s there. But due to her delayed development it doesn’t affect her mentally or socially.

Once the bag is off I clean it with warm water, put Medi Derma-S applicator around her stoma. Then I check if the bag fits what I have cut out using a template of the previous cut out. Next, the seal goes on and DuoDerm for extra skin protection. The bag goes on keeping my hand over it for 3 minutes to help it stick better and lastly coloplast goes around the stoma bag and a pelican perform sachet goes into the bag to soak up Alyssa’s diarrhoea and helps with leakage.

It can still be a challenge now to change the bag if Alyssa’s output has increased. When going out, emptying the bag and changing her nappy is inconvenient as I have to do this on the back seats of our car as majority of places don’t have mobility changing facilities. With simple things such as shopping, we wait until Alyssa has had her stoma emptied before going out as she also suffers from fatigue. Usually, we wait until she has napped for two hours.

We feel we are limited to times and where we can go, such as holiday destinations that are mobility friendly. The stoma is not the only problem. Alyssa cannot walk and recently, we have started using hoist systems to transfer her. This is a big problem now when trying to go out.

What advice do you have for other parents who have a child with a stoma?

It can be a shock when you see your child’s stoma for the first time but I would like to think anyone can adjust to living with a stoma and the ones who cares for the stoma. It may take time and that’s okay. With positive thinking and talking about any issues you have could help adjust.

Even though Alyssa doesn’t understand, we accept that she may have a stoma for life for good reasons but it doesn’t change who Alyssa is. She is still our funny beautiful little girl. It was hard to be positive at times but for Alyssa’s sake we pulled together and make everything fun for Alyssa to concentrate on the positives.

The post Amanda Morgan talks about her daughter’s life with a stoma appeared first on Bladder & Bowel UK.