Coloplast Care

/2 Comments/in /by
The folk at Coloplast have developed a new support programme for people with an ostomy called Coloplast Care which is a fantastic idea and great development for ostomates everywhere.
Whether you are facing surgery, a new ostomate or had your ostomy for years, Coloplast know that each person is totally unique and therefore their needs for support are so different.  The great thing about Coloplast Care is that it is a bespoke and individual plan that aims to help in everything from the basic medical principles of an ostomy to the practical things you can expect as time goes on.  Offering information and support both physically and emotionally and giving you back a level of control to empower you in your new life.
I would have loved to have had this programme two years ago when I was facing surgery and think it is amazing how much ostomy support is moving on.  I remember the feelings of isolation, confusion and upset and just not having all the information.  Though my doctors and stoma nurse were wonderful, the questions I had always popped into my head at 3 am meaning I would find myself frantically googling away to figure out what I could do and sometimes felt very alone in the vast internet world of differing opinions.
coloplast care ostomy support
Whatever stage you are at, from complete newbie novice to old pro, we all still have questions, no matter how ‘sorted’ you are, a new situation can always pop up and create distress in not knowing how to handle it.  Coloplast Care advisors are there to guide you through stoma routines, ostomy accessories, check ups and so much more.

It’s not just for people who use Coloplast products; it’s open to anyone so do go take a look no matter which products you currently use.  It provides specific support and advice to each member based on your needs, whether your issues are emotional or if you have just had surgery, or perhaps you have had your stoma for 5 years but you are off travelling and need some advice, the programme tailors advice and support for the problems you are having right now.

So how do you join?

coloplast care ostomy support

It’s quick and simple, head over to the sign up page, fill in your name, email address and what sort of surgery you have had (or are expecting).

On the ‘Experience’ page, you are asked about any issues you may have with adhesion problems, skin irritation or pouch problems.

coloplast care ostomy support

The “Wellbeing’ page questions how you are feeling, with more in depth questions about your support, worries and emotional wellbeing.

coloplast care ostomy support

And that is the basic sign up done!  You can then go on to answer more questions about yourself and your situation if you like.  I would recommend this as they more information they have, the better and more useful support you can receive.  This includes more about you, how you live, your age, hobbies, activity levels and then information regarding your current ostomy products, shape and size of your stoma, position, how your body and skin is.  All this data is used to tailor your programme to you.

If you struggle with technology or are unsure on how to work the forms, do ask a friend, family member or a health professional to guide you through.  But it is very clear and simple to use.

The company’s ethos is to ‘listen and respond’ and so the website is chock full of advice sheets, support guides and problem solving information. It also includes a system to help ostomates identify problems that they’re having for example skin irritation, pancaking etc.  This means you can print off and discuss these issues with your stoma nurse, or request a call-back from an advisor, as well as the programme recommending some products to try and resolve these problems.  This isn’t to replace the advice from your doctors and stoma nurses but additional support that gives you the power to be informed and proactive.

It can be quite overwhelming when you see the amount of choice when it comes to ostomy bags and accessories, so to have a programme that goes through your needs and then shows you options is fantastic. You can also order free samples through the site to try out before committing to a new bag.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

 

Another part that is just great is the Ostomy Check, around 40% of people with a stoma have an issue that they are just putting up with, that they think is something they just have to live with.  The Ostomy Check is there for people to see what is ‘normal’ and what is an issue that they could do something about.  Coloplast support staff will send an email asking them to complete a checklist every couple of months.  I think this is a fantastic service that is patient centred, it is nice to feel cared for and sometimes after you have left hospital, you can feel isolated and not sure where to turn for support and advice.

I have met a lot of ostomates who have told me of issues, from slight niggles to huge problems, that they believed where part and parcel of life with a stoma.  This service allows people to see exactly what can be done to help and support them.  One person noticing an issue and recommending a product could change a person’s life!

As with everything, your stoma and ostomy needs change over time and the brilliant thing about Coloplast Care is that is adapts and changes with you.  This isn’t about a one size fits all support as that just doesnt work! The programme adapts and grows with your needs, tailoring advice to what you need, when you need it.

I have spoken to a few ostomates using the Coloplast Care programme and all have found it helpful, many saying they wished this was around when they first got their stomas.  I think we need to empower and educate ourselves about our health and this system helps you do that.

Head over to Coloplast now and check it out, it’s free, easy and if you don’t like it, you can opt out no problems!

 

 

Sam xx

 

This is a sponsored review, meaning that representatives of Coloplast Care have paid me for this post, but it is my own, honest opinions.  From time to time, So Bad Ass reviews products and services for companies, but I only share things that I believe benefit my amazing readers.

Good Work Tramlines! Thinking about disability

/3 Comments/in /by

I love Tramlines.  It is the highlight of the year in Sheffield and is an amazing showcase of the wonderful talent we have in this great city.  For those who don’t know, Tramlines is an inner city festival in Sheffield from the 24th to 26th July, it is city wide with a huge main stage and then venues all over town, all for a stonkingly good price of £30 for a weekend ticket!

tramlines timm cleasby

Photo: Timm Cleasby – The Picture Foundry

So I was chatting to the brilliant festival director Sarah Nulty who told me about how Tramlines is trying to be accessible to all and as I love talking poo, obviously that was my first question.  All toilets are relatively spacious and plentiful for able bodied people, but there are accessible toilets for those with specific needs which will be near the disabled viewing platforms.  But if anyone has access needs for the larger toilets due to a medical issue, Tramlines is offering a special wristband that will avoid any embarrassing questioning for those with invisible disabilities who may need to use the accessible loos at the main stages.

reverend and the makers mark tierney tramlines

Photo: Mark Tierney

If you have a medical issue that may require you to use these toilets, you need to head over to the main wristband exchange points on Ponderosa Park or City Hall with some form of proof that you have extra needs and a valid ticket and the staff there will give you a wristband that allows access to these toilets.  Security and staff will be aware what these wristbands allow and this means there is no embarrassing explanation of your needs during the weekend.

Good work Tramlines!

Regarding disabled access, an accessible viewing platform will be available at the Main Stage, and stewards will be available on the day to help direct you. As with the whole festival, shows on the Main Stage do get extremely busy, so please do arrive early.  The disabled loo access band is for use at the Accessible Toilets only at the main stage and Devonshire Green, not the other venues.

Most venues involved in Tramlines have disabled access. Please see individual venue profile pages for full details of disabled access.  Disabled customers with a carer will be able to claim free entrance to the event for one carer. Email  by 10th July to notify them in advance if you plan to attend with a carer by 10th July. No applications will be accepted after this point.
tramlines sheffield disability accessible toilets
The official charity for this year’s festival will be Sheffield Royal Society for the Blind (SRSB). As well as fundraising across the Tramlines site, they are also producing audio guides to the festival for blind and partially-sighted festival-goers.It is great to know that Tramlines are thinking about the needs of all festival goers and trying to ensure that the weekend will be enjoyable for all.  Having an illness or disability can often feel isolating and going to something like a festival seems as difficult as climbing a mountain but more and more events aren’t just fulfilling the legal responsibilities for disabled people but going above and beyond to make sure they are accessible to all.If you have specific questions and issues then do get in touch with the festival by email on  – remember that even the largest of companies are run by human beings and they are there to help.

I would highly recommend giving Tramlines a visit, tickets are still available but get buying quickly as it could easily sell out!

 

See you there!

 

Sam x

 

This is not a sponsored post, I just LOVE Tramlines! My husband is involved in the running of Tramlines but I have received no remuneration for this post.

Pelican Live Your Life Roadshow – Preston

/1 Comment/in /by

I will be talking at the Pelican Live Your Life roadshow in Preston on Sunday 5th July talking ostomies and body image.

At Bartle Hall from 11-3, Come along and meet the Pelican team, chat to nurses, and attend some great talks. It’s a must for people with an ostomy, carers, family and friends. I’ll be doing my talk once in the morning and once in the afternoon so if you’re near Preston, do call in.

IMG_3807.PNG

Feel free to drop by with your family and friends, anytime between 11am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact:

Email –
Freephone – 0800 318 282

The guys at Pelican are super friendly and so easy to talk to, it’s well worth getting in touch.

Sam x

Rosie Batty: Silencing those who speak out

/7 Comments/in /by

In February 2014, 11-year-old son Luke Batty was murdered by his father, Greg Anderson at cricket practice in Melbourne, Australia.  It made worldwide news and society was shocked and appalled at the violent attack from a father towards a son.

His mum Rosie Batty became an advocate for female domestic violence victims and campaigner for making changes to government processes relating to the protection of women and children and she established the Luke Batty Foundation and Never Alone to assist women and children impacted by domestic violence.  Her courage, strength and bad ass spirit helped her to become the 2015 Australian of the Year.

She speaks out at events and to the media about the horrific experience of losing her son and is a domestic violence campaigner.  She uses her life to bring the conversation of domestic violence into the limelight and I think her selfless efforts are inspirational.  She is using her pain from an experience that many couldn’t even imagine to make a positive difference to others.  What a hero!

So why is Mark Latham, a former Prime Ministerial candidate trying to shame her into silence?

In his column for the Australian Financial Review, Mark Latham said of Rosie’s public speaking events;

“How did Batty immerse herself in such company, wheeled out at business functions to retell the story of her son’s murder in February 2014? There was a time, in the dignity of working class life, when grieving was conducted in private”.

How dare he!

What Rosie has done isn’t about a lack of dignity or respect to her son, the fact that this man feels he can silence a woman says more about him than her.  Her decision to speak out and make a difference is saving lives.

With her words other woman may find the strength to ask for help, mothers may leave abusive partners for her children as well as herself, she is teaching society about the warning signs and is publicly telling the government that more support is needed.

But when Mark Latham comments saying that this is a ‘private issue’ and ‘undignified’ he is creating a conspiracy of shame and silence and putting lives at risk.

This story struck a chord with me as I write about illnesses and treatment that can be embarrassing and ‘impolite’ to discuss in public, I spend most of my life either writing or speaking about poo and have faced others who believe it is undignified and should be kept private.  I never thought as a child that I would have a career in talking about poo, but this is where I am.

The experiences of Rosie Batty are incomparable, I am not putting losing a child in the same league as having an illness or surgeries, but the act of speaking out about something that others believe should stay private is similar.  I write, I speak out, I do all this to make a difference and help others.  I use my pain and suffering to reach out to those who are suffering and to break the taboo of embarrassing illnesses in the same way that Rosie uses her pain to help victims of domestic violence.

And so to see a fellow ‘sharer’ be shamed and silenced by a politician is just abhorrent.

When you go through a terrible experience, whether it be loss, illness or a life event that just knocks you for six, the shock and pain can make you feel so isolated.  It can feel like your life is crumbling and everything has changed forever.  How each person deals with that pain is personal and unique.  Some will keep it private and deal with it quietly and on their own, others may access the support of a wider circle and some may choose to use the experience to make a difference.

sam cleasby ibd blogger

There is no right way and people like Mark Latham don’t have the right to judge, shame and silence.

That judgement isn’t just affecting one person, the ripples spread so much further and you can hurt so many more.  Encouraging a culture of silence affects vulnerable people who need support and cements the shame and embarrassment into a person’s mind. I strongly and passionately believe that we should not fear speaking out about issues that are uncomfortable.

It takes courage to write or speak about things that are not socially acceptable or polite to discuss in public.  No matter how confident I may seem, every time I hit ‘post’, I fear the response I may get.  I worry that it will change the way people see me, I worry people will laugh at me or judge me.  But I keep doing it because I know I am helping, I know I am making a difference.

Rosie Batty is a true hero.  She is doing something amazing and helping so many when I am sure there are times when it is the last thing she wants.  I am sure she would give it all up in a second to have her boy back.  I am sure she is privately grieving and dealing with this in a personal way.  Her public persona and work doesn’t hinder her private grief.  She is amazing.

Please share this post and support Rosie using the hashtag #IStandWithRosie on Twitter.

Sam x

 

 

I’m (sheepishly) back

/17 Comments/in /by

Hello you lovely lot.

Firstly thank you all so much for all the wonderful messages I received after my last post (Going Dark), it means so much to know that there are so many people thinking of me.  I felt a little embarrassed after hitting send, I worried that I came across mardy and miserable.  But I felt mardy and miserable at the time, so it did the job!

I’m not really feeling much better, I am thoroughly exhausted and still having the aching joints, dry eyes and skin.  The blood tests results didn’t show any remarkable inflammation markers and the Rheumatoid Arthritis test came back negative which is great news as I was really unhappy at the thought of more steroids and a RA diagnosis might have pushed me too far!  I’m having some more tests to check my iron stores, Vit B 12 and Vit D levels as well as thyroid tests and coeliac disease tests.

Someone suggested that perhaps the exhaustion was just part and parcel of life now and the joint pain could be due to all the steroids I’ve had to take in my life.  I know fatigue can play a huge role in the life of IBD patients and this makes me sad.

Emotionally, I suppose I’m not quite right.  I feel ever so sad and quite anxious.  I don’t know how to react to these feelings, people ask me how I’m doing and my instinct is to say ‘fine’.  I smile, I laugh, I join in.  But inside I am struggling.  I don’t really know what else I can say.  I’m trying to get back to business as usual.

Anyway, I just wanted to update you all and thank you for your kindness over the past week.

 

Sam xxx