If you have Irritable Bowel Disease (IBD), and are not familiar with the awesome work of Crohn’s & Colitis UK, head on over to their website and check them out; after you have read this amazing blog post of course.
Crohn’s & Colitis UK are, without doubt the leading IBD charity, providing emotional support for sufferers and their families, as well as information hot lines and printable resources on a wide variety of topics. The services provided by Crohn’s & Colitis UK will also supplement the information that is provided to you by your healthcare team, and very often, the very leaflets your consultant gives you, will have been printed from the website above… They are that good!
Beyond the patient centric focus, Crohn’s & Colitis UK are constantly funding ground breaking research and collaborating with healthcare professionals to support and develop health services across the UK, to ensure first class care for all IBD sufferers.
In short, they are bloody amazing, and have been my first port of call whenever I am in need of advice, or have been asked to support someone who has recently been diagnosed. If my opening ramblings haven’t convinced you, let me give you six reasons why Crohn’s & Colitis UK are the best of the best.
The library of knowledge
The Crohn’s & Colitis UK website is a fantastic resource in and of itself, but their publication library takes this to the next level, offering up over 50 unique publications, that span a diverse range of topics. The wonderful thing about this information, is that it comes in many different forms:
- Information Sheets: These offer up deep dives into specific topics, such as drugs or medical procedures. I have even been given these by my consultant alongside the medical guidance as the language used by Crohn’s & Colitis UK is far more accessible.
- Information Guides: These are slightly more targeted to a specific audience such as employers or educational institutions and aim to provide insight into what they can expect when supporting someone with IBD. Helpfully, these include the bits you may be a little embarrassed to cover face to face with your new boss or teacher. There are also guides for you, as the sufferer, on how to approach starting a new job or heading off to Uni, and the support that should be available to you.
- Information Booklets: These are the long play, booklet style forms of information, which cover broader topics from start to finish; areas such as Living with Crohn’s Disease, Living with Ulcerative Colitis, IBD and Food, and How to support a child who has been diagnosed with IBD. These are good reads for those new to the topics, and provide huge insights for those newly diagnosed.
Check it out at: Crohn’s & Colitis UK publications
Provision of a Rader Key and the Can’t Wait Card
Radar Key’s will let you unlock disabled toilets that would otherwise be locked to you, and this is something we all need in those moments where you have seconds to spare, or all nearby toilets are mysteriously out of order. The other bonus is that most disabled toilets are both very spacious, and a solo cubical. This can provide some much needed privacy in our less glamourous moments.
The “Can’t Wait Card” goes hand in hand with the radar key, and can be helpful in those situations when there are no toilets in sight. Showing this to a member of staff or manager in a retail store provides them with all the information they need about your condition, and asks them politely for the use of their staff toilets. Most of the time, they will say yes, but this is not a legal obligation and they can say no. However, I find a follow up statement of “it’s either going to be in your toilet or on your shop floor” can help break the deadlock and prove I am not bluffing.
Check it out at: Become a member
Local network groups and local events
Crohn’s & Colitis UK have around fifty local network groups across England, Scotland, Northern Ireland and Wales. Each local group is led by a team of volunteers, who, more often than not, are also fellow sufferers of IBD. They bring the knowledge and support of the wider charity to your doorstep, and provide a range of services that promote IBD awareness in their area. These can include things like fundraising events, educational seminars, social gatherings and national events like the Walk It, and World IBD day.
As a previous member of the East Cornwall & West Devon group, I speak from experience when I say it is extremely rewarding and opens up the door to a loving community of people who either are, or have been in your shoes. If you are feeling isolated, misunderstood or looking for someone to compare endoscopy notes with, popping along to a local event is an amazing first step.
Check it out at: Find your local network
Find an IBD Nurse Specialist
If you are newly diagnosed, or have recently moved to another part of the UK, it can be quite a laborious process to get up and running with new doctors and new hospitals. This is especially true if you are a long time suffer or take medication that you need the hospital to administer.
Thankfully, Crohn’s & Colitis UK have got you covered and have created a tool to help you find your local IBD Nurse Specialists. With just the provision of your postcode, the tool will retrieve the most up to date contact details for the IBD nurses closest to you. From personal experience, although I still had to be referred by my GP, the process was much more succinct.
Check it out at: Find an IBD Nurse Specialist
Help and advice lines
If you are facing up to an IBD diagnosis, it can feel overwhelming, and to be honest, quite scary, with large amounts of information to take in and new limitations likely being placed on both your diet and life style. And of course, there is also the emotional and mental impacts that come along for the ride too.
But fear not, Crohn’s & Colitis UK have dedicated helplines, accessible by phone, email and even web chat. Every volunteer who responds to these, although not a medical professional, has had personal experience with Crohn’s or Colitis and has undergone significant training before taking up the mantle. This means they will be able to empathise with what you are going through, as they have likely been through it themselves.
Whether you need advice on the drugs you are taking, your diet, or simply want to talk to someone because your disease has got you up against the wall, these guys have got your back.
Check it out at: Support for you
Child Focused resources:
Crohn’s & Colitis UK have recently rolled out another amazing resource aimed at the youngest suffers of IBD. Partnering with the children’s author Thomas Wolfe, they have created the story book: Meet our Crohn’s & Colitis cats. By anthropomorphising the conditions of Crohn’s & Colitis, this story beautifully describes what is it like to live with IBD in a way that is easily accessible to children in order to help them understand how these diseases could affect them, or someone they love. Did I mention it is also completely free to download, and is totally awesome.
Check it out at: Meet our Crohn’s & Colitis cats
This blog post could quite easily have been entitled “100 reasons why Crohn’s & Colitis UK are awesome”, but I doubt you would have got to this paragraph if that was the case. Head on over to CrohnsAndColitis.org.uk and see for yourself why these guys are the best of the best.