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World Ostomy Day

Today is World Ostomy Day! This is like my poo lady Christmas!

When I had my surgery, I never thought I would be celebrating my Ostomy but as I have learnt to accept my illness, I can recognise that my Ostomy was the start of a new life for me. It is a different life to the one I imagined but my ostomy has had so many positive effects on my life.


Writing about ostomies, jpouches, IBD and invisible disabilities is an honour and a privilege and I have heard so many stories both of struggle and of overcoming adversity.


Today lets celebrate our ostomies whether we still have them or not!  I now have a jpouch and so no longer have my ostomy but I loved my stoma that helped my body come through ulcerative colitis.


Having your body change so massively can be a huge challenge, both physically, emotionally and mentally.  It can be a very isolating experience and so talking out about life with an Ostomy is so important to help others.  I speak out in the hope that people following in my path will have a slightly easier time.


If you need support or help, here are a list of amazing people that I would highly recommend.

Colostomy Association

IA Support

Crohns and Colitis UK

Feel free to share my World Ostomy Day images with links to www.sobadass.me or make your own pictures to share and celebrate!

 

Sam x

National Diversity Awards

I feel very privileged to have been nominated for an award at the National Diversity Awards for Role Model for disability.

I am totally overwhelmed and honoured that people have taken the time to vote for me.

Though I do this blog and raise awareness because I want to make a difference and help others, to be recognised for my efforts is really heartwarming.

Voting closes on June 21st and so please take the time to have a look through the nominees and vote for someone! Of course it would be lovely if that were for me, but having seen the other nominees I’m just happy to be put in the same categories as these wonderful folk.

Please do pop over and vote. It takes a couple of minutes.

Thank you!

Sam x

Why we need to keep talking about IBD

What an amazing year 2014 was for raising awareness of Inflammatory Bowel Disease!! When I was diagnosed with Ulcerative Colitis in 2004, I had never heard of the disease and through the years, so many people I spoke to were completely oblivious to it too.

In 2013, I had a subtotal colectomy and ileostomy formed.  I did what any right minded, modern person does and googled the hell out of it.  I found some great medical advice but very few blogs about IBD.  I talk often about the amazing Inflamed and Untamed, who I fell a bit in love with, and who was the inspiration for me starting this blog, but I could find hardly anything in the UK.

Yet in the past 18 months, there seems to have been a huge uptake in IBD blogs, people sharing their personal experiences of chronic illness of Crohns and Colitis and I think it is bloody WONDERFUL!  It is just fantastic that people facing a life with IBD now have so much information at their fingertips now.  The whole reason I started this blog was to share my stories and experiences in the hope of helping others.

I recently wrote about some of my favourite IBD bloggers, including Thaila Skye and Colitis Ninja, and there are so many people currently working SO HARD to raise awareness, raise money and working to #stoppoobeingtaboo – I raise a glass to every single blogger and campaigner.  We are doing something to make a difference and should be very proud of ourselves!

crohns and colitis awareness week

 

So things are good, right? Yes, of course! But they can be SO MUCH BETTER, and we need to all keep talking about Inflammatory Bowel Disease.

Why? Because the more we talk, the more we #stoppoobeingtaboo, the more money we raise for support and research, the better life will be for the 300,000 people in the UK and the 5 MILLION people worldwide living with Crohns and Ulcerative Colitis.

Inflammatory Bowel Disease is not just a poo disease where you get a touch of diarrhoea…

Firstly, there is NO CURE, though there may be periods of remission, these are illnesses that are with sufferers for life.  The medications taken to control the disease control the inflammation include antibiotics, anti-inflammatories, steroids and immunosuppressants.  But the side effects from these meds include nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

It is also not just about the bowels, IBD can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

People with IBD have an increased risk of mental health issues, from depression to anxiety and stress, patients have to deal with self esteem and body confidence issues.  Fatigue can also be a huge issue which affects every part of patients lives.

20 to 45 % of people with ulcerative colitis and up to 75 % of people with Crohn’s disease will eventually require surgery in the form of colectomy (removal of the large intestine) ostomies, jpouch surgery and more.  This is on top of the multiple hospital visits that IBD patients will often need to deal with the often very painful disease.

 

fatigue and ulcerative colitis crohns ibd

 

Crohns and Colitis UK is a nationwide charity whose mission is to work with all those affected by Inflamatory Bowel Disease, in particular Crohns Disease and Ulcerative Colitis, to achieve a better quality of life, improve services, and ultimately find a cure.  They raise awareness, provide information and support, fund crucial research, and campaign and speak up for change.

I am a huge fan of Crohns and Colitis UK, I’m part of the Organisation Team for the South Yorkshire group and raise money for the charity on my Just Giving page (always open for any spare change you would like to throw their way!)

So please, keep talking, keep reading, keep sharing… IBD is not going away and the more we talk, the easier life is for everyone who has Crohns or Colitis.

Thanks for reading.  Please go take a look at my Facebook page and like, my twitter feed and follow and my instagram and follow there!

Let’s #stoppoobeingtaboo and never stop talking about IBD.

Sam xx

Its #PurpleFriday

This week is Crohns and Colitis Awareness Week and today is #PurpleFriday – so don your favourite PURPLE gear and get your selfie on with #purplefriday to help raise awareness of Crohns and Colitis.

Join the event on Facebook or head over to twitter and search #PurpleFriday

Purple Fridays Crohns and colitis

 

crohns and colitis awareness week

Want to make a difference? Donate here….

JustGiving - Sponsor me now!

Love Sam xxx

It's Crohns and Colitis Awareness Week

The 1st – 8th December is Crohns and Colitis Awareness Week, get involved by sharing, reading and talking.

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It’s the perfect time to #stoppoobeingtaboo (my favourite line as you may know!!) – let’s all talk poo. We all do it and noticing changes in your bowel habits can mean you need to see a doctor. If you have diarrhoea for more than a couple of weeks or notice blood or mucus in your stools, get to the GP and talk poo!

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260,000 people in the UK have Crohns or Colitis, there’s a good chance someone you know has one of these illnesses and I can tell you, living with Inflammatory Bowel Disease (IBD, the umbrella term for crohns and colitis) is hard. It’s an embarrassing, painful and at times heartbreaking condition. I talk openly on this blog about my journey but others might not find it so easy. So talk, be open, share…

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Tell me your IBD story…

You can get involved by reading IBD stories, sharing your own, sharing statuses and twitter posts that are using the #becrohnsandcolitisaware hashtag or mine which is #stoppoobeingtaboo.

For more information go to the Crohns and Colitis Website
Love Sam xxx

Medical Alert bracelets

I have been considering a medical alert bracelet for a while but haven’t seen one that I would actually WANT to wear till I stumbled upon the lovely Twisted Typist website and found this one.

medical alert bracelet for ibd jpouch

Medical Alert ID bracelets or necklaces are used for quick recognition of your medical conditions, allergies, medications, or treatment wishes leading to faster and more effective medical treatment.  Medical personnel are trained to first look for medical identification jewelry in an emergency and will immediately alert emergency medical professionals to your critical health and personal information.

It is questionable as to whether they are necessary for people with Ulcerative Colitis or Crohns unless you are on specific medication or have had surgeries.  It is a personal decision that can only be made by the person themselves.  Though it is recommended to wear a bracelet to alert caregivers that you have had colectomy and pouch procedures.

medical alert bracelets ibd pouch ostomy

I am still in two minds as to whether it is necessary but then I think about a scenario where I have an accident and am unconscious and alone, a medical alert bracelet would make sure the people who are in charge of my care know everything possible in order to avoid giving any medications or performing any dangerous procedures or operations.In the end I suppose it is up to you, if you are concerned have a chat with your doctor and see what their thoughts are.

I also saw this cute aluminium band that can be personalised with any writing you want and so could be used as alert jewellery.  If like me you have never seen any you like then do take the time to have good search, don’t limit yourself to the official ones, easy is fantastic for getting in touch with artists all over the world who make beautiful bespoke jewellery.

medical alert jewellery pouch ostomy ibd

 

Let me know what you think and post any recommendations in the comments!

 

Love Sam xx

Thank you

I just wanted to say a massive thank you to Experience Barnsley, especially Jemma and May for inviting me to talk at International Women’s day yesterday, to Mel Dyke for her warmth and support, to everyone who came to support me and to my husband Timm who filmed the talk for me and is always my biggest cheerleader.

Thanks to the awesome Katie Edwards who was a fellow speaker, thanks for joining me in silliness and Obama selfies and your brilliant talk, Admen and Eve. It was great to meet you!

Thanks to Lorna Warren and Anne Fay for their interesting talks too.

I had an amazing day and despite my nerves, I LOVED it and can’t wait to do it again!

The film is being edited now and so I’ll get it up on the site ASAP!

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Love Sam xx

Everything you need to know about IBD in one handy place

Information

IBD is Inflammatory Bowel Disease and should not be confused with IBS (Irritable Bowel Syndrome) which is a completely separate condition.  The two main types of IBD are Ulcerative Colitis (UC) and Crohn’s Disease.

Ulcerative Colitis (UC) and Crohn’s Disease are chronic (ongoing) conditions, which are not infectious

The most common age for diagnosis is between 10 and 40 (although diagnosis can occur at any age)

In both UC and Crohn’s there is a higher chance of developing either illness if you have a close relative who has the condition.

UC affects up to 120,000 people in the UK, that’s about 1 in 500

Between 6,000 and 12,000 new cases are diagnosed each year
Crohns Disease affects approximately 60,000 people in the UK, that’s about 1 in 1000

Between 3,000 and 6,000 new cases are diagnosed each year

sam cleasby ulcerative colitis

UC affects the rectum and sometimes the colon (large intestine). Inflammation and many tiny ulcers develop on the inside lining of the colon resulting in urgent and bloody diarrhoea, pain and continual tiredness. The condition varies as to how much of the colon is affected.  In addition, UC can cause inflammation in the eyes, skin and joints.  If the inflammation is only in the rectum it is known as proctitis

Crohn’s Disease can affect anywhere from the mouth to the anus but most commonly affects the small intestine and/or colon. It causes inflammation, deep ulcers and scarring to the wall of the intestine and often occurs in patches.  The main symptoms are pain in the abdomen, urgent diarrhoea, general tiredness and loss of weight. Crohn’s is sometimes associated with other inflammatory conditions affecting the joints, skin and eyes

For both illnesses the severity of the symptoms fluctuates unpredictably over time. Patients are likely to experience flare-ups in between intervals of remission or reduced symptoms.  The cause or causes have not yet been identified in either illness. Both genetic factors and environmental triggers are likely to be involved

For UC most patients will be treated with drugs, including 5-ASA therapies (eg: mesalazine) and steroids, to control or reduce the inflammation. Suppressants of the immune system (eg: azathioprine) are used to maintain remission. Some people need surgery to remove the whole of the colon if their symptoms do not respond to treatment with drugs. If the colon is removed, the small intestine leads to a stoma (opening on the abdomen or ‘tummy area’) for emptying of liquid stool (faeces). Or a replacement colon (ileo-anal pouch) is created by the surgeon reshaping the end of the small intestine

In Crohn’s the drug treatment is similar to that for Ulcerative Colitis. In addition, various antibiotics can be used; and a new range of drugs are being introduced called monoclonal antibodies (eg: infliximab). Crohn’s Disease can also be helped by special liquid feeds which rest the bowel. Surgery may be required to remove narrowed or damaged parts of the intestine.  Smoking has an adverse effect on Crohn’s Disease, so patients are discouraged from smoking

UC and Crohn’s are relapsing, remitting conditions. Most patients remain under hospital follow-up. Urgent consultation or hospital admission may be required for ‘flare-ups’.  There is no cure for UC or Crohn’s at present (except for UC, if the colon is surgically removed), but treatment can control the disease in most cases.

UC and Crohn’s can affect young people during their education or as they become established in their career. Most sufferers can be maintained in remission for most of the time and are able to lead a full working life. However, some who have severe disease do not achieve their educational and career potential.

This information is taken from Crohns and Colitis UK.

A stoma is an opening from either the digestive system digestive system or urinary system . This opening is the exit point for faeces or urine and is formed, surgically, to treat serious, often life threatening, diseases and medical conditions such as bowel or bladder cancer, inflammatory bowel disease (ulcerative colitis or Crohn’s Disease), diverticulitis, congenital abnormalities or injury.

There are 3 types of stoma – colostomy, ileostomy and urostomy.

• Colostomy
A colostomy is the result of an operation where part of the colon (large intestine) is brought out onto the surface on the abdomen.
Food waste exits the body via the colostomy rather than from the anus. This waste is collected in an appliance that is worn on the abdomen, over the colostomy. These appliances are usually referred to as stoma bags.
A colostomy operation might be done because a section of bowel has had to be removed due to bowel cancer, inflammatory bowel disease, or injury.

• Ileostomy
An ileostomy is the result of an operation where part of the ileum (the last section of the small intestine) is brought out onto the surface on the abdomen.
Food waste exits the body via the ileostomy rather than from the anus. This waste is collected in an appliance that is worn on the abdomen, over the ileostomy. These appliances are usually referred to as stoma bags.
An ileostomy operation is done to treat medical conditions such as bowel cancer, ulcerative colitis, Crohn’s disease, Familial Adenomatous Polyposis (FAP) or injury.

• Urostomy
A urostomy is the result of an operation to divert the flow of urine from the usual route. In most cases a urostomy is formed by a section of small bowel being removed from the digestive system, and then attached to the ureters (which are the tubes leading away from the kidneys).  This section of bowel is then brought out onto the surface on the abdomen to form a urostomy.
The urine will then flow from the kidneys, along the ureters, through the section of bowel and out of the urostomy.  As it is passed from the urostomy the urine is collected in an appliance that is worn on the abdomen, over the urostomy. These appliances are usually referred to as stoma bags.
A urostomy operation is done when the bladder has to be removed, or bypassed, due to cancer, congenital or neurological disorders or injury.

This information is taken from Ostomy Lifestyle.

Links

A list of places you can get help and support with Ulcerative Colitis and Crohn’s.  Remember that your first port of call for advice should be your Specialised IBD nurse, consultant or GP.  The internet has a wealth of information but don’t be an ass about it – ask the experts!!

http://www.ulcerativecolitis.org.uk/  Ulcerative Colitis Support and forum

http://www.crohnsandcolitis.org.uk – Crohn’s and Colitis UK aims to improve life for everyone affected by Inflammatory Bowel Disease (IBD), the most common forms being Crohn’s Disease and Ulcerative Colitis.

http://www.meandibd.org/ – Support for young people under 25 with IBD

0845 130 3344 – Crohns and Colitis Support line

http://www.inflamed-and-untamed.com/ – American IBD support blog

Disability Benefits advice – These guides have been specially written for people who have IBD and will help you through the minefield of applying for support.

Radar National Key Scheme – You may not be aware that you can purchase a disabled loo key along with a guide to over 9000 toilets in the UK.

http://www.the-ia.org.uk/ – The ileostomy and internal pouch support group.

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