Crohns and Colitis UK Archives - Page 2 of 3

Crohns and Colitis UK Dinner Dance

10th December 2015/4 Comments/in Blog/by sam

Back in September, I was invited to a dinner dance arranged by Stephanie Donnelly, a woman who set up a support group for people who have or are about to have stoma surgery. It was in aid of Crohns and Colitis UK and Breakaway and I was asked to be part of their fashion show at the Midland Hotel in Bradford.

It was a great event and they raised a lot of money for two great causes, it was an honour to be part of the day. Sometimes, being an IBD blogger can be lonely, you sit alone writing for a huge audience but don’t actually get to spend time with others and so attending events like this is a great joy.

I have never done a catwalk (there doesnt seem to be much call for a size 16 woman covered in scars to model!!) before but it was tons of fun and fantastic to be part of a runway filled with inspiring women who have or have had an ostomy. There was a Photo Booth and a swing band called the 309’s, all in all it was a fantastic night!

Thanks to Timm from The Picture Foundry for being my wonderful date and for photographing me in these shots.

Sam x

So Bad Ass goes to Parliament

20th November 2015/3 Comments/in Blog/by sam

On 4th November this year, I had the honour and privilege of going to Parliament with Crohns and Colitis UK to speak to MP’s and Peers about life with IBD. It was a fantastic experience that I will never forget and I hope to repeat again.

Raising awareness and being a health advocate is everything to me and my ability to share my thoughts through this blog, writing for other publications, writing my book and speaking at events all over the UK is something I am hugely passionate about. I LOVE what I do and I am so proud of my work. But going to speak to the people in power, those who run this country, who I can educate to then help thousands of their own constituents is just amazing.

I love the work of Crohns and Colitis UK and I am so proud to volunteer for them both on a local and national level and it was just a fantastic event to be part of.

I was quite unwell during the lead up to this event and on the day I was struggling with pouchitis but decided to push through as it was so important to me. I met the amazing Carrie and David Grant who are ambassadors of the charity and got to hang out with fellow IBD activists Charlotte Guinea and the Get Your Belly Out team. What was very interested and helpful was to speak to all these people about my own personal experiences and learn about theirs. Both Carrie and Charlotte also discussed how they were currently unwell and we had a good old whinge about how IBD sucks.

I spoke to many MPs from all over the country and was over the moon to hear that over 80 MPs and peers came through the doors to learn more about Crohns and Colitis Care; the newest information pack produced by CCUK to help patients understand what they have, what they are entitled to and how to get the best care.

The people I spoke to seemed genuinely interested and cared about their constituents, they asked many questions and we discussed how they can help. A big thank you to Sheffield MP Harry Harpham, who has been in touch through email and though he couldn’t attend on the day as he had previous engagements in Sheffield, sent his parliamentary researcher to find out more.

What struck me was the motivation and strength of the volunteers and ambassadors, as we talked about our current illnesses, medication and treatments, I was very aware of the sheer heroism it takes to attend these events and raise awareness when you feel so dreadfully ill. Ironically all three of us (Carrie, Charlotte and myself) all ended up back in hospital within a week of this event which gives you an idea of just how poorly we are. But when you look at these photos, it is easy to just see 3 smiling women. The reality is that we are 3 women who despite our illness, keep striving to make the world an easier place for those who follow in our health footsteps.

I hope that all those MPs and Peers really took on board what I, and other ambassadors, shared with them. I hope they learnt something and will know better how to help and support their own constituents and how to signpost them to Crohns and Colitis UK.

I know that on that day I carried in my heart the voices of all of you lot, your words of pain and struggle rang in my ears as I spoke to MPs, your concerns, your anger, your needs were voiced through my mouth and I hope I did you all proud as an advocate for all those with Crohns and Colitis.

Sam xx

Why aren’t doctors diagnosing IBD?

24th September 2015/3 Comments/in Blog/by sam

A few months after the birth of my second child, I began to notice blood in the toilet after I had opened by bowels, I ignored it for a while and then found I was going to the loo more and more. One morning I woke to a lot of blood and mucus in my pants, I ran to the toilet and it was like a massacre! I went to A&E convinced that something terrible was happening, I honestly thought I was dying. Doctors really brushed me off, suggesting I had piles and with an irritated tone told me that this was neither an accident nor an emergency and that I should see my GP.

I left shame faced and embarrassed, visited the GP who agreed that it was “just piles” and told me to use over the counter treatments. The next day I collapsed at home. I was taken in an ambulance to hospital where after admitting me and doing some tests, they diagnosed me with Ulcerative Colitis.

Around 300,000 people in the UK suffer from Crohn’s or Ulcerative Colitis and figures suggest the disease is on the increase. According to the Health and Social Care Information Centre, the number of 16- to 29-year-olds receiving hospital treatment for the condition has risen 300% in the past 10 years, to almost 20,000.

So why is it that doctors are struggling to diagnose IBD?

I suppose GP’s and doctors see a lot of abdo pain and diarrhoea and they can’t assume it is always down to Inflammatory Bowel Disease. IBS (Irritable Bowel Syndrome) is very common with some stats suggesting 15-25% of the population having some symptoms, this along with stomach bugs, food poisoning and problems like haemorrhoids could be throwing them off course, but it is the patient that suffers when they don’t get diagnosed quickly. It is a problem I hear a lot, many people get in touch and tell me that they were very ill before they got the correct diagnosis.

The difficulty also lies in the embarrassment factor, people don’t like to see their doctors when it comes to matters of the bum, especially if that bum has diarrhoea, incontinence, blood and mucus loss. It takes a lot to speak out about these problems and then if you either aren’t believed or are misdiagnosed then it takes courage to go back and ask for a second opinion!

Treatment for IBD sometimes requires a trial and error approach, depending on the severity of the flare up and how the patient responds, it can take some time to get the balance of medication right. For 20% of Colitis patients and 60-75% of Crohns patients, surgery will become necessary and sometimes when either symptoms have been ignored or the patient has been misdiagnosed, the disease has progressed so far by the time of diagnosis that surgery is the only option.

That is why I work hard to #StopPooBeingTaboo to ensure that people are aware of the symptoms and have the courage and strength to speak out and get the best treatment for them as soon as possible. When I was diagnosed, I had never heard of Ulcerative Colitis and it was an absolute shock. If I had known more then perhaps I would have spoken out sooner and been more confident in asking for a second or third opinion when my condition was brushed off twice!

I truly believe that the more we all speak out, the easier we make it for those who follow in our path. Believe it or not, I do feel embarrassed sometimes when I tell you all about my incontinence accidents, or when I explain in detail about my surgeries! I do feel that hot faced shame when I think about everyone reading my words, but I do it to make a difference. I wish I could have read the truth from someone else when I was diagnosed and so I hope that some good can come from my illness.

Crohns and Colitis UK are a national charity who offer tons of support and advice, if you have been diagnosed they should be a port of call to educate yourself and for any support you need. They say “IBD symptoms vary from person to person – and usually over time. IBD is a chronic (long term) disease and if you have IBD you will probably have periods of good health (remission) and then relapses or ‘flare-ups’ when the symptoms get worse.

The main symptoms are:

abdominal pain
diarrhoea (sometimes mixed with blood, especially in Ulcerative Colitis)
tiredness and fatigue
loss of appetite
weight loss
abscesses and fistulas (in Crohn’s)
swollen joints, mouth ulcers and eye problems”

If you are having any of these symptoms and are concerned, you should see your GP. If you are have a few of these symptoms and not being heard, then ask for a send opinion, print out info from CCUK and take control of your own health.

Doctors are only human and are not infallible, this isn’t about slating them but about accepting that perhaps diagnosis rates aren’t as good as they can be and so as patients we must be our own advocates, make sure we are informed, educated and brave enough to speak out.

Sam x

World IBD Day – 19th May 2015

18th May 2015/2 Comments/in Blog/by sam

I’d like to ask all you readers who don’t have IBD a question. Before you read my blog, did you know anything about Crohns Disease and Ulcerative Colitis? And a second question, since you shared my links or spoke about this site, how many people you know have admitted they suffer with Inflamatory Bowel Disease?

People tell me that my site and other IBD blogs have made them realise that they have friends, family member and colleagues who have Crohns or Colitis and that is why I keep writing! The more open we become about these types of illness, the better we can support those with IBD. One of the toughest things to deal with is the isolation and embarrassment, and that is why my aim for this blot has always been to #stoppoobeingtaboo.

Every 30 minutes, someone in the UK is diagnosed with Crohns Disease or Ulcerative Colitis and that is why awesome charity Crohns and Colitis UK are using World IBD Day on 19th May 2015 to raise awareness and enable more patients to access the best care possible. With at least 300,000 people in the UK living with Crohn’s or Colitis, this means 1 in 210 people are living with these unpredictable, life-long and potentially life-threatening conditions.

This is why I am proud to support Crohns and Colitis UK and proud to share my experiences, make a difference and #stoppoobeingtaboo all over the world!

On World IBD Day, Crohn’s and Colitis UK are launching ‘My Crohn’s & Colitis Care’, a patient guide to the top 10 essentials of a good IBD service. This practical resource has been developed with the support of patients, healthcare professionals and health organisations, and is the patient companion to The IBD Standards². The aim of the new guide is to empower people with IBD to get the best from their local health service by working in partnership with their healthcare team.

So what can you do?

You can wear purple and ask others to do so too and make a donation to Crohns and Colitis UK either by text. You can donate any amount, to donate £5, you would Text PURP19 £5 to 70070 Alternatively, you can make an online donation at justgiving.com/crohnsandcolitisuk

I thank every one of you who reads my blog, you are amazing and if every one of you could donate just £1 it would make a HUGE difference to the lives of IBD sufferers. If you can’t manage to donate then please just share these posts and get talking, you can make a difference by just speaking out and helping me to #stoppoobeingtaboo

Stay purple!

Sam xxx

Charity Haircuts!

15th May 2015/3 Comments/in Blog/by sam

As you may know, my son Thom and his friend Sonny decided to have their long beautiful locks chopped off to raise money for Crohns and Colitis UK, a charity that has supported me during my illness, surgeries and recovery. Well, the day arrived and thanks to the wonderful Savills Barbers in Sheffield, the boys got some amazing haircuts and I am over the moon to announce that they have raised £381.22 (there is some more to come that hasn’t been put in the account yet!)

I want to thank the boys for coming up with the idea and going through with a huge change to make a difference to other people. I am so proud of them both and think it is bloody wonderful that two ten year old boys are thinking of others. And thank you so much to Joth and the boys at Savills for donating their time and talent to make our boys look so handsome.

If you have already donated, THANK YOU! If you haven’t then you still have time to add to the account. Every pound counts so please consider donating.

I photographed the boys big day, enjoy!!

My boy is raising money for Crohns and Colitis UK

6th April 2015/0 Comments/in Blog/by sam

My youngest son Thom is 10 and has beautiful long hair that he has been growing for a few years. He has decided to raise money for Crohns and Colitis UK by cutting all his hair really short!

I have Ulcerative Colitis and in 2013 I had a colectomy and ileostomy, in 2014 I had more surgery to form a J-Pouch. It has been a really difficult few years and as family we have had a lot to deal with.

A chronic illness doesn’t just affect the person who is ill, the ripples spread through the family and friends and my children have had a stressful and upsetting time seeing me go through surgeries and treatment. I am so proud of the way they have dealt with it all and couldn’t be happier that Thom has decided to raise some money for CCUK.

Crohns and Colitis UK provide advice, support and help to the almost 300,000 people in the UK with IBD – they are a great charity and we are pleased to raise money for them.

A message from Thom

“Please donate some money because my mum has suffered with lots of pain with her surgeries. It’s been very hard for me because I didn’t get to see her much and when I did she was feeling ill and it made me sad.

Im cutting off my long hair to raise some money for the charity that helped my mum so they can help lots of other people too.

Love Thom x”

He is hoping to raise £100 and so please head over to his Just Giving page now and give what you can!

Sam xxx

Crohns and Colitis – more than 'just' a poo disease

3rd April 2015/16 Comments/in Blog/by sam

I talk a lot about Crohn’s Disease and Ulcerative Colitis, trying to demystify the diseases that come under the umbrella of Inflammatory Bowel Disease because being diagnosed with these things can be confusing, scary and very upsetting. I try to be positive yet honest, to share my journey, the ups and downs and try and describe my life without scaring the bejesus out of any newbies.

The LAST thing I want to do with this post is to scare anyone, but what I do want to discuss are the realities of IBD. For many people, the conditions can be controlled really well with medications, with long periods of remission being achieved but around 2 in 10 people with UC and 7 in 10 people with Crohn’s will have to have some form of surgery in their lifetime. All have to deal with the medications and treatments for the diseases having side effects, some of which can potentially be life threatening.

Initially, especially if the UC is mild, medical treatment is through aminosalicylates (or 5-ASA drugs) such as mesalazine or sulphasalazine, immunosuppressant drugs, such as azathioprine or mercaptopurine may be prescribed for people with UC who continue to have frequent flare ups or ongoing symptoms. For more severe UC, treatment with steroids given intravenously may be necessary. If this does not work, you may be given another immunosuppressant, ciclosporin. Biologics such as infliximab are now also used for severe UC.

Treatment for Crohn’s also depends on which part and how much of the gut is affected. Mild inflammation may be treated with steroids or 5-ASAs such as mesalazine or sulphasalazine. Immunosuppressants such as azathioprine, mercaptopurine, or methotrexate, may be used for more persistent Crohn’s. Biologic drugs, such as infliximab or adalimumab, are available for more severe Crohn’s Disease which has not responded to the usual treatments.

This information comes from Crohns and Colitis UK, a great charity with tons of information and support. Do take a look at their website www.crohnsandcolitis.org.uk

All these medications, especially when you move from mild to moderate or severe disease have side effects and some of them are life changing, life threatening and pretty scary. The medication we take to make us better can be almost as difficult to deal with as the disease itself. Immunosuppressant drugs do exactly what they say on the tin, they suppress the immunity which leaves the patient open to all sorts of other diseases and infections.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Other meds have high risks of allergic reaction, cause weight gain, moon face, hairiness, increase your risk of cancer, can cause issues with mental health and so many other side effects. I don’t want to scare people out of taking the medication, but I do want to speak honestly in the hope that others will understand the impact of IBD.

Then there is the scopes, the procedures, the surgeries… All of which carry risks. And I haven’t even mentioned that IBD sufferers have a higher chance of getting bowel cancer.

I know this is all upsetting and scary, and I promise you that my intention isn’t to be frightening people. But there isn’t a month that goes past without seeing another member of the IBD community has passed away, the tributes from friends and family filling my Facebook and twitter feeds. I think it is important for people to realise that IBD isn’t “just” a poo disease, that what we face every day through the illness itself, the medication, the diagnosis tests and the treatments is hard work.

This isn’t about having a “bit of diarrhoea”, it can be life threatening and living with Inflammatory Bowel Disease is so tough at times. It isn’t the same as that time you had a tummy bug, you don’t understand because your aunty’s neighbour’s sister has IBS when she eats milk. IBD is serious. It is life changing and I just wish more people could understand the gravity of living with this chronic illness. There is no cure, it is a lifelong condition that can affect every single part of your life.

And the sad fact is that people die from it. From the disease itself as well as from side effects from medications and complications from treatment and surgeries.

So next time you hear someone talking about Crohn’s or Colitis, please try to understand that it is not an easy cross to bear. People with IBD truly are warriors, they have to be brave every single day to live with diseases that not only can be physically painful but can also be emotionally and mentally crippling. The embarrassment and humiliation of a “poo disease” is isolating, but the burden of self care, of learning how to manage your illness and medication independently is tiring and mentally draining. These things teamed with physical pain, incontinence and a socially difficult disease make life tough.

When you see us smiling, laughing and being ‘normal’, know that this is DESPITE dealing with all these issues. So if you know someone with IBD, please try to be understanding, ask questions, care, love and try and make life just a little easier through your own kindness.

incisional hernia after jpouch

And if you are the person with Crohns or Colitis, I am sorry if this post is a tough one to read. I’m sorry that you have to deal with all this. But don’t let it crush you, be strong, fight on and allow the illness to teach you lessons. Live harder, when you have times of remission, when your meds are working or when your surgery and treatment is helping, do the things that you want to do, follow your dreams. When times are tough and your health is suffering, be kind to yourself. Allow yourself time to heal, take the meds and follow your treatments, be strong and just keep swimming (thanks for that life lesson Finding Nemo!).

I apologise once more for such a heavy post. Please don’t let this fill you with fear, let it fill you with information and the desire to find out more. Take control of your health by finding out as much as you can about your own illness and remember that IBD doesn’t define you, it is a small part of who you are and you are an amazing, unique and wonderful human being.

You can get some great advice and support from Crohns and Colitis UK and also IA Support… Click on the images below to go to their sites.

Remember that your doctor is always the best place to get advice on your own personal circumstances and that though IBD is tough, we all still have the ability to stay positive and to make the most of the hand we are dealt.

Love Sam x

I've been diagnosed with Ulcerative Colitis… Now what?

18th March 2015/13 Comments/in Blog/by sam

So you have just been diagnosed with Ulcerative Colitis… Now what? Well you are probably a bit shell shocked and confused as to what the hell this disease is. You are frantically googling and recoiling in horror at the words ‘increased risk of cancer’ and your mind is boggling with all the different treatment options. I know this feeling, as this was me over ten years ago.

I had been losing a lot of blood and had bouts of diarrhoea but as my daughter was only 9 months old I thought it was probably piles. But it got worse and worse till I was losing so much blood, the toilet bowl looked like a massacre had taken place. I ended up passing out, I was so anaemic and dehydrated from the bleeding and diarrhoea and then taken by ambulance to the hospital, after a lot of tests I was eventually diagnosed with Ulcerative Colitis.

I was given a prescription and sent on my (not so) merry way feeling completely adrift and unsure as to what I was facing. Initially I was happy as I thought it was going to be a diagnosis of cancer, but suddenly I had to learn about this disease that has no cure and that would affect me forever. I was devastated.

Over the next few years, I slowly learnt more and more about the different drugs, the side effects, the flare ups and remission periods. I eventually discovered the support of IBD nurses and learnt that I had to take control of my illness, I had to learn how to adapt my meds according to how I felt. It was a very difficult task, before this point if I had ever been ill, I would go to the GP, get a diagnosis, a prescription, take the pills for a set time and then get better. Suddenly I was told to self manage my illness, to know to up the dose of some drugs at certain times, to know when to call for help and when I should just deal with it. It was a frightening and confusing time.

The biggest change for me was discovering that the hospital had an IBD nurse. This took a few years as I discovered three years in that I wasn’t even under the care of the gastro team at the hospital! (But that is a WHOLE other story). As a sufferer of IBD (either Crohns Disease or Ulcerative Colitis) in the UK you should have access to a specialised IBD nurse. This is someone who you can see regularly, have phone contact with and who is there to support you through your illness. The team at my hospital became a lifeline, a friendly voice on the end of the line when I was confused and needed support or advice. I am amazed at how many people I speak to that do not know they can see a specialised nurse!

I know you are facing this terrifying time, but you have to take control. You have to educate yourself, find out as much as you can and be your own advocate so you can ensure you are getting the best treatment. It is easy for patients to get lost in the system, the NHS is amazing, but it has it’s issues due to the pressures put onto it and so you must make sure you are playing your part and not being a bystander in your own health.

All the different medication options are mind boggling, it is so confusing to know what is the best course of action. Take advice from your doctors, registrars and consultants, listen to your IBD nurse, but do your own research too. Do not be afraid to ask questions, it is OK to be unsure and to remind medical staff that they may deal with this every day, but for you it is new and overwhelming.

If you are unhappy with your care, you can ask for a second opinion. Simply go to your GP and talk through your options, after ten years under one hospital and feeling many times that I was unhappy with my care, I decided to move hospitals. It was the best decision I made and under the new teams at a different hospital I am so happy. I feel supported, informed and cared for.

When I was first diagnosed, I had never heard of the disease let alone know anyone who had it, there was little online and I felt so isolated and alone. I was embarrassed to talk to my friends and family about it as I didn’t feel comfortable telling them about my bum, blood and shit! (Oh, how times have changed, eh?!)

At times of flare ups I would lock myself away, not go out or visit friends. On one occasion when I ventured out to a friends house during a flare, I stood up from her dining table after having a coffee to see that I had bled so much that it had gone through my clothes and onto her furniture. I was absolutely mortified. How could I tell her that blood from my arse had leaked onto her (thankfully plastic) chairs? Instead I covered it with my bag, grabbed some cleaning wipes from her kitchen side and said I had spilt my tea. Then I left.

Remembering this event now, I still feel flame cheeked and filled with embarrassment. I went home in floods of tears, vowing never to go out during a flare again.

I later spoke to the friend, who thought she had upset me as I left so suddenly, I admitted what had happened and she was so warm and kind, she hugged me and reminded me she was a mum too and was used to dealing with body fluids. She made me promise that if it ever happened again, that I would just tell her and that it just wasn’t a big deal. She reminded me that I had once cleaned up her sick after a bit of a crazy night out and let me know that all those things I was worrying about, that she would be disgusted, or would laugh, or that she would not want me round, that they were in my head and she was my friend and would always be there for me.

My main message in this post is that you need to speak out, you need to talk to someone about your illness. The biggest symptoms of IBD in my opinion are shame, embarrassment and isolation. I swear that talking to your loved ones will help, they are feeling as bewildered by your diagnosis as you are and probably feel upset, worried and useless. You have to learn about your illness so you can help your loved ones understand too.

There are some amazing websites about now with so much information, as well as lots of blogs and youtube channels, Facebook groups and people like me who will openly talk about life with IBD. Utilise these options for information and support, you are not alone, there are almost 300,000 people in the UK with IBD and 5 million worldwide. I know it feels like your world has ended, that the life you thought you were going to lead has gone, but I can tell you this, you ARE NOT ALONE. There are many out there feeling the same as you and you can learn to LIVE with IBD, it might change your path but it does not end it.

Take a look at charity Crohns and Colitis UK, a great source of advice, information and support and also check Facebook groups, forums and blogs for support. One friendly hint is to remember that the ill people are mainly the ones talking online, the fit and healthy ones are off living their lives, so just be mindful that forums are not the best overview of the IBD population!

I know you see many stories, mine included, that talk about surgery, ostomy bags and all many of scary things. Around 1 in 4 people with Ulcerative Colitise will need some form of surgery (more with Crohn’s disease) and so it is an issue, but do remember that 3/4 of people with UC will not have surgery and will be managed with medication. Whatever path you have to go down, living with a chronic illness such as UC is a lifelong issue. It will change some aspects of your life but this diagnosis isn’t the end, it is just a change. You can still lead a wonderful, full and happy life, I know it can feel, especially during a flare, that your illness feels all consuming and that it takes over every aspect of your life, but stay strong.

I have been writing about life with Ulcerative Colitis since 2013 and so do take a look through the site, specifically this post of the A – Z of IBD that has some good information and take a look at the So Bad Ass Facebook page and twitter page to chat with other people with IBD.

You can always contact me if you want to chat privately, but please remember that Im not medically trained and so my advice is always anecdotal and from personal experience, if you have any urgent medical issue, you should ALWAYS speak to your doctor or nurse and NEVER just take advice from the internet!

Love Sam x

Crohn's and Colitis South Yorkshire Dinner Dance

17th March 2015/0 Comments/in Blog/by sam

I am involved in the Crohns and Colitis UK South Yorkshire group and in October this year, we are holding a super exciting dinner dance (ticket info available soon) at Oakwell Stadium in Barnsley. There will be live music, a DJ, guest speakers, footballers and a raffle (plus extra things to be announced closer to the time).

If any of my amazing followers can help with either free stuff, raffle prizes or donation of time, that would be AMAZING!!

Crohn’s and Colitis UK are a charity close to my heart and we want to raise a lot of money for research and support but also allow people to make connections with others in South Yorkshire and to raise awareness of Crohns and Colitis.

The volunteer group is entirely run by people with IBD or their family members and so as you can imagine, it is difficult when we are all dealing with our own health issues, but we do it to make a difference, so PLEASE get involved.

If anyone can help or donate a prize, then please get in touch.

You can find out more about Crohns and Colitis South Yorkshire on the site here, like them on Facebook, or follow them on twitter.

Sam x

Why we need to keep talking about IBD

5th January 2015/17 Comments/in Blog/by sam

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!

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.

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

Tag Archive for: Crohns and Colitis UK

Crohns and Colitis UK Dinner Dance

So Bad Ass goes to Parliament

Why aren’t doctors diagnosing IBD?

World IBD Day – 19th May 2015

Charity Haircuts!

My boy is raising money for Crohns and Colitis UK

Crohns and Colitis – more than 'just' a poo disease

I've been diagnosed with Ulcerative Colitis… Now what?

Crohn's and Colitis South Yorkshire Dinner Dance

Why we need to keep talking about IBD

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Tag Archive for: Crohns and Colitis UK

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Interesting links

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Categories

Archive