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Why aren’t doctors diagnosing IBD?

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?

sam cleasby ulcerative colitis ibd ileostomy surgery

 

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!

ibd periods menstruation sam cleasby so bad ass blog

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

Pancreatic Cancer Petition

I don’t usually share petitions on the blog but I got a message from Ellie this week with a plea for me to share this one and I just couldn’t say no.

“Hi Sam,

I’ve been following your blog since I was diagnosed with Ulcerative Colitis last December and if it hadn’t been for your straight talking and awareness campaigns I think I’d have found it harder to accept.

Unfortunately since then I’ve been diagnosed with pancreatic cancer and started chemotherapy 2 weeks ago. As I’m sure you are more than aware that there is a link that someone who has an IBD has the increased chances of getting pancreatic cancer. Sucks doesn’t it!

I found out today that the only life extending drug for people with advanced pancreatic cancer has been scrapped from the CDF list which means it will not be available for free on the NHS. There is a petition.

Please, please could you share this with your followers, not just for my sake but for everyone who is at risk of or has this awful disease. Thank you so much. And thank you for everything you do to raise awareness of these invisible disabilities.

Yours sincerely, Ellie x”

 

pancreatic cancer petition

 

Thank you so much Ellie for bringing this to my attention, the petition says this…

“On 4th September 2015, NHS England made the shocking decision to remove life-extending drug Abraxane®, one of the first new drugs for treatment of pancreatic cancer in 20 years, from the Cancer Drugs Fund. This reduces an already limited choice of treatment options for patients in England.

Abraxane could have a considerable impact on one year survival rates of pancreatic cancer in the UK, which are the worst in Europe. Trials have shown that in some cases, the drug can extend a patient’s life to over 2 years, allowing patients with advanced pancreatic cancer to resume a normal life, taking part in everyday activities, and more importantly having valuable extra time with their loved ones.

NHS England and the Department of Health need to review this decision immediately.”

Please go sign now.

Cancer affects so many people, but those of us with IBD have a higher risk of cancer and we need to stand together and fight for those of us who are already suffering.  You can follow the group championing this petition over on Facebook and get involved.

So please, sign.

 

Sam x

 

 

The NDA’s and #IBDnotIBS *UPDATED*

Firstly, I want to thank every single person who voted for me and endorsed me in the National Diversity Awards 2015.  I was nominated and shortlisted as a Positive Role Model in the Disability category.  It was an amazing thing to be shortlisted and to read through the hundreds of nominations made me cry out my own body weight in tears!  To know that I made a difference to so many of you was just mind blowing and that acknowledgment of the last two years of my life was amazing.

For two years I have run this blog.  I have spoken at events up and down the country.  I have been on countless radio shows, television programmes and in pretty much every national newspaper.  I have done all this through the toughest two years of my life.  In 2013 when my large intestine was removed, I was at my lowest ebb, I couldn’t imagine how life could ever improve.  The past two years have seen three major surgeries, months of rehabilitation and healing, so many hospital visits and stays, my body, mind and spirit have taken the hardest battering and life has been, quite literally, shit.

sam cleasby national diversity awards nda ibdnotibs blogger

Yet I carried on.  Raising awareness at every step, talking about the most intimate and embarrassing details of my life because I want to make a difference to others, I want those who follow in my path to have it a little easier than it was for me.  So on Friday night as I attended the National Diversity Awards, it felt good.

As we got to my category, the nominees were read out.  My heart was pounding and I felt sick with nerves, every message I have received was running through my head as I thought about how, even in my darkest times, I had managed to make a difference to so many and now here I was, in a posh awards listening to my name and accomplishments being read to the hundreds of people in the room!!!

‘Sam Cleasby has worked tirelessly to raise awareness of IBS’

Wait, what?!!?!! No, fuck, they got that wrong! I don’t have IBS!!!

sam cleasby national diversity awards nda ibdnotibs blogger

I didn’t win.  That was ok as I was up against some of the most extraordinarily inspirational people.  Just to be in their category was a blessing.  I was just honoured to be there!

But IBS?  I felt hot and embarrassed.  Tears were in my eyes as I realised that the past two years had done nothing to raise awareness when the National Diversity Awards couldn’t even get it right!!! I looked down to the programme given to all attendees and read the passage about myself.  There it was again.  IBS.  And worse still, they wrote that I had shown off my jpouch.  My internal jpouch?! Nope! I do not remember spreading my bum cheeks and inserting a camera up my anus for a photo shoot!!!!

sam cleasby national diversity awards nda ibdnotibs blogger

My heart sunk.  I realised that despite all this talk of “under represented groups”, all the glitz and glam and celebration of diversity, all these awards had let people with IBD down.  I gulped back the tears at the thought that I had let you all down.  All the people I fight for, every person who has to live with this most debilitating condition, who face agony, bleeding, fatigue, diarrhoea, incontinence, embarrassment, humiliation, all of those people who I stand up for, they were all let down that night.

For some, it may seem like a small thing, but imagine if they had mistakenly called a group of Muslims, who had campaigned tirelessly for the rights of Muslim people, Sikhs?  Imagine if they had used the wrong term for a transgender person? Imagine if they called out the wrong race for those fighting for their under represented group?  Would those things be unimportant?

sam cleasby national diversity awards nda ibdnotibs blogger

IBD is a tough disease, it is life long with no cure, patients have to take medication that is at times so harmful, surgery is commonplace and it sometimes kills.  IBS is a condition where sufferers have diarrhoea, it is miserable but not life threatening in any way.  There is confusion sometimes, and that confusion is really unhelpful to those with IBD as it lessens the importance and seriousness of the disease when it is confused with something far less dangerous to health.

I felt that there was no way the judges and the company as a whole could have read my blog to make these mistakes, how could they have read hundreds of nominations of mine yet got the name wrong? How could they be so confused over my jpouch when I had sent them all the information?  I felt done over.  I felt that I never had a chance of winning as they hadn’t even understood my illness so how could I have had a chance?  Well at least they got the cost of the tickets, hey!

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I went back to the hotel room totally deflated and defeated.  The past two years of my life felt pretty worthless at that time and I had a big old cry at the shittiness of the situation.  Then I wiped my tears, pulled up my big girl pants and told myself to suck it up, buttercup!  This mistake wasn’t going to ruin my passion.  It wasn’t going to make me feel worthless.  It was going to make me stronger, make me shout louder and make me tell EVERY PERSON IN THE WORLD THAT I HAVE IBD, I AM NOT ASHAMED AND I WILL KEEP RAISING AWARENESS, I WILL STOP POO BEING TABOO!

sam cleasby national diversity awards nda ibdnotibs blogger

It may not ever be trending, it might not make for a sexy headline, it might not be caught onto by the PC bandwagon, but I will never stop fighting for every one of the 300,000 people in this country who have IBD.  I will keep going and shout louder than ever before!

I did a video on the night of how I was feeling, it would be great if you could go take a look and share with #IBDnotIBS

You can find it on the So Bad Ass Facebook page here.

 

The response from the NDA people has been very underwhelming, the owner replied on my Facebook page saying that they only used info from the nominees, suggesting I had got my own illness wrong.  This is the only contact I have had, no emails, no phone calls.

sam cleasby national diversity awards nda ibdnotibs blogger

I feel bad for slating the group as on the whole they do an amazing thing, the people I met on the night were all so inspiring and to be in a room with so many people who just want to do good was fantastic.  But they got this wrong.  And they don’t seem to care.  And that breaks my heart.

So I want to end with an apology to you all.  I am so sorry that despite my best efforts, those of us with IBD were let down on the night.  I am sorry that all this effort didn’t help to raise awareness amongst all these people, I am sorry that my voice wasn’t louder, my fight wasn’t stronger.

But I promise you, this will only make me fight harder.

 

Love Sam xxx

 

 

***UPDATE***

I received an email apology that said

“After investigating into this, an extract from your original nomination was used to contribute to your profile, and it has come to light a number of mentions of IBS in your votes may have caused our writer to make this error. However, upon saying this we take full responsibility for this mistake, a thorough proof read should have been carried out in order to avoid this inaccuracy from happening.”

They also offered for me to write for their blog to raise awareness, which I will tell you all now, I have turned down. 

I do charge companies for my writing and blogging, I do this to fund my time that I can then put into volunteering for charities and supporting people with IBD full time. I don’t have the time or inclination to write for this company for free.

For the record I had to send them an awful lot of information and even if people mentioned IBS in their nominations and endorsements, it should have been clear from reading my blog and all that info I sent over that I have IBD. The jpouch comment, I have no idea on!!

I am still very embarrassed, upset and angry about this whole thing. I feel like I can’t have been seriously considered for the award if they didn’t even read the blog in which case it was an awful waste of money and time to go to Liverpool (tickets were expensive, hotel room and travel were all covered by myself) and sit in a room full of people who were told completely incorrect information about me and therefore no awareness was raised that night!

I pointed out that nothing has been said publicly and then they issued a public apology.  That had a BIG mistake in it…

nda get illness wrong

They said I had IRRITABLE BOWEL DISEASE. That’s not even a disease!!!!!

WTF.  An apology for getting my disease wrong, where they then get my disease wrong again???

 

I let them know their mistake and they changed it.  Only they got it wrong AGAIN!!!

nda get illness wrong

 

They changed the I in both IBS and IBD to INFLAMMATORY!! Its like they don’t care at all, right???

Third time lucky and with the help of some irate folk who tweeted and emailed them, they managed to get it correct.

nda get illness wrong

 

Though there is still no mention of the fact they said I posed with my Jpouch out!!

I have had a phone call to apologise, but to be honest, it is as I tell my kids.  Sorry is just a word.  Their actions show an inability to listen or learn and a total lack of understanding.  The fact that the last two changes came AFTER the phone apology says a lot.

If you mess up, then make sure your apology doesnt have the SAME MISTAKES AS THE EVENT YOU ARE APOLOGISING ABOUT!!!

I don’t feel any lesson has been learnt here and I am fuming. Their initial email said that “a thorough proof read should have been carried out in order to avoid this inaccuracy from happening.” yet they then made mistake after mistake after mistake so they didn’t learn any lessons there.  It feels like an absolute piss take and I am just in disbelief.

I was so excited about being nominated and I appreciate the time that all of you took to endorse me and say such wonderful things, but I wish I had never been nominated.  And that makes me so sad.  I wish I hadn’t wasted my money in buying tickets, paying for a hotel and all the costs associated with traveling to Liverpool and having the day off work.

I feel embarrassed, hurt and angry.  And that sucks.

 

Sam xxxx

 

National Diversity Awards – I got shortlisted!

I am thrilled to say that I got shortlisted for the 2015 National Diversity Awards as a Positive Role Model in the category of Disability!!  The winners will be announced Friday, September 18th at Liverpool’s Anglican Cathedral at a lovely awards do that I will be attending along with Timm as my cheerleader/chief tissue holder!

I am absolutely blown away to be shortlisted, I felt like a winner just being able to read all the amazing comments from everyone who nominated me.  Shall I tell you a secret? I have them in a file on my computer and on those days when everything feels too tough, when I want to hide away and not speak to anyone, I read them and remember why I do what I do.  Why I write about the most intimate details of my life, why I keep going.  You lot are just the best readers in the world, the responses I get on here, on Facebook, twitter or by email just mean the world to me and I want to take the time to thank every one of you.

“The National Diversity Awards ­ a prestigious black tie event, which celebrates the excellent achievements of grass- root communities that tackle the issues in today’s society, giving them recognition for their dedication and hard work.

The National Diversity Awards will be held at Liverpool’s Anglican Cathedral, September 18th 2015 where there are several award categories including Positive Role Model and Community Organisation Awards, which will be split into five categories including race & religion/faith, age, disability, gender and LGBT. Other awards include the Entrepreneur of Excellence Award, Diverse Company of the Year Award and Lifetime Achiever Award.

Charities, role models and community heroes will be honoured at the ceremony showcasing their outstanding devotion to enhancing equality, diversity and inclusion; thus embracing the excellence of all out citizens irrespective of race, faith, religion, gender, gender identity, sexual orientation, age, disability and culture.”

national diversity awards 2015 sam cleasby

 

Poo is a difficult subject, but it is the thing that I talk about the most and what spurred me to start this blog.  To speak out for the 300,000 people in the UK with Inflammatory Bowel Disease and to Stop Poo Being Taboo.

From there I began to think about all the invisible disabilities that people face and the isolation and anxiety that comes with it.  As  a society we are getting better about talking about disability, but there is an awful lot more to be done, especially for those who have a condition that can’t be easily seen.  And that it why I started the More Than Meets The Eye campaign, to get people talking about invisible disabilities.

I am really proud of all that I have achieved so far, but I would love to make a difference to so many more people.  Of course, I would love to win this award, but I already feel so blessed just to be acknowledged amongst the amazing people who have also been shortlisted.  Winning would be a bonus, right now I am just overwhelmed that this girl from Sheffield has done something to help so many.  Two years ago as I lay in a hospital bed, feeling that life as I knew it was over, I couldn’t have dreamt where I would be headed.

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Thank you so much to every one of you who voted.

You’re all awesome

Sam xxx

 

 

 

10 GREAT things about life with Inflammatory Bowel Disease

We all know that life with any chronic, lifelong illness sucks,  when that illness is Inflammatory Bowel Disease in the form of Ulcerative Colitis or Crohn’s Disease, it is shitty! (Pun definitely intended).  I am as guilty as everyone else in writing about all the negative aspects of this, I have spent two years doing just that, but I thought it time to write about the great things…

 

1. Regular new underwear.  Well, when you end up abandoning pants in sanitary bins because you shit yourself, you have to replenish the stock! Make it some nice ones.

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

 

2. You know more about the workings of the digestive system than most people.  Including doctors.

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3. You sound like you’re carrying maracas in your bag due to all the meds rattling around.  Make the most of it and shimmy as you walk.

chronic illness funny

 

4.  You become the Poo Oracle of all your friends.  Revel in the power of knowing about all your mates poo stories.

poo taboo everybody poos so bad ass sam cleasby

 

 

5. You know your way around your local hospital and so never get lost.  You have been in most wards at some point, you could draw a map!

sam cleasby author so bad ass sheffield

 

6. You have an excellent excuse to eat crap, beige food when you are in the mood.  Yes, you need a mcdonalds, everything in there is on the low residue diet!

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7. You have a sense of humour.  Sometimes sick, sometimes inappropriate but when you have been through so much, you have to learn to laugh or you would cry.

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8. People get so used to you looking rough that when you are well and scrub up, you look amazing and people comment.

too ugly for love ostomy bag sam cleasby so bad ass

 

9. You have the ability to teach those around you.  About illness, invisible disability, compassion, love and positivity.  Use it.

ibd periods menstruation sam cleasby so bad ass blog

 

10. You know that life is precious.  You have been through hell and are still standing! You know that no matter how tough life is, it is ALWAYS better than the alternative.

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Sam x

 

Feeling like crap but carrying on regardless

It’s ironic that today on World IBD day, I spent the morning at the GP surgery. For a week or so I’ve not felt quite right, increased toilet visits, urgency and a couple of accidents. I have also been struggling massively with joint pain.

I had a Twitter chat with IA Support (isn’t social media brill?!) who suggested possible Pouchitis and recommended I visit the doctors. I put it off as my anxiety over being taken back into hospital kicked in and I wanted to hide from any medical professionals but then yesterday my son held my hand and it hurt so much I had to let go.

I realised it was probably time to call the GP…

So with a temperature, bad joints, increased poos with urgency and blood and feeling like I have the flu I am so fatigued, my dr thinks the same and I have some big boy antibiotics to try and kick this bout of pouchitis in the ass.

Yet it is world IBD day which means though I’d rather be in a duvet den I am actually on the bus into Sheffield ready to go on BBC radio to talk about IBD!

Because though I am a BIG fan of listening to your body and stopping when you need to, today is just too important to me to cancel. I do everything I can to keep raising awareness, to #stoppoobeingtaboo and to help as many people as I can. And I do it all whilst fighting my own battles.

I know today I can reach a large audience of people with IBD, as well as carers, family and friends of those with Crohns or Colitis. And so I will carry on regardless because it means EVERYTHING to me to make a difference.

This shitty disease that keeps knocking me down every time I am feeling better. It has to be for a purpose. I have to believe that my life isn’t a struggle for no reason, and I choose to believe that reason is for this Sheffield lass with a big gob to help others.

And so Ill keep going today, through running to the loo and grinding aching joints and I will make a difference.

(Let’s not even DISCUSS my day trip to London tomorrow for business meetings!!!!)

Luckily I am going on holiday at the end of this week with my lovely Timm and the kids to see my fab in laws in Lanzarote. Not great timing as I’m worried about ruining the trip but at least I have some down time and can relax and rest.

Love Sam x

World IBD Day – 19th May 2015

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.

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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!

crohns and colitis awareness week

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

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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

 

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

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.

drip drugs j pouch ibd surgery sheffield so bad ass sam cleasby

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.

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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.

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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?

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.

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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.

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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.

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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!

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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

What a week!!

So, this week has been crazy!! After my post of the letter to the woman who tutted at me for using the disabled toilets went viral, the website has had over 2 million views and I have been in newspapers, websites, radio stations around the world and even had an appearance on BBC breakfast.

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I have been on BBC Sheffield, BBC WM, BBC 5 live, Spin 1038, Rother FM and Hallam FM.

I made it over to Australia and appeared on both The Telegraph and News.com as well as countless smaller news outlets.

Lots of Danish and Swedish websites ran the story too. Plus too many sites than I can mention have shared, reblogged and discussed the story as well as the Metro and Huffington Post.

I have been in the Sheffield Star, daily Mail and the Mirror.

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But please don’t think I’m bragging. I am just so pleased that my story, my little blog, my baby has made it into the lives of so many people.

From the start, what I wanted was to make a difference. To help those with Crohns and Colitis to not feel alone, to know there are others who feel the same, suffer in a similar way and that there are a community of people who care and want to make their lives better.

To know I’m part of that, that I’ve made people feel a little better is amazing. I am so proud.

Now, pride is a sin, (I remember this from my Catholic youth!) but I don’t care! I am proud that I have turned the worst two years of my life into something amazingly positive, something that has made a difference to people around the world!

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I have received messages from thousands of people telling me their stories. I am honoured that all these people feel they can share the personal details of their illnesses and feelings. I am reading every single comment and email and trying to reply to as many as I can.

I’m in shock to be honest, the past week has sent me from a blogger sat talking about poo in her office to the couch of the UK’s top breakfast show! I am a little overwhelmed by the attention but so blessed that this has happened.

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I just want to thank every one of you. Every single read, like and share is making a difference to millions of people. This issue is bigger than the IBD audience that I had originally planned it for. Messages from people with all manner of invisible disabilities have touch and I have learnt a LOT.

Moving forward from this viral publicity, I am more motivated than ever to make a difference. I am in talks with three different charities about how I can help to better the lives of my peers and I am so excited.

I know I come across as this confident, outspoken person who is fearless… Inside I am a 33 year old mum, I am a wife, sister, daughter, friend. I was a teenage mum and constantly worry and question myself. I have a chronic illness that will never leave me and I’m always exhausted. I worry people will judge me on my lack of further education and think I’m stupid. I’m a size 16 woman living in a world where women are judged my their size not their character.

But I’m also a writer.

I want to make a difference.

I want to change the world.

And so this past week has taken me, and all my flaws and weaknesses, and taken me one step closer to my goals.

Thank you so much. You’ll never know how much I appreciate every read, every like, every share, every comment.

You lot are awesome.

Thank you

✌️& ❤️

Sam xx

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