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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!

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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

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.

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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.

ibd funny poo jokes lol

 

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.

sam cleasby mum parent blogger

 

 

Sam x

 

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.

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.

crohns and colitis uk Ileostomy Support

 

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

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

ibd and junk food get your belly out

The truth

 

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Here is the response from Crohns and Colitis UK

 

“Junk Food and Crohn’s disease” – Our response:

Crohn’s and Colitis UK welcomes the discussion that today’s BBC coverage has created as it generates greater awareness of these often invisible inflammatory bowel diseases (IBD).

However, the reference to Junk Food being a possible cause of Crohn’s disease is a controversial subject and potentially unhelpful as many patients eating healthy diets have strongly disagreed with the junk food comment.

At this point there has been no definitive scientific link made to any particular diets or food additives as being a sole cause of the disease. There are many possible reasons why a patient may develop Crohn’s or Ulcerative colitis, including genetic and various environmental factors, and each patient’s case is individual.

The reason for the increased numbers of hospital admissions over the last ten years may reflect the increasing numbers of patients, often young people, being diagnosed with IBD. An estimated 10,000 young people are diagnosed with both Crohn’s and Ulcerative Colitis every year.

The increased admissions figure may also reflect the fact that hospitals are improving their data information capture systems. We need more studies and information to offer a more definitive answer.

 

A to Z of IBD

When I talk about IBD Im often faced with blank stares and so here is my A-Z guide to Inflammatory Bowel Disease… Please remember that I am not a trained medical person and these are my opinions only.  Always speak to your GP, doctor or nurse about any worries or concerns you have. xx

A is for Ass – IBD covers both Ulcerative Colitis and Crohns and is a disease of the digestive system, Ulcerative Colitis is a disease of the large intestine whilst Crohns affects anywhere from the mouth to the anus.  They cause diarrhoea and bleeding and so sufferers have to deal a lot with their ass (or arse if you’re from the UK) – My site name came from my nearest and dearest regularly asking me ‘how’s the ass?’ and my reply being ‘I’m so bad ass right now’

bad ass

B is for Bowels – Your bowels or intestine go from your stomach to the anus and consist of the small and large intestine, the small intestine begins at the duodenum, which receives food from the stomach, the duodenum transmits food to the ileum.  The large intestine consists of the colon and rectum.  The colon connects to the rectum, and finally the anus.  IBD can affect all the parts of the bowel and causes pain, cramps, bloody diarrhoea.

stomach intestine anus diagram

C is for Colectomy – A colectomy is the name of the surgery that I had in 2013 and consists of the surgical resection of any part of the large intestine.  I had a sub total colectomy which means they removed all of my colon apart from the rectum.

C is also for Colostomy – Most people have heard of a colostomy, which is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the abdomen and suturing it into place.  This allows waste to leave the body and be collected in a bag.

ulcerative colitis quotes

D is for Diarrhoea – not the nicest thing to talk about but one of the biggest symptoms of IBD.  Imagine that time you got horrific food poisoning or the worst stomach bug ever, you know that one time when you couldn’t control your bowels and it felt like an alien was about to burst forth from your stomach… Remember that? Yeah, thats what IBD diarrhoea is like.

E is for Endoscopy – Endoscopy plays a key role in the diagnosis, management, and surveillance of IBD. Because there is no single test that can diagnose IBD, endoscopy is useful in establishing the diagnosis, distinguishing Crohn’s disease from ulcerative colitis, defining the extent of the inflammation. In established IBD, endoscopy helps define the extent and severity of the disease which aids medical and surgical decisions.

Colonoscopies and sigmoidoscopies are commonplace, they are undignified, embarrassing and uncomfortable but as someone who has had so many of these procedures I can tell you that they’re not as bad as you may fear.  Sedation is offered and in my opinion should always be taken!  I also remind myself that the nurses and doctors do this everyday and there is nothing they haven’t seen before.

F is for Flare Up – people with IBD are not always sick constantly, they have periods of remission and illness.  These periods of being unwell are referred to as a Flare Up.  Flare ups can vary in strength and length of time and can’t be predicted.

ileostomy bag bikini swimwear beachwear holiday

G is for Gastroenterology – Gastroenterology is the specialty of diagnosing and treating diseases of the gastrointestinal tract and so these are the fellas who deal with us IBDers.  If you have IBD you will get to know your doctors and nurses very quickly.  If you do not feel that you are getting the right treatment, don’t be afraid to speak up.  I was under one team for years before I decided to change to another local hospital and a new team.  It was easy to do, all through my GP and I am so much happier with my treatment since then.

H is for Hospital – IBD is managed by a consultant and team of doctors meaning that sufferers spend a good chunk of their time attending hospital appointments.  Severe flare ups can require hospitalisation for more aggressive treatments and medication.  If the disease gets to the point of requiring surgery then hospital unfortunately can feel like your second home.

sam cleasby ulcerative colitis ibd ileostomy surgery

I is for IBS – IBD is not the same as IBS.  Not at all.  And it kinda pisses off IBD folk when people say “ohhh yeah my sister/brother/uncle/neighbour has IBS!!”

Irritable bowel syndrome (IBS) is classified as a functional gastrointestinal disorder, which means there is some type of disturbance in bowel function. It is not a disease, but rather a syndrome.  IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn’t result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives.  This information is from the CCFA.

Im not belittling IBS, I know it causes great distress to those who suffer from it but it is very different to IBD and the two shouldn’t be confused.

I is also for Ileostomy – An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine out onto the surface of the skin. Intestinal waste (shit) passes out of the ileostomy and is collected in an external bag that sticks to the skin.

woman with stoma ileostomy ostomy stoma images

J is for J Pouch – A J Pouch or Ileoanal Reservoir is a surgical treatment option for IBD patients who need to have their large intestine removed. It is an internal pouch formed of small intestine. This pouch provides a storage place for stool in the absence of the large intestine. Several times a day, stool is passed through the anus.  This is the next step for me and will mean I no longer have a stoma or ileostomy.

K is for Keep Calm and Carry On – because in reality, it is the only thing we can do.

keep calm and carry on

L is for Laughter – Now I know that this disease is serious business, it affects every part of your life and the pain and embarrassment can just feel too much so having L for Laughter may seem like an odd one.  But I really believe that laughter is the key to getting through the bad times.  The fact is that poo, bums and farting are a bit embarrassing for most of us, but they are also funny.  Seriously, toilet humour is hilarious and the quicker you can laugh and make a joke of something, the quicker it feels like less of a big deal.

M is for Medication – there are a variety of medications used to treat IBD, my experience has only been of Ulcerative Colitis meds but most have side effects and some people find the treatment as unbearable as the disease itself.   I believe that its really important to educate yourself on the medications and treatments available to you along with the benefits and side effects.  Take control of your disease and make sure the treatment path is the right one for you.

If your symptoms are mild you may not require specific treatment as mild ulcerative colitis often clears up within a few days.

Moderate ulcerative colitis is often treated using a medication called aminosalicylates. If this is not effective, alternatives such as corticosteroids (steroid medication) and immunosuppressants (medications that suppress the workings of your immune system) can be used.

Once your symptoms are under control it may be recommended you continue to take aminosalicylates as these can help prevent further flare-ups; this is known as maintenance therapy.

If you experience a severe flare-up you may need to be admitted to hospital where you can be given injections of corticosteroids or immunosuppressants.

There is also a relatively new type of medication called infliximab that can be used to treat severe ulcerative colitis where corticosteroids cannot be used for medical reasons.

This information comes from the NHS website.

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N is for the NHS – Only since my surgery have I realised just how lucky we are in the UK to have the NHS.  Though I had some difficulties (I changed hospitals and consultant once and had a bad nurse experience) I am a big fan of the NHS and feel so lucky to have had the level of care, treatment and support that I have received.  When I read about IBD patients in the US I am appalled at how their system works and realise the value of our countries medical care.

I can’t thank my doctors and nurses enough for the amazing care Ive had in the last year, they have truly saved my life and Im eternally grateful.

O is for Ostomy – The terms ostomy and stoma are general descriptive terms that are often used interchangeably though they have different meanings. An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.

end ileostomy ulcerative colitis

P is for Pain – Pain is a common side effect of IBD, abdominal cramps and pain as well as a literal pain in your ass.  Living with pain is really difficult and has such a negative impact on the lives of those with IBD.  It can become difficult to manage as sufferers should not take anti inflammatory drugs or Nonsteroidal anti-inflammatory drugs, usually abbreviated to NSAIDs.  Other pain relief can also have an affect on the bowels and some are really addictive and should only be used short term.

P is also for Poo – in a post like this, how could it not be??

bristol stool chart cake

Q is for Quality of Life – This is a biggy for me, one of the main reasons that I wanted to go ahead with my colectomy surgery was because Ulcerative Colitis was really affecting my quality of life.  That is an understatement to be honest, my life with IBD was literally shit, it made me miserable.  I was exhausted both physically and mentally, I struggled to work, I dislike going places where I wasn’t near a toilet, my body was being wrecked by meds, I had little sex life, I was moody, angry with life and just felt hard done to.

I was pissed off that I had to live like that, it seemed so unfair.  Since my operation my quality of life has gone through the roof, though it is in no way an easy option it was definitely the right option for me.

R is for Rectum – Let me tell you about Phantom Rectums… Phantom rectum is a complication that can affect people with ileostomies. The condition is similar to a “phantom limb”, where people who have had a limb amputated feel that it is still there.  People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

Weird, annoying but hilarious to tell people about!

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S is for Support – Support is key to surviving IBD, from medical teams, friends, family and IBD groups.  It really is a shit disease to have to live with, and due to its taboo nature sufferers not only have to deal with the physical problems but also with the huge emotional toll it takes on your life.  Embarrassment, shame, humiliation, anger and a deep sadness are all emotions that Im at war with every day and it is only with the support of my husband, family and friends that I get though it.  My blog is a coping mechanism for me, if I can write it down and feel that Im helping someone else then it feels that the crap I deal with has a purpose.

Im also a member of the IA Support (Ileostomy and Internal pouch support) and I visit the Colitis and Crohns site regularly.   Whoever you choose to talk to, just talk to someone.  I guarantee you that it helps, I get many emails and messages through this site and always try to reply to and support anyone that I can. xxx

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

T is for Toilets – IBD sufferers are well acquainted with not only their own toilet but those of all friends, family and all public toilets in their surrounding area.  I can’t even imagine how much time I have spent on the pot in the last ten years, considering that during flare ups I could be going to the loo 20 + times a day.

As a side note, you can request from Radar a key to use disabled toilets around the UK as when you need to go, you need to GO… Having washing facilities by you is a life saver when you have IBD.  So next time you see someone who doesn’t look ‘disabled enough’ using the facilities, wind your neck in..

U is for Ulcerative Colitis – I was diagnosed with Ulcerative Colitis in 2003, it was a life changing moment and I struggled to deal with the idea of having an illness for a while.  UC is inflammation and ulceration of the large intestine or colon, it presents itself with bleeding, diarrhoea and pain.

ibd warrior inner strength confidence ostomy ileostomy bag

V is for Vegan, or Vegetarian or the raw diet, or the beige diet – There are a million and one people across the internet who claim to have the ‘cure’ for IBD through diet and pills.  The fact is that if you are suffering from IBD you should NEVER start any massive change to your diet without speaking to a doctor first.  Doctors do recommend a low residue diet during flare ups but please talk to an expert before trying to heal yourself with foods, drinks or any herbal remedies.

W is for Weight – IBD can really negatively affect weight, for many the disease stops the body absorbing nourishment which means drastic weight loss and those people really struggle to keep themselves at a healthy weight.  For others the meds and illness cause weight gain, puffiness and bloatedness.  Neither is healthy and neither make the person feel good.

X is for X ray –  Or Xylophone.  But I can’t think of a way to connect IBD to a xylophone so we will talk X rays.  X-rays form a  series of tests that may be done on people with IBD.  Sometimes using barium and at other times without, X-rays are used less these days as clearer tests are more commonplace.  I have had a couple of X-rays before to check for toxic mega colon, which is not a Muse song but an acute form of colonic distension where the colon becomes extremely swollen and massively enlarged.

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Y is for You – How IBD affects you comes down to how you choose to deal with it, it is bloody hard work to be ill and it can be depressing and make you angry, sad and broken.  But your courage and bravery of just getting through each day is something to be proud of, remember that.

Z is for Zzzzzz – Or sleep (give me a break, Z is hard!!!)  IBD can not only affect the amount of sleep you’re able to get but the quality of sleep as well.  Whether it is through medication, pain or getting up through the night with diarrhoea and bleeding, lack of sleep can cause all sorts of problems such as

  • Difficultly getting to sleep
  • Difficulty staying asleep
  • Problems with concentration
  • Headaches
  • Poor attention
  • Changes in mood
  • Fatigue throughout the day

Side effects from many medications that are given to an IBD patient can also cause sleep problems.  Steroids such as Prednisone can keep a person up all night.

Love Sam xx

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