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Ulcerative Colitis patients needed for study…

This is from Denise, who is looking for 200 Ulcerative Colitis patients to participate in a 30 minute on-line project from 14th July – 15th August.

 

• All patients must be aged 18+
• All patients must be diagnosed with UC and have had surgery for it
• All patients must NOT be diagnosed with any of the following conditions:- Any diagnosed Cancer for which you are currently being treated for; Stroke; Multiple Sclerosis (MS); Chronic obstructive pulmonary disease (COPD); Chronic kidney disease; Diabetes (Including Type 1 and Type 11)
• £25 per participating respondent

This particular study is to learn about people’s health quality of life following surgery which they have undergone due to their Ulcerative Colitis.

If you want to get involved you can contact Denise Salinger as follows…

020 8905 3016
07956 248 777

 

 

Love Sam x

 

So Bad Ass – what I do and why

I have had Ulcerative Colitis for over ten years now, and when my health took a real turn for the worse last year and I was facing surgery, I scoured the internet for support and help.  There were a lot of medical websites with confusing terminology and terrifying pictures and there were forums dedicated to IBD patients, but I found these difficult to interact with and like they had no relevance to my life.

I found one amazing blog called Inflamed and Untamed run by the ever inspiring Sara Ringer, her blog was the thing that inspired me to start So Bad Ass.  She was young and happy to talk honesty about her health, I fell in love with her blog and still follow her now.  But as she is based in the US I found some of what she spoke about just not right for the UK.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Over a year later I am so proud of what I have achieved here.  I get thousands and thousands of people a week reading my little blog and so many emails and messages both of support and asking for my help or telling me that this site makes a difference.

I have spoken at International Women’s Day and been booked to do talks at Women’s Institute events and hospital charity events.  I have written for charities, blogs and magazines.  I am devoting myself to raising awareness off Inflammatory Bowel Disease, Ulcerative Colitis, Crohns, ileostomies, colostomies and j pouches! But more than that, I want to use my experiences to help women deal with issues around self esteem, body confidence and learning to be so bad ass and awesome.

Over the past couple of weeks there have been so much media attention given to ileostomies and it is amazing!!! It is the reason that I journaled my experience and have shown my photographs for the last year.  I think the more we see ileostomy and colostomy bags, the less taboo, the less scary and the less shocking they become.

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

Im so proud of my IBD brothers and sisters for sharing the stories and photographs and getting IBD into mainstream media.  I did a story last year about how frustrating I was finding it to be hitting a brick wall when contacting (A LOT) of newspapers, magazines and media outlets and being turned away.  So to finally see stories and images hitting the headlines I am over the moon.

I just wanted to thank all my readers for staying with me on this journey, for reading, liking, sharing and tweeting.  I can’t tell you how much it means to know that I have amazing audience who support this blog and share it all over the world.

 

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It may take more time, but slowly and surely the message is getting out there.  I hope this blog and all the other blogs that are appearing now continue to raise awareness, spread a positive message and make a difference to the 260,000 people in the UK living with these diseases.

Hooray for us!!!

 

 

Love Sam xxx

 

I <3 MY STOMA

After a year of blogging here at So Bad Ass I am OVER THE MOON to see so much about IBD, Crohns, Colitis and living with an ostomy in the media.  It is a really exciting time and Im so pleased to see stories and pictures in the news and going viral.  As you may know my aim is to #stoppoobeingtaboo and so it is fantastic to see the disease and treatments being talked about.

Im loving the bikini shots doing the rounds, I have been open and shared my photos for the last year as I think it is so important to demystify and show the reality of having an ileostomy or colostomy bag and so I think the other people sharing their pictures are just brilliant.

 

 

ileostomy bag and fashion swimwear

 

 

I am now 7 weeks post pouch surgery and so I am learning to live without my ileostomy after 9 months with my stoma and bag but it got me thinking about how that bag changed my life so massively.  After ten years of ulcerative colitis and endless hospital stays, medication and different treatments I had surgery to remove my large intestine and an ileostomy formed.

For the first time in so long I suddenly felt like I had some control back in my life.  Don’t get me wrong, it was major surgery and the recovery was tough but I was no longer going to the toilet 20-30 times a day, I wasn’t bleeding or in pain and it changed my life in such a positive way.

It was a big decision and a terrifying one, but it was the right thing for me and I honestly did love my stoma.  It was a funny little thing, I had no control over it and it bubbled and trumped whenever it felt like it.  I named it Barack Ostoma (no real reason, I just love a pun and it made me laugh!) and it allowed me to go traveling to Vietnam and Australia just three months after surgery, something I couldn’t imagine trying to plan whilst being ill with Ulcerative Colitis!

And so today I just want to celebrate my stoma and ask you to share my post, let’s show the world what is under the bag.  It isn’t terrifying or ugly, it isn’t dirty or something to be ashamed of, it is a surgical alteration to the body which changes lives and helps people live again.

I <3 my stoma.

What do you think of it?

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Love Sam xxxx

IBD and junk food – a big rant!

I had another post planned today but I am so incensed by the news report I have head today that I had to write this.  The report said that IBD is caused by junk food and is on BBC’s newsbeat, you can read it here.

“Dr Sally Mitton says she and her colleagues at St George’s Hospital in Tooting, south-west London, have seen a rise in the number of young people with Crohn’s.  “We know that there are many genes that predispose someone to get Crohn’s disease.  But we also know that lifestyle factors like eating a lot of junk food or taking many courses of antibiotics may make it more likely to happen.”

 

junk food and ibd

This quote has led to news reports leading with ‘news’ that junk food causes Inflammatory Bowel Disease.

I am seething, the NHS say:

The exact cause of ulcerative colitis is unknown, although it is thought to be the result of a problem with the immune system.

Autoimmune condition

The immune system is the body’s defence against infection. Many experts believe that ulcerative colitis is an autoimmune condition (when the immune system mistakenly attacks healthy tissue).

The immune system normally fights off infections by releasing white blood cells into the blood to destroy the cause of the infection. This results in inflammation (swelling and redness) of body tissue in the infected area.

In ulcerative colitis, a leading theory is that the immune system mistakes “friendly bacteria” in the colon – which aid digestion – as a harmful infection, leading to the colon and rectum becoming inflamed.

Alternatively, some researchers believe a viral or bacterial infection triggers the immune system, but for some reason it doesn’t “turn off” once the infection has passed and continues to cause inflammation.

It has also been suggested that no infection is involved, and the immune system may just malfunction by itself.

Genetics

It also seems inherited genes are a factor in the development of ulcerative colitis. Studies have found that more than one in four people with ulcerative colitis has a family history of the condition.

Levels of ulcerative colitis are also a lot higher in certain ethnic groups, further suggesting that genetics are a factor.

Researchers have identified several genes that seem to make people more likely to develop ulcerative colitis, and it is believed that many of these genes play a role in the immune system.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Environmental factors

Where and how you live also seems to affect your chances of developing ulcerative colitis, suggesting that environmental factors are important.

For example, the condition is more common in urban areas of northern parts of Western Europe and America.

Various environmental factors that may be linked to ulcerative colitis have been studied, including air pollution and certain diets, but no factors have so far been identified.

 

I have had Ulcerative Colitis for ten years and so this blog revolves around my experiences, I know a lot more about Ulcerative Colitis than I do Crohns Disease but the plight of anyone with IBD is so important.  Apologies to any Crohnies who feel I am biased towards UC, I just don’t know as much and have no personal experience of Crohns.  I hope you read this knowing that I support Crohns and Colitis awareness and only talk about UC more as it is what I know.

Leading a report by putting the blame on patients is unfair, damaging and really upsetting to the hundreds of thousands of people with IBD in the UK.  Diet “may” be linked to IBD in some way, but as the NHS website says so could air pollution! Yet we don’t see reports blaming the environment.

Putting the blame on the patient leads to a public shaming of patients, it is bad enough to have to deal with a disease that causes pain, bleeding, diarrhoea, fatigue.  Having to take multiple drugs that each have their own set of side effects, facing many surgeries and possible death! But to then make the patient feel that it is their fault is heart breaking.

The report also says “there is no cure but many patients learn to manage the symptoms, often by altering their diet.” – I would argue this point too.  Patients HAVE to learn to manage their LIFELONG INCURABLE disease through medication.  A flare up CANNOT be controlled by diet alone.  During a flare I have always been advised to eat a low fibre/low residue diet.  A low residue diet involves avoiding roughage (insoluble fibre) that your body struggles to break down. Roughage is found in skins, pips, seeds, whole grain cereals, nuts and raw fruit and vegetables.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

This makes it very difficult to have a normal healthy diet as you have to avoid a lot of fruit and veg and are encouraged to eat only white bread/pasta/rice.

Perhaps the rise in the number of patients could be to do with patients with IBD being a lot more open about the illness, blogs like mine and many other fantastic IBD blogs are demystifying the disease and perhaps this is making it less taboo so people having symptoms are more likely to go to the doctor?

There are many unknowns about IBD and I welcome any debate and discussion but blaming the victim by putting this onto junk food is unhelpful and damaging to all the people who are currently working so hard to raise awareness and provide support.

 

Love Sam x

 

*UPDATE* I got this response from @BBCnewsbeat on twitter…

newsbeat twitter junk food ibd

newsbeat twitter junk food ibd

newsbeat twitter junk food ibd

newsbeat twitter junk food ibd

 

 

 

 

 

 

Ulcerative Colitis and Stoma poetry

 

There was a pain inside me, it couldn’t be cured or healed

It ate away at the person I was, taking my time and my energy

It pulled me into the smallest room in the house and held me prisoner

The pills to fix were a poison, they give with one hand but take with the other

When even the soldiers no longer fight for you

The time comes, they will take the pain away

Remove the offending item, halt the bleeding, stop the war

My life changed at the hands of another

Suddenly there is light, there is a glimmer of joy

a feeling warms slowly, a hesitant smile plays on my lips

the battle is over, though there is still work that needs to be done

the person I thought had gone, was only hiding

She returns.

 

Sam Cleasby

Ulcerative Colitis – a gift?

Anyone who has seen or heard me writhing in agony, weeping with embarrassment or slumping in an exhausted heap may read this post with a wry smile on their face, but I wanted to write about how despite all its tough times, Ulcerative Colitis has also been a gift.

When I was first diagnosed with Ulcerative Colitis back in 2003 I went through a whole grieving process; Denial, Anger, Bargaining, Depression and finally Acceptance.  Once you have accepted the disease and the path it will lead you down, you realise that without it, you wouldn’t be the person you are today.  You realise that this disease has changed you, and on the whole, it has changed you for the better, you may be physically weaker, but the strength you have to find to deal with a chronic illness makes you a fuller, kinder and more open person.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

Now don’t get me wrong, I am not trying to romanticise Ulcerative Colitis or Crohns, it is a heavy cross to bear, there have been many times that I have cried till I had no tears left, that I took my anger out on those around me and that I shouted the immortal words of “WHY ME?! ITS NOT FAIR!!!!!”

But along with the hard times, the medication, the pain, the hospitalisation, the surgeries and the emotional war that rages within you during a flare up, having Ulcerative Colitis has also given me so much.  It has shown me that I am braver than I think I am, tough as an ox and that I have it in me to inspire others.

When I was a mother of three by the time I was 23 with no qualifications and then given what at the time felt like a life sentence of blood and shit, I never thought I would be at a point where my words were being read by thousands, that I would receive messages of support and cries for help from all over the world.  I never believed I would be asked to speak at International Women’s Day, little old me? Im just a girl from Sheffield who doesn’t know what she wants to be when she grows up!

ibd warrior inner strength confidence ostomy ileostomy bag

Ulcerative Colitis has lead me down a path of meeting people like me, who deal with this disease every day, who I can talk about the things that would turn most peoples stomachs and just make us laugh.

It has shown me that I am surrounded by the love and support of my family and friends.  When I was in hospital for surgery last year and in the months since, I have been completely overwhelmed by the compassion, kindness, humour, love and help of those around me.

It has made sure Im damn straight on the fact that life is precious.  You never know what you will face and my Ulcerative Colitis reminds me that you are here once and not for very long.  Live hard, live with love and follow your dreams.  Don’t waste time on the shit that means nothing, concentrate on what you want and how you can get there.  Hold your loved ones close and enjoy life.

It has made me take stock of what is important to me.  My husband, my children, my family, my friends, my self esteem, my morals.  It made me look at where I wanted to be and made me make it happen.  My husband and I sold up and moved to a big rented mill in the countryside to expand our photography business, The Picture Foundry, it was scary (still is!!) and hard work but making the move has improved our lives and brought us closer together, our business is thriving and moving forward all the time.  Ulcerative Colitis really moulded me into a person who is brave enough to make the changes I want in life.

It has stopped me being afraid.  Or at least made me work on my fears.  After having major surgery to have your bowel removed it makes you feel like you have faced the toughest times and so those things that frightened you before are no where NEAR as big or bad as the disease you live with.

It has taught me to respect and love my body.  Its the only one I have and despite its faults I need to look after it.  After all it has been through I think it is pretty amazing! Yes, it has a stoma and scars but I have learnt to embrace the changes and not be embarrassed of them.  Through weight gain from steroids, epic diarrhoea, being pumped full of drugs and being cut open, my body has stayed resilient and kept me going through it all.  I love my battered and scarred body.

sunbathing with an ileostomy stoma ostomy travel holidays bikini swimwear

Finally Ulcerative Colitis gave me the opportunity to slow down and release control.  When I am ill, when I had surgery, I needed to release the reins and allow myself to be weak, to be cared for and to let others in.  It made me realise that my husband is amazing, he cares for me in such a tender, honest and funny way.  He never judges, never wavers in his love or attraction for me and makes everything better.

Its good to be a strong person, to have self esteem and confidence, but now and then it is good to relax, to be cared for and treasured.  Im lucky to have such amazing people around me.

woman with stoma ileostomy ostomy stoma images

Im lucky to have had Ulcerative Colitis.

Sam x

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.

stoma ileostomy photo shoot woman beauty ibd surgery ostomy

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!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

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.

stoma ileostomy photo shoot woman beauty

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

2013 – what a year!

This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!

I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.

sam cleasby ulcerative colitis ibd ileostomy surgery

It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this.  But through the support of my friends and family I got through it.  I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it.  Over 30,000 views since I started!!!!

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As tough as this year has been, I have come through stronger and with a sense of what I want from life.  Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.

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I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up.  I wear my ileostomy bag with pride as it is a symbol of wellness for me.  Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future.  Now my bag lets me lead a better life.

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Im travelling at the moment, I am been to Vietnam and Im in Australia now.  This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all.  In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.

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2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.

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woman with stoma ileostomy ostomy stoma images

woman with stoma ileostomy ostomy stoma images

sunbathing with an ileostomy stoma ostomy travel holidays bikini swimwear

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So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

Life with Ulcerative Colitis

This is an article I was asked to write for Dexterous Diva as a guest post for her fantastic blog about living with a chronic illness, Jo who runs the site has endometriosis and the blog is really inspirational.  I was worried at first about writing about my experiences, concerned about how it would come across but once I started writing, it flowed pretty well.  I realised I was comfortable with writing about this disease because it was important to me.

It was written last year so obviously some parts regarding my personal progress with the disease are out of date, but still, enjoy!  It’s good for me to read it back and remember how awful my flare ups were and that now, even though living with an ileostomy bag has its difficulties, life is so much better than when I was ill.

If you would like to know more about my commercial writing and how to get me and all my awesome on your website, newspaper or magazine, then get in touch through my PR friendly page.

sam cleasby ulcerative colitis ibd ileostomy surgery

Ulcerative colitis is a chronic disease of the colon causing inflammation and ulceration of the lining due to an abnormal response by the body’s immune system. It’s an embarrassing illness that causes bleeding, diarrhoea and pain and massive tiredness.

I am 30 and have had this disease for 9 years now, I have been hospitalized several times and have to take daily medication. Ulcerative colitis comes and goes in waves, you can go weeks, months or even years between flare ups though I have been suffering with an ongoing flare for the last 2 years.

To look at me you would probably think I was a happy go lucky, slightly mad woman with flame red hair usually seen
guffawing my way through life. But inside I’m usually struggling. I’m usually feeling terrified I will lose control of my bowels, I’m sometimes uncomfortable with people coming too close in case I smell (I’m assured by my husband and friends that I don’t) Sometimes I’m smiling on the outside but inside I’m so fed up with dealing with this illness that I just wish I could hide away from life like a hermit in a cave (a cave with a flushable toilet!)

I spent my early twenties having kids, I have three children, now aged 11, 9 and 7. I was a stay at home mum and so dealing with my illness though difficult at times, was made easier by the fact that I was at home most of the time and could stay near a loo if I was having a flare up.

sam cleasby ulcerative colitis ibd ileostomy surgery

I then trained as a masseuse and a doula. I got a job as a breastfeeding support worker and loved it. I felt I had found my
calling in life. I loved being a support to women through their pregnancies, during labour, birth and in the first few months of their babies life. Then 6 months into my job I started with a bad flare up. I was bleeding very heavily and needing the toilet 20+ times a day. My job was to visit mums in their homes or at a children’s centre and the colitis was making this extremely difficult. I spoke to my manager who wasn’t particularly helpful and suggested I planned my days better. She didn’t understand that I couldn’t plan when I needed the toilet and that was the problem.

I was signed off work for four weeks and ended up in hospital again, during my stay and due to my shoddy immune system I caught flu and was bed ridden for weeks. It was at this time that I decided to hand in my notice. The stress of work and the thought of doing my job poorly and possibly letting people down was just too much.

I became very low and felt useless, worthless and broken.

Then my husband decided on a change in career, he had been an amateur photographer for years and decided he wanted to go full time. A year on and business was booming. Slowly, he started asking me to help him out and after a while I was taking on a larger role within the business and my self esteem was building up.

Now I run our blog, website and social media, I take care of marketing, editing and more. I’m learning to be a photographer and I’m loving life a little more.

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Working for myself in our family business means I can work when I am well and rest when I am not. It means I don’t have to deal with office toilets and colleagues not understanding. I honestly don’t see how I could hold down a job working for someone else. When my flares are bad and I can spend 3 – 4 hours a night on the toilet and then cant wake up in the morning. I can go to the toilet up to 30 times a day. I can be so exhausted that I cant keep my eyes open. My joints ache horrendously and I have to take strong painkillers that make me dozy and uncoordinated. Hardly an ideal candidate for a job eh? But you know what? I’m a hard worker, I’m fiercely loyal and a kind, caring person. I’m always learning, a good listener and I love my job.

I have been very honest here, perhaps more honest than I am with friends and family because it’s hard to talk about. Its hard to admit that at times I hate myself, that I’m jealous of “normal” people, that I despise my stupid, broken body that needs drugs just to behave semi normally. But I think it is so important to get my message out because other times I am really proud of myself that despite this illness I have three beautiful children, I co run a successful business, I have an amazing husband and some wonderful friends.

sam cleasby ulcerative colitis ibd ileostomy surgery

I want to take time to mention my husband because his support makes my life a million times easier. He is so understanding, he loves me unconditionally, even when sometimes I don’t feel like I can love myself. He looks after me when I am ill and cheers me on when I’m well. He comes to doctors appointments when I’m just not strong enough to deal with it alone. He is always there to love me and hug me whether times are good or bad.

In the beginning I kept a lot from him, I was embarrassed and worried that he would be put off me, stop fancying me or even not want to be with me any more. Then I let him in. I explained what I was feeling like, physically and emotionally. I told him about it all, even the most embarrassing parts. And I found out that the old saying ‘a problem shared is a problem halved’ is so when I was asked to write this blog post I was unsure. Part of me wants to hide the illness and low self esteem away. I worry what people will think of me, that in some way my illness may look bad on the business. But after 9 years of having ulcerative colitis I’m done with being ashamed, I have done nothing wrong and I have an illness. Yes, it’s an embarrassing illness but if we never talked about these things, how can we learn to understand them?

Love Sam xx