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Would you take part in a clinical trial? UK Ulcerative Colitis patients needed

Clinical trials are research studies that look into treatments for certain illnesses and gather information for future reference to further knowledge of those illnesses.

I am working with clinical research company, Quotient Clinical as they have a study for people with Ulcerative Colitis and are looking for participants.  The purpose of this study is to see how a study drug is taken up by the body, the drug is being developed for the treatment of pain and diarrhoea in Ulcerative Colitis patients.

People choose to take part in clinical trials for many reasons, it helps increase understanding of their condition and it may benefit others in the future.  As we know, there is no cure for Ulcerative Colitis and the current treatments can be very harsh on our bodies, I am a strong advocate for research and development of treatments and studies like this are a good way to seek out a better way to treat our symptoms and illness.

This study requires a few visits to their unit in Nottingham, firstly an initial screening appointment lasting 4 hours.  Then there is a 2 night residential stay in a unit, two further brief 30 minute visits for sampling and then a 30 minute final follow up visit.  That’s quite a lot of commitment, I know, but the group do pay £915 plus a travel allowance for your time and effort and you will have the knowledge that your participation will help future sufferers.

Studies like this aren’t for everyone, you need to think about your own personal circumstances, but for some people it will be a positive experience where they can potentially help future patients.

sam cleasby sheffield blogger disability

The NHS website give some advice on taking part in studies;

Advantages of being in a clinical trial

  • The main reason for carrying out trials is to assess whether one treatment is better than another
  • Trials are very important in helping find better treatments. By being involved in a trial, you’ll obtain information and evidence that may be helpful to you in the future, as well as helping the NHS provide people with the best possible standard of care

Disadvantages of being in a clinical trial

  • It’s possible you’ll experience unexpected side effect
  • You need to commit time to completing the study

Interested? Or know someone who might be?

The requirements are that you are aged over 18 years old, you must have been diagnosed with Ulcerative Colitis at least 4 months ago and have a BMI between 16 and 35.  You must not have taken part in a clinical trial within the past three month or donated blood in the three months before the start of trial.

There are various dates in September and October and dates are flexible

For more information, go to the Quotient Clinical website and fill in the application form or contact them on 0330 303 5000 or email moc.l1490785538acini1490785538lctne1490785538itouq1490785538@mahg1490785538nitto1490785538N1490785538

 

clinical study ulcerative colitis

 

Love Sam xx

 

Disclaimer: This is a sponsored post. From time to time, I work with companies and groups who pay me to showcase their products or events.  This helps me fund this website and keep it running.  I only work with companies whom I believe are of interest and beneficial to my lovely readers.

Is ulcerative colitis contagious? 

I was googling something earlier and typed in ‘is ulcerative colitis’ and these were google’s suggestions of what I may be searching.  I was truly shocked at the first one.  Is Ulcerative Colitis contagious?

It saddened me to think that this is what people are thinking about people with IBD, that they are concerned that they could catch this from us.  It shows to me that although awareness is improving massively, that there is still a lot of work to do.

 

For the record, Ulcerative Colitis and Crohns Disease are NOT CONTAGIOUS, you can’t catch this from being near to someone who has these diseases.

“Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed and produce pus.

The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon. If UC only affects the rectum, it is called proctitis, while if it affects the whole colon it may be called total colitis or pancolitis.

It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Crohn’s Disease.

Ulcerative Colitis is a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).” – Crohns and Colitis UK

 

There is still a huge taboo around bowel disorders, people are embarrassed to talk about any disease or symptoms that are about poo.  This is something I fight against all the time and what formed my hashtag #StopPooBeingTaboo.

Yes, it can be embarrassing but I always think that poo is the great leveller, it is something that every single person on the planet does in one way or another.  I do it in a bag, but that shouldn’t be a reason for me to be ashamed.

Your poo is a wonderful indicator of health and should be something that you notice.  Changes in bowel habits, losing blood or mucus, loss of continence or drastic change in your poo can show that you have health issues.  Seeing blood and having diarrhoea can be a sign of cancer, but it can also be all manner of health problems from the very minor to something more worrying.  If you’ve had any of these things for a few weeks, you should absolutely see your GP.  A lot of us ignore these signs because of embarrassment, but your doctor has seen more butts than you can imagine and will not be freaked out, I promise you!

bristol stool chart

 

The other suggestions from google were asking if UC is curable and deadly.  The answers are no and sometimes.  There is still no known cure, some people say that if you have the colon removed then you no longer can have Ulcerative Colitis and it is therefore a cure.  I don’t subscribe to this thinking at all as UC is an auto-immune disease and it has effects on the rest of the body too, from issues with the skin and eyes to fatigue.  I no longer have a colon, but I still class myself as having UC.

Is it deadly? Well, deadly is an emotive and strong word.  Do people die from problems occurring from UC or from issues with surgery, yes, absolutely.  I would probably word it as life threatening, it isn’t common, but there are risks to your life from medication, surgeries and symptoms.

It got me thinking about what other questions people may have about Ulcerative Colitis, ostomies or life with IBD.  I am always happy to answer any questions, though obviously I am not a doctor and can only give you my opinion.  If you are concerned about your own health, please do seek medical advice.

 

Sam xxx

Things I’d like you to know from a sick person

1. I don’t need your sympathy but I do need your understanding.

2. Don’t be embarrassed. If you have a question, just ask!

3. It’s not you, it’s me. Please be patient when I can’t make events/cancel last minute/don’t return your calls.

4. Needing help and support is not easy to ask for, but know I appreciate every offer.

5. Don’t be afraid. Sometimes my treatment is scary and unknown to you. It’s ok to not know what I’m going through.

ibd hospital jpouch canula medications

6. Don’t be a stranger! Visits, texts, phone calls are all welcome.

7. Your children’s questions and comments are great. Don’t shush them when they point and ask, kids don’t bullshit.

8. Sometimes I don’t want to talk about it. Don’t be offended if I answer quickly and then change the subject.

9. Sometimes I do want to talk about it. Sorry if I bore your ear off with a rant. I don’t need answers, I just need to vent.

10. Sometimes it takes the strength and stamina of a mountain climber to just do the things that come normally to you.

ulcerative colitis disability sam cleasby IBD blogger

11. Hospitals hate flowers. But I don’t! If you want to send me them, wait till I’m home.  Then I’ll cherish them.

12. I appreciate that being my friend/partner/colleague is sometimes a bit tough. Thank you for being part of my life.

13. Sometimes I feel really sorry for myself and my head is in a whirl. Sorry for the times I hide away.

14. When you send me links to things about my illness, it means a lot to know you’re trying to understand and help.

15. It’s not all about me! Please don’t worry that your struggles aren’t “as bad” as mine. I want to know what you’re going through and help when I can.

sam cleasby sheffield blogger

16. Sometimes my meds make me fat/thin/sleepy/manic/sad/weird/angry. Don’t worry.

17. I have good days and bad. Often my good days lead to bad days because I push myself too hard so I get to do nice things.

18. I’m sometimes a bad friend because I lock myself away and I’m not there for you. I’m sorry.

19. My husband and kids are going through this too. Don’t forget them. (Timm always accepts trips to the pub)

sam cleasby ibd and children

20. This is a lifelong thing with no cure. If you can’t take the heat, get the fuck out of my kitchen.

 

Sam xx

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

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.

ulcerative-colitis digestive system crohns ibd

 

 

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!

junk food and ibd

 

 

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

 

Going Dark

I’m not feeling too great at the minute.  Still.  My joints hurt so much, my wrists, hands, ankles, shoulders, hips… the pain is like a gnawing ache, and it moves around, floats from place to place in my body.  Isn’t that odd?

The tiredness is terrible.  I can’t wake in the mornings and then fall asleep all day, it’s the fatigue that is so hard to deal with.  The exhaustion makes me feel useless and like a sick person, it sucks out all energy, not just physically but mentally and emotionally.

I saw my GP this week and had some blood tests.  He suggested it could be a flare up of Ulcerative Colitis.  Isn’t that a joke! I thought removing my colon got rid of this bullshit but it turns out it’s all these ‘extra intestinal manifestations’ (I know this sounds like a ghostly poo but it means when the disease affects other parts of the body).

My eyes are so dry that I can’t open them in the mornings and they itch all day, my mouth is constantly dry no matter how much I drink.  My skin is dry, my legs are white with the skin coming away.

I’m going back next week for the results, if my inflammation markers are up then I potentially will have to have a course of steroids and go back under the gastro team at the hospital.  He also tested for Rheumatoid Arthritis to see if that is what is hurting my joints and so I just need to wait and see what he says on Wednesday.

Im not a great person to be around right now.  I don’t want to talk to people, I don’t want to go out.  I make myself do the things I have to do, but really want to just be hiding in the duvet cocoon.  The problem is because I talk so much normally (read: I’m a gobby cow), that when I feel hurt and sad, I go quiet and this worries those closest to me.  There’s a phrase on that TV series 24 when an agent turns off communications usually for their own safety or for the safety of those around them, it’s called ‘going dark’.

Going Dark: When an individual disappears or suddenly become unavailable or out of reach for an undefined period of time, generally for security reasons.

This describes me right now.  The only place I can deal with sharing at the moment is on my blog.  I know this can seem difficult for my husband and friends but it is all I have at the minute.

I feel so sad.  I thought all these surgeries would make me feel better (and I have to keep reminding myself that I AM better than I was) but it is hard to still be a sick person.  It’s silly because I always knew there was no cure for Ulcerative Colitis and that it is a life long chronic illness, an auto-immune disease that means my body is fighting itself.  But after everything I have been through, I just want a break.  I don’t want to be fucking ill anymore. I bloody hate being a poorly person.  I despise the burden I become to those around me.  I can’t stand that my lovely boy, the best person in my life, my husband Timm has to, yet again, bear the weight of my illness.

I’m sorry this post is so miserable.  I sometimes feel that I made a rod for my own back in being so god damned positive all the time!!! I feel I am letting people down when I feel sad.  But in a way, it helps.  I’m reading back all that advise that I give to others and remembering that I need to take it myself.

And so with that, I am going to try and treat myself a little better, sit in the sun, paint my nails, read a book.  Do the tiny things that I can manage that will ease my mind and warm my soul.

Thanks for reading

 

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

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.

sam cleasby ibd blogger

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.

ibd blog crohns and colitis uk

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.

sam cleasby ibd blogger

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!

crohns and colitis awareness week

 

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

Dear Ulcerative Colitis

Dear Ulcerative Colitis,

Well, what a journey we have been on!  Eleven years ago, you crept into my life with bleeding, diarrhoea and pain.  You were not a very welcome guest and so I ignored you.  You sat there in my guts getting angrier and angrier, your furious rage spurred you to make me so anaemic that I collapsed.  As I was taken into hospital in an ambulance with blue lights flashing, you were giggling to yourself, knowing that soon I would know your name and I would never be able to forget it.

We were introduced at the beginning of 2004, I knew nothing about you.  I googled you like a new girlfriend, trying to find out a little more.  The words blurred on the screen as tears filled my eyes when I read about the things you had done to others and what you could do to me.  I was 22 with two kids and ready to get married yet you suddenly filled my world.

You became the barrier between myself and everything I cared about.  You stopped me when I wanted to play with my babies, you laughed as you sat in-between my husband and I in bed, you revelled in your ability to stop me leaving the house and seeing friends.  You became the lump in my throat when I couldn’t bear to speak the words of ‘accidents’ and ‘soiled underwear’.

As the years went on, I learnt about every weapon I could use against you, my invisible passenger.  I learnt the names of the drugs that I hoped would kill you.  I took tablet after tablet, living with the side effects of medication that was almost as much of a twat as you are.  I ingested meds that reduced my immune system so much that I caught every bug going.

When I became pregnant with my third baby, you seemed to not want to share my body with my precious boy.  You made me thin and weak, you made me bleed so much that the doctors were fearful of my ability to deliver him and I had to have blood pumped through me to make sure we were ok.  But I make strong babies, babies that can kick your arse and when I delivered my boy, you were the last thing on my mind.

Eventually, in 2013 I learnt about a way that I could finish you off.  It was drastic but I hated you so much that I found the courage to stand up to you.  I gathered a mighty NHS team behind me to cut you out of my life.  I donned my armour that strangely was left open in the back and came with stockings…  With scalpels instead of swords, my team fought you.  They couldn’t get rid of you, so instead they took your home.  My colon was cut out, taking you with it.  No home, no you..

I awoke from this battle, wearied and worn.  My battle scars were patched up and my team surrounded me, telling me that you were gone.

I looked down to my body and gently touched the ileostomy bag that was attached to my stomach.  A sadness struck me but was swiftly replaced by a feeling of pride.  I had stood up to you and battled hard.  My bag was a symbol of this.  It showed that I was tougher that you, I wasn’t scared of you, I won you…

Months later my NHS team of awesome reconvened at the battle site, these wonderful people patched me up and reattached my small intestine to my bum ridding me of my bag and giving me a jpouch.

Over these post battle months I have realised that to beat you personally, I not only needed to find something special inside myself but that I couldn’t beat you alone.  My NHS team were those frontline soldiers but I needed to look around me to find a team that would help me with the massive changes.  A team who made everything easier by listening, by loving, by never judging.  A team who made that lump in my throat disappear, who made me know that I could say anything about you and they would still love me.

I am learning a new way of life now you are gone.  Oh, Ulcerative Colitis, you are gone in me but what no one tells you is that your absence leaves a whole host of other issues.  But having fought you and won, I know I can face anything else.

People think when you win, it is because of your physical claws in the guts of sufferers.  But in reality you win when you create the lump in the throat.  When you silence your victims like a parasite, whispering in their ears that you will humiliate them.  And so I am here to tell you… I won’t let that happen.

I won my own personal battle but there is a war to be won.

I will fight you every step of the way for the hundreds of thousands of people in the UK that you live with.  I will fight the lump in the throat by shouting from the rooftops about you.  You WILL NOT hide as an invisible illness while ever I have a voice.

I will talk about you.  I will #stoppoobeingtaboo.  I will talk about your awful ways.  I will never stop.

I will raise money until there is a cure.  I will support Crohns and Colitis UK.  I will fight.

Ulcerative Colitis, you think you know me because you lived inside me for so long, but you are mistaken if you think me weak.  I am powerful.  I am strong.  I am your worst fucking nightmare.

 

Watch your back Ulcerative Colitis, because So Bad Ass is coming to get you….

 

Sam x

 

Fecal Transplant – Would you? Could you??

A fecal transplant, also known as Fecal Microbiota Transplantation (FMT), fecal bacteriotherapy, fecal transfusion, stool transplant, fecal enema, and human probiotic infusion (HPI), is a procedure where fecal bacteria is transplanted from a healthy individual (usually a partner or close relative) into a recipient to introduce healthy bacterial flora to a person’s gut.

Am I talking about eating someone’s poo??

Well, yes kind of! Transplants occur either through an enema straight into the back passage or through a nasogastric or nasoduodenal tube… The healthy stool is taken (after many health checks on the donor) and mixed with saline to create an infusion that is then given to the recipient.

“The aim of this procedure is to reestablish the normal composition of the gut flora, restore balance in metabolism, and stimulate both the acquired and the humoral immune responses in the intestinal mucosa after disruption of the normal flora” MARKUS D. AGITO, MD

bristol stool chart mug

C.Diff (Clostridium difficile) is a type of bacterial infection that can affect the digestive system.  The symptoms can range from mild to severe and include: diarrhoea, high temperature and painful cramps.  It can also lead to life-threatening complications such as severe swelling of the bowel from a build-up of gas.  In cases of C.Diff, fecal transplants can cure the infection in just one treatment so you can see why some experts are calling for it to become the firstline treatment!!

It has also been hailed as a treatment for Ulcerative Colitis, with studies saying that multiple infusions of the poop soup could bring long term remission in IBD patients.  Fecal transplants for Ulcerative Colitis are still in the investigational stage, so panic not that your consultant is going to make you eat poo quite yet! I would be wary of any sites that profess the transplants as a ‘cure’ or the ones who offer tips on DIY fecal transplants… *shudder*

But as medical options are often looking back to more natural, traditional ways perhaps studies can proven that this works? The concept of treating fecal diseases with fecal matter originated in China a thousand years ago and called “Yellow Soup”, who knows what the future will hold for this, perhaps in years to come this will be the norm?

post op so bad ass sam cleasby j pouch surgery sheffield

At this moment in time, the thought of it makes me feel sick, but I do remember being so poorly, so ill in hospital that I would have done ANYTHING to feel better and so perhaps if it had been offered to me then, I would have taken the chance.  After all, the medication we pump ourselves with have a list of side effects longer than the colon they took away! Why not look at natural remedies?

The CCFA (Crohns and Colitis Foundation of America) says this:

“CCFA has adopted a position on FMT which states “Clostridium difficile infection can occasionally be very difficult to eliminate and usually requires the administration of more antibiotics.  In cases where antibiotic treatment fails, use of fecal microbial transplantation has been implemented… A more challenging question is whether fecal microbial transplantation can be a treatment for inflammatory bowel disease, in the absence of Clostridium difficile infection. It is known that the gastrointestinal microbiota of inflammatory bowel disease patients contains different bacteria from that of people without IBD or those with IBD in remission. These observations suggest that FMT may be a possible treatment for IBD.  There have been, however, no definitive, good quality research studies.   Only small case series have been reported suggesting that FMT may be beneficial for treatment of active IBD but there is concern that the results may have been biased by the low quality of the study methods utilized.  It should also be noted that unlike for C. difficile where a single treatment may be effective, in IBD patients, maintenance treatment with multiple coursed of FMT may need to be considered.  Therefore, treatment of Crohn’s disease or ulcerative colitis with FMT should be considered experimental and only performed as part of a properly designed and supervised research trial.”  

It is available on the NHS for treatment of recurrent C Diff, their website says it “is probably the best treatment currently available.”  With studies being done, if it is proven to work for IBD, this could become a normal treatment for people with Ulcerative Colitis!

So what do you think?? If you were offered this treatment that was safe, proven and a LOT cheaper for the NHS but is frankly, gross, would you?

Could you?

 

Love Sam x