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#MyDailyIBD – a 365 photography project for IBD Awareness

As we approach a new year, I came up with a fun little project that I thought might help share our IBD stories and raise awareness while we go.  I love photography, it is so special what we can emote in one image and so I thought I would begin #MyDailyIBD.

The idea is that you take one photo a day that shares an element of your IBD life relating to a specific topic.  Each month, I will share a board with the topic of the day and you can take a photo and share on social media (instagram, twitter, Facebook, pinterest).

You can be as literal or as creative as you like!  Using the hashtag #MyDailyIBD and tagging me in means others can look at your images and you can see what other people are sharing too.

This is meant to be a fun project that anyone can get involved in and by this time next year, you will have a photo diary of your IBD life.

IBD is often seen as an ’embarrassing illness’, the poop factor makes people feel uncomfortable talking about it.  My aim with this blog has always been to raise awareness, to #StopPooBeingTaboo and to let the 5 million people worldwide with IBD that they aren’t alone.  This project encapsulates all of those ideas and I hope it will be a positive and helpful project.

Don’t worry if you miss a day, just pick up on the next day and carry on.

#MyDailyIBD

#mydailyibd sam cleasby sobadass

 

 

Each day take a look and share an image that relates to that date of the month, so on the 1st January, we will start with a New Year Selfie, share on whichever form of social media you like, use the hashtag #MyDailyIBD and #NewYearSelfie and then enjoy looking at what other people are sharing.

This might work really well, or be a huge flop! Either way, I will be doing this for a personal collection of photos of my year, so even if you choose not to take part, you can peruse my photos on Instagram, Twitter, Facebook and Pinterest.

I hope you will get involved and share the idea far and wide and we can get people talking about IBD.

 

Love Sam xx

The #GetYourBellyOut birthday ball 

I was super excited to be invited by Crohns and Colitis UK to attend the #GetYourBellyOut 2nd birthday ball with them.  As it was Timm’s birthday, he came along too!

#GetYourBellyOut is a great group who raise money for CCUK and awareness of life with Inflammatory Bowel Disease.  To join in the campaign, all you have to do is upload a picture of your belly to your chosen social media accounts using the hashtag #GetYourBellyOut! You DO NOT have to have IBD to join in the campaign, just a willingness to help raise awareness!

You can also make a donation by sending the text IBDA99 and your donation amount E.g. ‘IBDA99 £3’ to 70070 (UK mobiles only) or you can donate to the JustGiving page online here. ALL donations go to Crohn’s and Colitis UK.

The event was held at the National Motorcycle museum in Solihull and it was an absolute blast! It was amazing to be in a room filled with so many inspirational and wonderful people, stories were shared and the drinks flowed as people talked about their own IBD journeys and the difference that the campaign has made to their life.

IBD is known as an embarrassing illness and it can be hard for people to speak out about their illnesses and how it affects their lives.  So to be at this event where everyone is speaking openly (I was going to say ‘poo was on everyone’s lips’ but that sounds very, very wrong!) was just brilliant.

#GetYourBellyOut is doing amazing work and I was so chuffed to be invited, here are some of the photos from the night.  I’d highly recommend you head over and check out their work.  Someone asked me if I felt in competition with the group and with other IBD bloggers, and I can wholeheartedly say NO!  I think we are all on the same team and we all do what we do to try and make the lives of other people better.  I happily promote and share the work of other bloggers because I want to get everyone talking about their health, it is all about raising awareness and the more voices out there, the better.

When I was diagnosed with Ulcerative Colitis in 2003, there was so little support, the internet and social media have brought together so many people who are willing to speak out and to offer help to others and that is just so special.  I started this blog in early 2013 when I couldn’t find much info and support in the UK, nowadays there are so many more blogs, websites and support groups and this can only be a good thing.

Let’s celebrate all those who work hard in tough circumstances to shout out, to stop poo being taboo, to raise awareness, raise money and work to find a cure.  The Get Your Belly Out birthday ball was certainly a celebration of all those things.


Thank you guys for all your fantastic work!

I suppose it is only right that I get my belly out for this event, so here you go!

 

Sam xx

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

So Bad Ass goes to Parliament

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

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

sam cleasby so bad ass parliament ibd blogger

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

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

sam cleasby so bad ass parliament ibd blogger

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

houses of parliament london

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

sam cleasby so bad ass parliament ibd blogger

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

sam cleasby so bad ass parliament ibd blogger

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

sam cleasby so bad ass parliament ibd blogger

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

 

Sam xx

Bloggers Lounge Blogger of the Year finalist!

That’s me!! I am a finalist in the Blogger’s Lounge Blogger of the Year Awards in the category of Charity & Social Blogger! From many entrants, I have been shortlisted and am 1 or 5 finalists. Woo hoo!!

I am having a tough time with my health right now and so this has really boosted my spirits.  I love writing and this blog is my passion, it has helped me get through the toughest few years of my life and to know that it has helped so many others just feels amazing.

People don’t like to talk about poo and embarrassing illnesses regarding bums, but I do think times are a-changing and more and more I see news articles and stories about life with IBD and many other chronic illnesses and disabilities.  This can only be a good thing and I am proud to shout loudly and be the voice of those who don’t feel able to speak out.  I love being The Poo Lady!

So I am asking for your help!  If you could go along to the Blogger’s Lounge website and vote for me, that would be awesome!  It takes only a minute and you don’t need to leave your details. Just head over to http://bloggers-lounge.co.uk/bloggers-of-the-year/blogger-of-the-year-2015/, scroll to the Charity and Social category, click my blog name and press submit!


Whilst there, do check out the other categories and if you love any of the other blogs, get voting!

 

Thanks

 

Sam xxx

World Ostomy Day

Today is World Ostomy Day! This is like my poo lady Christmas!

When I had my surgery, I never thought I would be celebrating my Ostomy but as I have learnt to accept my illness, I can recognise that my Ostomy was the start of a new life for me. It is a different life to the one I imagined but my ostomy has had so many positive effects on my life.


Writing about ostomies, jpouches, IBD and invisible disabilities is an honour and a privilege and I have heard so many stories both of struggle and of overcoming adversity.


Today lets celebrate our ostomies whether we still have them or not!  I now have a jpouch and so no longer have my ostomy but I loved my stoma that helped my body come through ulcerative colitis.


Having your body change so massively can be a huge challenge, both physically, emotionally and mentally.  It can be a very isolating experience and so talking out about life with an Ostomy is so important to help others.  I speak out in the hope that people following in my path will have a slightly easier time.


If you need support or help, here are a list of amazing people that I would highly recommend.

Colostomy Association

IA Support

Crohns and Colitis UK

Feel free to share my World Ostomy Day images with links to www.sobadass.me or make your own pictures to share and celebrate!

 

Sam x

Wonder Woman Wednesday

Each week I celebrate wonderful women that have rocked my week.  I’m going for groups and collaborations this week as I really think that together, women make an unstoppable force!

This week is all about these bad ass ladies…

 

Girl Gang Sheffield


Girl Gang is a Sheffield based, female centric events company run by Vanessa and Ellie, two amazing women who are spreading a bit of naughty fun through the city!

From film nights to music events the brain children of Girl Gang are kicking ass. By day they are the owners at Creepstore and Handmade Cinema and I for one want to be in their gang!

 

Seven Hills Women’s Institute

 

Seven Hills WI is Sheffield’s largest WI and has hosted both myself and my husband as guest speakers over the last couple of years.

As they say themselves, they are more belly dancing and bellinis that Jam and Jerusalem!  Interested in joining? They are full this year, though you can go along as a guest, but you can put your name down for next year here.

 

Get Your Belly Out

 

Get Your Belly Out is a campaign aiming to raise awareness of Inflammatory Bowel Disease, more commonly known as IBD.  Founded by 4 campaigners, they have raised awareness and a shed load of a cash for Crohns and Colitis UK! 

They also just got a Pride of Britain award!!! Ladies, I salute you!

 

Everyday Sexism

 

The Everyday Sexism Project exists to catalogue instances of sexism experienced by women on a day to day basis.  These guys are making a huge difference and getting the world to speak out about the unacceptable, yet often overlooked sexism that women face every day.

 

Go take a look at some of these wonderful women and celebrate the women in your life who bring you joy and to quote Girl Gang “Do rad stuff and change the world!”

 

Sam x

What is a Jpouch?

Though I have talked a lot about my different surgeries, I know it can be a bit confusing and difficult to understand and so I thought I would dedicate this post to explaining exactly what a jpouch is.

A  j-pouch has a few different names which can cause a little confusion, it is also referred to as an ileal pouch-anal anastomosis (IPAA), an ileo-anal pouch, restorative proctocolectomy, s-pouch, w-pouch or an internal pouch and it is a bag formed from the small intestine that is attached to the anus.  It was was pioneered by Sir Alan Parks at St. Mark’s Hospital in London in the early 1980s.

“It is a surgically constructed internal reservoir; usually situated near where the rectum would normally be. It is formed by folding loops of small intestine (the ileum) back on themselves and stitching or stapling them together. The internal walls are then removed thus forming a reservoir. The reservoir is then stitched or stapled into the perineum where the rectum was. The procedure retains or restores functionality of the anus with stools passed under voluntary control of the patient.” (via Wikipedia)

In simple terms, when the large intestine (colon) has been surgically removed, doctors create a pouch out of the small intestine that is attached back onto the anus.  This pouch acts as a store for waste matter so that patients regain the ability to ‘hold it’ when they need to poo and therefore improves life quality.

what is a jpouch

 

Ileo-anal pouches are constructed for people who have had their large intestine surgically removed due to disease or injury, this could be from;

  • Ulcerative colitis
  • Crohn’s disease
  • Familial adenomatous polyposis
  • Colon cancer
  • Toxic megacolon

It is entirely internal and not the same as an ostomy in any way.  From the outside you can not see anything and people with a jpouch go to the toilet and poo in the same way as anyone else.

 

Immediately after surgery, the patient tends to pass liquid stool with frequent urgency, up to 20 bowel movements per day, but this eventually decreases with time. Because the  jpouch is a considerably smaller space than the colon, patients tend to have more frequent bowel motions; typically 6-8 times a day.

Also because the small intestine does not absorb as much water as the colon, poo is much more fluid than usual and some patients need to take daily medication to slow the process and thicken the stool.  Because of the loose stools, more water is lost and patients can get dehydrated easily and can also suffer salt deficiency. For this reason, some are encouraged to add extra salt to meals or electrolyte mix drinks.

Because the ileum does not absorb as much of the gastric acid produced by the stomach as the colon did, poo also tends to burn the anal region slightly meaning many patients need to use wipes and barrier creams.

One complication of a jpouch is Pouchitis which is an inflammation of the ileo-anal pouch. The symptoms are normally somewhat similar but less acute than those of colitis, and include (sometimes bloody) diarrhea, urgency or difficulty in passing stools, and, in few cases, pain. The standard treatment for pouchitis is a course of antibiotics.  Other complications that can occur are pouch fistula, and pouch stricture.  Early complications can be leaks and the pouch coming apart which will require more surgery.

I can’t find any official success stats but I can say that my surgeon told me this.

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So you can see that even though this surgery is called a ‘reversal’ (meaning it is reversing the surgery of having a stoma/ostomy), it is not that simple and people with a jpouch have their lives changed forever.  You read an awful lot of negative stories about jpouches, but I always think that it is because all the people who are having a good experience aren’t on the internet telling you about it, they are off living their lives!

For me it has been 18 months since my surgery and in the early days, I did struggle and wonder if I had done the right thing.  As time goes on, life is getting a lot better.  I go to the toilet around 8 times a day but usually without urgency or pain.  My jpouch is working well and I am happy with it.

It hasn’t rid me of all the extra intestinal manifestations of having IBD, I still struggle with fatigue, bad joints and sore eyes.  I still take medication every single day and I have had to accept that i have a chronic illness that will never go away, an auto immune disease that affects my whole body.

I hope this post has answered some of your questions, the more we all speak out, the better it is for everyone.  I aim to educate, raise awareness and as always to #StopPooBeingTaboo

 

Love 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

Pancreatic Cancer Petition

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

“Hi Sam,

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

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

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

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

Yours sincerely, Ellie x”

 

pancreatic cancer petition

 

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

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

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

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

Please go sign now.

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

So please, sign.

 

Sam x