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Bad days. And good!

I’m not having a great day today, I’ve had a stinking cold for a couple of weeks and I think my immune system has taken a battering and so I have been up a lot in the nights going to the loo. 

I woke this morning and my joints are absolutely agony.  My body is feeling broken and very, very old. I have been ignoring and trooping through for a while but today it is time to listen to my body and stop.  Today is about laying on the sofa and watching terrible day time TV.  My body is speaking and I am listening. 

I am pretty stressed at the minute and I don’t think that has helped.  Our car broke a month ago and we’ve been trying to get it sorted, it turns out it’s not worth spending the money on and so we have to buy a new one.  It’s money we could really do without spending/losing now.  Our rental house is going on the market at the start of next year and so we are house hunting.  Our work load has been HUGE over the summer and we are playing catch up.  And family stress of close relatives taking umbrage with something I have done (I have no idea what!) means I’m being deleted and blocked on Facebook and talked about behind my back. Part of me wishes they would just speak to me and tell me what’s wrong. The other part thinks I just don’t need the stress. 

I thought I would share this on here as it is how I have always dealt with my illness for the past two years. But then I thought about how I have been a little quiet of late on here about my health. And the reason for that is because it has all been loads better!  With a balance of meds, probiotics, diet and exercise things have been great and I haven’t had much to report. 

It made me think about how sometimes ostomies and jpouches have a bad reputation because we only talk about them when experiencing problems.  It made me want to try harder to write about all the positive things that have happened to my body since getting surgery, about how much better life is. 

And so I will try to remember to write about the good days as much as the bad days. 

Just not today as my hands and wrists have had enough. 
Sam x 

Competitive sickness

I love the internet.  I think it’s amazing to have all the information in the world at your fingertips, we are at an unprecedented time where we can access anything and everything.

When you have an ongoing chronic illness like Inflammatory Bowel Disease, the lack of control in your life can be difficult to deal with, I always believe that gaining knowledge of your circumstances can make life a little easier, knowledge is power as they say.  I recommend to anyone going through illness to read up and know your own body.  Know what your treatment options are, what side effects your meds have, what you can do yourself to heal.

The NHS website is always a good starting place, but when I got very ill last year with Ulcerative Colitis I found that I wanted to know about personal accounts of illness, how it is in real life.  I wanted to read about real people and not medical jargon or terrifying medical photographs.  I struggled to find a UK based blog about IBD that I liked (though there seems to be LOADS now which is brilliant!!) and this is the reason I started So Bad Ass.

I found myself this year visiting forums and Facebook groups dedicated to people with IBD, I love that these groups stop you from feeling so alone, I have “met” a few people online from all over the world that I wouldn’t have had the chance to meet otherwise and feel inspired by them and think they do an amazing job at raising awareness and positivity around IBD, ostomies and jpouches.

But, and here is a BIG but… I have left a LOT of groups and forums because of one thing in particular, competitive sickness.

Now competitive sickness is when you have someone who, if you have had 3 surgeries, they have had 6.  If you ask a question about your medication, they will reel off a list twice as long.  If you are struggling because you have a wound that won’t heal, they have had to have a pig skin transplant… (that really happened)

To quote my brilliant step son, if you have been to Tenerife, they have been to Elevenerife!

I am poking fun a little here, of course we should all be sharing our stories.  The more we talk, the better informed everyone becomes.  But I am sure you know that one person who has always had it worse than you?!  They are always negative and the drama llama levels are sky high and they seem to have faced every illness known to man and had every complication going and they are going to complain about it ALL.

Of course I want to know about possible side effects, I want to hear personal accounts of surgery and not just the ones that have gone perfectly! But there are some who are just SO negative that it can really bring you down, scare you, make you feel like this illness is the end of your world.

I think everyone’s idea of support is different and so all you can do is have your own filter.  If someone’s story makes you feel terrible, it is probably best to not listen.  You can find out about negative parts of an illness with it being in an entirely negative way.  Support groups are meant to help, not hinder and so if you find yourself listening to a story that is dragging you down, remember you don’t have to listen! Cut the ties and float away from it for now!

I am sure that my stories and posts on here are not always everyones cup of tea.  I totally accept that and would advice you use the same filter technique here too.  If my posts are helpful, interesting, inspiring and make you feel good then fantastic.  If it is hitting a nerve that day, turn me off!

 

Love Sam x

Tramlines – what a difference a year makes

Tramlines is a city centre festival in the great city of Sheffield, it’s an amazing thing and my lovely husband Timm is one of the festival directors and the production director so each year I’m lucky enough to get a little pass that allows me to hang out backstage and have a generally fantastic time.

But it also serves for me as a fixed point in time that makes me realise how far I have come in a year. You see, at last years festival I was ill. I was 5 months into the worst flare up of my life but I was trying my hardest to hide it.

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This photo was last year, I felt like death warmed up…

I was on a lot of meds and in my heart, I knew this time felt different. I was bleeding constantly, I had to wear pads in my pants as there was just so much blood. My stomach was agony and I was running to the toilet every few minutes. I didn’t feel up to going to be honest, but felt it was important to try and be normal and to show Timm my support.

I remember standing near the loos after yet another mad dash, doing as fast a walk as I could get away with, without looking insane to the toilets. I was with Timm’s sister Nancy and friend Michelle and I was telling the that things weren’t good. I’m close to Nancy and she knows everything about my illness and is a massive supporter of me and this blog.

I was telling her about the possibilities of future surgery, I remember quite naively saying that after the second op they just join everything back up and I’d live a normal life pooing just a little every time I had a wee! It all sounded so simple on paper and easy to describe, I don’t think I’d put my emotions into it and thought about the emotional and mental changes that would occur.

The whole conversation was very much hypothetical, I knew about the surgeries but had no idea that within 5 weeks of the day I would be on the operating table having my large intestine out.

So Bad Ass didn’t exist at this point, I was still quite embarrassed a lot of the time about my disease. Family and close friends knew but I kept it quite under wraps. I spent the weekend throat tightingly close to tears as I just felt so poorly and under so much pressure (from myself) to keep it together.

So roll it forward one year and I just can’t believe all that has happened in the last 12 months! This years Tramlines has been amazing. I stood in pretty much the same spot with Nancy and Michelle thinking how good it felt to be on only one medication (loperamide) that has NO side effects that cause me to get a big swollen mood face, manic episodes or total insomnia!!

A year into writing So Bad Ass, pretty much everyone knows what I have been through and so I felt no pressure to hide anything. I got so many amazing people coming up to me to tell me they read my blog and love it. It was quite emotional to know that I have made a teeny tiny difference to peoples lives.

Friends, Timm’s work colleagues, total flipping strangers(!!!) were coming up to me all weekend to tell me what So Bad Ass means to them and I just can’t tell you how much that means to me. To know that my little blog is being read, shared and is helping others makes me feel humbled and just blown away. Thank you.

One year on, I have learnt about my own strength, I’ve found a confidence I didn’t believe I possessed and though my health isn’t perfect and I’m still on a road to recovery from my j pouch surgery, I feel good!!

I watched lots of amazing bands, hung out with too many awesome people to name, laughed with fantastic friends till my stomach hurt, spent the weekend with my three kids hanging out with me, watched Everly Pregnant Brothers, the best northern, ukulele, pun based band you will ever hear, on Kelham island whilst the sun set.

I jumped about and went mental whilst watching Public Enemy then met Chuck D and Flavor Flav (yeahhhhhh boiiiiiiii)

I watched a woman hang by her feet and juggle swords upside down.

I drank my body weight in gin and peach iced tea.

I saw so many friends and got to hang out with them (even if it were only briefly with some)

I felt confident and well.

I felt no shame.

I felt happy.

Thank you Tramlines for the best year so far, I had a blast!!! Who knows where my life will be in another years time?!

Here are some of my favourite photos of the weekend…

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5 ways to keep a relationship strong through chronic illness

All relationships have ups and downs, it can be hard work to keep a strong relationship when times are tough.  I thought I would write about how chronic illness can affect a relationship and ways to get through the shitty times to stay strong together.

I met my husband Timm 15 years ago in a nightclub in Sheffield called The Leadmill , (Im sure EVERYONE in Sheffield met one partner or another there…) we married 10 years ago shortly after I had been diagnosed with Ulcerative Colitis so it is a disease we have learnt about together through the years.  Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel pouch.

subtotal colectomy end ileostomy surgery ibd ulcerative colitis sheffield sam cleasby

During my ten years of illness I have faced extreme fatigue, bleeding, aching joints, diarrhoea 30 times a day, incontinence, so many different types of medicines and treatments, endless doctor and hospital visits and stays, two surgeries, a compromised immune system that means I pick up every bug going and more days than I can recall that I just couldn’t get out of bed.  During this article I am talking about Ulcerative Colitis but the same goes for anyone living with chronic illness.

1. Be honest with one another

Being chronically ill sucks, it makes you feel alone, and filled with anger, sadness, guilt and hurt.  It is so important to be able to share how you are feeling with your partner and for them to share with you.  It is hard to share those feelings with someone, and even harder to hear them from someone you love, but you need to make time to share honestly and openly.

Without honesty it is easy to start to assume how the other person is feeling.  Right now I am recovering from surgery and I am so exhausted that I spend a lot of time in bed.  I lay here thinking “I bet Timm is feeling pissed off that Im just laid here.  I wonder if he is angry with me? Maybe he thinks I am lazy.” These thoughts tumble round my head and can make me feel shit.  I don’t allow them to though and I spoke to him, explaining my worries.  His answer was that he is a little quiet at the moment because he feels under pressure to be working, looking after the children and caring for me and he was worried he was failing at it all.

Open, honest communication really is the key to any strong relationship.  It may not be easy, but it is vital.

honesty ibd ulcerative colitis crohns

2. Grieve together.

After my surgery I felt a deep, heavy loss.  I mourned the loss of the body I had, the life I had.  My husband mourned the loss of the wife he knew before illness.  We had to face this together so that we could support one another and learn to accept the new body and new life we had.

To move forward together you need to face your joint fears, get through the sadness and feelings of loss together so you can learn a new way to cope.  Your life after diagnosis may be completely different to your life before but it doesn’t mean it has to be worse.

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3. Step into each others shoes.

Life may suck hard for you if you are chronically ill and facing a life that you never planned for, but you need to take a step back and think of things from your partners point of view.  Think about how difficult it is to see the person you love in pain, how it feels to have to take on the lions share of work or household responsibilities, how it could feel lonely or frightening, how you may feel you have to be the strong one all the time.

On the other side partners of those who are ill need to try and look through the eyes of someone who is chronically ill.  Imagine having constant pain and stress, of having continence issues and the whole host of shame and guilt that comes with that, think how it feels to be ill but feel guilty for it, to feel helpless and useless, frightened of both the illness and the affect it has on the people around you.

If you can both do this, then it is an amazing starting point for discussions about love, support and care.

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4.  Stay intimate

Chronic illness means different levels of illness at different times, it is easy to push away your partner, especially when the issue is IBD as having problems with diarrhoea and bleeding don’t really put you in the mood for sex!  But its really important to make sure your relationship with your partner retains some level of intimacy.  A relationship without intimacy is a friendship, which may be fine for some couples but if that isn’t what you want then you need to address the issue.  Its not just about sex, it is about being close, hugging, kissing and showing each other love and care.

Talk openly about what you want and when.  Sometimes I feel that my illness takes away my sexuality, when Im very ill I just don’t feel sexy, I don’t feel desirable or have any interest in sex.  But thats ok when I tell my partner that, when I explain why Im feeling the way I do it is easy for him to understand and respect.  Without talking it is easy for him to feel pushed away and uncared for.

Equally you need to accept that your partner may have fears or issues with being close to you, they may worry about hurting you or making you feel uncomfortable.

The answer is always to talk, talk, talk.

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5. Enjoy the things you have

Ok, things are different, this may not be the life you planned but it is the hand you were dealt so learn how you can make the most of it.  If you are with the person you love then you are lucky, make it work for the two of you! When you are ill then plans of nights out and country walks may be out of the question, but you can replace them with movie nights in or hanging out in the garden.

Show each other that you love one another, there needs to be no grand gestures, this isn’t about diamond rings, it is about saying ‘I love you’, ‘I appreciate you’ ‘You make my life better just by being in it’

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My husband and I have faced the toughest year of our lives, two surgeries, multiple hospital stays, meds, recovery and a lot of tears.  It could have torn us apart, we have been under so much pressure, emotional, financial and physical but it actually has brought us closer together.  We have never been closer in the whole 15 years of our relationship and that has come through us both taking on board these five rules, talking, loving and appreciating one another.

 

Love Sam xxx

 

Are you ever embarrassed to talk about your illness?

This is the question my daughter just asked me. My answer was yes. Sometimes.

But I talk about it anyway to stop the embarrassment for other people. The more we talk about ulcerative colitis, crohns, stomas, pouches and just poo in general, the less it will be a taboo or something to be embarrassed about.

People don’t like discussing matters of the arse do they? And this is the reason that people will suffer needlessly in silence when they begin with symptoms of the bum variety.

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I understand those feelings but want to fight against them. Sometimes a mum at the school gate will say she’s read my blog. My mind works furiously thinking about what I’ve written about the past few days! And then I smile and thank them, for every person who reads may just have learnt something. Maybe I changed their thinking about something? Maybe I have taught them a way to have a discussion with someone else who has a chronic illness. Or maybe I just made them laugh.

Whatever their thoughts I am grateful that my website has delivered a message to so many people. It means so much to know I’ve had over 40,000 views in the last few months.  I get emails from all over the world from people telling me I helped them.

And so when the embarrassment begins to creep hotly onto my chest and face, I think about the people I have helped and that embarrassment becomes pride.

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This blog, my writing and public appearances, the photographs and the hours I put into developing programmes to help kids with body confidence and self esteem, all of that stuff gives my illness a purpose. And that makes things a little easier when I’m ill, exhausted, taking meds, having surgery or recovering.

I hope if nothing else I am teaching my kids to never be ashamed of their bodies. To embrace all parts of themselves and to be proud of themselves no matter what journey their bodies take them on.

Thanks for reading, please feel free to share this and join me in the fight to stop poo being taboo.

Love Sam

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.

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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.

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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

Hair loss

Since my surgery I have noticed that my hair is falling out. A lot. Every time I brush or run my fingers through my hair I end up with handfuls of hair.  I have always had really thick hair and so it didn’t really bother me at first but now it’s 12 weeks post op and it’s not stopping. My hair feels extremely thin and in rubbish condition I’m having to face the fact that my hair is falling out.

I asked my surgeon about it at my post op check up and he said it was indicative of how poorly I was before my operation. He said 3-6 months after severe illness it can show itself in your hair. He said it should slow down and should stop within 6 months.

I found this through Dr Google…

“A sudden physical or emotional stress may cause one-half to three-quarters of the hair throughout your scalp to shed (called Telogen effluvium). You will notice hair coming out in handfuls while you shampoo, comb, or run your hands through your hair. You may not notice this for weeks to months after the episode of stress. The hair shedding will decrease over 6 – 8 months.

Cause of this type of hair loss are:

  • High fever or severe infection
  • Major surgery, major illness, sudden blood loss
  • Severe emotional stress”

I haven’t heard of this before so if anyone has any advice it would be greatly appreciated.

I’m starting to get paranoid that my hair is looking really thin and I’m horrified at the thought that I could end up with really thin hair or even bald spots!!

Timm is helping by screaming “BALD!!! MY EYYYYYYESSSSSS!!!!” at me…

So anyway I’m due to see my hairdresser on Thursday (the fabulous Kojo & Lee) and I’m considering having a good chop to try and make the best of how my hair is right now and improve my confidence. But I do this all the time, I cut my hair short and then spend a year growing it back!

For the last couple of months I always have my hair tied back in a ponytail or bun to disguise the thinness so it seems a bit pointless to keep it long!

Any advice?

I’ll post photos of new hair later in the week! It may be shorter or I might just have a good trim…

Love Sam xxx

Illness and Ileostomies

Last night I started with a stomach bug, I felt queasy and then the output from my stoma turned to water. My bag was filling extremely quickly, I was emptying once or twice an hour and I felt awful.

I had a google and thought I’d try some Imodium (loperamide) to deal with the very watery output from my Ileostomy. I went to bed after puking with a hot water bottle and feeling sorry for myself. I had stomach pain and felt awful. I was a little worried that it could be a blockage, but from dr google I realised that even if it were, the best things to do were drink hot drinks, massage my stomach and try different positions to sit and lay.

I woke this morning after a really restless night feeling terrible. Still awful diarrhoea, nausea and stomach pains. But worse than all that was my mood. I just felt so down, like this was a setback in my recovery. I don’t think I’m generally one to feel sorry for myself but today I’ve been such a Debbie Downer…

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I hate feeling sick. I’d rather have pain that nausea, that queasy feeling is the thing that drops me to my knees. So today the nausea teamed with tiredness, a leaky bag, soreness and pain has made me a proper mardy arse!

I try to keep chipper through all this but this has knocked me, I’m feeling low and fed up. Tonight we were meant to be having a few friends over, a bonfire, fireworks, good food and sparklers! Instead we had to cancel and Timm had taken the kids to the local bonfire, so I’m sat at home listening to other people’s fireworks feeling pretty sorry for myself.

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The plan is Imodium, plenty of fluids and rest. I’m hoping it will be over soon and I’ll be feeling better. Sometimes we need to go to bed with a hot ribena, a hot water bottle and have a little pity party.

And so I’ll do that, and then pick myself up, shake off the grumpiness and smile…

Sam xx