My name is Sam Cleasby and I’m from Sheffield, I was diagnosed with Ulcerative Colitis in 2003 and had a Colectomy and Ileostomy in 2013. This blog is about support, real life stories and information along with fun, laughter, honesty and terrible arse jokes. It is about improving self esteem and positive body image in everyone, it is about loving your body, celebrating your awesomeness and being proud of who you are.
I know the pain and embarrassment that IBD can cause, I know how it affects quality of life, work and relationships. This blog is about shouting out about our disease and spreading the word. It is about YOU not feeling alone, it is about breaking taboos and sharing experiences. It is about living with a stoma and speaking out. This is for all of you who are bad asses WITH bad asses…
This website is for anyone who wants to be more positive, who wants to improve their self esteem and learn to love their bodies whatever their size or shape. Whether you have an illness or not, it is about shouting out and being proud of the wonderful person you are.
This is my IBD story…
In 2003 after the birth of my second child I noticed blood on the tissue after going to the loo, I assumed it was piles and just tried to ignore it and get on with life. The bleeding continued and got worse over the course of a few months, I was also experiencing bad stomach cramps and diarrhoea. One evening I went to the toilet and pretty much filled the bowl with blood, I was terrified and convinced I had cancer, I took myself to A&E in an absolute state only to be told that it was probably piles and to make an appointment to see my GP.
The following day I was feeling worse than ever, I was bleeding a lot and in a lot of pain. I remember sitting on the bottom step feeling faint and then the next I remember is being in an ambulance. I thought I was dying and just closed my eyes. I woke up in the A&E (a different hospital as my husband didn’t want to go back to the one that had sent me away the day before!) with a mask on and tubes in my veins. I was very dehydrated and anaemic and after they stabilised me, I was sent for further tests and after a few days a diagnosis of Ulcerative Colitis was made.
I had never heard of this before and so went off to google (actually I think it was still Ask Jeeves in those days!!) What I found seemed to be a horror story, all the talk of ulcers and bleeding, surgery and bags! I was 22, engaged to be married and had two children. I felt like my life was over.
So I was started on a course of treatment that although it angered me that I had to take all these drugs just to be a normal person, did start to ease my symptoms and eventually after a few months my flare up went into remission. I found the process very stressful though, before this, whenever I had been ill, I went to the GP who told me what was wrong, what to take and when Id be better. Now suddenly I had this disease cast upon me that I seemed to have to understand completely and be able to manage pretty much alone. The doctor would tell me to adapt my dosage to how I was feeling but I had no idea what was happening to my body! I felt totally alone, completely embarrassed and excuse the pun, absolutely gutted that this was happening to me.
My next flare up came during the pregnancy of my third child, I was trying to deal with two children under 4, a pregnancy, a husband who worked away for 9 months of the year and suddenly yet again I could barely leave the house due to diarrhoea and bleeding. I was put under consultant led care for the pregnancy and onto a carefully balanced series of drugs. I eventually ended up being admitted back into hospital – I had lost a lot of weight and was very anaemic. I was given blood transfusions to help me in the event of labour. Thankfully my son was born completely healthy and had no affects from the drugs during pregnancy.
What followed were years of flare ups and remissions, I never know when a flare up is coming or when it will end. I have never found any pattern in my eating habits or anything else. In 2011 I ended up back in hospital with UC and due to my compromised immune system I picked up flu whilst I was there, between the two things I felt completely wiped out. I remember my usually happy go lucky brother in law visiting me in hospital and when I saw the look on his face as he sat ashen and looking close to tears I thought ‘this is it, Im going to die’
I didn’t die (obviously!) but I did feel extremely depressed and low during this time. I told my husband that he should leave me as he didn’t deserve to have to put up with it all, I became very hateful of my body – I couldn’t understand why this was happening to me. I was angry, embarrassed and totally fed up.
In 2012 after another admission to hospital I made the decision that I wasn’t happy with the care I had received so far. I felt that I was getting differing opinions a lot, that I never knew from one doctor to the other what was happening and that my treatment from some nurses whilst I had been an in patient was just not good enough. I would have to wait hours crying in pain for the medication I was due, buzzers would be switched off without the nurse ever coming to see me. I was called in for an endoscopy (camera down the throat) after one lot of tests. I was scared as I thought they must have found something else in me. I went to the hospital so stressed I thought I would throw up, the nurses took me to the treatment room and numbed my throat.
Then the endoscopy woman came in, she prepared the instruments and checked my notes. “Why are you having this?” she asked. I mumbled through my numb throat and mouth that I had been called back for this test. It turned out that a mistake had been made – I didn’t need the endoscopy at all. When I read this back I can’t believe I put up with it for so long, but you see, sick me didn’t have the confidence and ballsyness to demand adequate care. Well me would have made sure heads rolled, but sick me couldn’t deal with any more stress.
I am currently under a new hospital and so far I am extremely happy with the care and support I have received. My specialised IBD nurse is a gem, she is there to advice, support and sympathise when I need her. She has just the right balance of letting you know what she thinks you should do whilst being open to your feelings, worries and expectations.
I went onto a course of oral steroids, when I saw the list of side effects I was terrified but feel like they are a necessary evil. I had terrible insomnia, weight gain, hairiness, mood swings, anxiety and many more side effects.
The knowledge of these drugs led me to a place where I was considering elective surgery, I didn’t want to pump my body with medications whose side effects can be worse than the disease itself!
I run a photography studio with my husband Timm and so I am able to work around my UC – if I have a bad night I sleep in the morning and then work in the afternoon and evening. If I am having a bad flare I work from my bedroom so I can be close to the toilet and rest when I can. I have worked for companies before and ended up leaving during a flare as I just felt that I was letting the team down and I was too embarrassed to explain exactly what was wrong with me. So running my own business means the world to me, it means freedom and independence and makes working with IBD so much easier but still made life complicated.
In May 2013 I started with a flare up of Ulcerative Colitis, the meds I have taken before had no effect and so I was put onto a course of steroids. The steroids brought the flare under control and so I began the long taper off the meds – you cannot just stop taking prednisilone as your body stops making the steroids needed, so you have to decrease your dose slowly over a matter of weeks and months. When I tapered down to 10mg after several weeks, my flare up began again. The dose was increased back up but my flare wouldn’t get under control.
So at the end of August 2013 I was admitted to hospital for a course of IV high dose steroids. I was passing a lot of blood and was very poorly. After 6 days of intensive IV steroid therapy along with a whole host of other drugs, the decision was made that surgery was the best option for me. There were some other drugs I could have tried but I had strong feelings against them, I felt that the potential side effects were actually worse than the colitis. As I had already looked into surgery as an elective procedure, the decision wasn’t a huge shock to the system but making that life changing decision was a biggy.
On 3rd September 2013 I had a sub total colectomy and end ileostomy. I now have no large bowel and live with a stoma in my stomach, I wear a bag to collect all my waste and my life has changed forever! During my treatment I have blogged my heart out, it has helped me to deal with the changes in my life and feels good to talk honestly about my illness, treatment and life. I blog in the hope of making poo no longer a taboo… I hope that reading my blog helps people to deal with their own situation.
In May 2014 I had another surgery to create an internal j pouch from my small intestine and reconnect my digestive system so I no longer have my stoma. I am currently on a long road to recovery from this surgery but continue to blog and try and raise awareness.
I want to talk a little about my husband Timm, he is my rock and I don’t know how I would get through my days without him. He is always there for me both physically and emotionally. He takes me to appointments, looks after the children whenever I need to rest and is endlessly patient with me. He tells me that no matter what, he will be here for me. He tells me Im beautiful when I know Im a sweating, weeping wreck. He makes me laugh when I need it and lets me cry when there are no other words to use.
Without him I think my story would be different but having someone who supports you so much means that self doubt, anger and sadness only have a fleeting place in your life. When I am down he is the one person who can pick me up and make me laugh. Tonight he said “I love you hairy moonface” as he has been reading the side effects list of the steroids. I know this may sound cruel but believe me, it made me spray out my tea and howl with laughter.
I wanted to start this blog to give information and support to fellow IBD sufferers, not in an NHS direct way, not in the way that your doctor or nurse does and not in the hopeless depressing way that *some* support forums do. I want to talk honestly about the disease, break taboos and tell arse jokes. I want to not let this disease rule who I am, but to stamp my personality ALL OVER THIS SHIT!
I want to let other IBDers know that just because you have a bad ass, it doesn’t stop you from being badass…
I would love to take submissions of your IBD story, your Stoma story or your story of self esteem and body image, for any submission requests please contact me.
You can find me on twitter at @so_bad_ass or Facebook at www.facebook.com/SoBadAss1, I also write for the online side of Psychologies magazine as one of the Life Lab Geniuses… Check me out over there and click follow to get updates of my articles.
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