Just had an email from my consultant saying that he hasn’t formally reported on it yet but wanted to let me know that he isn’t concerned about the shadow and doesn’t think it’s anything to worry about!
So. Bloody. Relieved.
I have to say positivity abandoned me over the last few days but thank you so so much for all the amazing messages of support I’ve received from you lot. It means a lot and I feel so lucky to have such awesome friends, family and readers.
Xxxx
I was 19 when I had my first child, many people said it was too young. That Timm and I were idiots who couldn’t cope with being parents… We probably were idiots. But the minute that not so little bundle was put in our arms it all changed. We realised what the meaning of life was, we had created a human being and it was amazing. Ellie and Thom followed in the next four years and our family was complete.
I love being a mum, yes I may complain about the difficulties, the constantly messy house, teenage dramas and general stress of having a family but I wouldn’t have it any other way. My kids are the best achievement of my life, they are the thing I am most proud of and three of the most important people in the world.
My heart beats for them and Im continually blown away that between myself and that wonderfully weird husband of mine, we managed to create these three perfect, unique, bizarre, clever, funny, kind, talented, beautiful children.
They are the reason I get up in the morning and the reason I fight so damn hard to be healthy and positive. The reason I will go through surgery, medication and recovery so I can be the best momma I possibly can for them.
Life is fragile, it can be so brief. Hold your loved ones close today, tell them you love them.
Happy Mothers Day xxxxxxxxxxx
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Man, I’m grumpy. Like ‘lay on your face, hate the world’ grumpy.
This morning was good, I went for a dog walk with my friend Caroline and then had a morning doing a bit of work and helping her with craft stuff with another friend Rob. We chatted and everything was good.
But this afternoon my mood has taken a turn for the worse.
I’m still stressing about the mass from my ultrasound I know it need to not think about it and just wait and see what they say but it’s just sat niggling in my head.
I have come home and done some work and then opened my emails to a barrage of questions from the letting a agent from our last home. I’m really struggling to deal with this shit. I hate having to be a grown up and totally feel like we are being taken advantage of.
We lived in a house filled with damp and mould for 15 months, despite having the (very expensive oil) heating on, airing the house daily and using a dehumidifier the house was damp and mouldy and our clothes, shoes and furniture was ruined.
We put up with so many problems thinking we were being kind, good and accommodating tenants and now were being treated like mugs. I’m hacked off. Problems were never fixed by the landlord, she would get the cheapest solution possible and if she didn’t want to pay for it then it didn’t get fixed at all.
And now we have left, they want the moon on a stick.
I’m sorry I know this is nothing to do with this blog but it is stressing me out so much I could weep.
I’m sure living in a house filled with mould affected my recovery last year and since moving into our new home we have all noticed a massive difference to our breathing and general wellness but we are being told the damp was our fault due to not heating the house adequately!!
I’m sick of being taken for a mug. I’m sick of having to deal with shit thrown at us all the time. I’m fed up of trying to be a good kind person and just facing hardships all the time.
I’m grumpy. I’m sorry, this is not a positive post. I really need to take some of my own advice right now but I’m struggling to deal with everything.
With this stress plus my health, the upcoming surgery and recovery and just life. I feel like everything is just too much. I want to go hide in a duvet cave and not deal with any of it.
But I suppose I have to man up and deal with it. Timm has been at the house all week redecorating and making sure everything is perfect or they are threatening to keep our bond. They want us to leave the house in a better condition than what we got it in and I fucking hate feeling like we’re being taken advantage of but what can we do? We need the bond back as it will tide us over during my being in hospital for the upcoming surgery.
So I will attempt to reign in my grumps. Tonight all I want to do is hide under a duvet with my family and lock the rest of the shitty world out.
Hopefully normal service will resume shortly but till then please accept my apologies for being a proper mardy arse!!!
Sam xx
They found this thing. They called it a shadow and then slipped the word ‘mass’ into the conversation later. I wasn’t expecting it, I had nervously laughed and chatted through the first part of the test and then the woman, the doctor, testing person, her, she went quiet. She asked me to hold still and stopped talking about her daughter’s shop that she thought Id love. She stopped making that casual conversation that makes the fact she is looking up my arse slightly less embarrassing.
There is this ‘thing’ in my rectal tissue. I don’t know what it is. She mentioned it could be an abscess but said I needed to talk to my consultant. The mood changed really rapidly and I was so surprised that I just gathered my things and left. I didn’t ask any questions or query what she was saying. I didn’t do any of the sensible things, I just felt really hot and the word ‘cancer’ was all over me. I could hear it whispering in my ear, feel it nudging me like I was walking through a bustling crowd of it.
She didn’t say cancer. She never said the word. I keep thinking Im imagining the whole thing. She said she couldn’t say anything more and the consultant would look over the results as soon as possible and come back to me.
The logical part of my head is saying in a matronly manner ‘This, Samantha, is you over thinking it all. It will most likely be an abscess or something easily treatable. No one has suggested cancer. Wind your neck in and stop being dramatic.”
I left the hospital and drove aimlessly, I ended up in a carpark at a shopping centre, driving round to find a parking space, only once I found one I realised I didn’t need to go shopping. I drove to the old house where Timm was working and he chatted away. He stopped and looked at me and said “Everything OK?” “Yeah!” I replied.
Then “No bubs, they found something”
His face fell. I explained and he held me tight. Said it would all be fine and we needed to not get ahead of ourselves. I could feel his fear in his pounding chest, it was banging against mine giving away his anxiety whilst his face and words were soothing and calm.
I did a bad thing. I took a photo of the screen when she left the room for me to get changed. She had even asked me not to when I had asked if I could – “The consultant needs to see this first” she gently explained. Then I did a lot of bad things. I googled and googled and googled. I dismissed the need for years of medical training and diagnosed myself online.
I know this is bad. It is ridiculous and if I were hearing this from another person I would tell them to STOP FUCKING GOOGLING.
You know the funny thing is, that the ultrasound of a rectum is surprisingly beautiful. It looks like a lunar eclipse surrounded by galaxies. It looks like a black and white Van Gogh sun. It looks a lot nicer than you would imagine…
Today I am losing my mind thinking about what it could be, and so I called my consultants secretary only to be told that he is away till Monday and that the results would take a day or two to get to him anyway. She put me through to the clinic where Id had the test but they said the woman is also away till Monday. I imagine them both together, sunning themselves on a Caribbean island drinking cocktails with their heads thrown back laughing.
And so it is a waiting game for this unknown. I am telling myself over and over again that it all will be fine, that the chances are that it is an abscess or something that can be dealt with easily. Im pushing the word cancer out of the front of my mind, cramming it into a dusty trunk hiding at the back of my skull that contains the clowns and frogs.
I am on the verge of tears. Im so frightened. I keep thinking ‘Are you fucking kidding me? Have I not dealt with enough?’ It is so easy to wind yourself into a state of panic, but the words I use to comfort me are becoming a mantra, when I feel the panic rising and beginning to swallow me I repeat “It will be fine” over and over again.
Perhaps it really is nothing, perhaps they will look at it and shrug, something totally treatable and all A-OK. I feel that these bad thoughts of something sinister is just fanning the flames of drama, I need to stop that right now and not let my brain go into over drive. Because at this minute, everything is ok, no one is suggesting the things that are flooding through my brain, only me.
And so I will wait till Monday and speak to my consultant then. Until then I just have to try and keep that trunk locked up tight and not let my imagination run wild.
Sam xx
UPDATE – my lovely consultant dropped me an email to say that it’s “Highly unlikely to be anything but need to see scans” and to try not to worry. I’ll update again when I hear more news xxxx
I was asked to write a little bit about my IBD story for Me and IBD, the youth site for Crohns and Colitis UK and was thrilled to do so. You can take a peek at the site here.
You can read my post below.
My name is Sam Cleasby and I run blog So Bad Ass, Im a writer, public speaker and cheerleader for those suffering from chronic illness.
So Bad Ass came into being as a website and blog about Inflammatory Bowel Disease and specifically my journey with Ulcerative Colitis and living with a stoma. Over the past year it has become so much more than that and I have been inspired to talk more about self esteem, body image and loving yourself.
In 2003 I was diagnosed with Ulcerative Colitis. I had never heard of this before and so went off to google and 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.
What followed were years of flare ups and remissions, never knowing when a flare up is coming or when it will end.
In May 2013 I started with a flare up, after trying to control it with drugs for months I was eventually 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.
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 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. I want to let other IBDers know that just because you have a bad ass, it doesn’t stop you from being badass…
The blog now gets thousands of views every week, I receive so many emails and messages of support and encouragement as well as a lot asking for help and support themselves. I am so proud to have used my illness and surgery to spread the word and raise awareness of Crohns and Ulcerative Colitis. I use my ileostomy and stoma to show images to the world to rid the fear of the bag! I show my audience that having a chronic illness is just one small part of who I am, and that if they just open their minds and look a little deeper, this ileostomy bag does not define me.
I spoke at International Women’s Day this year about Ulcerative Colitis, living with a stoma, body image, self esteem and positivity. I am also developing a workshop for children and young adults to learn about loving their own bodies no matter what they face in life and have more public speaking lined up for this year.
The coming year is one of more surgery (Im going to cease to be an ostomate and become a pouchie!!!) building the blog, raising awareness and generally shouting as much as I can about Ulcerative Colitis, Crohns, stomas and pouches and I run a photography company called The Picture Foundry.
I am also renewing my wedding vows at the end of this year after ten years of marriage with a big ceremony which Im terrified about!! I am using the wedding as a way to raise money for Crohns and Colitis UK though, we are asking our guests to make a donation in lieu of gifts so this year is a busy one.
I didn’t ask for this illness or this life, but I will make the most of every second of it. If I can raise awareness of the disease, it makes it worth while. My surgery, illness and stoma can make a difference and so every day I remind myself that I am so bad ass.
Love Sam x
I was contacted by Charlotte from DMU in Leicester who is doing a project to make lingerie/swimwear for a purpose.
She says “Me and my group have decided that we want to design swimwear that is more suitable to stoma patients as well as concealing the bag within the swimwear and keeping it fashionable.”
I have never managed to find ostomy swimwear that suited me, I do like the idea of having a pouch that holds my bag safely against me but all the swimwear I have seen have been in fabric I thought was ugly and cheap looking, so Im thrilled that students are thinking about this issue for ostomates.
The group have made a survey to help them in their studies.
I have filled in the survey, but if any of you can take a couple of minutes to fill it in, that would be great!
https://www.surveymonkey.com/s/NQXHJGY
Love Sam xx
Im doing more and more writing about self esteem and body image and was asked to talk about ways to feel better about yourself. This is part of my Love Yourself – You’re So Bad Ass work.
My guilty pleasure TV is Ru Paul’s Drag Race, it’s like America’s Next Top Model but for drag queens and its AMAZING. Totally trashy but addictive. Ru Paul has this saying at the end of every episode
Totally right, we all need to love ourselves a little more. And so here are my tips on how to love yourself.
STOP BUYING CRAP WOMENS MAGAZINES – any magazine that sells it’s rag by speculating about womens weight can go to hell. Is she too fat? Too skinny? She’s got cellulite??? BURN HERRRRRRR!!! No. Stop buying and reading crap judgements of other women, its bad for the soul.
TELL YOURSELF YOU ARE AWESOME – you might feel stupid at first, but positive affirmations are a great way to start to think about the good things about yourself. Say it out loud and say it proudly. Remember that your body is listening to the words you say, so make them nice ones.
ACCEPT YOURSELF – I know this is easier said than done, but being accepting of yourself is the start of all things good. Last year I realised I had been on a diet for 12 years and it depressed the hell out of me, for 12 years of being on a diet is 12 years of telling myself I wasn’t good enough. I know I am overweight and I am actually losing weight right now for surgery, but in accepting that my body is beautiful just the way it is, weight loss becomes so much less of a big deal and therefore it becomes a little easier to lose the weight as I just don’t think it is the be all and end all.
Accepting how your amazing body is made will make you feel better. That fold on your side is a beautiful and delicious imperfection that makes you unique, those wrinkles show your path through life, your scars are like the hieroglyphs of your story. Learn to accept these things and learn to love them.
READ THIS QUOTE – “You are not fat.You have fat. You also have fingernails, but you aren’t fingernails”
GIVE AND ACCEPT COMPLIMENTS – Make a point of telling people when you think they look good, or you like their clothes, hair, perfume, anything. And be accepting of compliments, I used to deny compliments all the time… “I love your dress!” “Really? This was from Primark and Im wearing spanx to fit it it!” Nowadays I make a point of holding those denials back and saying “Thank you, thats really kind!”
GET OUT AND GET MOVING – Exercise really does help mood, getting out walking and breathe in that fresh air. When I am feeling crap, I know the best thing for me is to grab the dogs lead, put on a big coat and get out walking. It clears my mind, gives me perspective and gives me time alone. I don’t always feel like it and sometimes have to force myself to do it, but I always ALWAYS feel better afterwards.
PERFECTION IS THE ENEMY OF GOOD – Perfection is unattainable, insisting on perfection often results in no improvement at all. Accept that humans are all imperfect, and that is what makes us unique and beautiful.
USE THE FOUR QUESTIONS – If you have a bad thought about yourself or your body, use the four questions of Byron Katie. There is a Judge Your Body worksheet, fill it in and then use the four questions.
“In its most basic form, The Work consists of four questions and turnarounds. For example, your statement might be “[Name] doesn’t listen to me.” Find someone in your life about whom you have had that thought. Then take that statement and put it up against the four questions and turnarounds of The Work.
Is it true? (Yes or no. If no, move to 3.)
Can you absolutely know that it’s true? (Yes or no.)
How do you react, what happens, when you believe that thought?
Who would you be without the thought?
Turn the thought around. Then find at least three specific, genuine examples of how each turnaround is true for you in this situation.”
It is about re thinking the way we automatically think things through habit and creating new thought processes.
THINK ABOUT THE PEOPLE YOU THINK ARE BEAUTIFUL – and realise that beauty is about so much more that how we look externally. Beauty is about kindness, love, wonder. Beauty is different all over the world, the very narrow western ideal of beauty in magazines is not true beauty.
RECOGNISE WHEN YOU NEED HELP AND ASK FOR IT – Sometimes negative feelings are more than feeling a bit down, if bad thoughts are something that affects your life daily then perhaps it is time to ask for help. Whether that is in speaking to your partner, family or friends or seeing a therapist or taking medication. Your best port of call is your GP. There is no shame in asking for help, it does not signify weakness. Recognising when you need help shows strength and courage. If you need it, ask for help.
Love Sam xxx
I am struggling to write this post. I just don’t seem to be able to find the words, which is an odd feeling for a loud mouth like me. I am due to have my pouch surgery in the next 5 weeks though I don’t have a date yet, and Im terrified.
I was scared before the last surgery but I was so ill that I knew I had little option but to have my bowel removed, but this surgery is different. I am making the choice to have this one, I could choose to keep my ileostomy forever and the idea is tempting. Now I am used to the bag, it causes few problems day to day, my hernia is a problem but that could be fixed and I could keep my bag.
But I am choosing to go for the pouch surgery to give myself an opportunity to have a more normal digestive system. The surgery means that my small intestine will be formed into a pouch and connected back to my rectum so I will no longer have a bag and will go to the toilet ‘normally’.
I say ‘normally’ but it will never be back to normal again. The pouch will be a lot smaller than a colon and so can’t hold as much, so I’ll be going to the toilet 5-10 times a day. Also the colon takes a lot of the liquid out of food which is why normal poos are reasonably solid, as I don’t have a colon, my poo will be liquid all the time. The colon also neutralises a lot of the stomach acid from our food, with my bag if I get the poo on my skin it can burn and make it really sore. I will have this same issue with my bum when I have the pouch getting the dreaded “butt burn”.
The surgery itself is a long one, 6-7 hours I have heard and then Im having the hernia repair as well and so I am really nervous about the actual surgery and being under anaesthetic for all that time. I have huge fears that something will go wrong and I won’t wake up.
The recovery is meant to be very difficult. Ill have at least ten days in hospital as I am having the one step pouch surgery which means I won’t be allowed solid food for 10 days and all liquid has to be measured in and out…
I haven’t used my bum muscles for over 6 months now and so that combined with the new pouch and my intestines being forced to perform a job they were never meant to do means there is a good chance of incontinence in the first few months. I am embarrassed to talk about this but this blog is meant to be about honesty I suppose. There is a chance Ill have to wear some kind of sanitary device at night to keep clean. Im devastated about this possibility. I literally feel sick at the thought of it. As I write this I am unsure whether I can hit publish as Im so upset about it.
Full recovery can take 12 -18 months, this is the length of time it can take for the pouch to be at full working order. It is going to be a long hard slog, I am trying to prepare friends and family for the difficulty of my recovery as I feel that people are expecting me to bounce back from this surgery as I did with my bag but the fact is that this recovery is going to take longer and affect me a lot more.
I feel quite a lot of pressure actually. Pressure of others expectations, which I know is daft and what will be will be, but I do worry that people are going to be shocked at how tough this op is to get over both physically and mentally.
Im scared. Terrified to be honest. Im scared that I won’t be able to cope, that Im going to be house ridden for months and months. Im scared I won’t be able to deal with it emotionally and mentally as well as physically. Im quite good at being tough, but Im not so good when I feel out of control. Im worried I am making a mistake, should I just keep my bag forever? Logically I know that this is what I want to do, I know that if the pouch recovery goes terribly wrong that I will be able to go back to a stoma and bag, but if I choose to keep the bag now there is no going back as the removed everything in the rectum and anus and sew it all up, so I want to at least attempt to live with a pouch.
Timm is, as ever, being amazing. He listens to all of my worries and we talk through everything, he tells me he will be there every step of the way. I suggested we sleep separately whilst I recover and he has just plain refused, which I am secretly pleased about. I just felt that I should give him the option of sleeping away from me during the first tough months but he says we will always share our bed no matter what. He talks with me about coping strategies and if all else fails, he makes terrifically sick jokes that make me laugh. A lot.
So there it is, this is how Im feeling right now. Shaky, emotional, frightened yet oddly looking forward to the surgery just being over and done with. I will, of course, be blogging as much as I can through my treatment. Please keep commenting, emailing, calling, texting and messaging me. Your support means the world and I feel properly blessed to be able to share my journey with you all.
Much love
Sam xx
I have had a couple of pre op dates through and we are definitely working towards my pouch surgery being in April. On 26th March I have to go in for a test of the muscles in my arse (nice!) and I have my pre op date for 9th April (Happy birthday Timm!)
The first test is called Anorectal Manotmetry, it is a test used to assess how well the muscles and nerves in and around your rectum are working, so that doctors know they are strong enough to deal with the pouch surgery. I will also have an ultrasound.
Image from Colorectal Surgeons Sydney
The following information is from the NHS website.
“The test uses a device that looks like a small thermometer with a balloon attached to the end. This is inserted into your rectum and the balloon is inflated. It may feel unusual, but it is not uncomfortable or painful.
A machine is attached to the device, which measures pressure readings taken from the balloon.
During the test you will be asked to squeeze, relax and push your rectum muscles at certain times. You may also be asked to push the balloon out of your rectum in the same way that you push out a stool. The information is sent to the pressure-measuring machine, and gives an idea of how well your muscles are working.
The balloon can also be inflated to different sizes to determine when your rectum feels full. If the balloon is inflated to a relatively large size but you do not feel any sensation of fullness, it may mean there are problems with the nerves in your rectum.”
I am not looking forward to this test as you can imagine, but after ten years of Ulcerative Colitis I have had so many tests and doctors looking in my butt that little embarrasses me any more!
The next appointment is for my pre operative assessment where they go through consent and make sure Im informed, do blood tests and any other tests that need doing. Ill be screened for MRSA and they will just go through the information I need to know about when to go nil by mouth, when and where to come in to hospital etc. I am not sure what the time between pre op and surgery actually is, I had a google and some people say its days before and others say it could be a month or more. But my surgeon has said my op will be in April so we’ll just have to see.
And so that is where I am up to, everything is being booked and we are steaming ahead. Ill most probably have a pouch in the next month and to be honest I am terrified. But that is for another post as I can’t get those words out right now.
Sam xx
As you may know I am slightly obsessed with Ru Paul’s Drag Race, it’s like a drag version of America’s Next Top Model, totes trashy but amazingly addictive. As I sit watching a screen full of men dressed as women it got me thinking about the qualities in women that these queens imitate.
I think drag queens are absolute artists, from the make up and hair, to the outfits, performance and dance, you can see the hours of dedication put into their creativity and I LOVE it. Its like watching a theatre piece. Many imitate celebrities, but a lot talk about mimicking the strong women around them, mothers, sisters, friends, aunties. They imitate them in an exaggerated way, magnifying the qualities that they love.
Watching these beautiful queens act in such an open, daring, funny, extravagant way, you easily forget that they are men dressed in womens clothes and just enjoy watching hilarious, wicked and wild performers.
So I have been thinking about why women should be a little more drag queen, Im a big believer in faking it till you make it, as in acting like the personality you wish you had until you eventually stop faking it and start feeling it. What if we all performed as the type of woman we adore? Despite my outward appearance, I am sometimes quite shy and I get really anxious when I have to speak to new people but it is something I dislike about myself and so I fake being a chatty and confident person. I have faked it for so long that sometimes the new behaviour of being gregarious just comes out as a habit and without trying to fake it, I AM that confident person.
Watching drag queens is so interesting as they perform as how they ‘see’ women rather than how most women actually are and man, that looks likes fun! Perhaps next time we feel shite about ourselves we need to put on a floor length glittery gown, massive lashes and act like a giddy diva? Well, maybe not. But maybe we could all do with seeking out a little inner drag queen to boost our confidence from time to time, acting like a woman in our lives who inspires us.
Ru Paul has this saying…
How true is that? I KNOW it sounds cliche but without self confidence and love for ourself, it is a real struggle to love someone else and to be loved. We need to spend more time working on ourselves, on loving ourselves, respecting ourselves and making time for number one. We need to make our own happiness a priority rather than putting ourselves last in the queue.
You know that saying “If momma aint happy, nobody happy”? That is because as women and mothers we tend to be the key pin in families (dads are of course as important, please don’t think Im dissing the baby daddies). If we are unhappy it affects everyone in the family.
So this week, make time for you, do something that makes you happy and if you are really struggling perhaps try being just a little more drag queen.
Sam xxx