First ever vlog! How to change your ileostomy bag video
I have been threatening to do this video for months and never got round to it, so here it is. My first ever vlog, a how to video on how to change your ileostomy bag.
Enjoy!
Love Sam xx
I have been threatening to do this video for months and never got round to it, so here it is. My first ever vlog, a how to video on how to change your ileostomy bag.
Enjoy!
Love Sam xx
Eight months ago today I had surgery to remove the whole of my large intestine.
It’s been a busy and at times stressful 8 months but throughout it all I remind myself that life with an ileostomy bag is SO MUCH EASIER than life with Ulcerative Colitis!
There have been good times and bad in the past few months, I have traveled to Vietnam and Australia and I have faced difficulties with developing a hernia and making the decision to go ahead with pouch surgery.
They tell you it can help to deal with the process of having a stoma to name it, my sister came up with the name Barack Ostoma which I think is brilliant, because my stoma, like me, is no regular boring one, it is an all singing, all dancing bad ass!!
In 11 days I will have my pouch surgery and wave goodbye to Barack, and though this feels like the right decision for me I will be ever grateful to these 8 months of living with an ileostomy bag, not only has it allowed me to come off all the many meds I was taking, but it has rid me of all the awful symptoms of Ulcerative Colitis that I had suffered with for ten years. 
It did something else though, it made me reassess the things that were important to me, the way I see myself and the way I want to live my life. It made me a more confident person and it gave me the opportunity to share my story with all you dear readers, to make a difference to people with IBD, to raise awareness in the general public and to push myself into making decisions to speak in public and put myself out there as a mouthpiece for those suffering and living with chronic diseases.
It has made me a better person.
So on my 8 month stomaversary, I raise a glass to everyone living with a stoma, dealing with IBD or anyone living with chronic illness. You all kick arse, you are braver than you think, stronger than you can imagine and are so bad ass.
Sam xxxxxx
This year I made a decision to stop buying ‘women’s’ magazines and I feel so much happier for doing it. Here’s why…
Im not a massive magazine buyer, I don’t buy them regularly but now and then I will pick up a few and every time I did, I ended up either feeling rubbish about myself or pissed off at the world we live in. When I did buy them I would flick through this dross and seethe at the three little pigs debate on women, this celebrity is too fat, this celebrity is too thin, this celebrity is jusssssssst right.
Look at these ‘shocking’ bodies they scream, let’s join together and shame these women, for how dare they go out in public with any sight of wobbly flesh, a rounded stomach or stretch marks. Lose weight you disgusting creatures. But hang on, don’t lose too much weight, because look over here at these women, they must be anorexic or on drugs!! Look at the vile bitch whose ribs we can see…
Why the fuck was I buying these things? I honestly can’t answer that, perhaps it was habit or boredom. I can tell you I just don’t enjoy reading this shit. I don’t care how big a Kardashian’s arse is, I don’t want to see that Madonna is too thin or Chantelle is too fat. Seeing these women, big or small just made me feel angry. It didn’t make me feel good about myself seeing someone bigger than me though it did at times make me feel shit to see a thin celeb being mocked for gaining a few pounds. When they are publicly mocking a woman for being fat and she weighs 2 stone less than you it does make to question how society sees you.
These magazines are not interesting, they’re not journalism and they aren’t even amusing. They are shite and ladies, we need to stop buying into this crap. Since stopping buying any magazine that’s purpose is to shame women I can honestly say I feel miles better and I have more money in my pocket!
When I look at the magazines my husband buys, there are no images of a celebrity male with a step by step crucifixion of their looks, National Geographic doesn’t fat shame scientists or tell us that Obama has lost/gained a stone. I know there are magazines such as Mens Fitness that feature toned and muscly men but that is more about health and exercise, it isn’t about how big Brad Pitt’s arse is.
So why do women feel the need to buy magazines that demean and shame other women. I’d like to think that most of us don’t judge our peers by the size of the bodies so why do we enjoy seeing celebrities judged so harshly? Is it car crash media? Or something more?
I can’t answer that question but what I can say is that buying magazines like Now and Heat does NOTHING good for your self esteem, ask yourself, do you really want to be funding the ridiculous judgement of celebrities, do you want to be part of a society that treats people so poorly and pushes an unrealistic and unattainable perfect body image. Do you want your daughters, nieces and young women to be surrounded by images and harsh words, cementing the idea that if you aren’t perfect, you are fair game to me mocked and bullied?
I dont. And so I took a stand, its only a tiny stand but if we all stopped buying into this crap then perhaps the editors of these magazines will take a look at themselves… Magazines circulation is dropping year on year, the rise of the internet and smart phones mean that most people can get the celeb gossip fixes at the touch of a button. So think about your hard earned cash next time your hand wanders thoughtlessly over to the shame section in the newsagents. What could you be reading in that time that would actually teach you something or just make you feel good?
I didn’t want to bring that sort of message into my home where my kids could see it, especially my 11 year old daughter. Id never tell her that Susie is so fat that she should NEVER wear a bikini, or that Jane is so skinny, she is definitely starving herself and seeing her bony ribs makes me sick. I wouldn’t allow people around her to negatively affect her self esteem by telling her that unless she weighs the exact right weight, has the perfect sized tits and an arse that can’t be too small or too big that she is not good enough. So why would I allow these magazines to be around her?
I found a magazine last year called Psychologies, now I have seen this before but due to the title I assumed it was a health mag or maybe a professional magazine, it isn’t! And despite the terrible name it is actually a really good magazine (so much so that I just bought myself a subscription) It has womens lifestyle articles, fashion, home, work, family etc but there is no celeb shaming, no telling you how to lose 300lb in 20 minutes by juicing your own shoes or any such crap. It has really interesting and fun pieces that make you feel good. Fancy that!
I get the desire for celeb gossip, I really do. I don’t know WHY I want to know what Angelina and Brad’s home looks like but now and then I do. Im not sure why I care if Richard and Judy fell out but occasionally I like that knowledge. My (VERY) guilty pleasure is the occasional glance down the Daily Mail website seeing who fell out with who and which celeb got drunk at which party.
But seriously put down the crap mag that’s sole purpose is to bully, mock and shame other women. Make a stand and think about your fellow woman.
I talk about self esteem a lot these days and it is because facing surgery, scars and having to wear an ileostomy bag 24 hours a day makes to reassess how you look at your body. I could have gone the other way and felt saddened or ashamed of my body, but instead I just gained a massive respect for it. My body confidence is higher than it has ever been! I am so proud of my strong body, the battering it has taken, my scars are like battle wounds, they are a huge part of me and I love them. My bag is there, its on show and I could resent it and despise it, but it wouldn’t change the fact that it is there. So I have learnt to accept it, and I have used it as a tool to teach other women that no matter what we go through, we are strong and we are beautiful.
Beauty comes in so many different packages, my package has extra bits, its a bit crumpled and torn but it is so filled with joy, happiness, fun, kindness and laughter that it is JUST as beautiful as anyone else’s.
The message in these mags is if you aren’t perfect then it is perfectly acceptable to mock you. This isn’t true, it isn’t how life is and reading that shit made me feel bad. Reading that shit when I was an impressionable teenager may have had a really terrible affect on me and so I will protect my daughter from it for as long as possible, life isn’t about Mean Girls judging one another, its about love and kindness, fun and laughter, experience and being brave enough to love yourself and pave your own way, being proud of the person you are, not your dress size, and knowing that true beauty is so far away from the measurement of your waist.
And that, dear reader is why I have stopped buying ‘women’s’ magazines.
Love Sam x
My pouch surgery is booked in for the 14th May and so I thought Id do a post about what it is and how Im feeling about it.
I know that the pouch surgery is definitely something that I want to at least try, its a big surgery especially as Im having it in one step but it is something that I think is worth me going for. The alternative is to have a permanent ileostomy which still means having another operation to remove my rectum and sew up my butt…
There can be complications with the surgery with leaks, fistulas and pouchitis (an infection in the pouch), there can be problems with incontinence and the recovery is a long process. But the positives will be that I no longer have a stoma and no longer will need to wear an ileostomy bag. I will go to the toilet as ‘normal’ and my hernia will be fixed.
I feel informed and happy with my decision but I am still so frightened.
Its a long surgery and I am scared I just won’t wake up. I know how silly this is, the doctors and anaesthetists are professional and caring and will do everything they can to look after me, but I can’t shake this worry that there will be problems and I just won’t wake up. Maybe its because this surgery is planned whereas the last one was an emergency and so I have an option to not go for this. Or maybe its just that the last year has made me think about my own mortality.
So let me explain a little about the surgery, in my last operation they removed my large intestine and made my stoma from the end of my small intestine.
So the first image here is a normal digestive system, the second is how I am and shows a digestive system without the colon (or large intestine) with an ileostomy.
During the pouch surgery, doctors will remove my ileostomy and form a pouch out of the end part of my small intestine.
This image show the pouch formed from the small intestine and that it is then connected to the rectum and anus muscles so food has a clear path from mouth to bum!
Most times this surgery is done in two parts, the pouch is formed and connected but a loop of small intestine is brought out of the stomach to make another stoma which diverts food from the pouch and bum whilst everything heals. Then 2-3 months later the loop is repaired and everything is connected.
I am having the surgery in one go, so they are forming the pouch and connecting everything straight away, I will be unable to eat food for around 10 days to give the pouch chance to heal and then will have to be very careful for a few months with what I eat and drink.
There are more risks in doing it this way, the main risk being that the pouch doesn’t hold and will leak. A leak can be dangerous and would require more surgery and a longer hospital stay. But my surgeon is confident that I am strong enough to deal with the surgery and that it is the best choice for me.
Recovery wise, there is a high chance of incontinence right after the op, it will be quite painful as its open surgery so I have the wounds inside and out to deal with, they are good at dealing with pain relief though and so Ill be on morphine and an epidural for a while. It has been 8 months since I have used the muscles in my butt and so it takes a good while to re learn how to use them again, I also have to learn how to go to the toilet all over again. The pouch is using parts of the body that were never meant to do this new job and so it is a long and difficult journey to be back to ‘normal’.
The worst case scenario (apart from, you know, death) is that the pouch doesn’t work and there are problems, if this was the case it is still possible to go back to having another ileostomy. This isn’t ideal but it is good to know that its something I can go back to and I could deal with that.
I am NERVOUS! Im scared of the pain, Im scared of going back to running to the loo again, Im scared that the pouch recovery will be like having colitis again and having to stay close to the toilet at all times.
I am really sad at the thought of going back to feeling so weak, poorly and being unable to do things for myself. The last surgery was a good 6 weeks of bed rest, feeling so exhausted and allowing my body to heal. This surgery will be even longer and that worries me.
BUT I am confident its the right move and so in two weeks time I will be officially no longer an ostomate and will be a pouchee!
Wish me luck, I will be updating the blog as much as I can running up to the op and will ask Timm to update once I have had the surgery.
Love Sam xxx
I finally have my surgery date! On the 14th May I will be going in for pouch surgery and parastomal hernia repair!
Im terrified but happy that it is booked. Im feeling extremely nervous about the operation and recovery but I am sure that it is the right thing for me to do.
So I have two more weeks with Barack Ostoma before I get my new pouch…
I will blog more this week about how Im feeling about everything, thanks so much for all your kind words and messages.
Love Sam xxx
Last week I had some time away in Spain, the stress of dealing with my stoma, the hernia and the upcoming surgery was just getting too much. I am a positive person but it was all getting me down, I was really weepy and just felt so down and sad. After hearing that my surgery was being postponed yet again I just had a bit of a breakdown, I felt so out of control and things just seemed too hard.
So my lovely husband suggested I have some time away, I looked at flights and then spoke to my wonderful Aunty and Uncle who live in Spain who very ,very kindly said I could spend a week with them.
I put aside the guilt that all mums feel as I was leaving my kids for a week, but I knew they were home safe and happy with their dad and so I packed a bag and headed off for a week in the sun.
My cousins were over with some of their friends visiting their mum and dad and so I had a lovely family break and really felt looked after. It was so nice to not have to look after other people for a week and to just have time looking after myself. I had such a fantastic, relaxing time.
I had a few times where I was really uncomfortable with my hernia but the joy of being away with no kids was that I could go and lie down and rest with no guilt at all! I also had a few stomach pains and a little dehydration but nothing that rest, plenty of fluids, a few painkillers and diarolyte couldn’t help.
I have come home with a new sense of positivity, feeling so much better and ready to face the next few tough months. My stress levels have dropped and I just feel stronger mentally and though Im still frightened about the surgery and recovery, a week away from real life has made everything seem a little easier.
Here are a few photos from my week away.
So this explains my absence for the last week, thanks so much for all your kind messages and emails.
Love Sam xxx
Today I spoke to the consultants secretary again, she says that he needs to see me regarding the test results from the anorectal physiology test and my surgery now won’t be till May.
There are two dates, one the 14th and one the 28th May. Either way it sucks big time that it will be another 4-6 weeks till my pouch surgery.
I’m gutted. I’m crying all the time, the stress has really got to me. Worse than I thought it would. I think I’m a quite tough person but right now I feel so broken. The crushing disappointment of working myself up to be able to deal with major surgery and then being let down again and again is heart wrenching and it’s all just got a bit too much.
Everything is just getting to me, I feel fed up and pissed off with the world. I’m sick of crying, sick of being a whingy moan bag.
So I’m running away from home.
Yes, really.
Ok well not running because you know, hernia. And the husband and kids know about it.
I booked (some ridiculously cheap) flights to Spain and I’m off to see my Aunty and Uncle who live in Malaga, no kids, no work, no thinking of hospitals or surgery.
I need some time and space for myself and Timm suggested I had a bit of time to just destress, chill out and have space and time to relax and think about myself. Man, he is awesome!
So I’m off on Friday for a week in the sun!
I know running away from your problems doesn’t work but I’m thinking a brief time out of real life shit is much in order.
You can keep up with me on Facebook (So Bad Ass) twitter (@so_bad_ass) and Instagram (Sam Cleasby)
Love Sam xxx >
I got a call today from my consultants secretary saying that the preliminary date of the 30th April is being postponed.
Mr Brown wants to see me to discuss some matters before the surgery and so everything is on hold right now and I’m not sure why.
I asked if it were anything to do with my pre op but she said that all came back fine. I’m waiting for her to call again to let me know an appointment date to see the consultant and hopefully a little more about what the problem is.
Today sucks ass.
I’m feeling totally broken and beaten down by it all. My hernia is uncomfortable every day, I’m exhausted and feeling crap. I just really want the operation over and done with so I can start recovering.
When I feel like shit, there is one person who makes it all better, Timm, my husband. And so this afternoon we snuck out for an hour to walk the dog and talked through how we’re feeling. We acted like teenagers and even had a couple of ciders in a field!
I came across this picture on Instagram by nurse_student, now whether she thought it cute or funny I do not know but I am fuming.
Id like to say that I responded with a calm, witty devastating put down. I can’t. I said “Wow. I hope you are never my nurse, because if you acted like you wanted to throw up and took the piss whilst doing your fucking job, I would kick your ass. You give nurses a bad name.”
Id like to explain how it felt when I saw this ‘joke’, I know that nurses have to deal with a lot and sometimes having a sense of humour is the only way to get through a shift, but nurses are supposed to be carers, people who are patient and sensitive. This ‘joke’ made me cry.
Let me take you back seven months. I had been through ten years of illness, pain, humiliation, meds and treatments and then just come out of major surgery to remove the whole of my fucking bowel. I was hooked up to an epidural and had a catheter, I was dosed up on all manner of pain relief and had zero control over my body. I was having to deal with the fact I had a stoma emotionally and physically. Having to learn a new set of skills to be able to change my bag and clean myself as well as ‘mourning’ the loss of my bowel and learning to accept my new body.
It was the hardest time of my life. I have never felt so overwhelmed, exhausted, terrified and alone in my whole life. I was entirely dependent on those around me and I felt like shit.
Then I had my first leak. I was covered in shit from my chest to my hips. It was everywhere and I was mortified, I couldn’t stop crying and I was so embarrassed. I rang the bell and a nurse came. She looked at me and said “Oh dear, you poor thing! Come on lets get you sorted.”
She cleaned my skin and dealt with this mess like she was washing the pots. She smiled and chatted and batted away my embarrassed apologies and thanks. She made this horrific situation a million times better. She spoke of how awful she knew I felt but how each day life was going to get easier, she was kind, caring, sensitive and just amazing.
The second big blow out leak I wasn’t so lucky. A nurse came and she tutted. She cleaned me up but barely spoke and made me feel like I was an inconvenience to her. When she left I cried myself to sleep. I felt like a baby. I couldn’t even clean myself, it was so heart achingly depressing.
The third time I got a nurse who just put a cardboard bowl of water on the table in front of me and said I needed to learn to do it alone. I couldn’t sit up, let alone stand. I had to clean myself up the best I could including washing shit out of the 7 inch stapled would on my stomach.
These nurses, like the woman who posted this ‘joke’ should be ashamed of themselves. You know what? We all know that dealing with another persons shit isn’t nice, but when you become a fucking nurse then you have to suck it up buttercup! If you don’t like it, if it makes you gag and makes you want to share ‘hilarious’ memes on the internet, then you are IN THE WRONG JOB.
So today Im angry. Im not weak and sick in a hospital bed right now, I have some energy and will stand up for myself and other people with an ostomy when I see these insensitive, vile jokes.
I just hope that people will read this and understand that what may be a silly joke to you, can devastate a person reading it. It may seem funny and you may tell people to lighten up about it, but put yourself in the shoes of the person you are mocking. Or imagine that person is your mum or child and see how funny it is then.
Sam xxxx
I had my pre op appointment at the hospital this morning, I was nervous about what they would do but it was a really simple process of a few different health checks.
I had bloods taken, they are doing FBC, checking markers etc but also need to do a check on blood type as apparently if you have had a blood transfusion your antibodies can be very different.
They did swabs for MRSA and gave me a pack of swabs to do it again at home before the op. This is because Im classed as a ‘regular visitor’ to the hospital… No shit Sherlock!!
They took my height and weight measurements, Im pleased to say I have lost just over a stone in the past three months. Im aiming to try and lose a little more by the surgery date as the consultant says higher weight increases the risk of complications.
They then just asked A LOT of questions about my health and talked through my stay in hospital.
They also talked to me about having a high protein diet which apparently increases recovery rates and gave me these pre op drinks, it is a clear, lemon-flavoured, carbohydrate drink given as part of treatment before surgery. “Undergoing surgery will put stress on the body. Research has shown having a carbohydrate drink reduces stress on the body. It has also been shown that it may reduce loss of muscle following surgery, which aids faster rehabilitation, and shortens hospital stay.” Clever stuff!
My appointment took about an hour and a half and everyone was very nice, but had no idea on dates.
So I called my consultant’s secretary who let me know that a preliminary date of 30th April had been put in for me, they need to check all my pre op tests are ok and will be confirming it asap.
So I could have just 3 weeks left of being an ostomate!!!
Ill update as soon as there is any more news.
In the meantime, can I just take this time to say a very Happy Birthday to my most favourite bloke in the world, my awesome husband Timm. Im sorry bubs that you had to spend your birthday morning in hospital with me!! We spent the rest of the day shopping, having lunch and then had a walk with the kids to our friends house for a gorgeous birthday tea.
Timm is just amazing, he takes everything to do with my illness and surgeries in his stride and just makes life better. He is my absolute rock and I couldn’t live without him.
Happy Birthday Timm xxxx