World IBD day 2018

It’s like my Christmas today, a day devoted to talking about IBD! For more information,head over to Crohns and Colitis UK. 

On World IBD day, here’s my IBD story…

In 2003, I began to bleed heavily from my butt, I was having stomach cramps, diarrhoea and oh so much blood! I went to see my GP who told me that it must be piles because I’d recently had my second baby.

Embarrassed for wasting their time, I left shame faced, the bleeding continued, it was so heavy some days that I’d wear a pad in my pants. I was going to the toilet 10-20 times a day and was pooping blood and mucus. I began to lose control of my bowel.

One day, I woke in a pool of blood. I was convinced I had bowel cancer and thought I was dying! I went to A&E and was seen by a pissed off doctor who didn’t even examine me, simply told me to see my GP.

I left again, feeling that I’d wasted everyone’s time and perhaps I was over reacting? But I was in so much pain and spent the rest of the day on the toilet. The next day I collapsed at home, an ambulance was called and I was rushed into hospital.

I was dehydrated, hugely anaemic and for the first time, I was listened to. They tested my poo and when the results came back, they did a colonoscopy and for the first time in my life, I heard the words Ulcerative Colitis.

Sam Cleasby ostomy bag ibd chronic illness blogger

Over the next 9 years, my Colitis was pretty much controlled by medication, I had times of flare ups and times of remission. The pregnancy and birth of my third child threw my body into a panic but I was looked after and though times were tough sometimes, there were lots of good times too.

And then at the start of 2013, I began with a flare up, but this time the medication just wasn’t working. So I started on steroids, I got fat, couldn’t sleep, sweated like a pig and had crazy mood swings but it got the flare up under control! Hooray!

So I began to taper down off these meds. And my body freaked out! The flare up returned with a vengeance and I had to up the steroids again. This went on for 9 months till I was at the point of going to the toilet 30 times a day. I was hospitalised and things were really bad.

Thats when the decision was made to go for surgery, and in September 2013 I had my first surgery to remove my colon and create an ileostomy.

ulcerative colitis surgery

Five years on and I’m currently awaiting surgery number 6…

Its been a rough old ride, but one positive thing has been this blog where I’ve shared my journey from the start.

When I started so bad ass, I thought it would be for just me, I thought maybe a few friends or family members would read it. Five years on, I’m about to hit 3 MILLION views and I’ve been on TV, radio and done talks all over the world!

I have been honoured to speak to thousands of people with IBD and offer them support, an ear and a voice and I’m so proud of everything that So Bad Ass has become.

Sam Cleasby ostomy bag ibd chronic illness blogger

It is an absolute honour to be a blogger and to have the opportunity to raise awareness and break the taboos around IBD. I’m massively proud of the things I’ve achieved but the biggest thing is knowing I’ve helped others.

I get messages and emails every week for hundreds of people and I do my best to reply to every single person.

IBD has no cure, it’s thought of as an embarrassing illness as it’s to do with poo and bums, but you know, we all poop! And our bodies shouldn’t bring us shame!

People living with IBD are heroes, every day they’re battling things most people will never understand. And so this World IBD day, I just want to celebrate every person living with IBD.

You are awesome, you are wonderful, you are so badass!!!!

 

Sam xx

Hospital update *spoiler* it’s not good news

I had my 6 week post op check up today with Mr Brown, Timm took the morning off work to come with me as I had a sneaking suspicion that it wasn’t going to be good news.

My stoma and stomach is still very swollen and with exertion it really pops out and my stoma disappears inside my body. I have New deeper convex bags which are really helping with the leaks but it’s still not great.

So Mr Brown said that the op didn’t go as planned as he was thinking it was going to be a really simple incisional hernia repair but when he opened me up, the hernia was originating from the stoma and had spread up to the incision site. He fixed it as much as possible but unfortunately things haven’t solved the issues.

And so I’m going to have to have another operation.

I’m absolutely devastated. I really thought the surgery 6 weeks ago was going to be my final one and now I’m heartbroken at the thought of more.

The options are to have a parastomal hernia repair, this is the easiest op but carries a 50% chance of reoccurrence, or we can totally resite my stoma on the other side, which is a much bigger op but only has a 10% chance of reoccurrence.

I decided I need some time to think about it, we have a big holiday planned for August this year and so I don’t want to do anything before then. So I’m going back to see him in July and we’ll look at scheduling it then. We all think that the stoma resiting, though a scarier op is probably the better option but I’ll give it some real thought and research over the next few months.

Im really tearful now, I just can’t believe I’m going to have to have another surgery. I can’t believe my husband and kids are going to go through it all again. I’m worried about work, taking more time off for yet another surgery, and Timm’s business which is in the first stages of expansion and the effects my illness will have on us.

I know in the grand scheme of life, this is small fry. It’s an operation to fix a problem that isn’t life threatening. I know I’m lucky to have the health that I do have and so don’t want to be too ‘poor me’, but man, I’m gutted.

I had a big cry in the hospital car park and then another big cry in the car. Then an even bigger, snotty wail at home.

It’s not bloody fair! I’ve done my share of hospitals, I want some time off now!!!

Work have been great, I spoke to my manager when I came out of hospital and he’s told me to take the rest of the day off. So I’m going to have a bath, take some meds and get in bed and read a book.

Im going to take today as a mardy day, wallow, eat pancakes, cry and feel sorry for myself.

Then tomorrow I’ll pull on my big girl pants and get on with it…

I read a quote recently, it said:

Life and death quote

And it made me realise you have to make the most of your time here.

Things are pretty shit with my family relations, but I have the best husband, wonderful children and some really loving and supportive family members.

I have THE best friends in the world, so many friends who are bloody brilliant. Especially our Caroline and Jim who are the best friends Timm and I could ever wish for, they’re always there for us and make us so happy.

I have a great job who are understanding and supportive with my illness, Timms business is thriving. I have a lovely home and an allotment which is my happy place.

So if I have to have another op, then I think I’ve got this. Maybe we’re only sent the shit we can handle, and maybe that shit sometimes teaches us we can handle more than we believe.

 

Love Sam xx

The Naked Podcast

Last year I got quite an odd phone call. Even for me this was a weird one!

It was a reporter I’ve worled with a few times for BBC Radio Sheffield asking if I’d be interested in coming on her new podcast to talk about body positivity. Of course I would!!! That’s right up my street!

”There’s just one thing though Sam… we are recording it naked.”

What??!!!

Jenny Eells and Kat Harbourne said they wanted to discuss the subject of nudity to find out why people are so prudish about their bodies and why many people, particularly women, aren’t more body confident.

So I thought what the hell! Let’s do this!!!

It was really nerve wracking! I turned up and we chatted for a few minutes about themes and then I took myself off into the bathroom to undress, even though I knew we’d all be naked, it seemed weird to strip in front of them!

I came out in a robe and they were wrapped in towels, we sat down and all took a deep breath… then dropped our covers!

At first it was very bizarre! You don’t quite know where to put your eyes and feel completely exposed and fairly terrified.

Yet after a few minutes, you kind of forget about it! There was no judgment, I didn’t feel that they were sizing me up at all, it was three women sat in the buff chatting. Odd but funnily comfortable.

I think that physical exposure really opens you up emotionally and over the course of an hour we talked about things that brought up a lot of deep down emotion. From my surgeries and scars, to sex, masturbation, how children feel about their bodies and so much more.

Honestly, it was quite a terrifying step to take, but once we started, it was so cathartic and I left on cloud nine!

You can read a bit more about the podcast here.

The naked podcast Sam cleaaby

 

You can follow The Naked Podcast on Twitter @TheNakedPodcast and listen on iplayer!

I hope you enjoy it!!

Love Sam xx

Going grey

I’m ever so grey. I’ve dyed my hair pretty much every colour under the sun in my time but I’m tiring of it. It’s such a ball ache having to do my roots every 4-6 weeks and so over the past few weeks I’ve been thinking about stopping the dye.

But how? Did I go for the expensive dying root of trying to slowly tame my hair into growing out with tinctures and dyes and blending?

Well as with all my surgeries and when I’ve not been well, my hair is in bad condition. It is falling out by the handful and feels like crap and so I made the decision to go short and cut out the dyed hair.

I considered lots of hair styles before making the decision to face the shave.

I have had shaved hair a couple of times in my life and when I met my husband Timm almost 20 years ago, I had a number 1.

And so here I am.

Grey hair going grey girls with shaved hair

 

There are so many pressures on women to look a certain way and especially to look ‘young’ but this is me! I’m 36 and really grey and I want to embrace it!

I feel amazing. I feel like me. I feel strong and womanly and so bad ass!!!

Its time for me to embrace the grey, embrace the natural and kick some ass!

Love Sam xx

 

My name is Sam and I’m an online shoppaholic

I have a confession to make. I’m thoroughly addicted to online shopping.

I realised this when my middle child told me their aims in life were to have a job that earns lots of money so they can sit in bed and order lots of stuff off Amazon… eek!!!

Don’t get me wrong, I’m not bankrupting my family for my shopping, I’m actually a bit of a spend thrift and love a sale and a bargain. I rarely buy full price clothes, and I hunt out the cheapest deals going. But I just do it very often.

I’m on first name terms with our postman, the amazon delivery guys, the DHL folk and the UPS man. I’d say I get 3-10 parcels a week and I realise this is probably a bit naughty.

positive life quotes sheffield lifestyle blogger

I think it started when I got ill, when I wasn’t able to get out and about to the shops alone, I found the ease and accessibility of online shopping a real help to my life.

Whether I’m bed bound, in pain or have had 5 bag leaks that day, I can still buy anything I need. I can shop online whilst on the loo, naked and from bed! I think I’d get kicked out of our shopping centre if I turned up in my birthday suit with just an ostomy bag and a smile!

Amazon is my worst, we have amazon prime which gives free next day delivery and so I’m forever clicking a few times and buying bits for around the house or things I’ve noticed we are lacking.

But im also bad for other stores too. If I get an email telling me that there’s a sale on, I’m like a pig in mud! Woop! Look, I just bought some boots on sale, a little plate in the shape of a llama and a wall shelf shaped like a rainbow that holds very little (all genuine purchases this year.)

I have a problem with sleeping, though I’m exhausted I can often sit awake till 3 or 4am and this is the witching hour… the time where my idle hands creep over to my phone and hit the shops, the time when I do my worst purchases! Sometimes I think I dreamt I bought things till they actually turn up in the post!!!

Now this isn’t a problem financially, as I said, I’m not spending huge amounts of money and I can afford everything I buy.

But it kind of surprised me to realise that this is me, I would never in a million years describe myself as a shopaholic. I see myself as someone who likes Home made things, I’m a gardener, a crafter, I sew and bake. I think of shopaholics as some sort of Made in Chelsea/Towie self obsessed consumer who is all about buying new things and whose worth is based on what products they buy. (I realise this sounds judgmental!!)

Thats just not who I see myself as, yet in making all these random purchases, I am not being my true self.

Online shopping is an absolute life line, especially for someone like myself who works full time, has a chronic illness and a busy life. But there’s a time and place and buying air drying hair rollers at 3am isn’t the place!

So I’m setting myself a challenge, I wil not buy anything online for the next month, I’ll also not buy things in store apart from our grocery shopping.

I have a house full of stuff and I don’t need most of the crap I buy and I thought this would be an interesting challenge for myself to see if I can change this habit that I’ve fallen into!

I’m already struggling! H&M just sent me an email about their mid season sale and without thinking I popped a dress and a pair of trousers in my basket before throwing my phone down in horror! (They were VERY pretty!)

I also admit a little prep time in March where I bought a couple of pressies for birthdays in April.

Anyway, wish me luck!

No buying April!

 

Sam xx

Chronic illness and kids – dealing with mum being ill

One of the biggest sources of my guilt and having IBD is my kids, I feel so sad that they have a poorly mum who they see in bed so often. They’ve visited me in hospital more times than is right for a child and they cope with it phenomenally.

Today I’m feeling pretty sad and I wanted to talk about my baby Thom. He’ll kill me for saying that as he’s a teenager now, but he’ll always be my baby.

I was diagnosed with ulcerative colitis before Thom was born and so all of his 13 years have been with a sick mum. He had dealt with this from conception as my IBD went into overdrive when I was pregnant with him.

Chronic illness parents and children

During my pregnancy, I spent months with diarrhoea, stomach pain and bleeding. As I should have been concentrating on growing his wonderful little body, I was dealing with my own illness. It felt as though my body was jealously fighting for my attention, there were times when I should have been revelling in his kicks and watching those little charts to see what fruit item he was the same size as this week, and instead I was hospitalised and having blood transfusions to keep my own body strong enough to just keep us both alive.

He was born 9 days late and weighed an amazing 11lb!! I like to think that was his first little ‘fuck you’ to IBD, that he was staking his claim saying ‘this is MY mummy and we aren’t letting you win!’

Chronic illness parents and children

Throughout his life, I’ve had 6 surgeries and many more hospital stays, there have been so many weeks where I haven’t been there for him and this breaks my heart.

He has learnt about my illness and is such a kind and understanding young man, every day he asks me if I need anything, can he do anything for me. He sees past my scars and ostomy bag, blind to any add ons and just sees me as mum.

Today I wanted to treat him, he’s on school holidays and as I work full time I’m never about during hols and so as Timm is at work and the other two kids are at school and college (different cities/different school holidays- why yes, that does make life a nightmare!!!) I thought I’d take him to the cinema. I still can’t drive, but we can get the train from our village straight to Meadowhall and I thought I’d be strong enough to try it.

Chronic illness parents and children

But my body had different ideas, I dressed and we got out of the house but then my bag started to leak. We’ve come home and I cleaned myself up but now I’m struggling. And so the trip is cancelled.

I feel so bad.

‘Im sorry Thom Thom, I just can’t manage it’ I said to him, knowing that he’s heard these words too many bloody times in his life.

He didnt complain. He didn’t sigh or roll his eyes.

He looked at me with love and said ‘mum, it doesn’t matter, go and lie down, I love you’

This boy of mine is a gem, he never complains, he never gets mad with me, he takes it all on board and smiles. He can adapt to any situation and knows that last minute changes of plan are just one of those things.

I love him so much and I feel so lucky to have such wonderful, kind and compassionate children.

Chronic illness parents and children

My illness brings a lot of stress into our lives, it brings my kids issues that I hate them having to deal with, but I also think that it has made them empathetic and deeply kind. They understand other people’s struggles and deal with it without drama or theatrics. They have a sense of humour and a sense of perspective way beyond their years.

And do though I often feel guilty when I can’t be like other mums, I also know that being the mum I am has brought positives to them that outweigh the negatives. And I’m a very lucky momma.

 

Sam xxx

Separating you as a patient from you as a person

This has been playing on my mind recently and I thought I’d get it down here to see what other people thought, how do you separate you as a patient from you as a person?

When you have a chronic illness, you spend a lot of time as a ‘patient’, from the endless doctor, nurse and hospital appointments to taking medication every day. When you have to consider your health on a daily basis it’s easy to feel like the you that is a patient has taken over the rest of your life.

I suppose I’ve been thinking about it as I’m recovering from an operation and I have been in full patient mode for a couple of weeks. I’ve been taking pain medication, sleeping and resting a lot and needed the care and support of family and friends much more than usual.

All my phone calls and visits have revolved around me, how I feel, how I’m recovering, if I need help. This has been so lovely and the thoughts, support and well wishes have been so heart warming. But it also temporarily changes your relationship with people.

So as I start to feel better and begin to step out of full time patient mode, it feels a little odd to be honest. Is it just me or has anyone else felt this?

Stomach bug and ostomy

My body has been in pain, I’m healing from the op and my husband has been my nurse during this time. He’s obviously seen me naked, but these times have been when he helps me in the bath, sits with me as I change dressings and my ostomy bag and when I’ve been in bed.

Then tonight as he leant over to hug me in bed, I felt myself freeze, I suddenly felt self conscious of my body when I thought about it in a normal way, though he’s seen me nude every day for 2 weeks, the idea of him looking at me with a husbands eyes rather than a nurse or caters eyes made me feel a bit embarrassed.

Its an odd feeling as I’m never usually conscious of my body, and this one tiny new scar has nothing on the other huge scars and my permanent ileostomy. I know he loves me however I look, but stepping out of patient me’s shoes back into every day me felt a little jarring.

I think it’s easy to forget who you are when you are always ill, but it is so important to take time to remember that your illness is just a small part of who you are, it doesn’t define you and shouldn’t be the biggest part of you.

I’d love to hear what you think about this, is it something that bothers you? Do you understand where I’m coming from? Let me know your experiences as I’m a nosy bat and I’d like to know if I’m alone in these feelings!

 

Love Sam xx

Yet another hernia surgery

Hello you lovely lot! Firstly thank you for so many wonderful messages of love and support, it means so much!

Secondly, I thought I’d take this time to explain a bit more about what’s gone on for the past week.

So last year, the tell tale lump appeared on my stomach, it was over the old stoma scar and I knew straight away it was another hernia. It hadn’t even been a year since the last hernia op and so I was really disappointed.

To be fair though, the hernias that we’re fixed in the surgery in 2016 were in the vertical scar through my belly button and also a parastomal hernia behind my stoma and these seemed to have held tight. This new one was just above my stoma in the old scar.

I had some scans last summer and the hernia was confirmed but I wasn’t ready to go ahead with another surgery. I was having a difficult time with me mental health and it all just felt too much.

Hernia surgery

Towards the end of last year, the hernia was causing more and more issues, I was getting leaks as it pulled my tummy out of shape, it was drawing my stoma inside my body and so getting bags to hold was a nightmare and it was painful.

I had my pre op appointment on 4th January 2018 and then was booked in for 12th March for the surgery. There was a blip where it was postponed till the 14th but then it reverted back to the original date.

I went in on Monday at 7am and was first up on the list. I spoke to the anaesthetic and to Mr Brown about what would happen and then went down to the operating theatre.

The anasthetists commented on how calm I was and how steady my heart rate was, which I found funny. I suppose after so many ops, you do get used to it and that unknown fear and worry is lessened. I also have such trust of the team in Sheffield that I knew I’d be looked after.

I came around a while later and though I wasn’t in pain, I was getting this feeling that I get after surgery, I think it’s a mix of the drugs, the anaesthetic, the adrenaline and being unconscious and I lay there feeling upset, panicky and tearful for no real reason!

Hernia surgery

I saw Mr Brown who confirmed that the hernia had gone down to my current stoma and as moving and resiting it is such a massive op that he had stitched it closed and meshed it again. This is a bit of a blow but honestly I was glad to wake up to the simple surgery recovery rather than a major op.

I just hope these fixes will hold now, the thought of more surgery is honestly too much to bear and so fingers crossed, this extra mesh will hold everything in place!

I was allowed home that evening, I HATE staying in hospital and I know I recover better at home in my own surroundings and so I was thrilled to get back to the kids and Timm.

I always forget just how much a general anaesthetic takes it out of you and I’ve slept pretty much for 3 days, though today I am starting to feel so much better and a lot more human.

Hernia surgery

Thanks again for so many lovely messages , from both family and friends and also readers of the blog. Each one means so much, especially when I haven’t even heard from my own mother so I’m feeling pretty shit! So it’s amazing to read so many supportive and caring messages and they honestly do help me a lot.

I have 2-3 weeks off work now and have spent the first week asleep! Timm is looking after me along with my kids and my big sis Lisa has FaceTimed me every day to chat which is fab. I hope I’ll be up to visitors in the next few days and can start to catch up with friends.

I need to be really careful for a few months to allow everything to fully heal, then the plan is to find a personal trainer with experience of abdominal surgeries and hernias to start to help me to rebuild some strength and feel strong, solid and able for the future.

Till then I’ll be found reading magazines, drinking tea and watching Netflix! Catch me on my Facebook, Twitter or Instagram

 

Much love

Sam xxx

Next surgery date

My next surgery will be next Monday, the 12th March and it’s for the hernia above my stoma from my old stoma site.

Im feeling really nervous for this one, I know it’s not the biggest or longest op I’ve had by far! But I think because I had mentally prepared myself for no more surgeries this one is freaking me out a bit!

I think my main concern is that the hernia is so close to my stoma that it’s a worry that if it’s too close, they may have to resite my stoma which is obviously a much bigger op with a tougher recovery.

The scans we are going off are from last summer and I know the hernia is much much worse than then.  So I suppose I’m just really apprehensive that going into a simple op may mean I wake up with a much harder surgery to recover from.

I’ll be heading in first thing Monday morning and it will either be a 1-2 night stay or a bit longer if the surgery is harder. And then home for a few weeks rest and recovery.

Work have been fantastic and have told me to take as long as I need, they are really supportive and it’s lovely as this is my first op where I’ve had sick pay!! After all my other ops we knew that it would be weeks and weeks of me earning nothing which obviously puts so much more pressure on us as a family and so it’s great to know that the pressure is off and I can actually concentrate on getting better without the voice in my ear telling me to get back to work and earn some cash!

Going into any surgery is scary, and I need to try and calm my nerves and ignore the dread in my stomach that something is going to go wrong.

Its not great timing, Ell starts mock GCSEs on the same day and I’m hoping that they can concentrate on their exams and not worry too much about me. The kids hate me being in hospital and I know they’ll be stressed next week. I hate that I cause them hurt and fear but we’ve talked about it and they’re feeling as ok as they can.

So I will let you know how things go next week!!

Thanks for all the messages of support

 

Sam xx

When your child is gay…

Last year my child told us they were pan-sexual.

At the time, though it was a surprise, I felt no different, I was pleased they knew they could talk to me and I was happy to know they felt comfortable enough to be themselves in a difficult and sometimes prejudiced world, but honestly? My thought process didn’t go much further than that.

Over a year on I thought I’d share my feelings about having a gay child and how my feelings have changed.

Well, one thing has been them telling me they were non-binary. I’ll be totally honest here, I really wasnt too sure what that meant. But after some googling and talking to my child about it, I have a much better understanding.

Theyre now 15 (how has this happened so quickly?! I’m sure I was changing nappies and freaking them out by watching Death Becomes Her only yesterday!!!) They prefer the pronouns they and them and sometimes I struggle with this. Not so much with the they/them but more when I’m describing them as my child.

Daughter or son flows off my tongue so much easier than child, I sometimes feel child or kid sounds less emotional, if that makes sense? I feel a bit like a Victorian mother saying “my child has done….”

Our relationship has never been closer, and the same goes with my husband. They share lots of things about their life (as much as any 15 year old does!) and we talk about anything and everything. (Including an in depth discussion about how a threesome with two men and one woman actually works!)

The biggest change for me has been how protective I feel.  Of course I am momma bear with all my kids, but it’s opened my eyes to the amount of bigotry that is all around me and I want to stand in front of them and protect them from ever hearing or seeing these things. I want to wrap a big blanket around us both and bat away any horrid or stupid or ignorant comments.

I know I can’t do this. And it hurts me to my soul.

I know they will face ignorant and hateful people throughout their life. I know people who don’t understand or don’t want to understand will push them away. I know that they will hurt sometimes.

I also know that those bigots will miss out on knowing one of the most amazing human beings on earth. My child is so kind, loving, funny, deep, silly, loyal, sensitive and fucking awesome.

Seriously, they’re my hero and make me want to be a better person every day.

I see things I didn’t see before. I see more of the comments on social media, not so much that they’re openly homophobic or hateful, more the snide comments that suggest anyone who isn’t cis gender is something of an attention seeker. Or that they’re something to be joked about and mocked. The comments or images where gender is questioned or laughed at.

Ive also opened myself up to a whole new world (for me) of language and understanding of gender and sexuality, I’m learning new terms and gaining a better understanding. This can be a bit scary, I feel afraid as a heterosexual cis gender woman to ask questions sometimes.

I’m afraid to say the wrong thing and upset someone, I don’t want to look like a tourist! But I think it’s important for me to educate myself so I can understand my child.

I even worry about posting this. I don’t want to put my voice above my child’s but I have always talked about being a mum on this blog and it seems worse to not talk about this than to be open. As with all my posts about my kids, they get to read and veto anything they’d rather I didn’t say publicly though.

Though my instinct is to stand in front of my child to fend off any negativity, I think the thing I’ve learnt is that I can’t do that. But I can stand right beside them, with my hand on their shoulder and my love in their heart so they know whatever they face in life, momma bear will always be right with them.

 

Love Sam xx