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Surviving and striving

Things have been tough for the past few years but specifically the past 3 months have been absolute shit.

I feel like I’ve been in a really dark time, between work, moving house, losing my grandfather, kids and my health, everything has been so overwhelming.  Yet I’m starting to have hope that I’m coming through the darkness and like my favourite quote, I am remembering to turn on the light.

happiness quotes

No matter how tough life is, you have to just keep getting up every morning, you have to just get through each day.  There’s no real option is there? Everything that’s been going on has been so difficult, my last surgery was massive and such a bloody hard thing to come through.  But I survived it.

And that got me thinking about surviving and striving.  Survival is our basic instinct to get through shit times, it’s our fighting spirit, our adrenaline filled desire to live another day.

Surviving isn’t living though and it’s not enough for me. I want to strive to do more, I want to fill my life with excitement, happiness, laughter and experiences.  And the thing that stops us from striving for what we want is fear.


I have notoriously itchy feet, I am forever searching for the next adventure, the next job, the next event, the next wonder.  That’s not to say that I don’t appreciate what I have! I relish in my wonderful family, my exquisite friends and I find joy in pretty much every day I live.

But I think throughout my life fear has held me back.  The lack of a father made me fearful of not being loved.  I have a huge fear of disappointing those who I love, and sometimes that stops me from being myself.

I have a fear that people will think I’m stupid because I didn’t go to college or university and that becomes a chip on my shoulder that is forever with me and stops me applying for jobs, it stops me speaking to people I think are smarter than myself.

I have a fear of heights that stops me from doing the exciting things my husband and kids want to do.  That teamed with my fear of vomiting in front of others means scary rides, roller coasters, sky diving, all these exciting daredevil things, are a complete no no!

But overcoming my surgeries, surviving 4 operations in 3 years, standing tall after years of health horrors and anxiety filled mind fucks have actually taught me something.  It’s taught me that I have faced and overcome things that would break some people.

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It’s taught me that I’m braver than I believe, stronger that I could imagine and a tough old badass.

It’s taught me that if I can deal with the shit hand I have been dealt, then I have no need to fear all the other stuff.  It’s made me want to strive.

So this year (after full recovery, don’t have a fit Timm!) I am going to, more than ever, be brave. I’m going to strive to do more things that scare me, to enjoy more, to try new things and to embrace every new experience that comes my way.

This isn’t about being a daredevil. But about me stepping out of my own shadow and enjoying life. Because I could have died. I could not be here right now and I need to celebrate that I am.

I’m going to fully immerse myself in my new allotment, I’m going to try some classes, go to more galleries, find events that are interesting and try them.  I’m going to say ‘no’ less and ‘yes’ more.  I’m going to read more, go out more, call friends more. I’m going to be a better mother, a more patient person.  I’m going to try and be the fullest version of myself that I can.  No regrets.

I’m not just going to survive. I’m going to strive.

 

Sam xx

Feelings about surgery

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.

sam cleasby so bad ass ulcerative colitis blog sheffield

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.

sam cleasby so bad ass ulcerative colitis blog sheffield

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

Bride with an ileostomy bag

I have been married to my awesome husband Timm for ten years in May 2014, we married in Las Vegas with Elvis in gold lame, an amazing experience that was so fun and just right for us at the time.  We had two small kids and the pressures of planning a big white wedding got to us and so we packed up and eloped to have the most ridiculous, fantastic wedding we could think of!

viva las vegas wedding

viva las vegas wedding

We had an absolute ball and it was just right for us, but it was marred with sadness that some people who really mattered to us couldn’t make it.  So for our tenth wedding anniversary we decided to renew our vows, that is happening this September in a ceremony and reception that we can invite all our nearest and dearest to.

I am currently in the midst of planning the whole shebang, I am spending more time than is healthy on pinterest and just trying to plan the perfect wedding for us now, ten years older and wiser.  Im looking at beautiful venues, Ive asked my (NINE) bridesmaids if they will be part of our day, we are looking at food and music, themes and Im spending a LOT of time reading Rock n Roll Bride.

But Im also feeling worried.  Im thinking about how this will be a day where Timm and I are centre of attention and crazy scared about being a bride with an ileostomy bag.  I brazen it out most of the time and if you read my blog you know Im not against showing my bag off, it helps me to think Im helping raise awareness when I talk about my experiences with a stoma but sometimes it hits me hard.

As I look through hundreds of beautiful wedding dresses I look at the fronts to see if my ileostomy bag would be on show, I think about where waist bands will sit and whether they will cut across my bag, I wonder whether my forced cheer will hold out on me wearing a big white dress.  I think about the horrific consequences of a bag leak in a wedding frock!!!

I see all this gorgeous, silky, lacy wedding underwear and laugh wryly wondering if they do anything to fit around a stoma, then I get scared that I won’t be a ‘proper’ bride whilst sporting an ileostomy under my gown.  I wailed at Timm this morning that Im going to be a bride that smells of poo… He laughed his head off and reminded me that I never smell of poo and gave me a cuddle.

Im finding it hard to put into words how I feel about being a bride with a bag, of course I know it doesn’t make a difference, but I can’t help feeling a bit sad that I won’t be a ‘perfect’ bride.  Id love to be able to take the stoma off for a day, to have one day where Im not thinking about medical things.  I want my bridal handbag to be filled with pretty things and perhaps a drop of dutch courage, not stoma adhesive and barrier creams.  I don’t want to have to worry that if I drink champagne that my bag will get gassy and Id rather my wedding night didn’t involve a big plastic bag stuck to my stomach!

I sometimes worry that Timm shouldn’t have to deal with all this, that he should  have a wife who doesn’t carry bodily waste around with her.  And I suppose those feelings are coming to a head whilst planning our renewal.  I DO know that all these things are in my head, that in reality Im a super lucky woman who has a husband who loves her.  I also know that our wedding renewal is about love.  Its a celebration of our relationship, our joy, our devotion to one another.  Its nothing to do with being perfect, anyone who has been together fifteen years knows their partner isn’t perfect, because we are all deliciously and uniquely flawed, its what makes us who we are.

Timm said to me this morning “I think you are beautiful at your very worst, at your best you have me in tears”

And thats why Im marrying him.  Again.

Love Sam xx

Surgery day is upon me

After last nights epic transfer stress (told me to pack up at 6.45 and I finally got into bed at the other side at 1.30am!!) I’m finally in the Northern General. I had a terrible nights sleep, my fears and anxieties just got the better of me and I spent a fair chunk of the night in a state of panic.

This morning the surgeon has been to see me and has made the final confirmation that surgery is definitely the right decision and will be going ahead today! I don’t have a time yet but I’m on nil by mouth and they’re attaching IV fluids and the like to me so I’m thinking it won’t be too long.

So how do I feel?

It’s odd, at times I feel total abject terror. The thought of the actual surgery is such a frightening thought – I’m scared of the whole cutting and removing and all… I’m frightened of pain and if there’s difficulties. I’m frightened of this feeling of being alone. I have the best husband, kids, family and friends and I’m so well supported. I’m overwhelmed by the kindness I have been shown. But in these hours of waiting and those long, dark evening times I’m so very alone with my thoughts.

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But on the other hand I know this is the right thing to do. It’s the start of a journey that should end in me being well. I’m excited to think of a life that won’t include Ulcerative Colitis. To think Ill be able to plan in advance without the fear that Ill be crippled by a flare up.

I’ve said for years that I really just want to be a ‘normal’ person without having to take a host of meds to function. Some people who know me may say Ill never be normal but hey!!!

So this morning I’m going to sit, try to relax and think about the things in my life that make me blessed. My husband. My kids Charlie, Ellie and especially Thom! My family. My friends.

The fact that we live in a country that means my care is free! I read American IBD blogs and I’m shocked at the stress they endure on top of their illness with money and insurance.

I know it’s a terrible clique but I do feel that today is the first day of a new life for myself and my family.

I’m on the emergency list which means the surgery is imminent but if another priority comes in ahead of me, my surgery will be dropped back.

I’m quite weepy still today, I wish I could say I’ve got my big girl pants on and a brave face but more often than not its a slightly panicked, puffy moon face with red eyes!!! I swear in my head when I weep I look like this…

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In reality it’s more like this…

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Thank you for all the folk reading the blog, I’m blown away. Yesterday over 400 of you were reading and the numbers are going up all the time. It’s amazing and I’m so honoured to have you share my journey with me. The whole reason for this place is to break the poo taboo and to get people talking about IBD, Ulcerative Colitis and Crohns – I just hope my ramblings can help others. The other reason is that getting it all down is very cathartic for me. I know some people might think I share a little too much but I really think if I’m going to do this I need to do it openly and honestly.

So Ill see you all on the flip side! Still rollin’ with no colon!!!

Much love

Sam xxxx