Today I celebrate FOUR YEARS with Pricilla, my ileostomy.
Today is bittersweet because it floods my head with memories of a very tough surgery, an unknown recovery as well as all the achievements I’ve had with a part of my intestine hanging out my belly.
But in four days I’ll have a new stoma; a refashioned one due to my hernia. I’m in the grey area of knowing already about stomas and post-op recovery but also unsure of how this one will behave, compared. Comparison… it can’t be helped.
I have lots of gratitude for my stoma. With a complex love/hate relationship, finding positives has become easier but those negative occasionally creep in, naturally.
For anyone going through a tough recovery, debating if you need one, wondering if this is difficult or worth it; know all your answers can be answered. You are not alone in finding clarity or hope or the truth about stomas.
Not everybody who has IBD will need a stoma bag. I had five years of trying medications, lifestyle and dietary changes before I needed surgery. And even though that surgery made my IBD flare so much I required stoma surgery, I’m not mad. In fact, I’m sort of glad.
Having my bag has made a huge difference in my overall IBD picture. I don’t suffer from diarrhoea, I don’t loose blood, I can maintain my weight and nutrition and most importantly, I’ve gotten back some much needed QoL
But life with a stoma isn’t always simple. It can be messy – literally when you can’t control when you take a sh*t – and it can be painful – sore skin, ouch! – but it can also really affect body image and self confidence. I know I struggle here a lot.
Let’s break it down to word association; how do I perceive the two things I will live within for the rest of my life?
What my bag makes me think of:
What my disease makes me think of:
What are your thoughts? 💭
Hands up, who else has been here?🙋🏼♀️
I remember every time I started new medications for my Crohn’s, I would always wonder if this one was going to be the magic one to fix me.
For the most part, the medications I took either did alot of good or did nothing. Biologics – Humira, Infliximab and Vedolizumab – worked the best for me. Everything I took orally, didn’t seem to get where I needed it [my terminal ileum pre-2016 and my ileum afterwards]
The trick for me was whether my Quality of Life [QoL] was better on the medications or not. That’s how I judged my feeling of being ‘sick’ and being ‘better’.
Just over a week to go until surgery and I’m getting nervous. The pain has increased, the nausea is back and I’m fed up with the bulge of this hernia.
It takes me back to trying to wrap my head around my stoma; it was this time four years ago I was in the hospital getting used to an NG tube before a PICC line was placed and sh*tting blood after a HORRIFIC scope. Mourning the loss of my colon, it was a weird time.
Without it, I’ve thrived.
So while next Thursday I will have a new stoma and a belly full of mesh, I am trying to take stock. It’s not always easy – trying to find the positives in all of this *gestures around* – but knowing I was saved by having my intestines hanging out my belly is both amazing and insane.
And that is how I see things – amazingly insane💜
Even after almost a decade with Crohn’s Disease, it still amazes me how quickly you can go from feeling ‘fine’ to absolutely rubbish.
From pain, nausea, fatigue, brain fog and mood swings; there is always something in flux.
Anyone else with me?🙋🏼♀️
I’m sure we’ve all been here.
At first, you sort of hope you’ll get better too.
But then when you don’t, this statement becomes something you dread.
It’s tough to explain – without too much detail, which is probably why the statement doesn’t stop being asked – that while you look okay on the outside, inside is a different story.
While you have good days, weeks or even months at a time; inside is a different story.
For those who only see a snapshot of how we portray our disease, of course they might say ‘so you are better now?’ because in that moment, you are okay.
But chronic illness is just that – CHRONIC.
It is also largely invisible.
So while this statement is said by those who are mostly unaware of IBD, it does sting when it comes from those who have asked before or know you well.
We have been there. Talk to us. Share with us. Don’t give up hope. We’re change opinions through advocacy and awareness each day.
Lately I’ve been thinking about all the time I’ve spent having testing done for my Crohn’s Disease.
I’ve had CD almost a decade. From the very beginning – probably six weeks after diagnosis – it was classed as severe. And for half of that time, I’ve been on medications to help best control that. I’ve had surgeries to help remove parts which were not – or never – going to response to medication.
It’s been a rollercoaster as I’ve had routine MRIs, Ultrasounds, lengthly blood work and scopes to check everything is doing okay.
Since having my colon out and living with my stoma, I’ve seen changes in how my testing is done – more calprotectin tests, no scopes and more frequent MRI scans. COVID halted alot of that routine hospital based stuff, so to get a CT done in May to diagnosis what we now know is my parastomal hernia, was a big deal.
I’ve gotten used to tests.
In some ways, I find them relaxing – 1) its routine now, so I can sort of switch off. 2) I know my team is looking out for my disease.
While strength and courage is sometimes highlighted as being part of a chronic illness warriors armour, I think as aspect such as ‘time’ and ‘routine’ is also part of it.
No one wants to have to be poked and prodded. But I would choose to be poked and prodded during my ‘well’ periods with IBD, than when I am not.
It is all what you make of it.
Plus, the longer you have things done for, the more of a ‘pro’ you become!
For most people, being able to draw a line underneath a chapter of illness is commonplace. A chance to move on and forget.
But when you have a chronic illness, there is no drawing a line. There is no end. It is lifelong, chronic and probably invisible to most.
But can you turn you back on it?
To some extend, yes. You can distract yourself, find ways to cope and accept the longevity of your condition, and in when in ‘remission’, find ways to ‘ignore’ it a little.
It will, however, always be there.
This is a difficult thing to accept.
And it’s not a easy thing to do.
So if you are struggling to find a path with your chronic illness – be it with medications, surgery, complimentary therapies, lifestyle and wellbeing changes – know that is won’t always be so hard. And struggle is something we have all experiences, at one point or another.
I’ve always found it really hard to be confident, full stop.
Then I got ill and it became even harder. With medication changes and dietary modifications, my relationship with my body took a huge nose dive. It would yo-yo up and down as my weight changed and I went through my surgeries.
And as proud as I am of my body for being strong enough to survive all the sh*t IBD has thrown at me, I still look at myself and don’t feel confident. I am still my own harshest critic.
Loving myself – as I am – is a personal and very private journey for me. And while I am still on this road, it’s important to note that I appreciate, recognise and understand wanting to share with the world, to ‘normalise’ it for people like me, who struggle.
I want to acknowledge my position right now, as brief as it is. And to be learning and growing, is a damn good thing.
I have a invisible chronic illness which mean you can’t see how visibly ill I am or can be.
My invisible illness manifests itself in my digestive system, somewhere no one can actually see without an invasive medical procedure.
But I know it is there. I can feel it. And I have done for almost a decade now. I’ve tried twelve medications, endured countless procedures and had three major surgeries to keep the little bugger at bay and ‘invisible’. Only my stoma bag shows a part of my insides – literally the bag covers a portion of my small intestine so I can poop.
Through it all I’ve seen the worse and best of comments from strangers and friends alike. And because I have looked ‘well’ there is an assumption I must feel that too.
It’s not always the case.
What I do know is that I am visibly strong when I get up every morning. I am strong when I am getting sh*t done and kicking ass. I am strong even when I am low because I know I can always rise to the challenge. Each. One. Of. Them.
YOU ARE STRONG too, even when you don’t feel it. I have you, I’m in your corner 💜