Grateful for my Struggle

“In order for me to get here, I had to go there.”


I’ve never really sat down and thought about what having a chronic illness actually means.

It means a great deal of things to different people, so there is no one true answer to what having  IBD actually is like. The wide spectrum of symptoms, side effects and general wellbeing leads us down very individual paths.

My path has been around since September of 2011. But I’m sure there was a few bricks being laid in the months and even years before that fateful month. My problems were small and often resolved by simpler explanations other than “you have an autoimmune disease, your body is just going to keep fighting itself“. It was a strong and painful bout of food poisoning that set my Crohn’s Disease into overdrive.

Last year I spent a significant amount of time in the hospital. I’d lost my job early in the year after disclosing my troubling need to have my current situation – a long stricture in my small bowel which was causing no end of problems – resolved with surgery. I had said stricture removed – along with a huge ovarian cyst, yay for my colorectal surgeon recommending its removal at the same time! – and was sent home to continue recovering. This however would be the beginning of my troublesome summer.

It took me a long time last summer to finally say enough was enough.

The three months between my right hemicolectomy and my subtotal colectomy was the worst three months I’ve ever had with my Crohn’s. Even in those first few weeks after my diagnosis when I knew nothing about Crohn’s and I just wanted fixing; something that took months, not days like I naively assumed. Comparatively, last summer was dreadful on a new scale.

I would endure three awful admissions; in which no one could explain why I was back and in pain. I would have two MRI scans, one CT scan, numerous x-rays of my abdomen, numerous rounds of IV antibiotics, oral steroids, BAM medication and a failed pill cam. Not to mention the constant agony I was in; unable to eat, sleep, function like a normal human being. I was at my lowest; both physically and mentally. I saw no future, this was going to be it. I put up with it because I thought that some day, any day soon; things were going to turn around for me and I was going to get better. So I waited. And waited. And waited. In agony for months. Admissions were my way of venting my frustrations – I would go to A&E when I felt my worse but once I was hydrated and seen to, I would calm down. I could cope with it all again; I remember saying to my parents. They looked on, sceptically. I told myself that I just had to be patient.

I absolutely hated last summer. I hate the fact that my body has so cruelly decided it would just continue to cause me grief. It would continue to keep fighting me, even thought I was doing everything I could! It wore me down eventually, come the middle of August. I would have my ostomy created later that month; my last option.
My last option; it all sounds so permanent.
Well, it is.
It truly is.
When I first started to recover my subtotal colectomy, I was amazed by how well I felt. That scared me a lot. I was weak and frail – two weeks of TPN, Crohn’s kicking your ass and major abdominal surgery will do that to you – I knew feeling great was going to be short-lived. But it hasn’t been. My strength – both physical and mental – has come on leaps and bounds since my ostomy came along. As scared and as fearful I was about having an ostomy, I have become a stronger and more independent person. I am a more vocal patient. I am more because of what has been taken away from me.
Crohn’s disease controlled and ruled my life for so many years, it was hard to see a life when that wasn’t the case. But that is the case today. Today, my life is getting back to normal. And not just ‘sick person’ normal but actual normal. I see changes every day. They aren’t the huge changes and moments I had directly after surgery but things continue to improve. I continue to learn and evolve with my ostomy being there. My decision to not even consider reversing it has taken everyone aback. Yep, I am keeping my stoma for the rest of my life, I will not go back to my old life.
I am realistic: I know that despite being medication free right now, that might not always be the case. But I stand here, in a stronger position to accept that. I am a more forgiving person, knowing that the future is out of our control but the present, it’s for the taking.
So, without my past, I would not have my present. I wouldn’t have the strong chance to make myself a wonderful future. I am so happy to finally see what I am capable, sans colon!

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