From Colon to Semi-Colon: 1 year with an ileostomy

Not to be dramatic but, a year ago today, my life changed. I became an ostomate.

At 07:00 am on March 19th 2019, I was rushed into hospital in an ambulance due to a complete bowel obstruction.

I was barely conscious and was too weak to even feel afraid.

Cue 15 hours of the doctors trying to stabilise me enough to take me into surgery. I was severely weakened, dehydrated, I had a dangerously fast and irregular heartbeat and bacteraemia was setting in. I was barely conscious and was too weak to even feel afraid when I overheard snippets of the conversation between the surgeon and my parents, where the surgeon expressed serious concern over whether I could essentially make it through the surgery. I remember thinking, “is he saying I could die? Well, if I do, at least all this will be over…”. And that’s when I turned to the surgeon and, struggling against the NG tube running down the back of my throat said, “please take me into surgery, I want to get this over with”. He nodded.

I asked the anaesthesiologist to knock me out at the earliest possible opportunity, and she did just that. The next thing I remember is feeling bright lights hitting my eyelids, and hearing my mum’s relieved voice to my right, telling me that it was over and the surgery had gone well. I remember smiling and feeling a huge wave of relief wash over me. I even welcomed the post-surgery pains I felt throughout my body because, unlike the pains that brought me to hospital, these could only improve, and each passing hour was a step towards feeling much better.

Each passing hour was a step towards feeling much better.

That surgery turned out to be a sub-total colectomy, where two-thirds of my large intestine were removed, along with the terminal ileum and my appendix, and a temporary end ileostomy was created.

The reason any of this happened began some 9 months previously when, after 2 months of being in a full-on flare, an abscess was found within the intestinal wall. Cue months of antibiotics, cortisone, scans, IVs and blood tests. While the inflammation that had been running rampant months previously had ironically improved and was starting to subside, and the abscess itself had shrunk down to about a third of its original size, the last MRI showed the formation of scar tissue adjacent to the abscess, causing a narrowing in the intestine. A narrowing which could only be resolved surgically.

One night all plans instantly unravelled and I found myself in an emergency situation.

This triggered appointments and discussions to determine exactly what extent of surgical intervention would be required, ranging from a strictureplasty to a subtotal colectomy and ileostomy formation. It wasn’t long at all before this narrowing led to a partial obstruction and things became more urgent, requiring plans for surgery to be moved up. This was all being arranged and I was being closely monitored. Things seemed to be ‘under control’ and on the right path, when suddenly one night all plans instantly unravelled and I found myself in an emergency situation.

I woke up in intensive care with 2 bags attached to my tummy – one on the right and one on the left. I was confused. Why 2? I knew the intention was to create an ileostomy, so what was the second bag for? The surgeon explained that the left bag was over a mucous fistula – this was essentially the attachment of the end of the remaining large intestine to an opening in the surface of the abdomen, so that it would drain outside of the body (this was flush with the abdomen, unlike an ileostomy which protrudes from the abdomen and is ‘puckered’). Due to the infection I had at that location, it was considered a lot safer to have it drain out into a bag (later to be replaced with a simple gauze dressing) rather than risk anything leaking into the abdominal cavity, potentially leading to septicaemia.

Recovery was slow but steady.

Over the next 10 days in the hospital, the first 48 hours spent in ICU, recovery was slow but steady. I was fortunate enough to have very good medical care, be surrounded by loved ones and have my hand held the whole time. I had plenty of company, the kind which did not mind in the slightest if I fell asleep mid-conversation (which happened a lot)!

I was fascinated by my new stoma and how I was now functioning with an internal organ basically attached to the outside of my body! The first time I saw it, I was surprised by how big it was, compared to photos I had seen during my ileostomy surgery research. The surgeon explained that it would gradually shrink down, and it was swollen because of the obstruction and the surgery itself. Indeed, it is now less than half the size it originally was. Once I finally got back home, I think I pretty much just slept for the next week, being back in my own bed, and relieved it was all over.

But then the post-surgical histopathology report came through. The lab had found a cancerous tumour in the part of the intestine that had been removed. A tumour that had not shown up in a single MRI or CT scan, nor was it evident during the surgery itself. This changed things. Up to that point, the plan was to allow the gut to recover and, all being well, to reconnect (thus getting rid of the ileostomy) after 8-12 months or so. However, these lab findings complicated things.

One month after the surgery, a colonoscopy was scheduled, to check and biopsy the remaining large intestine, in light of the unexpected lab results. While there was thankfully no cancer detected, the biopsies did unfortunately reveal low-grade dysplasia – this is basically the initial stage of cell mutation that leads to the development of cancer. With that in mind, reconnection was no longer on the table.

Reconnection was no longer on the table.

So, I had to decide between what would essentially be constant monitoring and testing to keep an eye on the dysplasia and hope it didn’t turn nasty, or another surgery.

Knowing all too well what it’s like to live with the stress and fear of having ‘to keep an eye on’ something in your body, and knowing that reconnection was not an option any more, I decided to go for the ‘safest’ option, and the one that would give me greater peace of mind: a pan-proctocolectomy (aka Barbie Butt surgery!). More on that in Part 2.

Now knowing that we were to be life partners and not just temporary acquaintances, I named my stoma: Buddy. There was less than zero thought put into the naming process, I just realised that I was already addressing it as ‘buddy’ during its amusingly noisy moments, or when I could feel it moving, and especially during problematic bag changes – “come on buddy, give me a break/work with me/quiet down already” etc. And so I capitalised the ‘b’ and made it official. I also needlessly refer to the pouch as ‘the Chanel’, because why not?!

While recovery was slow and eventful, and the ileostomy took a lot of getting used to, with endless experimentations of how and when to do a bag change and what products best suited me and my ridiculously sensitive skin, I was relieved to realise that I genuinely just felt better overall. The pains, cramping, bloating, abdominal distention and generally just constantly feeling ill, were so much better. I was even able to take a short trip (albeit an easy-going one) 4 months after surgery, and it was great - the ultimate reward!

Once I recovered, the goal was very much to get strong and healthy again, to build myself back up ahead of the next, even bigger, surgery. More on that to follow...(read Part 2).

If you are due to have, or have recently had, ileostomy surgery, check out this post on some basic prep and what to expect in the early days.