2023: the year of unwelcome surprises

2022 was a rough year for my health. I felt like I was in hospital more than I was out, with the cause always being an obstructed stoma. With each admission, the talk of further surgery becoming more and more common. It was decided that one day, in the future, I would need to have an inflamed mass around my stoma removed, but no firm plans were put in place.

After my first admission in early 2022, I was discharged on a cocktail of antibiotics and sent on my way.

Around a month later, I become unwell again and the situation repeated itself, however this time, my iron levels had dropped. Unfortunately, the notes on this got lost and my iron levels were never addressed.

Another 2 months passed, and I soon found myself at the GP, where they sent me for blood tests to check my iron levels. That same day, I got a call with the results and was told to go to urgent care immediately where I was given 2 emergency blood transfusions with an iron infusion scheduled for the following week.

Back home, post transfusion and I noticed that areas on my stomach were becoming increasingly itchy and tender to touch. Cue another trip to the GP, after which I was referred to urgent care.

If you’ve managed to keep up so far, I’m impressed. Buckle up. It gets even more fun!

I was kept in at urgent care and the next day, fluid started to leak from somewhere... The doctors decided that it was most likely from an abscess or fistula that needed to be drained. I was informed that if the fistula was attached to my bowel, I could end up with a second stoma... NOT IDEAL.

Paperwork signed; I headed down to the operating theatre.

I regained consciousness in the recovery room, I decided not to ask what had been done. I guess so I had a bit of a grace period where I can lie to myself and pretend it was all a dream.

I’m moved to the ward, and I could see a large dressing on my stomach, but was there a bag? I chose not to check. Feeling rather terrible, I decided to sleep it off and hope that the next day would bring some positive news.

The surgical team came to see me, and they were happy with what had been done. They explained to me that the abscess was not linked to my bowels and had been drained as best as possible. After a few bacteria tests, I was discharged from hospital with an open wound, plenty of dressings to look after it and the instruction to visit a medical centre if I had any concerns.

For the next 3 months, I was constantly dressing and redressing the wound, but it didn’t seem like it was healing. Nurses advised me that there was no cause for concern, and it would just take time.

I was working from home when my dressing popped off and was soaking wet, covered in some sort of black ink. I had seen this inky effect before, it’s usually been in my stoma bag a shortly after taking a multivitamin and the blackness is usually the iron. It was at this point that I realised that although it had come from the wound, that must somehow be linked to my bowels! A real kick to the proverbials.

Filled with panic that more surgery was looming, I made an appointment to see the Stoma Care Nurse to get it looked at. I was told there was nothing to worry about and given a small stoma bag to cover the wound while a referral to the surgical team was processed.

The following months after multiple appointments and check-ups, it was decided that the fistula would need to be removed completely and we would need to refashion my stoma.

While this was great news and I was glad it was getting sorted, it was tainted by the sudden passing of my father. This was a very dark time and meant that surgery had to be delayed while I looked after my mental health and planned his funeral.

2 weeks after my father's burial, my surgery date had arrived. The plan was to remove the fistula and its associated cavity, take out about 20cm of my small intestine to remove the scar tissue and inflamed mass and refashion my stoma.

However, when I woke up, things were very different.

I was told I now have 2 stomas. This confused me as I was sure I was going to wake up with my original stoma, just with a few tweaks! But I now had one on the other side of my body called a Jejunostomy aka. A Jej. Something I’d never heard of before.

Turns out, Crohns had done a real number on what was left of my small bowel, and this was the only solution. Having so much bowel removed means I’m at risk of Short Bowel Syndrome, something that I didn’t see being a problem for about another 20 years!

I still have the bowel between the jej and my other stoma, however it’s rife with Crohns, strictures and narrowing.

The plan is to let my body heal and treat with meds with the possibility that we’ll do small procedures to reconnect parts of the bowel and hopefully remove the staples they’ve had to use and go back to one stoma... yep, staples are what’s holding my insides together right now!

I’m writing this 4 weeks post op, still on a drip and everything that goes in or out of me is measured. My full care plan is a bit of a question mark, but I’m learning that hydration and malnourishment are going to be a challenge. Even my beloved cups of tea are throwing things out of whack, so it’s going to be a real balancing act.

So that’s it, you’re all caught up, life’s been a bit crazy to say the least.

Let’s see what the rest of 2023 brings.