Just when you start to feel like you’ve found your rhythm again, immunotherapy has a way of reminding you who’s really in charge.

This week, immunotherapy-related colitis made its unwelcome return. For those unfamiliar, colitis is one of the more common and more brutal side effects of drugs like ipilimumab and nivolumab. These treatments supercharge the immune system to attack cancer — but sometimes that same immune system turns on healthy tissue, particularly the gut. The result? Severe diarrhoea, abdominal pain, dehydration, exhaustion, and a level of disruption that’s hard to describe unless you’ve lived it.

Yesterday was a hard day with a bout 15 trips to toilets and no amount of planning can prepare you for when your bowel wants to (AND WILL!) open. Taking extra sets of underwear with you around town and even short trips becomes a necessity.

Then last night – sleep depravation was rampant with no less than 10 bathroom trips in a matter of a few hours. Sleep was interrupted with the sudden pain in the Pitt of the stomach – it said “Move – FAST”!

Treatment is swift and serious. Today was started on nearly 200mg IV methylprednisolone, a powerful steroid given through a drip to calm the immune system down as quickly as possible. This isn’t a gentle nudge — it’s a full emergency brake, I have an oncology meeting tomorrow at the local hospital – it should have been followed by my 3rd IPINIVO. Instead it will be another dose of methylprednisolone and another on Thursday.

The nurse was very concerned about my condition as I was so dehydrated and she was not getting a “good vein” for the butterfly kanula and I was feeling quite unwell during the whole episode. Eventually we got there and commenced the bloods for testing and the infusion of steroids.

Once things stabilise, the next phase begins: high-dose oral prednisone starting at 60mg, slowly tapered down over weeks at a rate of 5mg every 5 days. The aim is to keep the inflammation under control while avoiding a sudden rebound.

Steroids work — but they come with their own challenges. Insomnia, mood swings, increased appetite, muscle weakness, and that strange wired-but-exhausted feeling. You’re grateful for the relief they bring, but they take their toll too.

Colitis isn’t just a physical condition. It messes with your confidence, your independence, and your plans. It shrinks your world to the distance between you and the nearest bathroom. And mentally, it’s tough — because it’s a reminder that even when the treatment is working, the battle isn’t over.

This time my experiences with melanoma differ – every other time the cancer has been removed surgically. This time surgical intervention has been ruled out – I’m carrying an unwanted load that, on your own, you’re powerless.

You have to give 100% trust in the brilliant team looking after you – they are trying so hard to get the right outcome!

But here’s the strange paradox: colitis, awful as it is, can be a sign that the immune system is highly active. And in the world of immunotherapy, activity can sometimes mean effectiveness.

So once again, it’s about patience, steroids, hydration, bland food, and listening to your body. It’s about accepting help. And it’s about remembering that setbacks don’t erase progress — they’re part of the story.

Not the chapter you want. But still part of the fight.

If you feel inspired by any of my blogs and personal experiences then please follow my site for free.

Also if you feel the need to help raise money for equipment for early diagnosis please consider a token donation of any amount. The fee for any donation can be set at nil on the donation page so that the charity receives every penny including gift aid.

Click here to make a donation.

Just when you start to feel like you’ve found your rhythm again, immunotherapy has a way of reminding you who’s really in charge.

This week, immunotherapy-related colitis made its unwelcome return. For those unfamiliar, colitis is one of the more common and more brutal side effects of drugs like ipilimumab and nivolumab. These treatments supercharge the immune system to attack cancer — but sometimes that same immune system turns on healthy tissue, particularly the gut. The result? Severe diarrhoea, abdominal pain, dehydration, exhaustion, and a level of disruption that’s hard to describe unless you’ve lived it.

Yesterday was a hard day with a bout 15 trips to toilets and no amount of planning can prepare you for when your bowel wants to (AND WILL!) open. Taking extra sets of underwear with you around town and even short trips becomes a necessity.

Then last night – sleep depravation was rampant with no less than 10 bathroom trips in a matter of a few hours. Sleep was interrupted with the sudden pain in the Pitt of the stomach – it said “Move – FAST”!

Treatment is swift and serious. Today was started on nearly 200mg IV methylprednisolone, a powerful steroid given through a drip to calm the immune system down as quickly as possible. This isn’t a gentle nudge — it’s a full emergency brake, I have an oncology meeting tomorrow at the local hospital – it should have been followed by my 3rd IPINIVO. Instead it will be another dose of methylprednisolone and another on Thursday.

The nurse was very concerned about my condition as I was so dehydrated and she was not getting a “good vein” for the butterfly kanula and I was feeling quite unwell during the whole episode. Eventually we got there and commenced the bloods for testing and the infusion of steroids.

Once things stabilise, the next phase begins: high-dose oral prednisone starting at 60mg, slowly tapered down over weeks at a rate of 5mg every 5 days. The aim is to keep the inflammation under control while avoiding a sudden rebound.

Steroids work — but they come with their own challenges. Insomnia, mood swings, increased appetite, muscle weakness, and that strange wired-but-exhausted feeling. You’re grateful for the relief they bring, but they take their toll too.

Colitis isn’t just a physical condition. It messes with your confidence, your independence, and your plans. It shrinks your world to the distance between you and the nearest bathroom. And mentally, it’s tough — because it’s a reminder that even when the treatment is working, the battle isn’t over.

This time my experiences with melanoma differ – every other time the cancer has been removed surgically. This time surgical intervention has been ruled out – I’m carrying an unwanted load that, on your own, you’re powerless.

You have to give 100% trust in the brilliant team looking after you – they are trying so hard to get the right outcome!

But here’s the strange paradox: colitis, awful as it is, can be a sign that the immune system is highly active. And in the world of immunotherapy, activity can sometimes mean effectiveness.

So once again, it’s about patience, steroids, hydration, bland food, and listening to your body. It’s about accepting help. And it’s about remembering that setbacks don’t erase progress — they’re part of the story.

Not the chapter you want. But still part of the fight.

If you feel inspired by any of my blogs and personal experiences then please follow my site for free.

Also if you feel the need to help raise money for equipment for early diagnosis please consider a token donation of any amount. The fee for any donation can be set at nil on the donation page so that the charity receives every penny including gift aid.

Click here to make a donation.