I need pills to stay alive

In November, I had a big operation, which was to remove a tumour I had in my bile duct. It was originally blocking the way out of my liver and pancreas, which meant I was in pain, but also suffering from jaundice – something that started in August 2024. This was temporarily fixed in September (on my birthday, which everyone else thought was bad, I thought it was a great present!) with the fitting of a stent to open the duct up again (and which let me recover to normality), but needed to be done for hopefully a long-term fix and hopefully a long-term, cancer-free future.

But Whipple’s Procedure is a big operation. It’s been done for a long time and is typically quite successful, but involves a complete re-wire of the intestines to allow the removal of the bile duct. There is info on wikipedia and elsewhere about it, but it’s an 8-9 hour operation with 4-6 weeks of recovery typically, and means the way that you eat has to change permanently – you have to eat smaller meals more often, and in my case there are some foods that I just can’t tolerate any more (bread and pastry are just a no-go area in large amounts, so no pizzas for me).

One of the biggest changes in the operation is that due to the reduction or removal of the front part of your pancreas, you can’t produce the enzymes needed to absorb most foods, and that means you need to take those enzymes as a pill with pretty much everything that you eat. With a small snack (pack of crisps, a piece of cake) then you’d need one pill, and for a full meal you’ll need 3 or 4.

If you don’t take this, there are a couple of problems. Firstly, you will have huge amounts of wind. And we’re not talking normal levels of ‘a lot of wind’, it’s immense, so needs to be avoided at all costs. This can be really painful, particularly when you’re not fully healed. This happened on my first night home and ended up with me being back in hospital for a number of reasons.

But the second issue is that you ‘malabsorb’ – i.e. your body doesn’t take in the nutrients from the food that you eat. So effectively you’ve not eaten the meal that you’ve had, and not taken the nutrients that you need as well as energy, etc. In short, not having enough of this enzyme is a really bad thing.

Each person is individual in how much they need, and it’s something which I needed to experiment with after the operation to fine-tune what was right with each kind of meal, and to get to the point where I’m not taking an excessive amount of it. I definitely got it wrong early on (too little), and the results were not good.

You can’t overdose on Creon. Well, you can, but you’d need to take an immense amount of it – like 60+ tablets in one go, and they are large.

But the reason for being careful is a simple one, but the real reason for me posting this. There is a shortage of Creon and all of its alternatives. There’s apparently about 85% of the needed supply, which means people go short often. This shortage will last until at least 2026, from what I have read – so for me, this is a permanent situation.

When it’s issued by the pharmacy, you get 300 pills – 3 bottles of 100. Which for me lasts about 18-20 days. So every three weeks, I put in a repeat prescription and then my pharmacy does their best to secure supply, which isn’t always available. One time (which was late January, so bad timing overall for me) there wasn’t any available to them for 6-7 days – I’d called every day and the story was the same each phone call. And because the prescription was shared with another drug I have to take every day (which I’d already had), they couldn’t release the prescription to another pharmacy who did have some (Tammie had asked on the off chance at Tesco, and they had 6 bottles in stock), so I was stuck. I went to the doctor’s to ask them to issue another prescription to Tesco but because it couldn’t be released back to them, they said their hands were tied by the system. It’s not often that I cry in public, but I left in tears as it was so bleak, just after having January’s diagnosis. I’ve never felt more tested. I have no idea how I drove home.

I had about 3 days’ worth left at this point. There is advice available on support organisations which show how you can stretch out what you have to allow you to metabolise more food (avoiding fat is a good start, but fat is an essential part of any diet, and when your stomach is 60% of the size it was because you’ve had the operation, it’s essential as otherwise you just can’t get enough calories in each day), so I read up and prepared for whatever was coming.

And then the unbelievable happened. I got a text from Tesco saying my prescription was ready to collect! I couldn’t believe it, but went there and lo and behold, got the three bottles. Of course the girl handing them to me had no idea how important they were, but I felt like I was carrying the most precious thing in the world at that point – I opened the bag there as I was sure there would be the wrong thing in there… but there wasn’t. I actually held them aloft outside Tesco when walking back to T who was sat in the car. Victory!

And since then, it’s been the same deal each 3 weeks or so (minus the jeopardy as now they are on a standalone prescription). Put in a prescription, wait for approval, and then phone the pharmacy a couple of days later, hoping they’ve secured a supply. And so far since then, they have done when given a few days to get it together. Every time I call and they say it’s ready, the relief is palpable. I know that there will come a time when it’s not available, but so far it’s been OK. And each time, I take the pharmacy people a box of chocolates. They have a lot of people getting annoyed at them, and they provide an essential service in a largely thankless industry. So it’s my way of making things a little better for them. They know it’s important, but maybe not how important it is to me, and I always leave feeling doubly happy – I’ve got Creon and they’ve got some nice chocolates to eat.

But every person who needs Creon (and there are a lot of them – it’s not just for people who’ve had the same operation as me) has to go through this same thing every few weeks (depending on their needs, some need less than I do).

This obviously means that each meal time is accompanied with a few pills, and I have to plan ahead whenever I go out for the day – pretty much any significant amount of food needs a pill, and in addition I need to take other medication to avoid other wind and constipation issues, but T has been incredible in working out ways of doing this that work well whenever we do eat in public and it’s not been an issue so far. I even took some to a club one night, and when I got frisked the bouncer was fine once I explained what it was for, showed him the pill and told him my diagnosis (which definitely led to an instant “You’re fine mate, in you go”!). I’m not complaining – it’s incredible that this is possible and without the surgery I wouldn’t be here writing this now for sure – but it does add a lot to everything that you do every day, and mine is a minor inconvenience compared to what some people have to go through every day.