Before I reflect on one part of every hospital stay that is always frustrating for someone with a j pouch, I do want to say my 2 recent admissions for pancreatitis were fantastic and the nurses looking after me (aside from one) were amazing as always.

It’s safe to say that whatever I’m admitted for, my bowels (or realistically the tiny bit of small bowel remaining) always comes to the party. That’s because I usually need IV antibiotics, I’m usually dehydrated and quite often not eating much at the time (j pouches get hangry, fast). When you have ~2 metres of bowel left, it doesn’t respond well when your body is fighting something.

So it was no surprise when a few days into my acute pancreatitis attack the waterworks suddenly started happening. I’ve learnt from previous admissions that it’s better to ask for what you need, than wait for it to be offered. I promptly asked the nurse for big incontinence pull-ups, and the following day asked my specialist to be charged gastrostop.

I understand its process and part of monitoring to find out roughly about patients opening bowels and the consistency, but the anticipation of this question and having to explain my unique “plumbing” gets me every time. So of course the question starts happening and to be fair most nurses listened and adapted their language to be like, for your normal how has it been etc.

Unfortunately mid way in my first stay, a real stickler for the rules and process sort of nurse comes on duty. I ask her for gastrostop and she proceeds to give me a lecture on how it can actually really block you up if you take it when you don’t need it. I’m a good patient, so I nod and say yep I know but I’ve been charted it by the doctors.

She starts asking me how many times I’ve opened my bowels had that day and my honest answer is that I don’t know. She replies, come on, it’s not that hard, give me a number? At that point I am so annoyed I just say – I am wearing pull up pads because I can’t control my bowels right now – and no joke, she still asks me for a number. Is it not embarrassing enough I’m a 34 year old needing to wear adult diapers?!? That clearly made her reflect because she came back, and said ok I get the sense you know what works for you…. *duh*

The other question and line of investigation that always happens is – “we should get a stool sample to see if there’s an infection going on” I always say, there 99% is not because this happens all the time because like I’ve said, I have close to zero bowel so antibiotics and being unwell and not eating causes this every time. The only time I did say yes to a sample was earlier in the year when I had an abdominal abscess because to be honest that came out of nowhere so there could have been something with my bowels too.

I write all of this knowing that you can’t change a whole system for the outliers, but it does raise the question that’s being talked about a lot at the moment – how do we make medical care more focused on the individual patient? Are there common follow up questions we can embed into doctors rounds and nurses monitoring that are more inclusive and make the patient feel heard.