Flare up: stoma edition

I’ve had my stoma now for 8 years and I’ve always found it difficult to tell If I’m flaring with Crohn’s because my plumbing has changed and I present differently with regards to symptoms. My symptoms 22 years ago and now are completely different.

What I thought was a Crohn’s flare at the end of January has now been confirmed as liver damage which can lead to liver failure and this has been caused by scar tissue and a rather large cyst that has attached itself to my liver.

My symptoms

I made the informed choice back in December to come off of Pregabalin because every review was leading to an increase of the medication, weight gain was horrendous and it just wasn’t helping . It took 6 weeks to completely wean off of that medication and I wrongly assumed that the symptoms and weight loss was withdrawal from that particular nerve blocker.

The symptoms I am still experiencing, I thought this was my Crohn’s flaring and I made GP appointments and contacted my IBD nurse via email to get the ball rolling to work out what was happening.

Unexplained weightloss (so far I’ve lost 17kg since the end of January)
Hot & cold sweats
Rashes & sores
Unexplained bruising
Nausea
Fatigue
Vomiting
Cramping
Hair loss
Colour changes to my stoma output
Consistency changes to my output (it’s really greasy & very pale in colour)

My GP and IBD nurse booked me in for bloods, majority of my blood panels came back normal but my liver function is completely shot and my ALT levels are high and increasing by the week.

Managing my symptoms

I’m currently living the no fun diet of going dairy free, sugar free, gluten free & sticking to fish, chicken & salad.

My surgeon finally brought my appointment forward from November to the 18th of June and I’m now in a holding pattern until they book me in for my pre-operative assessment.

I’m still loosing weight, having weekly blood tests to check my ALT levels. I’ve been advised should I get any worse that I need to be admitted via A&E but I’m doing my best to avoid this by managing my symptoms under close watch from my IBD nurse & GP.

My stoma output

My output is rather dire, it’s either liquid or constipated, it’s colour has changed and stinks to high heaven so I’m currently using samples of deodoriser to keep that at bay.