Thread by @headlighty

I've been diagnosed with cholangiocarcinoma one month ago. Today I decided to go public to help raise awareness on this rare but raising disease.

The @CCA_Alliance aims to establish a global voice for #cholangiocarcinoma – support them by signing the GCA pledge today & share it #BileDuctCancer globalccaalliance.com/en/get-involve…

How this has started for me. I had some stomach ache back in July, doctor thought was a stomach bug -damn chicken wings-! And then again in early September. Symptoms were slightly different from my standard gastritis but didn't pay attention at the time.

Had also some itching, but hey, with nickel allergy that's pretty much my norm right? By the time I came in Italy early in September I had also very dark pee and started turning yellow, Simpson yellow!!!!

I went to A&E and diagnosed with jaundice and stenosis of bile duct. Since then, I spent more time inside the hospital than outside. I discovered that life inside hospitals follows different time/space constructs. And it has been all a rollercoaster of events and emotions.

Numbers on this look from, but my amazing doctors and oncologist are quite positive, so I try to balance myself in-between.

Why am I telling you this? In the initial part of this journey I found little to no information about jaundice, especially in adults, and indeed was and still is the biggest issue I have to face. In my life I've confronted so much pain, endometriosis one of them.

Still the pain and struggle caused by the jaundice itching is another thing. I found myself crying for hours asking for a remedy, which by the way does not really exist, looking for every corner on the internet to get zero information. So if you find these, I hope they help.

The itching has prevented Mt from sleeping for over a month. No joking, no more than a couple of hours of sleep per day -fitbit doesn't lie. And in that condition I had to take very serious decision about my life. So if you are in a similar situation,

Get yourself very critical and practical family members and friends that help you vivisect the problem and solutions. Too positive people are great for strength, but they may overlook serious concerns. You need informed and evidence based decision making.

Itching goes down only after bilirubin goes down. And this may take time. My first stent -a plastic one- displaced itself after one week, making my first procedure completely useless and gifting me with high fever and huge back pain. Maybe consider a metal stent since the start.

I avoided it due to the nickel allergy, I ended up having one in any case.
After floods if IV, the way I manage now bilirubin is with Deursil + Cholestyramine. It takes time though, itching will disappear in one week, so you need to be patient.

Moreover even with a stent, I discovered I still need the drugs otherwise I can easily get relapse. It already happened twice. I think this is highly individual though.

I thought about writing a blog a about this but I'm not sure I have the time and energy to do so, so probably tweet is the best way at the moment.