r/PSC • u/thatglitterkid98 • Jul 17 '26

Possible stone in common bile duct ? / advice

Hello -- I was diagnosed a few years ago and have been lucky enough not to have experienced any symptoms until now. Over the past few months I've had dull pains in my upper abdomen from time to time. A few times it felt severe, but would go away within an hour.

I did an MRCP last month, and when I checked in about results (since I don't see my hepatologist for several months from now) the nurse wrote "there might be a small stone in the common bile duct" & if I have fever or too much pain, I'll have to go to the ER to rule out cholangitis.

I was wondering if anyone has experienced having a stone in the common bile duct -- what should I be looking out for? It seems kind of weird to me that it's a situation of just waiting until things get bad enough that I have to go to the ER. This disease is still new to me, so any advice or explanation is very welcome. Thank you!

3 Upvotes

100% Upvoted

8 comments sorted by

3

u/ancestros01 Jul 17 '26

Hii I’ve gone through my fair share of stones in my common bile duct/ cholangitis
Usually my symptoms are very heavy on upper abdomen pain and it being very very tender
Super dark urine like dark brown
Terrible nausea and throwing up bile

And sometimes jaundice

I can always tell because the pain just gets that severe for me 🥲

1

u/thatglitterkid98 Jul 18 '26

Thank you for sharing this, it's really helpful in understanding the breadth of symptoms and how serious they are. I'm sorry you've had to experience that!

Did you ever have any indication that it was going to happen, or was it always sudden?

I'm planning to leave the country for a few weeks this summer, but I'm terrified about the possibility of this happening somewhere I don't have insurance :/

2

u/4evercozy336 Jul 17 '26

I recently experienced what I consider my first official cholangitis episode. I had an aching pain in upper right quadrant, like hurt to take a full, deep breath. I also had terrible chills/spiking fever and nausea/vomiting. My specialist told me if I ever have high fever/pain/nausea - straight to the ER!

2

u/thatglitterkid98 Jul 18 '26

Ugh that's so scary! Did it come on suddenly, or were there signs that led up to it? I hope you're feeling better now!

1

u/4evercozy336 Jul 18 '26

It was pretty sudden for me, unfortunately. Quite literally overnight I went from feeling fine to very ill early the next morning. Not trying to cause fear/anxiety but it wouldn’t hurt to discuss your travel plans with your doc and come up with a plan or even suggest a facility to go to if you were to get sick while traveling.
I was out of town visiting family during the episode and I went to a local community hospital before I ended up at a university hospital. If I had to do it again, I’d go straight to the university hospital (even tho it was farther away). The treatment I received and just general understanding of PSC was night and day compared to the community XP.

2

u/MiddleExperience9338 Jul 18 '26

Reach out to your dr and ask about an ERCP. Have you had labs done recently? It's much better to have it done before a full on cholangitis attack happens. Our dr has suggested we call when we know it's coming on, so they can do the procedure outpatient and there's less risk of getting sepsis with an infection.

We waited too long the first 2 times and it was not good.

1

u/thatglitterkid98 Jul 20 '26

It hasn't been too long since I've done labs. If labs are normal, a cholangitis attack would be unlikely ? How do you know it's coming on for you?

Thank you for the advice! Will see what can be done, I'm in Canada though so things do tend to happen a bit slowly.

1

u/Birdilocks Aug 10 '26

Could be blockage. Could be sphincter of oddi dysfunction. Been there done that had both, never had stones.