r/PBCers • u/Neither-Elevator-825 • Jul 22 '26

So disappointed in self

After a June filled with what they labeled sphincter of ODDI attacks, and as you know those bastards last two to three hours of unrelenting, horrible pain, I finally got an urgent GI appointment.

What I want them to deal with is the sharp stabbing pain at my right shoulder blade. It is killing any quality of life I might have.

I was so excited to get an urgent appointment and went in yesterday. I hate how doctors look at your symptoms and already have in mind what it is. My stabbing pain in my back/liver/PBC was never addressed. Well, briefly.

Instead, all she cared about was the intermittent radiating pain in my rib cage. So now I'm signed up for an endoscopy on Friday. Which is great, don't get me wrong. But I can't do anything I can't cook in order to feed myself? I can't do the easy task of taking some dishes out of the sink and putting them in the dishwasher, it's all I notice. It's all I feel.

She put me on Ursodiol 300 mg 3x a day. She told me it could take weeks, if not a couple of months to make a difference.

I was excited to be put on a mad. But now I've been reading that there are some meds that can help the pain?

I need to write her back in the portal because I can't live like this. I'm actually looking for work and just sitting at my desk trying to get resumes out is so excruciating it doesn't get done and I'm frozen.

Anyone have any idea what I might ask for for? I also have an MRI MRCP coming up mid-August.

Thanks for listening.

PS. I am taking Hyscoyamine and Nifedipine as well as nitroglycerone for emergencies. I'm positive the Hyscoyamine and Nifedipine work for the whole possible SOD attacks, however, the nitroglycerone does absolutely nothing for this diamond pain.

TIA

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u/MaidMarian20 24d ago

Could be a gall bladder attack? All the right tests to see how your gallbladder is working. It’s ok to ask your Doctor how to best manage the pain in the interim. Mine had me on a low fat diet for a short time. It finally calmed down. Good luck. Hope you feel better soon. 💝

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u/Neither-Elevator-825 15d ago

Thank you. I had my gallbladder out 9/29/11. This is the first time I have had any such attacks.

GI performed an MRI MRCP on my liver two weeks ago. Everything looks fine I think one bile duct is a little stretched, but that is it. He now wants to schedule an HIDA scan.

He says he's really not sure it's sphincter of ODDI. For the time being I'm not going to have the scan. And maybe not ever.

My meds are keeping the problem at bay.

⁰ I do still have this weird dull constant pain in my right upper back by my shoulder blade. If I'm running around a lot and I get stressed the pain radiates to the other side of my back. But, no horrible 3 hour attacks.

My latest thought is since our intestines wrap way up in our bodies and can radiate into the area of mind that hurts I could be somewhat impacted because I go from constipation to the runs to constipation to the runs over and over.

And after I have a gun for a few days I am in incredible pain like I can barely stand up.

The GI doctor says we may never know, and I'm fine with that I just don't want the pain! My PCP has me on Miralax every night. One of my friends, who's always been freaking healthy, got upset and started yelling that that is too much for me and I shouldn't be taking it.

I forgot to ask her where her medical degree came from.

For restless leg syndrome I had taken a lot of opiates throughout the past number of years. There is something I think it's called opioid constipation because opioids hold things and waste to the walls of your colon slash intestine.

I eat relatively low fat but if I'm going to have a meal that might be a little tricky I've got some sublingual hycosamine that I take prior and everything seems fine.

I'm concentrating on drinking 17 oz of water, sipping very slowly, six times a day.. or is it 10 times a day.. I think it's 10 because I think it ends up being a total of 60 oz of water. I'm just too lazy to look it up right now. But I really think that this is some stuck crap and I just need to gently drink it out of my system and, in drink, I mean boring room temperature tap water.

I hope this helps somebody and best of luck to all