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I’m very confused and need help


#1

Hi everyone I have been on this forum on and off. Definitely the most challenging year of my life . It’s been since September 2017 that my life has changed . I started with upper right abdominal pain and MRCP diagnosed PSC but then all of a sudden I had an episode of colitis for the first time. They put me on Cipro and flagyl and two weeks later I had ERCP and the GI doctor that is a specialist in ERCP said he didn’t see any strictures despite my MRCP. My pain is still the same, liver biopsy shows mild fibrosis and I had another colitis and another MRCP showing signs of PSC. I’m scheduled for another ERCP this Tuesday . My question: is it possible the first time they did ERCP antibiotic cleared it and now if I do it again they will see the strictures ? Has anyone gone through this before? I just find it very odd that strictures will not be visisble in ERCP with just two weeks of antibiotics . I would appreciate your comments.


#2

Hi Sami2017,
That is not my experience and seems unlikely to me too, but I sure don’t know. I do know that I am sorry that you are facing this and don’t blame you for being confused in the least. Please let us know what the new ERCP shows. I sure hope that there IS improvement for both your PSC and colitis!
All the best!
Doug


#3

Hi Sami,
So sorry you are still having pain issues even after ERCP and antibiotics. It has not been my experience that antibiotics clear blockages in your bile ducts. It will get rid of infections, but only ERCP will clear the blockages. I assume he also looked for stones in the pancreatic duct while he was in there? If not, he might want to check that. I did have a few gall stone pieces get in my pancreatic duct and they cleared that very carefully during one of my ERCP’s. Hopefully the next go round if there is a stricture they will see it and be able to dilate and clear it up for you. Let us know how things turn out.

Mark


#4

Thanks mark and Doug for your support! I will let you know what happens on Tuesday. I’m trying to be strong but it’s very difficult.


#5

Hi Sami2017,

I have no answers but wanted you to know I read your words, I hear them, feel them, understand them. Fear is part of this crazy process and in my experience, sometimes it cripples us and other times it propels us! Overtime as we settle into our reality or realities I found the Fear was replaced with a feeling of what next - like walking over an opening but not falling through.

We have to trust our docs and our hearts. You hang in there and if the MRCP shows less or no stricturing - run with it! I’d love to say more but we know disease is disease, but that being said, we surely can celebrate our bodies gaining when they do.

We are out here with you!
Peace and Hugs,
Jennifer


#6

Hi Sami2017,
Welcome! Reading the responses from everyone are hopefully, giving you courage. We each have been in our own emotional dark place with this disease. Don’t stay there. Finding the pathway back to hope and positiveness is, in my opinion, the only way to win the fight with PSC. I hope the individuals on this board fill in the gaps of your own thoughts, give you hope, knowledge and propel you forward with a winning attitude.