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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Colectomy with UC and PSC

Dear Worriedwife,
Thanks for the recent update you posted. I do hope the dilation will work at his next ERCP procedure. Those stents can be very prone to bile duct infections if left too long in. I hope he will see improved function soon. This is a nasty disease, but encourage him to keep fighting on.

Mark

It certainly is nasty, just when you’re lulled into thinking all is good there’s a very bad day or week and you feel despondent for them but he is amazing, works so hard to be well and that keeps me up too. What happens following balloon dilation is it like stenting in that its temporary and is it redone regularly or depending on your how your health is?

Prior to placing a biliary tract stent, the stricture is balloon dilated to open things up. Stents can contribute to infection and require a second procedure to remove or replace, so some doctors asked what would happen if they balloon dilated without placing a stent. Studies show that balloon dilation without stents works as well as with stents and, as noted above, has less potential side effects. Balloon dilation needs to be repeated when strictures return.

Thank you :blush: Would balloon dilation be scheduled every 3/6 months like stenting or would it only be done if your condition warranted it ie. if you were sicker and docs assume you need it done then?

Only done when warranted. Not having to go in every few weeks/months to replace stents is a big advantage of balloon dilation only.

Okay thanks very much for your help, docs don’t give much information when asked unfortunately. The usual reply is they will do this and see how it goes, then you dont see anyone until the next scheduled appt so you have no choice but to take it as it comes.

Worriedwife,
You must be more assertive with the doctor and let him know respectfully but firmly that he needs to be open and communicative in his care plan. Make sure all your questions are answered. You are not a number but a human being fighting a deadly disease. Don’t let him brush you aside. If this continues I’d find a hepatologist that cares.

Mark

Just to update on the current situation… balloon dilation didn’t work, the surgeon couldn’t get through the bile duct to remove stents as it was fully blocked. He’s hoping its pancreatic fluid collections pressing into the duct and blocking it but he has to wait for a ct scan next month before deciding what to do . Has anyone had this trouble please?

Worried wife, sorry the dilation was not successful. What symptoms does he have as a result?
Jeff

Hi Worriedwife, I am sorry to hear this as well about the ERCP. I did have this happen to me on one occasion when my PSC had progressed to a crisis point. They did try again in 2 weeks after that and the doctor was successful in pushing through and opening up the blockage. I do hope they can get those stents out soon though as they are an infection waiting to happen. If you notice any signs of chills, fever or even heading in that direction I’d contact this hepatologist about starting a round of antibiotics. Hopefully they will be able to resolve without too drastic a measure.

Mark

He actually hasn’t any symptoms, his appetite is good enough, maybe a little more tired but no nausea or fever or anything else. He’s due a ct scan on 27th of July to check for pancreatic fluid collections so unless something happens in the mean time we must wait it out.