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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Colectomy with UC and PSC

Hi Mark, its been stented since xmas 2017 when he was first diagnosed with psc and the latest restent was done xmas week just gone. That one was left longer than usual bring in for 6 mths and had begun to get infected. I was under the impression it cant be cleared and that it would be a major operation…Whipple probably? The brushings they have done so far have been c4 category and c3 from then on.

Hi,
I’m really concerned that the stent was left in for a full year. I notice you are from Ireland. I would really question his hepatologist about that. If his current stricture is in his common bile duct I’m wondering why that can’t be cleared. I wouldn’t think a Whipple would be needed. Have they not done a Sphincterotomy? I would think that along with the balloon dilation would allow them to clear that stricture on out. I do hope a specialist in advanced endoscopy is doing his ERCP’s and not just a GI doc.
I really discourage stents unless there is no other way to keep the duct open. And then, they are changed out every 2 to 4 weeks, certainly not 6 - 12 months like your husbands. You are just asking for a severe bile duct infection. I hope you can get some answers that will help him. I’m sorry he’s suffering so.

Mark

Im sorry i wasn’t very clear in my post re: ,time stents left in. The first one was placed in dec 2017, changed in jan 18. Thereafter the stent has been changed 3 times, the last one was left in for 6 months, i believe the reason was because he was hospitalized twice with pancreatitis due to one of the ercps and also because the 1st and only dose of iv infliximab caused fluid pockets in the pancreas to worsen.Therefore iv therapy has stopped. They didnt want to fiddle around when things were dodgy during the last few months. Maybe we will get answers next month at next appt. I can see a little downturn in energy now. The first 2 weeks following stent change were good but i can see the difference now. This really is an awful illness, day by day is all you can do.

I would try oral vancomycin before getting a colectomy Oral vancomycin induces sustained deep remission in adult patients with ulcerative colitis and primary sclerosing cholangitis.pdf (143.5 KB)

Damman_et_al-2018-Alimentary_Pharmacology_&_Therapeutics (1).pdf (491.9 KB)

Thank you Cactusgirl, there really does seem to be evidence there that it might help. Im going to ask about it at next appt. Anything is worth trying when you’re faced with this awful nightmare!

Worriedwife, if you can delay a colectomy, do so, but to a degree. But keep in mind that over time, the large intestine can weaken/disintegrate, which can be more dangerous than a colectomy/.

Does your doc recommend a j-pouch post-colectomy? A bag does not have to be permanent.

Jeff

Worriedwife,

I had a colectomy some 12 years ago, more due to early cancer detection, i underwent the j-pouch procedure that Jeff referenced with 3 months between the two part surgery (had the external bag for those 3 months). While it wasn’t easy and I wouldn’t wish it on anyone, it was manageable and I got through it. It has allowed me to continue the last 12 years and enjoy life.

Happy to answer any questions should you have any.

Best,

E.

Thank you all for replies. At the moment the UC has settled to a manageable 4/5 times a day so he is in no rush to have the surgery which surgeons have said is reversible depending on the condition of the liver. Im not sure if thats very good though as there is small duct psc present aswell as in the cbd. The fact that the bowel can weaken is my worry too but he prefers to not think of what might happen, more so lives day to day.
He was in good form since having stent changed he had 2 put in instead of 1 to try keep the duct open as balloon dilation didnt work. They will try dilation again next month and hopefully that will work. The last few days we have been keeping a close eye on temp as its reaching over 100 and he has tenderness around the pancreas, hoping it will pass …

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.