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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Colectomy with UC and PSC

Hi,
Just wondering if anyone has any advice or has had similar experience with uc and psc .
My husband’s uc has been flaring for the past yr, cannot take steroids as they caused fluid collections in the pancreas. He has had 2 hospitalizations for pancreatitis. He has a stricture in the cbd which is stented by ercp. He had a stent change xmas week and they will bring him back soon to try balloon dilation instead of stenting, the last one was becoming infected.
The docs now strongly advise colectomy as the ony way forward but my husband is strongly against this. He is trying homeopathy and the uc has improved slightly to approx 6/ 7 times/day and his appetite and energy is improved which i feel is a combination of homeopathy, diet and opening up of bile duct.
My worry though is that would my husband be better going ahead now with a colectomy as the longer he continues will he not just be further weakening his system and maybe still need a colectomy. Is it just putting off the inevitable?
Thank you for reading my post…

Hi,
My heart goes out to you and your husband. While I can’t say what is best for your husband, I can tell you about my own exerience with my daughter. She tried every medication for UC and some worked for a while and the biologics may have given her vasculitis. She lost the vision in her left eye. She cushings disease, portal vein thrombosis, kidney stones, and pancreatitis. She finally gave up and had her colon removed and it literally gave her lif back. She has absolutely no regrets. That being said,her PSC is very mild - probably just because she is in early stages. I am just grateful that if it does get bad she won’t be dealing with the illness of UC on top of it. God bless you and your husband.

Hi there,

Would your husband consider using Oral Vancomycin?
The immediate positive effects of using Vanco are seen on the UC symptoms (speaking from my daughter’s experience diagnosed with PSC+UC almost 5 years ago).
My daughter also went on the SCD (Specific Carbohydrate Diet) diet for a while in 2013 (8 months), with improvement in the UC symptoms but no change (even progression) on the PSC.
Oral Vanco kept my daughter PSC and UC under control. Fibrosis in her liver resolved and at the last colonoscopy this January, no sign of UC.

All my best wishes,
Daniela

Thank you both for taking the time to reply. The doctors havent mentioned vanco at all, maybe its not available in Ireland? Ill definitely ask at his next appt. It sounds like it would be worth trying.
As you say it would be wonderful to have one illness out of the picture so to speak and just try to get to grips with the psc. My husband was only diagnosed with psc at xmas 2017 but the bile ducts in the liver are all showing signs of psc and also the stricture in the bile duct is quite large.
I hope both your daughters have many trouble free years ahead of them snd thank you for your kind wishes.

My daughter was the first case in IRL who would have tried oral Vanco for her PSC and UC (as per Dr. Cox’s protocol). Initially, doctors did not want to prescribe Vanco, and we bought it privately from Romania. After the LFTs normalized, liver fibrosis resolved and the symptoms of UC dissapeared the doctors here in IRL started to prescribe it. Please email me privately to give you the details. Forgot to specify, I live in IRL, and my daughter is only on Vanco for her PSC and UC.

Daniela

That sounds amazing, do you mind me asking if your daughter is seeing Prof.McCormack in St.Vincents and how do you find him if she is? This nightmare started xmas week 2017 and has been up and down constantly since then. Im going to speak to my other half and see what he thinks thank you so so much it makes me feel like there are options even though we’re not being told them. Maybe we neee to push harder…

Homeopathy does nothing

I can only say what we have seen in our own home. Any research would say theres no firm evidence to say it helps or works but my husband has seen a definite improvement since using it, going from 10+ bowel movements to 6/7. We’re not totally naiive in that we believe coupled with the fact that the bile duct has been restented and the use of homeopathy the uc is improving.

Vanco is a great idea. I also recommend he have his stent removed. My doctor is a PSC specialist and according to him, stents should not be used to open in bile ducts. If a stent is used, it must be removed in a few weeks. Stents cause bile duct infections, which can become blood infections.
I am sorry you and your husband have to go through this ordeal. I hope he will find relief with Vanco.

Thank you Jennifer, they are going to remove the stent in feb and see if balloon dilation will work to keep the duct open. Hopefully it will be successful! Is it true though that Vanco is only beneficial in early stage psc. Our docs havent even told us what stage he’s at although all his small ducts in the liver show psc and the cbd has a large stricture. Maybe Vanco wouldn’t be suitable for my husband?

Worriedwife,
How long has stent been in? You say there’s a stricture in common bile duct. Why hasn’t that been cleared?

Mark

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 …