My adult son (with PSC and UC) has been on Vanco for almost two years now. Since starting Vanco UC has been under control, but prior to that, his UC had been very aggressive for last 14 years even after taking high doses of steroids and several biologics. This March, his GI found some low grade dysplasia (LGD) in part of his colon (hepatic flexture). Because of the LGD, in case his GI recommends colectomy, we are wondering how effective Vanco would be in treating PSC? Does any one have experience with taking Vanco after colectomy or resection? I’ll also appreciate any thoughts or information on this (how Vanco would work in absence of colon to exert its effect on PSC)?
Hi Pam, I try Vanco for my PSC after my full colectomy for only a few months without any change on my liven enzymes, so I didn’t try anymore. I’m now with three months after my Tx and I’m recovering with my liver enzymes in the normal range not itching and no yellow color.
I’m so sorry for the colectomy — but sounds necessary. The OV will still help PSC progression post colectomy. The gut microbiome that promotes and is connected with the liver inflammation does not change with a colectomy. Email me if you want more information. The key now is to prevent a liver transplant and rPSC. He will need to take OV for longer than a few months after the colectomy.
Hi Pam,
I had a colectomy in January 2019 and was on Vanco before it and continued after. When I first started it my numbers dropped significantly and they have stayed pretty steady. I don’t think there is any issue with staying on it post colectomy. My gi, hep and surgeon were all ok with it. My PSC is a little further along and I have some cirrhosis so I am not getting the results that an early diagnosed person might get from it but it has kept the disease pretty steady. I was dx in 2001. Prayers for your son!
Traci
Thank you luiscar. I am sorry it didn’t work for you after full colectomy. How many months did you try it and was it one of the brands that most see results with?
Cactusgirl, I sent you a message. I am so relieved to know that Vanco will still help PSC post colectomy. We will know today what his GI recommends whether to have surveillance or resection or full colectomy.
“Because of the LGD, in case his GI recommends colectomy…”
Did you mean to write high grade dysplasia?
Do the risks of LGD warrant such an aggressive approach?
My gastro is monitoring my area of LGD via colonoscopy every year or year and a half. My understanding is the risks of LGD morphing into HGD is low (under 20%).
I had to delete my previous reply.
Thank you Traci. Good to know that post colectomy Vanco is still working. I’m sorry you had colectomy. So you were taking Vanco even before colectomy, did it not help your UC?
In my son’s case he started Vanco (in 2018) mainly to control his UC (along with PSC) and his UC got under total control with it and we were happy to see him enjoying quality of life after 15 years of suffering. But then last year they saw some nodular areas in one region of his colon which showed low grade dysplasia this year.
He was diagnosed with PSC around 2001 and UC a year later.
SusanG, no it is LGD. He thinks his GI might recommend colectomy if not resection.
He had Chromoendoscopy in June first week and results are similar to what was in March, three months ago. Since March end he started Curcumin and Resveretrol in hopes to reverse dysplasia.
Good news is they stained for p53 which is still staining as wild type so p53 is not mutated. But they found two polyps in his transverse colon which obviously developed after March colonoscopy. Those polyps were flat and hyperplastic. Pathologist’s comments are:
"COLON POLYPECTOMY, TRANSVERSE #2:
Polypoid colonic mucosa with prominent hyperplastic changes, indefinite for dysplasia (see note).
Note: Multiple levels are examined. A p53 stain demonstrates a wild-type staining pattern.
D. COLON BIOPSY, HEPATIC FLEXURE NODULAR AREA:
Colonic mucosa with low-grade dysplasia (see note).
Note: The findings morphologically resemble those observed in the prior biopsy from this site (see S20-17509). A p53
stain demonstrates a wild-type staining pattern."
I don’t know if I am allowed to post his full results here but I can message you privately if it’s ok with you. How long have you had dysplasia and have they seen any changes like crypt architectural disarray" or “hyperplastic changes” in mucosa or tissue like his case?
List item[quote=“Pam, post:10, topic:3921, full:true”]
SusanG, no it is LGD. He thinks his GI might recommend colectomy if not resection.
He had Chromoendoscopy in June first week and results are similar to what was in March, three months ago. Since March end he started Curcumin and Resveretrol in hopes to reverse dysplasia.
Good news is they stained for p53 which is still staining as wild type so p53 is not mutated. But they found two polyps in his transverse colon which obviously developed after March colonoscopy. Those polyps were flat and hyperplastic. Pathologist’s comments are:
"COLON POLYPECTOMY, TRANSVERSE #2:
Polypoid colonic mucosa with prominent hyperplastic changes, indefinite for dysplasia (see note).
Note: Multiple levels are examined. A p53 stain demonstrates a wild-type staining pattern.
D. COLON BIOPSY, HEPATIC FLEXURE NODULAR AREA:
Colonic mucosa with low-grade dysplasia (see note).
Note: The findings morphologically resemble those observed in the prior biopsy from this site (see S20-17509). A p53
stain demonstrates a wild-type staining pattern."
I don’t know if I am allowed to post his full results here but I can message you privately if it’s ok with you. How long have you had dysplasia and have they seen any changes like crypt architectural disarray" or “hyperplastic changes” in mucosa or tissue like his case?
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Pam I don’t recall quoting you. I’m sorry when I read it I’m not recalling it. I have no idea what is being discussed. A little above my comprehension. Sorry. I’ll go back and try to figure our team where the mishap occurred
I went back and it looks like I quoted you twice. I wasn’t trying to answer you. I have no idea why it is repeated twice by me. Because I’m not used to posting on this site, I must have done something accidentally. I apologize and can’t understand what happened.