Leslie,
Glad you’re in a good place. Dealing with both UC and PSC can be traumatic.
Jeff
Hi Leslie,
Thank you for the information. I am glad that you were able to address these serious issues.
Regarding the perforation, was the polyp flat and/or deeply embedded and was ESD or EMR technique used?
I am wondering if SCD diet alone helped with cancer? Didn’t you need chemo? Your doctor must be monitoring your colon more frequently. Also wanted to know, how did your GI establish that the cancer is gone? Trying to get some insights.
Pam
Three years later and gastro continues to monitor LGD. I am now having colonoscopies annually. I’ve had no surgery. This morphing into HGD/cancer is always in the back of my mind especially as I have UC and PSC and my mother had colon cancer. But, so far, so good. And, Vancomycin has significantly healed my colon.
Susan, I have my fingers crossed for you.
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Thanks so, Jeff.
@Pam Any updates on what your son decided to do? I am facing a similar situation with some invisible LGD on one biopsy that we have been monitoring for about a year and a half and now another spot of LGD on a polyp (both on the ascending colon). I am considering different options including subtotal colectomy (my colitis is inactive in the rest of my colon), continued monitoring + possible resection of the dysplastic polyp, and total colectomy (I would really like to avoid this option).
They only recently caught my PSC and it seems to be doing well on Vanco and I’m also in the Primis Study (FXR agonist).
Hi CodyL,
For how long have you been on Vanco?
I’ve been taking it for almost a year now. When I first started it my liver enzymes normalized in 3 weeks!
CodyL, my apologies I didn’t see your posting until today. I will dig out the info and reply to your query tomorrow.
Hi CodyL,
I am sorry to learn that you are in this situation. My son took couple of second opinions from Cleveland and Mayo clinics, there recommendations were total colectomy. His surgeon was suggesting subtotal colectomy where he would have left part of the sigmoid colon to maintain functionality. However, someone in this group suggested to seek another opinion from a GI consultant. He did his GI fellowship (training) at Mayo Clinic under Dr. Keith Lindor. He is also quite knowledgeable about the use of Vanco as a PSC treatment. So, we consulted with the consultant. He looked at colonoscopy findings and recommended that we consult an ESD expert who was right there in the same area my son lives. The EMR/ESD expert was highly recommended by the GI consultant due to his training in Japan for the procedure. The expert recommended ESD procedure after assessing the latest Chromoendoscopy and colonoscopy images. So, my son followed his advice and had the LGD removed by the ESD procedure. Subsequently, six months later, he had a follow up colonoscopy that was clean.
I hope this is helpful to you. If you would like to consult with the GI expert who can look at the details of your case and give his opinion, feel free to PM me. In hind sight, we feel fortunate that we consulted with the GI expert.
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That’s so excellent, Pam!
Susan
Hi Aknahata. I hope you are well. My son (age 24) is in the same spot as you were with the high grade dysplasia suddenly showing up in all parts of the colon and rectum. We saw that peristomal varices is an issue with the ileostomy. Do you worry about that or have any guidance you can share with us.
Thanks.