Will most likely need to get proctocolectomy since it is everywhere. We are getting a second opinion but it doesn’t look promising. If anyone has had this surgery in the Washington DC Metro area and were happy with their surgeon please let us know who you used. We are meeting with the Johns Hopkins surgeon on Wednesday. FYI, the first pathology report after the Chromoendoscopy did not diagnose the crypt cell dysplasia but the second report did and said it was in all parts. Oxford Academic has an article on "Increased Risk of Non-conventional and Invisible Dysplasia in Patients with PSC and IBD. My son’s colonoscopy in February was indeterminate for Dysplasia in two sections of the colon… The Chromo in April showed the crypt cell dysplasia in all parts and was classed as High Grade. Thought you all should know that this is easily missed and that is why there are several recent papers on non-conventional dysplasia.
Anyway, my son good use some luck so I am hoping for a great surgeon. We are doing our research but if you have any recommendations that would be great. Also, he is 24 so what are your experiences with a J pouch?
ZMO’s mom,
I have had my jpouch since 2006. It takes some getting used to. First things first. If the doc want to do the jpouch in three steps, do it. I had it done in two and it kicked my $%^$%. Life with a pouch is not perfect. There can still complications from getting used to it, can be a high number of bathroom trips, pouchitis…but it beats using a bag to poop in anyday of the week. His diet would generally be unrestricted, mine is but my brother has trouble with tomato’s. Having a good night’s sleep can be hard to have as there will likely be at least one poop in the middle of the night. So, all in all, I am pleased with my jpouch, but it is not perfect.
Jeff
Thanks Jeff. Looks like both parts of the rectum has high grade dysplasia. We are getting another pathology opinion. He may not be able to get J bag because of high risk of cancer in the remaining part that they would have to leave in to do a j bag. Thanks again.
Hope the appointment on Wednesday went as well as possible, given the circumstances.
Could you perhaps share links to these papers you mention above? Much appreciate this!
And, question to you and others following: Are you and others saying that even if dysplasia is present and dozens of biopsies are taken during colonoscopy and analyzed for dysplasia, it would not be SEEN if not for the dye used in Chromoendoscopy???
These are the links to the articles. I can’t seem to make it so you can just click on the link.
Basically, these non-conventional and invisible dysplasia are being missed by pathologists that are not trained to recognize these non-conventional dysplasias. The invisible dysplasia is only caught by random biopsies. They are invisible even when using chromoendoscopy. Our GI did not see any visible lesions. Also, our GI used blue lights I believe and not the dye as the dye available, methylene blue, can create issues also. I hope this helps. Everyone with PSC-UC should ask if the pathologist reviewing the random biopsies is trained to recognize these non-conventional and invisible dysplasia. We went from no dysplasia to citing two atypia areas to high grade dysplasia everywhere within one year. And the first chromoendoscopy pathologist report came back with no atypia because the pathologist wasn’t trained to recognize this type of dysplasia.
Hi Zmo’s,
I had my 1st colonoscopy bag at 28 and had it redone in 2020 after having my rectum removed due to chronic fistulas. After spending time in the hospital my doctor told me they biopsied my sample and it came back as “high grade II/III dysplasia. I thought the rectum was out and all was well. I then found I had PSC in 2023.
Fast forward to a few months ago after seeing my Urogyn who saw some changes to the skin in that region. She sent me back to my colorectal surgeon who did the surgery in 2020.
I’m now recovering from surgery where they removed the last of everything. My biopsy came back clear.
I am not sure if this helps but wanted to share a bit of my story with you.
Take care…