Hi Pam. Hope things have continued to go well for your son. My son just got results from his colonoscopy showing basal cell atypia but not yet determined to be dysplasia. It is in the descending colon and rectum. Because there is an ESD expert at his GI practice (Johns Hopkins), they will look at this option when they do the Chromoendoscopy. Was your son treated at Hopkins or someone else? Just curious in case we need a second opinion.
My son had his ESD in Boston at Bringham. His expert was Dr. Aihara. He got trained on this technique in Japan (I think my son mentioned that).
Could you tell me what dye they use at John’s Hopkins for Chromoendoscopy? Is it Methylene blue or some other dye and at what concentration (if possible)? Thanks.
One question we are looking an answer for but no one is there to answer is: would increasing the dose of Vanco help in this situation? Is it some microinflammation that is causing dysplasia?
Pam: Thanks so much for getting back to me. Our GI said she is using blue dye for the Chromoendoscopy. I will ask her if it is the blue you mention or indigo carmine… His chromo is scheduled for April 11. Thanks for mentioning the dye in your reply. The NIH has a paper on this topic. The ESD specialist at Johns Hopkins trained in Tokyo, Japan as well. The Vancomycin question is interesting. My reading implied that the inflamation caused in the first 8 to 10 years of having UC is what causes the abnormal cells. Having PSC just adds to the risk of having dysplasia. Like your son, my son have moderate to severe UC before Johns Hopkins put him on Vancomycin which was a game changer. He takes 125mg twice a day. And I felt your pain He has only been on Vanco for 21/2 years and I was hoping living a normal life would last a while. I am hopeful about the ESD and thanks for sharing that with us. I was glad to see Johns Hopkins had an ESD specialist. Fingers crossed he will avoid having a colectomy for the time being. Best wishes to your family.
zmo,
For some reason I didn’t get notice of your reply and just saw it, sorry for the delay.
I’m glad your son is under the care of a well trained ESD specialist. Wish you all the best.
With regard to the dyes, from my reading there are some concerns with the use of methylene blue but it’s controversial as some facilities continue to use it while others opt for Indigo carmine.
On another note, my son was also diagnosed with hypothyroidism in 2015 which recently turned into hyperthyroidism. It seems it’s Graves’ disease. This development is worrisome because the medications for it would impact liver. Additionally, he is not getting appointment with an endocrinologist until September. I wonder if any one in the group has Graves’ along with PSC/UC, who can comment on this?
Thanks for the response. Sorry to hear that your son is now dealing with Graves disease. I asked about the dye and there is a shortage or they stopped producing indigo carmine. They have a synthetic indigo carmine but Johns Hopkins switched to Methylene Blue when they could no longer get the indigo carmine. They have not tried the synthetic indigo carmine so we are stuck with Methylene Blue for the chromoendoscopy next week. I will ask about the concentration. I assume if my son (age 24) qualifies for ESD then they will use the dye again. Is that what happened with your son?
Thanks Jeff. I am sure we will have a ton of questions if he has to go this route. It sounds like you have a j pouch since it was in two stages. Since my son is 24 he would like to have a j pouch but his doctor is recommending against it because of the high risk of pouchitis.
zmo,
In my son’s case, we didn’t want to use Methylene blue but at Bringham in Boston they don’t use any other dye. I recall reading
the following paper: http://dx.doi.org/10.1016/j.vgie.2017.11.004
Here Dr. Picco mentions (on page 38) due to shortage of Indigo carmine they use FD&C Blue No. 2 sterile powder, which is chemically identical to Indigo carmine. Further he describes how they dilute it etc.
With regard to your question about use of dye again during ESD, this is what he said earlier to someone else’ question: “I’d discuss with his current doc and the doc he plans to do ESD with if they should tattoo the borders of the polyp from chromoendoscopy. Tattooing/biopsies can interfere with the ESD procedure, as the skin around the polyp is made more brittle as a result. The ESD is tricky, even Dr. Aihara wasn’t sure if it was going to be successful when he put me under, he said if he feels it’s not operable, he won’t do it.”
I hope this was somewhat helpful.
Thanks Pam. I sent this to my son’s doctor. We may have to postpone Chromo since my son takes a drug that may cause toxicity with Methylene Blue. So glad we checked for this. He would need to be off the drug for two weeks and the Chromo is scheduled for next Thursday. Hoping they can use the compound discussed in the paper you sent me.
Thank you so much for all your information. I feel we are in a better position with the knowledge you shared with us. Best wishes,
Pam:
It ends up he will have a virtual Chromo so no dye is used. Fingers crossed things will go well next Thursday and he will be able to have ESD and not a colectomy.
Best,
Joyce,
I’m glad your son’s doctor caught in time about the drug interaction with MB. If you don’t mind sharing the name of the drug could you let me know or if you feel more comfortable you can PM me.
My son’s GI at Boston Bringham decided at the last moment to not go with Chromo with MB, instead went with NBI (Narrow Band and Multiband Imaging). Is virtual chromo same as NBI? Although you might have read this paper which discusses Chromo and NBI, I thought I’ll draw your attention to it, it’s a good read:
The drug interaction was with sertraline but really any drug that increase seratonin is a problem. And yes, the virtual chromo seems to be the same as NBI. thanks again.