My son was diagnosed with PSC/UC (2001/2002). He has been on various UC medications over the years to control his aggressive UC. From 2015, he tried various biologics like Remicade, Entyvio, Stelara then Humira. Since 2018, he has been on Vanco and Xeljanz which gave him total control/relief from UC and normalized his LFTs. On March 10th ‘20, he had colonoscopy which shows low grade dysplasia (LGD) in hepatic flexture. In 3 months, they plan to do a chromoendoscopy. Having PSC may complicate things further. I would like to hear group members’ experiences in similar situation. What options he has going forward.
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Pam, welcome back.
I have no experience with this, so I hope we have some members who can share their experiences.
Jeff
Thanks Jeff, I’m hoping that some one can comment on it. My son was doing well after 16-17 years of constant struggle with UC so this news hit us when we least expected. First thought was that it’s low grade so not that bad but the following resource differs:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5359934/
“They found that among their patients with low-grade dysplasia, previously thought to be fairly innocuous, 54% progressed to high-grade dysplasia or cancer at 5 years. …found that among patients with low-grade dysplasia who underwent immediate colectomy, 3 of 16 (19%) had cancer when their colons were removed and examined. With the publication of these two studies, the pendulum of opinion swung to the idea that low-grade dysplasia was something considerably more dangerous than originally thought.”
My colonoscopy two years ago found LGD. We’ve been monitoring it in annual colonoscopies. Last spring my Gastro removed the area during the colonoscopy. I am scheduled to have a follow-up in early May, but who knows if that will be possible. So, I am just living with it and hoping it does not morph into cancer. From what I read shortly after they found it, the risks of it becoming HGD/cancer are much lower than what was cited above, under ten percent. But I’ll have to go through my (paper) files to find these studies. Let me know if you want me to do this and tomorrow (Sunday), I will have time.
I don’t think having PSC effects the treatment although of course it significantly increases the risk of getting liver and colon cancer.
Best of care,
Susan
I appreciate your response. You were very helpful when I was looking into Vanco treatment for my son.
I am sorry to know that you were diagnosed with LGD two years back. I am surprised to know that they were able to remove the area during regular colonoscopy. Could you share what area of colon was the LGD found? My son’s GI mentioned doing a resection. Did they do Chromoendoscopy for you at any time? I will take you on your offer to find the information. To keep LGD in check, do you take any supplements/diet etc.?
Thanks
Pam
Hello,
I was diagnosed with ulcerative colitis in 2017, then PSC in 1/2019. Recently in 1/2020, I had a colonoscopy which showed multiple areas of high grade dysplasia in the rectum. I got multiple opinions and all recommended I have a total proctocolectomy (removal of colon and rectum) with end ileostomy. I am also a physician myself. I just had the procedure on 3/5 and am recovering well. My UC is cured and the rectal ca that they found is also cured. I dont have to do any chemo as there was no spread to lymph nodes. The ileostomy is not as big of a deal as I had feared. PSC with UC carries an increased risk of colon and rectal ca. Given your son’s is low grade dysplasia, i doubt they will do such a radical approach as mine with the high grade dysplasia. All I will tell you is get frequent colonoscopies as if it progresses, it will progress quickly as mine did. 6 months prior to my recent coloscopy, there was no dysplasia. In 6 months, there developed a high grade dysplastic polyp. I dont want to scare you, but please seek multiple opinions. If cleveland clinic or mayo is an option then seek those opinions also. You want to be ahead of the game on this as if it progresses to a mass or invasive carcinoma, then the outcomes are much worse.
Dear Pam,
I’m sorry for the passing days without responding. I’ve been dealing with a dental abscess etc.
I too was surprised she removed it, in the second year monitoring colonoscopy. The question being of course, did she get it all? It was/is in my ascending colon.
No, I’ve not had the chromoendoscopy. I chose not to.
The Vancomycin had healed half my colon as of last spring, the entire descending colon.
Yes, I take a lot of supplements for my liver and colon.
I eat mostly all organic and local, free range, etc.
Best of care,
Susan
https://www.cghjournal.org/article/S1542-3565(16)31124-7/fulltext
Here is one, Pam.
After you read these, please let me know your thoughts.
Hi aknahata,
Thank
you for your reply. The information you provided is very useful to us and will
help us making decisions going forward. I’m sorry that you had such a rapid
progression but it seems like you made the right decisions in a timely manner. In
my son’s case his options will be clearer after the chromoendoscopy which would
be in about 3 months from now. Last year a couple folds existed and appeared
slightly nodular in the hepatic flexure whereas this year they found LGD in the
same region. These dysplastic cells are in a flat wide area, so it’s not like a
polyp that can be removed. My son says his GI was hinting towards resection of
the area. On the issue of getting multiple opinions I would have to check with
my son whether his insurance would cover it. Currently, he is working in Boston
area. We used to take him to Mayo Rochester until 2008 for the PSC when he was younger and covered under our insurance.
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Thanks Susan. I’ll look in to these and forward to my son as well. I understand you couldn’t reply earlier it’s hardly any delay. Appreciate your help even though you are having dental problems.
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I am sorry to hear that your son has UC and on top of that LGD. How old is he? I had UC from age 9, so I have first-hand experience with the struggles of going through grade school and high school years with that disease.
My experience re Low Grade Dysplasia is that I had a few instances of that crop up over a period of a few years, then an instance of High Grade on one scope. If I remember right, after the Low Grade showed up, my GI wanted me to do colonoscopies every 6 months, rather than annually. Once the High Grade patch showed up, he recommended I have a colectomy. At that point I had had UC for about 45 years, so my risk was sky high – that will likely be very different for your son.
When he got in there, the surgeon decided to leave a 8-10 inch section of colon, the region with the least scarring. This meant that I returned to pretty manageable bowels for the next few years. Then HGD showed back up again in the remaining section, and I had the full colectomy and j-pouch surgery a year and a half ago. That’s been a process to get used to.
I give this info to you to give you a sense of what the path might look like for your son. His timing will likely be very different – I’m guessing a much longer time frame. It was a huge factor at each step of the way, that I had had the UC for so long. My GI was concerned that there was so much scarring and twisting in my colon by that time, that it was impossible to get a look at everything, and he was worried that he would miss something if we continued the path of just monitoring every 6 months, for example.
What I understand from my experience:
First, as I understand it, LGD is fairly low risk, and just needs to be monitored. Of course your son’s GI will have recommendations.
Second, the chromoendoscopy is a good idea, as I understand it gives a clearer picture of what’s going on. When they find dysplasia, it is by doing kind of random biopsies, usually targeting areas which look diseased, but… they can’t always see dysplasia in regular light. The chromo thing is like a black light, making diseased areas glow and show up much more clearly.
Third, get second opinions before taking big steps like surgery – as long as it isn’t going to bankrupt you. At least with our insurance they were paid for just like the first opinion was. And if it gives you peace of mind about what your Drs are recommending, my view is it’s worth it. You might get a different perspective than your Dr is giving you, which helps you understand more what the options are, or you might get the same recommendation, in which case it is possible to go ahead with more confidence – and look back at the decision you made without second-guessing if it was the right thing.
Fourth, just take everything one step at a time. I don’t know how long the average time between when LGD and HGD show up, but in my case it was years, and I’m guessing that the progression for me was faster because I had had UC for so long.
Fifth, ask lots of questions. The answers may or may not be hard to hear, but in my experience it was always better than the unknown, and having my brain fill in one disaster scenario after another.
Thinking and praying for you and your son.
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Bob, great advice.
UC for 45 years? Wow. I had it for about 14 months and then they yanked out the large intestine.
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Hi Bob,
My apologies for a late reply. Thank you for responding and giving details on how things progressed with you.
You had UC for 45 years from age 9, that’s a long time, basically missing out large part of your life. My son who is now 37, had PSC diagnosed at age 18 although I think it started at age 16 when wrong antibiotic damaged his liver, he developed UC soon thereafter. He has had aggressive and difficult to manage UC until he started Vancomycin/Xeljanz treatment two years back.
From your reply I couldn’t figure out whether you also have PSC. From the available data, the risk is higher for someone having PSC/UC compared to UC alone.
Reading about your experience after the resection, it is comforting to know that your bowls were manageable. If you don’t mind answering, what was the frequency and consistency like? The reason I’m asking, his GI had hinted of resection in hepatic flexture.
It is heart breaking that after all those years of dealing with UC when the quality of his life improved following the Vanco/Xeljanz treatment, this news hits him. His previous colonoscopies showed that his colon was healing well with this treatment. Prior to Vanco treatment, he tried Biologics. In 2013/2014 he did Fecal Microbiota Transplants (FMTs) for 10 months which were the only thing back then that could control his UC. At that time, his LFTs also normalized and he was able to come off Prednisone (which he wasn’t able to do for 14 years prior to FMTs). He started a new job and stopped FMTs. His LFTs started creeping back up and UC came back. Only Vanco/Xeljanz has helped him thereafter.
I wonder how microbiota can impact the development of LGD.
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Hi Pam,
My partner (33 year old man) was in a very similar situation to your son. He had LGD seen on colonoscopy. He has probably had colitis for many years but was just diagnosed in 2016. His doctors (at a specialty IBD academic centre) recommended colectomy with J-pouch after the LGD was diagnosed due to the risk of cancer in the setting of PSC. It wasn’t a totally unanimous recommendation, though, and when I looked at the literature there wasn’t great evidence for colectomy vs. surveillance.
Anyway, my partner had his colectomy in 2018 and ileostomy reversal in April 2019 and is now doing well. Interestingly, some symptoms that we didn’t think were related to PSC-UC (excess sweating and low back pain) disappeared or improved after his colectomy! His PSC has been stable too.
Anyway, please let me know if you have any questions and all the best to your son!
Katie
Hi Katie,
Thank you for your input in this matter. It’s good to hear that he is doing well with J-pouch and his other symptoms resolved. I am wondering did he have really mild UC symptoms before 2016 that it wasn’t diagnosed?
Post colectomy, did they check his colon to see if it had dysplasia anywhere else that they didn’t see during colonoscopy?
Did he have any inflammation in his colon at the time they found LGD?
Even now, in the case of LGD there is no clear guidance between surveillance and coloctomy.
Pam
Hi Pam,
Yes, my fiancé (Mike) had very mild symptoms prior to 2016, like indigestion, probably since his late teens or early twenties. He also had anemia the year before he started showing symptoms (and likely longer). His UC symptoms completely resolved with mesalazine. The inflammation in his colon was always mild on colonoscopy including when the LGD was found. That being said I think that he had a biopsy that was indeterminate for dysplasia basically from the first colonoscopy with extensive biopsies he had done, meaning that the dysplasia had probably been there awhile. Interestingly, even though there wasn’t much inflammation seen on the scopes his surgeon commented that his colon felt “sticky” when she removed it, which she attributed to PSC-related damage?
Unfortunately I don’t have access to his pathology reports so I don’t know if there was more dysplasia found or the degree of inflammation. I do know that everything was “fine”, meaning that there was no cancer. I also heard from an IBD doctor recently that sometimes there is no dysplasia found in the colon even if there was dysplasia found on biopsy?
As I’m writing this, I actually remember that part of the reason they ended up recommending colectomy was for the risk of concurrent unidentified cancer in the colon in the setting of LGD in PSC-colitis.
Mike has had pouchitis, but is doing very well on antibiotics and can live a normal life. He is totally continent, has no pain or discomfort, and only has bowel movements about three times in 24 hours. The thing that annoys him the most is having to get up once at night a few times per week to empty his pouch. He also has to be careful about using barrier cream to reduce irritation.
However, even though Mike is doing well now, we know that J-pouch function in PSC isn’t always great, and because his colitis was under such good control, I almost wish we had been given more opportunity for shared decision making around the colectomy. I was all for the colectomy as soon as I heard about the cancer risk, and I also felt that he should have major surgery now while his health is good, rather than having a colectomy years down the road when his liver function potentially deteriorates.
However, now that it has been two years, I can look at the evidence more objectively and see that, as you mentioned, there is no strong evidence either way for colectomy in PSC patients with LGD. I also wonder if the J-pouch function depends on the severity/stage of PSC. Mike’s PSC was diagnosed incidentally on a CT scan done for another reason and he has normal ALP and liver function. He is also fortunately asymptomatic (though I know all of that can change).
Anyway, I am happy to answer more questions! My email is bingham.katie.bingham@gmail.com
Take care,
Katie
Hi Pam,
Yes, my fiancé (Mike) had very mild symptoms prior to 2016, like indigestion, probably since his late teens or early twenties. He also had anemia the year before he started showing symptoms (and likely longer). His UC symptoms completely resolved with mesalazine. The inflammation in his colon was always mild on colonoscopy including when the LGD was found. That being said I think that he had a biopsy that was indeterminate for dysplasia basically from the first colonoscopy with extensive biopsies he had done, meaning that the dysplasia had probably been there awhile. Interestingly, even though there wasn’t much inflammation seen on the scopes his surgeon commented that his colon felt “sticky” when she removed it, which she attributed to PSC-related damage?
Unfortunately I don’t have access to his pathology reports so I don’t know if there was more dysplasia found or the degree of inflammation. I do know that everything was “fine”, meaning that there was no cancer. I also heard from an IBD doctor recently that sometimes there is no dysplasia found in the colon on pathology even when LGD was seen on biopsy, and I am not sure what to make of that.
As I’m writing this, I actually remember that part of the reason they ended up recommending colectomy was for the risk of concurrent unidentified cancer in the colon in the setting of LGD in PSC-colitis.
Mike has had pouchitis, but is doing very well on antibiotics and can live a normal life. He is totally continent, has no pain or discomfort, and only has bowel movements about three times in 24 hours. The thing that annoys him the most is having to get up once at night a few times per week to empty his pouch. He also has to be careful about using barrier cream to reduce irritation.
However, even though Mike is doing well now, we know that J-pouch function in PSC isn’t always great, and because his colitis was under such good control, I almost wish we had been given more opportunity for shared decision making around the colectomy. I was all for the colectomy as soon as I heard about the cancer risk, and I also felt that he should have major surgery now while his health is good, rather than having a colectomy years down the road when his liver function potentially deteriorates. However, now that it has been two years, I can look at the evidence more objectively and see that, as you mentioned, there is no strong evidence either way for colectomy in PSC patients with LGD. I also wonder if the J-pouch function depends on the severity/stage of PSC. Mike’s PSC was diagnosed incidentally on a CT scan done for another reason and he has normal ALP and liver function. He is also fortunately asymptomatic (though I know all of that can change).
Anyway, I am happy to answer more questions! My email is bingham.katie.bingham@gmail.com
Take care,
Katie
Katie,
I’m going to send you few questions on your email. Thanks.
Pam
HI!
I had low grade and high grade displasia, resulting from my UC/Chron’s which developed into cancer. I was on and am on Entivio. I was booked for a total proctocolectomy. I was told that it usually helps to quiet down the PSC. So colectomy is a great solution for many people to find better health and to improve the PSC and to completely remove any problems with your colon.
All the tests I have had done have not had any problems from my PSC. The only issue I had during testing was a bowel perforation once because of an agressive polop removal. I recovered in a week.
For myself, I went onto the SCD diet, which has sent my crohn’s into remission, improved my liver markers, and I no longer have cancer. I get to keep my colon for now, possibly for a long time. But if they decide to remove it I think that;s an excellent option too.
So I recommend trying the SCD diet for a month and see if it helps. I also would say don’t freak out, solving issues with the colon, even by just taking it out, also helps solve issues with PSC.
Best of luck!!
I have had