Unexpected finding on colonoscopy-low grade dysplasia-need advice

My UC has been very well controlled for more than 18 months. Other than looser-than-normal stool, complete remission. So I wasn't expecting my doctor to find dysplasia during the colonoscopy I had on Monday.

I wasn't due for my biannual colonoscopy for five months but I needed an endoscopy and asked that he do the colonoscopy at the same time so I wouldn't need to be put under anesthesia twice. Ironically, the endoscopy was completely normal but he found "focal low grade dysplasia/adenomatous changes" in my left colon.

He also found issues in the ileum which could be backwash ileitis but calls into question whether I have UC or Crohn's.

My doctor wants me to repeat the colonoscopy in three months and have a Prometheus test to help determine whether it's UC or Crohn's. He doesn't believe the test is 100% reliable but says it's a useful data point.

Of course, we discussed that the dysplasia may lead to my colon being removed. I didn't expect to have that conversation for many years since I've been doing so well!

Anyway, has anyone experienced this and waited the three months to re-scope before proceeding? Should I be researching other options? What should I be thinking about?

I know that dysplasia doesn't automatically mean my colon has to come out but I'm a risk-averse person, and the mom of a first-grader, so I wouldn't feel comfortable with a long-term wait-and-see approach. My doctor's at a University of Chicago-affiliated hospital and would refer me to top surgeons so I'm not worried about having to find a good surgeon.

For anyone who's interested, the diagnosis and notes are below.

Thanks.

FINAL DIAGNOSIS:

A) Duodenum, biopsy:
- No diagnostic abnormality.
B) Gastric antrum, biopsy:
- Antral and fundic type mucosa showing no diagnostic abnormality.
C) Ileum, biopsy:
- Active ileitis, mild.
D) Right colon, biopsy:
- No active colitis identified.
E) Transverse colon, biopsy:
- Focal active inflammation with inflamed granulation tissue.
- One fragment compatible with hyperplastic polyp.
- Multiple fragments of unremarkable colonic mucosa.
F) Left colon, biopsy:
- Focal low grade dysplasia/adenomatous change. See comment.
- Small tissue fragments showing active inflammation.
- Multiple tissue fragments showing mild crypt distortion, negative
for inflammation.
G) Rectum, biopsy:
-
Multiple tissue fragments showing mild crypt distortion, negative
for inflammation.

COMMENT:
F) Clinical correlation is necessary to determine whether a focal
lesion was identified during the endoscopic procedure. The area of
dysplasia has no associated inflammatory reaction. This specimen
underwent intradepartmental Quality Assurance review.

If the dysplasia isn't bad it can be monitored on a more frequent basis to see if it worsens. Sounds like it isn't an emergency, you have some time to do your homework and educate yourself. So, I'd begin doing some research on ostomies, jpouches. Perhaps, schedule a surgery consultation (no obligation question and answer session). Would a second opinion be warranted?

First of all you should know that you are in great hands as university of Chicago really knows what they are doing when in comes to all things ibd.
That being said hearing that you have dysplasia is tough. I would research your options and keep open to surgery.
sorry that you are going thru this

Actually I am afraid to offer any advice since possible cancer is way above my pay grade. Try a forum search for “ItsAlwaysSomething dysplasia”. She has numerous posts about her dysplasia diagnosis, and she at least recommends a 2nd opinion. Very similar to ipoop's advice that “if the dysplasia isn't bad it can be monitored on a more frequent basis to see if it worsens.”

ItsAlwaysSomething said...
In your position I would definitely want a second opinion regarding the pathologist's finding and your doc's recommendation.

When dysplasia was found during a colonoscopy 3 years ago, my doc STRONGLY recommended a colectomy. I did a lot of research and instead opted for frequent surveillance. Several colonoscopies later there has been no other dysplasia found.

I have to deal with a polyp removal which is very minor by comparison.
Because colon removal is such an irreversible step, IMO second or more opinions are necessary.