I had an annual colonoscopy back in early April, and I finally got the results back last week. I have low-grade dysplasia in one biopsy of my transverse colon. The gastroenterologist did a very small number of biopsies, so I’m a little surprised they happened to find an area with dysplasia.
I have a video visit with him on Tuesday. I suspect here’s going to recommend a repeat colonoscopy on a few months to verify. If they find dysplasia, I think they’ll want to take my colon out.
I’m still figuring out how I feel about it. I’ve known since I was diagnosed with ulcerative colitis 32 years ago that I might need a proctocolectomy, but now that it might be a real thing it seems different.
I’ve done a lot of reading. I’m likely to be a poor candidate for a J pouch, so I’m guessing they do an end ileostomy where I have to wear a bag.
I keep telling myself not to stress to much before anything is confirmed, but it’s easier said than done.
On top of that, my last PSA blood test was high. I’ll get that test repeated this coming week. If it’s still high, they’ll do a biopsy, and possibly a prostatectomy.
Who knows - maybe they can just open me up once and take out all the unnecessary and failing parts at once. I’ll still need a liver transplant at some point, but maybe I can hold off on that for a few more years.
Ugh. I’m sorry to hear you are dealing with all of this. Is it cancerous? I’ll probably be down this path in 10 or 15 years do to a lifetime of IBS and familial colon cancer.
Dysplasia is precancerous changes. Mine is low grade at the moment, but with my medical history (32 years of ulcerative colitis, 18 years of primary sclerosing cholangitis) my colon cancer risk is very high - this far into these diseases, around 35% of patients have already had colon cancer. There is not much agreement on whether to remove the colon in cases of flat dysplasia (mine was in a normal-looking part of the bowel, not a raised area or polyp) but many studies some in the past few years suggest it.
IBD was a huge life change for me. I was diagnosed my first year of college, and it really threw my college career off track. I fought with it for many years, but it’s actually been pretty quiet for almost fifteen years now. That’s not uncommon when PSC crops up, but despite the lack of inflammation and bleeding, my colon cancer risk remains very high.
The good news in the test results was that the cells they collected from my bile duct were normal. So I don’t have bile duct cancer, which would mean either an immediate transplant or a painful death.
I’m not as wrapped up in my body image as I was in my tend and 20s when my IBD diagnosis came about, but I dread all the inconvenience if I need an ileostomy. I already put up with a lot of inconvenience because of my incontinence, and an ileostomy bag will add to my daily burden of dealing with bathroom issues.
sorry to hear about your health problems. However until you know the severity of the dydplasia it is too early to talk about cancer. I have diverticulitis disease which also produces polyps. mild to moderate dysplasia is normally non-malignant.
Like others have said sending you good vibes. Have to stay positive and only worry about the possibilities when they actually happen. Hopefully all works it self out with no issues.
I’m so sorry this has happened to you. One church where I worked for 20 years, the church secretary had to deal with a bag, so I have a good idea what that entails. She managed but no one wants to deal with it. All I can suggest is that you take all of this one day at a time. I sincerely hope it doesn’t come to all that.
I had the appointment with my gastroenterologist. He wants to repeat the colonoscopy in September and do more biopsies (he did 50 last time, and it may too 100 this time).
I asked him what his philosophy is on removing my colon versus continuing surveillance colonoscopy. He said that it’s largely be up to me whether I want to lose my colon or have colonoscopies every six months until they find high-grade dysplasia, then lose my colon.
Well see what comes out of the next colonoscopy. If they find dysplasia again, I’ll probably it to have them remove my colon. Up have to talk over with the surgeons what to do - I’m likely a poor candidate for a J pouch, but there’s always the option of a K pouch or just having an end ileostomy and wearing a bag.
I got my blood drawn for a repeat PSA test today, too. If that comes back with cancer, I’ll see if they can combine both procedures so I can be in the hospital once instead of twice.
Yes, I’m sorry this is happening to you. It never rains but it pours. My mom used to have a 101 sayings and once I was grown I realized all her sayings were true.