Been told I have Dysplasia

Hello to you all
first time posting ...its long but i feel as though i should add everything

Im a 44yr old guy whos had ulcerative colitis since 2000 and in that 18 yrs ive kinda kept it under control I have been in remissions about 4 times in that time
2001-2004, 2005-2007 2008-2012, 20013-2016

ive kept the UC under control with prednisolone enema and tablets and Mesalamine Enema and tablets
In general its never stopped me from continuing a normal life holidays a or working, as i can hold well in emergencies and most of my movements are in the mornings.
Ive had many colonoscopy and most have been good, somtimes the odd inflammation and polyps but the tests have been good.

Ive been in a Flare since Nov 2016 and im still in a flare now, was given salofalk liquid enema and Mesalamine they kept it under control.

In Sept 2017 i moved from London UK to Burton so didnt really get a chance to see a doctor till April 2018, but again the UC never really effected my life.

So i thought id see a GP here in Burton who then sent me to see a specialist at Hospital who said that because your in a new district we will have to perform a colonscopy which i said fine. about 2 weeks before the sigmoidoscopy i got a copy of the letter which he had sent to my previous specialist in London stating the he recommends having surgrey, i was kinda puzzled and why as its not really bothered me, and i was hoping i would start something new like azathioprine.
So i had my colonscopy and the results showed 'cobblestone muscosa, deep ulceration and fissures, stenosis of the anal inflammation of rectum and up to 17cm then we have muscosa.
kind of shocked as i didnt feel that bad, did have some bowel movements and maybe a bit of blood but it never crippled me i anyway.

so i went in last week for my biopsy report and they found Dysplasia and if i dont have surgrey i COULD get cancer in 5-10 years, i said NO has i dont feel any different, and they wont give me any prednisolone or start azathioprine as it might cause the Dysplasia to become can cancerous. They are going to discuss at a meeting and its will be up to 3 weeks before they let me know.

Im stuck for worlds, I dont want surgey as i feel good, theres no cancer in my family, currently im on 3.2g of Mesalamine tablets.
The young Dr also said that he wont prescribe prednisolone or start me on azathioprine as that too can cause the Dysplasia to become cancerous

Anyone been in this situation or has, or can offer some information as i dont want to go down the surgrey route :-(

jon

Hi...welcome to the forum.

You are an example of someone with moderate to severe visual symptoms and little to no physical symptoms.

I would get all copies of your past scopes and biopsies reports.
Find out exactly what kind of dysplasia precancer cells.
What grade of dysplasia?
Where exactly was the dysplasia found?

Personally....would ask the three questions because what kind and where is important. I couldn't be worried 24/7.....the inevitable will happen eventually. I'd rather deal with surgery earlier than later. Bowel cancer is a beast and typically nonsymptomatic until it's established.

q

I totally understand not wanting to do anything, but in reality, if you do end up with cancer in a few years, you will end up in the same place, facing surgery. If you wait, you could be facing chemo or radiation in addition to surgery, or even risking involvement of other organs, and potentially death or long-term chronic metastatic cancer that would be incurable.

It's easy for me to say I'd have surgery, because I did, and probably for a much lesser reason, though my quality of life was significantly impacted, I didn't have cancer forming or anything immediately dangerous to my long-term health...

What options did they offer? Monitoring?

I think you should get the reports like quincy said.
Get a second, and possibly even a third opinion.

If the the pathology says it's high grade, I personally would consider surgery sooner than later. We have a member here, songlady, she was monitoring for a single serated polyp, which is less risky than what you're likely dealing with, she opted to wait and see, and the cancer moved quickly. She ended up needing colon surgery and chemo because the cancer was more aggressive than they ever would have imagined. She was fortunate to be able to get a jpouch in 2-steps, but she did have to wait longer between steps because of the chemo.

I am not trying to scare you, when it's UC symptoms without dysplasia, i am usually quick to say "wait and see" or "try all the meds before considering surgery", but this is not the case for you unfortunately. I wish it was.

A year ago, I was diagnosed with UC. They did a CT scan as part of a follow up appointment to better see what condition my guts were in. They found a tumor the size of a grape on my left kidney. So, within the space of a month or so, I went from being a healthy competitive runner to having IBD and kidney cancer. It was a lot of rough news in a short amount of time. The more I read about cancer, the more I realized it has everything to do with how soon they treat it. UC was a blessing for me in that if, I didn’t get that CT scan, I wouldn’t have known it was there until I showed other symptoms, and by then, it would have been much harder to treat. Because they found it early, they only had to remove a portion of one of my kidneys and it hadn’t spread anywhere, so I didn’t need chemo or radiation. I was blessed.

To me, getting the news that you have dysplasia is rough, but if you can avoid ever getting news that you HAVE cancer, you should. You have been given the gift, of early detection. I personally, wouldn’t mess around with it. Get some second opinions and put together a plan. Surgery ain’t fun, but considering the alternative, it ain’t that bad.

I had a similar diagnosis a year ago. My Gi recommended I see an ibd specialist at the Orlando Hospital in Florida where I live. Had different type of colonoscopy ( blue dye contrast). There was talk of removal of my colon if there was more findings. Decided to go on Entyvio. Been on it about a year. Last colonoscopy and Prometheus test showed remission. I would try something like that before removing my colon.
My Grandfather died from colon cancer. So I guess it’s in the family. I feel very confident about my medical care since seeing a specialist. Great doctor and great hospital. I only use regular GI in case I need rectal cream or such. The specialist only deals with cases like you are describing.

Hello

Thank you to you all for responding.

I talked to another Dr at the hospital today and he said I have low grade Dysplasia and it's the the last 20cm of my bowel from the rectum up that's inflammation in.

I asked if I could go on a yearly monitoring if I go onto Entyvio or azathioprine, I've to see the gastroenterologist in about a week as Mesalamine doesn't work for me anymore.

The Dr was happy that am going down the monitoring route as if I take surgery now there would have always been the doubt 'what if"

The only thing that worried me was when I asked about the J pouch he said that would be unlikely as you have anal stenosis and my muscle are weak and you will get a sudden urge for the pouch to empty very quickly.

Kinda gutted at that as I was depending on the j pouch as a last resort if the new meds didn't work .

Anyone with anal stenosis got a j pouch, as I don't want a stoma bag forever

jon

Post Edited (jon81) : 10/3/2018 11:28:37 AM (GMT-6)

get another opinion and find out how often surgeon does surgery?

I second, get another opinion. You should be aware that the risk of getting cancer will grow nearly exponentially in future. You might not catch it early. I really do not want to scare you. Get more information before final decision.