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Ulcerative Colitis for 15 years

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Ulcerative Colitis
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Posted 10/5/2019 1:23 PM (GMT -7)
Hi all,

I've been a long time reader of this forum. I was diagnosed with pancolitis in 2004 when I was only 13. Asacol put me into a wonderful remission until I was about 20. Since then I've had an inflamed rectum on and off with a cecal/ascneding colon patch. I usually do not have many life altering symptoms. I have formed stools about once a day although there is often mucus, blood and some cramping. In this way I've always seen myself as lucky.

My question today has to do with cancer. I know I am at a substantially increased risk of cancer since I was young and diagnosed with pancolitis. Has anyone here had several decades of ulcerative colitis without any dysplasia/cancer? I feel doomed by the articles I read.

I get scoped every 2 years and will likely go every year soon. My gastro doesn't see many UC patients, and I can tell gets very concerned by my inflammation, age and length of disease. I had a colonoscopy yesterday and she thought she saw a suspicious area in the ascending colon which she biopsied (along with random biopsies). I'll know the results in about a week. She made it seem like surgery is definitely in my future. sad

Thank you for reading. My anxiety is a bit out of hand right now since my doctor hinted at cancer/colostomy.
Posted 10/5/2019 1:40 PM (GMT -7)
If you still have active inflammation, why aren't you on stronger medications? Has your doctor suggested biologics?
Posted 10/5/2019 1:43 PM (GMT -7)
Usually the increase in mesalamine will put me into remission. I was in remission last year. The symptoms I have aren’t very severe. I also don’t have the best insurance.
Posted 10/5/2019 1:48 PM (GMT -7)
Need for stronger meds isn't based on symptoms - it's based on inflammation found on scopes. What were the results of this colonoscopy?

What's more, the long term risk of a UC patient possibly developing colorectal cancer *may* be tied to lingering inflammation. So if there is still inflammation found, wiping it out with stronger meds might reduce risks of developing cancer in the future.
Posted 10/5/2019 2:56 PM (GMT -7)
I can appreciate that and I’m sure my doctor will be adjusting medications soon. Thank your beave for your replies.

I was curious to find anyone on this site that has had ulcerative colitis for 20, 30, 40 even 50 years. Is it unheard of for UC patients to keep their colons 50+ years after diagnosis or does Dysplasia/cancer catch up with most. I’ve read articles that give me a 40% chance of getting cancer after 30 years (given youth and pancolitis). If my chances are so grave, I’m just thinking I’ll end up without a colon at some point.
Posted 10/5/2019 3:25 PM (GMT -7)
I have had UC for about 18 years.
First precancerous polyp was found about 13 years into UC. Since then I do annual colonoscopy, they found precancerous polyps in each one of them!
Annual Colonoscopy is the best thing you can do right now.
Posted 10/5/2019 3:27 PM (GMT -7)
Yes, people have had UC for 30, 40, 50 years without developing colorectal cancer and without needing a colectomy.

If I remember right, the lifetime odds of a person with UC needing to have their colon removed are somewhere around 25-30%. That probably includes people with severe disease AND people who develop cancer.

So 70-75% of people with UC are never needing to have their colons removed.

Are you sure the article said a 40% chance of developing cancer and not a 40% *increased* chance of developing cancer compared to a person who doesn't have UC?
Posted 10/5/2019 5:33 PM (GMT -7)
Just wanted to add that most people who have their colon removed don't have a colostomy.
Posted 10/5/2019 5:42 PM (GMT -7)
Thank you everyone! I really love the support this forum gives. No one quite knows what you’re going through except those going through it.

@beave - The article I read with the 40% chance was only one article. It was specifically regarding those diagnosed younger than 15 and who had pancolitis at diagnosis.

@The_Swan - That gives me hope. Although, it seems like my doctor would be recommend removing the colon at any sign of Dysplasia, even low grade because of the chances. I’ve had many GIs, and would definitely get second opinions if she recommends this.

@Uniform Charlie - I am so thankful they have the J-pouch option. I know it wouldn’t be the end of the world, but really like having a colon too. Lol.
Posted 10/5/2019 5:45 PM (GMT -7)
Can you share a link to the article you read? I'd like to see it.
Posted 10/5/2019 5:58 PM (GMT -7)
https://www.ncbi.nlm.nih.gov/pubmed/2215606

It's from 1990... so it probably doesn't take into account all of the better medications we have today.
Posted 10/5/2019 6:27 PM (GMT -7)
Thanks for sharing. You were right about it saying 40%. But you're also right that newer medications may reduce that risk.

Another thing that may reduce risk compared to this: This data was accumulated on people before colonoscopies were routinely done. Screening colonoscopies have led to doctors finding pre-cancerous lesions and/or polyps and removing them before they become cancerous.

What's more, their numbers are the highest I've seen. You seem to have found the study with *the* worst outlook/data there is! smile It's from a single population cohort (a single group of people) in a single country.

f you look at other, similar studies done more recently, the numbers are lower, even for highest risk patients (like those diagnosed young with pancolitis).

There are dozens of studies looking at rates of colorectal cancer for people with UC, and the results are all over the place in terms of just high much the rates are increased compared to the 'normal' population.

Look at some newer data and you'll see that none of it shows rates as high as the study you linked to.
Posted 10/5/2019 6:40 PM (GMT -7)
I've had UC about 17 years now, diagnosed age 40-something.
This article includes that "40% risk of cancer after 35 years with UC" statistic your doctor spoke about but there are more recent studies cited that don't agree with that number. And an important thing is that cancer does not equal death or colon removal.

Inflammation control (as another poster said) is very important to reduce cancer risk.
Perhaps you could print this 2008 abstract and give it to your GI so that the two of you could discuss it as it relates to you in particular.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2725331/
Posted 10/5/2019 7:58 PM (GMT -7)
I’ve only had UC for two years and have probably not read as much as you have. There is a high risk that I could develop colon cancer because it is common in my family. I am not concerned though, because I have regular colonoscopies and I am under the impression that it could take as long as ten years for a polyp to develop into cancer and that any polyp found in a colonoscopy will be removed. My father had colon cancer twenty years ago and has been cancer free since. Last year he had polyps near his stomach that could not be removed without surgery. He had a choice to wait years for it to be removed but he chose to have the surgery because he is 87 years old and healthy enough to have surgery at this time. He’s fine again! I feel like if I have a colonoscopy every three years or so any potential cancer will be caught.
Posted 10/5/2019 8:36 PM (GMT -7)
I was diagnosed in my teens and it’s been like 20 years almost. As long as you do frequent colonoscopies your covered. Try not to stress over that or possibly needing any surgery. Most people don’t. Meds keep getting better and plenty of options for you to try just in case you get a bad flare one day.
Posted 10/5/2019 9:13 PM (GMT -7)
The chance of developing cancer is not that much higher in the UC population. 40% higher chance sounds like a lot but if the number is like 1.4 higher chance in 10,000 people then yes that's 40% but 40% of a small number.

You have a higher chance of dying from a colonoscopy than getting colorectal cancer due to UC, just to put it in perspective. Your chances are much higher if colorectal cancer runs in your family, in which case you should be getting increased screening anyway.

They often use cancer stats to justify why colectomy is such a good idea, and I always found this approach really slimy. We'd also have less risk of cancer if they did their jobs and found a cure, rather than shelling out billions in research to develop the same kinds of ineffective meds over and over again.
Posted 10/5/2019 11:30 PM (GMT -7)

MarkWithIBD said...
...
You have a higher chance of dying from a colonoscopy than getting colorectal cancer due to UC, just to put it in perspective. Your chances are much higher if colorectal cancer runs in your family, in which case you should be getting increased screening anyway. ...

Wait, what?
Posted 10/6/2019 5:06 AM (GMT -7)
I was diagnosed in either late 1996 or early 1997, was put on Remicade and did great for over 20 years. Then, antibodies to Remicade, tried Humira..failed, now on Entyvio but was diagnosed with C-diff Friday. So far...no colon cancer. Don't ignore the inflammation!!!!
Posted 10/6/2019 7:45 AM (GMT -7)
great un !


and quit reading dooming articles ;-)


TT
Posted 10/6/2019 10:07 AM (GMT -7)
Cancer is subjective, so no stats will predict that for you.

With colon cancer of a parent...I suggest every 2 years at least with c-scopes, and a reminder to the GI about your dad at every scope.

q
Posted 10/6/2019 2:15 PM (GMT -7)
Thank you everyone for your comments. Very helpful!
Posted 10/6/2019 2:19 PM (GMT -7)
I wouldn't assume it's cancer, or that cancer is in your future, but I would be prepared for whatever happens. Surgery is awful and the last thing anyone wants, but my life has does a 180-degree turn since surgery. I am so much more capable of everything, and so much more up for anything since surgery. I was not living with UC. I am not saying to give up of course, but I would move to yearly scopes and fight, if it does come to surgery, try to go into it with an open mind. It's not what we want, but it isn't necessarily the end of the world.

Good luck. I hope the results are good!
Posted 10/6/2019 4:37 PM (GMT -7)
All I know is the percentage of people with UC that actually get cancer is really low. I don't know why they scare us to death constantly telling us we are higher risk. But good to stay informed and on top of it. ;o)
Posted 10/7/2019 5:14 AM (GMT -7)
I just went to my GI last week and was also told that since it's been 15 years since my diagnosis he's increasing the frequency of my colonoscopies. Hello fellow 2004 diagnosee!

My mother has had UC for 40+ years and still has her colon and hasn't had cancer.
Posted 10/7/2019 8:43 AM (GMT -7)
I was diagnosed with UC in 1973....do the math.

I was in remission from 1997 to 2018, when radiation therapy for prostate cancer fired up both radiation enteritis and UC. It's finally cooling down, now.

My grandfather died from colon cancer. Just stay vigilant, and get scoped every two years. Of course obsessing about cancer may fuel it....so please don't.
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