Need help with decision. I am worried!!!!

I am a 35 y/o male diagnosed with Ulcerative Colitis when I was 20 y/o. The first few years it was "hell" but for about the past 5 years I have not had one single flare up. In the past I used to take meds, but over the past four years or so...I take no medication.

In 2008, I had a colonoscopy that showed that my right side colon being "carpeted with psuedopolyps" and active colitis. Biopsies came back all NEGATIVE. No dysplasia. The GI said we need to monitor it regularly and we should think about removing the colon at some point down the road.

In 2010, I had another colonoscopy. Left colon was fine, transverse show mild disease, and right side showed moderate disease. In the right side, along with many psuedopolyps the doctor found an abnormal polypoid mass. All biopsies came back NEGATIVE and the lab findings of the polypoid mass were consistent with that of an inflammatory psuedopolyp. Again, no signs of dysplasia.

I will have another colonoscopy later this year.

My question:

Has anyone else have a similiar situation with their UC?

Should I get my colon removed? I met with two surgeons... the young surgeon said lets do it within the year and the older said we dont have to do it now. My new GI said we can wait. I'm confused.

FYI (important detail) - I have three small kids and also a wife in the late stages of ALS right now. Having elective surgery just isn't practical for me - unless it's an emergency.

Any help or advice would be sincerely appreciated.

First, I'm verry sorry to hear about your wife.

Second, are you on meds? If you aren't, I would get back on them ASAP, especially something mesalamine-based, as they are protective against colon cancer.

get a good GI doc, get on meds, think of surgery as a last resort to save your life.
UC is generally manageable with meds.
Sorry about your wife, best of luck to you.

I encourage you to post this question at www.j-pouch.org. Lots of people there that experienced this and can give you their advice. You might also PM Jan Dollar on that site. She's a nurse and her input would be invaluable.

My condolences to your wife. I lost a good friend to ALS and have another one in the mid stages of it. Best of luck to you on your decision on surgery.

Sue

I agree that surgery does not sound like the most attractive option given your circumstancs.  I am very sorry about your wife. 

I am surprised that you have signs of inflammation from your scopes but no symptoms of the disease.  If you are not having flares and having no problems I don't know why a doctor is suggesting surgery.  Seems extreme unless there is something else going on.  If I were you I would ask what the expected benefit is for surgery and the possilbe consequences of not having surgery. 

Even though you are not having symptoms it does seem that your scopes show active disease so I agree with the others about getting on medication to get that under control.  Long term inflammation can have serious effects and can increase your odds of developing colon cancer.

Best of luck to you!

The colon cancer issue is so overblown by post surgery folks it's ridiculous.
There is a less than 2% chance of someone with UC developing colon cancer, thats a fact.
If you want to "sell" surgery to UCers, enough with the colon cancer scare tactics already!

Lets respect each other opinions please. But lets do it with tact okay?

Red-34, I am trying to be tactful and I hope I am succeeding.
I think there is a lot of misinformation being passed around as fact. I also think scare tactics are used by some to justify their choices and sway others about their own decisions.
Below is part of a recent article from the NY Times that discusses risks associated with UC:
(I stand corrected -I said 2% risk of colon cancer, it's actually 4 %)



Q: What do you tell a patient who is afraid of the possible side effects associated with the more powerful drugs used to treat ulcerative colitis?

A: There are two different ways of looking at risk. One is the relative risk, which compares your risk with somebody else’s, and the second is absolute risk. If I say that the risk of a 20-year-old with ulcerative colitis getting colon cancer is 4 percent, that is 10 or 20 times the risk of another 20-year-old who does not have ulcerative colitis, because 20-year-olds don’t get colon cancer. So that’s the relative risk. But the absolute risk of all ulcerative colitis patients getting cancer is only 4 percent.

If the patient is feeling well, is doing well, then the risks for someone on any maintenance therapy are very, very small. What is the risk of lymphoma for a patient on azathioprine? It is maybe one in a 100. So, you have a 1 percent risk of getting it and a 99 percent risk of not getting it.

Ultimately, the best way to manage the risk is to get the disease under control and keep it under control. This is why I tell all my patients to stay on their medicine. And to talk to me first if they want to get off it.

I believe "absolute risk" means that with all things averaged out it's 4%, that includes people with more severe disease. The 20 year old age was just used as an example and obviously, as your age increases, your risk for colon cancer increases as well, people with UC or not.
Also, if your UC is 'well controlled" your colon cancer risk goes way down, and if the inflammation continues unabated, your risk goes up.
But for people to be having their colons removed out of fear of colon cancer, based on the data, thats seems insane to me.
Here's a link to the entire article, its also talks about the myth of stress/UC. I found it very interesting:
http://www.nytimes.com/ref/health/healthguide/esn-ulcerativecolitis-expert.html

The way my doctor explained it to me is the longer you have UC the higher the risk factor becomes of developing colon cancer. I have had UC for just under 20 years now. He states that my risk of cancer has tripled due to the length of having UC. I have colonoscopies every year but as he puts it, there's a chance that they won't catch signs of cancer when taking biopsies, that in itself is a scary thought. Other factors in my case are I'm a smoker. I can't quit without going into full blown colitis. I've tried 5 times now and the nicotine keeps my disease under bay. I have flare-ups once or twice a year, which I'm in as I write this. Medicine therapy doesn't give me relief. Due to the higher colon cancer risk and the fact that I smoke I feel I'm a walking cancer time bomb and for this reason I've decided to have the JPouch surgery. I've tried the nicotine patch, etc and nothing works. I also got the UC back in 1993 two months after I quit smoking!! In order for me to quit I have to have the surgery or live with full blown colitis which I'm not willing to do as we all know what that's like. My doctor says it's time.

I'm scared of the surgery but at the same time I feel it's the right thing to do at this point in my life.

     First of all, I want to offer my condolences to your wife.  ALS is a terrible disease.  One of my hospital roommates was in her last stages of the illness and my heart just ached for her.  I will keep your wife in my prayers along with you. 

     I haven't read all the responces, but I would put off surgery for the time being.  Your condition does not sound life threatening and you don't have dysplasia. 

     During the twelve years I suffered with UP (proctitis), I found that GI doctors will keep medicating and colorectal surgeons want to cut it out..lol.  This is entirely the patient's decision and you have to weigh the pros and cons of surgery.  From your post, it does not sound like you are suffering with active disease.  That, in itself, would turn me against surgery.

     I agree with the post that you should be on some kind of maintenance medication and I am surprised your GI doctor did not prescribe one.  It may help heal your colon.

     I chose surgery because all the meds failed me, I was prednisone dependent for two years prior and my over-all health was failing rapidly, plus the fact I was 63 yrs old and certainly NOT getting any younger.

     In a nutshell, if I were you, I would question my GI about a maintenance drug (maybe they don't feel it would help?). I would NOT schedule a surgery.  Keep on top of your condition, as it seems you are doing, by getting regular colonoscopies.

     Best of luck to you and your family.  God bless.

    

BeatUC and ByeByeUC, you both have very valid points and this is the point where you guys are going to have to agree to disagree. Both of your opinions are important but lets remember to respect each others point of views. Everyone has ideas, personalities, opinions and thoughts that not everyone is going to agree with; that's part of being a participant of a very active forum.

I would love to agree to disagree and have suggested that several times. Let's see if that holds now going forward.