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Posted 11/15/2017 5:28 AM (GMT 0)
My husband David went for a colonoscopy about a month ago. Several biopsies were taken and sent to pathology. When the pathology report came back we met with his doctor to hear the results. Negative, no malignancy indicated from any of the biopsies taken. The Dr. made a point to tell David that his colon and rectum needs to come out and to not wait that cancer could be there just hiding. He ended up referring David to another gastro and sent the pathology report to them. This gastro was going to do another type of colonscopy (sorry I don't recall the name) where his colon could be painted or lit up and she could then remove any/all lesions of the colon and be put on an aggressive biologic to try to get his colitis into remission. David called the gastro he was referred to to make an appointment. They took one look at the report and said he needs to meet with a surgeon that his colon and rectum needs to come out. On monday at 8am we have an appointment with the gastro and at 10 am an appointment with the surgeon. We are considering a third opinion but there seems to be a lot of urgency. It's really hard and he feels like he is being pushed into surgery. Normally he cannot leave the house until 11-12 and tries to watch what he eats. He doesn't feel bad and actually feels ok for the most part. So confused.
Posted 11/15/2017 5:38 AM (GMT 0)
I don't think he should be rushed. Of course, if there is good reason to have the surgery, it can be very liberating (& necessary in the case of cancer), being able to leave the house when you want and not worry about toilets all the time, but if it's not necessary, then why rush? I think I'd get another opinion if you don't trust what you're being told. It sounds like you've already gotten a couple opinions and they have agreed that surgery is the best solution. If you get another opinion that is the same, I would imagine it's necessary and I would work on researching and learning what you can anticipate. Surgery isn't perfect, but it can prevent cancer from spreading, and it can stop UC flare ups. It can put an end to the symptoms. It's not all bad, there is some good. I had surgery and I live my life very fully, much better than I lived with UC.
Posted 11/15/2017 1:28 PM (GMT 0)
Hi notsosicklygirl

Exactly. We should know more in the coming weeks. Will keep you posted. Thank you.
Posted 11/15/2017 7:26 PM (GMT 0)
Surgery is a big step. Some people love their stoma, some people hate it, and then there are all kinds of opinions in between. One thing is for sure though, it is impossible to know how a person will feel until after the surgery (not immediately after, but once everything has settled down emotionally and physically).

I had my surgery about a year and a half ago. I fought it until the end, and tried all of the meds that were available at that time. Remicade, Humira, and finally Entyvio. In a weird way I was kind of at peace with Entyvio not working, because at that point I just wanted to move on with my life and I knew that surgery was the only available option. I had mild dysplasia so it was a no brainer for me in the end.

In your case there doesn't seem to be an immediate cancer risk so I would try all the big guns when it comes to medication that you haven't already. But if all of that fails and your quality of life gets worse, then surgery might not be the end of the world.
Posted 11/16/2017 12:47 PM (GMT 0)
Why are they pushing surgery so hard? I'd be a bit suspicious and would want a more positive reason than "you don't have any signs of cancer yet but we want to remove your colon before you start showing any signs of cancer".
Posted 11/25/2017 2:33 AM (GMT 0)
Hi NiceCupOftea - biopsies revealed low grade dysplasia throughout his colon and rectum and his high risk of colon cancer. Have one more dr. to see on the 29 then he will decide his course of action.

thanks
Posted 11/25/2017 8:16 PM (GMT 0)
Hi f&f -
Your husband's situation sounds very much like mine. In my case, some of the pre-cancerous cells have been the sort that is known to often "hide" or (as best I understand it?) bury into the colon walls and even go through to other organs, so my GI, the group who reviewed my case, and the oncologist are all somewhat nervous.
And all that makes me nervous.
I have been scoped every 6 months for the past 2 years or so, because each time a new kind of dysplasic cell has cropped up. From what I have read, given this, there is something like a 20% chance I would never develop CRC. I could hedge my bets and go with that, maybe get scoped every 3 months now on out....?
But to me, the surgery seems inevitable, so I'd rather do it now and not wait until I am any older.

Like David, my UC is really behaving well these days and I am feeling great, so it seems such an irony...
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