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At what point should one consider surgery?

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Ulcerative Colitis
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Posted 6/25/2013 6:19 PM (GMT 0)
Thanks, Somedude -- as I said, that has really helped me just be with my UC and not feel like I have to DO something about it. :-)
Posted 6/25/2013 7:28 PM (GMT 0)
OK, I'll play ball with Somedude... I think it's the norm nowadays that for most people "surgery comes to them." That's what happened to me. I tried high doses and combinations of most of the approved drugs (after being a non-responder to high doses of Cimzia and Remicade my GI wouldn't let me try Humira), and found myself sicker than ever, unable to work, really believed I was going to die before the end of the year. When I found out my eyesight was at risk because of side effects of the drugs I was taking, I snapped and scheduled surgery.

That said -- if you look at epidemiological data, it isn't hard to predict who is going to eventually need a colectomy. Recently I read a paper that had a list of criteria and if you fulfilled the criteria, your risk of colectomy within a year was something like 95%. Looking back, I had fulfilled those criteria months before my colectomy. I was only in a truly severe flare for about four months, but during that time I was hospitalized, disabled from work, isolated, and I guess most importantly in agonizing, constant pain. If someone had told me that although there was a chance of getting into remission, 95% of people with symptoms like me had surgery within the next year, I would have just done it then. When I was hospitalized in the middle of that flare I had a consult with a surgeon, and I remember wishing that I would get worse instead of better so I would be forced to have the surgery. My doctors were all telling me to keep fighting and that any day the Remicade would kick in and put me in a complete remission. In reality, based on my signs and symptoms, I had less than a 5% chance of avoiding surgery, and even less of ever getting into remission. But I didn't know.

I think GIs need better education and to inform their patients earlier about risks and odds like this. For some people a 5% chance of avoiding surgery is enough to go on. It wouldn't have been enough for me. This is the kind of information that needs to be out there so people can make informed decisions. Not only can you avoid pain and mental anguish, but you can choose to have surgery when your body is healthier rather than wait for an emergency situation that's more likely to have severe complications.

Anyway, my rant is over...
Posted 6/25/2013 7:50 PM (GMT 0)
That's the thing with this disease that's so frustrating. I think it does take a toll on you the longer you have it, especially if your symptoms are severe. I think I managed okay for many years but between the bad flare I had 2 years ago and this recent one landing me in the hospital, it's made me more accepting of surgery. I was at a point where I was in enough pain and so frustrated with not getting better awhile in my hospital room, that I just wanted my colon out. Now I'm a week and a half out from the hospital and doing a good deal better and slowly reintroducing foods. The pain is much better, there is less frequency, and my symptoms are slowly getting better.

Of course it's probably the 60 mg prednisone and the 100 via IV in the hospital that helped a bit. Or the first remicade infusion since I stopped back in January. I expect the next one may make me even better, even if I did come off of remicade before. Maybe it won't do much. Either way, the funny thing is how it's easy to live in the moment feeling better and put the surgery to the back of my mind.

But I haven't really. I still have my consults and still want to do it. I figure even if remicade works, what happens when it stops? Humira? Then what? I just get frustrated with the on/off symptoms that come and the unpredictability of how foods treat me.

I think if anything the hospital visit reaffirmed that okay - if I am going for surgery, I want to do this when I'm at my healthiest. Not when I'm at my worst. Maybe I'm s bit naive with the surgery, but seeing YouTube videos, reading posts, and looking at stastistics, it just seems like a better overall quality of life and that the adjustments aren't that bad once you're fully healed.

I do feel kind of guilty. I don't have pancolitis. I don't have constant flaring or am keeled over in pain all the time. Even my bms per day when I'm at my best, are pretty low. It's just those moments when things aren't "Pretty good" that take a toll on me. The loss of work, the nausea, the frequency and urgency then.

I am really amazed at the strength people have that are able to cope with more severe symptoms for longer durations/the majority of the time. My friend had the first step of her surgeries, but she was so bad and had pancolitis and couldn't even get to the mail box. It makes me realize how much more severe some people are with what they deal with.

Post Edited (tiesto81) : 6/25/2013 1:54:56 PM (GMT-6)

Posted 6/25/2013 9:04 PM (GMT 0)
Just so you know.....I never had pain with my UC. I did not have pancolitis; I had a small, about the size of a quarter, ulcer in my rectum that would not go in remission. I did not have nausea. I rarely missed work. But I did have a low quality of life. I could not plan travel and I rarely made social engagements due to frequency. Everyone has their limit; once I reached mine (hated missing out on life), I opted for surgery.

Sue
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