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Colectomy regrets ?

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Ulcerative Colitis
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Posted 12/22/2016 12:14 PM (GMT -7)
Hi ! I haven't posted in a while. I was on Humera and caught cliff immediatly so I took a break from Humera 6 months ago. I had been doing fine but some mild symptoms came back. I went to the doctor and since I was not compliant (given having an illness is new to me and I would never risk being noncompliant again) his rec is to redo a scope next week at which point we will decide if we should bother trying a biological again or just go straight to colectomy. It might actually make sense to do colectomy. But I have a busy job and 3 very young kids one of which is a baby so would also be very disruptive. Has anyone ever regretted having a colectomy ? What are the regrets?
Posted 12/22/2016 12:15 PM (GMT -7)
How bad are your symptoms right now: number of bms a day, any urgency, blood or mucus? Are you currently taking any uc medications at all?
Posted 12/22/2016 2:28 PM (GMT -7)
I had j pouch surgery 6 yrs ago. Not a single regret. Tough procedure to go through but for me it was all worth it. Depending on your situation you should have a choice of either a permanent ostomy or a j pouch.

PS - my kids were little at the time of my surgery. It was a pain but I made it through with the help of family and friends. IF you need the surgery, don't let that be the reason not to do it.
Posted 12/22/2016 10:06 PM (GMT -7)
I have a permanent ostomy and no regrets. But I was to the point of not being able to work, vacation, or socialize very often. So a colectomy gave me my life back.

It is a personal decision and I think depends a lot on your quality of life. Is it keeping you from doing things with your kids and family? Or are you still doing things you love?

A woman in my ostomy group had 3 young children at the time of her surgery but it gave her time back with her kids. She was able to take them to the zoo and the park which UC was keeping her from. I would weigh if the short term strain on your family would be worth more quality with them later.
Posted 12/23/2016 2:47 AM (GMT -7)
I don't have bad symptoms , occasional cramping and only one to two somewhat loose stools in the morning. But I didn't have bad symptoms last time I got scoped in may and there was extensive advanced pancolitis. This time though there is no blood. I would be willing to try biologics again before surgery but they said if my disease is extensive I should just get my colon taken out. I think their main concern is colorectal cancer risk.
Posted 12/23/2016 4:02 AM (GMT -7)
I wouldn't believe those symptoms warrant surgery, I'd see what the scope results are and restart your medications. You were diagnosed in 2015, so your colorectal cancer odds aren't elevated at this point. At least 10 years before crc odds increase, it's the longer you have uc, the greater the crc risks and therefore we're more regularly you're scoped as a precaution.
Posted 12/23/2016 6:22 AM (GMT -7)
Good gosh, you'll be going more often than that with a j-pouch.

I'm all for surgery when you have reached the end of the line with medical treatment and the symptoms are so debilitating they seriously interfere with your life. But these people sound like cowboys. Like iPoop said, the increased risk for CRC doesn't even start until 10 years after having UC. And that only applies if you've had inflammation for all that time.

You have amazingly mild symptoms really. I'm not saying that to make you feel bad, but to make you realise that you have the luxury of time and can afford to try different biologics, or - if this is your sort of thing - diets and supplements. You may well need or want surgery one day, but that's another issue. Do you want surgery right now? If not, tell your GI to bugger off :/
Posted 12/23/2016 8:34 AM (GMT -7)
GMSAF, I thin we have a similar situation. I too was diagnosed in 2015 with mild-mod pancolitis. Never had any visible blood, but loose, watery stools, predominantly in the morning, 1-3 times. I've been on Lialda ever since and clinically I responded pretty well but the colon doesn't look any different. I've moved a couple times, so haven't been able to go on a biologic yet, but hopefully in 2017 (soon, I hope).

I was shocked to read your docs are wanting to remove your colon when your symptoms are what they are. Seems really drastic. I'm glad to see folks are agreeing with this sentiment.

There seem to be a lot of biologics available right now. I think I'd try each and every one before I even considered surgery.

Best of luck to you,
sonvolt
Posted 12/23/2016 8:41 AM (GMT -7)
Sixteen years ago I had surgery for UC; no regrets.

Sue
Posted 12/23/2016 8:58 AM (GMT -7)
I bet the doctor is just trying to scare you straight due to your noncompliance. Your symptoms don't warrant surgery as there's still lots of treatments for you to try.
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