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At what point did you decide to have surgery?

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Ulcerative Colitis
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Posted 11/23/2018 12:45 PM (GMT -5)
I knew surgery was needed. Strange that most people don't want to hear about U.C and pooping/blood etc which i understand.Even my own wife[soon to be ex wife] cringed when i was in a flare.People have no clue what we go thru on a daily basis.Not to be rude but i don't really worry about what people think regarding surgery.As long as i knew it was time then it was time.good luck
Posted 11/23/2018 9:14 PM (GMT -5)
I remember telling on friend that I was considering surgery and she said “Will you have to have a bag? That would be the worst!” I quickly corrected her, “No crapping your pants with bloody diarrhea at work because you couldn’t get to the toilet in time is the worst”. I’m not sure if it offended people when I talked so frankly about my illness, but I got so sick of people thinking all I had was an “icky tummy” that I just started laying it all out there. I wasn’t looking for sympathy, but I think awareness is key. It’s important that friends and family know what this disease really is.
Posted 11/23/2018 9:48 PM (GMT -5)
Run I agree. People hear what they want to hear. As we talk about poop,bloody poop etc etc etc our best friends cringe. I never ever stopped to think about what someone thought about me,surgery and a bag. I'm very happy I had my surgery. Made some great connections here this year. Great site for some tough as nails people with a nasty disease
Posted 11/27/2018 3:17 PM (GMT 0)
I have a credo: I do not listen to advices from people who have no idea what is going on. Generally people are ready to provide an advice without thinking. People relay on their intuition if they do not have much information. I consider advice only from competent people. When I had bowel cancer my own mom advised me to avoid surgery. I am happy I have not listened to her.
Posted 11/27/2018 2:53 PM (GMT -5)
I met with my GI yesterday. We decided on trying one more month of Xeljanz (12 weeks total), then having a scope to check things out. If there's no improvement, it's off to the surgeon I go. He doesn't think that it will kick in since I've failed so many meds before and haven't had any improvement in these 8 weeks, but he said surgeries could be scheduled quickly, so I'm mostly using this month to get things in order with work and preparing my mother mentally. On the plus side, my doctor said I was the most educated patient he's had regarding j-pouches, so thank guys!

Oligodar, my mom is the same with doctors and surgery. She herself has a few medical issues that she just stopped meds for randomly last year. She now complains about how bad she feels but refuses to believe it's the lack of meds. I'm glad you got the help you needed!
Posted 11/27/2018 3:13 PM (GMT -5)
Sounds like a good plan. Any good colorectal surgeons within your area, just in case that becomes necessary? May not hurt to schedule a consultation, a no-obligation question and answer session with a surgeon. Just to make sure you're at peace with the process, possible complications, recovery period length, and anything else that's on your mind.
Posted 11/27/2018 3:29 PM (GMT -5)
Luckily, I live close to NYC, so I have a lot of great options. My current GI is affiliated with Mt. Sinai, which is part of why I switched to him. They seem to have a really great IBD surgical program (and take my insurance!). My doctor recommended Dr. Alexander Greenstein who has a lot of experience and really great reviews. I figure he would be a good place to start with a consult.
Posted 11/27/2018 7:25 PM (GMT -5)
Partly check out New York Presbyterian/Cornell on East Side.Keith or KS1905 had his surgery there so i checked it out this time last year.I had all 3 surgeries this year,everything went great.I had checked out surgeon at North Shore on Long Island who was competent but the fact that NYP has its own colorectal wing sealed the deal for me.Every RN,Aide knows what we are going thru and was a big help.My gastro recommended Adrian Greenstein and son 2 years ago.[Adrian must be the Dad and has died since] at Mt Sinai.I would think Alexander could be his son????I liked Dr Shukla at consultation that i didn't have to go any further.Hope for best for you
Posted 11/28/2018 4:06 PM (GMT -5)
Just a little financial tip. Don't schedule your surgery until the next year. With all the follow ups and all the surgeries you'll hit your deductible and out of pocket max quickly. If you wait till January you'll only pay that once, not twice.
Posted 11/28/2018 4:58 PM (GMT -5)
Bull i had all 3 surgeries this year bc of a $4,000 deductible.Luckily i held on til January of this year for surgery 1
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