Elective surgery??

Has anyone been told they aren’t “sick enough” to have the j-pouch surgery? How elective is the surgery I guess is my question? I’m 31, 17 years with UC. First 4 years I was horribly sick. In and out of hospital. High doses steroids, blood transfusions. Then for some reason my body adapted I guess? I’m not as sick as I once was but still flare a lot. I have a flare probably every 4-6 months. Take steroids to get it under control. Never been in a substantial remission. Never had one year where I didn’t have issues. Yearly colonoscopy always shows inflammation. Told I have a colon full of pseudopolyps. I’ve tried every drug. Remicaid worked but then had allergic reaction. I’m terrified of getting colon cancer. If I was told I could have the surgery I’d do it but my GI is being difficult and is acting like she won’t refer me to a surgeon. I’d just like to talk to one I guess and see what they say but gosh...

Original Post

Yeah, my GI wasn’t at that point either, so I did my own research, got a consult with a surgeon and brought my last colonoscopy results for him to see.  He took me on as a patient to follow just in case I needed surgery.  Three months later, I had another flare even though I was on Remicade and had surgery about 2 months later.  I would not say it was elective.  My colon was a mess.

 

 

I’ve had UC since 2001. First 5  years were hellish. Remicade gave me 7 years of remission, then 2 years of minor flares until nothing worked anymore—even prednisone which always worked. I ended up in the hospital for 6 weeks and had 5 blood transfusions. Because it was an emergent situation I didn’t have much choice with selecting my surgeon and feel I was lucky to have the surgeon who was available. We’re all ticking time bombs in my opinion and sooner or later anyone with UC can find themselves in an emergent situation that could their make life and their recovery much more difficult. Experienced docs understand this.

Mine was certainly elective. 

Yes I had flares. Remicade along with everything else quit working. I was so exhausted after an eight hour shift I collapsed in the bed after work most nights. 

And being a man prostate cancer was a possibility being that my uc was right at the end of my colon and I had had it so long. Hard to believe my uc affected such a small part and caused so many problems. But it did. 

So in my mind I elected to have the surgery to avoid cancer first and get rid of the uc that was making me so sick. 

In my case it was elective. Although I mentally and physically couldn't go on with it much longer had I not had the surgery. 

R. 

CTB23 posted:

Yeah, my GI wasn’t at that point either, so I did my own research, got a consult with a surgeon and brought my last colonoscopy results for him to see.  He took me on as a patient to follow just in case I needed surgery.  Three months later, I had another flare even though I was on Remicade and had surgery about 2 months later.  I would not say it was elective.  My colon was a mess.

 

 

Thanks for your reply, I think that’s what I’m going to try to do....get a consult on my own without a referral. 

Jfill21 posted:

I’ve had UC since 2001. First 5  years were hellish. Remicade gave me 7 years of remission, then 2 years of minor flares until nothing worked anymore—even prednisone which always worked. I ended up in the hospital for 6 weeks and had 5 blood transfusions. Because it was an emergent situation I didn’t have much choice with selecting my surgeon and feel I was lucky to have the surgeon who was available. We’re all ticking time bombs in my opinion and sooner or later anyone with UC can find themselves in an emergent situation that could their make life and their recovery much more difficult. Experienced docs understand this.

So sorry, that sounds terrible. I agree with you that we are all ticking time bombs! That’s why I feel like I’d like to have surgery now while it’s not an emergency. I think I’d have a better recovery and better chances the surgery would be successful. 

Mysticobra posted:

Mine was certainly elective. 

Yes I had flares. Remicade along with everything else quit working. I was so exhausted after an eight hour shift I collapsed in the bed after work most nights. 

And being a man prostate cancer was a possibility being that my uc was right at the end of my colon and I had had it so long. Hard to believe my uc affected such a small part and caused so many problems. But it did. 

So in my mind I elected to have the surgery to avoid cancer first and get rid of the uc that was making me so sick. 

In my case it was elective. Although I mentally and physically couldn't go on with it much longer had I not had the surgery. 

R. 

Thanks for your reply, yes the prospect of cancer is so scary which is one of the big reasons why I want surgery. A lot of my UC is at the “end” as well...causes so much problems! I feel like you did, don’t think I can continue on like this. It’s just the same thing over and over again for past 17 years. Im tired of it. I don’t work, but stay home with my 2 young children and I’m just exhausted all the time. 

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