HealingWell
Search Close Search
☰

Do doctors mostly allow patients decide when they have had enough and get surgery?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/20/2010 3:26 AM (GMT 0)
  I am wondering how getting surgery works. I have read several people say they wish they could go back years ago and have the surgery. I am not in a lot of pain but I do go a lot and have a lot of urgency and inflamed feeling down there. I also have problems with nausea and my hair falling out. I want to be able to travel or just be able to make any plans with my family without fear of what my tummy is doing. I will not take the drugs with the scary side effects. If I am going to have those kinds of risks I would rather just have the surgery. I am not ready to have my colon removed right now but I wonder how they come to the decision to do the surgery.
Posted 3/20/2010 3:52 AM (GMT 0)
A lot of people try all the medications first and if they don't work well enough, if at all, they go for the surgery. Some just try a few. Others maybe get it right away? They did propose it to me as an option when I was diagnosed but I was only 15 and I immediately said no.

Also if you're not willing to take meds, try diet and supplements. If those don't work I'd get surgery.

I think it's up to you (it should be) but the doctors will definitely have their say.

Anyways I hope some people who have gotten surgery will reply, I'm sure they will =)
Posted 3/20/2010 4:07 AM (GMT 0)
I'll try all of the meds, but if I'm miserable, I won't give them all that much time to work. And if I'm really miserable, I probably wouldn't even do any drug trials. I don't want to be as sick as I was with my first flare ever again.

Editing to add:  I think a patient should be able to decide when they're ready for surgery.  If I decide I'm ready, and my GI tells me no, I'll schedule a consult with a surgeon anyway. 

Posted 3/20/2010 4:31 AM (GMT 0)
its up to you when you want surgery. If you want surgery you just need to tell your doctor that you want a consultwith a surgeon and you shoudl be able to get one
Posted 3/20/2010 4:57 AM (GMT 0)
   I also wonder if the fact that I had a rupture in 05 where I was told by the surgeon that I would have problems with scar tissue it was just a matter of time and when I had a colonoscopy back then they found a colon polup. With all of that I go back and forth but I would rather have it sooner rather then later. On the days I am up many many times running to the toilet and feeling yucky in my stomach I am ready to be done. Then other days I am only going a  few times  and I hope it is ending. It never fails though as soon as it starts to look like I am getting better I nosedive back down. It is not severe but I do get tired to the yo yo between ok and not.
Posted 3/20/2010 10:32 AM (GMT 0)
     I can really sympathize with you mom Jnj.  I've been suffering with UP for over eleven years.  I am 63 yrs old.  My GI doctor has NEVER once mentioned surgery to me until after the Remicade failed.  He was sooooo pro Remicade and many of his patients had such wonderful results on it, he pushed me for two years to try it.  Prior to that, he had me on 6MP for about seven years.   The 6MP worked for maybe, two years and then I started flaring yearly, then twice a year.  Always back on the dreaded prednisone too.  The 6MP lowered my white count considerable after my doctor doubled my dose from 50 to 100mgm and it made me very sick...fatigue, nausea...just awful.  Plus my WBC was down to 1.6 and my bilirubin twice the normal amount.  I agreed to the Remicade in Nov.  He took me off the 6MP two weeks prior to starting Remicade.  I was still on about 30 mgm of prednisone when I started the Remi.  After the first infusion I felt like a million bucks, same thing two weeks later after the second.  Then I was weaned off the prednisone before my 3rd infusion.   After the 3rd...boom...started flaring again.  Seven weeks later 4th infusion, no better, back on prednisone.  Then my doctor FINALLY mentioned surgery.  Told him I am ready.  He did a flex sig a week ago Wednesday...my rectum is inflamed (no surprise) he had to put me out for the sig.  He said it is mild/moderate and asked me to try Humira.  OK...giving it a shot on Wednesday....but this is it!!!!! 
✚ New Topic ✚ Reply