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Remicade resistant, Entyvio? vs surgery

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Ulcerative Colitis
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Posted 1/14/2015 1:23 PM (GMT 0)
Was on Remicade for UC. not working and Dr wants to put me on 6mp and Entyvio. considering surgery...

Advice...
Posted 1/14/2015 1:42 PM (GMT 0)
Entyvio
Posted 1/14/2015 1:55 PM (GMT 0)
Try the new drug. If it fails then surgery can be a huge blessing. Love my j pouch.
Posted 1/14/2015 3:09 PM (GMT 0)
It obviously depends how fed up/sick you are, but I'd try entyvio first without a doubt
Posted 1/14/2015 5:13 PM (GMT 0)
I'm on Entyvio as my last resort, it's not working for me and my GI wants me to get a surgical consultation
Posted 1/14/2015 6:43 PM (GMT 0)
Is the Remicade the only biologic you've tried, or have you been on others before? Did Remicade (or others in the past) work for a while and then stop, or have they never worked?

For me, I left options "on the table" and had surgery without ever trying Humira or Simponi, because I had already failed two biologics, they never worked in the first place (so it wasn't a tolerance issue), and I was completely miserable. If not for all those factors, I probably would have tried another drug first.
Posted 1/14/2015 8:48 PM (GMT 0)
Wanting info about the actual surgery... pain and how awful poop bag is before having 2nd surgery. What can I expect....
Posted 1/14/2015 9:14 PM (GMT 0)
You should head over to the ostomy forum to ask questions. I'd be a little more tactful before saying how awful poop bag is because some of the people there have permanent ostomies due to other conditions or by choice.

I never looked at it as awful, I only looked at it as temporary. Actually it was so much better having an ostomy then living with severe UC. If I was told today that I needed to go back to an ostomy it wouldn't be the end of the world to me. Living with an Ostomy was good but I prefer my j-pouch.

Pain wasn't much of an issue for me, I'd usually leave the hospital needing minimal or no pain meds at all. The surgeries do take some time to recover from but by the time you leave the hospital you are all ready 75% recovered and can go about most of your normal daily business.
Posted 1/15/2015 12:00 AM (GMT 0)

Crappycolon said...
Wanting info about the actual surgery... pain and how awful poop bag is before having 2nd surgery. What can I expect....

I unfortunately had to have emergency surgery after a bowel resection due to a leak. I had no choice to get a bag...something I never wanted. I had mine for about 4 months before I got it reversed. Once you get the hang of it, it's honestly not that hard to deal with at all and it becomes second nature.
Posted 1/15/2015 12:01 AM (GMT 0)
I am in the same boat. Remicade didn't stop my symptoms. I made a consult to meet a surgeon and I am going to try entyvio. My symptoms aren't even bad so it all seems like overkill at the moment but I think I would feel better to know I have options if it gets to the point where I need them.
Posted 1/15/2015 3:43 PM (GMT 0)

Crappycolon said...
Wanting info about the actual surgery... pain and how awful poop bag is before having 2nd surgery. What can I expect....

of course things won't be perfect with a bag, you'll probably have leaks and other common issues associated with it but it honestly wasn't too bad for me. I had my bag leak in the middle of the night while I was sleeping...it happens. I've woken up in the morning and it was so full of gas the bag was ready to pop like a balloon. I used a 2 piece bag which allowed me to remove the bag portion and leave the flange glued to my body. I could change the bag more often than the flange if needed. There are times when you change the flange it will be somewhat messy, others it will go smooth and clean. There are lots of tricks out there to help
Posted 1/16/2015 12:17 AM (GMT 0)
If you are curious about surgery than checkout j-pouch.org, the ostomies forum on hw and blogs of the many who have gone through it. An example ronnielee-fightingforit.blogspot.com/2012/10/surgery.html
Surgery is a huge improvement for many who have failed medical treatments for uc. However, surgery will not return you fully to your pre-uc days. You have 4-6 non-urgent poops a day, sometimes have to go in the middle of the night. Surgery has risks. Pouchitis and some other complications that can happen afterwards. It's not perfect but a huge improvement for those that the uc meds do not work.

You can try simponi, humira, and uceris if you still want to fight uc.
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