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Ulcerative Colitis
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Posted 4/3/2015 6:24 PM (GMT 0)
Hi guys. I am just coming to say, UC sucks lol. I'm tired and over it. I am starting to think I am doomed for life. But on the other hand I have a good life besides UC. But just over it, hate it, tired. I am understanding there really is no cure. But at least I have a family that loves me. Haha sorry for the downer, I'm just like seriously.
Posted 4/3/2015 6:32 PM (GMT 0)
I woke up one morning almost five years ago and said the same thing...I'm done! Called my GI...asked for a referral to a great surgeon. Went to see him and two weeks later I was on the operating table. Wish I hadn't waited so long! My life has been returned to normal thanks to my j pouch. I hope you find relief soon one way or another!
Posted 4/3/2015 6:42 PM (GMT 0)
Welcome to the club! Pull up a chair, just give me a heads up if your gonna be in the bathroom to long. I'll take a xanax, lol.
Posted 4/3/2015 6:51 PM (GMT 0)
I decided when I was first diagnosed that if this stupid disease invaded every single part of my life and I was living in the bathroom and couldn't do the things I enjoyed then I would have surgery. I am lucky to be in remission but I know things can seemingly change overnight and if meds aren't going to do a quick turn around for me then I'm not putting off surgery.
Posted 4/3/2015 9:49 PM (GMT 0)
Exactly where I am right now. I'm over it all. At least we're not alone!
Posted 4/3/2015 11:10 PM (GMT 0)
"...I'm just like seriously..." Hahaha

I think you've got it! :)
Posted 4/6/2015 1:55 AM (GMT 0)
Haha. For real you guys. Sometimes I think I want surgery because it is a nuisance in my life 24/7
Posted 4/6/2015 2:34 AM (GMT 0)
You are. Not finding any relief from the meds you are on now? How bad are your symptoms?

24/7 ?

Man!
Posted 4/6/2015 2:51 AM (GMT 0)
Chrissy, I just recently got into remission after a very long, intolerable flare so I understand how you feel and I would never tell you that surgery is the wrong decision, because often it's a good decision. I have to say, after everything, I am feeling like my UC is in better shape than it's been in a LONG time. the problem is, how long do I get of this? When it returns, will it be impossible to manage? It's very questionable. Anyway, whatever you decide, I get it. I can relate to wanting to be done with it and I also relate to wanting to try to get things stable and hope for the best as long as possible. I feel like it's all the roll of the dice with this illness, when will it rear it's UGLY head again? no one knows... I hate the unknown but surgery is also an unknown. I feel like there is no great answer. I just hope you get a great remission for a LONG time so you can make your decision in your own time, and it's not forced on you. I am sorry you haven't have the luck others have. AntiTNF meds didn't give me the remission I wanted or expected either :( I am having much better luck with entyvio.
Posted 4/6/2015 4:39 AM (GMT 0)
Dmc- that was an exaggeration, but I still have a lot of urgency, diarrhea, and bleeding regularly

Notsosickly- I know what you mean, I feel those same things all of the time. The meds keep me in a somewhat stable place but still a lot of inflammation going on. I am really dependent on imodium to get through work etc. I didn't know entyvio is not antitnf?
Posted 4/6/2015 2:10 PM (GMT 0)
Entvyio is a different class of biologics. It targets gut-specific tissue only, leaving the rest of the body alone. It is a madcam1 targeting medication, or an anti adhesion medication (not anti-tnf like hunira, remi, simponi are). Entvyio blocks lymphocytes (white blood cells) from exiting the blood stream when they reach gut-specific tissue. They'd normally adhere to the walls of capillaries, and pass through the wall into gut tissue. Entvyio stops that adhesion, keeps lymphocytes in the blood stream, so they cannot attack gut tissue, cause inflammation, ulcers, bleeding, etc.

Entvyio is worth a shot if the other biologics no longer or didn't work for you.
Posted 4/6/2015 10:05 PM (GMT 0)
Ipoop- thank you :) I had no idea, that's great I have that option too.
Posted 4/7/2015 1:34 PM (GMT 0)
I've been dealing with UC for 22 years. I had my 4th Entyvio infusion a few weeks ago. I wouldn't say that I'm 100%, but I'm getting better. WAY BETTER! I haven't had any side effects besides feeling fatigued the day of the infusion. If it were me I'd try it before taking the surgery route.

Call Entyvio Connect and talk with a case worker. They can answer all your questions. Also, join the facebook group "Entyvio Warriors".
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