HealingWell
Search Close Search
☰

UPDATE NUMBER 2

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/4/2012 2:21 PM (GMT 0)
So, they are upping my remicade to 10kg every eight weeks.  This kind of sucks because I can't go any higher on the dosage. Ugh!!! They are also doing my scope when my doctor gets back from maternity leave in Feb. 2013.  She doesn't want anyone else doing my scope.  I will get one down the throat and a colonoscopy. I don't look forward to these. Ugh!! So, I guess the remicade is not working that well anymore and I am not really hopeful that the 10kg dosing will help that much.  My mom said I better prepare myself cause if my scope isn't alot better than last time(which was horrible severe uc thoughout my whole colon with eiosiaphils) I am going to have some decisions to make.  I am starting to get bad so I can tell you I will not live like this for long.  I am even scared to pick my kids up from school cause i don't want to have an accident.  That is pathetic.  Ugh. So, I am hoping this works but I am looking into other options as well.
Posted 9/4/2012 2:30 PM (GMT 0)
Oh, MOM, I feel for you. I completely understand your fears and frustration. Prior to my surgery, I was afraid to go get the kids too! I even had a couple of times where I had to race back home, and one time that I had an accident just before the bell rang. I had to leave and call another mom to grab my kids.

It is a horrible way to live. It's just awful for the you and your family.

I hope you can find some relief with the increased Remi. Can they move you to 10mg/kg every 6 weeks, instead of 8?

From my point of view, the surgery was the best thing I could've done. I truly have my life back, and have adjusted happily to the bag. I can do everything again, and I never need to worry about where the washroom is. If you are considering the surgical option, it is not as scary as it feels before you have it. Does that make sense?

Good luck.
Posted 9/4/2012 2:44 PM (GMT 0)
I was in the same predicament as you with the remicade. So sorry you are going thru this. I remember picking my kids up from their karate class and not being able to make the drive home without having an accident. It was awful.

Like mom2panda, having surgery was a life saver for me. I just wanted to give you some encouragement that if the Remicade doesn't work out and you have to explore surgery, it can really be a blessing in disguise. As scary as it is, you will be done with UC forever. All the best to you.
✚ New Topic ✚ Reply