I'm back!

It's probably been about 2 years or so since I've been back. I'm happy (and sad) to see many familiar faces. Sad because that means so many of us are still sick. :(

Around December 2010, I stopped taking all my medications (I was mainly on 6MP) and I somehow ended up in remission with no medication for almost 2 years. Prior to that, I was flaring for about 8 years. A flare for me means bleeding, every day!

The last two years were such a blessing and I thought my 8 year struggle with UC was just a bad nightmare and was over. about 5 weeks ago, I started bleeding again. I saw a new GI and he scheduled a colonoscopy for the next day. Sure enough my UC is back. I wanted to try 6MP again since I had somewhat of a success with it in the past. I've spent the last 3 1/2 weeks so sick. I was extremely tired, like nothing I ever felt before. I had no appetite and just felt horrible. I finally came to the conclusion that it wasn't the disease causing these feelings, it was the 6MP. I stopped taking it on Monday and now today is the best I've felt all month. I still have all of my UC symptoms (bleeding mainly - about 6-8 times a day going to the bathroom just to pass blood) but I'm feeling so much better now that I'm off the 6MP.

I guess this is good and bad news. The good news is the disease isn't making me feel horrible but that means I can't tolerate 6MP. What do I do next? My doctor is pushing for Humira but I am scared and just don't feel sick enough. We agreed for me to try Cortenema and Entocort to see what happens. I will follow up with him in a month. No other medications work for me, most make feel worse than the disease. Why do the Humira warnings have to be so scary? lol

I would wonder if you can say if there has been anything you have been doing, eating, drinking or whatever that brought back on the flare.
Sorry it happened.

DMC2011 said...
I would wonder if you can say if there has been anything you have been doing, eating, drinking or whatever that brought back on the flare.
Sorry it happened.

The IBD gods brought her back here, what did you expect. They were looking through records and they noticed glamour girl has been too long away from this site. Then, they pushed a button and here she is.

Welcome back! Have you been keeping a food journal?

Hey glamourgirl, I am happy and sad to see you back. It has been a long time!! I don't think Humira is a bad idea but give the cort enemas and entocort a try, hopefully you can get things back on track. The problem is that, even if you are able to get into remission with these treatments, what will you use to keep you in remission after you taper off? I am hopeful you're able to maintain with diet or something non-medical but I don't see that being the case for too many of us unfortunately. It happened to you in the past so maybe it will again.

I was on 6MP when I went into remission last time. I stopped taking it about 2 years ago because I was having problems with the side effects. Somehow I managed to stay in remission for those 2 years. There is nothing that I can pin point that brought on the new flare up. I have always been able to eat what I want and during my 2 years in remission I wasn't on any special diet, natural remedies, etc. I just started bleeding again and it's gone downhill from there.