I feel the same way I've felt the past couple of infusions. A definite improvement from the week pre-infusion where I could barely sleep let alone leave the house. I'm only waking up a couple times during the night but I'm just not where I need to be. It's hard to describe. I know I'm better but I'm not there. Considering I received double what I normally get and at 6 weeks instead of 8, it's just not cutting it anymore.
I'm frustrated. I haven't been able to run. If I want to go out for a walk to keep myself in decent shape, I need to forego food for a couple of hours before. I'm beginning to think I might need to walk the 13.1 miles in January rather than run. Physically I'm not where I was before. It sucks.
I think the consensus from most people I talk to is that mornings are the worst for people with Crohn's. Those first couple of hours, your bowels are waking up, you eat breakfast, and you spend the next 4 hours in and out of the bathroom. After that, if I stop eating I can make it through most of the day. I swear if it weren't for immodium I wouldn't be able to do anything. It slows everything down but you have to be careful how much you use it. Like anything, your body adjusts and becomes immune to whatever benefits it offers.
Unfortunately my stomach isn't settled down until somewhere between noon and 2 pm. By the time I can get out and take a hike or walk, it doesn't leave me much time before it gets dark. Needless to say I feel like my training has taken a huge hit. It doesn't help that our group sessions are typically very early in the morning where it is nearly impossible for me to be comfortable taking a 2+ hour hike.
I've told myself the past couple of times to just give the infusion a few more days to "take". But it's been a week and if it's not doing anything at this point, it's only going to be downhill from here. I know the process well by now. I'll feel OK for the next 3 weeks and then I'll be back where I was before, needing another dose.
I go to my GI on the 16th where we will probably make the proper steps towards getting insurance approval for Humira. I hope the approval doesn't take as long as it does for Remicade otherwise I'll be suffering well into the new year. If anyone is interested, you can check out the link to Humira's website specific to Crohn's. Here.
That's all for now.