Posted 8/27/2014 3:38 PM (GMT 0)
No, you are not a failure. I've experienced a lot of fatigue in my life,too. It's good that you have an appointment to see your doctor soon so that you can stay on top of this.
In terms of fatigue, my experience is that we can get hit with a triple whammy of contributing factors.
(1) Have you been tested for anemia? Crohn's patients can have deficiencies in both iron and B12, which can cause fatigue. For iron supplements, I take a daily multivitamin that contains iron already (chewable Flinstone). For B12, it's the terminal ileum that absorbs this vitamin. So, if it is in bad shape, you'll need monthly self injections of B12. I've been taking these since 2009.
(2) How's your diet? Both the types of foods you eat and the amount of food you eat? I find during a flare that I lose my appetite. Or even that eating becomes painful. If you are not getting enough calories, that could be contributing to your fatigue. It may be helpful to switch to a low residue or even a mostly liquid diet. But then, low residue diets and especially liquid diets may have even less calories than a regular diet.
For example, over 3 years ago I started tracking how many calories I ate each day and found myself severely deficient. I couldn't necessarily eat more either, but I did start drinking more Gatorade and Powerade during the day. I also started drinking Ensure/Boost daily, which are 250 calories drink supplements, starting with one a day and eventually increasing to 4x/day. The Ensure/Boost type drinks are fortified with vitamins and minerals like iron, so this, in addition to my multivitamin, helped boost my iron levels.
I didn't go pure liquid during this time, but I recall that about half of my daily calories were coming from liquids.
I have gone pure liquid for a day or two in the past. Maybe over a decade ago was the last time I did this: Basically, I'd treat it like I did when I was a kid with the stomach flu. Just broths, jello and gatorade ("clear liquids) for a day. All liquids the next day. Then graduate to scrambled eggs, toast, soup with noodles, crackers, etc on the third day. You don't have a lot of energy the first couple of days of this diet, but then I treated it as if I were recovering from the flu...didn't go out, stayed on the couch. It seemed to work for me and give my guts a chance to relax and recover.
(3) Chronic pain can cause fatigue, too. It's difficult for many to get on the right treatment course at first because we all respond to the drugs differently. Given that you did have a good response to Humira, there's a good chance that either tweaking your current treatment to inject more frequently or switching to one of the other biologics will give you a similar remission experience.
Good luck with your doctor's office visit!