by Spoke with the Doctor on the phone today, about my yearly Crohn’s Disease routine follow-up. It was 1-2 months early this time; usually it’s in January or February.
- all other labs are okay except:
- ferritin is low again and Tfr is elevated which means:
- I’m going to get an iron infusion!! 😃
- the bowel symptoms are as they have been since about February 2022, no change in the symptoms and the labs show no inflammation in the bowel so good on that front 😃
- going forward, liver security blood labs will be taken every 4 months now (was 3 months before), and a year from now, another phone or in-person appointment with a wider panel of blood and stool labs taken prior
- Imurel medication continues as-is, Lopex continues as-needed
- and of course, if symptoms worsen, anything new bowel-y crops up etc. then call them about it
I’m so happy about the iron infusion ✨ I got one in February 2022 and then again in February/March 2023, but not this year and my iron levels have been worsening the entire year. I did feel better, and slept better after the iron infusions even though they didn’t remove my tiredness/exhaustion, but did make it less worse.
Now I’ve been even more tired than usual again since about September, and the last 3 weeks, I sleep about 14-15 hours a day, most days. Also, I’m getting restless legs back again, which have been gone for about a decade.
In hopeful but weird news… it looks like energy drink may be of help with my background headache/migraine?? The one that I have on 24/7? I’ve been drinking one that has both taurine and caffeine in it 2,5dl every day for 2 weeks now, and my need to use Burana has almost halved and my head feels lighter and less achy? There’s even been several days when the ache has been nearly gone for most of the day? Is this for real?!
I don’t drink coffee (I don’t like the taste and I don’t like hot drinks) but in desperation I’ve tried coffee and caffeine tablets before with zero effects on headache or migraine, so I didn’t think this would help. Just tried for the hell of it! Maybe it’s the taurine? A lot of people in the migraine support group swear on energy drinks but say that it must have both taurine and caffeine or it won’t work for them. Who knows! I’ll keep on it, and the iron infusion will maybe help a little bit with too.
