I have been in a pretty bad Crohn's flare for over a week now, which happens to be the longest flare-up in quite a long time.
That severe burning pain has persisted and the only partial relief has come from resorting to a soft food/full fluid combination diet. So avocados, potatoes, soup, yogurt, pudding, and a tiiiiiiny bit of toast and peanut butter for energy. After being on that diet since Friday, I feel a touch better this morning. A touch.
The only big concern I have is whether or not the flare is from being pretty busy over a week ago for 5 days straight, if the decrease in pain medication has flared it up, or (worst of all) if the new Berinert regimen is causing the flare. If it is the last of the three, then I may potentially have to stop taking the medication, or at least wean myself down.
I have seen such a positive change in my HAE symptoms that I would hate to lose that medication... but I have such a long history of incredibly severe and uncontrolled IBD that I cannot allow my body to get to that severity again. It took two major surgeries and about 14 years to get it settled a little bit (not remission just more predictable and a bit controlled). The last thing I need is to experience severe urgency, incontinence, and dependency on corticosteroids.
Losing Berinert would be extremely frustrating, but it doesn't necessarily mean that I would not be able to take it at all, it would simply mean that twice a week is too much for my digestive system.
It makes me nervous, but I am preparing for all options.
This morning I am sitting here waiting for an MRI. It will be assessing my Ankylosing Spondylitis as well as the herniated discs in my spine and some other issues.
MRIs don't really bother me... I tend to fall asleep to the whirring of the machine. The IV, on the other hand, always makes me anxious. My veins aren't terrible... but they aren't very good either, so IVs are always stressful, painful, and sometimes nurses don't quite believe that the veins in my hand are completely obsolete.
Wish me luck!