With careful attention, I have been able to avoid acute attacks for several months; though, I still have to deal with the general yuk that I feel all the time. I know that the type that I have is Acute Intermittent Porphyria; but, I am convinced that the problem is chronic…the acute attacks are intermittent.
What I have to do is eat every couple hours and avoid any porphyria triggers and anything that will cause diverticulitis. And, I have to check on glucose tabs or drink water with glucose mixed in; BTW – drinking a lot of water is necessary, too. Needless to say, my diet is boring. Start the day with vegetable and chicken soup (very little liquid to solid ratio) over pasta. The next meal will be a turkey sandwich; and a couple hours later, I’ll have a baked potato and some chicken. …repeat every couple hours, keeping in mind to keep the carb to protein ratio high… I get so tired of eating. Snacks that work are (low fat) Trisquits, York Peppermint Patties, and some low fat devil’s food (sorry God) cookies from Publix. And, I have to remember to eat something right before bed, so that I don’t wake hungry in the middle of the night.
So, last night I am munching on Trisquits right before going to bed. Then, I realize that I hadn’t eaten my meal before bed; so, I thought a little protein to go with the Trisquits would suffice. Bad idea, the pain started right after I lay down. Donnatal and about 8 glucose tabs later, I was good.
I shouldn’t complain; there are so many porphyria sufferers that have it much, much worse. My heart goes out to them.