I got the results back and heard that she has inflammation in her rectal area. They are starting her on Canasa suppositories. The pharmacy didn't have them and had to order them, so started them Monday, November 21. She was having diarrhea, sores on her bottom and felt a lump inside her. She is also having right lower quadrant abdominal pain (this is chronic, but was worse). She feels like the new medicine hurts now to put in, and doesn't really feel like it has helped. I'm waiting to hear back from the GI about where to go from here. We're also waiting to hear back about blood work she had last Monday, the 21st, for a mercaptopurine panel, liver enzymes and a fecal calprotectin.
I think it was a good thing that she didn't have to start those suppositories right away because she got her period the week we were waiting for the reorder. Her periods start major pain problems and flare up her Crohn's. She would not eat for a full 24 hours because she was hurting so bad and didn't want to aggravate it more. She has lost weight with all of this and is down to 117 lbs again. :(
Another good reason to not have to start the new suppository yet is that that week Pumpkin had to do another video EEG. It was put on Tuesday morning the 15th. She may have had one event on Friday night the 18th, and finally had a for sure seizure on Sunday morning and was able to take it off and have it off for Thanksgiving. If she didn't have one, she would have had to put it back on all new on the 21st and leave it on another week! We had a lot of people praying that she would have a seizure so she could take it off! The tricky thing about Pumpkin's seizures is that she has them at night, and so it isn't always clear whether or how much of them she is having.
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This is her with her EEG set up. It was really itchy and uncomfortable.
She is a ham and didn't let me take her picture but took these selfies herself.
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