Keep the prayers going for Lizzie! Placing the tube went well, but she is still having a lot of pain. They are transitioning her from 24/7 feeds to just running the feeds at night (higher volume because it's a shorter amount of time). Today they are also starting the transition to oral pain meds...pray that goes well and that her body absorbs them! She is still having low-grade fevers, but they're not sure why. CT and x-ray have shown that the tube is ok, but they did see a lot of fluid still in her belly, possibly from infection or her last surgery, or both. She is only 8-or-so weeks post-op.
Sarah, I am so sorry to hear about your friend. I will keep her and her family in my prayers...praying that her family would understand how she is suffering, and praying that she gets the treatment she so desperately needs! I know you are desperate to hear back from the doctors as well...please keep hanging in there! I hope and pray the doctor is just busy, but I also hope you will know quickly if a trip to London needs to happen so you can get there as soon as possible!!!
I think I am making a little ground with my parents, although it is hard to tell sometimes. My mom has been considering retiring, but the other day she was talking about not retiring and taking family medical leave over the summer if I have surgery. I think she is seeing more and more that I am not going to get better on my own, and that I have done everything I can. Pooping is getting harder and harder to do (always incomplete), and I get this strong rebound nerve pain and muscle cramps throughout my whole body. I have noticed my posture getting worse and worse too...the body's attempt at protecting the painful area, I guess. My dad is considerably more resistant. Not too long ago he accused me of being "fixated" on having surgery. I'm not quite sure how that can be because I usually only tell my mom how I am feeling (he can't handle the medical things because he's too squeamish), and we have had maybe three or four conversations about more surgery in the last year. I'm not behaving like a little kid who has the "gimmies" for a certain toy; I just want to feel better, and I'm not sure how that is being "fixated," especially since I have been trying to make this work since I had the total colectomy over three years ago. And I am doing all I can to move towards grad school. It really drives me up the wall when he acts like he knows all about motility disorders (he hasn't done one bit of research, and I know he hasn't read any of the studies my mom or I have). The "if you would just eat normally" speech is getting old! A 64 oz. porterhouse steak and a bucket of mashed potatoes won't fix this!! Grrr...ok, done with the soapbox ;)
Jen, because your gastroparesis is such an issue, I really would look into the neuro-gastro stimulator (gastric pacemaker) before having ileo surgery. From what I have read about it, and what Dr. Camilleri (enteric neurology specialist at Mayo) told me, they have had great success with the stimulator knocking out gastroparesis nausea. Is your pelvic floor normal, or are there problems there as well?
Boat, sounds like you're making great progress! Keep us posted!