Happy Tuesday, everyone!
Here is a recap on Lizzie...so much has happened that a little review is probably needed! First of all, however, Lizzie sends all of her love and thanks each of you for your support and prayers!! It really does mean the world to her, so thank you all so much!
Lizzie was at her home hospital. From there, they transferred her to LTACH (long-term acute care hospital) for the remaining time before her surgery. Things did not go well there. Doctors were not understanding, wanted to drastically cut her pain meds, etc. In the middle of her stay at LTACH, she was taken back to the ER with an obstruction. Colorectal admitted her for a couple days and things went really well. After that, however, they had to take her back to LTACH. After an inappropriate and unprofessional (and frankly, inexcusable) outburst from one of the doctors (cutting pain meds, questioning the meds Cleveland had put her on, etc.), Lizzie's family decided to bring her home. The additional stress brought on by LTACH was certainly not needed. When she left, they pulled her PICC line, TPN, and pain meds. Pain meds have to be weaned down, and TPN is the same way. Stopping either of those cold-turkey sends patients into withdrawal.
Lizzie has been home since last Wednesday (8/3), and she felt pretty good that first day. Thursday was not a good day, as the withdrawal symptoms really kicked up. On Friday, she saw a specialist for medication to counteract the withdrawal symptoms. The medication did a great job of knocking out the withdrawal symptoms, but of course, it comes with its own set of side effects- nausea, stomach pain, and decreased appetite. She definitely doesn't need any of those, so pray for that! This medication also has a bit of an analgesic effect. So far, it hasn't done much in that area, so pray that it starts relieving her pain as well.
Her surgery day has been moved to September 3rd. Her surgeon needs for her to be off the opiates for a month before surgery. If they were to keep her on pain meds until surgery, the meds would not work for the surgical pain. Lizzie is trying the best she can to manage the pain, but it is severe. On Saturday and Sunday, there were times with the stabbing pain doubled her over and brought her to the ground. Yesterday (Monday) was better, but she didn't move around much, and sitting still for almost a month is going to be very difficult.
Eating is hard. She gets full very quickly, and eating triggers nausea and pain. She is doing a great job of forcing food in, but it is really not a fun process. She is no longer on TPN, so getting calories in is completely up to her. Pray that eating would be easier, and that the pain and nausea would greatly decrease so that she can give her body what it needs to be ready for surgery.
Keep praying everyone! Pray for a smooth surgery and recovery, and that both would be free from any and all complications!!! Again, Lizzie sends her love and thanks for your support and prayers.
Many, many thanks, and love to you all!
Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later...
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.