On the morning of November 2 I woke to a Facebook chat from Rachel. She and her boyfriend were in the emergency room at Beth Israel Hospital. She was experiencing an intestinal blockage, for which she's been hospitalized three times in the past since her j-pouch surgery. They kept her pretty comfortable during the day with morphine and she thoroughly expected to be admitted and observed while the blockage passed on its own, as has been the case in the past. She had a CT scan but the image was hard to read as the barium hadn't gotten to where it needed to go. As the day progressed her pain became much worse and morphine was no longer helping so they did another CT scan and discovered that she was blocked in two locations and her small intestine was twisted in loops. She was told in no uncertain terms that if she didn't have immediate emergency surgery she would die. At this point it was late in the evening and they had to call in a surgical team. Kevin was on a business trip in Maryland and headed for home. We got in the car at midnight after having been up since early morning and began the 10 hour drive to Boston. Rachel was in surgery from around midnight until about 2:30 or so and Rachel's boyfriend kept us informed as we drove through the night. We got to the hospital around 10:00 the next morning in time to meet with her surgeon. It appears that Rachel had a really huge amount of scar tissue that he described as a "Maypole" from her previous surgeries and her intestines had gotten tangled around it in two places and a hole had formed in between the two loops. They were able to remove the scar tissue and repair the hole and the surgeon felt very confident that this was probably what had caused her other blockages. We are certainly hoping that's the case and that this new surgery does not create more scar tissue. They saw no signs of inflammation or Crohn's disease while they were in there, so this blockage was totally the result of scar tissue. That's a relief.
In all, she was in the hospital for 8 days. We stayed for the first two and actually clocked in at 38 straight hours of awake time, which is the longest I've ever stayed awake! it literally has taken me all month to recover from this! She took a week of disability and yesterday was her first day of working from home. Thankfully, she's a software engineer and can work remotely. She's hoping to make it into her office at least a few times next week. It's been a long slow recovery as abdominal surgery always is, but she's kept a good attitude and this experience has brought her and Matt closer together. He's been wonderful and has really stepped up to care for her,which includes packing an abdominal wound twice a day.And it was probably good for him to experience this as the partner of someone who has IBD. Life can be pretty unpredictable and there are definite challenges that go along with the diagnosis. He now has an appreciation of what her high school years were like and what her challenges have been and may still yet be.
Anyway, I'm glad she's on the mend. She sat in her hospital bed on election night and wept as Donald Trump became our next president. She's fearful of what will happen to the ACA, and though she's on her company's insurance she worries for her pre-existing condition and the cap that she may have already met. She's only 24 and has a lifetime of caring for her body. She wrote a very heartfelt letter about wanting to be an ACA poster child for sick young people and she posted it on Facebook and sent it off to various media. The Washington Post asked her to take her letter down from Facebook as they are considering publishing it in their letters to the editor. I'm so proud of how she's learned to advocate for herself and others. Her career in software engineering has been in the healthcare industry and she is working on tools to help patients track their illnesses and form support groups.
Well, thanks for sticking with me this long! What a fall! First we lost our beloved Zip, then Rachel went through life-saving emergency surgery, followed by a Trump victory. Could life get a little kinder?