The long journey home.

After 20 days in the hospital, I am finally home. I have mostly been sleeping, since sleep in a hospital is rare and interrupted. At least four times a night a nurse or patient care tech [PCT] comes in to give medicines or check vitals. Plus mid-morning (aka 3am) blood draws makes it impossible to sleep through the night. It feels counterintuitive to healing, since sleep and rest are so important to the body restoring itself. But I also understand the need for consistent, continuous data. It’s strange, but I actually have found myself waking up and needing breakfast at 6am, just like while I was hospitalized. I’ve fought my body to just keep laying there, with no success. I guess I developed a habit.

While in the hospital I had a slew of medications added to try and slow down the output from my ostomy. On my worst day I emptied my bag enough to amount to 9L! A normal ostomy should only put out 500mL-1L per day. A “high-output ostomy” as defined as anything greater than 1L… so 9L is very dangerous. My blood pressure was unstable every time I stood, at worst dropping to 77/40. It took continuous fluids to keep me hydrated. It took well over a week to have any improvement at all. After two things started to improve and I had closer to 4L of output daily. At discharge it was still over 3L, which would be out of control for most ostomates, but the doctors all believe this is my new “normal.”

Some of the daily medicines I am using to slow my output include Lomotil, Imodium, and Octreotide. They are all anti-movement agents in the GI tract. Octreotide is an injectable medication that has to be administered three times a day. While it is painful, and mildly frustrating, to receive it so often it has really helped in slowing my motility.

I also have home health now that administers fluids via a mediport. The port was placed on 7/23/19 and has been life changing! No more fruitless IV sticks, no peripheral blood draws, just accessing my port. It is painful when it is originally accessed (which has to be done weekly while receiving medicines) kind of like a swift kick to the chest. But once the needle is inserted there is no pain. And no limit to what can be given/how much blood can be taken. The fluid infusions do take quite a bit of time, requiring at least eight hours of stationary activity to complete. I require the infusions twice a week at this point, but as the output lessens I won’t need as much help.

I received my medical alert bracelet today and I really love it. It is delicate and dainty, but still provides all the necessary information. While I would prefer not to be suffering from a life threatening condition, it is great that there is some joy in the process. I love jewelry, so I searched for a long time to find the right manufacturer to complete my order. I ended up using CodeBlueJewelry on Etsy. They have an assortment of options and even the alert sign/font are customizable. I would recommend them to you if you are in need of a med alert bracelet.

I had my first follow up doctors appointment, with about six others scheduled in the next three weeks. It was with my colorectal surgeon who completed my ileostomy. We discussed options for my rectal pain and bleeding. Her recommendation was to remove the rectum when I am more stable/healed from this long hospital admission. She explained the scope of the surgery and the recovery process, plus the risks and ramifications, in great detail! So much so that I am hoping not to have the procedure and that the high doses of steroids I am on will heal the problem. This thought may be a long shot, however, since my last sigmoidoscopy showed inflammation despite medication. It makes me nervous to think about going into another surgery. The long recovery and high amount of pain are the main deterrents.

The appointment and travel took about four hours total. By the time I got home I was so exhausted I had to sleep immediately. I ended up sleeping for the same length of time as the appointment process! I am now still resting, although I was able to complete a load of dishes and switch the laundry. While that does not sound like a huge undertaking for a normal day, it was massive to me since I am still weak. I am grateful for this period of rest, but am frustrated by the length of time it will take to regain my strength.

Overall, I am improving. And I now have more tools to use to help in that process. But the journey will be long. With what feels like a marathon of a hospital stay behind me, I know it is only up from here.

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