Ostomy News Four Years After Permanant Ostomy Procedure

Hi-dee-ho!

My recent ileostomy tour of my small intestine showed that everything is looking pink and healthy. There are no signs of inflammation at the upper end, and only minor issues at the bottom end. I am happy to share that there are no issues. I continue to take Stelara monthly as my main treatment and a host of other drugs to combat my high output. Normal output is 800 ml a day. Mine is 1200 to 2000 ml a day. I know this because I have to pour it out of my Ostomy bag into a beaker to track it. It’s always a South Park Mr. Hanky the Xmas Poo situation waiting to happen in my bathroom.

Malabsorption and Opium

My issue is malabsorption. I lose more water than I can absorb. That leaves me chronically dehydrated, and my organs suffer. My kidneys are taking a beating due to the lack of hydration; I am getting some old-school treatments to try and slow down my digestion.

Opium

I am trying a novel treatment now that sounds very 19th-century steampunk worthy. I have a tincture of opium every day. It is supposed to slow down my digestive tract, giving me more time to absorb water. My husband was disappointed that it came in generic cough syrup style bottle with a dropper, not in a dragon shaped ceramic vessel shaped like a dragon with smoke wisping out of the nostrils. It's not covered by my drug plan. I will be paying close attention to see if it is worth the effort.

Everready Battery Bunny Not

I have stamina for about an hour before I need to rest. This week, I needed to sand and paint a wall where we put in a new AC unit. I made sure I had all the kit I needed to sit down in front of the work area and get it all done in one shot. It took 30 minutes. Then I tidied up the kit I brought with me, packed it all back to storage, and washed off my paintbrush. That took another 20 minutes. I sat down and was spent. I had to rest for a few hours. That's a good time to read, or plug into my IV for hydration.

Being tied to a stopwatch on my best of days means I have to be deliberate about planning activities. For example, the grocery store is a good block of activity I can handle. Multitasking is problematic. I have to consider restroom access and carrying a spare ostomy bag and clothes. On days I don't have the Mojo to tackle any tasks, I struggle with the frustration of being stuck sitting down or crashing on the bed. It feels like when you have the flu and you are too sick to go to work, but not so sick you have to be in bed. I call it Sofa Sick.

Dancing Like I Just Don’t Care

Sometimes when I feel sofa-sick, I will go out and do stuff anyway. I figure I may only be 70% there, but at least I am out of the house. I also like edibles. They sort of separate me from my aches, like being in the home office working on something at my desk, just far enough away from a distraction like the TV. I still feel sick; I just don't care. That is good for getting up and doing housework. When I don't care that I feel sick, I can push a steam mop around the living room to herd the dog hair into a hamster-shaped ball. I feel like something has been accomplished.

More to follow after my next IBD follow-up exam in 4 to 6 months.