Since Monday, all had been going swimmingly. Really, it had been too good to be true, and I was always left wondering when the badness would hit. Last night, I received my answer.
The difficulty began with my first solo ileostomy bag draining. I sat on the toilet, struggling to get the bag open and dump the contents into a plastic container (the hospital keeps track of everything that goes in or out of me). Having shifted to a more nutritious diet, the smell of tar black, liquid stool was noticeable for the first time. I spilled some and some got my fingers. I had a hard time cleaning and reclosing the pouch. It just wasn’t working right. I started crying. Is this my new life? It is for the next couple months, I suppose—though I know it will get easier.
From there, the night went downhill. I started experiencing bloating and cramping pains in my lower bowel. Except I don’t have a lower bowel. It was my J-Pouch. My surgeon had warned me that there may be some discharge, mucous, and other materials from the pouch after surgery, but it was disconcerting nonetheless. And it hurt. I tried to get up to make it to the restroom. After a 10-minute adventure, I made—nothing except more pain from all of the activity. After laying down again, the sharp, cramping came back and a puddle of liquid fell out of my J-Pouch. It was definitely nice to relieve the pressure, but equally not nice to be laying in a puddle of mucousy stool. This happened three more times during the night, each time with an increased volume, of discharge, and each time requiring a call nurse to change the pads on my bed and help clean me up. Humbling.
Making matters worse, the patient in the room next door has significant lung problems and spent the entire night coughing the most horrible coughs I’ve ever heard. I thought he might choke to death. There were no open rooms, so I was stuck, and it was impossible to sleep. I eventually fell into a morphine-induced quasi-sleep, only to wake up with intense pain from my catheter. The clip that holds my stoma bag shut had become tangled with my catheter line. Horrible.
Before I knew it, it was 6am rounds, and I’d hardly slept a wink. After briefly chatting with the residents, I tried to go for a lap around the floor, but got extremely light-headed and nearly passed out before quickly returning to my room. It had been a rough night.
I started today with a fresh start and an open mind (after a bit of venting). I’m now allowed “full liquids,” meaning I can have cream of wheat and yogurt, in addition to broth, Jell-O, etc. More nutrition makes a big difference, and I felt better almost instantly. My surgeon stopped by and reassured me about the pouch leakage and reiterated how pleased she is with my progress. They’ve reduced my IV fluids to the bare minimum necessary to keep the morphine pump going and they are transitioning me to oral pain meds (Norco) and steroids (prednisone). So far, so good, and everything seems to be getting absorbed—no blockages and not passing straight through the stoma. I changed my ileostomy bag on my own without incident (with the help of my wife, who has been a lifesaver through all of this). And the guy in the room next to me has been working with a breathing specialist all day and is sounding much, much better.
Back on track.