We made it home without incident. It was a nice feeling to take an hour-long drive without having to worry about whether I’d need to find a bathroom. Granted, I’m carrying mine on my hip, but it’s still nice not to worry. As I’ve mentioned before, that constant fear is one of the most debilitating aspects of ulcerative colitis. But I’m now cured of ulcerative colitis—no colon, no colitis. I probably should have mentioned that earlier. Gone are the terrible mornings, the crippling cramps, the blood, the diarrhea, the fear of leaving the house. That is a very good thing.
Of course, there are plenty of new things to consume my days. The pain from the surgery remains and was pretty intense last night. I slept on an adjustable bed in the hospital with my upper body and knees slightly raised. When I laid down on my bed at home, I was too straight, and it hurt. A lot. It felt a bit like my torso was being stretched out on some medieval torture device pulling on each of my limbs. I took another Norco and tried to tough it out, but I woke up with tremendous lower-back pain after a few hours. I was unable to get out of bed or sit-up and ultimately had to wake up my wife to help me adjust my pillows. After we propped me up a bit, the pain dissipated and I was able to sleep. Given how quickly the pain was relieved when I was repositioned, I think the pain was caused not only by the “stretching” I described above, but also the functioning of my small bowel and ileostomy. When I was laying prostrate, there was virtually no production or activity from stoma, and I think it may have essentially stopped working, allowing gas and pressure to build, which in turn caused some of the pain. After I was propped up a bit, things started moving again almost immediately. At this point, all of this is just theory, but I will definitely be watching ileostomy function, body position, and pain to try to identify any correlation. It’s a learning process, to be sure.
I’m also still experiencing the pressure/bloating/phantom rectum/???? pains in my lower stomach, and they too were pretty intense yesterday evening. I’m still not sure what to make of them. It begins with a slow build of gas/pressure, which culminates in a sharp—almost shooting—pain at various points in my lower torso and a downward pressure on what I think must be my J-Pouch. After the pain peaks, it typically passes relatively quickly. Despite my best efforts, no gas or liquid ever passes through my J-Pouch and when they intubated my pouch in the hospital, very little fluid was released, so it’s tough to know whether the pressure is actually from within the pouch or outside of it. My surgeon thinks it’s likely from outside of the pouch, and I tend to agree, given the fact that nothing ever seems to pass from the pouch. Everything is so tightly packed down there (stomach, small bowel, J-Pouch, other organs) that it’s really tough to pinpoint the source of pain by location alone—and the location of this pain seems to vary. As such, I am beginning to think that the pain is actually related to digestion and food passing through my small intestine towards my ileostomy. It’s difficult to describe, but I can actually feel the food moving though and making the turns as it heads to the ileostomy. I think the pain I’m experiencing may be related to gas (or even a slight blockage) associated with food moving through my new system. Again, mostly theory at this point, but something I will definitely be keeping an eye on. I am keeping a log of my meals, stoma output, and physical symptoms—both to keep track of my recovery progress and to identify likely sources of any complications I experience.
Notwithstanding all of the above, it’s good to be home. My mom flew home today, so it’s just me and my wife for the next week or two. I can’t say enough how much the support of my wife, family, and friends has helped throughout this process. Some of the most difficult sights in the hospital were the suffering patients whose only visitors were the nurses and patient care assistants, and I’m grateful I didn’t have to do this alone.
My home health care nurse is coming later today to assist me with the ileostomy and JP Drain and to go over my various supply options. You’d be amazed at the number of options there are. Big business these ostomy supplies. I’m doing pretty well with the ileosotomy and don’t anticipate needing the home nurse after today (especially since my wife will be home with me for the first week or two), but it’s definitely nice and reassuring to have the option.