Things have been pretty rough lately, and I’m running out of ideas and patience. I just sent the following email to my surgeon’s office. Perhaps they’ll have some answers (but I fear not)…
Hi [Nurse Practitioner],
Things have only gotten worse since I saw you Thursday. I’m still going to the bathroom 30-40 times a day, including 10-20 during the night. Some of these result in little or no output (or only gas), but it doesn’t make them any less necessary. My butt is in constant pain — both externally from skin irritation (which is unpleasant, but manageable) and internally from the constant pressure I experience on my J-Pouch (requiring constant clenching) and the numerous trips to the bathroom, many of which end in a fair amount of strain/pressure to pass anything. I’ve tried the different positional techniques to no avail. I’ve also experimented with Imodium and Metamucil dosing, but haven’t found the right formula (I’ve never gone above 4 Imodium in a day, so I suppose I could try upping the quantity). I’ve adhered strictly to the low-residue diet and have introduced very few new foods. The pain/pressure is worst when I sit or lay, to the point where I find myself pacing around the house because it’s the most comfortable “position.” I’m drinking fluids, but am afraid to eat, because it is so unpleasant after the fact (which I know is unsustainable). It’s only been two weeks, and I’m trying to stay positive, but it’s becoming increasingly difficult to do so. I’m tired, fatigued, and in near-constant pain/discomfort, and not sure what to do next or when/if I might see signs of improvement.
Not sure if this is all par for the course or if there are any other things we can try, but I’m up for anything at this point.
UPDATE: They responded promptly (as always), and here’s the plan: We’re stopping the Metamucil, increasing the Imodium to 2 before each meal and at bedtime, and I’m meeting with my surgeon on Friday.