Onward and Upward

I haven’t posted in a week, and that’s a good thing. I simply haven’t had much to report. My recovery continues to trend in the right direction. It’s not without the occasional hiccup, but it continues to get better day-by-day. Most significantly, we finally seem to have gotten in front of the multitude of issues I have had with my stoma. My last three or four appliance changes have been relatively easy and painless. I’m getting good pretty good wear (3-4 days). I haven’t had any leaks. And the skin irritation has improved significantly. So what changed?

First, I switched to a one-piece Convatec appliance with a slightly larger 1″ convex flange. Although the one-piece is not as convenient as the two-piece (e.g., you can’t “burp” the bag or adjust the alignment of the bag on the wafer), it has certain advantages—especially for loop ileostomies. As I’ve mentioned before, loop ileostomies are prone to complications because the small intestine is continually pulling the loop back inside your body. As a result, the stoma often sits just above skin level. In my case, this is exacerbated by the fact that my stoma opening (from which waste is released) is basically at skin level. Because a two-piece appliance needs to have a large plastic-ring for the bag to attach to, it acted as dam causing released waste to pool up before finally making its way over the plastic ring and into the bag. I believe that the constant presence of pooled waste caused the flange and adhesive to deteriorate more quickly, allowing leaks onto the skin around the stoma. The one-piece appliance does not have such a pronounced plastic ring above the flange and, as a result, waste is able to make its way to the bag more easily, without any pooling.

Second, after much trial and error, I’ve finally perfected my appliance change process. Here’s what works for me:

1. I change my appliance exclusively in the morning, when my stoma is least active. Interestingly, my stoma tends to have a last burst of activity immediately after I wake up, so I generally get up about 15 minutes before I want to change the appliance.
2. I remove the old appliance in the shower, making it much easier to thoroughly clean my stoma and giving it time to “air out”. It also makes it easier to shave the surrounding skin, which both allows the flange to stick better and makes it less painful to remove.
3. I allow the stoma to “air out” as long as possible (until it starts to show signs of activity), and I use a hair dryer to dry it out as much as possible before applying the new appliance.
4. I liberally apply stoma adhesive paste around the flange opening. Because the paste contains alcohol, it is important to apply it several minutes before the new appliance, in order to allow it to “de-gas” and avoid an uncomfortable sting.
5. I liberally apply stoma powder and non-sting barrier spray at least twice (sometimes three times) before applying the new appliance.
6. I stretch the flange opening slightly to make it fit the shape of my stoma that day (as it can change day-to-day).
7. After installing the appliance, I use the hair dryer for 15-30 seconds to heat the flange and then firmly press on the flange for another 2-3 minutes to ensure a tight seal.
8. Throughout all of the above steps, I eat marshmallows (probably 5-6 per change).

And that’s what works for me. It only took me 8 weeks to figure it out. As for everything else, I still have the odd day of weird aches and pains or extreme tiredness. I still have mucus release from the J-Pouch several times a day, which can be uncomfortable. And I still have back pain nearly every night (but either I’m getting used to it, or it’s become more bearable). I’ve been able to work full days at work (for the most part). I even had the pleasure of working all day on a Saturday (as my wife said, “I guess it’s nice to have ‘normal’ problems again”). Bottom line: it’s getting better, and each new day is generally the best I’ve felt since surgery.

I’m meeting with my surgeon on Friday to assess my healing progress. She’ll examine my J-Pouch and, if all looks good, we’ll schedule the battery of tests necessary to assess the the integrity of the J-Pouch and clear me for my takedown surgery. If everything goes according to plan, I’ll be able to have my takedown by the end of the month. But let’s not get ahead of ourselves—one day, one test, one examination at a time…