A little colon humor passed on by a friend. Enjoy…
Support Know Guts
A little colon humor passed on by a friend. Enjoy…
As predicted, the new ostomy appliance we decided to try to assist with the healing of the newly formed hole in my skin near my stoma failed. I’m not sure when it started it leaking, though I suspect it was early on, but by 1am, it was a complete (and fairly epic) failure, requiring a middle-of-the-night shower (to clean the wound) and appliance change. For now, I’m just using my standard 1″ Convatec convex wafer, but am planning to change it every 2-3 days (instead of every 4-6 days as I had been doing). I’ll take slower healing over a leaky appliance any day.
The worst part about my exam under anesthesia today was having to get up before 5 to make it to the hospital by 6; the procedure itself went off without a hitch (though I do have a banging post-anesthesia headache). My J-Pouch looks perfect. The minor irritation/inflammation they saw last time they looked (which itself wasn’t much cause for concern) is gone, and everything is totally normal. I am cleared for take-down surgery. But because we still haven’t really figured out what went wrong last time, if I decide to go forward with it, my surgeon will probably go in through my
stomach abdomen (laparoscopically) to check the pouch from the outside, before going forward with the take-down. Still not sure what I’m going to do regarding the surgery. Probably keep thinking it over.
After the EUA, I went to see my nurse at the surgery clinic across the street so she could examine the newly formed hole in the skin next to my stoma. We removed my appliance, and she agreed it looked pretty gnarly, but it didn’t look infected. To be safe, she put me on Cipro to knock out any bacteria, and I’m trying a new appliance, which has a much thinner and more flexible wafer. The hope is a more flexible wafer will lessen the pressure and irritation on the damaged skin, allowing it to heal. I had been using a convex wafer, which works well for ileostomies, because they typically sit closer to the skin than colostomies. But my ileostomy sits up tall and proud, so we’re trying a regular wafer. So far, I don’t like it at all. It doesn’t have a belt attachment, which I’ve grown accustomed to. And I’m pretty sure the wafer is going to leak. But I’ll give it a shot. Other than that, the treatment is the same — calcium alginate, powder, barrier spray, and paste…
In an unwelcome development, after months of smooth sailing, an issue has developed on the skin surrounding my stoma. More specifically, a hole has suddenly appeared. About a week ago, I noticed some minor skin irritation and a slight divot to the left of my stoma when I was changing my appliance. Not thinking much of it, I applied additional stoma powder and barrier spray and went on with life. Yesterday, when I took off my appliance to take a shower, what was once a small divot was now a small (and fairly deep) hole. Ugh.
Having become all too familiar with wound care after my last surgery, I didn’t freak out. I dried the inside of the hole as best I could, and my amazing wife helped me to pack it with a combination of stoma powder, silver nitrate (to prevent infection), calcium alginate, and stoma paste. No big deal. Until this morning.
I stepped out of the shower to find some milky white liquid oozing under the left side of my appliance. It wasn’t stool, though I’m not sure what it was (alginate? liquefied paste? pus?). I took off the appliance to find that the hole was now quite a bit bigger than yesterday. Not good. This time we packed it with powder and paste, leaving out the alginate, and I’m hoping for the best. I’m going to contact my nurse tomorrow to get her thoughts. Never a dull amount around here.
For those interested (or suffering from similar issues), I’ve posted several GRAPHIC photos after the break… Continue reading
On March 30, I had a clinic visit with my surgeon. It was the first time I’ve seen her (or any doctor) this year, which is pretty amazing. The purpose of the visit was to go over the results of the various tests/exams I’ve had since my last surgery and to discuss the possibility of trying the take-down surgery again. In short, all of my tests/exams look completely normal. Tt the same time, however, they haven’t shed any light on what caused all of the problems last time, so there remains some uncertainty about trying again, which my surgeon acknowledged makes her a little nervous. I’ve always appreciated her honesty.
Things went very bad last time, and we’ve never been able to figure out why. It’s frustrating. And it’s scary. For both of us. I’ve been waffling on whether to try the take down surgery again for some time now. In part, because life with an ileostomy is mostly manageable; in part, because I’m scared to death of having the same complications as last time and the thought of having another infection/emergency surgery is simply too much to bear. Having an ileostomy is far from ideal, but it’s predictable and livable. The devil I know… If all goes well with the takedown, I’ll be as close to normal as someone without a colon can get. But if all doesn’t go well…
The good news is I don’t have to decide right now. I can wait as long as I need, and my J-Pouch will be there be waiting. In the meantime, I’m going in on Tuesday for an exam under anesthesia so my surgeon can take another look for anything of concern. Assuming all checks out, I’ll have the green light for surgery if/when I want it.
Traveling with ulcerative colitis was miserable. Traveling with an ileostomy is manageable, though the security checkpoint is always stressful. Will the x-ray machine think I have a liquid bomb strapped to my stomach? Will the TSA agent make me show him my ostomy appliance? Will other passengers see it?
This weekend, I traveled for the second time as an ostomate, and I was naturally nervous. All was going well as I approached the security checkpoint until, as I laid my bag on the x-ray belt, they closed the metal detector line and began directing everyone to one of the 3-D x-ray machines. Rather than get scanned and risk a TSA tackle when they see a plastic bag partially filled with liquid strapped to my stomach, I opted for the full pat-down.
I immediately told the agent I had an ostomy and, to my pleasant surprise, he seemed to know what that meant. The pat-down was certainly thorough, but not the horror stories you hear about. Rather than examining the appliance itself or making me show it to him, he simply had me touch it with my hands and then rubbed some stuff on my hands and tested it (presumably for bomb material or something). This was another pleasant surprise and made the whole experience relatively easy and as not embarrassing as a full-body pat-down can be.
I’m sure not all TSA folks I encounter will be as well-trained and professional as this guy, but it’s certainly nice to know that some of them are.
Today, I’m thinking surgery. A week ago, I wasn’t. As I’ve noted before, life has been pretty good of late. I’m feeling well. I eat what I want. I’m off of all meds. And life with the bag is manageable. Most of the time. But when life with the bag is not manageable, taking another crack at the takedown surgery looks better and better. That’s where I’m at today.
After months of having no issues with my ileostomy, I’ve had two within week. Last week, I was out at lunch with some friends, having a good time, when I felt a few drops of warm liquid on my inner thigh. I felt down and, sure enough, there was some wetness around my ileostomy. Assuming it was just a leaky wafer, I figured I’d just head to the bathroom, clean up a bit, and head to my car to get my supplies to change it. No big deal. Continue reading
For obvious reasons, this cause is very personal and important to me. If you’re able to help me meet my fundraising goal, I’d greatly appreciate it. You can make a donation here. As an extra incentive, I’ll match the first $500 donated.
You can also show your support by joining me on the walk. I’ll be the guy not looking for the nearest bathroom.
Thanks for your support—now and over the course of the past year…
Apologies for the lack of updates, but I don’t have much to report. I’m living life. A couple of cross-country flights, a week-long business trip, concerts, parties, volunteering with “We the People” high school classes, and lots and lots of work—other than one low-grade fever for an afternoon, all with no issues. I’m feeling truly healthy for the first time in years, and I’m grateful for that. It’s not perfect. I’m still sporting an ileostomy bag on my hip. But I have control of my life. When I go shopping, I don’t immediately scout the bathroom location in each store. I don’t worry about driving at night for fear that I won’t be able to find an open restroom. My mind is not constantly consumed with worry. I’m just living—for the first time in years.
One of these days, I suppose I will need to make a decision about whether I will try the takedown surgery again. But today is not that day.
Today, I’m OK with the bag.
Today, I’m well.