Skip to main content

A Poo day

Today was one of those days. It started off great. I felt great. The weather was perfect, at least perfect to me. As I stood waiting for my bus it was 64 degrees and cloudy with a slight mist in the air. Ahhh…..rain and cloudy days – perfect.

I arrived at work and started in as I’ve got tons to do and I’m behind on the next issue – again. And then I felt it. An itch. I scratched. It still itched. I tried to ignore it, but it itched more.

I went to the bathroom and sure enough, poking through the surgical tape that helps to secure my ostomy pouch I could see a leak in progress. It hadn’t yet managed to sneak out of the tape, and onto my clothes.

Great. Just great!

Could I please just get through one week without having a health related issue interfering with my work day? Why didn’t it do this when I was at the wound care clinic last week? Oh no, it had to be on its best behavior then.

Our editorial assistant works a full day on Mondays. She’s a college student and this is the only day of the week I’ve got her all day. I couldn’t just call the taxi and go home until I’d gone through everything with her to be sure she had enough to keep her busy all day. I needed to sort through her folders with all the press releases we’d been saving for various little stories. If I took them home she wouldn’t be able to start working on them.

So, frantically, I started going through them and prioritizing them for her. (She’s new to the industry so I help with some of the news judgment stuff. Having covered the industry for 10 years now, I know most of the back stories to most of the juicy stuff.) This took an hour and all the while I itched and felt panicky.

Finally I got that finished and could call a cab.

As I sat waiting for the cab I felt a warm gush. Ohhh noooo….noooo….noooo

Yep, it was diarrhea. And, it had managed to leak through the tape. I could feel the moisture creeping down my skin. NOOOOO …..not here……

Sometimes when this happens I’ve got hours before it’s a full-blown disaster. Sometimes I’ve got minutes. And, of course, you never know how long it’s going to take a taxi to arrive, thus why I didn’t call one until I could leave. I just couldn’t leave and have us both that much further behind.

Luckily it only took 20 minutes to get a cab, but by the time it arrived the leak was well through my underwear and soaking through my jeans. The entire front and crotch of my jeans was soaked with poo. I went downstairs in the elevator wondering if it smelled (I couldn’t smell it) and trying to hold my big purse and my tote bag full of my file folders in front of me, praying no one would see.

Thank God denim absorbs moisture well. While it ruined my jeans (my favorite pair by the way…the ones nice enough to wear to work and that fit perfectly) it didn’t leak onto the seat of the taxi.

We had to stop at the bank so I could get some money to pay the cab driver. I hadn’t planned on taking a cab home this day, so I didn’t have an extra $20 on me. Once again, I carefully got out of the car holding my big purse in front of me in what must have appeared to be an awkward motion.

Finally I was home.

Relief!

The jeans are totaled. No amount of stain remover is going to fix them.

The rest of the day was actually quite productive. I can log onto my work computer from home. I can check my e-mail. It really didn’t slow me down much. But it isn’t about the actual impact on my job – it’s about perceptions.

This is happening often enough now that I’m worried people are going to think I’m making it up. I’m not. It’s a horrible feeling to know you need to get home and be powerless waiting on a taxi.

The problem lately has been some bleeding sores around my stoma, but that wasn’t the problem today. When I took care of business, sort of speak, they all looked fine. None of them were bleeding. In fact, there was new skin growing over them. I have no idea why it leaked.

What is going on? This used to be a problem I had maybe once or twice a year – now it’s almost weekly. There’s these little size things to measure the size of your stoma to make sure you’ve got the right size pouch. I pulled one of them out of my medicine cabinet to check – has my stoma changed size? Nope – as best I can tell it’s the same.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria