A nightmare time with the stoma

Literally the worst hour of my life since the operation.

I've had about all of three hours sleep so bear with me. It began last night when I had a lot of trouble changing the bag. I had a shower, I washed carefully around the stoma, rinsed it off carefully, dried it off carefully, yet there was still an annoying sticky residue below the stoma that would not come off fully. That stickiness seems to have been there for weeks now. Jump forward to about 7am or whatever. I had not slept well, and woke up yet again. Felt around the wafer, was concerned that the bottom of it was a bit sticky and loose. But when I looked at it, it didn't look soiled. Debated internally whether to ignore it or change it. Wearily, I eventually decide to change it.

Big mistake. First, the stoma would not stop outputting. My entire freaking dinner came out bit by bit; I could see every last mushed up pea going. (I thought early mornings were when the stoma was meant to be least active.) Second, my skin underneath the stoma, as well as always feeling faintly sticky, is red and sore/painful to the touch. Third, I swear as well as output coming out from top of the stoma, it was also leaking out from the edges; every 10 seconds or so, a trickle of thin pale brown liquid would trickle out from the bottom of the stoma, further aggravating my red and sore skin.

Is the last one even possible? Is this the mucocutaneous separation I've heard about?

Not exaggerating when I say I was sat on that toilet for probably an hour. Used up an insane amount of toilet/kitchen roll and blocked up the toilet. I tried putting on medicated talc to dry the sticky skin, which worked, until the stoma leaked again 10 seconds later. Every time I stood up the stoma leaked. Jumped into the bath 3 times to rinse off crap.

Eventually I slapped on a seal and a bag. I'll probably have to change that later on and the thought depresses me no end.

I don't know what to do. I can cope with crapping into a bag. What I can't cope with is that crapping into a bag works so badly.

Post Edited (NiceCupOfTea) : 6/1/2013 2:05:26 AM (GMT-6)

If your output is really liquid it will kind of "roll" along the stoma until it hits your skin and *then* you'll see it -- that's probably why it seemed to be coming from the bottom or side instead of actually out of the opening. I've noticed that before too. I also seem to paradoxically have the ability to have liquid and semi-formed output at the same time, so there's output clearly coming out of the stoma and also liquid dripping off the bottom. It's normal, just unbelievably annoying.

I had a really similar experience for the first time earlier this week so I can't offer much besides commiseration. It really sucked. Mine was spitting out liquid for about 15 minutes. I decided to throw all my ammunition at it so to speak, ate five marshmallows and took an Imodium. I don't know if either of those did anything or if it was dumb luck but a few minutes after that it stopped outputting (and didn't start up again for like an hour -- sure, NOW you decide to behave).

Is it hard to get in to see your WOCNs? Like to get an appointment and stuff? I will admit that I was a total coward and made an appointment with my WOCN for the next appliance change... I kind of pretended that I thought I had skin irritation but really I was just afraid of doing the change myself. I think she saw through me but she said it was OK. They are there to help and honestly I'm sure most of them would rather do a change for you and help get the slightly irritated skin under control now rather than wait and have to deal with you when you have serious ulcerations and stuff.

Yeah... it is a little hard to picture. I thought of a chef's hat more like this:

http://www.clubchef.com.au/show.php?prod_id=20144&prod_name=Spanish+Chef+Hat+by+Club+Chef

Basically what I am trying to describe not so successfully is to wrap a 1.5 inch wide paper towel strip around your stoma so it is like a tube that sticks up above the tip of your stoma. The tube will fill up with output. Then you pop it off when it gets full, toss it in the wastebasket and quick wrap on another one. The tube keeps output from dribbling all over the place and allows one to work at the base of the stoma with powder, an Eakin etc.

You can sort of see it in this blog post:

http://ostomyoutdoors.com/2013/04/01/using-duoderm-to-protect-peristomal-skin/

I have a longer stoma though. Not sure it would work so well for a short one.

Hope you can get some rest soon.

Hmmm... never thought of using cardboard instead of the paper towel but might as well give it a go. Sometimes one can come up with some pretty cool solutions to ostomy problems just by experimenting.

I use the Cavillon in the wipe form (actually it is a little sponge but it is packaged like a wipe). You can definitely get better control with the wipe instead of the spray. To keep the powder from getting everywhere, I do my changes sitting in a chair in a bit of a reclined position. That way I am not fighting gravity. I put the tiniest bit of powder just along the stoma as pictured in my blog post and then dab it with the Cavillon wipe.

Hey... don't worry if you aren't walking that far yet. I could only walk about 1/4 mile until 4 months post-op when I got stronger and better at managing my ostomy. I had to work up my hiking distances a little at a time. Just getting outside even for a short while close to home can lift the spirits.

I visited the Alps 18 years ago. They were so beautiful. I would love to get back there someday.