So... what would you do? (whining inside)

I had my first really bad experience changing my wafer yesterday and now I'm a little scared about next time

I've been doing my changes since January and thought I had my routine down pat, but yesterday has really shaken my confidence.

Typically I eat five marshmallows 10-15 minutes before changes and that slows output enough for me to easily do a change. In the past with my end I sometimes had a little output seeping out while I worked, but it was always pretty solid so I could just catch it with a paper towel and move on. I also keep a plastic bag tucked into my shorts so output can drip out directly into the bag, no mess.

Well, yesterday after I removed my old wafer and started cleaning around the stoma, my loop started spitting out PURE yellow liquid non stop (in that pulsating stoma-y way... SPURT... pulse.... SPURT.... pulse). Even though my stoma sticks out pretty far, it was still dribbling onto my skin and some of it even seeped under my shorts and onto my incision which really upset me. I ended up leaning way over so my stoma was totally upside down and "aiming" the liquid output into a garbage bag. This went on for a long time, maybe 10 minutes, and it was still dripping all over my skin. Every time I thought it was about to stop for long enough to clean my skin and slap on a wafer, it started up again.

By this point I was really overwhelmed and on the verge of tears. I wasn't sure what to do or what would work so I took an Imodium and ate another few marshmallows. I don't know what did the trick but it did stop after a few more minutes and I was able to hastily finish the change (in about 30 seconds flat... that made me glad for my experience!). After that I spent a while making sure I cleaned all the output off of my pubis/healing incision... yuck.

Anyway. I feel traumatized! I'm scared of doing my next change! I'm tempted to make an appointment with the WOCN for my next change just so I won't have to deal with it by myself but I know I have to do it alone eventually. Has this happened to you? Is there anything else I could have done??

The problem isn't the mess... All the output was either on me or in a garbage bag. The problem is that you can't have liquid output running over your skin non stop. It's acidic. Also you can't just stand there doing nothing waiting for an ileo to stop outputting, it could be an hour... Also I wouldn't want to be totally naked because then there would be nothing stopping it from dribbling onto my incision or even genitals :-O

Anyway I think I am probably going to take an Imodium before my next change, so the purpose of the post was more for commiserating than anything else.

Sorry to hear that happened! I think most of us have had an experience like that:-(

My trick when that happens is to cover my stoma with a paper towel and gently massage my stomach. You may go through a lot of paper towels but you should be able to 'clear out' your small intestine enough to get a wafer on with a lot of activity. Just make sure to clean your skin before you put the new one on...and don't stress too much since the output won't be on your skin long enough to cause breakdown.

Don't get too discouraged...there is no fool proof way but you'll figure your body out just in time for your takedown:-0

Liz- so sorry you had to experience this. Just curious, when did you do your change? Was it first thing in the morning before eating any breakfast, or was it in middle of the day? I know exactly how you feel... Same thing happened to me the other day when all I was trying to do was change the bag, not even the wafer. It was mid morning an hour or so after breakfast but the stoma had been completely quiet for about an hour and low and behold a micro-second after I removed the old bag, my stoma began to fire off liquid like a water pistol, nuts. I was dumb and hadnt had Tp ready to cover stoma with.

Actual wafer changes have been well behaved thus far, by doing them before breakfast. Had a bit if output once but toilet paper on the stoma was enough to keep it from going anywhere.

I usually do my changes either right before lunch or right before dinner... I tend to have liquid output in the morning before breakfast and that's the hardest to manage (as evidenced by yesterday...) whereas (at least with my end ileo) if I did have a bit of stray output before lunch or dinner it would always be somewhat formed and easy to catch with TP. I think it had actually been TOO long since breakfast when I tried to change yesterday. I could hear my guts rumbling and it was probably just gas and digestive juices that wanted to come out, hence pure liquid. That's a bummer that it happened to you while changing the pouch only, then you feel like a fool for even trying! (at least, that's how it makes me feel)

Good tips from the Moms I've never showered totally "naked" but that's probably what I should have done yesterday. I guess knowing that I can do that if I have to makes the prospect of a repeat less scary!

edit: just saw your post, ddd. hey girl. You're right, I definitely catastrophized this whole thing. And yes I was TOTALLY cursing at my stoma!! I've been doing a lot of starch with meals, sometimes rice, sometimes just bread or potatoes. Haven't tried the fiber yet. I do applesauce once a day and that seems to help bulk a little too. I saw my GI yesterday and she encouraged me to go whole hog with 8 Imodium per day (I was at 4, I'm adding one per day so today is 6) and even wrote me rxs for lomotil and tincture of opium if I need it. I'm hoping doubling the Imodium will do the trick. I also have been lax about eating more frequently, my appetite isn't back yet and it's hard to eat more than three meals per day, but I know I should really be eating smaller amounts more frequently. My dr said she was pleasantly surprised to see I wasn't dehydrated so at least I'm managing OK on that front.

Post Edited (Pluot) : 5/29/2013 11:40:34 AM (GMT-6)

And that's when we just have to yell, laugh and continue moving forward!!!

I am convinced all of this is a test.....and I plan to ace it!!! :o)

I'm sorry to hear about your messy and traumatic wafer change...it can be tough to deal with for sure! Honestly, most of my changes are a little on the messy and hectic side. The only time of day that my output seems to stop is the first few hours after I wake up. I don't like to do changes then because I am very busy at that time of day...running errands, exercising and doing general life stuff before work (I work second shift). This means I usually end up doing my changes before bed, when my output is quite unpredictable....and the marshmallow trick has never worked for me AT ALL! The mess can be frustrating at times...but I decided early on that it is just part of it, and nothing I can't deal with.

I always get a bath or shower before I do my change, and take my old pouch/wafer off while still in the shower. This way I can get a full "naked" shower, which is GREAT!! I am also able to clean the area around my stoma really well and if he decides to get active, at least I am already in the shower and can wait until he calms down to clean off and finish the shower. Once out of the shower, I wrap some paper towel or TP around my stoma right away, to catch any leaks, and go about with doing some other stuff for a bit because I like to feel the air on my skin for a bit. When it comes time to change I just work quickly! I stay naked and lean right up against my bathroom counter with a towel or washcloth laid out for any mess to land on. It may not be the best system in the world, but it works well enough for me most of the time. And I figure, I have the rest of my life to perfect it....HA!! Good luck next time :)

Have you ever tried skipping breakfast and changing before lunch? This was my routine on the weekends when I didn't have to be at work. By lunch time, liquid output should be minimal and makes for an easy change. Obvisiously, biggest downfall was skipping breakfast but I would just kind of combine meals. It definitely made changing a lot easier since I seemed to have output nonstop after eating.

Amythyst said...
"This poo shall pass!" :D

LOL thank you for this.

I just started running a fever, I've been feeling extra worn out, I think I might be coming down with a little bug... Great... *sigh* It's always something.

Oh no! Feel better! Hope the fever isn't long lasting.

OK, all you showerers have convinced me that I need to get off my ass and snake the drain in my tub... it backs up while I shower which is why I've never done a 'naked' shower (don't want to be standing in poop water...)

Fever is holding steady at 100 F and I'm drinking 1:1 gatorade-water with salt... Still peeing like a champ and output isn't too thin. If I'm still feverish in the morning I will drop by my PCP for an exam/labs/IV hydration.

Because of really bad work/surgery/travel scheduling I haven't seen my BF in a month, we're supposed to finally reunite this weekend... realllllly hope I'm not sick then

Saw my doctor this morning... My fever is gone, but still have a headache (though it's not as bad). He didn't think I was dehydrated at all and didn't offer me an IV. If anything my blood pressure is a little higher than usual (normally it's VERY low). My output has also slowed down a lot today, though possibly just because I skipped breakfast before my appt.

Anyway, he sampled and cultured EVERYTHING: urine, stool, even j-pouch discharge. The nurse who gave me the containers for the samples said "Do you think you can go number 2 now?" and I was just like "Yeah, I think I can." Hahaha.

I am wondering if my headache is from Imodium as I ~doubled my dose in the past week and that's when the headache has been worst. It's a very rare side effect though. My belly is totally normal, no pain, GP says an abscess four weeks out would be unusual but if my fever comes back I'll probably need to go to the hospital for blood cultures and a CT to be safe.

My big fear right now is that this is a cuffitis flare, or maybe even pouchitis. I had a fever with no other symptoms about eight weeks after my first surgery and it was because I started flaring in the rectum. It didn't respond to Canasa so I just put up with low grade fevers on and off and bloody discharge until surgery #2.

Sigh... the saga continues...

Well, at least that is some positive news. :) I do hope you feel better...