lesson of the day...

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summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 8/5/2010 8:06 PM (GMT -6)   
never congratulate yourself on a change well done, until the change is, well, done.

i went to change my bag yesterday evening, and i pulled the old one off and it came off perfectly, not a tiny bit of anything left to clean off, nothing was coming out of my stoma, it was perfectly clean, i was like, wow this is gonna be so easy. and THEN the bag slips out of my hand and goes falling to the floor!!! I watched it in slow motion, and saying, oh s*(&, in my head im thinking, literally!) and somehow, i have no idea how, even though it flipped a few times in mid air, and its not that far of a fall, it managed to land perfectly where not a single drop fell out!!!
However by that time i was rattled and nervous and dropped one of my towel squares on top of my wafer so i got lint all over and had to lay there, naked, one towel square over my stoma trying to pick lint off with one hand!
So what usually takes me 8 minutes, and would have taken even less since i had nothing to clean off, ending up taking like 15 because i was so nervous!
Teach me to be happy!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 8/5/2010 8:34 PM (GMT -6)   
I have yet to change my bag by myself. It isn't that I don't WANT to change my bag but my husband takes over like the chief of the bag changers. I don't even tell him when I am ready to change the bag...I think he either has mental telepathy or sniffs it out, but he can be watching tv in the family room...waaaay over on the other side of the house and I am in the bathroom and all of a sudden he appears. Then he says..."OH...time to change the bag". He gets everything ready...God forbid I cut out the hole because he has it measured precisely. My job is to peel off the old bag while he holds the waste bag and then after he places the new bag over my stoma I have to hold it in place for a few minutes. It takes us less than five minutes, so guess I really should count my blessings but I really want to be able to do this by myself!
By the way....did your surgeon remove your anus? Seems like my surgeon was the only one who left mine intact and now I have a giant hemorroid (which looks like it is ready to take over the world) hanging out of my anus . Why did he do that??? UGH!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/5/2010 9:14 PM (GMT -6)   
christine, go to the bathroom, lock the door and change the thing on your own!!! If you are at home by yourself and you have a leak, you will be out of luck if you cant do it on your own!
It took me a few months before i would do it myself, i just couldnt figure out how to do it myself, seemed like i needed more hands. Once i did it by myself it took much less time.
And yes my butt was removed! i dont know why your surgeon left yours, i think thats odd
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/6/2010 5:02 AM (GMT -6)   
my heart still beats faster when it's time to change... lol, but i'm doing ok and had no accidents so far. i was very nervous doing it my self at first, but what happened to me was that the day i was discharged from the hosp, the stoma nurse helped change the wafer, but the next day, when i was home, at 8 pm everything was leaking all over me.... gosh was i in panic.... i just stood there in the b/r in front of the mirror for about 15 minutes!!!! in shock, with a towel on the leakage area not knowing how to even start doing anything. finally decided to prepare all the equipment, take a shower first, then i called the stoma nurse (THANK G-D she answered at such a late hour) and asked her to please help me, she guided me, reminded me what equipment i need and all the steps how to do it. i did it all by my self and that wafer was great for 6 days!!! lol i was so proud of my self.

i had an appt scheduled with the stoma nurse to have one more training for few days later, but i called her and cancelled, i told her i don't feel i needed it anymore, cuz i was confident enough to do it by my self now.

i'm glad it all happened the way it did, it helped me to just cope and do what i have to on my own :)

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/6/2010 9:51 AM (GMT -6)   
i always keep at least one box ready, with everything i need for a change! Wafer precut and everything. Those of you are who knew cant precut cause it still might have changed, but its so much easier to just grab that one box, with everything unwrapped, instead of fumbling with stuff while i have a aleak!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/7/2010 11:59 AM (GMT -6)   
Christine and Hodaya,
You'll get used to it. My heart used to beat fast too when it was time to change. Now it's no big deal at all. I just sit on the toilet in case Zoe decides to poop and lean forward a bit if some comes out. It's seriously not a big deal at all.

Yesterday I was performing in a dance show and I was really busy all day so I decided to push it--should have changed everything the day before but "didn't have time" (takes less than 10 min, but seriously..). I learned my lesson there; I got to the theater and went to the bathroom to change into my costume and when I pulled down my jeans I was greeted by a HUGE mess! Had a leak and it was all inside my jeans and on my undies....eeew. Thankfully I was changing clothes anyway, and I just had my friend bring me my purse (with my change of extra pouches and stuff) and changed Zoe's outfit in the public bathroom...it was kind of annoying but it was totally my fault; should have changed it before!! Lesson learned though, and seriously no big deal because IT'S WAY BETTER THAN DIARRHEA RUINING MY DAY! :)
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/7/2010 1:20 PM (GMT -6)   
well just when you think you're on top of it, something happens.... so yesterday after telling you all how well i was doing, it was time to change again, so prepared everything, took a shower and sat down to do it. well i peeled the wafer, cleaned all around the stoma with water and soap, dried the area and started the measuring and cutting. i have to say that since i came home form the hosp, every time i had to change the wafer or just the bag, my stomie was never active while doing it, it was so convenient. but this time, well while cutting the wafer stomie decided to be active, i got really stressed, started cleaning up all over again, finally i finished, and in a hurry i applied the wafer on. as i was pressing the wafer to stick, the stoma was active even more than the first time, it was a lot coming out, so started cleaning it again as best i could, cuz it was already messing up the wafer. finally it was clean again, but then i realized that i was so stressed that i forgot to use the little wiper that helps the wafer to stick better..... oh crap... peeled the wafer again, cut a new one, put the paste on it (mean time stomie is active AGAIN).... gosh, what a mess. i finally had it done, but it took 30 minutes to finish with this whole ordeal!!!!!

i know, i should be prepared to a situation like that happening again in the future, so i should get used to it and not stress over it too much... but i hope it doesn't happen again.

summer, my stomie keeps shrinking, it shrunk in 3 mm compared to the previous changing 6 days ago. i'm one month post op, how do i know when the stoma got her final size? how long should i wait till i know?

the stoma nurse also told me i should keep an extra box prepared with all the equip. i havn't done it yet, but maybe it's time to do it.

Stephanie, thanks to you too! yeah i guess with time it gets easier, esp when i won't have to measure and cut anymore. my gosh what an ordeal you had, good for you for handling it so well, but i don't think i'll ever be able to handle such a thing as well as you did... and how do i do it..? should i always also carry extra undies and cloths with me everywhere i go..????

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/7/2010 3:46 PM (GMT -6)   
it takes about 6 months for it to keep it's permanent size, mine was a little faster than that.
I dont know about a loop ileo though.
and yes you should always carry extra undies and at least pants. I just leave them in my car, and if i go in someone elses car i toss them in there.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/7/2010 4:00 PM (GMT -6)   
thanks summer. i don't like it that i should carry cloths with me to everywhere i go, but oh well, guess i better start getting more organized.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/7/2010 10:12 PM (GMT -6)   
well you dont have to carry them into the store or anything, lol.
Just leave the bag in your car. in summer i put a pair of shorts and t-shirt in there, and in winter i change it to a pair of jeans and long sleeve shirt. I dont mess with it other than that.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/8/2010 12:17 PM (GMT -6)   
summer, your stories crack me up!! tongue I'm still laughing at the bag flying through the air in slow motion part!
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/8/2010 7:53 PM (GMT -6)   
yeah its funny now, lol. But itwas like something that never happens in real life
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 8/11/2010 9:37 AM (GMT -6)   
I've had my ileostomy for 4 years and here's what I've learned. I change everything first thing in the morning - NOT in the evening after I've been eating and drinking all day. Makes for a totally inactive stoma if you do it early in the morning. I have everything ready - I never remove the appliance and THEN start cutting the new opening. I have a small table I set next to the couch I lay on with everthing out, cut, caps off, gauze or paper towels precut and ready, a cup of warm water for cleaning. The entire process now takes me less than 5 minutes. Then I lay there for about 3 minutes with my hands laying gently on top of the area to create a little more warmth to help everything seal.

My husband has never changed this thing in the entire 4 years - I wouldn't let him. Christine, no matter his motives, you're not doing yourself any good letting your husband have that much control over when and how you do this.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/11/2010 3:47 PM (GMT -6)   
it seems that i am like the only person who has a ton of output in the morning, lol.

And yes it is very important to have everything ready!
i love to read the instructions that come with your stuff, check them out one day.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/11/2010 3:49 PM (GMT -6)   
No, summerstorm, you are not the only one...I would NEVER change first thing in the morning...it would be UGLY shocked
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/11/2010 9:34 PM (GMT -6)   
mine doesnt seem to have a set "quiet" time, its just random! Like me!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/12/2010 9:24 PM (GMT -6)   
I was lucky to have a visiting nurse come to my house for 2 months when I first had my stoma. She was not a stoma nurse but had MUCH experience with them. She taught me well and gradually helped me take over the task by myself. It used to take me 2 hours! Now I have it down to about 20 minutes.

BUT the very first time I changed it all by myself I passed out cold just after I'd done it. Thank heaven the visiting nurse was still at my house and could bring me out of it.

We should make a movie of all our antics. If it weren't so serious it would be comical. I think we all go through the same learning curve and all scramble around the same way especially when the stoma goes active when we are changing then we need the re-cleaning routine.

Rosemary
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