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i HaTE it when......

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Posted 7/4/2012 7:27 AM (GMT 0)
what do you hate about your stoma / living with it?

i hate it when....
i'm in a public restroom and have to drop my pants all the way down onto the nasty floor so i can spread my legs far enough apart to empty my bag without it getting on my thighs. public bathroom floors are gross and i hate when my clothes hit it. yuck!
Posted 7/4/2012 7:29 AM (GMT 0)
i hate it when....
i'm in a meeting with a client or at a business networking event and it's really quiet and my stoma FARTS! loudly and doesn't stop. then sputters and farts some more. OMG
Posted 7/4/2012 11:33 AM (GMT 0)
I hate it that I don't have any excuses to read books or magazines on the loo. Two minutes to empty then I'm out of there!
Posted 7/4/2012 12:39 PM (GMT 0)
Kazy, I can't spread my legs far enough to empty sitting down, due to my butt wound that is still not fully healed (and I'm not sure I'll ever be able to empty that way, due to the complications I've had). I leave my pants up, with the pouch outside them, and face the toilet and get down on one knee, or if the floor is really gross, kind of do a lunge. At home I use a piece of foam.

Shaz, know what you mean.... I used to have a magazine rack in the bathroom, one benefit of IBD, I stayed current on a lot of publications!

Hate feels like a strong word to me today.... but what I really don't like is when I have to change the bag on a day that I have to leave early and can't wait until my stoma has settled down a bit....
Posted 7/4/2012 7:49 PM (GMT 0)
I am post take down and there are lots of things I hate, it takes much longer to poo, I poo more often, the consistency changes all the time is not reliable and I have to wear pads all the time. What I absolutely hate an am procrastinating righ tnow is the electrode in my butt for biofeeback therapy, getting buzzed up there hurts after a long day.
What I appreciate is that I am pooing less frequently and more or less sleeping through the night.
I hate having to take immodium every 4 hours... or else risk accidents.
Posted 7/4/2012 9:58 PM (GMT 0)
great thread.. :-) totally hear you!

only people who have been through this stuff can understand.. can you imagine if someone just came along and read this thread about being buzzed up the butt? not being able to spread your legs wide enough to empty your pouch and farting stomas!? LOL :-) the stuff we have to endure.. thank god for this forum.

I know people mean well but I really hate it when friends/family and associates say unhelpful things.. but they're trying to be really helpful.. such as:

Oh your problems are probably because you don't chew enough.. I noticed you gobble your food sometimes

Are you sure all that running didn't cause your problems?

Have you been tested for coeliac disease? my Auntie Flo had that and she was in a terrible state until she cut out wheat.

*SIGHS*
Posted 7/5/2012 2:58 AM (GMT 0)
Oh my goodness, Ironmum, the celiac comment is the one I absolutely cannot stand the most!! The week before I had my colectomy, people were still trying to convince me that I "just" had a gluten sensitivity. I cannot tell you how angry I was.

Anyway... my least favorite thing to deal with when I had my ostomy was showering. Showering with the bag on was just annoying. Also, I would shower on change days and I always felt like I was racing to get everything done before my "no poop" time window was up. A couple of times I took nice, leisurely showers, but by the time I got out and had to put my new appliance on, my stoma was back to work. Poop all over after a shower is no fun.
Posted 7/5/2012 6:17 AM (GMT 0)
I hated it when I was sick with cu and a friend said "oh, you've had some diarrhea."
Posted 7/5/2012 10:07 AM (GMT 0)
You're reminding me -- number one thing I hated was when someone told me a few days before surgery that her acupuncturist could cure Crohn's, and I should cancel the surgery and see him...... this was a co worker I don't even know that well.
Posted 7/5/2012 2:14 PM (GMT 0)
I hate leaks. I hate changing the bag in the middle of the night due to a leak. I hate being paranoid about doing certain things like bending over because it seems to loosen the bags seal when I do. I hate that I get my bag to stick a good while for about a month and then it goes haywire and I don't know why and won't stick... makes me want to scream.

I could go on and on...
Posted 7/6/2012 11:28 PM (GMT 0)
I hate when I have to change the bag after I eat, it's hard to do it right when poop keeps coming out! I hate when I get blockages, I get them about twice a year, and the thing that makes it hard is that it's not from a certain food, anything can block me, it makes me so mad!
Posted 7/6/2012 11:52 PM (GMT 0)
I hear you all about what you hate.
I hate having to go and empty my bag every 45 minutes after dinner (and sometimes in the middle of dinner). I hate being paranoid and ALWAYS checking my bag, but I hate leaks even more! I hate not being able to wear a bikini without my bag showing. I hate dropping my drawers right down in a public bathroom. Yuck!
I hate the farting noises that usually happen when you are in a quiet area or at an important appointment/meeting.
I hate the noise the bag makes when it rustles when you move.
Thanks for letting my vent. I love this forum.
Posted 7/8/2012 8:14 AM (GMT 0)
i hate it when i'm walking around out in public and look down to see the bottom of my bag hanging out the bottom of my shirt. OMG. horrifying!
i think i need to invest in a bunch of long tank tops to wear under my shirts/sweaters
Posted 7/10/2012 7:41 PM (GMT 0)
At this point I thankfully don't hate anything about my ileostomy, per se, but it used to really annoy me when people used to compare my severe UC to a friend who had the "same thing as me" when they were referring to IBS.
Posted 7/10/2012 8:18 PM (GMT 0)
I hate waking up in the morning with poo on me when my bag leaked.. just yesterday. But in all reality.. I shouldn't complain. I have had very few leaks and I guess it was my time for one!

And boy.. do I get that drop the clothes in the public bathroom things. Gosh.. how I try to juggle it so they don't touch the floor. And now with a perianal wound still healing and having problems I just shiver to think about the cooties touching my open butt wound when I pull my clothes back up!
Posted 7/12/2012 2:04 AM (GMT 0)
I hate watching my husband looking so helpless as he fumbles with this new "appliance" and being able to do nothing to make him feel better- I wish I could lift him from his sadness-
Posted 7/15/2012 2:24 AM (GMT 0)
I don't hate anything about my bag anymore. I've found solutions to the issues I was having.

Lily, I still wear a bikini! My ostomy is at pant level so I wear shorts, fold the top of the bag down and hide it.
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