Not sure which topic, but I read a post where the person's bag fell completely off onto their dining

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 2/18/2009 2:57 PM (GMT -6)   
room floor.  That scares the bejeseus out of me.  Is this something I should be afraid of?  Is this a common occurance, I was worried about leaks and then I read this and had a mild breakdown.
 
My surgery is scheduled for the 18 of March and I am just petrified if I am doing the right thing and not making my wife's and my life worse with this.
 
As I said before I am a scardeycat, about the surgery itself, the bladder incontinence from the rectum removal and the leaks-odor-embarassment and not wanting to leave my room.
 
Sorry for the hissy fit and all..but I do need some real data...
thanks
bob 

Chasblah
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Date Joined Feb 2007
Total Posts : 788
   Posted 2/18/2009 9:28 PM (GMT -6)   
That was me!!
It was kind of funny. At least NOW it is. Because it was just PLOP! I just stared at it for a minute. I was horrified at the time, but now I'm giggling just thinking back on the day.......My husband laughed too.
It was MY fault. The bag got too full. I let it get too full b/c I was in a hurry/was lazy. It pulled loose.
It hasn't happened since. Learn from my mistakes. And it hasn't happened to most people I was embarrassed to find out.
That doesn't happen with the one piece. If you feel more comfortable with them, then you can at least START with them. Then when you feel more comfortable with your ostomy, you can experiment.
Did you read my other post to you about leaks? I'm not sure, so I'll cut and paste it here just in case.......

What may scare you about leaks is a misunderstanding about them. When I first started preparing myself for surgery, I read the stories and was very worried too. I thought when someone said "leak" that meant poo running down your legs. Like a hole in a poo bucket spraying all over the place. I imagined a little brown circle on the leg of my pants slowly getting bigger b/c of a leak!

But it's not like that at all. When we talk of leaks, we usually mean poo getting under the wafer (the part that sticks to your belly). When the poo gets under the wafer and on your skin, it's irritating and you're supposed to change it so it doesn't cause skin problems. It's just a little poo on your skin. It's not even very messy. And you can usually only FEEL it, not see it or smell it or hear it or taste it.......sorry I got carried away.

Still true to this day :)

There is not an odor you have to worry about with an ileostomy! Only when you empty it. It's POOP! Everyone's poop stinks! No matter what they'll tell you. The bags do a great job of holding the odor IN. And if you think you still can smell something. Put some odor eater products in your bag and it takes it away!
I'm 28 yrs old. I'm not embarrassed of my ostomy. I'm kind of proud. It's what made me feel better!. I guarantee I wear clothes tighter than you do and no one can tell I have one! I didn't want to leave my house at first. But I was in pain and healing. Then I got stir crazy. You will too. If you think you are feeling depressed, have your Dr. get you some antidepressants. I, personally, was so happy to get OFF meds. that I didn't want anything. But everyone has moments of self pity. It's hard to look at the world and not be mad at healthy people sometimes. and to think "Why me?" That's normal. You just can't Dwell.
Whether or not this is the right thing to do for yourself, is totally your decision. We can give advice and tell you how it's changed our lives, but we can't tell you that it's the best for YOU. Only YOU can weigh your options and how you might feel about them.
It wasn't a "no brainer" decision for me. It was tough. I've been through a lot b/c of surgery. BUT I'd be going through a lot without it. Maybe not right now, or all at once, but I'm sure I would've gotten colon cancer-and I did NOT want to deal with that.
You have to look at your quality of life. Are you ok living like you have been and willing to take what comes your way with u/c or crohns.
What does your wife say? My husband practically begged me to get this done. And I'm glad he did. I'm glad I did.

I hope I've helped.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 2/18/2009 10:05 PM (GMT -6)   
You don't need to be worried. Almost every "omg leakage" story I've read on here has been due to operator error. Not preparing your skin before applying flange or whathaveyou. I'm still pretty new to this, two yrs and a bit, but I still haven't had any issues. Been on roller coasters, ride my quad/sled, hike, hit the gym daily, shower daily, party and get drunk often, and no probs. Don't be concerned...my only advice is if when you change the bag--if you don't think the flange was installed right-pull it off and start over.

Matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 2/18/2009 10:13 PM (GMT -6)   
OMG chassity that is a hilarious story!

stuff like that doesnt usually happen to people though. I had something similar happen to me, because i hooked the wrong bag onto my wafer! that was stupid, lol.
If you are careful and keep your bag emptied thigns like that dont happen.
Almost all my leaks have been operator error, and stupid stuff at that.
Once i forgot to close the end up! got up off the toilet, i didnt have any pants on was fixing to change clothes, start walkign out of the bathroom and see poop drops following me! see all my fault, lol.

But like she said, leaks are usually just little bits of poo that you see quickly and can get off before anyone else would even know.
And hey the risk of the occasional leak is SOOO worth it to be healthy!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/19/2009 6:08 AM (GMT -6)   
Schrek! DON'T worry about those things...they really don't happen as often as you are thinking! Matt's activities should put your mind at ease...I am also pretty active: jump horses, ski, swim, workout and many more things I cannot think of without problems. You just don't hear about that stuff as much:)

Ditto to his suggestion...if it doesn't seem right, start over!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/19/2009 6:23 AM (GMT -6)   

Chasblah, that is a funny story! tongue Thank God you were home when it happened.

Chewbacca, I've had an ileostomy for 3 years and have never had a bag fall off. I wear a two piece appliance, and my ostomy nurse told me from Day 1 to always listen for the 'click' sound to know the pouch is securely placed onto the wafer. Then you lock it on, so it can't fall off.


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 2/19/2009 5:10 PM (GMT -6)   

Again, I am so sorry for over reacting here.  I am getting some conflicting information from 2 of my doctors - so much so I must go back for a nother colonoscopy.  One says to remove my rectum (my GI), and my surgeon is of another opinion.  So they have me going to a third GI specialist at Washington Hospital Center.  Also my GI wants me to have an open procedure, and my surgeon is referring me to another surgeon (The GI specialist I spoke of to discuss laproscopic vs. open).  Even though my surgeon has booked the surgical date and set me up with the hospital and the ostomy nurse for marking.

I do trust my GI, and he knows that it takes a lot of medicine for me to not feel pain - so I trust his opinion with his referral to the surgeon - but all this confusion - actually has me very confused...and emotional (sorry).

I also apologize to the group because I was a moderator in the UC forum for a couple of years...You would think I would be more logical and even tempered with the posts here and yes, what we now fear will in time be humorous.

Again, thank you for putting up with me.  I am trying to vent here and not let my wife see such a mess.

Perhaps I should change my tag name to a Vulcan-wannabe.  I always have enjoyed all the star trek series.  Stupid, I was just watching one I had seen a hundred times in reruns - and I found myself crying at a sad scene.

I see my GI tomorrow - he is also my general doc.  He has given me xanax - and perhaps this vulcan-wannabe needs a bit more of it.  I can take 20mg of valium and it doesn't even affect me-it doesn't work for me, but the xanax helps a bit.

I think I will be more regimented about it - as my doc suggested.

In the meantime, I will thank you all and God for this wonderful group of people and Peter the founder for letting people like me melt into a little puddle of emotion and then get back up with all the great support given here.

love to all

bob 

 

 

 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 2/19/2009 6:26 PM (GMT -6)   

Bob (shrek, vulcan-wannabe tongue ),
Vent away! This is a very scary and hard decision to make even if you know it is the right thing to do. I know how hard it was from a mom's standpoint. I can only imagine how it must feel firsthand.

You're right. This forum (and Peter) has been a godsend. Knowledge is power. Unconditional support is a blessing. You have always been there for others as support. Let others support you for now. In time, you will be the one with all the experience and knowledge to pass on.

Hugs to you!!


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/20/2009 1:27 PM (GMT -6)   
Ditto to Bennie's post...hang in there, we're here to help!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/20/2009 8:29 PM (GMT -6)   
Well, it'll be 20 years for me on April 5th, and I've never had a pouch fall off....and I'm very active. For what it's worth, though.......before my surgery...,there were a few times out in public when I couldn't quite make it to the bathroom in time! I guess you're just going to have to choose your battles!!! 

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/20/2009 9:57 PM (GMT -6)   
yeah!
I had way more "accidents" when I had u/c. Those were worse.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 2/21/2009 8:16 PM (GMT -6)   
Chasblah said...
yeah!
I had way more "accidents" when I had u/c. Those were worse.

Yup me too :-S   So glad for this baggie!!
 
Matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

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