Misconceptions

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summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/12/2007 10:37 PM (GMT -6)   
what are some misconcetptions you had about ostomies before you got yours?
 
When i first started thinking about it, before i had seen a bag, i thought they were like those old fashioned water bottles, you knwo the ones that are covered in cloth usually plaid, and have the cap on the end? that was the first thing i thought it was.  Then after i foudn it it was not that, i started picturing myself with a ziploc bag hanging off my side!
 
 
 
 
snaej ni tfel eht no cip


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/12/2007 11:17 PM (GMT -6)   

LOL!!!  I didn't know much of anything about them before I ended up with one during emergency surgery.  Learned everything after the fact.  (and No internet then to research stuff on)

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/13/2007 6:09 AM (GMT -6)   
Summer,
My thinking was a lot like yours. I thought the bag was going to be big and bulky and that I was going to have to remove it completely and rinse it out every time I had to empty it. I was so against having one, that I never even researched it on the internet!

Boy, was I pleasantly surprised when I found out that they are small, flat, cloth covered, and have a velcro opening at the bottom for quick and easy emptying! :-)

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 11/17/2007 9:41 PM (GMT -6)   
peggy113 said...

LOL!!!  I didn't know much of anything about them before I ended up with one during emergency surgery.  Learned everything after the fact.  (and No internet then to research stuff on)

 

The same with me. My ostomy was an emergency surgery as well, back in 1989. Plus, we didn't have this great forum back in '89 to help get me through it.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/18/2007 9:57 PM (GMT -6)   
I thought having a stoma would gross me out! But instead I have found that I am facinated by my stoma and I that I am a little OCD over having my intestines stick out of my tummy. I sit in bed to read my book at night and watch my little body part go to work. Having a stoma is pretty neat!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/18/2007 10:45 PM (GMT -6)   
how do you watch it?
i don't like that part, i rarely ever see it work wheni change the bag, whihc was something else i thought would be diff i thought it would be going off like old faithful and i would have to be rushing around like a mad woman! but today when i changed the bag, it was lettign some stuff out, and i almost threw up!
i also thought it would take forever to change it and empty it, but i timed myself chaning it and it took less than five minutes, and i timed myself at work the other night, and i took an order, walked it back to the kitchen, went to the bathroom, emptied the bag, fought with that annoying toiled that will nto flush right, and washed up and got back to the front in five minutes, which i thought was pretty good.
i was worried that it was gonna take me forever to empty it and stuff
 
 
snaej ni tfel eht no cip


dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/19/2007 2:43 PM (GMT -6)   
My ileostomy will be on the 27th of November. I am sure I have plenty of misconceptions. I, too, envision the water bottle style bag. Glad to know that is not the case. I also picture a lot of hassle in changing and cleaning. I expect bad smells and awkward noises creating uncomfortable social situations. I expect to be nauseated by the whole experience and cry a lot over becoming a Borg. I am afraid of complications that might necessitate the temporary nature of the ostomy to become permanent. I am afraid of a long painful recovery. I am afraid of the colectomy that follows three months later. I am afraid this will be the darkest chapter of my life and that my sanity may not survive it. The reality of it all is starting to set in. I have nothing to do over the next week except obsess over the details that I am clueless about. Oh boy, I think I had better find the Alprazolam.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/19/2007 10:50 PM (GMT -6)   
just take two gas-x before you leave for somewhere and the gas will stay mostly under control, also like stacie said, be sure to eat when you are hungry, waiting makes the gas worse.
It's ok to be upset at first, when i woke up from surgery i freaked out! but then when i realized it was all over, and i was finally better and not sick anymore i was happy!
i got like you are about two weeks before my surgery, you wouldnt' believe the things i worried about, i worried about not being able to do a cartwheel, and then i worried that i wouldnt' be able to cheat on my husband, to get back at him if he ever cheated on me. I hadn't done a cartwheel in 10 years, i had no idea why i thought i would want to do one, although i did do one, just a few weeks ago, a bad one, but still
and i wouldnt' cheat on my husband, and he wouldnt' cheat on me, so that was just stupid. It's amazing the things you can come up to worry about!
You will probably have some moments when you are depressed, it wouldn't be normal if you didn't But what you will find is that the stupidest little things will make you so happy! i am not sure why you are getting the bag, but i wuold guess that eating is either painful or limited, and it won't be! and you are probably dependent on meds, no more of that! and no more worrying where a bathroom is, it only takes a few minutes to empty the bag, did you see up there where i talked about chanign it? no one will see it, if you are worried about that, i put some pics on the photobucket page, you can go there
the user name is crohnsdisease
the password is 6mp3asa
and look for my post called can you tell, noone has been able to figure out which pic it is yet.
 
 
snaej ni tfel eht no cip


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 11/20/2007 3:08 AM (GMT -6)   
At 10 years old, I'd never even heard of an ostomy before being told I had to have surgery. On my first visit to the ostomy nurse she gave me sample bags to try on before surgery, showed me what a stoma looked like, explained it all to me, etc so I didn't really have any misconceptions as such, that I remember. I knew that I'd still be able to go swimming afterwards and that's all I cared about :)
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/20/2007 11:04 AM (GMT -6)   
It is comforting to know that I am just being paranoid and silly. I meet with the ostomy nurse tomorrow so I can get all the jitters out of the way. I am trying to come up with a good list of questions to ask. Your posts are so very helpful in this regard. Is there anything any of you wished you had asked before getting your surgery? I'm all ears... umm... eyes. :)

I'm am feeling quite a bit better about it today. But then again, the day is young. I expect to swing back to full-bleed anxiety before the day is over.

Shaz, oh to be ten years old again. It would have been easy to deal with as a child. As an adult, my imagination is far more vivid and I can create scarier monsters for myself. This is one of those times when a writer's imagination works against me.

Thanks, all. You're the best.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/20/2007 11:19 AM (GMT -6)   
i can't think of anything to ask that i didn't, but i did do something that made me feel better, lol. I took my fav pair of pants, the ones that i absolutely love, and put them on and had her mark so that i could wear them. I know that sounds a little strange, but that made me feel better that i knew i would be able to still wear those pants. But i just realzied i haven't worn them, lol. I gotta go put them on!
 
 
snaej ni tfel eht no cip


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/20/2007 11:24 AM (GMT -6)   
One thing I always say to the docs/nurses is "have I forgotten to ask you something others ask?"  or  "what are some of the other questions you answer in these circumstances?"  Sometimes that works, sometimes it doesn't.  Just depends on the doctor or nurse.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 11/20/2007 1:48 PM (GMT -6)   
Summerstorm...I love your list of worries!! LOL! I'm so glad I'm not the only one obsessing over crap that will never happen!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/20/2007 4:33 PM (GMT -6)   
summerstorm said...
i can't think of anything to ask that i didn't, but i did do something that made me feel better, lol. I took my fav pair of pants, the ones that i absolutely love, and put them on and had her mark so that i could wear them. I know that sounds a little strange, but that made me feel better that i knew i would be able to still wear those pants. But i just realzied i haven't worn them, lol. I gotta go put them on!

So, Summer, how do they fit?  Are they still your favorites?!  Do tell.....
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 11/20/2007 8:46 PM (GMT -6)   
When I found out last April that I would finally have to have the surgery my doctors had warned me about for years, I was devastated! I thought my life as I knew it would be over. Not So. It has been an adjustment but very “do able”. Unfortunately, I didn’t have the best instruction in the hospital. In fact, I had my bags packed and literally was ready to leave before an ostomy nurse appeared. After I got home the home health nurses helped me the most---and my husband. He was so patient with me. Remember always, always take your emergency bag (another appliance, etc.).
Jennie

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/20/2007 9:12 PM (GMT -6)   
Dan,
Good Luck with your upcoming surgery. I think you will be amazed at how easy you adjust to have an ostomy. Also, this forum will become your best friend for the first few weeks. I am 3 months post surgery and like you, I had many questions. However, the more I researched about ostomies, the worse I felt. There are so many misconceptions and it is hard to know what is true. Feel free to post questions here. For now, please relax and try not to overly stress about your upcoming surgery. The recovery is not bad. I was walking 45 min the day after surgery. I was walking a mile a week after surgery and four weeks post surgery, I was jogging again (just a slow steady jog). I can almost promise you that you will not regret getting a bag and the reason I feel that I can say that is b/c I have not met anyone who regrets it.

Please keep us posted.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/20/2007 10:45 PM (GMT -6)   
they do fit peggy, but if i don't stay out of the cookies i will have to buy all new everything, lol.
I tried them on and they still look good,lol.
i am with amey on the regret thing, i looked through this board and countless others and didnt' find anyone who said it was the worst thing they ever did and that they wished they had never done it. More often i heard that they wished they had doen it sooner!
 
 
snaej ni tfel eht no cip

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