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nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/27/2008 10:22 AM (GMT -6)   

I am not young, but not that old either. Some of the really young posters are concerned about relationships after surgery. If your life depends on it or your quality of life depends on it, the surgery is worth it. The other comes with time and a good partner.

 

 My husband has been very understanding about my fears and feelings. My tube top came in the mail last week!! I feel sooo much better when I wear it during intimate times. It is almost like the stoma is gone. So the point is, get on with life and get a tube top, too.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/27/2008 6:35 PM (GMT -6)   
that is the best advice ever!

i am gonna use that for everything

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 5/27/2008 6:42 PM (GMT -6)   
what kind of tube top comes in the mail?just curious. im dealing with a new guy and havent gotten the courage yet...i just say i have a thing about my stomach please dont touch it lol i know its kinda lame, but if it ever comes to the point where the inevitable question arises...im not sure how i'll deal.

The even odder thing is...that besides this bag...this is the first time that i really love my body...and i cant even show it...crazy right?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/27/2008 7:40 PM (GMT -6)   
she probably ordered one from Jcpenneys or something

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/27/2008 8:49 PM (GMT -6)   
I just googled tube tops and found tubetops.net. I ordered 2 from the clearance section so I didn't pay very much for them. I think my husband likes the pink one the best-hehe.
Jennie

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/1/2008 9:37 AM (GMT -6)   
Jennie,
LOL - thanks for the tip! I've learned that wearing a mini bag during intimate times is the best! I wish I could wear one all the time, but I think it would explode!! tongue
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 :)


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 6/1/2008 11:35 AM (GMT -6)   

Cecelia,

Where do you buy mini pouches? I use ConvaTec products and am not sure they sell mini pouches.

Jennie


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/1/2008 12:35 PM (GMT -6)   
Jennie,
I use Coloplast and order through Sterling Medical. One day, I asked the Sales Rep if they had smaller bags that fit my wafer, and she found them for me. It was that easy. I hope you can get some through ConvaTec, because they are really nice and small.
:-) Cecilia

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/3/2008 8:15 PM (GMT -6)   
i use convatec too, and theyr mini pouches are not drainable! which sux bc i'm so afraid of changing my system i've never had a problem with these, and have gotten spoiled by the moldable flange...
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/4/2008 7:01 PM (GMT -6)   
a non-drainable mini? what's up with that?!

it must've been designed by someone who still has an anus! tongue

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 6/9/2008 12:56 AM (GMT -6)   
Hollister has a mini drainable pouch.

During intimate times I use a stoma cap. I wear Sensura from Coloplast. I have both the one piece and two piece light convexity. I love to wear the one piece, so my husband and I really need to plan our intimate dates so I can wear a two piece that is interchangeable with the pouches. It's really not that inconvenient. I take a shower, put on the flange, then the stoma cap. When we are through, I change it to the regular pouch.

If some of you women are interested, there is a pouch cover at http://www.myheartties.com

These look nice, but I have never tried one. If anyone has, let me know.

Nene205, are you wearing the tube top just around your waist/stoma or to cover your entire front - chest and stomach?

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 6/9/2008 12:01 PM (GMT -6)   
Hey all,
My husband ordered me 2 covers from myheartties. They are real cute but I never could get the hang of putting one over my flange so that it looked like the picture. With the tube top, I just cover my waist/stoma. That way my husband doesn't have to look at the bag, even though he tells me it doesn't matter to him. But it does matter to me!!
Jennie

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/9/2008 1:04 PM (GMT -6)   

I just ordered myself 2 tube tops from tubetops.net!  I can't wait to get them!  Mini bags (at least the ones I have) are still too big for me to feel comfortable exposing them during those times (they are 9" long, I think), and I am afraid that the stoma caps they sent me would explode off possibly!

I ordered one skin-colored one and one pink one...I hope they fit (that's the one reason I prefer to shop not online) :-)

 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/9/2008 8:39 PM (GMT -6)   
i have some of those covers for the bags, but i just cant' get them on the bags right. I don't understand them.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/10/2008 9:37 PM (GMT -6)   
I like to wear short nighties with spaghetti straps. They're just the right size to make me feel comfortable and covered up.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/12/2008 3:12 PM (GMT -6)   
wow...those hear thingies are cute....45 bucks? lol thats alot for me considering i'm single and don't really do the "do" lol it'll just sit n my drawer n e way. I got in my first argument with my friend about him not touching my stomach, he doesnt understand and i cant bring my self to tell him :O( this will be over soon, but such is life....
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 6/12/2008 4:47 PM (GMT -6)   
Hey Praying..,
Don't put yourself down!!! There are worse things in a person than having an ostomy. Being honest and kind and loving are a few things that come to mind that are hundreds of times more important than having an ostomy. It wasn't your fault that you have had crohns disease. Tell him. If he can't deal with it, he probably couldn't deal with a whole lot of things. Life is great-live it.
"If everyone sang the same note, there would be no harmony!"
Jennie

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/13/2008 7:30 PM (GMT -6)   
Praying,
Guys aren't bothered by the same things that bother us. Remember, they're from Mars! (And, in this situation, that's a good thing!) :-)

If you like him and want to keep dating him, you should tell him your story about how sick you were, and how surgery made you well. He obviously cares about you, and he'll be glad to know that you're not sick anymore. I've told lots of people my story, and everyone has been really supportive.

Good luck, and let us know how it goes.

Cecilia

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/14/2008 8:40 AM (GMT -6)   
start just by telling him that you were sick and that you have had surgery. If that goes well, you can begin to tell him more and more. Honestly, i wouldnt' be upset to find out somoen had an ostomy, but it might be kind of hard for someone to just tell all of that, flat out. More than the ostomy, when people have really really bad diseases, some people have trouble dealing with the fact that they did, thinking it might have made them different emotionally somehow. I think because it puts us through so much and it does put a huge emotional strain and physical on you. he also may be worried, that even though you are better now, that it might not last.
Also i know you are worried about what he will think of the bag, and seeing how he reacts to a vague description of hte surgery can give you an idea of how he will act to the major reveal

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/15/2008 7:53 PM (GMT -6)   
thanx guys. i was talking to my brother about it the other day, and he pretty much said the same things that you said. that i should start with being sick and work my way up lol. im just so used to being independent and nonchalant about what people think of me, that this is new. i do like him, mayb i'll come up with the courage sooner or later lol
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you

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