anyone 15,16,17,or 18 (more questions)

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Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 9/6/2011 8:07 PM (GMT -6)   
i dont mind getting feedback from older people about their ostimie experince but was wondering if ther was any one out there my age im 17. Im pretty okae bout the sugery just wondering about the smell and how it feels to sleep etc. if ur not one of thse age you can still put your input after all this is what the websit is for !!!!! 

David Martin
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 9/6/2011 8:39 PM (GMT -6)   
i had it about the same time. sleeping will take a little bit of adjustment, you cant just sleep on you stomach, well you can but only in a certain way that i know of, i used a pillow on my upper right side to give room for the ostomy "raises my side a little so im not flat on it". it doesnt feel much different sleeping over all, you'll have to empty it at some point during the night until you learn when you have to empty it through out the day/night etc.. also depends on what'ca eat.

the smell really can bother you at first or if you eat something that'll just cause output to smell haha, but theres alot of ways to make the smell better if it is bad, i used m9 most of the time. i know other members have TONS of ways to deal with it.

not sure if it was to helpful but its input so yeah [^-^]
if theres any other questions just post, ill be around to answer if i can. or email me @ isntmypersonalemail@gmail.com
Adam, 16. Birthday Sept. 30.

Diagnosed with Ulcerative Colitis between 05-06. I have UC but its under control. I had surgery may 25 to remove my colon. 2nd surgery Aug. 31 surgery to reconnect to J-pouch. 3rd is dued to be dec. 7

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/7/2011 4:39 AM (GMT -6)   
Like Adam said, you can kind of sleep on your stomach if you raise yourself up a little. I usually just put my knee up. Sleeping is not difficult with an ostomy. It's pretty much normal. Most people have to get up once in the night to empty. I wake up a million times to go pee anyway, so no biggie for me.

The smell is really awful at first, especially when you're in the hospital. But after like 2 weeks it really starts to get better, but you can use lots of things like hydrogen peroxide, M-9 drops, or other odor eliminator drops that are sold with ostomy supplies. HOnestly, I rarely even use the drops and it's really not bad. I don't worry about it.

Let us know if you have other questions! A lot of the teens "on this board" are represented by their parents, so hopefully one of them will reply.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 9/7/2011 9:10 AM (GMT -6)   
I am 19 (close enough, right?).

Sleeping with the ostomy is no big deal. It's even better than trying to sleep with severe UC, because you're not getting up to run to the bathroom all the time. I did not have to empty the ostomy at night. The only thing that could be a problem is if you have skin problems/allergic reactions to the ostomy supplies. This happened to me at the beginning. I was allergic to a lot of the supplies, so my skin got very itchy and peely and the adhesives on the pouch couldn't stick to my skin very well. This meant that I was getting a lot of leaks, and I couldn't sleep soundly because I was always worried about getting a leak, and I was paranoid about rolling over and stuff because I thought I might cause a leak. But I got my allergies sorted out after a few weeks, I found products that worked for me, and it was all smooth sailing from there.

The smell is pretty bad, but the bag is airtight so you can't smell anything until you open it up to empty it, or if you have a leak. So you should only smell it when you're going to the bathroom; your friends won't smell anything. Plus, there are drops you can buy to put in the bag to reduce the smell when you're going to the bathroom too; they work very well.

The ostomy, in my experience, is so, so, SO much better than having UC. The only thing that really got to me was the body image; feeling insecure about it. This is probably more of a problem for young people like us. The thing to remember, though, is that it's temporary (if you're getting the j-pouch, that is). Plus, in time, my joy at being able to do the things I want to do and haven't been able to do due to UC far surpassed the insecurity I had about having the ostomy. It's a really good tradeoff, in my opinion.

Good luck!
Diagnosed with UC in 2007 at age 14. Three horrible flares, 11 blood transfusions. Tried, among others, prednisone (never worked), 6-MP (worked for a while), and Remicade (worked for a while) before running out of options and getting fed up. 3 step j-pouch; 1st 1/19/11, 2nd 4/20/11, minor complications, 3rd 8/24/11. Already LOVING my j-pouch!

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 9/7/2011 10:57 PM (GMT -6)   
THANKS EVERYONE low-key im nervous again ... emotions of excitment and fear keep poping up !!!!!
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