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scootchski
New Member


Date Joined Aug 2011
Total Posts : 3
   Posted 8/28/2011 8:14 AM (GMT -6)   
Hi All,
I am so glad to have found this forum. It sounds like so many people have had many miserable years. Maybe in some respect my daughter is lucky. She is 17 years old and started not feeling well in May but her symptoms were vague. By mid July she lost her appetite and 10 pounds (down to 96 pounds). After an ER visit for severe abdominal pain at the end of July, she was diagnosed with Crohn's. She started on Entocort and Flagyl but on Aug. 12th her ileum perforated (and appendix ruptured) resulting in a temporary ileostomy. It was a lot to deal with in a short period of time. She is starting her junior year in high school on Sept. 7th (if she gets surgeons ok) and is very anxious about it. Her main concern is the noise the ostomy makes. She does not know what to do when it occurs in a quiet class room. She is now using a vented pouch so it is more flat under her clothes, but she is also concerned about odor when emptying it. It breaks my heart to see her going through this. I looked for a support group in my area but there is only an adult Crohn's group. I think it would help her to connect with other teens with the same experience. Any advice?
Scootchski

David Martin
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 8/28/2011 8:45 AM (GMT -6)   
Hmm.. ive had the same concern when i had my ostomy in school, to quite it down there isnt really much that i know of that you can do maybe some of the other members might have an idea. i usually just try and ignored it when it happens, all my friends knew what it was and supported me so it never really was to big of a problem.

when she emptys it im sure she could just go to the nurses and empty it in her bathroom, thats what i always did because i didnt worry as much whos around etc..

Adam/David
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 8/28/2011 9:39 AM (GMT -6)   
I honestly empty mine wherever and whenever. People NEVER notice. Seriously. I've had conversations with them about it. I can even go into a public bathroom with a girlfriend and she's in the stall next to me and they don't notice. Public bathrooms kind of neutralize the smell becuase you never know what could be causing it. Plus, you could have her carry around a small bottle of M-9 drops or hydrogen peroxide and put a few drops in the bag after each empty. It pretty much neutralizes the odor.

And if she's nervous that people will see it under her clothes or whatever, they won't! Most teens have no idea this could exist, and they are so worried about their own looks they don't have time to analyze hers.
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!! :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/28/2011 12:40 PM (GMT -6)   
her ileo is pretty new, less than a month right? if that's the case, the noise will settle down a lot! as long as she doesn't get hungry, or eat the gassy foods.  and usually even though she can hear it, most people can't.  if shes really worried, she can wear like an extra tanktop under her clothes, or maybe keep her coat or purse on her lap. 
as for the smell, you can but these adapt lubricating packs, they are singles, and she can carry them with her, they take care of smell and she wont have to worry about a bottle, she can get it out, use it then toss the package, without having to put the germy bottle back in her bookbag or whatever, lol.  i always put one or two in my pocket when i go out, so i can use them.
as for seeing it, noone will.
and it its new the smell will calm down some too, and she can figure out what foods make the smell the worst and avoid those while at school.  like for me, ranch dressing, blue food coloring, ham, onions, broccoli, fish those make the most horrible smells in the world!  not even m9 can control the fish, lol.  but like they said, in a public bathroom noone knows who is making the smell anyway, and most people wont point it out, cause then it makes them look guitly, and no longer than it takes to empy, most people dont think youve been in there long enough to make that smell, lol.
 
i hope she has a good year!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/28/2011 12:49 PM (GMT -6)   
Welcome, Scootchski. I'm glad you found us, too! :-)

I'm sorry your daughter has been through so much in such a short amount of time. I was sick with Crohn's for 7 years and would not wish that on anyone. Having an ileostomy has given me my life back. I love not being in pain anymore or having to take any medication.

My ostomy was noisy the first couple of weeks after surgery, because there was a lot of air to pass through, but it has quieted down significantly. It gurgles a little first thing in the morning when I eat breakfast or drink coffee on an empty stomach. I just rest my right forearm over it, which muffles the sound.

Like Stephanie said, the smell can be eliminated by using a capful of hydrogen peroxide or a few drops of Hollister M9 deodorizer drops after each time she empties her pouch. They can be purchased through the same company where you buy her ostomy supplies.

The other kids will not know that she has an ostomy, unless she chooses to tell them.

I wish her all the best with her recovery, and please have her check in here, since there are a lot of young people who have ostomies due to Crohn's and Ulcerative Colitis. And please ask any questions you may have. We're all here to help!

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

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/28/2011 2:36 PM (GMT -6)   
Welcome. You and your daughter have been through a lot in a short period of time. It will take some getting used to.

I want to just second what others have said. My ostomy was really noisy at first, and within a month or two it was quiet almost always. I use hydrogen peroxide for the odor; it works better for me than the M9 drops (and is a lot cheaper).

If you have a local chapter of the Crohn's and Colitis foundation, they might be able to find other teens for her to talk to -- in Boston there is a program called "Power of Two" that matches people in various situations. The United Ostomy Association or your surgeon or nurse might also be able to help. There are a lot of younger people on this list too.

You might find it worthwhile to go to the adult support group with her too. I go to a group here, and a lot of the information is very practical, and not so age dependent.

Feel free to ask more questions (or to have her come on and do so). Good luck.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/29/2011 8:44 AM (GMT -6)   
She doesn't have to tell anyone if she doesn't want to feel awkward about it. At her age I can see where she might feel uncomfortable. Certainly nothing to be ashamed about but everyone has their own way how they like to handle this information especially in the beginning. The older we get the more open we are about things and handle things differently from when we were younger it seems.

She can always make a comment...I must be really hungry or my stomach is acting up etc.

And yes things will quiet down as stated. Definitely pay attention to the different foods that seem to created a stronger odor if she wants to try to control that. My husband is a plainer eater and has very little odor. Fish definitely seems to have an impact for him.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free
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