Hi, I am a fifteen years old girl with Hirschsprung's Disease. I wrote to you two years ago explaining that I had developed urinary gushing out of nowhere for no particular reason. I am now in ninth grade - my first year of high school - and my gushing has gotten nearly impossible to manage. I need to wear between 12-18 bladder control pads at once (24-28 during my period) and change the pads every hour. I've almost had accidents in front of people multiple times, which has forced me to always wear leggings, a pair of shorts, a long dress, and a long cardigan (along with the pads and special underwear.) To prevent anyone from smelling the urine, I sprinkle a teaspoon of baking soda between every pad and baby powder onto the pad which directly touches the skin. (I make sure that the baking soda never touches my skin).
I have a 504 which explains that I need to always be seated near the door and never have my health discussed in front of kids. However, I'm constantly battling teachers who forget to grant me these two "accommodations". (However, in my opinion, protecting one's privacy is not an accommodation, and being seating near the door because I gush urine is not one either). I finally thought I had solved things with all my teachers, but a few days ago my history teacher forgot to seat me near the door - again.
I'm not comfortable telling my teachers about my health specifics, but I'm absolutely TERRIFIED that I'm going to have an accident in front of everyone. The only specifics the teachers were given is that I was born with Hirschsprung's Disease - a condition which means I was born with a segment of my colon missing and which flairs up at times.
I have surgery scheduled in late December, but what do I do in the meanwhile? I tried making an appointment with the adjustment counselor (the vice principal and nurse recommended I see her) but I couldn't stomach being in her presence; she was so patrionizing! The nurse is helpful, but I know that this teacher would get upset with me for telling her to talk to him. The vice principal once talked to a teacher after she discussed my health details in front of kids, but the teacher apparently didn't get the hint and talked about my health in front of kids two days later. I would talk to the teacher myself, but 1) I've done that twice face to face and once via email and 2) I'm so sick and tired of advocating for my health rights 24/7.
I try my absolute best to shield kids from my health details, because 1) it's obviously very private, and 2) I was teased for "being a goody two-shoes" who received "special accommodations" in seventh grade. I made the mistake of opening up to someone who I thought was my friend, only for her to turn on me, stop returning my hellos, and call me "selfish" for always needing to sit near the door. Knowing how immature people are just hearing the word "incontinence" or "urinary issues," I can only imagine people's response if I actually had an accident.
So, to sum it up, I have two questions:
1) How should I handle teachers who don't follow my 504? All it takes is a teacher not putting me near the door once and me having an accident, and that would be the end of a somewhat bearable high school experience.
2) Any other suggestions to dealing with urinaty gushing? I've experimented with numerous bladder control pad brands (Always Discrete is by far the best for me), I wear layers of clothes, I use baby powder and baking soda, and I make sure to hydrate and urinate often.
Suggestions for dealing with urinary gushing and teachers "forgetting" to obey 504?
Signed: Questions About Urinary Incontinence
Dear Questions About Urinary Incontinence,
TeenHealthFX can definitely appreciate how difficult this situation has been for you between managing the symptoms you have been dealing with, as well as the logistics at school. As far as how to manage until your surgery in December, it would definitely be best for you to discuss this directly with the specialists (Urology or Surgery) who are involved in your care.
In terms of the 504 accommodation issues, TeenHealthFX really admires how hard you have been working to advocate for yourself. However, if you feel your efforts are not working, then there needs to be more parental involvement so the school understands that this is mandatory. And if any additional medical letters are needed by the school, the medical professionals working with you should definitely be able to provide them.
Dealing with certain medical issues can sometimes take an emotional toll. It is normal and understandable that people may feel sad, angry, stressed or anxious about their diagnosis and the symptoms they are dealing with. If at any point you feel you could use some emotional support with all that you are going through, you might consider meeting with a reputable mental health professional, such as a clinical social worker or clinical psychologist. A therapist could also be someone to help advocate for your needs.
If you live in northern New Jersey and need help finding a therapist you can call the Access Center from Atlantic Behavioral Health at 888-247-1400. Outside of this area you can log onto the US Department of Health and Human Services Substance Abuse and Mental Health Services Administration website for referrals in your area. You can also contact your insurance company to get a list of in-network mental health providers or check with your school social worker or psychologist to get a list of referrals in your area.
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