Community Forum

Hello everyone. My name is Alexis and I am 17 years old with Crohn's Disease. I have had a "temporary" colostomy for about 2 years now. And I say "temporary" because there is a large chance that I will have to have it for the rest of my life. Anyway, I am really worried about going to college next year with a bag and having a roomate: how she will react, understand, and feel. I am afraid that it will make her uncomfortable, especially the smell of the contents of the bag when I need to empty it and change it.

Does anyone know what is best for getting rid of the smell of the bag? I have tried a couple of sprays/drops from ostomy websites but they havent completely gotten rid of the smell. Also, if you have any tips on how to handle a roomate next year with the bag, please let me know.

Thank you!

 Reply posted for bellowsrc.

Part 2:

As for the more practical concerns, many college dorms have communal bathrooms - people may not even realize its you! LOL As many others have said, dorms have a smell of their own. When I have to change my bag in a more public situation, I get as much done as possible before I actually take it off - cutting the shape out, forming my paste strips, etc. I've even managed to change it in small bathroom stalls. You may be able to set up a way to let your roommate know you're changing it in the room, so she can stay outside til your done. To dispose of the bag after I've changed it, I use small garbage bags that have a light scent to them (as many others have said) I find them in the regular garbage bag aisle. You also could use plastic shopping bags from the store. Just take whatever bag you use straight to the garbage room - now THATS a place that smells!!!!

Be confident and know that you will get a system that works well for you. Be yourself and you'll find friends that will support you and help you out and not care about your CD or your ostomy. Most of all - have fun! Its the 2nd best reason to go to college! :-)

~Ruth

PS As a former Resident Assistant, let your RA know, privately, about your condition and any assistance you may need. (Chances are they already know if you discussed it with your school ahead of time.) They (should) have a wealth of information, or know who to send you to. If your RA isn't the greatest, find another one you can talk to.

 Reply posted for sixela.

 Hi Alexis,

I was concerned when I went to college myself. Although I didn't have my ostomy yet, I had similar concerns about my Crohn's and bathroom frequency & smells. I originally contacted my school and let them know my situation; I included a letter from my doctor stating I needed to be close to a bathroom because of my disease. The school was originally going to put me in an upperclassmen dorm where each room had its own bathroom. They told me I would only have a roommate if someone with a similar situation also attended school. Not wanting to feel more weird, I chose to live in the Freshman dorm anyway - the bathrooms weren't too far away from my room, so I figured I'd be ok.

I don't regret my choice at all. I can't remember when I first started talking to my roommate & floormates about my disease. I know it was fairly early in the year. I do tell most people about my disease...I don't start out with all the details, but they know I have it, and as I get to know them better they end up learning more and more. Nowadays people are hearing about the disease more and knowing someone that has it. Most of the time people start asking questions because they really want to know about it. 

My roommate and friends were all very supportive and noone ever made fun of me for how many times I went to the bathroom or how long I took in there. (Or any smells) Because I had been so open with them about it, when I had to go back on Prednisone half-way through my freshman year, they were my biggest supporters! I have massive mood swings on P & will flip out on anyone for absolutely no reason at all!! My friends made it into a game and had "Ruth's B** list" posted on a wall - anyone I flipped out on got on the list...it became a competition to see who could get on it the most. They even helped explain when I tweaked out on a random passer-by who didn't know what was going on. 

(Part 1 b/c I had a lot to say) 

 Reply posted for sixela.

I hope I can help you! My mom had a colostomy and urostomy, so she had and did search everywhere to find something to put pouches in and discard the smell.

well, we found it in the baby area. it is a package of bags that are sented for diapers, and they are great for pouches. also you can find doggie doodle bags that are scented also. I hope this helps you, as it did my mom.  good luck. and if you are like my mom, you will be so clean, that no one will ever know, you have one...birp it in the bathroom. then spray.. everyone has their own smell honey.. Good luck at college. Sharron

 Reply posted for sixela.

Dear College-bound:

I have lived with my illeostomy for nearly twelve years now. I find that I need to adapt my clothing choices and a few rare activities, but live a very normal life. If I show up authentically around others, I find acceptance. It's an inside job! I also find the M-9 products (drops used religiously) have been the best odor-fighters so as not to offend my partner or family. Hang in there! And remember you are not  your disease. -Heidi

 Reply posted for sixela.

Dear Sixela,

I just wanted to add that you are worried about the smell of the bag.  When was the last time you stayed in a Dorm.  Nothing smells the same for a long time.  My son comes home and I want to fumigate everything.  They all have all kinds of air sprays and fans and cleaners.

My cousin married a gal who has a bag and I have seen her at all kinds of family events and I never smelled anything.  I will find out what her secret is and let you know.  I will need to use the same process for a while.

I have had this a long time.  My spine is fusing and I have all kinds of problems.  It is good that you won't have to deal with the cumulative effects of your body working with a body part that isn't doing it's job and throwing all those toxins in your body.

I had problems since I was 15-16 but I didn't know what it was.  I was told irritable bowel.  But I have 2 great kids, got a business degree, a 25 yr Banking career and I hope after this surgery I can go back to school.  Just don't give up.

God Bless

Help: College with Colostomy BagDear Sixela,

What a wonderful time in your life and you have so much to look forward.  I am 50 with UC and I am going on Thursday to make arrangements for my surgery. 

My son was born 20 year ago with a really rare physical problems that required 30 surgeries to correct.  He spent half his life in a wheelchair and was home tutored.

He never went on a date.  But it is so different now.  He is in his 2nd year History major. He wants to be a teacher.  He is a 2nd degree black belt which is amazing because of the braces on his legs and he cant bend his fingers.  But he does everything.  It takes him a little longer but he types all his own papers.  He is a manager on the Football team and he would like to graduate from N D someday.

What I am trying to say is you will be fine.  You will have rough days....all the kids do.  But you will make it because you have been through things that those others could not even imagine.  Tony always tried to hide his problems but we found that  more people actually talked to him and was more open when he didnt hide the braces or his hands.  He had a cleft palate also and is legally blind.

When we went to look at colleges, we looked for ones that were open and accomodating to non-traditional students.  You make sure that financial aide knows about this also.  The people that work in the office for non-traditional students work as a team to set up your housing and classes.  I would want to make sure that bathrooms are close by and like in Tonys case, his classes were scheduled close to his dorm just in case there was an emergency

There is money available to help through the Office of Vocational Rehabilitation and you should work on that now if you havent already started.

Above  all just pray for the right answers.  If you would have a major problem with a room mate, they will give you the opportunity to change.