OK, my 18 year old son just had step 1 of the J-pouch in April. He had some post op complications and wants to wait for step 2 b/c he wants to go away to college in the fall.
Question 1 - When he empties his bag it smells really bad. Do the drops they make to put in the bag help. Any other suggestions?
Question 2 - He usually changes his bag in the morning in the shower. What's he going to do at school?
I'm so paranoid about this whole thing. He, on the other hand, seems fine.

Hi ucsonmom. I understand your worry. I have 3 kids and pray constantly they don't ever have to deal with what I deal with. I had step 1 on April 24th at the Mayo Clinic. They gave me drops called M9 and they work great. In fact, my bag rarely has odor unless I eat something really strong like onions or brocolli. Can't help on the waiting part because I haven't done that step yet.

The drops do help! My ET nurse ordered a large bottle that lasted a long time. In fact I never got to the bottom before my takedown 3 months later.

As for your son's college, if you speak to the Disability Office at the college they will be tell you about accomodations available and you can request certain things- you might be able to get him a room with a private bathroom.

I know it's scary after complications but takedown is generally an easier surgery to recover from. I was back to college within 4 weeks of my takedown (It was done during Winter Break).

I kinda went through the same thing as your son. i had my surgery a year ago at age 18, and had some complications as well (had a leak and ended up in icu for a week). But honestly, i wasn't comfortable enough to go to school with a bag, so i held off from school. i had my takedown in Jan of this year and probably could have gone to the winter semester of college. but i am in summerschool now without a bag, and things are good. But if your son really wants to start with a bag, and is staying in dorms, he can request a room with its own bathroom for medical reasons. i thought about doing that, but found another place with a bath instead.

I have found pepto bismol very effective for stool odor. Prior to my surgeries I had used it for years-taking one prior to a meal which was spicy and I knew would cause smelly gas. After my first surgery while I had the ostomy I did the same thing-I didn't need it daily- took it when I knew I was eating something which would cause odor or after I noticed a strong odor-it works wonders! Be aware though that it causes black stools and back of tongue can get darkened the day after taken. I preferred preventing the odor all together instead of using drops/liquid in bag.

My daughter puts 2 altoids in the bag. It works wonders.

The drops work fantastically. I'm not sure what you're picturing when it comes to dorm showers, but I've never been in one that doesn't have a curtain around it. So he should be able to change there with no problem--he can just take a plastic bag to stow the garbage in.

More broadly, I would say that if he's not worried about these things, you shouldn't be worrying for him. Figuring out the work-arounds is part of growing up, and it sounds like he's ready to go for it! Testament to your fantastic work as his parent.

I don't know how schools vary, however, when I asked for a pvt bathroom there was no option. You can pay for a room and not have a roommate but pay for the cost of 4 people or 2 people if the dorm has that type of room.
We has a prepaid dorm plan that only covered sharing a bedroom. My son would never do that.
We are in the process of getting him an apt.
As for changing the bag, do you mean the entire appliance everyday?
My son used a 2 piece. He also used dispposable bags since ins paid for them, closed end with filters.
I also used the same when I had my ostomy.
If you mean he changes the bag in the shower how does he dispose of the contents?
My son took his flange off ever 4-5 days before showering.Then put the new one on while very dry, used a hair dryer. Would lean over a waste basket in case the stoma started to act up. If he eats marshmallows that helps, Also an ice cube on the stoma will stop it, no feeling there.
If he's using a one piece like they do in the hospital, you many want to call all the companies or edgepark and get free samples.
They all have 800 numbers.

I'm glad that your son is doing well with his ostomy. I can understand your concerns, but I would be proud at his ability to adapt to difficult circumstances and his willingness to try something like this. I have a perm ileo and I can tell you attitude is everything and he sounds like he's got that down.

If he isn't particularly concerned about the appliance change issue, let him figure it out. He's old enough and he'll know what his limits are.

My stoma nurse gave me osto fresh drops, which don't seem to do anything at all. Also, I've read on here that a few drops of 3% hydrogen peroxide help, but I've never tried it, so I can't speak to it.

Hello, I am glad he is doing well. He could probably have the takedown and make it on time for school in September. I had my takedown 9 days ago and actually feel really well. I have my energy back and my b/m's are only about 10 a day which I am told is good for a week out.. so as a younger male, he would do fine.

Anyway, I wish him the best with everything and don't worry, he will make the right decisions.

Thanks for all the input. I guess I really need to work on the letting go part. He's very open about his ileostomy which I think is great, but that also leaves him open to ridicule and you hate to see that happen with your kids. Thanks again!

If you son is comfortable with it that's all that matters. Also, I do believe that kids in college are more accepting than those in HS. At least that's what I have noticed in my career working on college campuses.

Sue

yes, you are right. these are questions only a mum would think of.

he'll deal with college like he's tackled his illness and overcome it. the funny thing i've only recently discovered is that I underestimated how people react when they know what you've had to deal with.

what a character your son has to forge ahead with it all and leave the worrying behind him, what's that song say? ' worrying is like chewing bubblegum to solve an algebra equation.'

with his attitude, expect big things...

I actually can not recommend enough that you and you're son sit down and talk some more about him going to college. I chose to go that route also, after my first surgery and it is incredibly difficult to learn to deal with an colostomy bag, and cope with the experience of college at the same time. Also, the best way I had for dealing with the dorm showers and my bag, was showering every 3 to 4 days, and changing the bag and flange in the shower. I would finish showering and then dry off around the bag in the shower. He will find it easier to deal with if he empties his bag right before showering though. You may also want to look into a waste belt, that goes around the stomach and on top of the flange, to help keep it in place. With all the walking around he does in college, it was a life saver for me.

I know I didn't want to hear that I should wait for college, and the good Lord knows I wouldn't have listened to my own advice, but having your son take a year off is the best thing I could ever recommend in hindsight. My grades fell, and made it incredibly difficult to get them back up after the first year.

If you have any questions please send me a pm, and I would be happy to help in any way that I can.

-Rob