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Ileo and going out with my kids ...

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Posted 7/2/2012 2:26 AM (GMT 0)
This could actually be a problem or and issue for any dad out there .... however having an ileo it is magnified quite a bit.

I have a 2 year old daughter who I want to show the world to! I love taking her to new places and teaching about all the different aspects of this wonderful life she is now embarking on .... however with that comes careful and meticulous planning.

I can't seem to leave the house for more than 4 - 5 hours with her. If I am alone .. no big deal, I find a restroom and skip along to my next destination as I run errands. However, if I am with my daughter I often wonder what it would be like if my bag suddenly filled up. I try to carefully plan what I eat before, take immodium, but it's never an exact science and my body seems to have a mind of it's own most of the time :)

We all watch basketball so much, and recently I took her to a ball game which is about an hour from our house, then park, walk to the stadium, watch the game and then if I have to go .. what do I do? This is a big fear I have. I try to always take someone else along who I trust, just incase of situations like this. However, it seems to be a really difficult thing for me to get over. Any suggestions? I can't exactly take her into the bathroom with me and watch me empty .. that's just not going to happen.

Also, recently I've been getting a LOT of output. Probably because I am eating a whole lot more ... but it is almost double what I had when I first left the hospital with this thing. I'm also gaining quite a bit of weight and "hiding" the bag under my clothing is becoming extremely challenging. Gosh ... life is really good now not having to bleed out and worry about being sick all the time. However, there are another set of challenges with this ileo .... I've accepted them but trying to control the eating and weight gain is also challenging.

Thanks for listening and any suggestions would be great!
Posted 7/2/2012 6:57 PM (GMT 0)
You take her in the bathroom with you. She's only 2 no one will say a thing. Most places even have those family bathrooms now.
I don't mean to sound smart, but how do you think Moms have been taking thei.r kids out alone since indoor plumbing came along? She's not going to care if she sees it, she won't even know its different. Parents take their kids in the same bathroom with them all the time, I'm sitting in Chuck E Cheese, and I've seen about 10th parents do it in the last 20 minutes. If you are really worried have her face the corner of the stall. But seriously don't let that keep you from taking her out. She won't be scarred by it, no one will think twice about a dad taking his 2 year old daughter in the bathroom with him. If she was 12 it might be an issue,lol. Or you can even take her in and lock her in the stall next to you. That's what I was doing with my son when he was 5 and 6, he's 7 now so he just waits inside the bathroom but outside the stall.
Posted 7/2/2012 7:03 PM (GMT 0)
One more thought, put her in a strolled, take her in, point the stroller at the corner of the stall, she can't see. Then put the strolled back in the car. Just make sure you clean the wheels,lol.
Posted 7/2/2012 7:14 PM (GMT 0)
Thanks so much for the response .. and yes you're being a smart allec :)

Look, it's not the seeing ... it's a lot to do with the smell too ... I know there's going to come a point where my daughter is going to make an embarrassing comment about that too. Regardless, the suggestions are good.
I thought of something else after I posted. I would carry an "emergency bag kit". "Bag & trash bag". So basically I could get some TP, pop the full bag off and put it into a trash bag seal it and throw away. Pop a fresh one on and then I'm good to go.

Anyone else done this?
Posted 7/2/2012 7:37 PM (GMT 0)
Ucfree, I totally understand about the weight issue. I am now on a diet because I have gained too much weight. My advice to you is not to let it get out of control. Try to find low fat foods that you can tolerate. I have found slim fast tastes good and also has some vitamins in it. I also walk 3 miles a day.

As far as being out with your daughter alone, well, you may be faced with emptying your bag in a stall with her. I have 2 daughters and both have been in the bathroom while I emptied my bag. Are you embarrassed or are you worried that it may frighten her? just tell her this is how mommy goes poop.
Posted 7/2/2012 7:39 PM (GMT 0)
The hollister 2 piece bags come with a little bag that you can put inside the main one. When it fills up, you pull it out and throw it in the garbage.
I have a ton of these because I never use them. If you want them, they are yours.
Posted 7/2/2012 7:45 PM (GMT 0)
Brian: I use Coloplast but this sounds quite interesting!! Do you have a part number or anything I can lookup online to see how it works?

answers4me2: It's just weird for me to pull my pants down and sit on a bowl to empty weird for me. However, if push comes to shove, I'll have to do it. She understands my "hurty". She gets it and she is an awesome girl. I'll have to muster up the energy to do it!
Posted 7/2/2012 7:52 PM (GMT 0)
Uc free,

I use devrom tablets and they totally do away with odor. I can empty anywhere and never have to worry about bad odors.

For some reason M9 drops don't work that well for me.

Only catch with Devrom is that you have to take it like 2 or 3 times a day so that it will work. If you miss a dose then the odor begins.

We have even been doing an experiment at my house with Devrom with my husband with totally normal plumbing. His poo really smells. :-)

Anyway he has been taking Devrom twice a day and we have noticed very little odor. I even told him to let it rip if he needed to fart while in bed when we were watching a movie. No odor. HAHA
Posted 7/2/2012 7:58 PM (GMT 0)
Uc free, I can empty my bag with panties and shorts pulled up. I usually pee, then pull up my clothes, then sit back down and empty bag, then tuck it back into my shorts. I just pull shorts under my bag until I empty.

Can you empty like that?
Posted 7/2/2012 8:03 PM (GMT 0)
I tried Activated Charcoal and that doesn't seem to be doing anythign for me.
I am going to try the Devrom next. Will keep you in the loop on how that works out. Usually if I use Ostofresh, which is a liquid to pour into the pouch .. it works wonders. However, it is not always convenient to use that sloshy stuff in the pouch ! :)

I cannot empty like that :( It's very uncomfy. Once I did empty standing up over an airplane toilet, what a mission but it worked! Those toilets are super small!! :)
Posted 7/2/2012 9:29 PM (GMT 0)
Just took 2 Devrom capsules ... fingers crossed :)
Posted 7/3/2012 2:54 AM (GMT 0)
Just empty however you need to...if you act like it's no big deal to your daughter, it will be no big deal to her. If you act weird about it, it'll be weird to her.

As for the smell I always use a teaspoon of hydrogen peroxide. It's cheaper and does the job! But honestly, her poop probably smells too so if she says anything, you can just laugh about it or play it down, whichever you prefer. It's all in how you present it.
Posted 7/3/2012 3:38 AM (GMT 0)
Devrom rocks!!
Posted 7/3/2012 2:15 PM (GMT 0)
ucfree- So I couldn't find anything as far as any info on these little bags being used to catch the output in your pouch and then throwing them away. Apparently they are supposed to be used as trash bags to throw the bag away after you take it off.
I suppose you could use something like little mini trash bags, put them in your pouch and close your 2 peice system over it. I would probably reccomend using a belt though just so that it doesn't come undone.
I put one together and took a pic for an example of what you may be able to do.
http://i574.photobucket.com/albums/ss184/ThirdgenTa/20120703_091107.jpg
http://i574.photobucket.com/albums/ss184/ThirdgenTa/20120703_091052.jpg

Also, where can I purchase this Devrom locally? You seemed to have purchased it pretty quickly. I can only find it sold online. I would like to pick some up today or tomorrow because I am going to some parties and don't want to smell up the bathroom.
Posted 7/3/2012 2:23 PM (GMT 0)
Yeh the trash bags are to throw away the pouch and barriers .... I don't believe they are to catch the output.

Devrom: went to pillbox and they just had them. They did say they don't usually stock them. I also see them on Amazon with prime shipping so it gets to you in 2 days. But that's not going to do you any good :( Sorry!

Anyone else know where the cheapest place to buy Devrom is?
Posted 7/3/2012 9:58 PM (GMT 0)
UCfree when I read your post I remembered something from a manual my gi gave me when I started going to him -- years before I decided on surgery. He had an anecdote about a woman who was contemplating surgery and was really worried about what her child would think (5 or 6 years old). She very carefully explained how this surgery would make mommy poop differently and change her body etc..... the child's response was, "Does this mean we'll be able to go to the zoo?"

Little kids don't care a bit how mommy or daddy poops, and if it smells, well, they may say that's gross or whatever, but poop does smell. I would construct a narrative for her that talks about how sick you were and now you have this bag that lets you, as you said, show her the world!

It seems clear that you have some discomfort w/the bag, and a lot of people do, no shame in that..... but really, that's about you not about your daughter .... no need to make her central as you work through it. Two year olds just want to be loved and cared for and protected as they explore new parts of life.... so do the regular stuff -- keep her fed and sometimes amused and make sure she doesn't get hit by cars etc.... and remind yourself that those things are way, way bigger than how much your poop smells and how it gets from your body to the toilet.
Posted 7/5/2012 4:58 AM (GMT 0)
All very good advice, thank you so much!
I'm not uncomfortable with the bag at all, actually, it was a decision I made in order to have a life with my kids. This is the story they will know when they grow up and are old enough to understand. My daughter actually already knows about the bag, knows it is "different" and she doesn't judge or treat me any differently. Kids are great eh? :) Wish adults could learn from kids sometimes ....

Thanks everyone .. glad I could get so much support here! :)
Posted 7/8/2012 2:13 AM (GMT 0)
Uc free, Are you still happy with the Devrom? I love it and now my husband is hooked. It is expensive so thankfully my insurance pays for it. Just curious if you were still "smelling" good results with Devrom?? HAHA
Posted 7/8/2012 2:20 AM (GMT 0)
I need to look into this stuff. I emailed the company to see if they sold it locally, but they sent me an email back saying to order it from the website.

I was at a 4th of july party that was outside. I decided to use the bathroom AFTER everyone was done. Well when I came out someone made a comment about someone must have farted and it stinks. They didn't really know it was me, but still I hope it doesn't happen again.
Posted 7/8/2012 4:53 AM (GMT 0)
The Devrom is awesome! How do you get the insurance to pay for it?
Posted 7/8/2012 4:31 PM (GMT 0)
Uc free, I order all my supplies from Edgepark and that includes Devrom. My insurance pays for M9 drops also. Who do you order from?
Posted 7/8/2012 4:34 PM (GMT 0)
Brian, Have you looked on Amazon to purchase Devrom? Purchase one bottle and see if it works for you. I would pay out of pocket for Devrom because it works so well.
Posted 7/9/2012 1:12 AM (GMT 0)
Edgepark!! I am going to call them tomorrow! :)
Posted 7/9/2012 5:46 PM (GMT 0)
Thanks guys. I am going to put it on my next order with edgepark!
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