when did you start to feel comfortable going out?

I had my proctocolectomy on 5-1. I currently have a temp ileo with some leaking issues. Leaking issues aside, I am wondering when you felt comfortable with everything to go out for more then an hour. Like to dinner with friends or even someones house? I am fine going out but only when I know I will be able to run home if needed.

Leaking issues can make the whole thing so much more of a hassle than it needs to be. I had a temporarily loop ileo for a couple months that leaked so bad whenever it wanted that I had to change my appliance every single morning in order to feel confident going out in public. I also always kept extra supplies with me in the car. Always. I only had to use them one time, but all the other days I just always felt better knowing that if something did happen, I would be able to take care of it without having to completely run home.

I am a pretty sociable person in general, so I was immediately eager to get out and do something like have dinner with friends or run errands as soon as my pain subsided. It's good to get up and about as soon as you feel ready. It also keeps you distracted from the crap that you're going through. Sitting at home wallowing in all the annoyances I was experiencing was the worst! So my advice is to start getting up and about as soon as you feel ready, but the sooner the better!

I just started being somewhat comfortable emptying my bag in public. I was sprung from the hospital (after getting the ileostomy) on April 5th. I was very very sick and weak and just started getting out of the house at all a couple of weeks ago for short trips. Twice this week I went out long enough to have to drain my bag. In fact, one of those days I had to drain it twice. Once was at my FIL's house which was no big deal really. He knows what's up. The other time was in a restaurant. Now, this stall had a wide opening where the door shut and I have always hated that, paranoid that people were going to look at me or something (never said I wasn't weird). There was another woman and her child in the restroom finishing up and getting ready to wash their hands and stuff. And that would have made me uncomfortable to have a BM even before I got sick and so forth. I just did everything quietly and if she thought I was in the potty too long, then let her think it is my time of the month or whatever she wanted to think. It needed to be drained and I'm new at this compared to some others so it takes a few minutes.

Jen

Oh yeah... My nurse told me to always be prepared with supplies. I didn't do that myself and it was almost a bad answer. When I went to my FIL's and emptied the bag, I discovered my clip was needing to be replaced and may or may not stay together the rest of the evening I was out. So I got some paper wound care tape from him (he had had major surgery a few years ago and still had some). So we taped the clip shut on the end with that. When I went again at the restaurant, I had a container of bandaids in my purse to use as tape to hold the clip closed.

If you choose to be responsible and keep some supplies with you, don't leave them in your car!!! the heat and the cold of summer and winter can mess with the adhesive on the wafers. I do remember that warning. My nurse also told me to make sure I made my orders for new bags when I still had a couple of weeks' worth at home. Simply because they sometimes leave them out on your porch step or something and the heat ruins them. So when you get your shipment, use one of the "new" ones next, while you still have some of the ones you know are good in supply. You want to make sure you are covered in case you have to call and order replacements for the ruined items.

Did they tell you to keep your clips? When you order your supplies, they rarely send you a clip for each bag. I was warned that sometimes they forget to send them at all. When I made my order after getting out of the hospital, the company sent me one clip for ever two bags I received. Apparently these clips are like fine gold.

Jen

I had no choice but to start going out pretty quickly. My surgeon and GI were an hour away, so I had to go out for a while to follow up with them. My kids swim in the winter, so I started going to day-long meets about two weeks post op.

Also, you may look into the Absorb gel thingies that you can put in your pouch. It turns your output into this gel like consistency without having to really jack up what you are eating.

Jen,

I have a funny story for you. On one of my trips in one of the foreign countries the lock on a door did not work right. I was unrolling my pouch and draining and lo and behold didn't some woman native to that country open the door. She was like Auuuugh I am so sorry and she shut it right away. I was like thinking the natives here must think we Americans do things VERY differently. I forget what country it was but it was in a remote part of the world. HOPING I get to travel again or at this point I would settle for being able to have my stoma work. Rosemary