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Posted 1/15/2013 11:29 AM (GMT -5)
I had my j-pouch created with loop ileo on Friday. I was discharged yesterday. My surgeon said I barely have any scar tissue for someone who has had 5 surgeries. He also fixed my mid-line incision I had to get when I had my stomach ulcer. I no longer have a "butt belly."

I haven't changed my loop ileo bag on my own yet. I used to be able to change my bag in less than a minute, but this loop ileo makes me nervous. I feel like I got hit by a bus, but I know the drill with this surgery thing. My follow-up is in 6 weeks then we will discuss take down then. It is weird even thinking about a take down.
Posted 1/15/2013 1:21 PM (GMT -5)
Hi Sara-

You feel like you got hit by a bus because you basically got hit by a bus. The jpouch-creation operation is hefty - it took the starch out of me and I needed longer to get my energy back than after the colectomy. Walk a lot, as much as you can, and when you get home do everything you are able to but not more. I needed 3 weeks and then I went back to work.
I had an end stoma and then a loop - my loop didn't really behave much differently than the end stoma, except that its output was more liquid. In terms of bag system, I just kept doing what I had been doing and everything was fine, so you have nothing to get nervous about just because it's a different kind of stoma. The end stoma was acting up and causing leaks from the 3td to the 6th week, and loop stoma leaked through a couple of bags on one evening only and then everything was smooth sailing after that, until I had the take down.
I know what you mean about the idea of take-down being weird. I had the stoma for 12 months total, and the idea of not having it and going normally out the butt was really hard to believe.

Take things one at a time and don't think about six weeks down the line, you'll be feeling a lot more normal then than you do now.

You're almost there, isn't it a long haul?

Today I was describing having UC and the entire surgical process to someone, and she said, "it's so amazing that they can do that." That was one of the best responses I've heard from other people, but I now feel that the same way and I'm grateful that I did go through all that.

Post Edited (B'Dereh) : 1/15/2013 11:25:49 AM (GMT-7)

Posted 1/15/2013 2:29 PM (GMT -5)
Wow home after 4 days....that's great. It's totally normal to feel like you got hit by a truck. I remember that feeling all too well.

I'm not going to lie to you....the loop ileo is the pits. I never had an end ileo so I can't compare the two but boy, did I struggle with that loop. We didn't get along very well! But it's only temporary and hopefully yours won't give you the grief mine gave me.

Hang in there.... you are almost done! :)
Posted 1/15/2013 5:42 PM (GMT -5)
Happy to hear your surgery went well. Rest up! I have a loop ileo. Not knowing what an end one is like, I seem to be doing ok with it. Mine isn't round, it's more oval so I have to cut the wafers to fit around her.

Won't take you long to get it figured out!

Happy healing!

K
Posted 1/15/2013 8:09 PM (GMT -5)
My loop is also giving me fits. I was spoiled with a "perfect" end stoma before the JPouch created and Loop.
Good Luck. I have 5 more weeks with it and with a lot of prayer and maybe some more experimenting, I may be able to get to takedown without 3rd degree burns. Maybe. One day one trick will work like a charm, the next week, it won't. I hope you have much better luck than I have!

Jen
Posted 1/16/2013 9:16 AM (GMT -5)
Glad you're home and doing reasonably well.

There have been folks on this forum who had a lot of trouble w/a loop ileo and were miserable at first, but then had a creative nurse figure out some modifications that wored. So hang in if you have trouble, there are ways out...
Posted 1/16/2013 10:31 AM (GMT -5)
My output is like water no matter what I eat. Talk about going from one extreme to another. Is is because I am still fresh out from surgery? I am drinking G2 Gatorade like it is my job to avoid dehydration.
Posted 1/16/2013 10:38 AM (GMT -5)
My output was pure water the entire time. The loop ileo is pretty much a direct route right from your stomach and out into the bag. Your transit time is super fast. You can try taking Imodium (with your doctors ok) but I found that it turned my output to a pasty glue that was impossible to empty out of the bag. So I just dealt with the liquid output and anxiously awaited takedown. I never got dehydrated....I just made sure I drank plenty of water. Salt is your friend right now too.
Posted 1/16/2013 2:54 PM (GMT -5)
The loop ileo is definitely not a direct route from your stomach into the bag. Lots of people have no problems at all whatsoever with loop ileos. I have had two. One acted no different than my first end ileo. The second - was higher up in my small intestine and had increased output. There are plenty of things you can do to slow down output. But I wouldn't worry about it, unless you think its a problem. If it is... you want to stay away from sugary and fake surgary stuff - like gatoraide and G2. They are the worst. You would need to focus on pedialyte, ceralyte, or a true WHO oral rehydration solution.

If you could change your bag in less than a minute with an end ileo.. I see no reason why you couldn't do the same with a loop. Just have it pre-measured. But remember after surgery it will decrease in size for a month or so. So check it every now and then.
good luck
Posted 1/16/2013 3:18 PM (GMT -5)

ddd45 said...
The loop ileo is definitely not a direct route from your stomach into the bag.

I was saying that figuratively not literally. It certainly is a short route.
Posted 1/16/2013 4:40 PM (GMT -5)
I am nervous about changing the bag because the skin on one side of my stoma is "dipped" down. It isn't flat all the way around. My stoma nurse told me to use "Hollister Hollihesive" on the dip.

Should I be adding salt to my food? I don't know why the Cleveland Clinic always recommends G2 to drink. It has a lot less sugar than regular gatorade, but it is still sugar.
Posted 1/16/2013 6:01 PM (GMT -5)
I don't know about the salt but I remember I had a ton of extremely watery output for the first 5-6 days after sugery #2. It was coming out so fast they eventually changed my bag to one that was about the size of a piece of carry-on luggage. My body did adjust and things smoothed out and I returned to a "normal" output. I am probably in the minority here because I actually preferred the loop ileo because my end one was so noisy and the loop one never made a peep. Good luck!

Posted 1/17/2013 12:22 AM (GMT -5)

Scrap Girl said...
It was coming out so fast they eventually changed my bag to one that was about the size of a piece of carry-on luggage.

Sorry, I'm sure this wasn't pleasant, but this made me LOL
Posted 1/17/2013 12:22 AM (GMT -5)
Salt is anyone without a colons friend. And there is nothing wrong with g2. Drink it if it works for you.
My drs recommended gatorade powder and when mixing it add 2x the amount of water and add almost a teaspoon of table salt. Cuts way back on the sugar and keeps you hydrayed and ha the salt that your body needs.
As far as output, the entire time i had my loop ileo it was pure liquid. It's normal.
I also had a dip in my tummy under my stoma and convex wafer fixed it up without the need for anything additional. Oh, and i changed my one piece everyday to eliminate leaks and raw skin around stoma. Worked perfect and changing every day when i woke up wasn't a drama. Took only 2 minutes each morning.
Easy
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