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lots of questions about ileo bag still and a little bit of venting :/

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Posted 10/22/2011 7:51 AM (GMT 0)
just got new convex wafers beautiful but 3rd day it has my skin itching but no rash has appeared so far it still freaks me out to change the whole wafer and bag because i am ALWAYS leaking food and stuff and since i have had my convex my out put has been green from any food i eat is that normal ????

i am going to change my wafer now (scared ) my mom is sleep i have been starting to do ALOT OF THINGS on my own( like getting out of bed is the hardest thing to do alone but i still do it :-) )  only so when im 100% better i wont be dependent on anyone !

also today was my 1st time showering (have been taking bird baths) and i was nervous is it ok to shower with your ileostomy bag on ??? and if you dont have your bag on what happens if you start to leak should you shower before you eat breakfat then so nothing comes out??????

huh here i go to change wish me luck i usually get teary eyed or fell like im doing every thing wrong if you pray PLEASE PRAY FOR ME ! thanks :) -jackie

Posted 10/22/2011 12:56 PM (GMT 0)
Jackie, it is scary at first, but it does get easier. You can do this!

One tip I learned here is to eat 4-6 marshmallows before you change your bag. They slow down the output a lot. Also try for a lower output time of day -- usually late morning for me, although it varies for different people.

It is fine to shower w/the bag on. You might want to check out sure seals, which are clear plastic (like tegaderm for the IV's) that go over the wafer and help hold it better. But it works without them too. You can dry the bag with a towel and/or a hair dryer.

If you shower with the bag off and something comes out, it just goes down the drain, no big deal. Be sure to only use a very mild, unscented soap around your stoma if you use soap there. I usually have some paper towels handy to dry my stoma area when I get out and hold over in case there are any leaks.

The green stuff is bile, what your digestive system makes all the time..... after a week or two you won't have so much of it, although a lot of people have it in the morning, or after any time when you haven't been eating much.

Hang in -- you're doing great. Oh, and it's OK to let people help you now, doesn't mean you'll be dependent on them forever.....you're still recovering from surgery, and it's all much easier when you feel better.
Posted 10/23/2011 1:40 AM (GMT 0)
Hang in there Jackie. There is a huge learning curve with an ileostomy. I got frustrated to tears more times than I can count when I was figuring it out. Also, don't be afraid to have people help. The day I got out of the hospital I had the great idea of trying to change my appliance by myself when I was home alone. It was a disaster. Output got all over, I cut the hole too big, and got the one-piece appliance on crooked. My husband came home to find me in tears. After that, I had my husband or mom help me for about a month until I finally felt confident to do it on my own. It is very overwhelming. Needing help at first says nothing about the ability to be independent later. No doubt you will be a pro at it eventually. Until then, do not be afraid to lean on others and ask for help.

It is okay to get your pouch wet, but I didn't want to the first few months after surgery. My incision had opened, and I didn't want to take chances at having my pouch get wet and fall off and perhaps get stool in the wound. So I put a piece of Glad Press and Seal over my belly with waterproof tape (the stretchy tan Nexcare Absolute Waterproof Tape works great). Later, when I got more confident after my incision healed, I started taking showers without it and realized that pouches stay on fine after getting wet.

And if you want to shower without a pouch, that works wonderfully too. I love taking a shower without a pouch on before my change. I use the basic Dial Gold Bar soap. Yeah... my stoma outputs in the shower sometimes. It just goes down the drain, and I give the tub a good clean afterwards. As Blueglass said, you can wrap paper towels around your stoma to catch output while you are drying off. I also have this stoma cup device that I use. I wrap paper towels around the stoma and then put this cap on over it which allows me to be hands free for a few minutes while I get ready for the change. http://www.cmostomysupply.com/s_stomacup.html

I also use the marshmallow trick mentioned below. 5-6 about 10 minutes before the change works well for me.

I applaud you for going back to school three weeks post-op. I honestly couldn't have fathomed going back to work that soon. I just wasn't mentally ready. You should not feel bad one bit for not getting your homework done. I had trouble even writing emails in the first few weeks after surgery. I was soooooo sleepy. I took naps every few hours and even walking around the block made me want to take an hour-long nap. I know you are much younger, but you still had major, major surgery. Please don't be so hard on yourself. You are doing amazing and have such an incredibly positive attitude!
Posted 10/23/2011 1:39 PM (GMT 0)
Jackie, I seriously admire you! You seem to have come such a long way in your recovery so quickly. It's very encouraging to see someone else around my age going through this and doing so well. I just got home a couple of days ago, and am also having a hard time letting other people do things for me... hehe. It's definitely important to remember that this was major surgery we had- my dad keeps reminding me that, "You just got cut open with a knife. It's okay that you feel lousy and need help!" Hehe. And I think it's amazing that you are showering on your own! I had to have my mom help me wash my hair and set me up for a spongebath yesterday... it's still too hard for me to stand for long or move around a lot with all the staples still in my incision.

Anyway, what the others said is probably better advice than I'd be able to give at this point, I just wanted to encourage you that you're doing great! Don't worry about having missed a bit of school- you are a competent and smart young woman, and will catch up in no time, I'm sure.
Posted 10/23/2011 3:44 PM (GMT 0)
ditto the others.. you sound like you're doing really great!! it's early days though, so just take it easy and let others help you. Take care and hang in there.. you're coping brilliantly! Sarah
Posted 10/23/2011 4:19 PM (GMT 0)
     Jackie, it is scary at first.  I remember the day after my operation thinking...."geez, I will never be able to do this stuff."  It seemed sooo overwhelming.  Just the thought of how to order ostomy supplies and what kind of ostomy supplies on top of wondering what KIND of supplies would be best, sent me into a tailspin.

     I had a great ostomy nurse in the hospital and HE...yes I had a male nurse..lol...gave me his card and told me to call anytime I had a question.  I was sent home with Hollister products but, after having two of them break on me, switched to one piece Coloplast Sensura bags and never looked back. 

     I find changing my appliance in the morning is much better.  My output is just about nil then.  I take baths and showers with no problems.  However, it is best to dry the back of the bag to prevent chaffing on the skin under the bag, which has happened to me.  I use triple action paste when in that situation and it gets rid of the redness pronto.  I change my appliance every fourth day.

     By the way, I have a permanent ileo.  I was told the green output is most likely bile and not to worry.  Sometimes tea or green veggies will give it a green tinge too.

Posted 10/23/2011 5:07 PM (GMT 0)
thanks you EVERYONE
i sucsessfully changed my bag yeterday i was so excited i scraped my wafer and my thing i us to meausure it and a pice of gause into my sugery book (real quick i have a sugerybook my bestfriend and i started it the day before my sugery and she asked me questions she wrote down what we were doing long story short i have been writing my emotions physicall pain down since october 10 ......continuing i also allow my mom little sister dad friends what they think when im sleepor silly things ive said to them in the hospital) anyway it took me about 20-30 min. to change the whole thing alone i told no one i was going to change it and i took deep breaths and the convex waffer my mom and i didnt do such a hot job on it and that was the only extra i had the rest were hollister soinstead of putting i sticky stuff around it i put 2 but the second one was on top of the 1st one going down (if that makes any sence) .

@ blueglass, blueheron , ironmum thanks ill defnitly try thoes things andthanks for the encouragment !!!!
@christine1946 i drink so much tea about 4 mugs a day at least so that makes me feel better to know that its probally just the tea.
@ju330 u thought i forgot you nope :) ....im glad u admire me it gives me confidince to do more things since you just got the sugery i think you would find it cool to start a sugery journal better late than never !!!!!! it helps me see my progress alot and others and if you think something might be wrong with you at any time you can look back at the book to find any patteren make sure u put the date and time :)
Posted 10/23/2011 7:15 PM (GMT 0)
Jackie,

The surgery book is such a great idea. I kept a small journal/notebook while in the hospital too. I only wrote in it a little bit because I was so tired. I wish so much now that I had recorded more in it. Once healthy, it is really neat to look back at what you went through and how far you have come. Another regret I have is that I didn't take photos of anything. There are no photos of when I got down to 107 pounds, hardly any of me in the hospital, only a few of my stoma placement, and none of my stapled belly or gnarly open wound when my incision opened. I have no idea why I didn't document things better. It is not like me. Usually I love journaling and recording my life. I have kept a journal ever since I was a kid. My lapse in documenting things when I was sick must have been because I was so tired and overwhelmed. I think you will be very happy later that you are documenting things so well.
Posted 10/25/2011 1:23 AM (GMT 0)
I have kept a journal consistently since around the time I started high school- it's always been thereapeutic for me to write about things, specifically with having UC. I haven't done much journaling since the surgery, but will start up again this week- just had so much else going on until now, being in the hospital, getting settled at home, and all that. I made sure to take "before" pictures of my belly last week, and will take some of my staples, etc., before they are taken out next week. I hope to take pictures in a bikini with my "battle wounds" next summer. ;)
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