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2nd day out of the hospital

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Posted 10/16/2011 3:06 PM (GMT 0)
hello healling wellfamily today is my 2nd FULL DAY out ot the hospital i have realized that are body does so much simple stuff for us that we take for granted

LIKE BREATHING

my stoma is really flat they say it looks like a pair of lips and since ive beeen out i had to change the whole bag 2x wich is irratating my skin A WHOLEEE LOT in the hospital i had a lot of panic attaks and yesterday was my first time being able tolook at my staples and not shed a tear (thanks to my dad)...

im happythat i have a lot of support only 1or 2 ppl that i thought was my friends didnt visitor  say get well or anything but thats ok  have more postive ppl ..breathing is kinda difficult for me but i have this breathy thingy to help me.

i named my stmoa MR.WIGGELS because i felt him wiggle before i saw it (which was like the 4th day i say the whole thing)

P.S.i use the deodrint stuff but i always feel that i smell myself ..weird 

Posted 10/16/2011 4:03 PM (GMT 0)
Welcome home! Sounds like you're doing very well. Mr Wiggles is a great name!

The breathing gets better, keep doing the exercises. Even after this more minor surgery I just had, it took over a week before I felt like I was breathing right again.

Did you look into using a convex wafer? You are probably going to need it with a flat stoma, that can help a lot with the leaking.

Great that so many people visited you, and just because someone didn't, it doesn't mean they aren't your friend.... it is sometimes too hard for some people for their own reasons that have nothing to do with you. Still you need those positive people now.

The smell is really bad at first, but it gets better. You can try M9 drops or a little hydrogen peroxide (3%) in the bag. Some of the deodorants don't work very well for some people.

Hang in and do ask specific questions.... if you continue to have leaking/irritation problems, please post what products you;re using and people here can help.
Posted 10/17/2011 11:39 AM (GMT 0)
so glad you're home! i agree with blueglass, you probably need a convex wafer. maybe adapt rings or eakin seals will be a good idea too! have you tried those? it is also recommended to try various types of companies. call the companies, they'll send you free samples and you can experiment what works for you best.

your breathing will improve. love your stoma name :) rest!! it's wonderful you have so much support :) let others take care of you now. feel free to ask any questions and if your skin irritation gets too bad, don't let it get worse, ask the stoma nurse to take a look at it. let us know how you're doing!
Posted 10/17/2011 11:09 PM (GMT 0)
A convex wafer should definitely help...surprised the stoma nurse didn't outfit you with that type to begin with...please be sure to stay on top of the irritation and get back to the nurse for some assistance especially this early on since it can be a tad overwhelming until you get a better comfort factor going for yourself

Your young, your friends are young, they probably just don't know what to do or say and stay away which is not the right thing to do but I am sure it has more to do with that then purposely ignoring you. When you feel a bit better give them a call to just chat to break the ice...especially if they are friends you want to maintain a relationship with. If you let things go too long and fester then it is even tougher to pick back up.

Welcome Home!!!!
Posted 10/18/2011 2:56 AM (GMT 0)
So, my surgery is next week....why is it hard to breathe??? Are you in alot of pain?
Posted 10/18/2011 3:44 AM (GMT 0)
Jackie,

Welcome home! The breathing gets better. Hope you are using a convex wafer? Hopefully in time your stoma will stick out? Be sure when you change the appliance to use unisolve to dissolve the sticky, then as you pull up on the wafer, push your skin gently away from it, do not pull the wafer up. PUsh down on the skin gently then lift the wafer off.

After you wipe with plain water around the stoma or an UNSCENTED NO LOTION soap and rinse that off, and dry, there are non-alcohol skin protective barrier wipes that you put on your skin and let dry, then a nice eakin slim seal which is like a donut you put around the stoma, then your hopefully convex wafer. It is soooo much easier if the stoma sticks out, but it is as it is.

Good luck. I passed out two times when I was first home and learning to change. Luckily I had the VNA nurse for 2 months. You can get this service you know. Just ask your doc to request it.

Rosemary
Posted 10/18/2011 3:48 AM (GMT 0)
Another UC wife is right, if you are young, I think your friends are just a bit freaked and do not know what to say. BUt as she says, give a call when you are ready and once they hear your voice they will get the clue that you are the same person you were before. They will come around.

This is hard enough in the 50's I cannot imagine dealing with this young, but you will, or because you are young you will likely adapt faster and better even :-) Rosemary
Posted 10/19/2011 12:04 AM (GMT 0)
Glad to hear you are doing well and had a short hospital stay. My daughter ended up spending 12 days after her surgery :(

I know what you mean about hoping more people would've visited you. Since my daughter was diagnosed with UC three years ago, I cannot tell you how many "friends" have disappeared. Some people just cannot handle these type of situations. I don't know how old you are - my daughter is 13 and her friends have no clue what she has gone through. I have a handful of friends that have been there for us, but for the most part people just can't handle hospitals. I used to be one of those people!
Posted 10/19/2011 1:01 AM (GMT 0)
I will definitely reiterate the whole convex wafer and eakin seal thing. Those were the best things in the world when I found them...saved my skin! I also highly recommend the sure seals...I didn't try them until about 15 months after I got my ileostomy and I so wish I had given them a try sooner. My confidence increased dramatically with them on!

Unfortunately, people become very weird with surgeries like this. I, too, am young, 21 (20 when I had my surgery) and had my share of the friends situation. As others have mentioned, some just don't know how to deal with it, don't know what to say, are afraid of it because they don't know what it is, and some even imagine you being a completely changed person! (very weird, i know!) I agree that maybe calling some of the friends you really want to keep around and just having a conversation with them will help. Once they hear your voice and realize your still the same person and everything is fine, they will be more likely to come around.

But I will say, you definitely will learn who your true friends are. With the surgery, I did lose some friends and even a significant other. The guy I was dating at the time said it wouldn't work out because he was too vein, immature and shallow. I give him credit for openly admitting it, but I mean, really?!

But remember, keep those who support you around you. Its great to be around people who don't care about your surgery, laugh and joke with them! Smiling always helps! Laughter is the best medicine :)

And remember, we're all here for you!
Posted 10/19/2011 12:52 PM (GMT 0)
Sarah --- his loss. Really.

Which brings up one other point that I don't think anyone has mentioned -- something like this can make you a lot closer to the people who do stick around. As shallow and inconsiderate as some people can be, it is truly amazing how kind and helpful others can be.
Posted 10/19/2011 4:57 PM (GMT 0)
jellybean i dont really know why its hard to breathe hope i didnt answer to late .... it only happens when i walk but the more i walk the better it gets seems like ITS ALL MENTAL i think :D but the pain is a mother lover i felt like i was going to die on several occasions not to scare u the nurses are quick i had a panick attach and was slidding off of my bed because i had just got done waling they put something in my iv 2 pilss and i was apoligizing for the comotion i caused lol go into sugery as if your having a colonoscopy :)it helps sooth the mind
Posted 10/19/2011 5:02 PM (GMT 0)
mustlove dogs i guess people are like that idk if you like toread but this recomndation is to everyone to t=read the book IN BETWEEN SHADES OF GRAY has nothing to do w/ our dissesbut we relate by staying strong and blueglass i have became closer tomy next door neighboor who mymom use to not like but now appreciates her and my bestfriend sady :D i <3 her with my soul :)
Posted 10/19/2011 10:58 PM (GMT 0)
blueglass- Absolutely his loss! I'm a catch ;) tehehehe

But you are absolutely right in that you become closer to those who do stick around. My best friend who is also my mentor actually couldn't wait to see my stoma...she thought it was the coolest thing in the world! Not only stoma's though...disease can bring people closer as well. I've recently started to become closer to my cousin, she's an RN, because she gives me my Humira shots bi-weekly.

You're doing great Jackie! Keep looking for the positive! And don't worry about panic attacks...they are not unusual for someone having a life altering surgery! Keep on pushing through! :)
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