how am i suppose to be normal?

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gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 9/1/2006 10:57 AM (GMT -6)   
hi im 22 yrs old i got my illostomy in april 2006 do to my crohns being badly inflammed and since then doctors sugeons and even my stomal therapist have been telliing me how i will still be able to lead a normal life.
so far i have not seen how this works for one in my use to be normal life i wore clothes that showed my stomach now if i do that people point and stare. i also now have to sleep on towels at night incase it decides to leak on me. Also when ever i leave the house i have to take a giant bag with me full of stuff to change it if it leaks along with a spare change of clothes incase it gets on that, plastic bags to put it all in, and towels to help me clean up and a hair dryer which i find useful to get it to stick better.
 
i ask HOW IS THIS NORMAL?
 
ive tryed many different products and ive found one that can last almost 3 days sometimes how ever thats only if i put loads of tape around the edges of it to help it stay down.
i dont see how i can possibly ever have ne thing even close to a normal life ne more but they dont seem to understand that is there something there not telling that would help.
 
 

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 9/1/2006 8:55 PM (GMT -6)   
Ok, first thing you need to realise is that 'normal' is just a cycle on a washing machine. :)
 
gfkak said...
i wore clothes that showed my stomach now if i do that people point and stare
Obviously, those crop tops and low waisted jeans may not be for you anymore but then again, lots of people don't wear them anyway - it doesn't mean you're any different to thousands of other people who don't wear them and haven't had ostomy surgery. Wearing those types of clothes is a 'want' but certainly not a 'necessity' :)
 
gfkak also said...
i also now have to sleep on towels at night incase it decides to leak on me.
 
With time, will also come confidence. Once you've experimented with different brands and found one that you're comfortable with, leaks should be few and far between and you'll gain the confidence not to need the towels anymore. Visit the different manufacturers websites and get as many free samples as you can from them.
 
 
 
 
 
Most of them even have stoma nurses available so maybe ring them and talk with them about the best stuff for you to use to prevent leakages.
 
gfkak said...
Also when ever i leave the house i have to take a giant bag with me full of stuff to change it if it leaks along with a spare change of clothes incase it gets on that, plastic bags to put it all in, and towels to help me clean up and a hair dryer which i find useful to get it to stick better.
That stuff should all fit into a normal sized backpack that you can take with you. You probably don't need to take the towels - most people just take tissues, moist towlettes or something similar. Precut everything and if you use tape, precut that and stick it on to a plastic zip lock baggy so you can just peel the strips off. That prevents you having to take scissors and the roll of tape.
 
Instead of the hair dryer, try warming the wafer up with your hands for a couple of minutes. That works for a lot of people too.
 
A lot of people also just leave a spare change of clothes in their car boot to save them carting them around everywhere with them.
 
In time, you'll also think of other space saving and time saving tips.
 
Remember, you're ostomy is only new and you're still adjusting to it. Like anything, it's a learning curve, and as time goes on, you gain confidence and become used to it, it will just become routine to you and you won't even think about it until it needs emptying or changing.
 
gfkak also said...
ive tryed many different products and ive found one that can last almost 3 days sometimes how ever thats only if i put loads of tape around the edges of it to help it stay down.
 Three days is great weartime (average weartime is about 3 - 4 days) - some people get more and some people get less. Keep experimenting though. You may eventually find a brand that stays even longer and doesn't need all that tape to keep it stuck down with.
 
On the other hand, maybe your skin just doesn't like bags being stuck for three days and you may need to go on to a routine where you change your bag every couple of days to prevent leaks. This is perfectly fine and acceptable too. You have to find what works for you.
 
gfkak said...
i dont see how i can possibly ever have ne thing even close to a normal life ne more but they dont seem to understand that is there something there not telling that would help.
You most definitely can lead a 'normal' and full life. I'd had my ileostomy for 30 years now (since I was 10 years old) and there's nothing I can't do except I don't have an excuse to spend lots of time on the loo reading.
 
I've travelled the world, ridden elephants, camels, rollercoasters, been rock climbing, swim regularly in summer, etc all without a problem. I know ostomates who regularly crawl through caves, bunjee jump, scuba dive and parachute!  You will get there too!

I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


PURPLE901
Regular Member


Date Joined Oct 2005
Total Posts : 93
   Posted 9/2/2006 4:33 AM (GMT -6)   

I also just got my surgery, March 2006.  I still have bad days where I feel gross!  However I try to compare it to life before the ostomy and that wasn't so hot - definitely not "normal". 

I am still trying to find clothes that are flattering but you just have to look at it as an excuse to go shopping.  My husband and I try to find humor in it (I will however spare you some of our crude jokes).  He's just happy to have a wife that can leave the house again, even if it is with a bag of supplies and a change of clothes.  I don't know about you, but when my Crohn's was flaring I had to find bathrooms on a moments notice and carried a roll of TP in my truck "just in case".  Now I can go with him in our boat and even camping now in our trailer.

My kids have been good too, but they had seen an ostomy before because my mother in law has one.  "You have a special bag like grandma now" is all they ever really said about it and they know now not to jump on moms belly.

There is good and bad in everything and even though it is hard you have to try to concentrate on the good.  And as for normal its all relative, right?

Keep your chin up!  My mother in law says now that she would never go back even if she had the chance.  I can have the j pouch surgery but haven't decided to yet I need to take a few months to really think about it.


Crohn's Disease since 1993, colon removed March 10/2006 with possible J pouch surgery ahead.
Asthma since 1996.
Pulmonary Embollism July 2006.


wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 9/2/2006 8:17 AM (GMT -6)   

My APR surgery was 2/06 .. 6 months post op now and doing great!  Give yourself some time, it really will get better.  I keep an emergency kit in the car, have from the beginning, but have never needed it. 

Once you've found the appliance that works for you, one you feel secure with, the focus of your Life will change.  Who cares if you poop from your bottom or your stomache?  Instead of being concerned all the time about pooping and possible messes, you'll move on to more "normal" interests and concerns. 

Clothes ARE a big issue - have fun shopping!

:-)  


gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 9/2/2006 11:24 AM (GMT -6)   
thanks heaps for the tips there good ideas.
 
as for taking the towels with me i use them for when im changing it and it decides to start working keeps the mess down a little if u know what i mean.
 
i really apprieciate your help its nice to know that there is something left for me in life and that it will get better. i do miss my days b4 the opperation though pain and going to the bathroom alot i can deal with but this is going to be alot bigger step for me.
 
Also i cant wait till i dont have to sleep on towels ne more its sooo uncomfortable and annoying but there is hope yet.
thanks again

Sweet Heart
New Member


Date Joined Aug 2006
Total Posts : 2
   Posted 9/7/2006 3:27 PM (GMT -6)   

Hi gfkak,

 I have had an ileostomy for 7 years now, I have a wonderful fiance (together 3 years) and having the surgery was the best thing i ever did!!!. And at first I was lost and depressed, thinking that i would never be normal!! Well I was wrong, life does get better!! When I started healing well I started feeling amazing!! I wake up and have no pain, I can go on car rides and not have to worry about needing the bathroom as much, I go camping, and I walk all the time!! After you start feeling better you will see how great it is, not to feel sick every day!

 Out of the 7 years I have had mu ileostomy I have only had about 4 accidents with it. The supplies that I use it great and I will never have to change brands. These are the supplies that I get the Convatec supplies! I have never had many problems with Convatec and I never have to carry a big bag in case of an accident. The best thing is that I can leave them on for 5-7 days. IMPORTANT: You MUST clean you stoma area VERY good before putting on a new flange. I hope that my information has helped you, if you want to ask me anything about the Convatec supplies e-mail me at     trinav_22@hotmail.com  I am more than willing to help!   

gfkak said...
hi im 22 yrs old i got my illostomy in april 2006 do to my crohns being badly inflammed and since then doctors sugeons and even my stomal therapist have been telliing me how i will still be able to lead a normal life.
so far i have not seen how this works for one in my use to be normal life i wore clothes that showed my stomach now if i do that people point and stare. i also now have to sleep on towels at night incase it decides to leak on me. Also when ever i leave the house i have to take a giant bag with me full of stuff to change it if it leaks along with a spare change of clothes incase it gets on that, plastic bags to put it all in, and towels to help me clean up and a hair dryer which i find useful to get it to stick better.
 
i ask HOW IS THIS NORMAL?
 
ive tryed many different products and ive found one that can last almost 3 days sometimes how ever thats only if i put loads of tape around the edges of it to help it stay down.
i dont see how i can possibly ever have ne thing even close to a normal life ne more but they dont seem to understand that is there something there not telling that would help.
 
 

Wen-Nick
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 9/14/2006 6:46 PM (GMT -6)   
Hey gfkak,
 
I know what you're going through!! I'm a 24 year old female and I had to change my wardrobe up a little bit too. I was having the exact same problems you are with my stoma, but I got some help froma great ostomy nurse and I don't have any problems now. Here's what I do:
 
First I use a two piece pouch from Coloplast b/c theirs is incredibly low profile and Hollister didn't work for me. I use a convex wafer (your manufaturer will know what that is) because it prevents leaking.
Secondly, I of course cut out the opening of the middle of the wafer as close as possible to the size of my stoma, and then maybe just a hirline bigger, and I'll tell you why in a second.
After this, I place an adhesive ring around the opening on the wafer (once the bag is on, this ring will expand around your stoma, protecting your skin). Make sure the hole of the ring is slightly smaller than the hole on the wafer.
Then I smush the outer edges of the ring against the sticky part of the wafer so that it will stick real good once it's on. If it doesn't stick really good, then it gets really itchy.
Next, I place paste on top of the adhesive ring, around the opeing of the wafer - just like normal.
Then, I spray some medical spray-on adhesive on the sticky part of the wafer an smooth is around w/ my finger. I find that it stays on a day or two longer if I do this. But don't let the spray dry too long before you place it around your stoma (about 3 minutes).
Now this next part is  VERY important. One of the biggest mistakes people make is they don't allow the area around the stoma to dry enough. Your skin needs to be VERY dry. What I do is I stick a very small light tampon (the smallest I can find) inside the opening of my stoma. Make sure most of the string is cut off and you don't insert the tampon into your stoma more that 1 or 2 inches. It doesn't hurt, I promise. Lots of people do this. Your stoma may try to push the tampon out, but try to keep it in there.
Then I put my hairdryer on the cold setting and I blowdry the area around my stoma, but not too much. You don't want to dry out the actual stoma, just the skin around it.
Once the skin is dry, place the wafer around your stoma and smush down the inner part of the wafer around the stoma so the the paste spreads out onto the entire area around the stoma.
Then put the bag onto the wafer and you're good to go.
 
I know this is a whole lot to do, but I hope it helps. It's really the only thing that worked for me.

gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 10/3/2006 10:19 AM (GMT -6)   

thanks heaps for your help ive now got alot of things to try instead of feeling helpless.

its really driving me nuts but thanks heaps

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