what system works best for u?

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/2/2008 6:47 AM (GMT -7)   
I know its saturday and the boards are usually slow but I'm going home from the hospital today and I know nothing about systems besides what iv read. The nurses here seem very uninformed. So my plan is to go home and get online so I can call some companies and request samples. I was wondering:

What system works best for you?

When u call to order samples do u ask for a specific amount?

Do u get samples of accessories such as gas treatments or odor reducers?

Has anyone tried the convatec adhesive two piece appliances that stick instead of snap?

How long should it take to get them?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/2/2008 8:07 AM (GMT -7)   
Hey, that's great news that you're going home today!! yeah You must be excited to get out of there. I use a two piece system from Coloplast. The wafer is Assura Extended Wear, and I get a week's use out of it, which is good for an ostomate.

I prefer the two piece, so I can see what I'm doing when I put the wafer on, since the pouch is not attached to it. I can also snap on a fresh pouch halfway through the week, if I want. There's also a device that locks it on, because you definitely don't want it to pop off unexpectedly!! tongue

I apply an Eakin seal or Stomahesive paste around the hole of the wafer to protect the skin around my stoma from getting any stuff on it.

As a deodorizer, I use a capful of mouthwash or hydrogen peroxide. They both work great. Some people put tic tacs in their pouches. I haven't tried that yet, but they say it works, too.

When it comes to ordering samples, you can do a Google search to find the different companies. Then, give them a call or email them, and they'll ship out some samples to you. They'll arrive within a couple of days. I'm so glad that you're stoma started working quickly and that you're doing well enough to go home. :-)
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/2/2008 8:45 AM (GMT -7)   
That's great that you are going home! You will feel so much better recuperating at home (I hate hospital food)

I use the same system as Cecilia and am very comfortable with it as well (I was able to get mini enclosed bags for swimming/intimacy and I just pop one on and when I need a bigger bag, change the bag). I also use peroxide for odor, but only if I'm going out in public.

I went to Coloplast and Hollister and requested samples of both one piece and two piece appliances longer and shorter bags. Other things that you might want to request that you will need:

paste
adhesive remover wipes
stomahesive powder
barrier wipes/spray
eakin seals

Sometimes at J-pouch.org people will post to give away supplies because they no longer need them. Most are willing to ship to your house for you. My supplier is Edgepark and you can call your insurance company to find out which supplier you should go through to order supplies.

All of these things were done for me through the hospital and it really irritates me that they are putting you out there without any help! I would surely send a letter to the hospital administrator and let them know that this should be done for ostomy/urostomy/wound care patients. At least you have this forum with seasoned veterans that can help you and we are all more than happy to help with any questions that you may have, there are no stupid questions here!

Welcome home, get your rest, enjoy home cooked food, drink plenty, and don't be afraid to ask for help if you need it!

Theresa
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 2/2/2008 9:00 AM (GMT -7)   
Praying,

I like many different products. I can only wear Hollister New Image because my skin is allergic to both ConvaTec and Coloplast (my skin becomes red, rashy, itchy, and bleeds).

Coloplast Assura 2pc - is nice, soft, and discreat. They use a locking system which as a reputation for working well. However, I stick and unstick my bag a lot so I ended up breaking the system several times. I tried Coloplast on three seperate occations to make sure it was not working for me.

ConvaTec Durahesive Moldables 2pc - This is an awesome system and would be my first choice for a newbie. You do not have to cut this wafer. You simply stretch the wafer hole with your fingers and then place it around your stoma. Then the wafer will contour to your stoma and prevent leaks.

Hollister New Image 2pc - I really like this sytem because it gives me the most options. Hollister makes an assortment of different sized bags. I wear their mini bag during the day which is very small but not too small. I wear their long (regular) size bag at night when I sleep, and I put a cap on when my hubby and I want to spend some time together. I never have to remove my wafer. I just stick and unstick my bags. I usually rinse my night time bag and then hang it up in the shower to dry. Then, the next night I put it back on. I use about 2 regular bags a week and I use one mini bag a day. The mini bags come in a box of 60 so they last me 2 months.

I would definitely order No Sting Spray, Powder, and Hollister Paste, Eakin Seals. The seals go under your wafer and prevent leaks. The No Sting Spray and Powder and for irritated skin. Your skin is not use to having adhesive stuck to itself all day and night and will probably become irritated. Also, my skin developed a yeast infection from the heat and mosture. My dr ordered me some nystain powder which I now use every time I change my wafer. I apply a light layer of power and then spray the No Sting spray on top because a wafer will NOT stick to powder. This works great for me. As for the smell, I honestly do not have an odor and if I do, it is very faint. I am not sure why, but I am gald! So, I never use anything.

Oh yeah, you need adhesive remover to clean your skin once you remove the old system and apply the new system.

Happy Shopping!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/2/2008 11:25 AM (GMT -7)   
Great News!!! Glad to hear that you are on your way home already. You will probably be pretty tired the first couple of days just from using extra energy being at home. Don't overdo it. Most importantly, please, please be sure that you are drinking lots of fluids. How's the stoma output now?

I use Convatec products -- 2 pc Surfit Flexible wafer and 12" opaque bags (I just fold them up inside my panty and then I have the extra space when needed at night, and if not needed, it stays folded.) I also use the Eakin Seals now and wouldn't be without them. Definitely use adhesive remover wipes so skin isn't so traumatized when changing wafers. I also have to use a convex insert ring inside of the flange of the wafer --- you probably don't need that tho. I have used this Convatec system since I was released from the hospital in 1984!! I too prefer the 2 pc systems so that I can better see when applying the wafer around the stoma. The bag can be hard to attach if your abdomen is still tender. (saw advice on here to use liquid soap around where the bag snaps on - great idea!)

Amey recommended the Convatec Durahesive Wafer since it does not require cutting or the paste or even the Eakin Seal most likely -- it "turtlenecks" around the stoma automatically. Great system but it is a little costly. Might be worth requesting samples tho til you feel more confident changing your bag/wafer. It really cuts out some time during the changing process.

One of the best times to change is first thing in the morning right out of bed before the stoma becomes active. That is my preference. I prepare my stuff the night before so I don't have to cut my wafer while I am still half asleep!!!

One other tidbit - IMO only... everyone is different in their changing process. I personally use VIVA paper towels to clean around the stoma. One to soap up, one to rinse off, and one to dry well -- they don't shred and you can just pitch them. Some folks just use wash cloths, towels; some use those gauze pads... After 23 years, I still prefer just a good soft heavy paper towel that I can pitch. One roll lasts a long time too and it is very reasonable. I also use Neutrogena unscented bar soap to wash with because it does not leave any type of film on your skin.

Again, these are only my recommendations.. you may already have your own system in place; others may have a better idea. Just throwing the ideas out there for you.

You are doing so well -- please feel free to ask any question you may have. We are here to support you in your recovery.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

Post Edited (peggy113) : 2/2/2008 11:28:43 AM (GMT-7)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/2/2008 1:44 PM (GMT -7)   
U guys are so awesome thanks soo much for all of the suggestions. I'm going to print this out so I can remember exactly what 2 ask 4. I guess I have 2 call the insurance company 2 find out what they cover.
Thanks peggy,
Yes I made it home and I was going 2 ask about output. I changed my bag b4 I left the hospital at around noon. Its now 330 and iv had gas but no output really. Just like little trickles of liquid. Is this normal or should I b worried? Also this since this morning iv been having a feeling of an upset stomach almost like I'm gassy. How long does this last?
Iv read about those moldables they sound awesome! I will request those samples for sure. As far as the soap, thanks I wasn't sure how to know what soaps leave residues and which ones dont.
This stomach upset is really getting to me. Its rather uncomfortable. :o/
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/2/2008 4:19 PM (GMT -7)   
Do you have any Gas-X you can take? It helps make the gas pain go away.

When you call your insurance company, ask them if they have a contract with any of the ostomy suppliers. I found out that Aetna has a contract with Sterling Medical, and all of my supplies are 100% covered.

Do you have any family members who can stay with you for a couple of days? It helps to have someone there to bring you something to drink and cook some food for you until you get your energy back. :-)

Take care,
Cecilia

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/2/2008 9:50 PM (GMT -7)   
have you been drinking enough? if you havent' that could be causing your slowdown in output.
My ET told me that plain Dial was the best to wash with. I was using Ivory, because it says 99.4 percent pure, i thought it would be best, but she said it had lanolin in it, and not to use soaps with lanolin in them.
To clean up around my stoma and stuff when i change, i buy these really cheap bath towels from wal-mart, they are like 1.84 a piece or something, then i cut them into small squares, i get enough for probably 6 or 7 changes from one towel, and i just toss the little pieces. But i can see that papertowels would work, i never thought to try that!
Order some gel-x tabs, they are really good for when you go out. And be sure you keep gas-x on hand at home.
I am glad you got home, and i hope you do well!

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/2/2008 10:21 PM (GMT -7)   
Praying,
Remember to eat low residue foods and chew your food really well, are you eating enough? I too had sharp pains on my sides for the first week after I got home, couldn't sleep on either side, had to sleep on my back but the pains go away. Try to get up and walk throughout the day to keep the gas pains at bay.

When I change my appliance I take everything off and jump in the shower and soap up and rise well, I love the feeling of the shower on my skin. I was told that you can eat a couple small marshmallows and that will slow things down. I keep paper towels nearby at all times and have never had an explosive mess while putting on a new appliance, just make sure that your skin is dry.

I know you'll recover so much faster now that you're home and don't worry about things around the house, the more help you can get the better, don't be afraid to ask friends and family. You need your rest.

Welcome Home!
Theresa
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/3/2008 11:40 AM (GMT -7)   
hey  u guys thanks for the replies...
 
I can already see that drinking enough is going to be a problem for me. I never really did drink alot, and i'm terrible with water no matter how hard i try. I can babysit one 12 oz bottle of water for an entire day i just can't get it down. I have been trying to keep up with the fruit juices but i still can't drink alot of them.
 
As far as my output, right after i typed that post it started putting out. HOWEVER, i feel EVERYTHING that is coming out, and its somewhat thick (sorry if that is too graphic) but i literally feel it in my stomach, like a strong stomach upset and then i feel it come out. Its really uncomfortable, and it shows on my face. My mom keeps asking if i'm ok. I got so uncomfortable last night that i started crying, not because it hurts but it just doesnt feel nice and it was constant, it makes me not want to eat. Is this how it will always feel? if so I dont think i can deal with it.
 
With the smell, ur right Ash i do only smell it when i empty, and my mom has an extra sensitive nose and i just ask her if she smells me, she said she hasnt yet. I hope she's not saying that to spare my feelings. The thing is, when i empty, i can't tolerate the smell. I find myself gagging and feeling like i'm about to vomit. Then of course i get so frustrated that i start to cry because of that. I find myself doing alot of short spout crying lately. Especially because I know it hurts my mom b/c there's nothing she can do for me and i don't want to stress her anymore than she already is...
 
It helps to have u guys here to listen and vent to. Even when i try to explain it to my mom she doesnt get it and i understand. I meet with the nurse tomorrow....thanks again
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/3/2008 9:59 PM (GMT -7)   
you will get used to the smell, it grossed me out at first too, but once you start eating more regulary, the smell will not be the same. Pineapple and peaches make it smell much better, they come out smelling like they went in!
A good way to check for smell is to get in the bed, clothes off, curl up in the fetal position and pull the blanket up over your head. I don't really suggest doing that right now, wait until you have healed a little, but it is really easy to tell that way! unless you have a hole though, you should not ever smell anything.
If you keep getting grossed out about it, just work in a restuant for a week or so, nothing will ever gross you out again, LOL!
You also may want to try spraying some air freshner in the room before you empty, or putting some mouthwash IN the toilet, i know that sounds weird, but when you sit down you will smell that.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/4/2008 2:55 AM (GMT -7)   
Praying,

You're still post-op, so you're going to have some pain while your body is in an adjustment period. It takes 6 weeks to fully recover from surgery, so try to stay relaxed while your body heals. Please don't feel like you have to put on a good face for your mom. If you're in pain, it's okay to show it. Did they send you home with any pain meds? Take them if you're hurting and Gas-X, too, if you have gas pain.

There must be something that you like to drink. If you don't like plain water, try adding something to it, like iced tea or lemonade mix. Drinking fluids will help loosen the output, and then you won't feel it coming out. Coffee in the morning will really help loosen things up!

You have to put something in your pouch each time to you empty to deodorize it. A little bit of mouthwash or hydrogen peroxide work great! Ask your mom to pick some up for you at the grocery store.

Hang in there, you're doing great!! :-)

Cecilia

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 2/4/2008 9:53 AM (GMT -7)   

Hey there - YAY for being home!

When I first got home, I felt much the same way you do. I had HORRIBLE pains, like gas. One time I even had my Dad drive me halfway to the hospital, but then it passed so we turned around. But that really does get better. I haven't had pain like that in twow months, at least. And Maximum strentgh GAS-X did help, so definitely try that. It's easier to bear I think, if you know that this isn't a permanent side effect of an ostomy. It's just a part of healing from the surgery. Same with feeling everything that passes. In the beginning, I was hypersensitive to it. Now, I don't usually feel anything at all. Sometimes, if the output is super thick, or if I've been eating oranges (LOL), then I can feel it passing. but it's never more than slightly uncomfortable. Usually it's just like, hey, I can feel that!

AS for smell, that , too, is worse in the beginning. I used to have to try to change and empty while holding a towel over my nose, otherwise, I'd gag. I got a tip on here to use Hydrogen peroxide in the bag, and that helped a lot. But now, I'm so used to it, that I don't even bother with that. I use a spray freshner if I'm in someone else's bathroom, but that's about it. And Summer is right about the covers thing - that's a good way to check. I caught a small leak that way, 'cause I smelled a little something, and I knew that was off!

You're still doing really great!


UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!

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