how many supplies is enough?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/3/2007 2:15 PM (GMT -6)   
hey people! well, I am excited- my surgery date is November 14! Total proctocolectemy with a perm ileostomy. I met with my surgeon & an ostomy nurse yesterday, who gave me a 2 piece bag to take home- the wafer & an open-end bag. She gave me the impression that those 2 items were all I really needed to care for my ileostomy- I don't know if she just didn't want to freak me out, to tell you the truth. She was very knowledgeable & helpful. My thing is this- I read on here about inserts, paste, seals, powder.... do you all find that these are truly necessary, or ???? I'm thinking maybe some of the powder to ensure a tight fit, & a little paste as needed. Can it really be that simple?!?! My surgeon makes the stoma so that it protrudes about 2-3 centimeters, & as far as the diameter goes, he can taper it down to a fairly small opening if he feels it necessary.
diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/3/2007 3:01 PM (GMT -6)   
Eva Lou,
That's great news! I'm glad you're excited. All I use is a two piece appliance with some stomahesive paste. For me, it's really that easy! People with sensitive skin use powder and sprays, and others use seals to prevent leakage under the wafer. If you have any other questions, please ask.
:) Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/3/2007 4:14 PM (GMT -6)   
Eva Lou,

Congratulations on your upcoming surgery. Once you have the surgery, your ostomy nurse will give you "kits" that have everything you need for home care. However, these kits only have the essentials. The paste, seals, powder, and wipes are for people who have skin damage or leakage problems. You may not NEED them but they are very helpful to have on hand. When I got home 7 weeks ago, I had lots of kits to get me started. Unfortunately, I was allergic to the brand that the hospital gave me - Convatec. My skin turned red, formed small blisters and bled. This is not typical. Now, all I really need to my bag, wafer, and the insert (which prevents leakage b/c I have leakage issues).

So, here is my suggestion to you...call Convatec, Hollister, and Coloplast. Tell them you are about to have an ileostomy and you want them so send you some samples. They can send you one-piece appliances (bag only with wafer attached), two-piece appliances (bad and wafer seperate), and anything they want to give you.

(PS. Inserts are made by Convatec)

Coloplast - 1-800-533-0464
Convatec - 1-800-422-8811
Hollister - 1-800-323-4060

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/3/2007 4:20 PM (GMT -6)   
thank you SO much! I appreciate the phone #'s, because those companies do not make it easy to get in touch with them. I look them up on the internet, but that's about it. I'll be posting FREQUENTLY in the next month or so, I'm sure. All of you on here have already given me a lot of help, even though I mainly browse the posts. And a lot of mental boosting also, when it came time to actually make the decision to have surgery.

diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/3/2007 5:07 PM (GMT -6)   
i'm glad you are havign your surgery, no more being sick for you!
this is what i have at home, i have the bags and the flanges and the scissors and the paste stuff. I use those everytime. Then i also have the no sting wipes and some powder, i have used the wipes some, but never used the powder. I also have these gel tabs that you can put in the bag to make the stuff thicken up, i use those when i go out.
It really is pretty simple. Whne you first think about it, and at first you think, OMG how on earth can i do this? but after a while it's easy!

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 10/3/2007 5:30 PM (GMT -6)   
I was so lucky to have my ET nurse place my first order for me. What she set me up with, I have stuck with, not to say I haven't tried other things (which had a few disastrous consquences), but she really took time with me to figure it out. Hopefully, yours will too. Wow Eva, I commend you for your optimistic view on your surgery. I wasn't that happy about mine.....
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/3/2007 5:50 PM (GMT -6)   

yeah, I talk a good talk! Hopefully it won't all come crashing down after the surgery. eyes   For years I was totally opposed to surgery, but as time goes by, and you become sicker & sicker, & less meds work... it seems as if it's the only option left to me. And the best option, at that. I'm not "happy" about it by any means, but what can I do? I'm hoping my ET nurse hooks me up also- I really have no clue about the supplies, & I know I can expect a fair amount of leaks at first. That's what i'm freaked about- leaking in bed in the middle of the night & waking up my husband!


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/3/2007 5:56 PM (GMT -6)   
i sleep on a waterproof pad that way if there is a leak i can just grab that up and not have to chage the whole bed, thieve the ones they have on your bed at the hospital they are the best!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/3/2007 8:10 PM (GMT -6)   
When I travel or spend the night away from home, I use the green chucks. I think that is what they are called. Always pack a couple in my suitcase.

I was wondering what you all use as soap when you wash around your stoma when you are changing your appliances? I use Neutrogena soap cause a friend of mine told me that is what they recommended when she got contacts to use that soap to wash her hands with cuz it rinses clean and doesn't leave a residue. I also just use a couple of VIVA paper towels - just throw them away with the used appliance. Easy clean up.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/3/2007 8:37 PM (GMT -6)   
they told me dial, and i bought those baby washcloths, they are 99cent for four and i use them to clean up and just throw them away.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/4/2007 7:10 AM (GMT -6)   
I use dial, lever, or any of the antibacterial/deoderant soaps. They tend to wash away the oils on the skin which may prevent the appliance from sticking, and also are preventative for bacterial and fungal infections under there.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/4/2007 7:14 AM (GMT -6)   
I always use Dial. But only because I have always used this soap, even before my ostomy, so I already had it on hand.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/4/2007 7:35 AM (GMT -6)   
Yes, hopefully you'll have a great ET nurse that will work with you and find the best solutions for you and your stoma. You have no way of knowing if a certain product will work for you before your surgery, the nurse who gave you the product is just being a little optimistic, lol.

Anyway, I just wanted to say that once everyone knows what type of product works best for them, and you know how often to change your product, it's a good idea to build up to at least an extra months worth of supplies. I've had trouble in the past when my products company had a warehouse fire and I was unable to get my specific products for many weeks. Also you never know when there will be some sort of disaster which my prevent timely shipping. This is not something you want to be unable to get.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/4/2007 1:46 PM (GMT -6)   
Eva Lou,

I was also against having a bag, so I lived with being sick and trying all of the meds out there for 7 years. When the meds stopped working and I kept getting sicker and sicker, I finally agreed to have the surgery.

I feel so great now that I've never regretted it or looked back. You are probably going to feel the same way once you're through healing from the surgery. I honestly forget that I have the bag, but when I was sick, I never forgot that I had Crohn's, because it reminded me every hour!

I wish I would've known about this website before my surgery, because it would've been great to ask people what it's like to live with an ostomy. I'm glad you found Healing Well and that you're on your way to good health.

:-) Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

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