how do you know when to change your appliance?

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moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/1/2009 1:41 PM (GMT -6)   
Hi everyone.  My surgery was on 2/19 and I came home from the hospital on  Tuesday, 2/24.  The surgeon did an open procedure, so I have a nice vertical scar from my belly to below blush .  I didn't take paiin meds all day yesterday, but may try some plain tylenol today.  My pain is mainly in my rear.  As I adjust to the new me, I keep reminding myself that I no longer have UC, and that I WILL heal from the surgery, where the UC would have progressively gotten worse and worse.  The surgeon said the right side of my colon was in the worst shape, which surprised me because my pain was always on the left side.
 
My question is, how do you know what your schedule is to change the appliance?  The nurse changed mine on Monday, and then I changed it again on Thursday.  I was going to wait and change it tomorrow, but for no other reason than the literature says to change things every three to five days.  So, besides having a leak or some other disaster, how do you decide when to change?  Also, how big of a pouch do you wear? The pouches that were ordered for me fit in my underwear, and are smaller than the one used in the hospital.  It seems like I have to empty it a lot, but if I had a larger pouch I think the weight of more .....mmm..... stuff would cause me to want to empty it just as often.  Yesterday I just wanted to take the whole thing off just for a break,  Does anyone else ever feel that way? Thanks.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs. prednisone, 20mgs and tapering every ten days
51 years young


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 3/1/2009 6:55 PM (GMT -6)   
I change when it itches. I'm not that organised that I remember to change on a specific day, although a lot of people do. It's entirely up to you. You will soon settle into a routine that suits you. I can go 6 - 7 days before changing, the 3 - 5 day thing isn't a hard and fast rule. Some people get more weartime, some get less. You'll soon work out what's best for you.

In time, your gut will settle down and you won't have to empty quite so much. Output is usually prolific at first but it will get better :)
I have had an ileostomy for 33 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 3/1/2009 7:03 PM (GMT -6)   
H!  Happy to hear your surgery is behind you.  It sounds like you are adjusting really well!  I change mine usually every 5 or 6 days...if I am lucky enough to get that much wear out of it before I sprout a leak...when I feel that "certain" itch, I know I have a leak and have to change sooner rather than later.  You will soon fall into a schedule that works best for you.  Everyone is different.  Good luck and be good to yourself while u r healing!!!.....Cheryl
Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
 Reversal surgery scheduled for March 9/09


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/1/2009 11:23 PM (GMT -6)   
I usually change mine on thursday and sunday, i got into that routine when i was working and i worked friday through sunday. And you should never change on a day when you have to go somewhere like work or on along trip if you can help it. Gives you a chance to have a leak if you are gonna have one,lol.
And i just stuck to that after i quit working caue it was doing good for me..
A good way to know if you are changing it too soon is if when you take it off it is hard to pull off. If its time it will pull of pretty easily.
Also you should change it if it starts to peel up at the edges.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/2/2009 8:40 AM (GMT -6)   
I wait for the "itchies" usually, unless I have a trip planned and want to be worry free during it, like flying, etc. I do watch the calendar to try to remember to be thinking about it around day #5 - I can go 7 days usually.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


NEsailor
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 3/2/2009 9:14 AM (GMT -6)   
You all get how many days on your appliance?! I was happy to be at five today (started using convex inserts a couple of weeks ago) after months of three days maximum. Used to be five or more. Times change, or products change?

I'd been thinking about this as a separate post anyway, but what products are you using? I use Stomahesive flange and drainable pouch, two piece system. I'd tried the Durahesive (before the insert which might help) and they either fell off (almost but NOT cool!) or ripped skin when I tried to remove them.

Thanks for all. I've had the ileo for almost half my life now but am just finding these forums. Go figure!

NEsailor
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 3/2/2009 9:20 AM (GMT -6)   
more glory days,

Sorry, this isn't JUST all about me! smilewinkgrin

Hang in there. The post surgical process is one of discovery, aggravation and relief for many. You may find that you had no idea how sick you really were as you start to feel better. One of the best bits of advice I got from my GI guy (the surgeon I will always love and he's taken care of other family. He's wonderful!) - your whole system will be healing for a long time. You might get to a stage where you think you are over it and be off someplace - he used the grocery store as an example - and all of a sudden you are just exhausted. His advice was not to fight it, walk a way from the cart, go home! I only had it happen once but I was so grateful he had suggested it could happen. I did exactly that and took care of myself. Many of us (guilty!!!!!!) are not good at doing that. Allow for what you need, be willing to ask for help (I'm terrible at that, too). Heal and go on in the world!

moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/2/2009 10:10 AM (GMT -6)   
Thank you, all, for your words of wisdom and caring. Once I go back to work, I will have to change my appliance on a work day unless I can get a full week out of one change. Summer, the thought of leaking at work is daunting! Shaz, it is reassuring to know that things will settle and output will be less, as I feel like I spend my days eating and emptying and was beginning to wonder how that is going to work with work, too. Sailor, I do have to remember that this was a MAJOR surgery, and give my body time to heal. I so much want to be healed that it is easy to become impatient. I spent so many weeks at home before my surgery with a flare up that I feel like I have been a prisoner in my house forever. This forum has definitely helped me keep my sanity. I am glad you have joined.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs. prednisone, 20mgs and tapering every ten days
51 years young


NEsailor
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 3/2/2009 2:42 PM (GMT -6)   
Once you get the hang of it, and after your body has calmed down, it's usually nothing more than something you keep track of. I know lots of people change in the afternoon. I do mine mornings before work. Peel it off, shower, get it all dry and right back on. I don't think I allow ten minutes extra now. Some days, yes, it does fight me, ( shocked ) but not most of the time!

Do continue to cut yourself slack, trust me!!!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/2/2009 3:50 PM (GMT -6)   

moreglorydays--I have the same schedule as summerstorm...I'm usually Wed/Thurs or Sat/Sun.  I used to work a Mon-Fri job and did have to change on a work day.  I just allotted a little extra time for it so I didn't stress over it.  I find that I cannot change right when I wake up, but if I give myself a half hour...usually make kid's lunch and feed dogs...I can change it without any activity.  You'll figure your body out pretty quickly shocked    I have gone longer with my wear time, but I get too self conscious...my ET Nurse/Surgeon are always IMPRESSED with the skin around my stoma and compliment me on my care, so I must be doing something right!!!  I just get a little jealous at those with more wear time devil

I use a 10" pouch which works pretty good for me...lazy...and have used smaller ones, it just means paying more attention.  I don't always tuck the end in, it depends on what I am wearing, and I have used Spanx when I want to wear something more form fitting.  I have to say, I have NEVER wanted to take it all off!!!  Oh, before I forget, do you use Imodium?  That will help when you go back to work...less emptying.

NEsailor--welcome to the forum!!

Post Edited (OHIO76) : 3/2/2009 3:02:28 PM (GMT-7)


moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/3/2009 5:20 PM (GMT -6)   
Ohio, I haven't used Imodium. Do you take it in the morning before leaving for work, or before lunch? Are there potential problems with using it to slow things down? Right now it seems like when I eat lunch my stoma decides to become very noisy. I am imagining sitting in the faculty room at a table with four other people and having these noises spew forth. Would taking something like beano or gas x help this? Thanks for any advice you or anyone else can give. I know I must seem neurotic, but this is all so new, different, and life changing. I just want to get to the new nornal with the least amount of trauma as possible.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs. prednisone, 20mgs and tapering every ten days
51 years young


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/3/2009 5:44 PM (GMT -6)   
i use immodium when i dont want to have to empty a lot, like for example when we went to the beach last week i took two abotu 30 minutes before we left, then 2 more like 3 or 4 hours later. BUT if you do that and you dont keep taking it, its gonna come out when the meds wear off, lol. I dont take it all the time to slow my output like some people do.
I do usually take 2 gasx right before i leave the house.
And that helps keep me fromgetting gas.
You may be getting noisy at lunch if you are letting yourself get hungry. If you start to feel hungry, just grab a quick bite, even a few crackers, because if you let your tummy get empty when you do eat it will be gassy.
Boy that was rambly, lol.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/6/2009 5:54 AM (GMT -6)   
I know it's time to change the wafer when I start to get the itchies or the edge of the wafer starts to peel away from my skin. Most of the time, I can go a week, but sometimes it's sooner. As soon as I change the wafer, the itchies go away.
 
I like to lay out my supplies and cut the hole in the wafer before removing the old one. Once everything is ready, I remove the wafer with an adhesive remover wipe and take a shower to clean the skin around the stoma. I use Dove soap for sensitive skin.
 
Once I'm out of the shower, I towel dry the skin around the stoma, put some Calmoseptine Oinment on the skin closest to the stoma, put the Stomahesive paste around the hole in the wafer and apply it to my skin, pressing down for a minute or so to make sure I get a good seal.
 
I use the Coloplast Assura Extended Wear Wafer (item #2833) with a cloth covered pouch (item #13986). It's a two piece appliance. Since I usually get 7 days wear time with the wafer, I will snap on a new pouch halfway through the week, when the velcro closure shows some wear.
 
I also keep a cosmetic bag with my supplies handy, so I'm ready in case I ever need it when I'm away from home. I've had an ileostomy for over 3 years and have never had a leak, so I've never had to use the emergency kit. *knock on wood*
 
Sorry this was so long and detailed, but since you're new to all of this, I wanted to share what has worked so well for me over the years. Also, mint Listerine type mouthwash is an inexpensive and effective pouch deodorizer. :-)
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/6/2009 10:27 AM (GMT -6)   

Cecilia, thanks for your detailed answer.  My past two changes have been five days apart.  My skin looks like it is holding up OK.  You mentioned an ointment that you put on the skin around the stoma.  I have not heard of this ointment before.  The rest of your routine is almost identical to my routine, except that I have been washing the area with hot water and a washcloth only.  I haven't been using soap, mainly because I am concerned about leaving a residue on the skin.  I am using Hollister New Image products, a two piece system, as these were what were ordered for me by the ET nurse.  So far they have worked fine for me,  knock on wood.

Summer, I bought some Gas -x, but haven't tried using it, yet.  When you use Immodium, do you feel bloated?  When it wears off, do you have a surge of output? 

Thanks, again.


scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs.10 mgs. prednisone, 20mgs and tapering every ten days
51 years young


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/6/2009 4:44 PM (GMT -6)   
You're welcome. Calmoseptine Ointment protects the skin in case stuff gets on it. You can read more about it at www.calmoseptineointment.com

P.S. I have never felt bloated from Imodium and do not get a surge when it wears off. :-)



Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/7/2009 10:49 AM (GMT -6)   
i dont feel bloated when i use it.
But i do get alot of output when i let it wear off. Some people use it just to slow their output, but i use it to pretty much stop mine.
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