worst case scenario?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 4/5/2008 1:34 PM (GMT -6)   
hi everyone- with surgery approaching, I'm getting a little freaked out. Not much, but... right now, the main thing I'm worried about is skin irritation- is it really such a problem? And yeast infections? I'd like to think that if you cut the wafer right, & only change your appliance when it really needs it, like 2-3x a week, it shouldn't be an issue. And do you really need all the powders, pastes, & seals & such? It's funny- I recently went thru a period of thinking "Maybe I ought to try a jpouch...", but after rethinking my options & spending a fair amount of time on the jpouch board, I'm once again opting for a perm ileo. So now, I'm trying to think worst case scenario with a perm ileo- I heard about some major issues from people on the jpouch board (skin irritaion, leaking, allergies to appliances), but all of you who post here seem relatively happy with your ileo's. What exactly is the worst-case scenario with a perm ileo? I'm thinking that once you get a handle on the external stuff, it's a walk in the park... am I deluding myself? I hope not!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/5/2008 2:46 PM (GMT -6)   

Eva Lou

Don't get freaked out!!  I am currently learning how to live with my new permanent ileostomy (after having a loop ileo for more than 6 years) and it is no big deal.  This time around mine is a much different shape so my products have changed and your ET nurse will set you up with the products you need FOR YOU.  Everyone is a little different with products, but one that I would STRONGLY suggest is to try the Eakin brand seals.  They are much better than paste (and does the same thing) and makes fitting to certain flanges a piece of cake!  Not everyone has to cut their wafer to size, it will just depend on YOUR stoma, as well as how long you can go between changes.  The climate where you live as well as how active you are will play a part as to how often you'll need to change your appliance.  You can change it 1-2 times a week in the beginning and figure out how well yours last and maybe go once a week.  Many people on this forum are lucky enough to do once a week and during the cooler months, I go 5 days, but in the warmer months, when I am outside and really active, I have had to change every 3 days.

Like with anything in life, there are learning curves, but I think that is the hardest thing when learning to deal with an ileo.  You can't let any of it get you worried...for me it was the BEST thing I ever did.  I got my life back, not only for me, but for my husband and daughter!  I wish I had done it sooner tongue

OHIO76


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/5/2008 6:32 PM (GMT -6)   
evalou this is the most important thing, try really hard to remain calm! i know it sounds impossible, i was freaking out when it came nearer to my surgery too.
anyway, i change my bag on thursday and Sunday, sometimes i go from thursday to wednesday though. I don't use those powders, or the skin prep. I do use hte paste, you may have seen my stories, lol. It's not hard at all to change the bag, when i don't mess up the paste, it only takes me about five minutes to change the whole thing. I am not sure howmuch irriation other people get, i tend to get the itichies at the bottom of my flange, where the band-aid part is.
At first it's kind of hard to get used to doing it, but after a while it becomes second nature, you can empty it really fast also. If i have a water bottle to rinse it with i can empty it and have it clean in about two minutes. so, really it's alot easier than you might think it is.

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 4/5/2008 7:12 PM (GMT -6)   
Don't worry about "what ifs" most people who post on the boards have problems, but once they find the right appliances, you don't hear anything.

Your ostomy nurse will be the one who should fit you with the right set and answer any and all questions that you may have. You can ask for a sample and try it with your favorite jeans and see where you are more comfortable with placing your stoma. You can also contact suppliers and ask for samples. Everyone is different as to what brand and skin preps they use, I use the ostomy powder on my skin and paste on my flange and usually change every 3 days, but I have a temporary loop ostomy. When I had a temporary end ileostomy I could go 5-6 days and that's the type of ostomy created for those with a permanent ileostomy. I tried using the barrier wipes, but it stung when I put it on so I quit and I've never had skin problems.

In the beginning it was a little overwhelming for me (mine was emergency surgery) but you really do get used to it all and it's not that big of a deal now. It doesn't take me any longer to empty my bag than it does for someone to pee. And when I change wafers it only adds about 5 minutes to my routine.

Good luck with your upcoming surgery and healthier new life!
Theresa

Originally diagnosed with CD in 1991
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008--3rd step -April 2008


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/5/2008 7:53 PM (GMT -6)   
Eva Lou,

Tbra is right -- most, not all, of the folks posting here have or are still having some complications with their current pouching system, still trying to find that one that fits them the best, so they are here asking questions and learning.

I've had my ileo for soon to be 24 years and I have just recently switched from a paste to the Eakin Seals to use with my wafer. I have been pretty lucky. With the Eakin Seals, I get 7 days wear time out of it, usually year round.

When I get the itchies, I know that it is time to change the wafer. Sometimes, especially if it is like the night before my "morning" change, I rinse my pouch out really well with cool water making sure to rinse well around the stoma, and that usually calms the "itchies" til morning. That is the only skin issue I have, and that is just my warning to get it changed.

Try not to get too nervous about this decision. You will be fine. After all, you have quite a few experienced veterans here on this forum that can help you out. And if we cannot, we certainly let you know when you should seek help from an ostomy nurse (ET - enterostomal therapy nurse). Please ask any and ALL questions you may have.

I wish you the best and know that the folks here on this forum are incredibly helpful and compassionate.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 4/6/2008 5:12 AM (GMT -6)   
you guys are the best at easing one's mind... I read these horror stories (not on this fru,, though) about terribly painful skin problems, never-ending yeast infections, allergies to just about everything. Those Eakin seals sound pretty cool- I am definitely going to ask the stoma nurses about them. I go for pre-ops & to be marked for the stoma site in a few weeks- the nurses last time were very informative, & now I have more questions for them! As always, thank you all!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 

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