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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/15/2009 4:13 PM (GMT -6)   
JUST got home, and I'm so lost! I changed my own bag TWICE in the hospital, but it's just *different* at home. I don't mind changing it. I HATE emptying it, but I'm hoping once I get the opaque bag that will change. I have changed the daughter's diapers for 21 months, SURELY this isn't much different. What do you use to clean it up if you drainables? I'm thinking of just using a couple baby wipes or cottonelle wipes to clean off the bottom once it's empty? I'm still pretty watery. Guess I should mention I have a sigmoid colostomy. They said the prior meds had helped my colon and so most of my colon was saved, except the sigmoid, and most of the rectum.

My incision and ostomy bag run right into each other. And my incision is pretty delicate. I have steri-strips in place, but there are still gaps, but they said that can be normal. It's sore, doesn't hurt too much and not red or anything. Anyway, the last bag I put on I got a little past crazy because I have an *inney* right now and have to get a convex wafer (It'll be here Tuesday) to pull it up. I still have stiches and they are coming out one by one. But, this last bag I put on (I'm in a one-piece clear right now from the hospital)..I think I have TAD bit of wafer either on the stitch or on the stoma. If it's on the stoma a bit, will it hurt it? I know I need to be careful pulling it off, and I usually am. I'm also worried about it because I've only passed gas through it since 10am YESTERDAY, it's been 31 hours and no bowel movement. When I changed it, it had a bit of green so I know there was poop, and it's been SO gassy... so I know it HAS to be working, but I'm worried.

This is all nervewracking. I'm not sure if I like it yet or not. I've been chewing food well, though my nurse said you don't get blockages with a colostomy, but because they really did thoroughly look through all of my intestines because of my history of inconclusive tests. And, for kicks, my path report came back inconclusive as well. My surgeon and I just kind of chuckled and he said once again, we know it's Crohn's (symptoms - fissures, fistulas, abscesses, etc.) From the path report, it sounds like I had an internal abscess forming in that section AND divertiticulitis? Really, it was time for it to go, though he was surprised at how good the rest of my colon looked, so now that it's ALL in good shape I'm going to take a dose of Asacol starting in about 2-3 weeks once I'm a little more healed.

ANy advice? The ONLY company I can order from is Sterling Medical...so I have the catalog from Edgepark which has helped. And, my insurance company DOES cover disposables, so I'll be hoping to move to those in about 2 months.

Sorry this is so long and rambling. I'm still dealing with the "farting" which is strange...especially when you are eating or just sitting there. The first time it started working, it woke me from deep sleep. Sounded like a volcano erupting and my dad was sitting there and he RAN to the nurses station and I started giggling and fell back to sleep. I can already tell my health has improved 1200000000% but I still am uneasy with it all! Thanks!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/15/2009 6:15 PM (GMT -6)   
Kaycie,

What you're going through is completely normal. I promise, it will get better.

The opaque pouches are so much better. I use ones from Coloplast that have a velcro closure, which make it easy to empty.

I clean the end with toilet paper. It helps to use two wads of TP. Use one to lay the end of the pouch on, and then wipe it clean with the other.

The consistency of the output is always watery at first, but it will thicken over time.

To keep the wafer off the incision, cut the hole to the left or right of center, so when you put it on, it shifts away from your incision.

If you use adhesive remover wipes to remove your wafer, it won't hurt. You'll also want to shave the tiny hairs where the wafer goes, so it doesn't pull them out one by one each time you remove the wafer.

Eakin Seals are great at preventing leaks when you have watery output. You put one around the hole in the wafer, and it molds around your stoma. The convex wafer will help a lot.

That's weird that you haven't had any output in 31 hours. Are you still on pain meds? They can cause constipation. Make sure you're drinking plenty of water, and let your surgeon know if it continues.

Gas-X will help with the gas.

There is an adjustment period, but soon, this will all come naturally to you. Hang in there, you are doing great! Please keep us posted on how things are going. :-)
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.


hsmom
Regular Member


Date Joined Oct 2004
Total Posts : 35
   Posted 5/15/2009 7:42 PM (GMT -6)   
I promise it will get easier to deal with changing and emptying the bag. I had close to the same type surgery. It is normal to not go every day with a colostomy. They are not as active as the illeostomies. My wafer overlaps on my incision too. It has been 2 months since my first surgery. Be sure and use the adhesive remover wipes to take off the wafer with. You can call Hollister, convatec and coloplast and they will all send you samples. That really helped me decide what ones work best for you.
I was so overwhelmed the first few weeks home. I was in the hospital for 3 and 1/2 weeks and had two emergency surgeries so it took a while to adjust to being back home.
I remember when my bag first made noise. My daughter said what was that??????? I said just some gas cause it is finally working. We were all excited about it finally working.
Glad you are feeling better.

Susie

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/15/2009 8:18 PM (GMT -6)   
Cecilia - It's a colostomy, so I know the input is slower, but now I'm nearly 36 hours and nothing but gas. I think I'll call my ostomy nurse tomorrow. I feel tender around the stoma, but that may just be the stitches. And, I *think* I might be starting my period, so that would make sense why it's not doing anything right now too...

Susie - Thanks for the tips on wipes. I haven't had too much trouble removing, just worried if I got it a little on top the stoma if it will be a problem. I've already yanked on stitch on accident, but the nurse said it was about time for them to go, so no worries.

I'm still passing gas. I've eaten foods to make me go and it was runny before.. and my thought process is if I'm passing gas, then SURELY there is stool SOMEWHERE behind that. Again, if I'm starting my period, this would all make sense I presume.

Thanks for the support. Overwhelmed is probably the perfect word for this right now..
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/15/2009 8:53 PM (GMT -6)   
honestly, once your stitches and stuff have healed, i wouldnt bother with the remover wipes. I dont use them, they just make things funny feeling to me, lol.
Good luck!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/16/2009 9:33 PM (GMT -6)   
Kaycie,

Glad to hear you are doing so well!! Hope I remember all this stuff when it's my turn.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/17/2009 8:35 AM (GMT -6)   
Tri-girl - Email me or post here.. I'll be glad to answer any questions. This has all been somewhat frightening. I *know* in my heart of hearts it will be ok...but I am still somewhat mortified by it all.

Hang in there.. when is surgery? Do you even have a date? I'm 11 days out...and as far as my disease? I feel AWESOME.. but it's the surgery, the incision, and trying to figure out what appliance I like the best that is all bugging me. I started crying this morning, but I struggle with anxiety and depression (from my history - Crohn's and infertility and losing my daughter after birth)..so I need to call my family doc..get in to see her and get on some meds..then I may not be so upset about some of the silly stuff. I swear, if I ask my husband to bend over and smell my bag one more time (to make sure it isn't leaking)..he might just leave me! LOL! (kidding, he's been pretty awesome about this all..let's me go into our bedroom alone and change it, but will bring me anything I need right now - with several disgruntlements along the way).
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/17/2009 10:21 AM (GMT -6)   
Kaycie-here is a great way to check for smell. Leave your pants off, get in your bed, pull the blanket up over you ALL the way, then curl down as far as you can towards your tummy, i know this close out from surgery you cant do that very much but as you get farther away its reallly helpful! And f there is a smell, you will catch it that way!
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