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incision so close to bag is causing problems!

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Posted 1/13/2008 10:50 PM (GMT 0)
my doc left me with an open incision (to decrease risk of infection i guess) so it's pretty wide and getting wider the more pregnant i get. problem is, there is so little 'real estate' between my incision and my stoma that we have to cut a chunk of the adhesive on my bag off so that it doesn't cover my wound. does this make sense? i keep having leaks on that side that are starting to seep into my wound (even though it's covered in gauze and a A&D pad. i've tried the hollister seals but not other brands bags yet (waiting for my samples from other companies to come). anyone have this happen after surgery? it may be one of those things that doesn't solve itself until my wound is healed... also, has anyone had surgery where they left the wound open? i'm going to have a huuuuuge scar rather than most people who have the line down their middle. hardly seems fair. just looking for some comraderie on that one i guess and to know if it gets a little narrower over time? okay, thanks guys!
Posted 1/14/2008 12:21 AM (GMT 0)
Have you tried the Eakin Seal yet? Are you familiar with that? Let me know and I can explain....
Posted 1/14/2008 1:08 AM (GMT 0)
Headphones,

My incision was not left open after my surgery, but I still had leakage problems when my wafer was placed over the incision area. The more I tried to cut my wafer, the more I leaked. Living with an ostomy was pretty tough for a while because I was changing my bag every 8 hours and every time you remove a wafer, you remove a layer of skin. After a while, the skin becomes very irritated and sore. The ONLY thing that helped me was using an Eakin Seal. This seal goes under your wafer and around your stoma. Using an Eakin allowed me to go 2-3 days between changes and gave my incision time to heal. After about a month and once my incision was healed, I was able to get a week out of my wafers.

I hope this helps. I am so sorry you are having to experience this frustration. Is DOES get better.
Posted 1/14/2008 1:42 AM (GMT 0)

Well said, Amey!!! 

I too was having some issues with my wear time.  I was at 5-6 days, then all of a sudden, dropped to 3-4 days.  With the Eakin Seal, I am back to 7 and changing it then, even without the "itchies"!!  They are WONDERFUL!!!

Posted 1/14/2008 1:47 AM (GMT 0)
Headphones,
I'm sorry you're having leaks. sad I had the exact same problem after surgery, too, and here's what worked for me... instead of cutting the hole for the stoma in the center of the wafer, I took the guide and moved it up and to the left, which shifted it over a few centimenters away from my incision. The wafer stayed on so much better and the leaks stopped. I hope this little trick works for you, too!! :-)
Posted 1/14/2008 1:51 AM (GMT 0)
Great idea, Cecilia!
Posted 1/14/2008 3:07 AM (GMT 0)
Hey Headphones,

My surgeon left my wound open as well but i didnt really have anyproblems with leakage but my wound is nearly healed over and it has definately got a lot smaller than when I first had the it done.

Luke

Posted 1/15/2008 4:50 AM (GMT 0)
thanks so much to everyone. i've put in a call to sample the eakin seals, haven't got them but tried the hollister kind which didn't help too much. my skin is killing me, so irritated and has folliculitis or whatever it's called. i did try cutting the hole over further with the cut to fit, that gives me a little more adhesive, but not enough to keep a seal for long. i'm really hoping these eakin seals help me as much as they've helped several of you.

ash- i started crying reading your response. i'm so sorry for what you've been through, you are right it's all about perspective. i'm so lucky to be alive and for my baby to have made it through all of this apparently unharmed. now that i'm starting to feel a little better, i am trying to enjoy this time and not be too concerned with the vanity aspect of this new ileostomy. i'm really not concerned about the looks of the scar, i don't plan on putting on a bikini any time soon with this bag on my belly. it's more the issue of causing me a headache getting a seal, plus i had a horribly painful experience with a wound vac if you know what that is (long story). do you have UC or Crohn's or something else? do you think you will try again to have a baby or did you have any before? i understand if you'd rather not talk about it, it's just nice to talk to someone who's been through a similar experience. my surgeon told me that there is only 5 documented cases of emergency ileo surgery during pregnancy. i'm sure there are more, they just aren't documented, but it's obviously not too common. anyway, thanks for the encouragement and tips on dealing with the incision- really appreciate it.
Posted 1/15/2008 5:34 AM (GMT 0)
ash~ thank you so much for sharing. i'm sorry but i don't know what CC stands for? your story is incredible and you are such a strong person to come through all of this and be able to look to the future with such a good attitude. i've read several of your posts and you are so sweet and helpful to everyone. i hope all your wedding planning is going well, it sounds like you have an incredible fiance. having that support makes all the difference. i've been married for 4 years and although my husband and i have always had a wonderful relationship, going through all that we have the last couple months has brought us that much closer and i don't know what i would've done without him, especially because my dad died while i was in the hospital dealing with all of this. i was in the hospital for about a month and a half, but spread out over 4 visits. i kept getting dehydrated and couldn't eat and would throw up a lot whenever they sent me home so i kept having to be re-admitted. i was on the wound vac at the hospital for a bit, but more so at home. home health would come to change the sponge 3 times a week. one day i decided to take out the sponge myself to shower before they came, which they told me was no problem. for some reason on that day, the sponge stuck to my wound like it had been superglued. i had to tear it off a tiny bit at a time while it was bleeding down my legs. i tried waterlogging it in the shower, but it didn't work. i almost blacked out so many times and it took almost 2 hours to get it out. the only thing that made me keep tearing it out was that i knew if i didn't do it, the home health nurse would have to. i decided after that not to continue with the wound vac!
that is horrible that you got bad advice from doctors, it seems sometimes we know what's best for our bodies. i basically told my doctors to go ahead with the surgery because i knew that i had perforated. they were deliberating because of the risk, but i felt like i was going to die from toxic megacolon if they waited too long. my brother had perforated a year before so i was fully aware of the risk.
have you considered the j-pouch/ reattachment surgery or do you think you'll stick with the ileostomy? the surgeon told me that if we're going to have more kids to do it before the surgery. also, i read your post about the cantalope getting stuck, so did it just resolve itself or did it come out and hurt a bunch? i'm scared to try melon because i've heard two horror stories now... have you had trouble with other foods getting stuck? it sounds so painful. sorry so many questions, i have so many these days it seems.
Posted 1/19/2008 8:23 PM (GMT 0)
hey ash, sorry it took so long to reply. glad that the wedding's coming together. i remember how many silly details you have to think about. i'm not someone who enjoys planning things, but it was all worth it when the day finally came.
you're not prying at all about my dad. he had colon cancer for almost 2 years and it had spread to his liver, lungs, etc... i will always be so sad that i was in the hospital for his last month and couldn't be with him, but there was nothing i could do about it. my mom passed away 11 years ago so it's some comfort to know that they are now together but i feel way to young to not have any parents already. luckily i have an amazing brother that i'm very close to.
chronic constipation would be just as if not more miserable than chronic diarreah with uc. if only we could just balance each other out! i think that's very smart to not even worry about a reversal until you are done having children, that's what my surgeon told me. i intend to do the same, if i do get a reversal. right now i really want to think i'll get it some day, but maybe once i'm used to the bag i'll change my tune. i haven't had problems with any food yet, except i tried some popcorn (stupid, but i was at the movies and it smelled sooo good). i was really uncomfortable that night but i was fine by the next day. just trying to chew everything really good. good to know about the melon, cantalope sounds so good to me lately, maybe i'll try a little...
clothes have been sort of tough because my belly sticks out a good amount now so i feel like it's an advertisement for the bag! if i'm out, i empty it a lot so it doesn't get full at all and that helps. also, wearing a tight tank top smooths it out a little. i don't really have any maternity tops cuz i haven't been able to go shopping (seems like a lot of work right now!) so i'm trying to make due with the longest tops i have. it's a bit of a challenge, but really the least of my concerns right now so i have to check myself when i get frustrated getting dressed.
i'm still having home health come, just for blood draws, picc line dressing changes and to check on my wound healing/ ostomy. they are super nice and it's great to not have to take any unnecessary trips to see the 'white coats', ha ha! well, i'm off to do my weekly hair washing- can't wait til showering isn't such a big production. for some reason i start to black out in the shower so i can't do it by myself, sheesh.
oh i was going to tell you, with my dad having colon cancer and my brother and i having uc we used to joke that we should write a book and we were going to title it "what's up your ***?" thought you'd appreciate that since you said we could all write a book about all we've been through, ha! talk soon:)
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