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Doodle38
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/2/2008 1:30 PM (GMT -6)   
I just joined today and wanted to say hello to everybody. I am really glad I found this board!

I have an ileostomy after unexpected surgery to remove my colon. I had antibiotic resistant c-diff and ended up in the hospital. While there they discovered that I had UC (not sure if the c-diff aggravated it or not, the doctors are debating that, but I never had UC symptoms before the c-diff). After two weeks trying to bring the UC under control I was told surgery was about the only option left as I was just getting sicker and sicker. The surgery went fine but (probably because I was so sick) I had a series of complications afterwards. I spent a month in the hospital -- there were many days I didn't think I'd ever get out and I missed my kids so much!

I have been home now about a month recuperating slowly. It's frustratingly slow at times. And I still have a drain in for an infection in my pelvis -- the fluid is gone but we're waiting for the hole to heal. If it doesn't heal I'd need more surgery -- so I'm desperately hoping it heals. I don't want more surgery!!!

Technically I'm supposed to have the reversal done once I am healthy. It wouldn't be till next summer because I'm out of vacation/sick time at this point. But, honestly, I'm not sure I want to do it. The idea of another surgery and potential complications and being stuck in the hospital again scares me. I know it may go just fine but I'm pretty worried about it right now after everything I just went through and am still going through. So I'm putting off thinking about it right now.

I am having some problems getting used to the bag -- I can change it, empty it, etc. no problem. But I have problems with leakage -- not a lot, just enough to cause skin irritation in two spots. I'm changing more frequently to try and clear up the skin but the fact that no matter how perfectly I seem to get the seal it still leaks a bit is driving me up a wall. A additional frustration when I'm easily frustrated.

But I've really enjoyed reading the posts here and hope to get to know everyone!

Marie

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/2/2008 5:29 PM (GMT -6)   
i am glad that you are startign to feel some better, and it sounds like you are really dealing well with having an ostomy, that's over half the battle
At first, you probably will have some trouble with leaks, it takes a little while to get your technique perfect, lol. Peggy will tell you to use eakin seals, and they seem to work for everyone.
Where are the spots that you are leakign from? you may be cutting your hole for your stoma too big.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/3/2008 5:57 PM (GMT -6)   

Doodle38-Welcome to the board!  This is a wonderful place to learn tricks to living with an ostomy;) 

I am a HUGE believer in the EAKIN SEAL.  I have a very uneven stomach which was prone to "lifting" from around my stoma which caused that awful irritation. My ET nurse suggested I try them about 5 years ago, and I haven't done a change without one since!

Have you tried other pouching systems?  Sometimes it can take a little while to find the system that works best for you...Have you suggested samples from different manufacturers?  They will gladly send you a few samples.  You can go on to Hollister/Coloplast/Convatec's websites and check them out. 

Good luch and remember there are no stupid questions!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/4/2008 3:05 AM (GMT -6)   
Aww man Summer, you took the words right outta my mouth!

Marie - you really should try the Eakin Seals. If you need any info on them, just let us all know. There are several here that use them.

Summer likes to "stick" with the stomahesive paste just so she can post funny stories - she seems to have things happen to her that just "ain't right"!!!!

Ask any questions you may have --- we are all in the same boat on this forum, and have a lot of good hints for you.

Good luck and welcome to HW.com!
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 7/4/2008 9:43 AM (GMT -6)   
ha ha smartie. actually i have stuck with the paste cause, other than the aforementioned stories, it has worked so far, and i am one to not mess with what is working! Plus i got some of the seal things, or at least that is what i think i got and i don't understand them

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/5/2008 4:10 PM (GMT -6)   

Doodle, Welcome to Healing Well. :-) I'm sorry you had to have surgery and are having leaks. I recommend Calmoseptine Ointment for your skin and an Eakin Seal under your wafer.

Summer, I re-wrote the Band-Aid song for you: "I am stuck on Stoma Paste, 'cause Stoma Paste's stuck on me!" tongue

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 :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/5/2008 6:03 PM (GMT -6)   
HEHEHEHEHE -- good one Cece!!   

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 7/5/2008 7:39 PM (GMT -6)   
that is really funny!!! and now that will be stuck in my head all day!

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 7/11/2008 6:30 PM (GMT -6)   
Doodle, I've had my loop ileostomy since July 23, 2007, so almost a year. It took me several months to find the product that worked best for me. I have extremely sensitve skin. I started off with Hollister (which is what the hospital sent me home with), then my ET nurse had me try Convatec, then I finally ended with Coloplast. To me, they are the best. I found their Sensura line is the best for sensitve skin. For almost 6 months, I've been "irritation free"! What really cleared my dermatitus/irriation up was Kenalog spray. You have to get it by prescription. Once you spray it on, it dries right away so you can put your pouch and stuff on. If you have severe itching like I had, Atarax (another prescription) works well.

Good luck!

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 7/11/2008 7:26 PM (GMT -6)   
welcome doodle, i'm an eakin seal junkie as well due to peggy lol. Also it helps that you can put them over the irritated skin and for me, my little bit of irritation cleared right up! glad u found this board its a great place to be
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you

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