new member and need help

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New Member

Date Joined Nov 2005
Total Posts : 6
   Posted 11/25/2005 7:32 PM (GMT -7)   
Hello everyone.  I am a new member here.  I was diagnosed with uc in October 2003.  I was eventually medically discharged from the Air Force.  Everything went well until October 2004 when I got a major flare.  I was on steroids and asacol.  I was working in an area that had problems with histoplasmosis(which is a disease caused by pigeon droppings in soil)  I got the worst kind of it because my immune system was suppressed from the steroids.  I was constantly in the hospital and very ill.  I received many blood transfusions because the histoplasmosis made my uc worse.  In February 2005 they had to do emergency surgery to remove my colon.  Many of my doctors say I'm extremely lucky to be alive.  After my surgery things got better.  I had a colostomy and the plan was to do three stages of surgery.  The first removing  the colon, second creating j pouch, and third hooking me up.  I was living with the colostomy and in August 2005 it was time for my second surgery.  My surgeon and I decided to try and finish the process in the second surgery by creating the pouch and hooking me up because I was doing so well.  I had the surgery and woke up with no colostomy. BEST FEELING EVER!  But after 4 days at home I was having fevers and they found out that the pouch was leaking inside.  That day, 12 days after the surgery, they had to do another emergency surgery to unhook me and give a new illeostomy.  There was so much scar tissue and adhesions that they had problems and created a short bowel.  Everything went right through me.  On top of that, the hole created on the stoma was off to the side and everything emptied to the side and went under the wafer.  I've talked to stoma nurses and i'm using the hollister flextend and eakin rings and a belt.  It is still very hard to keep stuff from getting under and it is the most irritating and burning feeling in the world.  They plan trying to hook me up again but have to wait until the leak inside heals up.  Recently they did a test to see if it was healing and it hasn't healed one bit. 
Has anyone gone through something like this?  It is hard to talk to family and friends because they just can't understand what this is like.  They do give good support though.  I feel like the wrath of a greater power is unleashed on me and need some kind of hope that this will all work itself out.  I am definitely depressed but have hope.  I always hoped I would be married by 30.  I'm 28 now and don't think that's going to happen. 
I appreciate any help or suggestions.

Cathy W
Regular Member

Date Joined Aug 2005
Total Posts : 218
   Posted 11/26/2005 11:50 AM (GMT -7)   
Hi there,
The same thing happened to me after my cholectomy. I herniated, and perforated. Back to surgery and ended up with an ileostomy. I haven't had any leaking problems, but my stoma is larger than normal, I'm told. I use the Adapt paste to seal the wafer to my skin. Are you using the paste? Is the hole for your stoma in the wafer snug around the base of the stoma? That's the limit of what I know, I'm still new at this too. Try calling the wound care/stoma nurse at the hospital where you had your surgery. They should be able to help with product ideas. Hope this helps.

Good luck,

Medic Frank
Regular Member

Date Joined Oct 2005
Total Posts : 37
   Posted 11/27/2005 7:01 PM (GMT -7)   
Here's something the stoma nurse told me to do when placing a new wafer. Take a hair dryer and gently warm the wafer all around after you have placed the wafer on your skin. The adhesive on the wafre is supposed to use the heat from your body to activate and the hair dryer helps this along. This is what I've been doing and have had pretty good success. I also use the flextend with the eakin seals. I only use a small wedge of seal to fill a crease created by my bellybutton when I sit. I have also used the paste, but only to patch things up when I notice the seal is pulling away. One word of caution about the hair dryer (I found out the hard way). A little heat is good, a lot of heat bad! I melted the portion of the wafer that connects to the bag. Noticed it about an hour later when there was this strange odor and a feeling of wetness. Anyway go easy on the heat. Hope this helps some.

New Member

Date Joined Oct 2005
Total Posts : 16
   Posted 11/27/2005 10:03 PM (GMT -7)   
Hello..and Welcome!
I have Crohn's Disease and have been hooked up with a temp. Loop Ileostomy re-conect pending. I too like you have great support..but at times I think I will go mad, all these things the just seem to go wrong...well you need to keep your head up and know that we are all here to support also may want to try the crohn's and colitis section..
I to have issues with the bag..I have to keep going from one type to stoma with suppose to only be for a few's now been 8 weeks and counting..the problem is that I got an infection in the stomac from the surgery and it's taking time to heel ( cause for the infection I tooke steriods for about 8 months) so the wound is heeling real no re-versal till it's all closed now the stoma has been shinking..cause that is what it I have little to work with as far as flanges goes.
So everytime I change, I have to uncover it before I see what I can use this time...It's real fun..
Take  Care and Good Luck! 
Crohn's since Jan/91- 1st re-section Aug/98 2nd Sept/2005. Temp. Loop Ileostomy reversal pending...
"Life is like a bowl of cherries" :) 

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