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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 1/18/2010 10:49 AM (GMT -7)   
How long should I expect the output to be frequent and watery? It was a little solid in the hospital for a day or so but it has been completely liquid since then and I was up every hour in the night emptying it. It's been a little over a week since this last surgery. I haven't been able to eat much yet. Today I had an English muffin with peanut butter and a banana so far. My ostomy nurse suggested marshmallows to slow things down to change it, but it doesn't work.

Also, I have a lot of problems with leaks. This setup has been on since yesterday morning, which is a miracle, but I dont know whether I should wait for a leak to change it or change it when I see a dry time. If I wait til it leaks, it is very hard to get a new one on since I can never get it dry enough, but I hate to mess with it if it isn't leaking yet.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma impossible to keep a bag on
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
Now just trying to make it 6 months with keeping a bag on until we can try the next surgery again


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/18/2010 11:39 AM (GMT -7)   
well its gonna be watery until you start eating more food. If you dont put solids in, you wont get solids out. Thats also probably the reason for your leaks, the fact that its so watery. Why cant you get it dry enough?
Tell us your process, what you are doing right now, and that may help us trouble shoot.
Something you can do to combat the liquidy is to add those geltabs (the ones you should not put directly in your toilet :D) they will soak up the liquid some and keep it from oozing in your bag and all,plus it will feel better.
Also some immodium might help
hope you get things all fixed!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 1/18/2010 11:51 AM (GMT -7)   
I haven't tried the Immodium yet, as I was waiting until I see the surgeon again to get the ok. I can't get it dry enough because it is constantly spitting stuff out and it makes a very long, frustrating process to change everything. I haven't found a time where it stops long enough yet to change it.
I know I need to eat more. I just don't really feel well yet. I wouldn't except it to have so much output when I'm not eating and drinking that much.
Right now, I am doing what the ostomy nurse showed me, which is a little powder, skin prep, then a Hollister wafer with part of the adapt ring around the middle where it was cut, then 2 pieces of that at 9 and 3:00, and a little piece of it on the skin where there is a gap, and a small amount of paste over the ring and pieces, and then the bag. I usually use the hairdryer after I put the wafer on (if I have time before getting the bag on). Oh, and medical adhesive spray on the wafer, too. I also use a belt. I think I have a hard time with cutting the right shape (I am using the cutout pattern the nurse made but it may have changed shape in the past few days) and getting the wafer centered right. I have a lot of stomach fat and it changes shape when standing vs. laying (how I put the stuff on), so I stretch the stomach up and as flat as I can when putting it on, but it's still hard to get a good seal. I have home nurses coming to do wound care and other things and they are not even able to get a bag on well either, but no one is suggesting any other methods. Everyone keeps just trying the same thing the stoma nurse showed me, but I feel that there must be other ways of doing it and I am getting very frustrated, as I cannot stay home much longer but I am afraid to leave with the leaking and plus my skin gets very irritated quickly.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma impossible to keep a bag on
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
Now just trying to make it 6 months with keeping a bag on until we can try the next surgery again


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 1/18/2010 11:52 AM (GMT -7)   
Oh, the gel tabs...are they specifically made for this? Do you get them at an ostomy supply place?
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma impossible to keep a bag on
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
Now just trying to make it 6 months with keeping a bag on until we can try the next surgery again


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 1/18/2010 12:14 PM (GMT -7)   
Oh, sorry to keep adding more but I can feel itching/burning the whole time, even though it's not leaking. Maybe my skin is really sensitive to the pastes and things. I wonder if I should try not doing all the stuff she told me and try something more simple
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma impossible to keep a bag on
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
Now just trying to make it 6 months with keeping a bag on until we can try the next surgery again


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/19/2010 11:54 AM (GMT -7)   
Hi, pam222,I use the gel sachets called moreform and get them from my supplier they are really good I put 3 in the pouch before bed and put two in after emptying the bag throughout the day they are a godsend.
Answer to your other question i would cut down on some of the stuff you are using. this is what i do i have a retracted ileo. clean the area, dry well, add powder if the skin is irritated, don't use if its not, blow the excess powder off add a small amount of barrier,apply an eakin seal around the hole in one piece not bits, put on pouch and run finger round the inside quite firmly, i then add sure seals round the flange for extra protection, I haven't had a leak for ages.
As for your sore skin have you eaten anything acidy or spicy?as this can irritate the skin. also if you are not eating enough it could be the acid from the stomach. Hope this helps.Bevx
Diagnosed with crohns at 13 now 43
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/19/2010 4:06 PM (GMT -7)   
I order my tabs from edgepark they are called gel-x. I dont use them all the time, but they are very good when my output is watery or when i am going out.

As for your leaking and such, i think you are using way toomuch stuff! Less is more in these cases. Also, you probably do need to check the size everytime at this early of the stage. It changes ALOT in the first 2-3 months. And can keep changing after that.
This is what i do when i change.
I take a shower, then take my stuff off, dry the area very well.
I put paste on the wafer, around the hole. i dont use powder or spray or anything, i found that when i used those i got less wear time.
I lay down on the floor, that way my fat falls to the side, lol. and i put the wafer on and press down. then i snap the pouch on.
Then after i stand up i fix the pouch the way i want it. I find that i cant get the bag on the way i want it laying down. After i get it like i want it, i use the hair dryer on the wafer for a few seconds, press it down and again and then go!
I also use a sure seal, but you may not want to do that yet.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/19/2010 4:07 PM (GMT -7)   
Oh and i think that once your output thickens up some you will have less leaks, the liquidy stuff gets under the seal alot easier than the thicker stuff
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 1/19/2010 4:13 PM (GMT -7)   
Thanks. Yeah, I kind of feel it is too much but I was just following what the ostomy nurse told me since she thought it would be a difficult one to keep from leaking. We never tried anything more simple, though
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma impossible to keep a bag on
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
Now just trying to make it 6 months with keeping a bag on until we can try the next surgery again

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