I might BE an a-hole, but I don't HAVE an a-hole!

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not creative
Regular Member


Date Joined Mar 2007
Total Posts : 470
   Posted 3/28/2010 5:44 PM (GMT -6)   
Well, March 9th I had a total proctectomy with end colostomy. My surgeon said it would probaby be around 5 hours for the operation, it ended up being 10 hours! She said everything went perfectly, however, the disease was so severe, it took that much longer to get everything out. She also told me that without the surgery, my vaginal walls and my rectum would have been "communicating" in a couple months which apparently is as bad as it sounds. Anyway, she said the rest of my intestines looked "pristine" and that the surgery effectively cured me of my Crohn's (I know it could come back elsewhere). She said there are some people with Crohn's Colitis whose disease never comes back anywhere else- I'm hoping I'm one of those!
 
So anyways, I now have a sigmoid colostomy and it sucked at first but then it was great and now it sucks again- all of this happening in the span of three weeks! My problem now is that I keep having leaks. The stoma looks like it's at the center of a volcano caldera. I'm going to try and get some convex wafers but until I can, I'm trying so hard to get the Eakin seals and the Adapt Paste to work with me and I'm not having much luck. I think it's because the stoma is shrinking faster than the swelling is going down. Maybe I should go on like a juice fast to lose a couple pounds off my stomach? Who knows. I just hate that my skin is painful from so much changing and pulling and having poo sit on it.
 
My other problem is that the nurse did something called "cresting" on it last week when the skin was irritated from poo where she put some powder on the skin and got it wet with a wipe. I'm pretty sure I had an allergic reaction to the stuff so now my skin is red and painful and unhappy and I try to let it sit open and air out but that doesn't help enough.
 
Oy. I know this is better than I ever was with the fistulas and abscesses and skin tags and lymphedema and pain but right now Im not feeling so wonderful!!
Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002. Three abscesses that are now fistulas, with three setons!
On: Zoloft, folic acid, b12
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction

3-9-10: Total protectomy with end colostomy. Trying to get used to this whole new way of "going"


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/28/2010 6:03 PM (GMT -6)   
Im sorry your having so much trouble. There are many on her that can help much better than I can, for they have been doing it for much longer. I will say for me less is better. When I was irritated I didnt put anything on it, put a wafer on and the next time I changed it was better. I have always used an eakin seal and no paste but now I have a colostomy at my transverse colon and I cant get the eakin seal to work so I may have to go back to paste. Good luck.... you have many friends here.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/28/2010 6:54 PM (GMT -6)   
The Eakin Seal is really good at protecting your skin without all that other stuff...I wouldn't use the paste because it contains alcohol which can make those problems worse.

I would suggest using a light amount of powder on the redness and the Eakin alone...the only thing is, if you need convexity, nothing is really going to work/heal until you can get them:( Do you have a belt? That could help a little in keeping things in place.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Post Edited (OHIO76) : 3/28/2010 6:53:06 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/28/2010 7:33 PM (GMT -6)   
first thing is to make sure that you are getting it good and clean between changes.
Also, i would try to do it without anything put paste or an eakin seal for a change. The barriers and stuff shorten wear time, and its really hard on your skin to be changing it.
Eat some thickening foods, and use the gel tabs, so that you wont have such liquidy poo.
I dont suggest the juice fast, cause that is gonna increase your output and make it pure liquid.
Have you tried different brands?
Be sure that the hole is small enough, i usually cut mine a tiny bit smaller than it actually measures.
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-


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/29/2010 1:54 AM (GMT -6)   
Everyone else had the great advice, so I'm just writing to let you know it gets better. I had so many problems at first I cried from the red skin pain and embarrassing accidents, that happened all the time.

I still don't have it all figured out but I have more good days than bad. Yeah!! Happy face inserted here.

I did use some skin barrier spray that helped when things got really bad but as summerstorm wrote the wear time gets cut down. I try to air mine skin as much as possible when changing also.

Companies will send you samples. I appreciated that, so I could see differences and find the best one for me. Still not positive but narrowing it down.

I hope you find some ideas here that help. Good luck on your new adventure.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 470
   Posted 3/29/2010 11:52 AM (GMT -6)   
Thanks everyone, yesterday I tried a flat Hollister one piece with the Eakin seal and it held all day and night. I am going to try the two piece with the Eakin today and see how it goes. Thanks for the advice about alcohol in the paste- it totally explains the burning! I will try it without it until my skin gets better.


Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002.
 
Three abscesses that are now fistulas, with three setons! All gone as of March 9
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction
On: Zoloft, folic acid, b12, vitamin c, multivitamin

3-9-10: Total protectomy with end colostomy. Trying to get used to this whole new way of "going"


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/29/2010 3:01 PM (GMT -6)   
I had the awful burning/skin breakdown as well with my sigmoid colostomy. I now use "liquid bandaid" the 3M, no sting stuff at every change. 2-3 thin coats around the stoma, about 1/2 inch around (as far as the poop can go!!) I use the Hollister 2 piece with convexity and an eakin ring around the stoma under the skin barrier. I honestly don't know what I would have done if I never heard of using liquid bandaid. It's amazing and my skin is now all pink and healthy.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/31/2010 9:49 PM (GMT -6)   
Allie, Where do you order liquid band aid from? Rosemary

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/31/2010 11:34 PM (GMT -6)   
You can find it in any major drug store. London Drugs / Shopper's Drugmart / Rexall here in Canada. I think Walgreen's in the states. The brand name is "Nexcare" and it is "Liquid Bandage" the 3M, new formula, no sting. It has honest to goodness saved my skin. Oscar is not perfectly round so even cutting the skin barriers dosen't mean i'll get a good fit. I use the Eakin Ring and paste but there is always a tad of skin showing. The liquid bandage has made a barrier that even the poop can't penetrate!!
 
 
-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

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