Follow up on my biopsy

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/21/2007 11:24 AM (GMT -7)   
The good news is, it's not pyoderms or cancer or UC of the skin. The bad news is, there's nothing they can do to really treat it if it is just a recurring ulcer. SOOOO, I am stuck with leaky wafers. I leaked yesterday, went home from work to change, and it' leaking agian today already. BOOOOOO.
I think I'm leaking today because I put a piece of tegaderm over the wound and the wound dressing. That leaked fast last time, but I thought I'd try it again in combo with the "system". No go.
When I change today I'm going to try a non convex wafer with the eakin seal. I've been using convex. This bites. I hate leaks.
 
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/22/2007 10:05 AM (GMT -7)   
What about something like a Convatec DuoDerm? It would help heal the wound, cover it, and your flange would stick to it. I know I had a patient years ago who had a wound under his flange and he used them. Maybe Convatec could send you a sample?
Judy
Crohn's Disease   
 
 
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 12/22/2007 3:36 PM (GMT -7)   
Just out of curiosity what have you tried and what did your doc recommend? Leakage is the worst--especially due to skin problems!!!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/23/2007 12:24 AM (GMT -7)   
I don't buy the "there's nothing we can do" response from any doctor. Certainly there must be something they can do. Have you considered getting a second opinion? Just an FYI, when I first showed signs of a skin ulcer, a dermatologist had me trying different topical creams that had no effect. It was the 2nd dermatologist that I saw (3 years later) that figured out it was PG, and gave me the correct treatment.  Maybe they're right in that it's not PG. But you can't continue like this. There is always a solution.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/28/2007 9:46 PM (GMT -7)   
I am so sorry you are leaking. I had similar problems for the two months after my sugery because of my huge frankenstein scar that was under my wafer. The longest I could go without changing was 8 hours. Changing 3 times a day was a nightmare b/c my skin was irritated and ripping off. My home care nurse and Dr told me there was nothing I could do but I did not accept that. I kept trying everything I could think of to help. Finally, I was able to find a system that allowed me to go 2 - 3 days between changes which allowed my skin a little time to heal. Now I get 6-7 days out of my wafers.

Keep searching for answers and trying everything you can...maybe you can come up with a new "system" that works for you.

I am sure this is frustrating for you. How are you doing this week? Any better?
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/28/2007 11:02 PM (GMT -7)   
I don't know what's going on the last couple of days. I've been having big, major leaks. I can only go about 6 hours, and I've tried convex two piece, non convex, convex one piece...pretty much everything I have. Blech. I changed twice today already. I don't know why I'm suddenly worse, when nothing else seems to have changed. This is the same batch of bags, so it's not a bad batch.  Now, the bag I have on seems to be working okay, but I have an appointment tomorrow morning early, and will have to rip it off again.

UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/29/2007 9:41 AM (GMT -7)   
It may not be anything in particular that is causing this to happen. Last week I went 8 days between changes using the "eakin system." This week I did everything the exact same (because I have this whole system thing down the a science) and I leaked 3 times in 3 days in my bed at night. For 3 nights in a row my hubby woke up to poop in our bed, dirty sheets, and having to help me steam clean my bed. I do not know what happened. Now, I am at day 4 and the itches are coming on bad. Weird? I am not sure if hormones play a part or what.

I am sure you would be very happy to go 4 days without changing....so I am certianly not complaining. I am very, very sorry you are suffering so much. Have you tried the Hollister 4x4 wafers that go over your skin and and under your wafer? They are called Flextend Skin Barriers #8800. I tried these and they worked for me. The problem was that I am allergic to this type of Flextend and it pulled my skin off just like the ConvaTec products.

Also, you may want to call Hollister, ConvaTec, and Coloplast and see if they have any ideas they can recommend. Maybe they can give you some suggestions and send you samples.

Good Luck.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/30/2007 3:59 AM (GMT -7)   
I know this sounds crazy, but I will post it anyway! A few years back, my system/skin changed as well --- I didn't have a wound to deal with but all of a sudden, my wear time decreased. I even called Convatec thinking maybe they changed something in their wafers. But, No, they didn't. They even had me return some of my used ones to see if they were defective in some way. No.

After some experimenting, I found out that I needed to use an adhesive remover even tho my skin was perfectly clean, so I thought. It looked and felt clean. I will have to admit it felt smooth as a baby's butt tho! LOL

Once I used that my wear time was back up to around 6 days again. Maybe trying that will help since you have to change so frequently already. There may be a "film" of sorts that you cannot see or feel on your skin that is preventing a good adherence. Also, I use a soft paper towel, VIVA, to wash, rinse and dry the skin to be sure that I don't leave any unwanted residue. It absorbs well and is cheap to use. Just a couple of my hints... hope you are getting along a little better than your last post.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/30/2007 11:53 AM (GMT -7)   

Good advice, guys! It's so frustrating when thigngs don't stick. I had a Doctor's appointment on Friday to remove the stitches from the biopsy, and the nurse (not an ET nurse, just a wound care nurse) gave me some strips of thin gauze dipped in Bi****h (sp? Whatever that metal is...). Anyway, since I wasn't seeing my regular ET nurse, all we had was a  new two piece convex, which has been leaking. I had no eakin seal, no dressing. But she wiped me off with a skin barrier wipe, laid a piece of the bi****h stuff on the sore, and we slapped on the wafer. Amazingly, it's still on with no leaks yet. That's what, two days now? Heh. I hope this lasts. ;)


UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/30/2007 1:35 PM (GMT -7)   
Two days and counting...wow, that is great news. You will be amazed at how fast your skin will heal when it is left alone for a couple days. Did the nurse cut the wafter differently? I have found that I have to cut my wafer just perfect. It has to fit snug around my stoma or else it leaks. If I leave 1/8th of an inch like what is recommended, I leak. I have to cut my wafer the exact size of my stoma and then after I apply the Eakin and paste, the whole is a little smaller than my stoma. The I pop my stoma through the whole. The Eakin and paste make a nice turtle neck around my stoma. I used to think that my wafer was too tight for my stoma but my nurse said it looks good. I have tried to cut my wafer slightly larger than my stoma and sure enough by the end of the night....leak!

I hope you figure out what she did to make your wafer work so well.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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