Ugh. Tried the "system".

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/10/2007 3:01 PM (GMT -6)   
Gar. I tried Amey and Peggy's sytem for the first time yesterday, and it leaked today at work.  My output was super watery,  and I still have that pesky sore. So maybe I just need my skin to heal BEFORE I try it. WAAAHHH. Go away, stupid sore. I have another Dr's appointment Friday, and if it isn't healed they're sending me to dermatology. NOTHING seems to work when I have the sore - everything leaks and it only leaks right where the sore is, so it's probably that, right? The "system" seemed to work fine on every other part of the wafer.  I've tried about 7 different kinds of absorbant material under the wafer. I use powder. I've tried paste, seals, convex, flat, one piece, two piece, inserts...I've tried using powder, then absorbant pads, then taping over it with waterproof tape, then the wafer. Boo hoo hoo. This sore MUST GO.
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!


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 12/10/2007 5:12 PM (GMT -6)   
Did you try using angel hair and then putting tegaderm over it? Sometimes that helps...
Sorry you're having such rotten luck.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/10/2007 8:10 PM (GMT -6)   
I am really surprised that this system is not working for you. Your sore has to be compromising your wafer. Because my ostomy is so slow, I have to drink prune juice to stimulate my intestines and get things to move through. When ever I drink the juice, my stools are like pure water. This was a huge problem before I started using the Eakin and the insert because the juice kept slipping behind my wafer. This Eakin system is da' bomb (excuse the expression). I am sure once your skin is healed you will be able to wear a 2-peice again.
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 12/11/2007 11:03 AM (GMT -6)   
Yeah, I'm pretty sure it's the sore that's causing all these problems. I got my sample Cymed microskin in the mail last night, but now I'm thinking I'd better wait until this is all healed up until I try it. I'd hate for it to leak, just cause my skin isn't healed. I want to give it a fair shot! I'm definitely going to try the Eakin System again, because it felt wonderful, and like it really would work.
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 12/11/2007 4:10 PM (GMT -6)   
What do you think of the Cymed sytem...just your first impression?
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 12/11/2007 4:39 PM (GMT -6)   
Yeah, I cut it, cause it was a big one. I can try one of the little ones.

Amey - first impression of the Cymed, just by looks alone is that it's awesome. Nothing can get thinner than that! I don't quite "get" the slosure on it..is it supposed to clip?
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 12/11/2007 5:37 PM (GMT -6)   
I was a little baffled by the closure system as well. I placed the little stick-like thingy to the end of the pouch which sticks to the pouch like glue. Then I rolled the bottom of the pouch upward a few times.

I am not sure if I did this right. You can call the Cymed nurse if you find that you want to try the pouch. The Cymed nurse's number is found under the "Cymed" heading.
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 12/11/2007 6:20 PM (GMT -6)   
Okay, glad I'm not the only one who didn't quite get it. I thought about just using my clip when I tried it. LOL.
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!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/12/2007 3:57 AM (GMT -6)   
sfgiantsjo- If it is Pyoderma Gangrenosum, as I had mentioned in a previous post, then all the topical potions won't work very well. PG is a "disease" of the dermis, not the epidermis. I wasted 3 long years seeing different doctors trying to heal my skin with the methods you're currently trying. And my skin got progressively worse no matter what they tried. See a good dermatologist. My dermatologist gave me several Kenelog injections to the area and put me on a series of Cyclosporinne, and my skin was under control in a few days!!!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/12/2007 4:06 AM (GMT -6)   
I just wanted to add to my previous post. The little sore(Pyoderma Gangrenosum) for me also began under my stoma. In the 3 long years until it was diadnosed as PG it had spread to cover 75% of the area under my appliance, both arm pits, both hips, and also both legs. All this happened while i was under the care of well meaning doctors. Don't let the same thing happen to you. A good dermatologist will have things under control quickly.
 
 

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/12/2007 7:15 AM (GMT -6)   
Holy Cow Vette Guy, that sounds like a nightmare! That must have been a frustrating 3 years. I am glad you finally were able to figure out what was going on with your skin.
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 12/12/2007 9:36 AM (GMT -6)   
Vette guy - I am definitely seeing a dermotologist after this appointment I have on Friday. Hopefully, they can figure this out!! My only question is - Was yours painful? Mine is not painful at all. Do you think that makes a difference?
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!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/14/2007 9:58 PM (GMT -6)   
When it first started under my appliance it was'nt really very painful. It was about the size of a dime and was constantly weeping. It was more of an annoyance. It really only stung at first after changing my appliance and by using paste. But as it became progressively worse so did the pain. Sometimes the nerve endings would just decide to flair up and I would be in agony for a few minutes. Some of the reading I did on PG compared the type of pain to that of a person suffering from shingles because the nerve endings can become damaged over time. The absolute worst was after 3 years. It had spread quite a bit and the pain was unbearable. It was the kind of pain that makes you feel faint. Eventually I had to go on disability because I couldn't take the pain, and it was impossible to keep an appliance from leaking. It was at that time when my doctor suggested we move the stoma to the other side. When I met with the surgeon he wanted me to see another dermatologist that he new was cutting edge. She knew it was PG immediately, and took a biopsy to confirm what she thought. As I mentioned previously, she gave me Kenelog injections to the affected areas, and put me on a regimen of cyclosprrine. I started to heal within days, and the kenelog took away the pain almost immediately!!!
 
And just on a funny note. I have nasty scars on both hips from the PG. When I was in the hospital years ago, the nurse asked me what the scars were from. I told her I was born a Siamese "triplet" and I was the guy in the middle!!!

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 12/14/2007 11:05 PM (GMT -6)   
LOL. My ET nurse just today commented on the scars she can see forming where the sore has changed size! But, the good news is, she scheduled an appointment for me to see a dermotologist on Tuesday. She referred me to one that has substantial experience with pyoderma...so, hopefully, he'll be able to help. She did mention Kenelog as well. I'll let you know what he says Tuesday!

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!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/16/2007 12:10 PM (GMT -6)   
Whether it's PG or not, seeing a dermatologist is the right way to go. I wish I had done it sooner. It would have saved me a lot of misery.  Good luck on Tuesday.
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