Slowly eating me up

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Slice
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Date Joined May 2004
Total Posts : 277
   Posted 8/22/2008 6:45 PM (GMT -7)   
So the skin around my stoma hasn't been doing so well.  Which i guess makes me forget about the extra hole in my rear.  But the skin keeps getting worse. Saw the ostomy nurse again this past Tuesday and she put me on different antibiotics than she put me on about a month earlier when i brought up the problem the first time.  So now i change the wafer, or basically rip it off 'cause the pain was getting too crazy.  After i get it off i notice it's much darker red than before, and there are two HOLES in the dark red area.  Yes, small holes which blood was slowly coming out from.  Which would not only explain why the wafer won't stay on ( i assume it's not easy to stick to blood) and why it's killing me. All my doctors and nurses are great, which is why i don't really want to go to the ER and ask whats going on.  But i'm not sure how bad this will look come Monday.
 
If there is anyone that can share in this wonderful experience, i'm all ears.
 
mad  
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 8/22/2008 7:53 PM (GMT -7)   
Did they say what this is? Fistulas??? Have they given you any angel hair and tegaderm? Protopic? Anything?! Having yucky skin around the stoma is the worst!! I've had pyoderma around my stoma and it was horrid! I hope your docs have something up their sleeve. Hang in there.

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 8/22/2008 8:31 PM (GMT -7)   
My skin problem started just like that. The little holes eventually opened up into a sore/ulcer about an inch and a half in diameter. It stopped hurting a lot once it opened up, but it was impossible to keep a bag on. I changed almost daily. NOTHING fixed it. My docs and nurses, including my GI, my stoma nurse and a dermatologist, all swore up and down that it was NOT pyoderma. They took biopsies from the tissue, and even tried sewing the darn thing shut. Sad to say, I lived with it for 7 months until my 2nd surgery. about a week before that surgery, the sore strtedd to hurt again, and I mean something awful!! It began tunneling under my skin, and it went about three inches across my belly. Since I was going in for my step two of three, my surgeon put me on antibiotics, and said he'd check it out during the surgery. I woke up with my stoma moved to my left side!!! They still don't know what it was, but said it was horrible and just eating away under the skin, so they moved my stoma. I had my tempileo on my left side for two months, and never had a problem - go figure. I still think it may have been pyoderma. But either way, it was a pain! I hope whatever your is, it clears up. To keep bags on for longer than teh five hours it took for the sore to ooze blood and gook onto my wafer, I began using sure seals OVER my wafer. They are like huge pieces of tegaderm, shaped like a tire. So it fit around the hole of the wafer, and then was bigger than the wafer itself. Wet doesn't get through it. Since I knew it was the sore, and NOT poop, my doc said it was fine to leave it on that way for a day, even though you could tell the ooze was through the wafer itself. Does that make sense? IT's hard to explain. It might help you be able to keep your wafers on longer.

Good luck - let us know what happens.
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


vette guy
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Date Joined Nov 2006
Total Posts : 650
   Posted 8/23/2008 1:23 AM (GMT -7)   
justjenjen said...
Did they say what this is? Fistulas??? Have they given you any angel hair and tegaderm? Protopic? Anything?! Having yucky skin around the stoma is the worst!! I've had pyoderma around my stoma and it was horrid! I hope your docs have something up their sleeve. Hang in there.
When I had Pyoderma Gangrenosum it started under the appliance as well.
Slice- You should go to a dermatologist and have it taken care of, whatever it might be.

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 8/27/2008 5:35 PM (GMT -7)   
Saw the surgeon and my ostomy nurse. Both seem to think it could be Pyoderma. The holes went from being small to pretty large real quick. Good amount of blood on the wafer when he took it off. Can't be good.
I have enough holes that i never wanted. Ugh
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


vette guy
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Date Joined Nov 2006
Total Posts : 650
   Posted 8/27/2008 11:10 PM (GMT -7)   
Slice said...
Saw the surgeon and my ostomy nurse. Both seem to think it could be Pyoderma. The holes went from being small to pretty large real quick. Good amount of blood on the wafer when he took it off. Can't be good.
I have enough holes that i never wanted. Ugh

Slice- The cool thing about Pyoderma Gangrenosum is that once it is properly diagnosed and treated, it shows improvement really quick! Mine was misdiagnosed by several doctors during the course of 3 very long and painful years, not to mention I was changing my appliance daily! Yet, the right dermatologist figured it out, gave me Kenelog injections, and put me on Cyclo Sporine. The shots gave me relief immediately, and the cyclo sporine took care of the rest. I wish you luck!

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 8/27/2008 11:26 PM (GMT -7)   
I really think mine was pyoderma as well. I hope you get relief from it! At least your doctors seem to be more willing to make that diagnosis. Mine - all 5 that I saw, would not, and it resulted in me needing to move my stoma to the left hand side. Be firm with them, and make sure whatever is going on with you gets treated! :)
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 8/28/2008 5:47 AM (GMT -7)   
Ok, not to be a party pooper, but mine did not clear up easily. It caused by my Crohn's, so although the derm helped a wee bit, the only thing that helped dramatically was prednisone to kick my Crohn's down a bit. It did clear up the p.g. (and had darn little affect on my Crohn's) but the side affects--UGH!! I don't even have to tell you! I'm so sorry you're dealing with this Slice!!!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 8/28/2008 9:01 AM (GMT -7)   
justjenjen said...
Ok, not to be a party pooper, but mine did not clear up easily. It caused by my Crohn's, so although the derm helped a wee bit, the only thing that helped dramatically was prednisone to kick my Crohn's down a bit. It did clear up the p.g. (and had darn little affect on my Crohn's) but the side affects--UGH!! I don't even have to tell you! I'm so sorry you're dealing with this Slice!!!
I'm surprised they gave you Prednisone. Kenelog is also a steroid, but it is shot right into the PG, without any normal steroid-type side effects. I know it sounds painful. But, compared to PG, you barely feel the injections.
 
It's said, isn't it? I've never worked in the medical profession. Yet, I'm an expert in regards to Crohn's, ostomies, and Pyoderma Gangrenosum!

justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 8/28/2008 9:22 AM (GMT -7)   
Oh, we did the Kenelog, too!! It just wasn't enough.

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 8/28/2008 5:37 PM (GMT -7)   
Well, i'll let it eat me up before i go back on prednisone. Although when my surgeon brought up the possibility of it being Pyoderma, he mentioned Remicade. But then paused because the week before i had a meeting with my GI and he said i was free of Crohns. So go figure.
Nurse is coming to my house tomorrow, can't wait to see how large the holes are now.

Heck, i'll take the injections. I've had worse pain than that.
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 8/29/2008 2:56 AM (GMT -7)   
So are they treating you with ANYthing at all right now? Maybe you should be a little proactive and suggest the Kenalog like Vette had.... what can they say? If the answer is No, I would want to know exactly why. I had those very same injections for a horrible case of psoriasis that went out of control. I also had a topical Kenalog to use, which I know is not possible under the wafer. Just the idea that they didn't start some sort of steroid, esp since it may get you some quick relief.

Hang in there Slice. Keep us updated, k?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 8/29/2008 9:10 AM (GMT -7)   
Home nurse was here this morning. When i was at the surgeons thursday he had to make another hole to drain the garbage around it. I had NO idea he went so deep until the nurse this morning pulled out the packing and THEN TOLD ME IT NEEDED TO BE REPACKED!! Now THATS pain. Shoving the packing strip into a deep hole. Ugh. I guess on the good side the actual ulcers didn't look much bigger. So maybe it's slowing down.
I think next time she repacks this i'll take some pain meds. Woo Hooooo
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/6/2008 8:05 PM (GMT -7)   
So now i go in for day surgery next week so my surgeon can scope whats left of my insides. He's also going to try and see what he can do for the " other hole" in my rear. But right now he's somewhat concerned with the stuff around the stoma. Although i will say it doesn't look as bad as it did at first. Packing the ulcers with some silver nitrate stuff, along with the new hole he made to drain the garbage.
The worst part about the whole deal is the appliance. Even though the ulcers aren't looking as bad, they still do ooze. So it's not easy keeping something stuck on the skin. So i gave it to my boss straight out. Told him i'd be back when cr@p wasn't running down my leg.

Needless to say he was fine with that.
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 9/6/2008 8:50 PM (GMT -7)   
Hey Slice - I have some left over sure seals...I don't need them anymore, would you like me to send them to you so you can try them over your wafer? They really were a godsend for me when I had my weepy wound. I could go *almost* two days, which at that time was great. The weepy stuff shows through, but the sure seals held. My email address is sfgiantsjo at gmail if you want 'em! :)

If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/7/2008 5:47 PM (GMT -7)   
I actually have like 3 boxes of seals but never needed to use them really. Nurse the other day asked if i had ever used them and i told her i had boxes of them, but never felt the need for them.

I might try them if things continue the way they are going. But thanks for the offer.

Of course ulcers in the skin can't compare to losing Tom Brady for the season. Oh the humanity.
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 9/7/2008 6:57 PM (GMT -7)   
I don't even want to talk about it. I just got home from the Niner game. Ugh. 5 turnovers? Gawd. It was horrible.
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 9/8/2008 9:35 AM (GMT -7)   
hey Jo, I'm guessing you live in the bay...I'm just curious where you had your surgeries done.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 9/8/2008 9:39 AM (GMT -7)   
I had them done at SF Kaiser with Dr Stricker. He's Amazing!  Are you in the Bay Area?
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 9/8/2008 10:33 AM (GMT -7)   
oh how funny, I did too! Well, with Dr. Alkoraishi, but he and Stricker did the surgery together. I live in San Jose, so it's kind of a pain to drive to the city for follow ups, but worth it. There are no colorectal surgeons at the Kaisers in the South Bay, so I'd much rather make the drive to see a specialist than go to a general surgeon. And it seems like you're doing well, so that gives me high hopes for my reversal!
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 9/8/2008 1:55 PM (GMT -7)   
Cool, I live in Mountain View! I totally agree about the drive. UGH! But, you've got a great team working for you - I'm sure your reversal will go great. You must've gotten out of the hospital from your 1st surgery just as I was going in for my reversal (August 8th, 2008). Are you doing a 2 step, or a 3 step? I had mine done in three steps. My email address is in one of the replies above this one - email me if you have any questions at all, I can even come visit you in the hospital if you want! LOL.
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/24/2008 10:36 AM (GMT -7)   
I seem to be having this problem now too :(
The stoma nurses don't think it's pyoderma, and it doesn't hurt or pus/bleed all that much. However, I do need to cover the hole with something so that the wafer doesn't stick to it. I was given felt (calcium algenate or something like that) and styrafoam (tegaderm I think it's called). The styrafoam has collagen and it seemed to be helping the hole heal a little bit, but I guess it was too thick because the wafer would leak every day. I went back to using the felt yesterday, I was getting 5ish days wear time when I was using it before. It's been about a month and it hasn't healed so I'm kind of sick of dealing with it. It's not quite so deep anymore, but has gotten wider (I think Slice mentioned this same thing in another post). I am having my reversal in 3 weeks though, so I may just have to wait it out. Surgeon said the date is tentative because I'm still on steroids and had issues when I tapered off prednisone last time, but I'll have to have a boost of IV steroids either way so I don't see the problem.

Jo, did you go to the Santa Clara wound care center? I think the nurses thought I was you because they asked if I had my stoma on the other side before, haha.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008

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