OMG! Need advice! Help!

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/7/2007 7:38 PM (GMT -6)   
So, right before I left work today, I went to the restroom - and BLOOD is seeping through my wafer. It completely covered one side. So I hurry home, and when I take the bag off, I have this HUGE sore, and it's bloody and goopy and nasty. It's a good 1 - 1 1/2 inches across. And it's deep.  I put a piece of this spongy stuff the nurse gave me before, but I know my bag isn't going to stick well. Is this an allergic reaction maybe? What the heck? It doesn't really hurt much. Has anyone had anything similar? My stoma nurse is off on Thursdays, so I can't see her tomorrow. What the heck IS it? Waaaaahhh!!!!
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!


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/7/2007 7:41 PM (GMT -6)   
How is it that I have this huge open wound, when all was well 4 days ago?
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 11/7/2007 8:16 PM (GMT -6)   
Is the stoma pulling away from the hole in your stomach. When the doctor cuts a hole in your stomach, he pushes your intestines through the hole, he turns your intestines inside out and then sews the stoma to your belly. Could there be a problem there? If your not in any pain then your skin is probably not affected because your skin has pain receptors. However, your stoma does not have these same pain receptors (nerves) and does not have any feeling. Could your wafer have been too snug against your stoma and cutting into it over the past 4 days? That would be my best guess. I do not think you are having an allergic reaction because you are not having pain. Stomas normally do not care which brand bag you use....all they care about is poop. Where is the sore exactly...across your skin under your stoma or on your stoma? Do you have a good digital camera? It is hard for me to know exactly what this looks like.
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 11/7/2007 8:27 PM (GMT -6)   
It's ovalish in shape, and it does start at the stoma, it isn't on the stoma, as far as I can tell. If you're looking down on it like I do, it goes out to the left toward my belly button. When I cleaned it off I didn't have much pain. Weird. My stoma itself looks normal. Not distended or anything. Maybe it is my stoma pulling away? What happens then?
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!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 8:52 PM (GMT -6)   
I'm sorry that I won't be of any help on this topic, but I did just send Judy89 an email asking her to take a look at your post..... hopefully, she will chime in soon.  She, too, is really knowledgeable and might have a suggestion.  Hang in there.  
 
You might also see is Shaz has an email address and send one to her..
 
Hoping you get answers soon,
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 11/7/2007 9:17 PM (GMT -6)   
Thanks. I'm worried, but I'd feel stupid rushing off to emergency for this! I'm sure my Ostomy nurse won't be able to see me until Monday, at best. :(
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!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 9:22 PM (GMT -6)   
Hang in there ....  easier said than done, right?   Do you have a digital camera? 
 
Judy --- doesn't Edgepark Medical employ ET's for their clients to  consult with?  Do you think they would be willing to talk to her over the phone and give her some suggestions in the morning?  Just a thought.....  they might even be willing to look at a digital picture via email to help you...   I just don't know.
 
 
 
 
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 11/7/2007 9:23 PM (GMT -6)   
I do, but the dock is broken, and I need an adapted to hook it up to a USB, I could use my camera phone, maybe.
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!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/7/2007 9:33 PM (GMT -6)   
that sounds just awful. I don't have the slightest idea what it is, but i wanted to tell you i hope you get it straigtend out soon!
 
 
snaej ni tfel eht no cip


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 9:43 PM (GMT -6)   

I was just thinking that the ET's at Edgepark might be willing to take a look ...  I don't use my camera phone to know the quality of pic they take.

Is it still oozing?  Any changes?  Was the blood clotty?  (sorry for the detailed questions)  Did it have an odor to it?


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 11/7/2007 9:52 PM (GMT -6)   
Well, it's completely under the wafer, so it's hard to tell. It hasn't seeped through again yet, but I did put that absorbent pad on top of it. There was very little blood really, it was more just wet and oozy. It seeped through the wafer, but it wasn't really freely bleeding once I had the wafer off - it just turned the paper towel red when I wiped at it, but it didn't drip or anything. Not super smelly, that I could tell. When I first peeled off the wafer, the goo just kinda squeezed out. (Gross, I know, but I figure if anyone can handle gross stuff, it's ostomates!

My camer takes ok pics, it might be good enough for them....

Thanks for caring. It's nice to know that not only do people here understand, but they actually CARE.
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 11/7/2007 10:04 PM (GMT -6)   
I am still trying to get a full mental picture...I am thinking that you have a gash in your belly right above your stoma. It is about 1-1.5" long and starts at the top of your stoma and then goes across your belly towards your navel? Is that right? How far away from where your stoma and skin connect is it? Is it the place where you wafer might lay when you have your wafer on? Wafers are normally 1/8th of an inch from the stoma. Is that where this gash is located? I still do not think this is an allergic reaction because your skin damage is in an isolated area and not all over. I wonder if any foods have wedged itself between your wafer and your stoma and then slowly irritated your skin. You said in another post that you ate veggies. Could tough veggie skin have wedged itself between the area you cut to make a hole in your wafer and your stoma?

I hope you get to see your nurse soon.
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


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/7/2007 10:18 PM (GMT -6)   
Sorry guys, just got home from taking my FIL to chemo.

I really don't know what it could be, but I do thing you need to see a good ET nurse or possibly a surgeon (especially if you suspect the stoma is pulling away from the skin), a GI isn't going to be real knowlegeable.

It sounds like a pressure sore, weird place for one, but there it is. I can't imagine it's an allergy, or all your skin under the adhesive would be raw. It may be a leak like Amey said, which caused your skin to get pretty raw.

Is it possible you pulled a layer of skin off when you took your flange off? I've done that, it's usually pretty painful though.

Sorry I can't be more help, and you're right the ER probably won't know what to do. I would hold out to see an ET nurse as long as you can control the bleeding and are able to keep the flange on.

Maybe call your hospital and see if there's another ET available on staff to look at you tomorrow. The hospitals usually have more than one on staff.

Good luck, let us know what happens.


Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/7/2007 10:33 PM (GMT -6)   
Yeah, it kinda looks like a pressure sore. I'll email my GI - he's the easiest to get a hold of, and ask him who at the hospital I should see.

Amey - it's not really a gash - it's almost round, like a big open sore. It's deep, it's like someone scooped out a piece of my belly. (well, no THAT deep, but it definitley deeper than just surface.) And it goes right up to the stoma - no skin inbetween that I can see, I, too don't really tthink it's an allergic reaction, Maybe it is some kind of infection? Or pressure sore. The best word I can think of to describe it is "ulcer".
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!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 10:48 PM (GMT -6)   

So, what would have caused this pressure sore?  Was it something that you wore, or some activity that caused that area to rub against something, maybe where you work?  Seatbelt in your car?

 


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 11/7/2007 10:51 PM (GMT -6)   
I did wear new jeans yesterday...they were a little more snug than anything else I've worn...hmmm....not super tight, but just more snug. It's also right under wear the plastic tab thingys are to hook a belt to. Maybe that rubbed?
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!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 11:30 PM (GMT -6)   

AHHH - HAAAA   !!!   I would definitely wear some loose clothes tomorrow!   I think we may have figured it out.... now we can go to bed!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


sosueme
Regular Member


Date Joined Mar 2007
Total Posts : 53
   Posted 11/8/2007 1:13 AM (GMT -6)   
srgaintsjo.... I know excatly what you are talking about, this happened to me about 4 years ago, huge sore opened up on the top of my stoma , very painfully and wafer would not stick because of all the weepy of the ulcer, turns out it was a fistula that had worked it way to the surface. GI started me on remicade and it took about a week before i noticed any healing after 2nd infusion it had all healed up ,left big scar tho. Check with your GI or surgeon about it ,it can be very serious and may not heal on it's own.
Hope this is not the problem but i would have it checked, might not go away on it's own, good luck and keep us posted on what happens

Sue

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/8/2007 7:56 AM (GMT -6)   
Usually fistulas aren't very big, especially when they first open up. It's possible I guess if Sosueme had one. Sfgiantsjo, have you had fistulas in the past? Maybe a small one popped, and the stool irritated all the skin around it? My fistula didn't have any blood involved when it popped, and was VERY painful on its way out, but stopped hurting once it popped, but everyone's different.

Keep us posted on what you find out. Good luck, I hope it's something simple that will clear up quickly.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 11/8/2007 9:38 AM (GMT -6)   

I know just what your talking about.  I have had the same thing.  Appliance put on and then 4 days later when I took it off there was a huge hole right underneath my stoma, I was totally freaked out.  It was about 3 inches deep and nothing but a biiig hole.  I went that day to my surgeons office (she was in thank goodness).  They admitted me to the hospital and started me on a wound vac.  The surgeon said she had never seen anything like that before where the hole just appeared right under the wafer.  She really felt like it was from bad blood flow to the skin.  I had a previous C-Section with alot of scar tissue and then the Proctolectomy/Ileostomy on top of that.   It was about the size of a tennis ball.  The wound team had to do some fancy work to get my wafter to stick over the wound vac material.  After I got out of the hospital I wore the wound vac for about a month or so and the wound completely healed.  I still have a big scar with a small indention but I don't have any trouble with my wafer sticking.  

I hope everything turns out well, I'm sure it will.  I would have never thought my hole could heal, but the wound vacs work wonders.

Blue



Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero)
6MP 125 mg po qd
Pentasa 500 mg 3 po tid
Calcium 400 mg with D tid
Iron po tid
Vit C po tid
Tylenol #3 prn
Multivitamin
Remicade - Quit working
Asacol
Colozal
Abatacept Study
Asacol
 
 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/8/2007 10:19 AM (GMT -6)   
Thanks everyone - I'm going to see if I can get into see someone who knows what they're doing ASAP. It took about 12 hours for the blood and goo or whatever it is to show through the wafer. But I can't go changing my wafer twice a day!!!! I won't have any skin left at all!! Now I'm at work with looser pants on. I hope it doesn't leak everywhere while I'm in the office. :)
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 11/9/2007 10:06 AM (GMT -6)   
Did you get in to see anyone?
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/10/2007 9:34 PM (GMT -6)   

sfgiants ----

So, what's the update on your wound?  Has the seeping slowed down?  How's it look - any better?

 

 


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 11/11/2007 11:43 PM (GMT -6)   

The ET nurse didn't seem overly concerned, she just gave me a couple different dressings to try under the wafer and sent me home. She said to come back next week, and if it wasn't better they'd send me to dematology. confused

 

Anyhow, for a while, I had to change the wafer every 12 hours. But now it's been on since I saw the doctore, which was Friday. So, hopefully it's better under there! Either that, or the dressing they put on it there is working really well. I'm planning on changing the wafer tomorrow, so we'll see what's under there then. I'm scared to look! 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!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/12/2007 2:56 AM (GMT -6)   
Be sure to keep us updated on your 'healing' process... I sure hope it is clearing up for you.  Keeping my fingers crossed for you.
 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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