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My distal peristomal skin pulled away

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Posted 5/22/2012 11:53 AM (GMT 0)
I started having some mild pain last night around my stoma and I thought maybe I had cut my opening too small and was cutting off my poor stella, something just didn't seem right.  So I decided to change my pouch last night (instead of this morning) and thank God I did - if hubby hadn't been here I probably would have had a nervous breakdown, well, I sort of did anyway.

I have been battling the pyoderma (allegedly) for quite some time and I don't know WHAT is going on with it now! An infection?  No, fever or other signs of infection.  Fungal? I dunno, not sure what that would look like compared to what I have.  Am I developing an allergy to the products I am using?  Ack!

Anyway, the distal portion of skin near my stoma is totally ick and now there is a smaller than dime size area that has opened up/disappeared allowing the tissue underneath to be exposed and actually the portion around it that is still intact lifts away from my body.  I have several more little pin prick holes that were/were not producing "stuff" for lack of a better term.  My output is fine and function is fine - everything wants to work, why can't my skin cooperate?!?!

I sent a pic and text to my WOCN last night (yes, we have that kind of relationship God love her!) and she called me back this AM to check on me and asked how I treated it to repouch.  I told her I cleaned the area thoroughly, applied silver Arglase powder, laid down a thin layer of cavilon, applied stoma powder, laid down another thin layer of cavilon, hit it with the blow dryer on cool to "set it up" and went about my normal pouching routine.  She said that is exactly what she would have done had I been in the office.  She asked if I wanted to be seen today and I really do want someone to look at it, it would ease my mind.  I will go in this afternoon on my way home from work - hopefully my Humira will be ready to pick up.  I think I will also give a call to my GI and see if he wants me to email him the pics that hubby took.  I may just have to do the freaking prednisone - ugh. 

So, that was my evening.  Good times :)  Oh, I would upload the picture to the photobucket account but I dunno that you guys really want to see it.

Posted 5/22/2012 12:04 PM (GMT 0)
So sorry..... glad you're seeing someone today. Sounds like you did a great job in a hard situation. Hope things ease up for you soon.
Posted 5/22/2012 12:09 PM (GMT 0)
Thank God for my husband, I swear God put him in my path for a reason - he's medical! I was TOTALLY freaking out that all my skin was going to fall off and my stoma was going to just fall off with it. He put on his gloves, got a long q tip and checked the area. Started using all kinds of medical words and I had to remind him to be husband not medical provider for a second LOL. He said the detachment is superficial and not necrotizing. He believes it to be cellulitis which may need to be treated with an antibiotic. Wouldn't that be fun, antibiotics AND prednisone - at least I'll be able to stay up all night to empty my pouch that will surely be full of watery output LOL!

Oh, the things I can talk about with you guys that NO ONE else would even understand ahahahha!
Posted 5/22/2012 8:06 PM (GMT 0)

Well, crap !!!  Just, crap !!!

You have been through so much and really need a break...and not another one in the skin shakehead

At least it sounds like you know what to do.  I would have been at a complete loss.

Here's hoping things turn around for you very soon and that the Humira clears things up with minimal or no other issues.

Ah, Prednisone?  It is what it is.  I was fortunate and only needed it for a couple of short stints with my Crohn's.  Actually, other than the "moon face" and a little insomnia, I got along better with it the last time I was on it than I did back in 1975.   I had an active toddler back then and could barely function with all of the side effects.

Hang in there :-)

Posted 5/22/2012 8:41 PM (GMT 0)
I am so sorry to read this!!! You are a pro at changing your appliance though; I don't even know what some of the things you mention are, LOL!

The first thing I thought of is the PG. Mine started just like you described. It almost look like a separation of the stitches from my skin, as the stitches hadn't fully dissolved at that time.

If you do go on the Humira, that should really take care of this. All of the research I have done indicates that the immunosuppressants are the best way to knock this down once and for all. I am surprised they still haven't tried the kenalog injections on you and at least try the protopic cream. The only thing about the steroids is, I truly believe they are the cause of the "divot" I have on the side of my stoma where the PG was. Ostomy nurse said it's because of the PG, but the research I have done says that the shots can cause "dents" in the tissue where they were given. Apparently this heals over in about 6 mos to a year, but for me it makes pouching really difficult.

You will get rid of this. It can take a lot of time. Mine took almost 4 months to fully subside. I thought it never would, but one day that was it. The injections were the key though, and althouth I hate the divot, I would take it any day over the PG. In fact, I'd take any skin issue over PG.
Posted 5/22/2012 9:54 PM (GMT 0)
I saw my WOCN and my fill in colo-rectal surgeon today and they were very proud of me for taking charge and just doing what needed to be done :) I am back on the topical steroids - paraphrasing the doc, my systemic issues are far too deep for the steroids. Apparently I should have started the Humira a few weeks ago but someone over in GI dropped the ball/was waiting for me to call and make the next more I guess? Whatever, we are moving on. Hopefully my Humira will be in tomorrow and at the latest on Thursday so I will take my loading dose Thursday night - we travel all day Friday so I figure I can just puke my guts out on the plane and others will chalk it up to air sickness. I know the Humira will not be an overnight solution but I am hoping that after the loading dose, the follow up double dose and my first regular dose there will be some major changes.

The new area that opened up is VERY superficial - shallow. I asked my WOCN about using the aquacel on it and we both agreed that the would is too shallow for the aquacel to really get in and affect. She said it was almost like a new tooth coming in - the old one has to go so it is pushed out by the new. My skin seems to have done the same - the new tissue was ready to surface so the old had to go - the new exposed stuff was already granulating last night so that is good.

I got pain meds so I am a happy camper b/c hello it is painful. She also gave me topical lidocaine to apply before I start putting on new stuff - just let it sit there for about 10 minutes and wipe off then carry on with new pouching.

Follow up next Wednesday for my normal every 2 week appointment.
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