Pyoderma gangrenosum?!

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songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3647
   Posted 6/12/2018 3:44 PM (GMT -6)   
So, my UC doesn't want to quit, I guess, even though my colon is gone! I never had this condition in my 34+ years of UC!

Long story short, I developed one and then two weird, "crater-looking" ulcerations next to my stoma. Because the situation didn't improve over 5 days, I got myself in to see my ostomy nurse, who gave me the diagnosis. (And then my surgeon happened to be in the building, so he also came in to peek! and two-for-one!)

The nurse gave me supplies and wrote down some things I should order so that I can get a bag to stick on, given the weeping skin, and they called in to my local pharmacy a prescription ointment, saying that if my insurance wouldn't cover it, I could also try a steroid-based thing they would prescribe. (Word is that the insurance has vetoed coverage; I will have to deal with that tomorrow morning.) And the surgeon gave me the cheery news that it would be VERY slow in healing because of the chemo I am undergoing. Sigh.

Just thought I'd share. Anyone have any helpful accounts of the Pyoderma ?
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16278
   Posted 6/12/2018 9:50 PM (GMT -6)   
Oh no. I am so sorry. The only person I know here who speaks of PG regularly is UB tough. I haven't seen her around lately though sad

When are you done with your chemo?
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 6/12/2018 10:53 PM (GMT -6)   
Omg....just what you don't need! The only one I think of who has/had GN is UBtough.....i think she did hyperbaric treatment, but she had other serious stuff as well.

A search should help or put out a thread specifically to her.

huge hug,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1969
   Posted 6/13/2018 4:36 AM (GMT -6)   
That stinks, I am so sorry to hear this news. I hope this is just a whacky, chemo induced event that doesn’t happen again. Hope all heals quickly.
43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3647
   Posted 6/13/2018 7:23 AM (GMT -6)   
I have two more chemo sessions to go, so about a month. Hooray! I can hardly wait. I am feeling worn down from the small but annoying side effects of the chemo.
Surgeon says we can do the take-down a month after the chemo is finished.

This PG thing is weird. I had a day a few weeks back when I had three or four bag changes in one day. (One was because of my screwup; I was hurrying and I wrinkled the cloth-like stuff around the edges so it was under the actual wafer; the other issues were, I think, because the weather had turned suddenly hot and very humid and my skin was not allowing things to stick.) Anyway, I developed a "crater" about 1/2 inch from my stoma. I kept doing my thing per usual and watching it.

Then one day I was getting something out of the back seat of the car and in closing the car door (think how back doors are sometimes funny-shaped) I HIT my stoma/bag area with the door! YEOUCH did that hurt! My belly swelled some, turned pink..... and 2 days later when I changed the bag, I found another open area on my skin. I thought I'd broken the skin by hitting it with the car door.

All of this was not healing, and the area was seeping blood under the cloth-like wafer extender area of the bag, so bags were not staying put for more than a day. So I went in to see the ostomy nurse. Boy, am I glad I was proactive!

So today I pursue the pharmacy and figure out whether to shell out $50 for the tube of #1 ointment (my insurance won't cover it) or pay less for the steroid-based ointment that might also work. Hmmm.

mom, I am thinking the way you are, and hoping this is just a strange chemo-induced thing that doesn't stay with me!

Thanks, everyone.
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 6/13/2018 6:59 PM (GMT -6)   
So sorry to read that you have an additional nuisance to deal with now! In 2016 there was a young female UCer (ca. age 25-31) in my local IBD support group who had suffered both pyoderma g + erythemia nodosum, which she said only happens to about 1% of IBDers. She showed us a couple pyoderma scars on her lower leg that looked like small birth marks, annoying reminders to her of a bad flare, but nothing that would shock anyone who chanced to see them. Here's hoping that your "craters" come under control quickly with application of the Rx ointment; just outrageous that your insurance is rejecting payment for the doctor's 1st choice. Is it a brandname med? / Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3647
   Posted 6/14/2018 8:06 AM (GMT -6)   
I spent much of yesterday waiting for return phone calls - frustrating! But the insurance was convinced to cover some of the cost of the #1 ointment; they needed some kind of pre-approval paperwork. As it turns out, the #2 ointment also has a $50 copay! So I will be out of pocket $100 for these two things. If they work, it's worth it. Ostomy nurse has been fairly upbeat, which makes me feel calmer. She also said that either of these ointments "might" work; there is no standard, proven protocol for this. One remedy works for one person but not another. I don't find this surprising; isn't this the story of IBD?

I will start using one of the ointments today. The ostomy nurse did such a nice job of packing the area and putting on a different model bag the other day, I've not wanted to tinker with it. But I want to get this pricey med in there.

Apparently peristomal (or perastomal?) PG are a "thing." I am hoping these clear up quickly and I am also hoping they do not appear on my legs or other places!
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17

quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 6/14/2018 10:55 AM (GMT -6)   
Good you will have both meds to use.....hope they work for you, and this is limited as you say regarding stoma and PG.

Hugs,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!
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