anyone ever develop an ulcer (pyoderma gangrenosum) around their stoma?

I have a permanent iliostomy due to Crohn's.  Had the surgery in March of this year.  Things were goin great and still are except for the little ulcer that popped uup right next to my stoma (a circle about the size of a pencil eraser).  Its been there over a month now.  My WOCN gave me Elidel to put on it, and also some special gauze to cover it, since its under the adhesive portion of the wafer.  I change my appliance every three days to keep a close eye on it. 

Just wondering if anyone else has any experience with pyoderma gangrenosums...

Its does seem to be slowly shrinking...i'm just impatient :) 

I was a pyoderma gangrenosum patient in 2003 and 2004. In 2003 it took 19 =
days to get diagnosed, I was transferred from one hospital to a second hosp=
ital. The first hospital had a surgeon that did not understand the disease=
and did a second abdominal surgery on me (he did the first also and it was=
a simple laporoscopy procedure to remove a burst ovarian cyst and the site=
"got infected") he ended up excising 5 pounds of flesh from my abdomen and=
left it open to heal. It wouldn't heal and I was transferred to a teachin=
g/university hospital 75 miles away by ambulance. It took the teaching hos=
pital only 19 days to diagnose me and get me on a treatment plan. I was on=
IV antibiotics and high dose steroids and two different potent pain killer=
s. I believe the er pain killer I was on was morphine and then my immediat=
e pain med was dilaudid that I had to take before my dressing changes as th=
e hole in my stomach was very deep and had exposed nerves. My DH took fami=
ly medical leave from work and was my caregiver as it was even hard to walk=
let alone the pain being unbearable. It took me almost 6 months to fully =
heal. I was healed by just doing the steroid taper. The day before I was =
released from the hospital, they did a bone marrow biopsy to see what was g=
oing on with my immune system. They said that people only get PG with a co=
mpromised immune system.

In 2004, I was diagnosed with Acute Myelogenous Leukemia (blood cancer). A=
t that time, I had a large growing ulcer on my right leg and it was so pain=
ful that I couldn't walk. I was immediately admitted to the hospital. I w=
as started on IV antibiotics and they weren't helping. I was again transfe=
rred by ambulance to the same teaching/university hospital that I was the l=
ast time, but this time to go through treatment for acute cancer. They hea=
led the ulcer on my leg by starting me on chemotherapy for the cancer. It =
just started healing when the chemo came. It was dressed with a wet dressi=
ng as was my abdomen the first time. They caught the leg ulcer very quickl=
y and I barely even have a scar from it. The scar left over from my abdome=
n is horrible, over an inch wide and it is fused to the hip bone (pelvic bo=
ne) at the very top of it. I went through a bone marrow transplant at the =
end of 2004 that cured my cancer. I am now cancer free, but I am facing an=
abdominal surgery to repair a hernia where I had the initial PG problem. =
None of the doctors know if I still have the PG or if it may have been cure=
d by the bone marrow transplant. I am scared to go through the surgery as =
I don't want the PG back. =20

Very late in 2004, between my first round of induction chemo and the bone m=
arrow transplant, I found out that my bone marrow biopsy from 2003 actually=
showed that I had a compromised immune system and that my blood had myelod=
ysplatic syndrome. That is a precurser to leukemia and the docs never even=
told me I had it. My cancer was found because I had started a new job tha=
t was very physical and I was bruising horribly and my husband made me go f=
or a physical. It was diagnosed 2 weeks after the physical. It only took =
that long because I was afraid of getting a second bone marrow biopsy becau=
se the first one was pretty painful.

Anyway, that is my story and I would love to hear from any of you and know how you=
r disease is progressing. I am now on disability because of the cancer. =
I have several after effects from the bone marrow transplant and haven't be=
en able to return to work.

Thanks!
Trudy K Donnelly in Ohio
[email protected]

CorgiMama
The product privey mentioned is Friars Balsam Compound Benzoin Tincture. The manufacturer website is www.rougier.com. It is under first aid. The phone number is 866 470 6886. It's about $35 for 100ml. I put it under my wafer with every change. It comes off clean with the wafer. It protects and heals open sores. I have not had open skin around my stoma since using it.

Dan

misspinkie
PG???? No, I'm not pregnant!!! I was never on remicaid. I did take prednisone. I never had any pain with UC or with ostomy.

Where are your ulcers?

Dan

pinkie
I have no open wounds or ulcers.

Dan

Thanks privey and Dan - I have a open sore around my stoma and a radiation burn on my tummy, with very sore soft skin just where the end of the base plate sits, I will try Friars Balsam Compound Benzoin Tincture, I hope they can get it here quickly - Tell me about it I went to the nurse where i am having my radiation treatment and I ended up explaining to her what an ileostomy was it is to scary.

In May of 2006 I lost my husband of 43 years to cancer. In November of 2006 I began to experience UC flares, along with a pyoderma outbreak on my scalp. I was so fortunate to have a wonderful doctor who recognized the outbreak as pyoderma gangrenousum. He put me on 40 mg of prednisone. He said in his 34 years of practice he had only seen one other case; a gentleman whom they nearly killed with faulty treatment, surgeries, multiple hospitalizations and enormous amounts of pain and suffering. They say stress has nothing to do with it, but I personally disagree. When you are stressed, you lower your immune system defenses. I was totally stressed by the loss of my husband. After several weeks my pyoderma cleared up and I slowly tapered off the prednisone.

In 2007 I left Alaska and returned to the Lower 48 where I was not so fortunate with doctors at first. This time the pyoderma wound was on my leg. It was covered with an oyster like scab and was not painful. It got infected and the doctor called it cellulitis and removed the scab and told me to do wet to dry treatment, You put a wet gauze on the open wound, let it dry, and yank it off. Excruciating pain. This incorrect diagnoses and treatment set the pyoderma on a rampage. I insisted on seeing someone else and was referred to a wonderful dermatologist who recognized what it was immediately. I was put on 60 mg of prednisone, very gradually tapering off as the wound itself began to heal. The wound was on my outside right leg and grew to four and a half inches long and three and a half inches wide after the faulty diagnoses and mistreatment. My dermatologist monitored me weekly at first and then gradually lowered my prednisone. It took over a year to heal. It was the worst of the five pyodermas I have had. My heart bled for misspinkie and the loss of her breast.

It is Monday, January 2, 2012 and I have just felt a lump on my head. I started flaring last Thursday, 1/29/2011. When I started flaring I decided to look for others experiencing what I have experienced and am experiencing and found this forum. I just today put myself on 10 mg of prednisone. If the lump goes down with that amount, fine. If it gets bigger and starts oozing, I'll increase the prednisone. I now have four wonderful doctors; a primary care physician, a
gastro interologist, a dermatologist, and a wound care physician. For long term care I have been doing Humira every other week. I don't think it is quite as effective as Remicade and may ask my GI man about going back on Remicade. The Remicade and/or Humira are not the first line of defense. It is definitely prednisone for me. I get the chipmunk cheeks, the water retention and the weight gain. But they are all preferable to the pyoderma. Today is a holiday, but I will check in with my dermatologist if the lump doesn't go down significantly within a week.

Hope this helps someone.

Thanks for the post, misspinkie. I am so happy you have found relief at last. It is a constant unrelenting pain that most of us on this forum know all too well. I am so sorry you had such terrible results from the misdiagnosis with your original doctors. Do you have ulcerative colitis or any other accompanying auto immune disease? Pyoderma is quite rare. However, you would expect doctors, even if they rarely or perhaps never see one, to know about it and not leave someone in the shape you were left in.

Hi, in the beginning of 2012 I developed pyoderma gangrenosums about an inch from my stoma 6 weeks after I was given an ileostomy. I am fortunate enough to be treated at the Cleveland Clinic and went to their Digestive Diseases Department for my care. The WOCN nurses told me that it wasn't my fault that this developed and it was hard to cure. They told me that they have people under treatment for YEARS for this condition. That being said, my case was cured in 8 weeks.

My case was difficult to treat because the infection was right next to the stoma. It had to be covered by a stoma pouching system while it was being treated. Even though the wound was small at the surface, it was deep and the surface skin eventually sloughed off, revealing a large and deep wound. The first thing the nurses did was get a CT scan ordered to make sure the wound was not an abscess (infected from within the body). It was not.

The nurses tried using Mesalt, a special hydrophilic fabric soaked with salt, to pull the infection from the wound and hold it in the fabric. The stoma pouching system had to be changed daily since the wound dressing had to be changed daily. This was very time consuming and very painful (salt in wound!). The nurses poked around with Qtips to get off all the dead skin. Eventually, someone suggested they use Lidocaine to numb the area. That made it a huge positive difference in my ability to lie quietly during treatment. After a week showing no improvement, they tried using Aquacel Silver. Silver is known to have antibiotic properties. Again, after a week with no improvement, they moved on to another treatment, Medihoney.

Medihoney is a special honey collected from bees that fertilize tea trees in Australia (I kid you not!). This honey is known to have anti-microbial properties. Medihoney is used for burn patients. Medihoney comes in tube form and fabric form. They cleaned out the wound with saline, packed in a little liquid Medihoney from a tube, covered it with fabric Medihoney and put on a stoma pouching system. After daily dressings for a week, the infection stopped spreading. After one month, the wound was closing. After 2 months, I had grown new skin.

Best wishes to you in dealing with this difficult skin condition.

Post Edited (LifeIsWonderful52) : 6/11/2012 11:15:18 AM (GMT-6)

to Life is wonderful52 thank you for that insight. My mom has an open wound next to her stoma. the docs at the wound center cant heal it. they said sorry there is nothing we can do. This is so unacceptable from a place that calls itself a wound center. Community Medical Center in Toms River nj. Any other advise would be greatly accepted.