Hey, so back in January '21, I had an emergency ileostomy revision. They left me with a mess of a wound, cut away too much tissue. I had lots of problems with it healing, lesions that would not heal, lots of pus, infections, etc. I saw a new surgeon who thought it was maybe pyoderma gangrenosum and suggested opening it up to let the pus out. Wrong! I have seen two dermatologists who said it was classic PG and even a small biopsy would make it worse. It is caused by trauma and made worse by trauma, it's autoimmune (I have Crohn's so pretty much everything that happens is my immune system overreacting, even when I am not having a GI flare). A dermatologist gave me corticosteroid injections at the site about a month ago, and it completely healed. Yay! The lesions are opening up again, so I am going back for another injection. I tried the corticosteroid ointment, interfered with adhesion, and solution, alcohol-based - need I say more. One of the dermatologists that I am seeing specializes in autoimmune skin issues and said that PG is usually misdiagnosed and made much worse with improper treatment. Even the ostomy nurses didn't catch it. So just a heads up to everyone that PG is usually misdiagnosed. Not sure if this is something that I will have to deal with for a long time or not. I have to change my ostomy every other day at least and use wound dressing (Aquacell and Duoderm) when it's flaring.
Hi Newnormal! Ask your dermatologist about Stelara or Humira. I strongly believe one of these two can help your situation. If you have insurance, it is usually covered 100%. Mike
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I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Hey Mike, I am downright difficult and always have the rare complications and side effects. I have tried all of the biologics (except Entyvio) and the only one that worked for me was Remicade, but after a year it started to give me seizures so I had to stop. Then we tried other biologics, some for the second time, and they all had neurological side effects and some made Crohn's symptoms worse. I have been taking Budesonide for about a year now and it is working well for me. I just had an ileoscopy and endoscopy which showed improvement. I wish there were more treatments for Crohn's!
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I had that after my initial surgery. It was terrible. My doctor gave me a steroid pill (1 mg) that I crushed up and mixed with my stoma powder. I just sprinkled it over the bad spots and put on a skin barrier film and put on my appliance. It fixed the whole horrible, bloody mess in less than a week. I never had it again, thank goodness.
New normal, I'm really sorry to hear about your situation, but I am glad it's improving. I had been on Remicade also, but it doesn't treat Crohn's as well as Stelera and Humira. I do agree, if you've had side effects from Remicade, then I'd be cautious about others. I have a niece who uses Stelera, and she has Crohn's. The Stelera works for her, and her Crohn's is in check. I also use Stelera, but for psoriasis and arthritis. Stelera, as you can see, helps multiple problems. I only take one injection every third month. I chose to do self-injection, and I have my medication shipped to me. All I pay is a $5 copay. I'm sure there are others on this site who can offer suggestions. Hope you keep getting better. Mike
How to Adjust to Life with an Ostomy with Bruce | Hollister
Hi New,
Sorry to hear about your PG issues. This is the latest I could find... if your doc doesn't have access to it... tell them to get it! Wish I had something good to tell you about it. My gastro and the derm team thought I might have it a few months back with the skin issues around my stoma... so they threw me on antibiotics... but my skin got better before I even filled the prescription. But now that I read up on it... it's obvious that they were wrong. Anyway... this looked promising!
Regards,
Bob
Cool website! I have a newfound appreciation for everything wound related. But it's another mab-monoclonal antibody and every drug in that class causes serious neurological issues for me. They are known to cause demyelination in some people, and I just happen to be some people. Ug!
10 years ago I had a nasty ulcer-like wound about 1.5 inches from my stoma on my stomach. It oozed pus and blood, preventing my ostomy from sticking. Not sure if it was PG or what it was, but I cut small squares of sterile gauze that I coated in Neosporin. Then I squeezed the ulcer until only blood and no pus came out. I then packed the ulcer full of those treated squares. My wound healed in about 2 weeks. The packing of the wound also helped my pouch stay on quite well, with just a small bubble on my flange where the wound was. My wound appeared at first to be an ingrown hair which quickly spread open into a pretty deep ulcer. The size of it was about 1/4 of an inch wide and maybe the same in depth.
Pictured in my profile photos will show the PG I suffered in the left groin area. They left it open to heal. Upped steroids. No packing. That was my treatment.
I cringe at hearing stories of how doctors mess up a patient's life because "they don't know" or never saw it before.
We are not living in the dark ages.
Hasn't anyone heard of Google? Medline? NIH?
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