Stoma Ulcers or Keloids? My stoma scare! (With pictures)

Recently I went through a scare with my Crohn’s/ostomy.  It was something that wasn’t expected since I’ve been feeling so well, but I wanted to share it to hopefully ease others minds that will be going through the same thing since I’m not inventing the wheel by any means.

About two to three weeks ago while changing my ostomy, I noticed an off white area on my stoma.  It wasn’t anything big, but was large enough to catch my eye.  At first sight I thought it was a piece of adhesive from my appliance that rolled up on my stoma.  Since I believed it to just be adhesive I attempted to get it off.  Soon after removing it, the area started to bleed slightly and in the moment I knew it wasn’t adhesive.

Idiot Disclaimer for myself:

I know what you’re thinking, how can he be so stupid?  If you haven’t had or don’t have a stoma it’s hard to describe.  The first thing you have to remember, is that the stoma doesn’t have any nerve endings so when touching it you can’t really get a sense for what you’re touching.  Second it’s wet and very soft, so you can’t get a good feel for anything.  Lastly, when changing it, you aren’t moving that slow so you don’t have unlimited time to make a decision on how to deal with any given situation.

Okay back to the point, my mind started to race.  It doesn’t take a genius to think about what can happen to a stoma and what it would look like if disease were going to return.  The idea of Crohn’s disease and ulcers on my stoma were hard to ignore.  I called all my doctors and started to make appointments to figure out what was going on.  This is the picture I took with my phone the first time I saw it.

The first appointment with my surgeon a couple of days after finding the white area was scary.  One of the first words out of his mouth was ULCER!  Not something that any IBD patient wants to hear.  He went on to explain that an ulcer can have many different meanings and all though it looks like an ulcer it might not be because of IBD.  Due to the area, he thought that it was an ulcer caused by the rubbing of my appliance on my stoma.  Nothing to worry about and would hopefully go away.

Well that was until I changed my ostomy again about 6 days later.  The “ulcer” was bigger and other areas started to look like more were forming.  Once done changing it I took some pictures and called all my doctors as well as my ostomy nurse.  I needed to figure this out before it got worse.  Here is a better picture of the largest “ulcer”.

Here is a picture from above at the other areas I believe ulcers to becoming in.

The next day I saw my gastro doctor and he used the “ulcer” word as well.  There wasn’t that much that could be done.  He suggested to try to put an ointment on the area that would help (This was something I wasn’t sure about, how was anything going to stick to my stoma?).  To keep it short it didn’t and now I was really worried.  How was I going to treat this?

The next morning I was going to see my ostomy nurse.  I was thrilled about seeing her!  As great as my doctors are, they don’t see that many stoma’s.  After the actual procedure is done they only see a stoma when there is a problem, I wanted to see someone that took care of stomas at all levels of health.  When seeing my ostomy nurse she told me that it was NOTHING.  The “ulcers” that I was told were on my stoma weren’t ulcers at all, they were keloids.  A Keloid is “a type of scar which depending on its maturity is composed mainly of collagen…Keloids are firm, rubbery lesions or shiny”.  For more reading you can click this link Keloids.  After she continued to tell me that this wasn’t anything to worry about at all and was something that wouldn’t affect my stoma.  She went on in telling me while looking directly at my stoma that she wished all of her patients had a stoma as healthy as mine.  Words that you love to hear from someone who sees a ton of stomas every week.

Later that day I saw my surgeon again and he told me that my ostomy nurse was right and I had nothing to worry about.  The words of Crohn’s or surgery weren’t even mentioned.  Topics that I believed were going to have to be covered and talked about.

In the end, I wanted to share this because other ostomy patients are going to have this happen.  They will see a growth of some sort on their stoma and start to do what I did, FREAK OUT AND START THINKING THE WORST.  Hopefully this post will find them well and they’ll know not to worry right away.  Go see the people that know best and find out what is going on, it might be a situation like mine which is nothing to worry about.

Never Stay Quiet

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11 Responses to Stoma Ulcers or Keloids? My stoma scare! (With pictures)

  1. Sharry Budd says:

    I have had these in the past as well. Yes I too have tried to pick at them thinking it was some sort of residue left behind. I used a Q-tip and it wouldn’t come off so I left it and watched it for any changes. It eventually went away and I thought nothing of it until you mentioned it.

    Good topic to bring up as I’m sure there are many out there with this problem, which really isn’t a problem. Just keep an eye on it for any significant changes that don’t seem to be sorting themselves out.

    Good post! Thanks

    Sharry

  2. Melanie says:

    Thanks for sharing. I have not had this problem, and it’s nice to know it’s nothing to freak out about

  3. Ketty says:

    but keloids are difficult to get rid off…. i have one since 10 years now. I have been diagnosed with Crohn’s last week in CT scan which i did thinking its appendix. Now i need to go through the series of test to get it confirmed stamp of Crohn’s. Hope its not Crohn’s and nothing serious too… keeping my fingers crossed.

    • Rachel says:

      I can’t tell you how greatful I am that you posted this!!! I just saw 2 on my stoma lastnight while changing it and couldn’t sleep all night! I will mention to my Dr. but not be freaking out in the meantime! I imagine you know what thoughts go running wild in your head after noticing this! I was to chicken lastnight to even look it up for fear of what I might find. Thankyou again so very much!

  4. thank you soo much! I too have a sore on my stoma! Thank for making me feel better!! Love, Jules in Loxahatchee

  5. thank you soo much! I too have a sore on my stoma! Thank for making me feel better!! Love, Jules in Loxahatchee

  6. emmett says:

    I have these 7 or 8 on my stoma also with clear fluid when it bleeds should i be worried and what is the treatment

  7. Erica Rogers says:

    I too am glad I’m not the only one with these! Oddly mine is in the EXACT spot as the one in the picture, the biggest one that is. I thought it looked somewhat like a skin tag, which is basically what it is. With the stoma being so vascular I knew not to pick it, and I figured I’ve had mine for over 8 yrs and the stoma 11 or 12,(you forget after awhile) and it hadn’t gotten bigger, so I assumed it was safe, BUT….I do want to ask anyone who has had a “total proctocolectomy” w/no change for a reconnect, and has rectal/anal pain. 12 yrs later and I still feel like I get a colonoscopy or even hemorrhoid surgery every day. I also have extreme abdominal pain STILL, it feels like my intestines are kinking like a garden hose, which I was told is possible, especially since my small intestines have fallen into the void of my rectum. I’m 5′ and weigh about 120lbs, which is better than normal for me, but was hoping to find someone with similar problems and maybe even have the same body structure/size/age 43. I don’t know if I can leave my e-mail, but I really wouldn’t mind if I were contacted for matters pertaining to this, even if it’s a question back instead of an answer. I have the ya double o w/h in the middle and in front of the “at” sign is kendallerica5. Thanks stoma troopers! Erica

  8. Terry says:

    Thank you..I just noticed something white on my stoma as wel.. I freak out like many of you ..after having colon cancer when I was 32..it scares me so bad , I have NOT even been nack to the Dr. once I was in remission.. I have to get back just so scared! I also have big growths growing on my stoma ..could be granulated scar tissue..would love to have some friends to talk to …feel like I live in my own little world at times and so out of place. I’am now 44 and thought I would get use to it..well I have learned to go on BUT will NEVER get use to it! Stay healthy

  9. Molly says:

    What do you do if the keloid gets bigger?

    • Brian Greenberg says:

      I’m sorry to hear about your keloids getting bigger. I know how hard it can be to look down and see them, when you’d like to just see a healthy stoma. They do come and go and there truly isn’t much you can do about them. There are sprays and ointments which I was told help but when I tried them they couldn’t stick to the stoma so they never did anything. Sometimes certain medications for IBD do help. I’d talk to your doctor more about this situation and see how he thinks the can be best taken care of. In many instances a Wound and Care Nurese (WOCN) can be a great resource as well. Hope that this helps and please feel free to reach out at anytime.

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