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