Skin Issues with an Ostomy

If you live with any kind of ostomy, you are probably no stranger to skin issues that can come along with it. I do want to preface this by saying that while needing to undergo ostomy surgery (colostomy or ileostomy) does occur with inflammatory bowel disease (IBD), that absolutely does not mean that is in store FOR YOU. This article is for those of you who are already living with one or who might be considering it.

For me, skin issues with my ostomy are the worst!

It can be so difficult to treat, cause my appliance not to last very long, creates pain and/or discomfort, etc.

Lets be honest here. No one wants to have an ostomy and given that, having skin irritation just kind of adds more negativity to something no one wants in the first place. I am, however, thankful I do live with an ileostomy because I would be dead without it. I am sure that is the case for a lot of you so please keep that in mind (even though it is so difficult!) when going through a rough patch with your skin.

So, what do you do if your ostomy appliance is wreaking havoc on your skin? Do you go to your GI? Do you make an appointment with the surgeon that performed your ostomy operation? Do you see an ostomy nurse? What about a dermatologist?

That is honestly up to you! If you feel more comfortable seeing one medical professional over the other then by all means, do that. I did want to share my experiences and personal preference in the hopes that it might help someone reading this who is in a tough place right now. Having said that, I want to reiterate that this decision is up to you and you alone. Also, our experiences are all unique to us... Which plays a huge role in who you might be more comfortable seeking help from.

Some thoughts I have on the topic are:

While you may be comfortable with your gastroenterologist (GI), skin issues are not their “thing.” Sure you may find one or two who have some knowledge of it but it isn’t their primary focus. The same is true for a colorectal surgeon. I do believe they have more experience than a GI but, it is still not their area of expertise. Most will refer you to either an ostomy nurse or a dermatologist.

My first step when things got bad was to see my surgeon. He diagnosed me with pyoderma gangrenosum which is an extra-intestinal disease that can be related to inflammatory bowel disease. It is an autoimmune skin disease that causes craters, sores and enormous pain. The treatment for it is similar to that of IBD - prednisone, biologics, immunosuppressive medication, etc.

While my surgeon was certainly not a stranger to skin irritation, he did refer me to a dermatologist for treatment.

Having said that, PG (pyoderma gangrenosum) is something entirely different than typical skin issues associated with having an ostomy.

Anyway, let's get back on track with the point of this article :)

In my experience, I prefer seeing a dermatologist over an ostomy nurse.

While I do believe ostomy nurses have more experience than a regular dermatologist, I find it is better for my mental health. I don’t want to talk about my ostomy and all of the details (who does?) and I have found dermatologists to be more focused on the skin itself than discussing anything else.

This is an emotional topic for me because when my skin is bad, I feel helpless. And that isn’t a feeling anyone wants to experience. On that note, if you do feel that way or it causes you to feel anxious/on edge a lot, worried about leaving the house, depressed, frustrated, etc - you are not alone! It would be weird, in my opinion, if you did not feel that way.

What do you guys think? Who has helped you with your skin issues as an ostomate? What differences have you noticed in the various medical professionals one might see for this problem? The more we share, the more we can help others in the IBD/ostomy community!