Crohn's Disease & Dermatologic Concerns

Searching for and starting a new medication to treat IBD always comes with a hint of hesitation and distress. Personally, I was in the hospital for the umpteenth time when my doctor and I discussed switching to Remicade, a new biologic at the time.

Desperate for Crohn's symptom relief

I was so desperate for symptom relief, that honestly, the decision was made somewhat quickly. I was willing to say yes to a suggestion that held out some hope for less pain in my life, regardless of the possible side effects.

I knew that by taking any biologic, side effects were a possible reality.

I made that switch nearly four years ago, and outside of some experiences in the few days after each infusion (exhaustion, headaches, occasional joint pain) - I have been extremely lucky and grateful for my journey with Remicade.

A scary side effect

But something happened a few weeks ago that made me stop in my tracks, and I decided to share it here because I know that it’s really important for other community members to hear.

In early October, I found a lump in my breast.

It was a little larger than the size of a pea, but it was uncomfortable. It hurt when I pressed on it.

I immediately went to see my doctor, who did a visual exam and ordered imaging.

As she walked out of the room, she said “I’m so sorry, I can’t tell you not to worry yet.”

Stress as I waited for an appointment

When I got to my car, I called the number to schedule my breast ultrasound and mammogram, and I was told the first available “urgent” appointment was three weeks away. My heart sunk. How could I be forced to wonder if I was living with breast cancer for all that time?

I decided I needed a better option. I made several calls to other hospitals and doctors' offices and found myself an available appointment five days later. It was five days longer than I wanted to wait, but it seemed like the best option.

Sitting on edge for five days.

Warnings that come with certain medications

As I waited with the doom of cancer looming over me, I thanked heavens that I started doing self-breast exams in the shower at the end of my period each month, and that I was already a few years deep into my annual full-body skin checks with my dermatologist.

I thought about how the medications I take to manage my Crohn’s disease and preserve my quality of life (specifically Remicade and Azathioprine) come with some pretty intense warnings - like increasing the rates of certain types of cancer, including lymphoma, skin cancer, and breast cancer.

Making the choice between medication use and side effects

I asked myself if I’d consider stopping these medications because of this - and I knew, deep in my heart, that my answer was no. What a hard question, that we as patients often forget we are asking ourselves regularly. What a hard choice we are forced to make.

What breast imaging revealed.

Imaging showed that the lump I found was a cyst. Thank heavens. A cyst that at this time, needs no further treatment. One I must watch, in case it grows or changes, but one that will not currently turn into cancer.

This experience scared everything out of me. I’m 34 years old, a wife, a mother, a patient advocate, and a hundred other things, and for five very long days I didn’t know if any or all of that was going to end.

Today, I’m sharing this story to remind you that the medications IBD and chronic Illness patients take are incredible in the ways that they give us back our health and our freedom, but they also come with significant risks.

My recommendations to monitor risks: 

1. Be diligent with your annual skin checks - see a dermatologist alongside a primary care physician
2. Get a routine physical exam, including having your lymph nodes checked
3. Keep an eye on any skin spots that are new or changing
4. Complete a monthly self breast exam (females & males)
5. Reach out to your doctor with any new or worsening signs or symptoms of concern