Through My Eyes: How a professional therapist copes with Crohn’s disease

 In our Through My Eyes series, we provide a platform for people to share how a particular medical condition has affected their life. By shining a spotlight on the physical and emotional, this series aims to raise awareness while providing practical advice and support to any readers who may be experiencing something similar.

Renika was initially diagnosed with ulcerative colitis (UC), another form of IBD. She began treatment with a biologic medication that required her to visit a facility every 4 weeks for an infusion. This course of treatment lasted for about 9 months, but then Renika developed resistance to the medication.

Several years later, after trying three different biologic medications without significant relief, Renika was hospitalized. She lost nearly 20 pounds in a month and felt like she was “really deteriorating.” That’s when Renika learned she actually had Crohn’s disease.

This new diagnosis also included cutaneous manifestations of Crohn’s disease. Cutaneous Crohn’s diseaseTrusted Source may appear in the form of fissuresTrusted Source, which are small tears in the anus that may cause pain or bleeding, or fistulas, which are atypical connections between the intestines and another part of the body, usually the skin. Eventually, Renika underwent ostomy surgeryTrusted Source due to the severity of her symptoms.

As Renika learned about her condition, she discovered other people on social media who shared some of her experiences. A friend suggested Renika name her Instagram handle @crohns_and_sexxy as she had both Crohn’s disease and style. Eventually, she received invitations to different patient groups and platforms. She would share a bit more each time she met someone new.

On sharing her story, Renika says: “The more I kept it [my condition] a secret, the sicker I felt. The more I shared, the better I felt. That was part of my healing.”

Renika once called herself a Crohn’s survivor, but now she considers herself a Crohn’s thriver.

Medical News Today spoke with Renika about her coping strategies and advice for others who may find it difficult to manage Crohn’s disease.

This interview has been edited for length, brevity, and clarity.

What are some practices that help you cope with Crohn’s?

My self-care journey has allowed me to spend a lot of time with myself. I take myself out on dates. Real dates, like nice dinners and movies. I put on make-up and dress in my favorite clothes.

But I also make sure I have days when I’m just at home, focusing only on what’s right in front of me. I don’t pay attention to the outside world. I don’t let anything in that could possibly stress me out until I have the emotional availability to deal with it.

When I can get into a good head space, I can emotionally regulate myself, and then the stress doesn’t completely ruin my day. Stress and anxiety can trigger my GI [gastrointestinal] symptoms, and I can end up in the hospital, so I have to take care of myself.

I assess the situation to see if it’s truly a big deal. For me, going to the hospital is a big deal. Some random stressor? Not so much. Once I’ve determined that a situation is not “hospital-worthy,” then I don’t have to stress that much.

I also practice affirmations, speaking kindly to myself. I tell myself it’s OK if I don’t go out, I can just stay at home and watch TV. The sun may be shining on that particular day, but the sun will shine on other days, too.

How do you think your profession helps you?

I think it helps that I’m trained as a therapist. I know how to use coping strategies, breathing techniques, de-escalate situations, etc. It puts me at an advantage.

I’m also a researcher by nature. I look things up. I know what kinds of medications I can take.

My profession has given me the opportunity to improve my mental health and control my stress. I can use my skills to be less stressed.

Also, talking with my clients has helped me process my own stuff. I had a client who had a history of homelessness with substance misuse and also had substantial GI challenges. One day I asked: “Do you have Crohn’s?” and they answered, “How do you know what it is?” I found myself having a soft spot for them because that could have been me.

My client told me that no one had ever talked to them the way I did and that each day, I gave them a little more hope. What they didn’t know was that they also gave me hope.

My profession gives me tons of perspective. Every day. I’m always teaching and learning.

How were you able to accept your ostomy? What would you tell others who are having a difficult time?

This is still a sensitive area for me. I was talking with a young woman who I mentor about this. I told her the moment I realized I made the right decision for myself was when my current doctor said I will do whatever you want me to do, but if I do X, Y, Z, your body might not function the same way again. Basically, my doctor explained that I could get a reversal of the ostomyTrusted Source, but my quality of life wouldn’t be what it was with the ostomy.

It’s been 3 years, and I still hesitate to talk about it because of the stigma and judgment. But then, when I think about it, I remember I’m still sexy, stylish, etc.

This decision should not be made in the blink of an eye, but if you’re ready, it’s worth it. Now, I have hardly any GI issues at all. I do still take a biologic medication, but my healthcare team makes sure I have what I need and I’m doing well.

What is your advice to folks who find it difficult to cope with their condition?

Set boundaries. It’s the best way to advocate for yourself.

For example, at work, you can go to HR [human resources] and ask for formal accommodations. Or you can be more informal and say something like, you may have noticed I haven’t been myself, but I have something going on. I may need to take breaks, but I’m still giving 100%.

When I was at my sickest, I didn’t feel present. I was present for others but not for myself. I would take off work and be that person who would say, “I can take care of this and this,” but then I would make myself sicker. My health is now a top priority. That is my nonnegotiable.

Ultimately, you cannot be everybody’s everything and have nothing for yourself.

Source - Medical News Today