Patient InsiderHey, I'mTinaLiving with IBD has its challenges. Here’s how I cope.
My diagnosis was missed
I can recall symptoms as far back as eight years old. After college, I was losing a lot of weight. Becoming anemic. My doctor wanted to do a colonoscopy. I have a family history of colorectal cancer so I went ahead. I didn’t hear anything more.
Months later, I was getting off the subway and almost collapsed. I had diarrhea and blood in my stool. At the hospital, I finally saw my colonoscopy results: ulcerative colitis. No one told me! My doctor scoped me again – the disease had gotten worse. I was officially diagnosed with Crohn's disease at 22.
“This is still a problem today: patients with missed diagnoses or delayed diagnoses.”
Trying to be a typical 20-something
I was busy working to excel in my career. Dating. Going out with friends. Honestly, I wasn't doing enough to educate myself – and my disease was rapidly progressing.
My condition went from mild to severe over a two-year period. Trying to wrap my head around needing to get my colon removed at the age of 24 was like, "Oh my God, what are you asking me? You're telling me I need an ostomy bag?" It was too much too soon for myself, my family, and my boyfriend (now husband) to accept.
I was down to 85 pounds and I had a tube in my arm feeding me the nutrition I needed. That's when I realized that I had to do something. That I needed to understand this disease – because if I didn’t, my life was at stake. At the time, I didn't know about any advanced therapies, like biologics, but I wish I had.
When it came to my care, I had to get in the driver’s seat and partner with my doctor. What did that mean? I listened to everything that was presented to me. But then I took that information back home, thought about it, and did my own research. I talked to other patients who lived with this disease. And then I worked together with my doctor to come up with the right decisions for me.
“I’m not allowing Crohn’s to define me, even though I have to live within certain limitations of it.”
Inflammatory bowel disease can be challenging to manage.
Here’s something I do that helps me feel more in control.
I create a digital file of all of my test results – do you?
Finding my sense of self
This disease can take so much out of a person's self-image. We may gain or lose weight. Our hair might turn white. Or we may lose our hair due to malnourishment. All sorts of things can happen that can take a toll on us.
What’s helped improve my confidence? Reinventing myself after each major flare-up or surgery. If I just got off prednisone and put on a ton of weight, I would buy myself bigger pants or tops that looked cute. I’d try a brand-new hairstyle or experiment with green or purple eyeliner. I’d do my eyebrows differently. I’ve gone from thin to thick to thin. Doing things that were different helped me feel beautiful again.
I live with a permanent ileostomy. I will put on lacy Ostomysecrets, a wrap over my ostomy, for those intimate moments. With this disease, we have to keep reinventing ourselves. And I think it's important for us to continue to feel sexy or attractive in spite of what our bowels might be doing.
That’s what I would tell anyone who feels embarrassed or ashamed of their diagnosis or symptoms.
We all go to the bathroom – this is a natural part of life. And it’s something that can affect us emotionally. Just because we have a disease that may make us go to the bathroom a little bit more or a little bit differently doesn’t mean that it’s something we should be ashamed of.
We are just as human as everyone else. It's just that our digestive system has a mind of its own.