To My 12-Year-Old Self on the Day of My Crohn’s Disease Diagnosis

Today you will be introduced to what will become your lifelong partner, Crohn’s disease. You have never heard of this disease, but your gastrointestinal (GI) pediatrician will explain it to you this afternoon when he tells you about your diagnosis.

After all the testing you’ve been through, the pain and sickness you’ve endured up to this tender age of 12, the diagnosis will be a bittersweet announcement. They finally figured out what is wrong and they can help make it better. Unfortunately, it won’t get too much easier for you. Yes, the doctors will start you on high doses of steroids since the treatment options for Crohn’s disease are minimal at this time in 1984. However, there are difficult side effects to steroids especially at the high dosage you will have to be on for quite a while. As a 12-year-old, adolescence is already a difficult time, especially for young girls like you trying to adjust to the natural changes of their bodies. You’re about to get some additional obstacles that you’re going to have to learn how to cope with: an incurable disease and the embarrassing side effects of both the disease and the steroids.

Over the next 30-plus years, more treatments will become available to you, none without difficult side effects you’ll have to get used to and learn to live with. There will be some medications that work better than others. There will be some medications that will work wonders until your body becomes immune to them, forcing you to try yet another treatment or cocktail of several treatments.

Your GI pediatrician is now here to explain a few things to you. Try to stay calm.

This is what you learn:

1. He is explaining that all the tests you’ve gone through, the upper and lower GI series, the twice daily blood work, the endoscopy, the colonoscopy, the bone marrow test, etc. confirm Crohn’s disease with the possibility of cancerous lymph nodes. Oh my goodness, you just heard the word “cancer” and your mind is spinning. You want to cry, but you see the horrified look in your parents’ eyes and realize you have to stay strong, so you do. You continue listening to your GI.

2. He is explaining that Crohn’s disease is chronic inflammation of the intestines, but can include ulcers and fistulas and can affect the entire digestive tract from the mouth to the anus, and that, while you don’t know this now, will be the path of your disease in the years to come.

3. He is explaining that he has scheduled you for surgery to resect the diseased 7 inches of your small intestines (stay strong, this is the first of many more surgeries to come over the years — you’ve got this, this one will set the path for you). The surgeons will also remove the three potentially cancerous lymph nodes (remind me to look up what a lymph node is), which turn out to not be cancerous (huge sigh of relief) and the surgeons will remove your appendix to get it out of the way. You will have scars, but own them. Remember that scars build character; they tell part of your overall story.

4. Your doctor is explaining the steroid treatment that will start after surgery.

5. Your doctor is explaining that you will continue to be fed via the total parenteral nutrition (TPN) line inserted under your collarbone to rest your gut throughout the remainder of your total seven-week hospital stay. You’re OK and you can still have hard candy – yum!

Today is your turning point. You have just been bombarded with a lot of information about how your life, as you know it, will never be the same. How you adjust is completely up to you.

You have been diagnosed with a disease that is not very well known. People won’t want to talk about it openly given the nature of the body parts involved, so sometimes you might feel alone. You are going to feel embarrassed and humiliated as the disease takes control of your body on some days. You are still going to experience excruciating pain. You are going to be so exhausted on some days you won’t have the energy to get out of bed, take a shower, feed yourself, work or take yourself to the doctor.

You have two choices:

1. You can feel sorry for yourself, cry woe-is-me all your life and curl up on the floor and live in silence, or…

2. You can embrace this difficult change and this difficult disease in a manner that you will never let it define you or get the best of you. You can use your experience with Crohn’s disease to educate others, to support others and to rock your life with the spirit you had prior to be admitting to Johns Hopkins for all of the testing, diagnosis, and surgery. Embrace the days you feel down and alone and upset and angry and frustrated. These are natural feelings and you owe it to yourself to acknowledge these phases. You don’t know this just yet, but you will end up managing all of this in a very productive and classy manner, always displaying your smile and strength and making a difference for many others who suffer with this disease because you don’t ever want your diagnosis to be in vain.

I am so glad I am me, disease and all!

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.