Health Care, Love

Here’s what it’s like when your digestive system runs your life

How does a bathrooom break every two hours sound?

I’m part of a very special ‘club’ in which my digestive system fights and fails me.

Initiation into this ‘club’ began when I returned from visiting Kashmir when I was around 12. The corners of my mouth started to blister. Then, I developed sore gums, stomach pains, and started going to the bathroom constantly. For a while, my doctors did not know what was wrong with me.

Colonoscopies, biopsies, and MRIs became a part of my life for nearly three years as I suffered endless tests to determine what was causing the symptoms. In that time I had no diagnosis. I was leaving class to go to the bathroom at least twice in an hour. Going through high school being teased for constant (and long) bathroom breaks destroyed me emotionally.

Then, the physical changes began. My lips grew slightly. My classmates started to call me “Botox Face” as a result. What was worse, was that I was told that there was no cure for it. 

And then, at 15, I finally got a diagnosis – Crohn’s Disease.

Crohn’s Disease falls under the Inflammatory Bowel Disease spectrum (IBD). It’s a long-term condition that causes inflammation in the lining of the digestive system, which runs from the mouth to the intestines. Symptoms are different for everyone but the most common include diarrhea, fatigue, and weight loss. Stomach cramps, constant nausea, and uncontrollable bowel movements can also occur.

There is no cure for IBD, but treatments range from medicine (immunosuppressants and steroids) to surgery, depending on the severity of the condition.

Having Crohn’s Disease means many other things too, including a terrible immune system (flu vaccinations are recommended, regardless of whether or not you are prescribed immunosuppressants, and the common cold can last for weeks), a restrictive diet (this is different for everyone but trigger foods that can further inflame the digestive system should be avoided), and the occasional use of laxatives and antimotility medicine.

The best case scenario? You manage to keep your symptoms under control through medicine, healthy diet and exercise and don’t require medical intervention.

The worst case scenario? Your symptoms are so severe that they cause damage to your intestines. That damage can cause them to stop absorbing nutrients or properly transporting waste outside of the body. Some people require the use of a stoma, which is a surgical opening on the front of your abdomen, allowing feces or urine to collect in a pouch on the outside of your body.

My form of Crohn’s Disease is very mild to the point where I can take medication only when I am having symptoms. I can go days to weeks without having a flare up (my longest was around six weeks).

But there are some symptom that will always be there that I have learned to live with. For example, I have agonizing stomach cramps in the mornings which linger for 30-45 minutes. No matter what time I wake up, the pain is always there. I’m always late because usually, the pain results in going to the bathroom at least three times within an hour. My current employers are very understanding but my previous ones – not so much.

I also have to take vitamins and iron supplements. My body doesn’t absorb nutrients well due to the inflamed lining in my intestines.  I once had iron levels so dangerously low that supplements didn’t work. I had to get an emergency iron transfusion as a result.

IBD also causes symptoms in other parts of my digestive system. I have blisters on my inner lips, and sore gums all the time. This means I am also constantly at the dentist.

Everyone’s struggles with this disease are different – this is just my story.

I’ve found that struggling with an uncommon ailment means that sometimes people don’t understand what you’re going through. You have to constantly explain why you take a long time in the bathroom (or why you go three times an hour), why you’re late in the morning, why you have agonizing stomach pains, and why you can’t eat certain foods. It’s a constant battle of trying to understand what is happening to yourself and also having to explain it to others.

Suffering from IBD can be very embarrassing for some people. Having to talk about your bowels is not exactly the most ideal conversation, especially when you also have to explain everything that it entails.

However, the more visible and open that people who struggle with IBD are, the more other people will learn and understand about it too.

Living with IBD isn’t a death sentence – it is about maintaining a healthy diet and lifestyle and being aware of your triggers. I’ve lived with it for around seven years. Sometimes it gets hard, but the good news is that the good days, far outnumber the bad ones.