My IBS Journey Part III
“I’ll Go to the ER After the Game”
One day I woke up not feeling well. I was barely able to eat breakfast and by lunch I felt dizzy and nauseous. A short time later, I developed a painful, burning sensation in my side – it felt like one of my organs was double the size.
After relaxing at home, I did start to feel better and thought the worst was behind me. The next day, I had plans to attend an NC State Basketball game that my boyfriend was dying to see. We had tickets and lunch plans, so I was desperate to make the day enjoyable despite waking up in pain.
At lunch, I could barely eat. I spent most of the time trying not to feel car sick, despite sitting in a restaurant. The pain in my side was so bad, my boyfriend almost had to carry me to the stadium. I could barely walk. I called my mom in a panic. What could be wrong?! She immediately consulted the family, as always. A round of diagnoses came my way in minutes: gallbladder was the consensus this time even though the pain was on the wrong side. My mom begged me to go to Urgent Care. My boyfriend begged me to go to Urgent Care. I walked it off. We went to the game with the consensus that if I didn’t feel well after, we’d go to the hospital. At that point, it had been 24 hours and I was miserable.
A Series of Expensive Events
At the ER, they did a few tests and nothing life threatening could be confirmed. They gave me a GI cocktail, basically to coat my intestines, and sent me on my way. It didn't help and I had to wait to see my GP the following Monday.
Now, while I was focused on the abdominal pain, a rash had started to spread from my arm to my hands and face. None of the doctors I saw thought the two were related, but it caused me even more concern. My GP confirmed I was having an allergic reaction to something. Some steroids cleared the rash up, but my stomach pain was still a mystery. Onto the GI doctor I went. Then to the allergy doctor. A skin test, blood test, endoscopy, and two biopsies later and I still had no answers and no relief.
My GI doctor printed an anatomical diagram and scribbled various possible conditions and talked through each. He told me we'd just start marking each condition off the list until we figured out what was wrong. In case you didn't know, this is how IBS is usually diagnosed. There is no test for it. The "test" is to literally rule out everything else. And what's tricky is the symptoms associated with IBS can fit numerous other ailments and they vary from person to person.
By the way, I told every single doctor I met with that I was diagnosed with IBS when I was 15. However, I had never, ever felt like this in my life. So, we were all convinced something worse was going on.
11 Months and Counting
Yes, I spent eleven months and thousands of dollars feeling like every test was going to give me the answers I so desperately needed. I hadn’t been able to work out the entire time; it was a struggle to sit, let alone take my dog on a walk. Every time I ate anything I would feel sick. I constantly carried anti-nausea medicine and had been taking heartburn medication regularly for months with barely any effect. I ate Tums for fun.
My GI doc was able to rule out celiac, gastritis, food allergies, H. pylori, gallbladder dysfunction/stones/sludge, pancreatitis, kidney issues, liver issues (they even listened to the vein in my liver to make sure it sounded normal!), tumors, bile duct leaks, and SIBO. I had ultrasounds, a breath test, HIDA scans, an MRI… for all intents and purposes I was completely healthy. Not only did my symptoms continue with no relief, but I was emotionally drained. My body was also exhausted.
But, IBS was the last thing on our list and after ruling out pretty much everything else, I felt confident this was the right diagnosis. I’d had plenty of time to research IBS symptoms and really started to connect the dots. Even though I was eating healthy, a lot of healthy foods are actually IBS triggers.
A MAP to Healing
With medical bills piling up, I wasn’t sure how to start down the path of healing without racking up even more debt. Luckily, I discovered my benefits at work cover unlimited visits to a Nutritionist. I finally felt like things were going my way. This is where my Low FODMAP journey begins. I have spent the past few months learning how to eat on a Low FODMAP diet and figuring out what foods are safe, which ones are triggers, and how much of certain foods and I can and cannot eat. It is hard. So very hard. But it’s worth it because all my symptoms are virtually gone. There are days where I eat trigger foods, either by accident or to test something to see how safe it is and my symptoms will pop up.
I’ve started this blog to make this journey a little less hard. Less hard for me to talk about and a way to document my successes in case it helps someone else. The hardest part for me is eating out, identifying safe, pre-packaged foods, and finding ways to turn limited options into satisfying dishes. My boyfriend has been super supportive this entire time. Not once has he complained about my complaining. Instead he’s found creative ways to turn bland, limited food options into masterpiece dishes.
This difficult journey feels possible knowing I don’t have to go it alone.