An Introduction to Life with IBS (2024)

In case you weren't aware of my invisible disability, I have Irritable Bowel Syndrome (IBS). IBS is a chronic illness that includes symptoms of bloating, stomach pain, cramping, and issues with going to the bathroom, making it a not-so-conversation-friendly topic to bring up in most social situations. For me, and I'm sure many other sufferers from this condition, it took several months to diagnose and start effectively treating partially because I developed my first symptoms during the lockdown in 2020 and because symptoms can be inconsistent and hard to find a root cause for. This last week, I indulged in a family member's gift of deep dish pizza and have been paying the price since the day after, so I thought I'd spend this blog going over this chronic illness and my experience with it in the last 4-ish years.

2020

2020 was a special kind of hell for me. I was anxious, depressed, verbally abused at work, stalked, on new medication, and in a constant state of worry due to the Covid-19 Pandemic. My support at the time felt minimal. During March, April, and May, I was exhibiting new health problems I didn't understand, including intense constant stomach pain, hours in the bathroom, hair loss, and a 30-pound weight loss in less than 2 months with no change in diet or workout routine. I was nauseous all the time whether I ate or starved myself. I was physically exhausted from the pain and nausea. It sucked.

I noticed it interfering with my life when lockdown ended, too. Friends thought I was faking the constant pain and said I was difficult to hang out with because of sudden overwhelming cramp attacks. I was afraid to eat. I was afraid to not eat. I was afraid to go out for both Covid and IBS pain. I felt it slowly take over my life in a matter of months.

I visited the school nurse who tested me for SIBO and other common infections by making me drink this sugary sour drink and breathe into a bag. The results were negative and I was told to take omeprazole, which helped very little. With the agenda that wasted away from no daily activities, I began using it as a journal to track what food I ate, how much I ate, when I ate it, when I was in pain, and when I had other GI symptoms. When I finally saw a doctor in person in late 2020, he changed my anxiety medications thinking this was a rare side effect, but it didn't alleviate symptoms. I finally saw a specialist in November. They made me play shit scientist (collect your crap and stir in some stuff to test it for Celiac Disease, Irritable Bowel Disease (IBD), and other diagnoses. The results were all negative. My 4-month food and pain journal was left unchecked by the nurse practitioner. She told me I had IBS and instructed me to go on a low FODMAP diet and it would fix things for me.

This very strict diet gets rids of irritants like dairy and excess fructans, then slowly adds the irritants back into the diet over several weeks to see what causes increased IBS symptoms. It was some of the worst 8 weeks of my life. As I added oligosaccharides back into my diet by Christmas 2020, I realized those were my main irritants. Oligosaccharides are sugars that appear in bulky vegetables like broccoli and onion, sugary fruits like watermelon, regularly processed beans, and my biggest irritant: wheat products. To this day, I maintain a gluten-free diet even though gluten is a protein in wheat, not a sugar, but if I was more honest I'm not really gluten-free. I'm low-oligosaccharide. It's just most difficult to tell every person what those sugars are and what they're in. People know gluten-free nowadays. It's easier on me.

2021

Since I was limited to resources in Bemidji, I sought the help of a naturalist doctor in the 40-minute-away town of Walker, MN. Two others had recommended her for chronic illness, and while it wasn't my typical person to turn to, I was willing to try anything. Even on my gluten-free diet, I still had horrible pain and GI symptoms. I gained back the weight and my hair grew back normal-ish, but the root symptoms remained. I was put on dicyclomine to help with the pain, but it was often hit or miss.

In fall of 2021, I moved to a larger city and decided to see a different doctor and then GI specialist. I was given blood tests I hadn't been given before, and got to play shit scientist again (yay). My blood results were off. My ESR and CRP levels in my blood were high, suggesting inflammation somewhere in the body (obviously in the GI tract due to my cramps). I had low iron, slight anemia, and some other barely off levels of other parts of my blood. My white blood cell count was also pretty high but not high enough to be something like Cancer. My specialist suggested my first colonoscopy the upcoming January to see if there might be other issues my tests couldn't answer.

2022

Colonoscopy prep absolutely sucks! If you haven't had one yet, you go to the pharmacy and are given this huge jug with basically laxatives in it. You have to finish this jug in one night and not eat that day to make sure the colon is clean enough for the journey of the scope! The laxatives made me so nauseous I started throwing up about half-way through the jug that night. I tried to make it a shitty drinking game with Disney Channel classics like Camp Rock, Lemonade Mouth, and Jump In! I threw up twice. It's a hard life when you're purging from both ends of your body. I only got through 75% of the jug before the morning colonoscopy. I'm thankful it was enough for the procedure to happen.

They put me to sleep and took samples from my colon to check for IBD, UC, or colon cancer. About 2 weeks later, the results came back that I had none of the above, but I had some redness and scarring in my colon. That's where I was inflamed (which was no secret to me). The specialist taught me which probiotics to take, prescribed me psyllium husk, iron, and a continued low-oligosaccharide diet. She even referred me to a physical therapist for potential and eventually confirmed pelvic floor dysfunction. That's right folks, I am clinically tight! I welcome all jokes as I continue writing about my experience in both serious and farcical contexts.

Even despite all these interventions, I still had some painful flare ups. I ended up in the hospital during finals that fall. It was still misery coming to terms that this was not something I could control.

2023 onwards

I continued my treatments and was hospitalized again during finals in the spring of 2023. This time in addition to my pain, I lost a lot of blood. The toilet was more blood than water. I drove to the hospital and was diagnosed with Colitis. I was given pain medications and took it easy for the day... okay, well I had a trip to Bemidji planned but otherwise took it easy on the food until the pain and nausea subsided. What bothered me most was how I had been great at my diet in the month leading up to this especially vile attack on my colon. I was never told if it was temporary or something that could happen again.

I also tried to get my fallopian tubes removed that summer, but twice before the surgery my blood tests came back with high white blood cell count, CRP, ESR, and ALT, and AST. My liver was mad, my immune system was mad, and I was mad. I couldn't have surgery with complications like these so I had to wait 4 months. As I think about future procedures I might need including Lasik, ablation, my fake teeth inserts, and other future colon procedures, I worry that my blood tests will never be quite right due to vitamin deficiencies caused by my GI problems. Am I always to be at risk? Will my healing never be quite the expected? Sigh...

Here I am in 2024, and one deep dish pizza has fucked me over for several days now. My diet of rice, miso soup, and crackers is less than filling. My stomach is always mad, whether I feed or starve it. The journey continues. And I am still in pain.

Lessons learned? Having an invisible disability gets rid of fake friends real quick. Always look for the bathroom when you're out in public. Never leave the house without pain medication and prescriptions in case of GI emergencies. Learning how to cook low-oligosaccharide versions of my favorite foods gives me life. Also, never underestimate the power of a good specialist and physical therapist who listen to you and individualize your treatment. Carry on!