Patient Perspective on Irritable Bowel Syndrome with Diarrhea (IBS-D)
Presented by Lisa Strykowski
Around 1999, when Lisa was 19 years old, she started experiencing IBS-D symptoms, which included diarrhea, nausea, urgency, cramping, bloating, tiredness, and migraines. Her gut would flare up a few times a week, mostly in the mornings. Her 15-minute commute to work would include 1-2 bathroom stops along the way.
Around the age of 22, Lisa finally mentioned her frequent stomach aches to her primary care provider. She was told that she probably “just had IBS” or “nerves that went to her gut” and that taking over-the-counter anti-diarrheal medication (loperamide) as needed for her symptoms was OK. Blood work was done, and she tested negative for Celiac (testing was only offered as a blood test at the time.) Lisa started taking over-the-counter medications as needed, as well as a prescription for zolmitriptan for her migraines.
At the age of 27, 8 years after her symptoms started, Lisa was taking 4-6mg of loperamide almost daily. She finally reached out again to her primary care, since the amount of medication she was taking to control her symptoms seemed excessive. Again, she tested negative for Celiac, and Lisa was finally referred to a gastroenterologist, who, after a colonoscopy, also confirmed that her symptoms were “just IBS-D”.
At the age of 30, Lisa had her gallbladder removed, which helped to reduce a lot of the stomach pain that she had suffered from over the years. (A gallstone the size of a golf ball was discovered during routine pregnancy ultrasound 5 years earlier.) She was still taking loperamide frequently, and when Lisa was 32, she had her first case of acid reflux. She was referred to an ENT who was the first medical professional to suggest that, based on her symptoms and medication, she most likely had a food allergy or sensitivity. After visiting with an allergist, they were the first to suggest that, even with a negative blood test for Celiac, she could still have a sensitivity to gluten and suggested giving it up for a bit. Within days of giving up gluten, Lisa’s gut health improved. She wasn’t even experiencing migraines, and she no longer needed the zolmitriptan. Lisa would still keep loperamide on-hand for occasional IBS flare-ups.
Around the age of 35, Lisa started to develop an intolerance to the loperamide. She would experience severe stomach cramping and constipation after taking the medication. She would try to avoid taking it as much as possible, and try to take the smallest dose possible, but she eventually had to stop. By this time, her IBS-D had flared-up with the worst symptoms she had ever experienced. Lisa would go to the bathroom before she left for work, and would race to work to use the bathroom again within 15 minutes. She had to plan her entire day around a bathroom. She became afraid to leave the house, as there was one time she didn’t make it home in time to get to the bathroom.
Lisa reached out to her primary care after about 2 months of these issues. She was told not to take any loperamide, to let “whatever needed to come out come out”. A new medication was available for IBS-D, but Lisa couldn’t take it because she no longer had a gallbladder, and pancreatitis would occur. She was referred to the gastroenterologist that she saw originally for her colonoscopy. Lisa was prescribed amitriptyline, to correct what could be a potential brain-gut misfire. The medication helped tremendously, at first. Eventually, she began to experience panic attacks from the medication. She weaned herself off of the medication and she started looking for a new approach, this time on her own, to find the cause of her IBS-D and stop treating just the symptoms.
After searching online, Lisa found the FODMAP diet, and realized that, other than eliminating gluten from her diet, no one had suggested looking at her nutrition. After completing an elimination and reintroduction, Lisa found that her IBS was also triggered by legumes. In addition to avoiding gluten, she was now avoiding beans, peanuts, chickpeas, etc. While Lisa has been fairly successful in managing most of her symptoms with nutrition for the last 4 years by avoiding these foods, she still experiences occasional and mild flare-ups, gas, bloating and/or urgency.