When you don’t know what’s wrong, what do you do?
By Kevin Whipps
It started with stomach cramps. First during the day, and then later, at night, keeping him from sleeping. He saw his doctor, was given a dose of ibuprofen and told to wait. A few weeks later, after a stressful trip to a wedding, things got worse, and by the time his plane hit the tarmac back home, he knew that he needed to see his doctor immediately.
Brian, an SEO specialist based in Arizona, is a slim man. He’s never been able to put on weight, and has always been one of those people that could eat whatever he wanted with no fear of reprisal. But now this stomach issue was starting to consume his life and he didn’t know what to do. His general practitioner wasn’t able to help, and the pain was constant. “The way to describe it,” Brian says, “is someone gnawing at your stomach with a knife.”
What Brian was experiencing at that moment was just the beginning of a long journey. One that would take him to several specialists along the way, and many failed attempts to diagnose him correctly. And, spoiler alert, he’s still not quite 100% yet, but what he’s learned in the process has been invaluable.
No Diagnosis, No Solution
The problem with Brian is one that over three million U.S. residents have diagnosed every year. IBS — irritable bowel syndrome — is an intestinal disorder that can cause symptoms such as gas, diarrhea and bloating, but it’s also something of a catch-all. That’s because not only are the symptoms rather varied, but the cause is unknown and triggers range from caffeine to gluten to stress. Meaning, if there’s a pain in your stomach, some doctors may chalk it up to IBS because there may be no definitive answer.
“Anyone who gets that diagnosis needs to figure out what’s really wrong,” Brian says.
In his case, the next logical option was to check for celiac disease. The condition has made the rounds in the news as of late, as it’s caused by an immune reaction to eating gluten, which is a protein found in bread products (and foods containing wheat, barley and rye). Many have used this as a reason to go gluten-free, claiming that it’s healthier for them long term. But celiac disease isn’t that common, and even though there are thousands of undiagnosed cases in the U.S., it’s still a rare condition. In Brian’s case, a blood test did show that he had celiac disease, but further tests would reveal that the blood work had produced a false positive. Still, just in case, Brian went gluten-free immediately.
Things, however, did not improve for Brian. He returned to his doctor two months later, worse than before. “It got to the point where I was having to go to the bathroom probably 15 times a day,” he says. “And that’s putting it lightly — some days it was worse.” His general practitioner suggested that he go see a specialist, and so that’s exactly what he did, where his gastroenterologist suggested a very expensive medication that cost him hundreds of dollars a month — and that was after his insurance coverage kicked in. It was horrible.
Things continued moving forward, but eventually, Brian elected to have a colonoscopy and endoscopy to see what was going on internally (the endoscopy covering the upper half of the gastrointestinal tract, the colonoscopy covering the lower). This time they had results, and the doctor laid it out to him straight. “He said, ‘You don’t have celiac’s disease, but you do have ulcerative colitis. Your colon is a mess.’”
Brian was told that he would have to take medication for the rest of his life, and to never get off of it. This would be the way he would live from here on out.
And to Brian, that just wasn’t acceptable.
Up to this point, Brian did what any other person would likely have done in his situation: he trusted his doctors and followed their suggestions, even when it worked to his detriment. But the one thing he didn’t do was something that would become critical.
Doctors are here to help, and if someone gets a quality doctor who knows what they’re doing, then they’re going to be just fine. But everyone should do their research and learn about what their doctor is telling them, so that they can make informed and educated decisions. Because if the patient doesn’t understand what the doctor is telling them, then what good is hearing the information in the first place? That, ultimately, was Brian’s big mistake, and one he would rectify.
With the initial diagnosis of IBS, Brian — and anyone in his position — should have done some research on what that means to them. Now, a year into the condition and thousands out of pocket, Brian started to dig deep and look for help. He learned more about what can lead to IBS, UC, and other conditions, and then found other people who had been through similar things. “I joined a Facebook Group that focuses on curing UC, Crohn’s, and celiac through diet.” That group alone taught him how to ask the right questions of his doctors, and what things he could do to help himself out. He essentially crowdsourced one aspect of his treatment.
Today, Brian is doing much better. He is living with UC and he’s adjusted his diet substantially to reflect the change in his digestive system. But he now has a positive outlook on where things are headed, and although he’s not at 100% yet, he’s closer than he’s been in a year.
Overall, it’s been a huge learning experience, both in IBS, UC, and how to properly handle things when getting a medical diagnosis. But now, he’s using his knowledge to help those with similar problems, both through groups online and being active in the community. He still has the road to full recovery ahead of him, but now, with that extra know-how behind him, he’s walking forward and strong.
So what are the right steps to take when discovering a problem with your body?
- Seek medical treatment from a qualified medical professional
- Research the diagnosis from the doctors and learn all you can about the condition and potential treatments
- Follow up with your doctor(s) using the new information at your disposal
- Find and join support groups in your area
Do you suffer from ulcerative colitis or other irritable bowel syndromes?