One of the biggest hurdles in getting a diagnosis of inflammatory bowel disease (IBD) is first in understanding that the symptoms aren’t normal. They’re not from a virus or a parasitic infection — they go on for too long for it to be from those causes.
People with IBD sometimes normalize the symptoms. That is to say, we often learn to live with them. They become part of life and we quickly forget what it was like to not have pain or diarrhea.
Added on to all of this is the sheer embarrassment of discussing symptoms with someone else, even a doctor. It might get put off, especially for someone who doesn’t have a relationship with a trusted physician.
The last hurdle is being believed. That doesn’t seem like it should be a problem but it often is. Some people might take their symptoms to their doctor only to be told that they’re caused by irritable bowel syndrome (IBS), a virus, or hemorrhoids. Having gone through all the difficulty of understanding things aren’t normal, making an appointment, then talking about it, the problem still isn’t solved.
How to Navigate the Hurdles
I decided to talk to Dr Christina Ha, a gastroenterologist specialized in treating IBD and Rasheed Clarke, ulcerative colitis and j-pouch patient and author of Three Tablets Twice Daily about all of these roadblocks and how to overcome them. On Episode 107 of About IBD Podcast, we went over the problems involved with getting the right diagnosis.
One of the first things Dr Ha pointed out was that bloody stools shouldn’t be ignored. “I always tell people don’t disregard blood in your stool, especially if it’s consistent and persistent,” she said.
For Rasheed, when he went to a doctor about his symptoms, there seemed to be a focus on looking for something other than ulcerative colitis. They kept asking about his travel history, presumably because they were looking for an infection or food poisoning to be the cause of the symptoms. “All the questions…have I traveled, have I traveled, have I traveled? That’s no every time…No, I haven’t left the country the last several years, but okay,” he recalls.
Getting through these initial hiccups takes time and empowerment on the part of the patient. Dr Ha points out that “But it’s really important to, to press further and say, Well, you know, what, an infection really lasts as long couldn’t it be something else? And when should we look for those other options?”
How A Great Provider Works With Patients
She goes on to describe how she engages patients. “I try to start every conversation with ‘how can I help you today?’…and that’s the main thing is that we need to set a tone of saying, ‘We’re all in this together, we’re working as a team. And our goal at the end of the day is to help’.”
When Rasheed finally saw a gastroenterologist, he finally felt like he was on the right path. “So when you actually finally meet a doctor who gets it, then it becomes a lot easier to talk about what your day to day life is like, and how it’s being inhibited by the disease or by the symptoms…” he related.
When it came to being realistic about life with ulcerative colitis, Rasheed felt there were a few things he wished he had known sooner in the disease course. “No one had really prepared me for what would happen if the treatment failed,” he said. “Just knowing what could have been in store I think would have braced me a little bit more because when things did go wrong, and they did go wrong, I think it hit me a lot harder than if I had some sort of feeling that this might be a possibility.”
After hearing Rasheed’s story, Dr Ha said she likes to approach her patients with realism but also some hope. “I will say…a lot of people’s journey with ulcerative colitis is very challenging. And it’s fraught with a lot of ups and downs. And, you know, I always try to say, ‘Okay, let’s there’s room for optimism…let’s let’s do this’.”
These are heavy topics, but they’re important to discuss to help everyone, both patients and providers, understand the patient journey to getting a diagnosis of ulcerative colitis.
Learn More on About IBD Podcast Episode 107
At the end of the episode, we lighten up a bit with Rasheed telling a funny and embarrassing story about his ulcerative colitis, (what I called “the run with the runs”) and Dr Ha tells us about when she was on Jimmy Kimmel.
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