So you find yourself diagnosed with inflammatory bowel disease (IBD). Now what?!
It can be an incredibly isolating, scary, frustrating and overwhelming position to be. You may feel like you have failed your body or your body has failed you in some way. Neither can be further from the truth.
And what doesn’t help is our current healthcare system is set up in a way where even if a physician wanted to dedicate more time in a clinic visit to make sure that you leave their office feeling educated and empowered, they sometimes can’t.
Thankfully, with the internet and social media, access to information in other places is very possible. You just have to know where to find it, which is why I wanted to write this article. As the Director of the Inflammatory Bowel Disease (IBD) clinic for my hospital for the last five years, many of my patients have expressed all the feelings I mentioned and I want to make sure that your unanswered questions get answered. And I will start with the basics.
So how is Crohn’s disease or ulcerative colitis diagnosed?
This may come as a surprise, but it’s not that clear cut of an answer. The diagnosis is not based on one test result alone. It’s a combination of your symptoms, duration of symptoms, colonoscopy with biopsies (which aren’t 100% confirmatory of the diagnosis, but help rule out other causes), possibly an esophagogastroduodenoscopy (EGD or upper endoscopy), imaging such as a CT scan or MRI, and laboratory testing. It is typically, this combination of “clues” that when put together tell a story which leads to the diagnosis.
This may sound incredibly easy and clear cut but one thing that I always try to tell my patients is that for inflammatory bowel disease there is no one test that can prove without a doubt that you actually have inflammatory bowel disease. Rather, it’s like putting a puzzle together and making sure all the puzzle pieces fit and if most of the puzzle pieces fit, then we have a diagnosis. It is not as black and white as Crohn’s disease versus ulcerative colitis. There is a whole host and range of clues we use to describe IBD, which we call the “phenotype” and it matters when it comes to certain treatments but more importantly when potential surgery is on the table.
Why don’t my genetic tests make sense?
There are a few “genetic tests” out there that are used to evaluate for inflammatory bowel disease, but I want you to know that these tests are not validated (proven), are typically not covered by insurance and still cannot say with certainty that you even have the condition, which is why your doctor may not even offer this to you. So if they don’t offer genetic testing it isn’t because they are withholding something but honestly are saving you a likely hefty lab bill. It can be used in certain scenarios and your physician would only order this test if needed, which again is rare for most patients.
The first question you want to ask your doctor is what is my diagnosis exactly?
So, there is ulcerative colitis which can range from involvement of just the rectum, the left side of your colon or to the whole colon (pancolitis or extensive colitis). Defining the extent of disease is incredibly important at the time of diagnosis because this can define your risk of colon cancer and determine when you may be due for colon cancer surveillance or colonoscopies to make sure that everything looks good.
When it comes to Crohn’s disease, again, what is involved or inflamed matters. It can be defined by the upper digestive tract, small intestine or colon. There are also some other descriptors such as penetrating disease such as a fistula, abscess and/or if there is perianal involvement. With Crohn’s disease, there can be other manifestations of other organs such as skin involvement which is rare, but can happen. This is a brief overview, but you get the idea. All of these descriptors help define or characterize your individual type of disease which helps in the treatment decisions, potential risk of complications, cancer risk, and surgical options if needed.
What if my doctor still isn’t sure!?
There is also something else to bear in mind. There is even an entity called indeterminate colitis when in fact no matter all the testing that is done your doctor still may not be sure how to characterize your IBD, Crohn’s disease or ulcerative colitis. And here’s the thing, this does not mean that your doctor is incompetent. On the contrary, this shows they are being thoughtful in your care. It is a very good thing to label IBD as indeterminate colitis because you don’t want a doctor to commit to a diagnosis when they aren’t certain about the diagnosis, because when it comes to inflammatory bowel disease how you define things up front is everything. And noting indeterminate colitis as a diagnosis puts a red flag in your chart notifying people to pay attention to other clues that may help hone in on the diagnosis in the future rather than treating you with blinders on and not open to the possibility of another diagnosis.
Upwards of 10-15% of patients have their diagnosis mischaracterized, misdiagnosed or their disease evolves such that the diagnosis changes over the years. This can happen. And it’s important to just recognize the limitations of medicine. We don’t have perfect tests. And you also have to advocate for yourself when things don’t feel right.
Where do you go from here?
Now that you have a diagnosis, the next question is where do you go from here?
It’s important to understand that now that you have a diagnosis or even indeterminate colitis to shift your mindset to realizing that you are now empowered with information and many treatment options. The field of inflammatory bowel disease is a wonderfully evolving field of medicine where there is a ton of research heading in a direction towards more individualized medicine. Meaning customized just for YOU. We’re not there quite yet but I know we will be. And for that, I want you to feel hopeful for the future of medicine.
Again, with a diagnosis, treatment options are next.
Treatment goals begin with getting you feeling better. We call this clinical remission. The next goal is endoscopic remission meaning how does your digestive tract look endoscopically or during your colonoscopy, CT scans or MRIs. Right now, treatment goals are set to achieving both clinical and endoscopic remission. Eventually, we will likely be in a place where we have histologic remission meaning the biopsies that we do while on treatment show no active inflammation. And here’s the deal, remission for your physician may look entirely different than what remission may look like for you. And there is so much more than just treating the inflammatory bowel disease at play including your mindset, lifestyle, and other medical conditions you might have such as irritable bowel syndrome, anxiety, depression, celiac disease, and more.
Why communicating your goals with your doctor is more important than you think!
This is why you have to communicate with your doctor what exactly your goals in life are. Is it to get back to swimming, working, school, traveling the world, etc? These factors are incredibly important in deciding what medication choice your doctor will make and helpful in using it as a benchmark for knowing what “treatment success” looks like. If you don’t voice exactly what your goals are you can be left feeling regretful or unheard.
This is critical and most important if you have a certain career in which either your medical condition and/or medications may limit your ability to fully perform your job. For example, patients in the military are not able to be on certain medications such as biologics without having to undergo a review process where it could potentially impact their career. If you don’t tell your physician ahead of time what’s going on in your life, what are your goals of treatment, then it makes it incredibly hard for them to provide the best care they can for you.
For more resources on IBD check out these organizations:
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