BadGut® Story on Microscopic Colitis
My name is Marilyn Konstapel and I have a form of inflammatory bowel disease, called microscopic colitis.
I’m sharing my story because microscopic colitis (MC) is an underdiagnosed disease, and many patients don’t get the medical help they need.
I had never heard of this disease until my gastroenterologist diagnosed me with it about four and a half years ago. Most likely, many of you haven’t heard of it either. When I was first diagnosed, I was relieved that it wasn’t a life-threatening disease. I had been concerned that I might have colorectal cancer. My main symptoms were frequent diarrhea, lots of abdominal pain, and/or very skinny stools (which I later learned are called pencil-poops). My late husband died from colorectal cancer, and I was aware that skinny stools sometimes indicate bowel obstructions, such as tumours.
MC is Life-Altering
At first, I first told my family and friends that I was so relieved that I didn’t have cancer, or a disease such as ulcerative colitis. Now, I tell people that while MC might not be a life-threatening disease, it sure has been life-altering.
I credit my gastroenterologist with diagnosing me correctly after the first colonoscopy she performed, which I have learned is uncommon. Because it’s a microscopic disease, biopsies need to be taken to properly diagnose it. However, many people with this condition undergo several colonoscopies and endure years of troubling symptoms, all the while being told that their colon is fine, likely because their medical team did not bother to take biopsies. These patients are then told that most likely they ‘just have IBS’ (irritable bowel syndrome, a functional condition that is different from IBD). These individuals continue to struggle for many years without adequate treatments until, finally, someone takes biopsies, and they receive a correct diagnosis. Biopsies also reveal which type of microscopic colitis it is, either collagenous or lymphocytic.
Accessing Healthcare With MC
There are other reasons for sharing information about MC. Most of the information shared about MC states that it’s a disease which mostly affects older females. I happen to fit that profile. However, looking back, I’ve had digestive issues for years, which gradually became more severe as I got older. But I think I could have avoided much of my misery if I had had a sooner diagnosis and been offered better treatment options. While my gastroenterologist diagnosed my condition correctly, the treatments she prescribed have been less than satisfactory. Thus, I joined online support groups for people with MC, and/or other IBDs. One of the things that comes up often is that people who don’t fit the profile of being an older female, because they are either younger, or not female, are told by their gastroenterologist that they have MC, even though they are young and/or male. Consensus among MC patients is that the age factor is likely because many patients don’t receive colonoscopies until they are older. However, younger and/or male patients do eventually get diagnosed with MC. In fact, I recently read a report of a one-year-old who was diagnosed with MC. The poor child had diarrhea for months, which finally resulted in a diagnosis after a colonoscopy with biopsies was performed.
Also, many patients don’t get proper treatment, even after they receive an accurate diagnosis. I don’t know the reasons, but I’m guessing there are several.
First of all, no medications have been approved for MC. Any medications patients might receive are prescribed off-label, because they have helped people with other types of IBD or autoimmune diseases.
I also think that because our diagnosis is microscopic, many people in the medical field don’t consider it to be a serious condition, which both a gastroenterologist and a rheumatologist told me. When I questioned them about what they meant by ‘not serious’, they explained that when it’s not a life-threatening illness, they don’t consider it to be serious. I realize that we’re fortunate to not have something more serious such as cancer, ulcerative colitis, lupus, etc. However, it is still a debilitating and life-altering disease for most patients. I have read many reports of people ending up in emergency rooms because of debilitating diarrhea and people unable to work because they are constantly needing to run to the bathroom. Many patients also experience fecal incontinence. I’ve been fortunate not to experience that, but it would be embarrassing and life-altering.
Online Misinformation
Because so many of us don’t receive the medical care we need, we try to find support online. It works great for some of us, but it can also be counterproductive, since there is so much misinformation online.
I have found that there are positive and negative sides to patients searching online.
Patients finally feel less alone, and they do often get good information and support. Many people with MC also have other conditions, and thus they might get important information which they can then share with their doctors. Some also get good information about treatments which might work for them and/or hear of other conditions which might be the reason why some treatments didn’t work. Apparently, many patients might also have celiac disease, or something called BAM (bile acid malabsorption). When those conditions are treated, often the patients’ symptoms improve greatly.
Since we live in an age with worldwide internet, people around the globe can access and share information. When I posted on a microscopic colitis support group that I was looking for input on what information I should share, I got one response from a patient who lives in Australia.
However, there is so much misinformation online. Thus, many patients could end up with really disordered eating, because of the conflicting information they find online, or they might end up using lots of supplements or foods that make their condition worse. This can make the condition even more difficult to live with.
Conclusion
I hope that by sharing my story about microscopic colitis, this disease will receive more attention, research, and ultimately better treatments.
