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Is A Diagnosis Of Exclusion Really A Diagnosis?

I have a feeling this topic might get controversial, so I extend my apologies ahead of time if it does.

I don’t know about you IBS sufferers, but I can’t help but feel that irritable bowel syndrome is not a legitimate diagnosis. How can a diagnosis of exclusion be an actual diagnosis? Well, that’s exactly what medical experts consider IBS to be since there’s no definitive way to test for it. You can test for cancer, Crohn’s Disease, and other serious chronic illnesses, but there’s no biomarker for IBS, so it’s something that is sadly undetectable by physicians today.

What is a diagnosis of exclusion?

A diagnosis of exclusion is a medical term used when a diagnosis of a medical condition is reached simply by ruling out other conditions. In other words, if there are no conclusive results that point to a disease that is detectable, then an educated guess will take place as your diagnosis (at least that’s how I read it). I understand that medical experts can only do so much when it comes to testing and I do cut them some slack, since I guess saying “I just don’t know what’s wrong with you” can sound a lot worse than “irritable bowel syndrome” to many people (although the former response was what I was getting for a long time). The educated guess, with all due respect, was not an easy conclusion to arrive at because it took me almost 5 years to officially get diagnosed with IBS. However, I’ll tell you this: I’d much rather get an educated guess than a simple guess because, in hindsight, I want to feel like I did everything I needed to do to be sure that what I was, and still am, going through is not life-threatening. But calling what I go through as “irritable bowel syndrome” can be a misconception to those who know nothing about my condition and overall hardships I face due to my health.

IBS is complicated

Irritable bowel syndrome can be misleading because it only sounds like an issue with the bowels when it’s clearly more complicated than that. However, that’s what I end up telling people anyway – that IBS is a very complicated disease – just to make a long story short. How can I explain that IBS is more than irregular bowel movements and stomach pain, when it includes other issues like back pain, joint pain, anxiety, depression, possible eating disorders, irregular sleep patterns, lack of libido – I mean the list goes on and on, folks. Summing up what I go through by calling it “irritable bowel syndrome” or “stomach problems” belittles the tremendous obstacles I have faced in the past, continue to face today, and most likely in the future. Nonetheless, I feel like that’s the simplest way for me to describe my condition without going too much into detail, or else I’ll feel like I’m “sharing too much information”, since it’s taboo to talk about toilet issues, and other health concerns, in public.

Stamping the term “IBS” on people with digestive issues is also a major problem because it implies that we suffer from pain because we don’t “eat right.” That is so far from the truth because food is not the only trigger to our symptoms. A great example of that is when many IBS sufferers try out the low FODMAP diet (which is supposed to help those with many digestive disorders) but get upset or discontent when the diet is not 100% effective. I was one of those people because I get negatively affected even by some of the “safe foods” on the list. I can eat something “safe” one day and be totally fine, but if I eat it again the next day, it’s quite possible that it will trigger a symptom, which has happened to me many, many times before. My friend, Mannie, who also has IBS put it best by saying, “Personally, this just adds to the evidence that IBS is less a real diagnosis, and more just a name for a collection of symptoms attributable to any number of possible underlying causes that we just don’t know how to identify yet.” I couldn’t have said it any better.

For now, I’ll accept my diagnosis of exclusion for the simple fact that it is the best term that describes concisely what I am dealing with and connects me with other people going through the same issues. I hope one day, however, that I will finally be diagnosed with the cause of my irritable bowel, and it can be somehow cured or managed better. Am I asking for too much? How do any of you feel about the way IBS is diagnosed? Please feel free to share your thoughts below and thank you so much for reading my article.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The IrritableBowelSyndrome.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • cfamilyfix
    1 year ago

    My IBS has been with me for the better part of 20 years but recently has become a lot more sensitive and frustrating. I work as a bus mechanic which is pretty physical. Heavy lifting while dealing with symptoms…well let’s just say I have reached the point where I’d rather just call out than even try. I appreciate these articles a great deal because they really hit the nail on the head and are comforting at times. Thanks Hess!

  • jaeger91
    1 year ago

    This is so true. It’s not only difficult to figure out how to explain absences from work but also from gatherings with family or friends. Most people think we should just take something and get through it. If only that would work. I wish it would. I have missed out on so many activities because I might have to wait in line for the toilet (when I really can’t wait) and because I feel horrible!

    I can really relate to the line in the article that mentions people blame us for causing our own distress. My own mother often tells me I must be eating the wrong foods and/or not managing my stress. Sometimes she’ll even say that diarrhea makes her have urgency to get to the bathroom. Well, duh. But does she have to worry about full-blown fecal incontinence on a regular basis? Or about waking up in excruciating pain at 2 a.m. to make multiple visits to the bathroom? And would I intentionally eat the wrong thing or neglect to manage my stress knowing this would be the result? I’m with you in wishing we could find out what really causes it so we can learn how to effectively treat it and not just “manage” it or learn to accept it.

  • HessP moderator author
    1 year ago

    You’re so on point with your comment and I’m glad you can relate, jaeger91! Many people who don’t have IBS do assume its an easy fix for us to get better simply because they’ve experienced a symptom here or there. What they fail to realize is the severity of our condition and the inability to sometimes stop the inevitable, which is a very painful flare-up. Either way, people’s misunderstandings is only more reason to continue speaking up and educating those about IBS, so that hopefully, in the future, there will be a better understanding about what we face on a regular basis. Thank you for taking the time to comment and stay strong! Best, Hess (IrritableBowelSyndrome.net Team member)

  • Holly5757
    1 year ago

    Could not have said it better! When your pain and suffering get poo pooed (no pun intended) by others that do not suffer with IBS, and you feel as if you cannot defend yourself is exhausting. My perfect example is my job… There have been days that I am in so much pain with nausea, diarrhea, actual pain, that I call in sick. If I say it is an IBS flair they do not understand how a flair could be enough to call in sick. If I say I have a stomach bug, they wonder why it’s the 4th time this year and why are you lying.
    There needs to be a better term than IBS that conveys the actual extent of one’s suffering. But as what to call it, I have no clue.

  • johnbentley
    4 months ago

    Do people who suffer from chronic illness have any protections at work in the United States? I missed a lot of class at university due to IBS flairs and made it up at home but do not get as high grades because a large part of my program requires being in the field. I’m determined to make my career work when I graduate but I wonder if part of this will involve finding an employer that can accommodate intermittent absence or just working from home. Though my passion for ecological research and environmental law brings opportunities to travel, which I’m ultimately determined to take advantage of.

  • Chris Hall moderator
    4 months ago

    Hey, @johnbentley – We definitely hear a lot of community members share about the difficulties they have at work. There are some protections under the ADA (Americans with Disabilities Act) as Laura mentions in her article here: https://irritablebowelsyndrome.net/living/working/. It seems the work from home positions continue to gain popularity. I hope you’re able to find a position/company that accommodates your needs when you graduate! When do you graduate? – Chris, IrritableBowelSyndrome.net Team

  • HessP moderator author
    1 year ago

    I’m so glad you understand where I am coming from, Holly5757! It can definitely get exhausting at times trying to explain our condition to those who hardly know anything about it and just belittle what we go through. Nonetheless, that should just give us more fuel to keep raising awareness so that people who don’t suffer from IBS can eventually get the proper education about it. If they don’t get it now, then soon enough they will the more we speak up about it. We just have to be patient, but yet determined. =) Thank you for sharing and taking the time to read my article. Stay strong! Best, Hess (IrritableBowelSyndrome.net Team member)

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