Long, Drawn Out Diagnosis Period

There is often a long, drawn out diagnosis period when it comes to irritable bowel syndrome (IBS). Because a lot of the symptoms (ex, abdominal pain, nausea, changes in bathroom habits) are non-specific, meaning they could be the result of any number of things, doctors kind of need to rule out a lot before making a diagnosis. This can be very frustrating for patients and their loved ones because without an official diagnosis of IBS, most doctors are reluctant to treat a patient. Obviously, without proper treatment and care, the odds of someone’s quality of life improving are not very high.

The process of a diagnosis of irritable bowel syndrome can be grueling for many patients. Oftentimes a person has to go through mountains of tests which aren’t pleasant and can be invasive. Many people understandably try to experiment with various things on their own (such as OTC medication, altering diet, etc) just to see if there is something, anything, they could do to help themselves. Having to explain to doctors over and over again what is going on, oftentimes needing the emergency room, missing out on work/school, family events, and vacations are just some of the things IBS sufferers experience during this period of diagnosis and unfortunately, oftentimes afterwards.

Once everything else is ruled out and a diagnosis of IBS has been made, there is no magic pill or plan that works for everyone. I don’t mean to sound negative even though I am sure it is coming off that way. I am merely someone who suffered from my own chronic, invisible illness (ulcerative colitis) for 12 years before opening up to anyone who wasn’t my parents about what I was going through. And what helped me was seeing other people either write or share a video about the hard times and feelings they either had experienced or was currently struggling with. It made me feel less alone and empowered me to want to open up more, help people and continue to connect with others who understood and got me.

Anyway, that is my intention here. I want to show anyone who is suffering both physically and emotionally, that someone else understands how hard this is! It impacts so much of your life and the life of your loved ones. It can really take its toll on relationships and friendships too. It is terrible and I want you, actually I NEED you to know, I understand. So many people understand the internal struggles you are going through.

So back to what I was saying before I went off tangent. Once a diagnosis is made, it may be a relief to finally have a reason for why you have been suffering but that doesn’t mean the suffering necessarily ends after the next doctor’s appointment. The hope is that you have a positive relationship with your gastroenterologist who can work with you as a team to manage your IBS symptoms.

For some, it may mean medications and oftentimes that requires trial and error with different types, doses, as well as a combination of medications (possibly some prescription, some over the counter.) There are lots of people who get lucky with the first medication and if you have a doctor that knows you and/or your history well, I think the likelihood of that increases. Other people don’t want to go the medication route and try all possible dietary and lifestyle changes that can be made. Even if at the end of the day those changes help improve quality of life for that person, that too can also be a trial and error process that comes with frustration and loneliness. Lots of times, the treatment that works best for IBS sufferers is a combination of various types of therapy but even small changes can improve symptoms a bit making life a little easier to get through.

It is nice to have an official diagnosis but I did want to acknowledge that the process towards one is a very difficult emotionally and physically for the reasons mentioned above but also because it is invisible which means there may be people in your life who doubt your suffering. Some doctors may even make you feel like it is all in your head which can make a person feel hopeless. It has with me. 

I also want to acknowledge that I know there are people in the IBS community who have a diagnosis of irritable bowel syndrome but believe there is something more at play. Trust your gut and communicate those feelings to your GI, your primary doctor, or any other doctor you trust that knows you well - and see how they respond to your concerns. There might be some secondary issues going on that could be easily treated, making you feel better, increase your quality of life and understand more about your body in the process.