My Discouraging Journey to Getting Diagnosed

My Discouraging Journey to Getting Diagnosed

It all started back in 2009 when I developed a bacterial infection called Helicobacter Pylori, or H. Pylori, due to a food poisoning experience which I have written about in another article. To make a long story short, I took prescribed antibiotics to get rid of the infection, which thankfully worked, the infection was gone. However, even though I no longer had bacteria that was supposedly causing my stomach issues, taking the antibiotics never got rid of the symptoms.

Going the journey alone

I continued to suffer from, what I considered at the time, abnormal stomach pain and irregular bowel movements, which caused so much anxiety and stress in my life because I had no idea what was wrong with me. Of course, I still saw doctors and specialists about my symptoms, describing how they were impacting so many aspects of my life. For instance, I had to drop out of college because I wasn’t making it to my classes and failing, I lost many jobs due to chronic absences, and I was gradually becoming more and more antisocial as my symptoms continued. My life was becoming something I never expected and wanted, and therefore I made it my mission to find answers to my pain. However, after several tests, procedures, and medications, the doctors and specialists never found an answer or solution to my suffering. At that point, I was starting to become very depressed because I couldn’t prove to myself, or anyone else, that my horrible and painful experience was being caused by something real.

This discouraging journey went on for a few years, and it’s sad to say that throughout that time, I was suffering from a condition that I couldn’t even put a name to. Not only that, but many times it was very difficult trying to convince certain people, like my old bosses, some of my friends, and family members, that what I was going through was serious and valid, and not all in my head. Can you imagine trying to confide in the people you think you can trust and will help you get through tough times, and they don’t believe you? It was bad enough that I was suffering from an unknown condition (to me) at the time, but to also deal with indifference and discouragement from those I looked up to was very devastating for me. To this day, I still can’t believe that, for a while, I was suffering and going through this horrible journey alone.

Finally, some answers

I started to ask the universe, “how many tests does it take to figure out what is wrong with me?!” My world was turned upside down because I couldn’t find the piece to this puzzle that kept me from possibly being put me on a path to finding a cure, or at least great relief. I was left clueless about my pain for a very long time, until finally in 2014 when the specialist I was seeing at the time realized I went through enough tests and procedures, and diagnosed me with irritable bowel syndrome. So basically, it took me a little more than 4 years to officially get diagnosed with IBS, a diagnosis of exclusion. Getting diagnosed with IBS did not take away my symptoms or suffering, but it did give me some peace of mind that what I’m going through is real and that I am not alone. I hope no one ever goes through what I went through while getting diagnosed. After my journey, I created a new mission for myself, which is to make sure that I provide the support that I desperately needed in the beginning to those who will need it throughout their path to a diagnosis.

Can any of you relate to my story? How long did it take for you to get diagnosed with IBS? Or, are you still on your journey? Feel free to comment your answers below, and thank you for reading.

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

View Comments (6)
  • kimberly1961
    3 months ago

    I just wanted to say Thank you for this site. I have spina bifida with severe bladder problems, IBS-D, mobility issues, and sometimes incontinence. I take probiotics, fiber, yogurt but I’m rarely ever “normal”. Also, some foods I love that help my bowels hurt my bladder! Sometimes, life is just awful. I am trying to hang in there. I’m going to try some peppermint and see what happens.

  • HessP moderator author
    3 months ago

    You’re very welcome, kimberly1961. I’m so sorry to hear about all of your health struggles, but please know you certainly are not alone and have lots of support here. Sending lots of positive vibes your way! Keep us updated on how the peppermint worked out for you. Best – Hess, IrritableBowelSyndrome.net Team member

  • johnbentley
    3 months ago

    Hess,
    Thank you for sharing. After returning to the States from the most rewarding experience doing research while living abroad for 2 months, I struggled with a persistent GI-bug. A round of Xifaxin appeared to mess me up worse. Then after over a month of testing, I was diagnosed with post-infectious IBS. The amount of poop I transported to my University’s health center [on my bike] is hilarious in hindsight. I fell months behind in class. I am proud to have completed all of my classes this past week. I’m still on this wild journey that cycles along a spectrum of wicked strength and perseverance to total despair and fury. I’m fed up, man. Your articles are great. We’re in this together. All of us. Even if it’s not IBS we all have our struggle(s). It’s sacred since I choose to make it so. I am going to continue my work that grants me incredible travel opportunities. I am terrified and I will follow through.
    Cheers,
    Jack

    Illness provides a f***ed-up way to live in the moment, day-to-day, breathe-to-breathe. It seems silly that I spent any of my time focusing on the downside of this health complication because I am different now. I do not even want to be the healthy version of myself I was because I am entirely different now (and in some ways healthier).

  • HessP moderator author
    3 months ago

    Jack,

    Thank you so much for taking the time to read and leave such a great comment. I can totally relate from the amount of poop being transported to the vicious cycles IBS tends to put us through. Another way to possibly perceive this experience is life testing our strength of character. I can already tell how mentally strong you are by your determination to continue with your work that allows you to travel abroad. I think you’re living an inspiring story, so I urge to keep honing in on your strength, keep doing whatever it is that makes you happy in life, and don’t forget to encourage others to do the same along the way.

    You’re right. Illness has a very screwed up way of distracting you at almost every moment. Almost forcing you to miss out on life. It does seem silly to miss out on life when you’re alive. Thus, why let pain stop you from doing such a thing? We might as well give life all that we have while we’re here, right? What’s important is that you said “enough is enough” and now you’ve gained a perspective that allows you to appreciate life, despite the struggles your painful condition puts you through. I admire you, Jack. Thanks for being a part of our IBS community. Best, Hess, IrritableBowelSyndrome.net Team member

  • JudyStaed
    12 months ago

    I have walked a very difficult walk with digestive problems literally my entire life. I was hit by a car two day before my second birthday. Among other injuries left collar bone was broken. As the years moved forward and the suffering increased I became aware of the Vagus Nerve which runs through the left side of your neck. It controls among other things the peristalsis which governs what should be the rhythmic impulses that move digestion forward. In my case because of the damage nothing will digest properly in my system. As a child I had upset stomachs all the time. That moved froward to chronic colon problems. As time evolved I went from a diagnosis of spastic colitis to finally IBS. It has altered my entire life. Yes, I get the anxiety and depression. Yes, I find that I have pulled away from social events and will never, ever eat out anywhere because I never know what is going to follow. Also, I got a severe bacterial infection from bad tuna fish five years ago. I had to take four rounds of antibiotics which worsened my digestion substantially. I find that my feelings in the midst of the worst symptoms is one of being totally alone…that no one can truly understand. I feel like if I mention how badly I am feeling my friends will just think I’m whining about my digestion again. It is a hard and difficult walk with this condition. One day you eat a type of food and stay within your normal daily suffering. The next day you could eat the same food and then get a terrible attack. I continue to work towards finding my footing with this condition. Last night I did something I never do. I was in a lot of pain and I finally just cried because I felt like I couldn’t take another minute of it. However, dawn comes. A new day comes. With it comes the hope that my day will be better. My message to all who suffer with this beast of a condition is to just enjoy all the good in life. Embrace those moments when you’re not suffering. Always keep in mind that the dawn will come again.

  • HessP moderator author
    3 months ago

    JudyStaed,

    I’m extremely sorry for the late response, and I’m also very sorry to hear about your difficult experience with digestive problems. Your story resonates with me because I, too, have gone through a rollercoaster of life experiences due to my digestive issues – from my life altering because of my IBS diagnosis to just crying because I can’t take it anymore. Please know you are not alone and you can always come here to express yourself or vent anytime. I, too, believe it’s important to appreciate the good things in life and amplify them so that they appear to overshadow any negativity. I believe that kind of mentality allows us to put on a smile even when the pain is there. So, thank you for sharing such encouraging words to our IBS community. Wishing you lots of strength and positive vibes to get you through each day. Best, Hess, IrritableBowelSyndrome.net Team member

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