There are many people who like me, long suffered in silence. This is my journey with Irritable Bowel Syndrome, how it all started and where I am now in my recovery.
There are many people who like me, long suffered in silence. This is my journey with Irritable Bowel Syndrome, how it all started and where I am now in my recovery.
I remember sitting face to face with my consultant at a clinic in Dublin feeling exasperated and completely hopeless. It had been a long journey of stomach issues; gastroenteritis, Helicobacter pylori (H. pylori) infection, and suspect ulcers but up until this point IBS had never been mentioned. At this stage, I was so used to always feeling uncomfortable that it had become my new normal, and if it wasn’t for the abdominal pain I would have probably learned to live with a constant feeling of discomfort, which I now realize is ludicrous. I was in my mid-twenties at the time with a new boyfriend, who is now my husband, with two things going through my mind while waiting for my verdict.
He was and is very kind and considerate and has been a great help in getting me to where I am today. Nevertheless, this was a very embarrassing aspect of having IBS for me, a young woman in a new relationship, when all I really wanted to focus on was looking great and having a good time. We are both foodies (ironic right with my history of eating disorders but trust me, it does not equal a disliking of food, nor does it necessarily derive from an issue with weight but that’s another conversation) so going out for nice meals was and is something we really enjoy.
There is one night I remember in particular, I wore a new bandage style dress for a meal in a fancy restaurant in Galway town. It was our anniversary. I loved the dress and that style had a Spanx-like effect (in other words, it sucks you in) which I was hoping would help with the inevitable bloating afterward. Sometimes the bloat would be less aggressive, and sucking in my tummy (something I had become very accustomed to) would be enough to somewhat disguise it however, on this particular evening it was not. I left in pain with a rock-hard bloated tummy which made me look like I was in the second trimester of pregnancy, and because it was summertime I wasn’t wearing anything over my dress to hide it. Looking back, there are often feelings from that night that come back to me. The upset, the embarrassment, and agony. I can nearly taste it.
So there I was, the last time I was to see my consultant after what felt like an eternity of unanswered questions, waiting to be told what was really wrong with me. She delivered the results of a colonoscopy which was carried out to rule out anything else and finally told me that I had IBS. She handed me a printout of a Low FODMAP diet (a thick bunch of A4 pages) which was relatively new at the time and born out of research carried out at a university in Australia. As far as I can remember I wasn’t given much more information than that. It was very overwhelming, I felt like I was being sent home with homework nobody would ever bother checking. The advice was to basically cut everything out of my diet (as I remember it) and slowly reintroduce one item at a time to identify food triggers. Triggers meaning those foods that caused me bloating and in some cases pain. It took a total of 15 weeks and I identified, among others, raw yellow onion, raw garlic, cauliflower, green peppers, the white part of spring onion, certain red wines (one type of grape), port, beans, chickpeas, acidic drinks, most fruits (excluding tomato and kiwi) and fennel (including the seed). However, my biggest issue in the end turned out to be stress – both physically and mentally. What was so difficult at the time was the lack of support and knowledge around me. I was never offered a breath test. In fact, the first time I even heard about it was when I discovered FoodMarble.
By this time I was also in early recovery from Anorexia and Bulimia, with the latter having been my biggest demon in later years. I was convinced that this was my body’s way of punishing me for what I had put it through since my early teens. In later years I have read reports suggesting a link between the two so I wasn’t necessarily wrong in that it may have developed for that reason but I was very wrong in thinking that I would have to pay for it for the rest of my life. Suffering from an eating disorder, especially Bulimia which is often not visible or known to others, is similar to IBS in that we tend to suffer in silence. It can feel “yucky” and embarrassing and both are often misunderstood which in my case led to me rarely discussing either at the start of my recovery. But who wants to talk about purging and bowel movement right?? Furthermore, IBS felt like a diagnosis of “we don’t actually know what’s wrong with you so let’s roll with this” 11 years ago, which is why I am so grateful that there is so much more support and research material available for those diagnosed today. Even if the knowledge and support is not available immediately to you (eye-rolling and dismissive comments are hopefully rare), there are companies like FoodMarble working on constantly improving the outcome and experience for people with IBS, and now also SIBO. I am so glad that I stuck to my Low FODMAP diet and came out the other end, however, had the FoodMarble AIRE and Food Intolerance Testing Kit existed a decade ago my journey towards recovery could have looked very different for me and I might have discovered much sooner that stress played such a big part of it.
In my case, this was the last of many diagnoses received over a ten-year period of stomach issues and complaints. I had an endoscopy done twice, once they found out that I had Gastroenteritis, and the second time I had a H. pylori infection which both caused me a lot of pain. When treated I felt a lot of relief but I was never okay and had almost resigned to the fact that I never would be. I was smoking cigarettes at the time and remember having to sit down with my head between my legs for a few minutes every morning after having a cigarette because I got so nauseous I couldn’t remain standing and broke out in a cold sweat. Something I probably did not disclose to my doctor because I was embarrassed and had convinced myself that it was all part of my punishment as a disordered person. It is possible that I suffered from IBS all that time but that it took a long time to diagnose these other issues along the way.
One of the turning points for me was realizing that what I was going through was actually quite common, it was just not talked about like so many other things in life. We are peculiar in that way in that we gladly speak of superficial things that matter to nobody yet, seldom find that we can speak of what has a real impact on our lives. Understanding that there was nothing special or unique about my situation gave me a lot of strength and I now take every opportunity to share my experiences and what I have learned since. If you are suffering from IBS or indeed any other condition, I would urge you to join a support group in your local community or online, perhaps an open forum where people can choose to remain anonymous if that feels more comfortable. Equip yourself with as much knowledge as possible. The more we talk about it, we do not just make ourselves stronger but we make it easier for those after us to open up in a more informed and accepting environment.
Disclaimer: This post is based solely on my memory and personal experience with no medical or scientific background or references.
If you resonate with Josefin’s story, it’s time to stop the cycle of suffering from digestive issues and finally get answers. Our AIRE 2 devices and food intolerance kit are designed to help you find your trigger foods, so you can finally take the guesswork out of eating and minimize flare-ups.