Guest Post From a Teen for IBS Awareness Month: I Am No Longer the Lost Boy
IBS Impact is pleased to welcome a new guest poster this week for IBS Awareness Month. Brayden A., a 17-year old male, was diagnosed with IBS 3 years ago. He lives in the eastern United States with his parents, brother, and golden retriever, who all hate to see him suffer. He is working to manage his IBS so he is prepared for a full college experience and bright future. He wrote this essay especially for IBS Impact. We thank him for his time and his honest, brave, thoughtful and hopeful insights.
Read Brayden’s mother’s guest post here.
Being diagnosed with IBS should have been a defining moment in my life. It sure became a dictating factor in the days, weeks, and months to come. But, at the time, I had no idea what to make of it. I had never even heard of it. Every test I did came back negative, and I did a lot of tests. My family and I just wanted to know what was wrong. All we knew was I had been severely nauseous for months with some pain. The news of IBS did little to soothe our concern. Conditions like lactose intolerance and celiac disease had simple solutions, just cut out the food that causes the problem. Not to subtract from the inconvenience and unique problems those conditions cause, but at least they are understood. IBS, however, is not. No one knows why it happens. There is no definitive treatment because different cases respond differently. There is not even a test for it. I was given medicine that didn’t seem to work. I felt lost.
It took over three years of trial and error to get me where I am today. Even after all that time, I am not cured, nor do I expect to be any time soon. I have learned how to somewhat manage my symptoms, but it is still very much a question of when is the next time I will have a flare up, not if. However, instead of week after week of barely functioning, I’m usually just nauseous for a few hours, most of the time starting shortly before a bowel movement, sometimes during or right after. On occasion, I have flare ups that last days at a time, but these tend to be fewer and farther in between. But, like I previously mentioned, it took three years to get to this point. The road was by no means easy. It drained me both physically and mentally to lengths I had never experienced before.
IBS is not a life-threatening disease. Severe conditions, such as cancer, are. Huge sums of money and time have been devoted to searching for a cure and raising awareness for such conditions and rightfully so. They are worse than IBS could ever be. And although I’m told that there is research into IBS, it seems like its not enough or at least not widely shared with those of us that have it. For the foreseeable future, I, and everyone else who suffers from IBS, are left to make the best with the cards we’ve been dealt. Hopefully, this paper can help those who have IBS expedite their symptom management and learn from my experience.
The best advice I can give is to take it one day at a time. Don’t worry about how you’ll feel a week from now, just focus on today. If you feel good, even if it is just relatively speaking, then take advantage of it. Do things you enjoy doing. Live your life like it has some sense of normalcy. One of the most important things you could do is to blow off some steam and find a way to vent your frustration. For me, this usually entails hanging out with my friends when I feel well or listening to music way too loudly when I don’t. You have little control over whether a new drug or a diet change will help ease your symptoms. Having a positive attitude may not make you any less nauseous, the form my flare ups usually take, but at least you will be less miserable. And that is ultimately the goal. Managing IBS is not solely about symptom management. Any quality-of-life improvement is important. And for me at least, the mental toll IBS took was worse than the physical symptoms.
My symptoms first started in the winter of my eighth grade year. I was a year-round competitive swimmer, played soccer every fall, and was working toward my Eagle Scout rank with Boy Scouts of America. Then suddenly I was too sick to do any of it. My first pediatric GI put me on what she called the the “holy trinity” of IBS: periactin, dicyclomine, omeprazole. The side effects interfered as much as the IBS symptoms, but by that summer, I was largely symptom free, even for months after I was weaned off the medicine. I thought the whole thing was behind me. I went to my first of four planned Boy Scout High Adventure Bases, started a new high school, played soccer for my school team, and I scored points in the 500 meter free style event for my high school varsity swim team, beating several upper classmen. Then I felt nauseous again. I went to the doctor and was put on the same drugs that had seemingly cured me during my first bout, but they had no effect. Everything that worked the first time did not provide any relief. I had an endosocopy to see if the constant nausea was an upper GI issue, it wasn’t. Omeprazole was dropped, dicyclomine was increased, and symptoms only got worse. It was all too much to handle. The feeling of hopelessness that is so intertwined with suffering something over which you have no control, which you do not even understand, threatened to overwhelm me. During my first bout, I was optimistic. I was nauseous but I couldn’t be nauseous forever, right? Eventually I would get better, right? So even on my worst days, I could get through it because I knew that eventually those days would be a thing of the past. And then for a few months they were a thing of the past. I got to be a normal kid again. Until I didn’t.
Based solely on symptoms, my second bout was less severe than my first. But, my optimistic spirit was crushed. I was suspicious of every good day where my nausea was manageable because I refused to get my hopes up. Every bad day only reaffirmed my belief that this was the way my life would be from here on out. I do not know whether I could, or even would, call what I had depression; I am certainly not qualified to diagnose myself, but there were similarities. A common thought associated with depression is that life would never get better. I wholeheartedly believed that. It was hard to have a good quality of life with that mindset.
This mental slump also negatively influenced other aspects of my life too. Normally, I’m a pretty easy going kid. However, I found myself lashing out over the smallest things, particularly with my brother. Even when I felt good enough to do things, I did it with a fear that my symptoms would flare up because of my actions. I spent less time with friends because going out put stress on my body. However, since my mental health was not so great at the time, I convinced myself that I saw my friends less because they did not want to see me. I felt obligated to try to be as fun and as happy as possible around my friends. If I wasn’t, they would finally work up the nerve to say what I convinced myself was inevitable, that they only tolerated me because they were too nice not to.
Of course, none of this was true. My friends were my friends. It took a long time to finally open up about all this, but with the help of some of the best friends I could ever ask for, I sorted most of it out. Being able to talk to them about it helped me realize why I felt the way I did and helped them understand what was happening to me. With that out of the way, I didn’t feel as isolated. Knowing that my physical symptoms weren’t causing problems with my friends helped my mental health. At the same time, I started seeing a new pediatric GI who was more helpful at discussing ways to manage my symptoms. I had my medication adjusted, which was good because some of it was actually making me feel worse. She prescribed low dose amitriptyline which is commonly used for pain disorders and also seems to reduce the nausea, and she taught me ways to manage the side effects of that. She also helped me find a therapist that specializes in functional GI disorders who helped me better understand the brain-gut axis and how it impacts IBS. My parents helped me learn about foods that can worsen IBS, and we have found that too much wheat can be a problem for me. When symptoms wear me down, strong ginger tea and enteric coated peppermint oil capsules are sometimes helpful, and then I find a computer game or music and ride it out, knowing it it will ease soon. My parents and I are always looking for new proven treatments to try, and this week I started gut directed hypnotherapy with a recorded program I can do at home.
With these interventions, I have had more normal days, or rather normal given the pandemic. I worked as a lifeguard at my community pool last summer and made it to the limited swim practices that my team had this season. My school has moved back to full time classes but kept the remote learning so I am now able to tune into classes on my sick days, helping me to keep up. My school has been great, and sometimes I make it in for a class or two and then need to go home. I talk to any new teachers at the beginning of a semester, so they know that even though I may be present in class, it doesn’t mean I’m 100 percent and may not be keeping up. I just ask that they be patient with me and all they have asked of me so far is that I keep them up to date with what I need if I’m falling behind. I’ve learned how important it is to tell the people around you what’s happening and what you need. You have to be your own advocate, that’s one of the few things you can actually do to take some control.
When I was asked to write this essay, it took me a long time to decide what to write about. Obviously something IBS related, but that could be any number of things. Then I started thinking about what I would have wanted to see three years ago when I was first diagnosed. I kept being told that I would get better, but no matter how many times I heard this, it was never from someone who had lived with it. Even the doctors did little to relieve my worries because every other sentence they said was about how little they understood IBS, and how far away the miracle drug that cures everyone is. The more I started thinking about it, the more compelled I was to write. Because I’ve experienced the worst IBS has to offer, and I lived to tell the tale. I am living proof that it does get better. I suppose that is all I really have to offer besides the few tips and tricks I’ve thrown in, but perhaps if I had seen this paper before, I would not have felt so alone. I am no longer the lost boy I was three years ago, so maybe, just maybe, I can make the journey easier for others too.