I am going to start by saying that Irritable Bowl Syndrome and any similar or related condition is different for everyone. This post talks about MY experiences and mine alone. What works/doesn’t work for me may not be the same as the next person. Also, just for reference, IBS in particular is usually categorized as IBS-D (with diarrhea), IBS-C (with constipation) or a mix of the two. I have IBS-D, which is very different than the other two kinds and I’m sure the experiences of people with the other two kinds are very different than mine. Also, I feel it goes without saying that this post discusses bathroom issues so if that bothers you just stop reading now. I try to keep it as mild as possible but this is a post about IBS so deal with it, or don’t.
I can say concretely that my IBS symptoms began in August, 2015. I was on vacation and ate a very questionable (but delicious) cheese pie from a Middle Eastern food truck the night before, so I thought I had food poisoning. I took pepto bismol throughout the week (at the time I did not know that Imodium is a much, MUCH better over the counter medicine for my problem) and made it through the week with a little extra stress but nothing too serious. Looking back, I probably started having some IBS symptoms a year or two before that, but nothing as consistent as it has been in the past year. This timeline makes sense; IBS is more common in women and symptoms most commonly begin between adolescence and your 20s. Although I started seeing doctors for this issue at the end of August, 2015, I did not get a concrete diagnoses until March, 2016. A lot of other things need to be ruled out before an IBS diagnosis can be made, so it has been a long and arduous process.
I’ve spent some time reading about IBS over the past couple months, and based on some people’s experience I will say that I am fairly lucky, all things considered. My IBS definitely complicates some things but for the most part I am able to live a similar lifestyle as I did before; it is not especially debilitating for me. I also am not normally in much physical pain aside from the occasional gas or mild cramps. Part of me is concerned that this means things will get worse over time, but I am hoping that is not the case. For now, I am thankful that it is not that bad, but I still have some observations and things I’ve learned from the past almost-year about what life is like with this disease that people mostly don’t know a lot about.
- There is no one thing that works or doesn’t work for everyone.
Part of what has been so frustrating about this issue is that recommendations are not one-size fits all. You have to find out what works and doesn’t work for you through a system of trial and error. Many resources will say that dairy/cheese can be a trigger for IBS. Aside from cheese and a splash of milk in my coffee, I don’t consume too many other kinds of dairy regularly, but I can say that cheese actually makes me feel better. Cheese is well known for “plugging you up” and since I have IBS-D, that could be why. (Some people with IBS are also lactose intolerant, but I have been tested for this and it does not apply to me.) A lot of resources also say that alcohol is an IBS trigger. I have found that a drink or two actually seems to alleviate symptoms, but I think that in reality it is just taking my mind off the stress of the idea of symptoms — more on stress will come later. If I do want to drink, I do have to consider what I’m drinking based on the kind of day I’m having. If it is a not so great day, I may opt for a glass of wine or a whiskey and ginger ale instead of a beer, but for me alcohol does not hurt and sometimes seems to help. Things that many people probably say is a trigger, such as spicy food, does not seem to make a difference for me. (My dad responded to this by saying, “How would you know, you put hot sauce on everything, so literally anything could be a trigger” which is an admittedly valid point. But I’m not giving up my Frank’s Red Hot.)
Here are some things that have worked for me:
· I can’t have fried food be the first thing that hits my stomach and gets my digestive system going. I was out with family for lunch and we ordered fried pickles as an appetizer and I could tell before the meal was even over that something wasn’t right.
· Carbs (rice, pasta, crackers, etc.) make me feel better. Meat by itself makes me feel worse. I can eat meat as part of a meal with starches and other components, but if it is just meat I don’t feel great.
· I read that 10–15 minutes of mild exercise (walking, etc) in the morning can get your intestines contracting at a regular rate. This seems to work for me. I don’t do this every morning but doing it a couple times a week seems to help.
· Peppermint is known to help digestion, and peppermint oil pills have been helping me the past couple weeks. Peppermint patties are a new favorite candy, and I will occasionally drink peppermint tea.
· My issues are worse in the morning so I need to provide myself ample time in the morning to get it out of my system (literally) before leaving the house.
· I was between insurance providers the past month and had to get a sample pack of birth control pills from my OBGYN to get me through my one month with no insurance. It was a different brand than what I normally use and I have noticed a marked improvement in symptoms over the past couple weeks. I’m not sure if it had to do with the birth control change or the other things I have been trying/doing but I am going to ask my doctor to change my prescription and see if I see long-term improvements.
· Eating smaller portion sizes more frequently throughout the day is definitely helpful. I have found I can typically eat all the things I enjoy as long as I have them in smaller portions. Which honestly is better because I love eating at restaurants and trying new foods, and smaller portions usually mean I have leftovers, which spreads out the enjoyment over a longer time!
· When all else fails, Imodium.
2. All the sudden everyone becomes a doctor, and even people who are very close to you will judge you.
As noted above, there is no one thing that works for everyone. Only you know what is making YOUR body feel better and worse. But when you have a condition that can mildly impact others (through your need to take frequent bathroom breaks, etc.) all the sudden everyone knows what is best for you. People who are very close to you will make comments like:
“Are you sure THAT is a good thing to eat with IBS?”
“If you would just _____________ you would probably feel better.”
“If you changed your diet in XYZ ways, ABC would be the result.”
I know that these comments typically come from a place of caring and not wanting you to feel bad, but to anyone who has thought about saying this type of thing, here is a word of advice: don’t. The person you are talking to knows their own body better than you do. They know what is/isn’t going to make them feel bad. And sometimes, even something that puts a person at risk of feeling mild discomfort, is occasionally worth it depending on the setting/situation. When you have IBS, you already have many new inconveniences and stresses– if someone wants to just enjoy something “normal,” let them. It is truly none of your business and your comments come off as very condescending. Not to mention, that even when a person does all the “right” things, they can STILL have days where there is just a random flare-up for no reason, so making something that is for the most part out of their control feel like their fault is only going to cause friction between you and that person.
In addition to the kind of judgement where people make you feel that this is your fault, is a different kind of judgement where people treating you like you are being dramatic. When my symptoms are bad they are really bad, but a lot of the time I don’t have symptoms. Close friends or family who see you regularly when you are fine, don’t understand that the impending doom of a flare-up is never far from your mind. When you are a little on-edge about going somewhere without known public restrooms, it is because you have been in situations before where public restrooms are very necessary — even if you feel okay and the need is unlikely today. People will treat you like you are being dramatic, even when they probably don’t mean to. What people don’t understand is that doing small things that alleviate the stress of being in an unfamiliar place where you don’t always know where bathrooms are (taking an uber or a taxi in a city instead of a subway, taking a form of public transportation like Amtrak that you know has bathrooms instead of a bus or a car, arriving to an event early so you can snag a good seat with an easy exit to the bathroom if needed) can make a HUGE difference in how you feel and can actually lower the likelihood that you will even have symptoms at all.
Speaking of stress…
3. Stress is a huge trigger.
This can be stress in all forms. I’ve noticed if I am having a stressful week at work or in my personal life, symptoms are somewhat worse. But for me, the biggest form of stress is the stress of not knowing where the closest bathroom is or being in a situation where I can’t go to the bathroom. I can feel completely fine for hours at a time when I know in the back of my mind that bathrooms are easily accessible. LITERALLY within 5 minutes of going to a new location where I’m not familiar with the bathroom situation or where I know for a fact that there are none, I will feel an urgent need to use the bathroom. I will sit in class for hours not needing to go, as soon as it is my turn to speak or do a presentation, I have to go. I recognize that part of this is mental and “being in my own head.” But, the way I try to explain it to people is: If I had nothing to worry about, I wouldn’t be worried. I get nervous BECAUSE I have had situations in the past that warrant worrying now.
I recently started a new job that is much closer to my house than the job I had until this past March. I was speaking to an old coworker and I said something like, “I don’t think you know this but I was recently diagnosed with IBS and my symptoms happen to be worse in the morning, so not having a long commute and having a later work arrival time has been really helpful.” This colleague has a background in the medical field and without missing a beat, she responded, “Oh wow, I didn’t know that, that was probably really hard. Stress increases inflammation, and I am sure that a long commute was stressful not just for the commute itself but also not having consistent access to a bathroom. That stress/inflammation cycle probably made that much worse.”
I can’t explain how GOOD it felt to hear someone who actually knows what they are talking about validate my situation in that way, especially when so many others make you feel ridiculous for it (normally unintentionally, but intentions often do not equal outcome.) Also, although IBS had NOTHING to do with why I left my old job, the new commute and schedule have been very helpful, which shows that sometimes when you have a health concern you need to look at other environmental factors besides just what is going on inside of your own body.
4. Because of the stress issues, especially in unfamiliar places, I have become an expert in bathroom-friendly public places.
In the area where I live, I know which stores have the best bathrooms and which don’t have them or have really gross ones. On my old commute to work (which is still my occasional commute to graduate school) I know which exits have easily-accessible bathrooms and which don’t. If you visit me and we are out in public and you ever need to use the bathroom, don’t worry — I got you.
Unfortunately, this means that I am never fully 100% relaxed unless I am at home or in the home of a family member or very close friend. In the back of my mind, I am always scanning for public bathrooms and keeping an eye on any long lines forming at the bathrooms.
Interestingly enough, on that August vacation where my symptoms first started to manifest, if I had known that the issue was IBS I probably would have been more stressed out and in turn, felt worse. When I thought it was food poisoning, I had confidence that pepto bismol would do its job and for the most part I felt not ideal, but okay enough to still enjoy myself.
5. You plan ahead in ways you never had to before.
I take Imodium when things are bad or, if I have a very important thing when going to the bathroom is not going to be an option, I will occasionally take it pre-emptively. My doctor has assured me it is fine to take it as often as I need, but I try to limit it. I also try to make sure I go to the bathroom at least once in the morning before taking it so that I don’t try to put a stop to something that is already in motion, so to speak. Because of this, when I have an important day ahead of me, I have to structure my day in a certain way. The other day I had a 10:00 a.m. meeting only 15 minutes from my house and I had to wake up at 7:00 a.m. to make sure I had time to get everything where I needed it to be. I would normally NEVER give myself that much time in the morning. I would rather sleep in than spend time getting ready. I went on a vacation in December with three of my close friends and I had to wake up an hour earlier than them every day for this same reason. Luckily, this worked for the most part and my IBS had very little impact on this trip.
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So why am I sharing all of this? For a few reasons. The main reason is that it is nice to find other people’s posts online that I relate to on this topic, and if even one person relates to this I will feel good about that.
Side note, one of my favorite posts on this topic has been: http://www.thedebrief.co.uk/news/opinion/women-in-their-early-20s-are-more-likely-to-suffer-from-ibs-than-any-other-group-so-why-is-toilet-chat-still-so-taboo-20150334240
One of my favorite quotes from this article that really speaks to the judgment piece I mentioned earlier is: If you’ve got the flu, the office sympathises (or tells you to piss off home and stop infecting everyone), but if you dare to mention so much as a stomach ache eyes roll and you’re told to get over it or take paracetomol. And if you do dare to say, ‘Eugh, my IBD/IBS is playing up today,’ you’ll either be faced with a million questions (that you won’t want to answer), or people will squirm in their seat. And that’ll just make you want to scream, ‘Does that make you feel uncomfortable? Does it? Well it makes me feel uncomfortable too, I’m in total agony AND YOU SHOULD BE IMPRESSED THAT I EVEN MADE IT IN TODAY
Another reason is that these issues are not something people talk about much, and I think that should change. I am hoping that as time goes on, people will start talking about this in a more natural way. I am hoping that the super awkward Xifaxan superbowl commercial from this past game is a sign that things are changing.
Another side note, as awkward and weird as that ad was, if anyone knows where you can purchase the Xifaxan mascot as a stuffed animal, my mom has promised to buy it for me.
I mean, I was at a baseball game the other day and this basically WAS me. I don’t have to take presecription medication (yet) but I prepared with Imodium so I could enjoy ballpark food and things went pretty well.
All in all, having IBS really sucks. But I try not to complain too much because it could have been much worse. The things I was being tested for before coming to an IBS diagnosis — Crohn’s, Colitis, etc. — could have been way worse. And as I said, even in the IBS realm, my symptoms are not as serious as some other people’s. I am also at a time in my life where 90% of the time the issue is manageable. I did extensive traveling and adventurous activities in college and my young 20s, things that would have been a lot more difficult with IBS, so I’m also thankful this issue didn’t manifest itself until now. Now between work and school, the rare times I am able to do those things, I can usually plan ahead and make it work.
If you know someone with IBS and don’t really know how to help them, the biggest thing you can do is let them take care of themselves in whatever way they need to, even if that means minor inconveniences for you, such as more frequent bathroom breaks when you’re together or utilizing specific types of transportation. Also, if they have seemingly weird requests, just go with it even if it doesn’t make sense to you. For example, if I have to be in the car for awhile, I feel much better when I am driving. When someone else is driving, I start thinking things like “Oh wow it would really suck if I had to use the bathroom right now” and suddenly I have to go. I feel guilty asking people to pull over, which makes me feel worse, and it is a never-ending cycle. When I am driving, I am more focused on driving than on how I feel. I also feel more in control of my own destiny. If I have to pull over at the last minute, I don’t feel as guilty about it.
But, the biggest thing you can do for someone with IBS is try to be sympathetic and non-judgmental. One of the most stressful thoughts an IBS sufferer can have is what will happen if they don’t make it to a bathroom, and as I said, for me personally it is this type of stress that often makes the symptoms worse. If you are the type of friend who your IBS-suffering friend knows they can be around and won’t judge them IF the worst of the worst were to happen, you are already doing a great job at helping them.
If you made it all the way to the end of this you are probably either have IBS or know someone who does, so I hope you either found this post relatable or educational. I am not an expert on this topic and I’m sure my thoughts on it will change as the years go on. But, this has been my experience and I hope that you have gotten something out of it by me sharing it.
