Thursday, November 12, 2009

My Life with IBS

A friend was helping me think of blog ideas, and he asked me to write this one. He wanted to know how my perspective on life has changed with IBS.

I'll start out by giving you a little background info. I was diagnosed in 2nd grade with IBS after undergoing months and months of tests. I visited doctor after doctor, but none of them could figure out why I was having stomach cramps, intense gut pain, and abnormal stools. I also couldn't eat what my sisters could without having problems. This was when my view of the world began to change.

With IBS, it is very common to have what I call an "episode" when I get nervous or stressed. I remember, on multiple occasions, being at an amusement park about to get on a scary ride and I had to drag my mom to the bathroom with me. Having two younger sisters, I got a ton of crap for this because when I didn't feel good, they had to leave. I felt absolutely horrible causing them to miss out, but they didn't know that. They usually would tell me they thought I was making it up. When I was only 7 years old, I began to realize that you can't count on family for everything.

I also realized that no matter how good of a person you are, you will always have to prove yourself. In 2nd grade, my stomach pains got so bad that I couldn't stand it. I would literally have to go to the nurse every day and lay down until it passed. After a few weeks of this my 2nd grade teacher BANNED me from going to the nurse's office. Most of you don't know me personally, but I would never do something like skipping class by going to the nurse's office. I pride myself on my morals, even way back then I did. I was heartbroken when Mrs. Marshall didn't believe that I actually needed to be in the nurse's office.

When I think back to that first wave of IBS, I think it's odd that my episodes never caused me to be afraid of food. Back then, my symptoms were mostly pain and the cramping, so I never quite associated the food with the problem. I should explain something- for a lot of people IBS comes in waves. They will have symptoms for a while, it will fade away, something will trigger another wave, and the IBS symptoms come back. For me, the incident that triggered my second wave was Buffalo Wild Wings. I had been eating it weekly (every Tuesday) for a really long time. One night after eating out with a bunch of friends, I spent the most miserable night of my life dealing with food poisoning.

After that night, I never thought it would lead to what it did. I thought that I would regain my strength and fill back up with fluids and I would be fine. But in the following week, I started to notice that things were very, very different before. The question that I was most asked in the period between the two waves was, "How the heck to you eat like that and stay so skinny?!" My family is blessed with skinny genes. Well, until a certain age. My metabolism was crazy fast and I could literally (and did) eat absolutely anything I wanted. So imagine my surprise when I ate a piece of pizza and felt sick. I don't want to make this a gross post, so when I say "I felt sick" just know that it was not pleasant and it caused me to have to spend whole days in bed/the bathroom. Side note: I have a phobia of vomit, so I have been so very lucky to not have that be one of my symptoms.

Anyway, my health has really gone downhill since that night at BWW. But I'm not talking about my health in this one, I'm talking about how it changed my perspective on life. Since this one started I have devolved into a messed up person (in my opinion). I look at labels of almost all the new food I buy to make sure it's not expired. I eat a small selection of foods that I know for sure don't make me sick. If a new food makes me sick, I avoid it for weeks or months. I hate doctors with a passion. Luckily, I have been able to salvage my professional relationship with them as a future pharmacist, but as a patient I avoid them. I think that they are too busy and don't spend enough time really working with their patients to figure out what's wrong.

When I say "I have IBS," I say that because all the doctors I went to couldn't figure out what was wrong with me. I went through test after test (even woke up halfway through my endoscopy), but they never could find anything too out of the ordinary with me. I do not expect doctors to be God. They don't know they answers to every problem, but I've had so many doctors do a test or two and say, "Well, we didn't find anything wrong, so it's probably just IBS." JUST IBS?!?! Do you know what it's like to live day to day wondering if what you put in your body is going to make you land in bed or the bathroom for the rest of the day. Do you know what it's like to dread 6pm because you'll have to decide yet again which one you want- spaghetti, cereal, oatmeal, spaghettios, rice or a turkey sandwich??? I can, and have many times, written down a list of what foods I can eat with 100% knowledge that I will not have a reaction to them. I HATE food now. I hate that I have to worry about what I'm eating, I hate that people see how thin I am and automatically assume I'm anorexic (luckily my weight is shooting back up so I don't have to deal with this as much), I hate that my boyfriend and I have stopped our weekly dinner dates because of this, I hate that my family constantly offers me food they know I can't have, and most of all I hate feeling like a freak.

Think of how much of your life revolves around food. When you go out with friends, where do you go? To the movies ("why can't you have popcorn?"), to a restaurant ("why can't you eat?"), to a bar ("why aren't you drinking?"- yes, I have to avoid alcohol, yet another thing I'm not amused by), to hang out at there house ("what do you want to eat?"). People give me funny looks when a teacher sends around a bag of candy and I pass it up. At work, people bring brownies and cookies they made all the time. "Hey there are cookies in the back, go get one." Once again, I get funny looks when I say, "Oh, no thanks." My point here is that almost everything we do involves food. When you are constantly turning down food, people start to assume. And they always assume the worst. They don't even try to understand that when someone offers me food, I don't see something yummy- I see a potential day wasted away laying in bed sick.

I haven't only changed into someone who is afraid of food, it has also affected my social life. Not only do I avoid any type of social gathering that involves food, I avoid pretty much everything. Now that this wave of IBS is going on almost 3 years now, it has seemed to started fading away, so I'm not as bad as I used to be. I used to refuse to ride in a car with anyone. No matter how far away we were going, I'd always drive separately. I wanted to ensure that if I started feeling sick (food isn't the only trigger), I'd be able to leave without dragging others with me or letting them know what was happening. Wherever I went, I had to make sure there was a bathroom I'd be able to use. If I didn't know where the bathroom was at a place, I wouldn't go. I usually just wouldn't go anyway. I spent so much of my time after that incident at BWW sick. It affected my study time, my relationship, my health, my everything.

IBS has morphed my life into something I don't like. I've spent the last 3 years researching, trying to figure out the right foods to eat to minimize symptoms, how to destress, I even read books detailing apparent IBS "cures." I'm doing better now, and trying to relearn how to be social. I try to slowly introduce new foods into my diet to see if I'm still sensitive to them. I relapse every now and then, but not near as often. The hardest part now seems to be teaching myself how to not be afraid of so many things- food is not as much of an enemy anymore, I can go out into public and make it back home just fine, I'm even trying to convince myself that doctors do want to help you. I don't know how much of a glimpse of the "IBS perspective" I've given you, but I hope that you'll realize that when people say they have IBS, it means so much more than that. They are fighting a silent battle and they are most likely alone.

Even though about 15% of the population has IBS, each of us experiences a different form of it. I've met many people in my life with IBS, but none of them have the same symptoms I do. That does not mean it's worse than having diabetes or something where there are very defined and common symptoms, it just means that no one really quite gets what I deal with. To some people, I may just look like a freak that needs a lot of help, but just like someone with cancer- I can't help that this happened to me nor can I change how my body reacts to the food I put in it. I can only try to avoid the symptoms and rejoice when I go without them for a while.

If you know anyone with IBS, I hope that you see them in a different light after this. And please, PLEASE no jokes about irritable bowel?

Want to know a little more about IBS? Here's the Wikipedia link.


  1. Hello Rachel,
    I came across your blog a couple of weeks ago, but I decided to start reading from the beginning. I am also suffering from IBS and had looked back at my life and realized that I have always struggled with it. I've always been a sick child; I now know it’s because of my weak immune system. I can relate to many things you have written. However, I am on the other side of the spectrum. I have always been chronically constipated. Growing up this is the only thing I’ve known about my stools and thought this was normal, but I've learned it’s not. Now, I also get the rumblings and urgency feelings, but nothing. Lately, it’s been shifting and I am all over the place between loose and hard bathroom runs. It’s hard and no one seems to get it. Well, amongst all my rambling I just wanted to let you know that I think you are brave to start a blog about this burden we carry. Not a lot people know what it is and don't get it when you try to explain it in the most non-detailed way. I hope that everything is going well for you and thanks for letting me and others know we aren't alone.
    P.S._ I have a huge phobia of the "v" word too and I have prohibited it and any variations of it around my house. Though on occasion my siblings say it to torture me.

  2. Hey Rachel, I stumbled across your blog today. I was diagnosed around a year ago with IBS, and up until that point I had always been a relatively ill child, and young adult. I never knew why, and it never crossed my mind until I read this. I unfortunately do have the "V" side effect that most don't get, so I have an intense fear of food now, and everything to do with body imagine. I lost sight of how to take care of my body and maintain the good health that is possible with this disease. I am starting a new journey of exploring my options.