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.
7 comments:
Hi Rachel,
I suffer too. I have waves. I have the pain, bonding time with my bathroom. I have good days and bad. I have intense nausea on the bad days. My bad weeks are kick started by food poisoning too (did you know you can get that from soft pretzels at a movie theatre... neither did I until recently!).
I switched to a vegetarian diet (bordering on vegan) to help work out my food issues (animal fats are my big problem). People look at me funny too. They feel bad that I can't eat what they eat, no matter how great it smells. I don't want to offend people, I have and will suffer in silence so as not to bring on the 'sad face'. People just don't understand most of the time. I tell them in a perfect world, I'd live in a bubble, eat lettuce leaves and drink only water. I also suffer from Migraines so thats a lovely combo. when my stomach is upset I don't like to eat too much (if at all) however that can give me a migraine so the cycle starts, which do I pick? head or tummy? which can I work through?
For a lot of migraine sufferers we get our pain dismissed as 'a bad headache' which its not... now I have the unique experience of having people believe my migraines are real and painful but doubt my stomach issues. The most frequent comment I get is 'you're not pregnant are you'.... if only it were that simple!!! 9 months and then done! poof be gone with you and I can point a finger at the cause.
I've had tests done, and the result was 'since we didn't find anything, it must be IBS.'
I've started to follow you on twitter. We call those who suffer along with us 'spoonies' after the spoon theory:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
We may not share identical symptoms, or even identical flareups.... but I get you. We share good days and bad. And that is always a comfort to know you're not alone in that. *HUGS*
Much Love
MaritimeGypsy
I have pretty much switched to a vegetarian diet as well, except for turkey. I just found that I would get sick more often when I did eat meat. I guess turkey is lean enough that it doesn't cause me problems.
And you are the first person I've met that has the migraine + IBS combo too. I attribute mine to more than just not being able to eat when I'm sick (my family's lovely hormones cause many of mine), but they definitely get worse when I'm feeling icky and don't want to eat. Such a horrible combination.
Thanks for following me- I've also decided to start up a blog dedicated to writing about IBS flareups and other related things if you'd like to read it.
rachelslifewithibs.blogspot.com
So far, I only transferred this post over, but I'm going to try to update it frequently. It's nice to be able to get in contact with people who understand more about what you're going through.
*hugs your face* I never knew it was that hard for sufferers or that frequent.
(more hugs)
That sucks so bad, and it's sad how people take good health for granted. I couldn't imagine being ULTRA CAREFUL for what I eat... MORE MORE HUGS!!
wow. So, I am a bit of a hypochondriac so I try not to read symptoms of things, IBS was one of them. No, I don't think I have it (surprisingly/yet) but thanks to this blog I may be able to help a friend who seems to go in waves like you were talking about. I often feel so bad for her, but we have no idea what to do..and the drs never say that. I'll pass this along to her.
I loved reading your post.
For once I felt like someone REALLY understood what I'm going through. As a 21 year old senior at the largest university, I find it REALLY difficult to lead a normal life with IBS. I have spent countless number of weekends being sober surrounded by drunk people. It's hard not being able to participate in normal social activities. It's depressing and lonely.
You said it perfectly when you said, "They are fighting a silent battle and they are most likely alone." Man o man could that be a tagline of my life.
Luckily I'm like you though; I've been dating the same guy for over 4 years and he's amazing. However, when it comes to friends it's definitely harder to explain to them what you're going through.
Anyways thanks again for your post; it's very refreshing!
Lindsay- thanks for commenting! After writing this post, I felt so much better letting it out in the open, I made a blog dedicated to blogging about IBS. Feel free to follow it or add it to your RSS reader. rachelslifewithIBS.blogspot.com
I'm glad I'm not the only one who will be sober this weekend! I feel like I have fewer friends because none of my friends I'd made at college were ok with me not drinking, especially once I turned 21. I was deemed lame or something and they just stopped hanging out with me. After starting this blog, it's been nice to hear other people's stories...I feel like less of a freak because I realize there are more people like me out there.
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