10.30.2009

I Hate My Guts

So.

This is one of those posts that just must begin with just that. So. Considering what I'm about to write is something I know not only a lot about, but am quite the expert in, you'd think this wouldn't be too hard. I know it's something a girl's gotta do, since in the future when I mention this issue, I need a frame of reference, something to link back to for new readers. But it is hard. I'm not sure where to begin. And I'm warning you now, I don't want sympathy.

A brief warning: This may get graphic. You may leave at this point if you want to, I'm going to now discuss the fact that I HATE MY GUTS. Continue at your own risk, but consider yourself warned.

I guess I'll just start at the beginning. Another warning, this will probably be a very loooong post, so again, if you don't have like an hour and thirty five minutes to spare, feel free to leave. I won't be mad at you.

When I was sixteen, I got this weird feeling under my rib cage. This burning, traumatizing, painful feeling that came and went, but when it came, I would be bent over in agony. My pediatrician sent me in for an Upper G.I. test, which showed massive acid reflux and possibly an ulcer. I was told to relax and try some stress-reduction techniques. I guess what I did worked, because the problem went away, and never came back. But over the next few years, between 16-17, my symptoms also included running to the bathroom on a more-than-should-be-normal basis. I've always had a healthy appetite, so I never really lost weight, and doctors therefore were not worried about something like Crohn's Disease.

SIDE NOTE: My mom has Crohn's Disease. My Grandpa, my mom's dad, had it as well.

Throughout the end of high school, I was a very normal kid. I was on the cheer leading squad and participated heavily in school activities and volunteering. I controlled the urgent bathroom trips with Imodium, but to be honest, I just got used to it, and looking back, don't think it really ever affected my life all that much. I just dealt with it.

Three weeks before senior prom, I went to sleep on a Thursday night with a belly ache. I looked my mom in the eye as she came in to say goodnight, and I said, "Mom, I think my appendix is bursting." She felt my forehead, and said, "Honey, if your appendix were bursting you'd have a fever, you feel fine to me." I went to bed, and the next day was miserable. I woke up, had breakfast, and she drove me to school like she did everyday, and again, I looked at her and said, "Mom, something isn't right, I just feel so sick." She told me to wait it out, and by the afternoon, if I still didn't feel better, she'd call the doctor. It didn't take more than three hours for me to call her and have her come pick me back up. My stomach was in the worst pain I had ever felt, although I couldn't really have told you exactly where it hurt, it just hurt. She picked me up around 11am, and called the doctor when we got home, who said he could see me at 4pm. The next five hours seemed like an eternity, as I spent them on the couch watching the clock and counting down the minutes until my appointment.

When we got to the doctor, he basically said he thought I was fine, or possibly I could be having an ovarian cyst, but just to be sure, he sent us to the E.R. Another five hours went by, and by 9pm, when a surgeon finally came to see me, he took one look at me and said, "She needs to have her appendix out, NOW." And within 30 minutes, I was under anesthesia and in surgery.
When I woke up from the surgery, I kept asking, "Was it sick? Was my appendix sick?" And my mom kept saying, "Yes, honey, it was very sick. They said it looked like it had been sick for months, I'm so sorry, I should have listened to you the other night."

I stayed in the hospital for a few days. One of the days it snowed out the window and I hallucinated and thought the snowflakes were little green bugs. Morphine can make you think funny things.

I went to prom in my size 4 dress, which fit even better due to the weight loss I'd had in the hospital. I had a great summer, and started college with out a hitch. I was entirely convinced that my appendix had kept me in pain for all those years. And then I turned 19.

I was sharing a 2-bedroom apartment with my friend Justin, we had met in the dorms, he was a great guy from Boca Raton, Florida, and I liked him a lot (as a friend, we were always platonic). He even bought me an original VHS tape of Troop Beverly Hills for my birthday that year, the sweetest gift a guy-friend has ever given me since it's one of my favorite movies. I don't remember exactly when it started, but I just had diarrhea all the time. I felt like nothing I ate would stay in me for more than 20 minutes. So I started seeing a G.I. specialist. Almost two years after my appendectomy, this very astute doctor dug up the pathology report, and discovered that when I was 17 and had my appendix out, the report showed there was Crohn's Disease in my appendix. My mom and I just looked at each other, and said, "Oh my gosh! All this time, and we didn't know I had Crohn's?" The doctor said that to confirm the diagnosis, he'd need to do a colonoscopy, so one was scheduled for later that month.

SIDE NOTE: Please don't be scared if you ever have to have a colonoscopy. I swear it's the most over-rated thing. They drug you up so much, you don't know which way is up, and by the time you wake up you're such a happy camper you could seriously care less what they just did to you.

The day came of my first colonoscopy. I was excited to have it over with, hopeful of a diagnosis that they could treat, and went in with a smile on my face. And then I woke up, and the doctor said he found...NOTHING. "What did you say?" "Nothing." "What? I'm sorry, I think the drugs are still in full effect, you said you saw..." "Nothing. You look completely normal."

My diagnosis was the worst thing I could imagine. Irritable Bowel Syndrome. You know what one of the most common treatments for IBS is? Anti-depressants, because some people think, still to this day, that IBS IS ALL IN YOUR HEAD. I would like to take those people to the bathroom with me when I'm having an "episode" and show them just what NOTHING looks like.

I graduated college in 2004, and then moved out here to L.A. the summer after graduation to start grad school at FIDM. My symptoms continued off and on, although a new symptom began to express itself sometime in 2004. A little guy I like to call BLOATING. Now, I've heard women talk about bloating before, and usually they are experiencing a lack of going to the bathroom, not the opposite. I have not been constipated one day in my entire life. But I can empathize with those who have this symptom, as I've been told the pain from bloating that is felt is very similar to the pain I feel.


Around my second year here in L.A., I decided it was time to see another doctor out here and find out if anything new was happening inside my guts. I was still having the pain and bloating, and for a time the diarrhea got really bad, so I made an appointment. This doctor believed that the bloating I had was caused by Bacterial Overgrowth Disorder, and that I needed to have a test to prove it. Well, he was right. I tested off the charts. They started me immediately on antibiotics, and I thought the doctor and the diagnosis were both the end-all-be-all.
I. WAS. WRONG.

The symptoms never went away, despite the treatment. Upon re-testing for Bacterial Overgrowth I tested negative (or within a normal range) this time, and so we were back to square one. Another colonoscopy was scheduled. And yet again, it came back normal.

About a year and a half ago, my symptoms worsened again (keep in mind they come and go, it's just what they do and have always done) and I went to see a new doctor due to my insurance changing. This guy read my chart, looked me straight in the eye, and said, "I can tell just by looking at you that you eat too fast. I can tell also because you talk too fast. That, and you need to lose 20 lbs. Is there anything else I can help you with?" I left in tears, and called The Boyfriend who got more mad than I'd ever heard him, it was all I could do to keep him from heading straight over to the doctor's office to beat him up. When I was done crying and feeling sorry for myself, I sat myself down for a long, hard talk.

It was true, I did need to lose some weight. Compared to the patients in his office that day, most looking like they came straight over from a concentration camp, I did appear well-fed. Fleshy, even. So I stepped on the scale, and nearly had a heart attack. I'm going to preface the next section by saying that I believe having IBS is equatable to that of going on and off a diet every other week, and I think it really screws with your metabolism. When I am having an episode, I don't eat very much, and my metabolism slows down. Most of the time when I'm sick, I just sit there and dream about what I'm going to eat once I feel better. And then I often would eat too much once the symptoms went away. So with an already slowed-down metabolism, I ate too many calories, and had too much of a surplus, which packed on the pounds. I was pretty much wearing the same size clothes I had moved out to L.A. with. Maybe I bought a size or two bigger in jeans, but basically I didn't feel fat. I needed to lose the weight. "Maybe this will help my tummy troubles," I thought. This is when I began running. Over the next six months I lost the 20 lbs, but kept the tummy trouble.

I now go back to the original doctor in Colorado once a year for a check-up. Basically, my diagnosis of IBS is standing, for now, although my mom had problems like mine her whole life, and wasn't diagnosed with Crohn's until she was 32. So I've got a few more years. I have an arsenal of medication for the disease, and recently have found a combination that seems to work.

But I don't want to medicate myself for the rest of my life. Which is why I went to see an allergist a few weeks ago, the day I started having symptoms of the flu. I never told you the results of the test, because then I got the flu, and ran the marathon and just got busy. But I have to tell you, the test results were astounding. I'm allergic to the following items:

UPDATE! As of 12/13/13 HERE IS MY REVISED LIST. Items that I am no longer allergic to are crossed out:
  • Wheat
  • Rye
  • Barley
  • Buckwheat
  • Corn
  • Rice
  • Almonds
  • Pistachios
  • Hazelnuts
  • Pinto Beans
  • Eggplant
  • Oranges
  • Cherries
  • Cod
  • Halibut
  • Oysters +
  • Citric Acid
  • MSG
  • Flaxseeds
  • Sunflower Seeds, Products, Oils
  • SOY


So basically,  I was poisoning myself. And you're smart, so you've put two-and-two together and realized that I knew all of this during carbo-loading week. Yes, folks, I did.

Denial ain't just a river in Egypt.

And so for the last seven days, I've been 100% staying away from anything I'm allergic to. This means, essentially, no grains. I've been eating a lot of potatoes and peanut butter. A runner needs carbs. And I've been making chili filled with beans (not pinto!) and drinking lots of green monster smoothies. Salads and gluten-free foods are my new best friends. I need to keep this up for the next three weeks without a hitch, and then, I can slowly add back one thing at a time for a few weeks, and if my symptoms return, or get worse, I'll know that I just can't eat that. For the last week, I've been feeling great. But you have to remember, my problems have always come and gone. I'm not sick everyday.

Having something like this is frustrating. It interferes with my life in more ways than one. But it's me and who I am. And I've made peace with my stomach. I use the phrase "I hate my guts" very sparingly, as I love my body and want to nourish it and take care of it. It carried me through 7 years of college and grad school, my first marathon and first promotion. My body does incredible things. I really can't fault it for me putting poison into it for the last 27 years. I wouldn't expect my car to run on water, and I certainly don't expect my body to run on garbage.

Nobody's perfect.

13 comments :

  1. WOW. Ironically I had a lot of probs a couple years back, not like what you're experiencing but because my Dad has Crohn's and I had probs that made the docs want to give me a colonoscopy. Test results came back negative and they never figured out what was wrong... and I never had probs after that. Randomness.

    Glad you finally figured out a plan of action and I'm sorry you spent so many years in pain! You poor thing!!!

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  2. Oh my goodness. This was a very long blog, you weren't lying haha. But I read it all.

    This seems so stressful, you have so much to deal with and I can't believe that list of everything you're allergic to... oh my! Thanks for sharing this with us, it was definitely a great read and I definitely felt like I really got to know you while reading this, and those pictures of the bloating are UNREAL, that is absolutely crazy!!!

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  3. I'm so sorry it took so long to figure out what's been going on with you! I'm also sorry about that stupid doctor. Jackass.

    Luckily, food has seriously evolved and the number of things you can make that you aren't allergic to are endless. Everything I've cooked this week I thought of whether or not it had ingredients that you could eat. I'm going to start paying closer attention so I can have Erin-specific meals. :)

    You're pretty awesome for sharing all this.
    Just so you know.

    xo

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  4. Love this post. I've been tested for many of the same things as you and also was given the diagnosis of IBS. Just saw an allergist last week and not too much popped up...just grass, ragweed and dust. Mind you,there are foods that fall under grass and ragweed that could cause stomach bloating/gas/upset. Your photos remind me very much of my belly. Only, I look pretty flat in the morning and 6 months pregnant by bedtime. Not the best ego booster for sure.

    Thanks for sharing your story...

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  5. I read the whole post, I didn't leave.

    I can feel what you're saying because I've been there too. Miraculously, my bout with IBS or whatever the doctors didn't discover ended a year ago. The bloating tummy was a regular everyday thing for me before so with running to the bathroom and really creating a mess in there.

    I've been taking Nexium and a lot of other meds before. Then suddenly, all symptoms stopped. I don't know what happened. I only remember that I drank red wine every night for a week straight then everything became normal again.

    Thanks for sharing this story.

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  6. SO sorry you have to go through this. Some of the the things you were saying i was like yup, me too. I can't stand when people say to me ibs is in my head. no, it isn't, yes stress plays a factor in my episodes but I still have to be careful. I can eat a lot of salad, no whole wheat, and alcohol causes episodes. it's really stressful when I want to go out and eat and drink with friends and i have to make sure i am home by the end of the night "just in case". I had a blood test to check for crohns or ulcerative colitis, they said I could do a colonoscopy but that terrified me, but thanks for saying it really isn't a big deal. maybe next time it is suggested i will actually go through with it.

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  7. Has anyone ever tested you for Celiac disease?

    I totally relate to what you're going through, especially the bloating and bathroom issues. I've noticed I'm sensitive to certain foods and am also bothered by these foods more at certain times of the month.

    I'm sorry to hear you're going through such an aggravating health issue and I can't believe the doctor in LA told you eat too fast because you talk too fast - that is the craziest thing I ever heard.

    Looking forward to hear how this works for you.

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  8. I used to have a lot of stomach problems too. I cut caffeine and dairy out of my diet and suddenly was feeling much better. Some things set me off, and seeds in rye bread make my belly bloat up like yours in the photo.

    My dad was recently diagnosed with Celiacs and had to cut out a lot of what you do. He's gotten used to it though and is pretty happy with his diet now. Let me know if you ever need some good gluten free recipes!

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  9. Wow. I'm so sorry to hear that you have to go through all this! It must be so frustrating. Thank you for sharing. That doctor you went to is such a jerk. I can't believe they allow people like that to practice medicine. What, does he prescribe anti-depression drugs to every patient of his after he dishes out his snarky remarks? Geez. The list of things you're allergic to is very long. I admire your strength!

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  10. Great post! Sorry to hear all that. This is frustrating. I was once tested too and luckily no disease or allergy :) And I heard and read that corn allergy is one of the worst ones because corn is pretty much in everything! :(
    Btw, I eat fast, too...just like I talk fast too. ;)

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  11. I have had alot of stomach issues too and have learned what bothers it and what doesn't. I have never been diagnosed with celiac disease but find that when I eat gluten free, I feel so much better. Glad that you found a solution for yourself! :)

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  12. Erin...me too!! We always have everything in common! I found out a few years ago that I have Celiac Disease, which means that I cannot tolerate gluten, wheat, barley, oats, rye, malt, grain alcohol, "natural flavors," MSG, or Modified Food Starch. Basically, anything that is processed.
    Celiac Disease is incredibly underdiagnosed, because it manifests itself in so many different ways for each patient. I had rheumatoid arthritis for years (in addition to stomach issues, which seemed unrelated), and my brother had bacne that we thought was from his sweaty hockey pads-- who knew it was all from eating bread (and everything else!).
    By the way, even when you follow the gluten-free diet, you must be careful about things you'd assume should be ok, like rice, beans, corn chips and cheese. Many times these things are dusted or polished in flour that isn't even on the label. Even when it does say gluten-free, keep in mind that there is no national standard for testing-- and when it's made in Europe, they still allow a small portion of gluten in their "gluten-free" items.
    I hope you feel better soon!!!

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Thanks for your comments! Hope you stop by again soon! XO!