Sunday, April 1, 2012

Dude, TMI. (Part One)

I don’t like talking about poop. In fact, there was a whole decade of my life during which I staunchly insisted that I do not poop. Because it’s gross. And smelly. And, really, no one needs to know what I do in my bathroom. Unfortunately, my desire to avoid the poopy talk had a severe unintended consequence. Over the course of about five years, I became so sick that I didn’t want to leave the house. And almost no one knew.

Now, before I get started, I will warn you that I am holding nothing back. Should you continue reading, you are going to learn a LOT about me and poop and other gross things. Trust me when I say that I am a whole lot more embarrassed to write this than you will be to read it. Also, you should read it, because finally opening up about my problems is what gave me the courage and fortitude to fix them, and it just might help you too. Okay, warning issued. Here we go.

Too Much Information.

It started back in 2004. I had been out of college for a little over a year. In that time, I had traveled to Europe, got a great job, and was finally enjoying life after a very difficult time dealing with the loss of my mother and trying to get through school with a ton of very adult problems on my rather petite shoulders. I was putting my life together, and it felt really good. Until that night…

I woke up in a panic with just about the worst pain in my abdomen that I had ever felt. Just for reference, I had migraines throughout my life, and I’d been hospitalized and prescribed codeine for my insanely terrible menstrual cramps, so I know a thing or two about pain. But this…

It was so bad that I couldn’t help but cry. I crawled to the bathroom because it hurt so much that I really thought I was going to throw up. I laid on the cold floor, shaking and crying, trying to figure out how I could wake my roommate down the hall so I could go to the hospital. After what felt like hours, but was probably only 10 minutes or so, I suddenly knew that I wasn’t going to throw up. Rather, I had better get my tush onto that toilet or things were about to get very messy. I won’t go into detail here (did I mention I don’t like to talk about poop), but believe me, some very nasty stuff came out of me. Afterward, the pain began to subside, and eventually, I was even able to crawl back into bed and get some much-needed rest.

What the heck happened to me? Food poisoning was my best guess. An isolated incident that need not ever repeat itself. I mentioned my cramps to my roommate, but that was where things ended. Or, at least, I hoped that’s where they would end.

Later that year, my new boyfriend (now husband) brought me home for the holidays to meet his family. His dad and step-mom lived in a quaint little house that had only one bathroom, which was attached to their bedroom. The first night we stayed there, the Pain struck again. I was afraid to go into the bathroom because I didn’t want to wake my boyfriend’s parents with my whimpering, or worse, the mortifying sounds of my impeding gnarly bowel movement. So instead, I laid on the floor in the living room, shaking and crying, sweating and shivering. It took longer to pass this time, maybe because of the lack of bathroom, but it did eventually go away. Once again, I went back to bed with no one the wiser.

Although I didn’t have another bout of cramps for a long time after that, I noticed, through the ensuing years of graduate school, that I was having more and more GI problems. The changes were slow, though, so it was easy to discount them or ascribe them to some minor issue. Looking back now, it’s amazing to me how many warning signs and symptoms I was able to rationalize away.

For years, going all the way back to my college days, I had heart burn every morning. I thought it was just hunger. I also started having more and more gas. It seemed like I was bloated all the time. I told myself that I probably just had acid reflux disease and perhaps some of my troubles with dairy as an infant were returning. And, as migraines and lightheadedness became more frequent, I tried to drink more water and lighten my backpack. My husband began complaining that I had bad breath. I was mortified and would cry any time he mentioned it. I tried brushing my teeth more often, using more mouthwash, chewing gum incessantly, and even taking breath pills. Unfortunately, nothing worked because, as my husband told me, it wasn’t coming from my mouth but from somewhere inside of me. I felt ugly and repulsive and totally helpless.

By the time I was half way through grad school, I would go for about three days without a bowel movement, feeling cramped and bloated and sluggish. I would go sit on the toilet and literally pray for something to come out and give me some relief. On day four or so, all of a sudden, everything that had been building up inside of me would come out, all at once, in the most noisy and embarrassing way possible. I hated those days. I worked over an hour away from home, so all of this was happening at work, in the same bathroom used by my professors, colleagues, and even students. When these urges started, I was often in class or otherwise unable to run to the bathroom. Waiting induced the baby version of the cramps I had felt on the cold bathroom floor all those years before. Despite this obvious indication that something was very wrong with me, I actually tried to convince myself that this was normal. Don’t people always say you ought to be “regular”? Well, my three days off, one day on, BM schedule was pretty regular!

Eventually, I decided to ask my doctor about my digestive issues. It did not go well. I was so embarrassed by the things I was going to have to talk about, and overwhelmed by the anxiety my illness was causing me, that I was in tears before she even walked into the room. I tried to explain my “cycle” and the weird things that were coming out of me. You see, most people would describe their poo as a log or snake or tube, but mine (when I had any at all) looked like a pile of deer droppings. And, it was orange. The doctor took one look at me, emotionally distraught and freaking out, and gave me a referral to speak with a counselor. In her eyes, my distress over talking about poop was more concerning than my actual poopy problems. Eventually, she also offered to run some tests on a “sample” to make sure I didn’t have a parasite or infection.

I went home and, after several days of trying, was finally able to collect my sample. I remember being totally embarrassed about it because you could actually see the bits of tomato and little avocado strings from the guacamole I had eaten a couple of days beforehand. It turns out that I didn’t have a parasite or an infection. My test results came out totally normal. Forgetting, of course, the fact that you could SEE my FOOD in my poo! You know, the stuff your body is supposed to DIGEST. But since they didn’t comment on it, I again assumed that this was okay. Perhaps I was just blowing things out of proportion.

It was at about this time that a good friend of mine began having worsening symptoms from some mysterious illness that had plagued her for years. She started opening up to me about some of her more embarrassing symptoms, and that’s when things finally started to change. We compared notes and shared what information we’d been able to find online. Hearing her describe her GI problems, I realized just how crazy and wrong all of it sounded. I started to believe that I was also sick and deserved to get better.

Luckily for my friend, she was able to figure out that she has Celiac disease, an autoimmune disorder that causes your body to attack a protein called gluten that is found in wheat, barley, and rye. Unfortunately, the body attacks itself along with the gluten. This can lead to a myriad of problems, GI and otherwise. When my friend cut out gluten, she had an almost miraculous recovery. It took all of four days, and her life was totally changed. Decades of symptoms disappeared, and she was like a new person – vibrant, healthy, and happy. Watching her journey made me eager to find my cure as well.

I went to a second doctor, this time with more confidence. I described all my symptoms and even suggested taking a Celiac test. The doctor responded with the verbal equivalent of a pat on the head. He told me I had a condition called IBS – Irritable Bowel Syndrome. He said I should try eating more fiber but not to expect things to change. This was just a condition I had to learn to live with.

My friend had also been diagnosed with IBS before finding out she had Celiac, so I didn’t put much stock in that as a “diagnosis”. I went home, feeling alone and unsure how to proceed. But my body was quick to remind me that this was NOT all in my head. I went to the bathroom one day, and after doing my business, I looked down into a bowl full of blood. That was the last straw.

It's not IBS.

I decided it was time to leave the medical establishment behind and find my own path back to health. I started on a strict elimination diet. First, I tried getting rid of gluten. I quickly felt better, but I still had GI problems now and then. In fact, while attending a conference, I had a week-long bout of diarrhea, with painful cramps, and a whole lot of embarrassment. But clearing my body of gluten made it easier to pinpoint the other foods that were giving me problems. I quickly identified dairy as the main culprit. Once I eliminated any and all dairy, all my symptoms went away. All the GI distress, bad breath, cramps, bloating, gas, irregularity, and even that damn heartburn! When I found out there were dairy derivatives in my allergy medicine, I switched to a different brand, and my dizzy spells disappeared too. I found I could even tolerate some gluten in my diet as long as there was no dairy.

Eliminating dairy and most gluten meant changing my whole approach to food. I could no longer eat at restaurants with ease or buy processed packaged foods. In a way, though, this was a blessing in disguise. Changing my diet to include more fresh produce, whole unprocessed foods, and almost exclusively meals I cooked myself, flooded my body with the nutrient-dense foods we all need to be truly healthy. The migraines I’d suffered through since elementary school went away, probably because my new diet helped me get more vitamin D. Over the ensuing months and years, my condition continued to improve. And, as my body returned to normal, I finally remembered what normal actually felt like.

It saddens me to think about how long I suffered in silence. It frustrates me that, when I finally did speak up, I was told to seek counseling and that my body was simply defective – nothing could be done. That wasn’t true. There was something I could do, and it gave me my life back. The one thing I was not able to understand was how I ended up so sensitive to dairy. I had trouble with milk as a baby, but that seemed to pass with time. All the way through high school and college, I had enjoyed pizza and cheese and all other manner of dairy. What changed? And could it ever change back?

These were the questions taking up space in the back of my mind when I attended the Ancestral Health Symposium last August. There, I met so many people with similar stories – long illnesses caused by food intolerance, usually misdiagnosed by doctors. That is also where I met Tim, who finally had some answers for me about why I got sick, and what I could do to not only manage my symptoms by avoiding certain foods, but to actual heal my body.

(The rest of the story will appear in Part Two.)

1 comment:

  1. Thanks for sharing, takes lots of guts to talk about all this stuff! I had a similar thought at AHS - namely, that speaking about bowel movements/digestion is so taboo despite how central digestive health is to people's wellbeing. Even at AHS, at a talk that mentioned digestive issues over and over again, someone told me, in a hushed whisper, that they had severe "d," at one point in their lives. I didn't even know what "d" was, and it didn't hit me later that the person was trying to be discreet about diarrhea. If this person couldn't be comfortable talking about this with someone at a conference that is pretty much all about digestive health, then who can? I totally agree that what is most sad is how isolating, and ultimately health-progress-hampering it must be to not be able to speak about these things. In my experience, people more openly speak about having cancer than digestive problems.