You lost my what?

I took Effexor for about six months. My symptoms were far from nonexistent but they were more manageable. I had five or six good days each week so my "stomach" wasn't really disrupting my life much.

A little over a year ago the diarrhea started again on a daily basis. I wasted no time and saw my doctor two weeks into it. He wanted to send me back to the old Gastroenterologist, we'll call him Dr. Z. I refused to see Dr. Z so he told me he would make an appointment with the other doctor in Dr. Z's practice. The office called to confirm and I went in for my appointment. When I got there, the person at the desk informed me that I would be seeing Dr. Z. I told them I was there to see the other doctor and they told me no, I was Dr. Z's patient. I should have left then but I had taken the day off work and didn't want to wait any longer to see a doctor.

I went in to see Dr. Z and he was just as I remembered. Arrogant, pompous and unwilling to listen to what I had to tell him. He ordered four stool tests and told me I would have to make an appointment for a colonoscopy. I told him I would do so and left the office.

I dropped the stool samples off at the Dr.'s office that same day and went back to New York. My plan was to wait for the test results and then, well I didn't really have a plan.

A couple of days later, I called in for the test results and, of course, there weren't any. So I waited a few more days and called back again. The woman at the doctor's office told me the test results were normal. I asked about the other three and she told me there were results from two tests and both were normal. When I told her there were two more she said she would call the lab. She called me back a few hours later and apologized profusely - the lab had LOST MY SAMPLES! My social security number was on each of the samples. How could they lose them? Is this some sort of sick joke? Really? They lost my stool samples?

Then It Was Depression

I was on Effexor for almost a year. Was I depressed? Probably. I think it is difficult for anyone with a very active chronic illness not to suffer emotionally. I realize there are worse things that could happen. My illness is not terminal. I have a supportive family and a boyfriend who should be canonized. I am employed and my boss is incredibly understanding. Although it's not the best, my health insurance does pay for some of my expenses. I live in a place where I have access to some of the best doctors in the world. The list goes on and on but it is difficult to count your blessings when you are sick every day.

My first year of Crohn's was the worst year of my life. It's terrifying to watch your body deteriorate before your eyes. The uncertainty of not knowing what was wrong and the fear of what could be doing this was paralyzing. I went to work every morning but went to bed as soon as I got home. There were many, many mornings when I woke up and wasn't sure if I could physically or mentally get through another day. At my worst, I really did not want to live like this any longer.

It is difficult to accomplish in a day's time what was possible before I got sick. Simple thought processes become impossible when I am always in pain. The distraction of constant discomfort is hard to overcome. It's like going to work with a hangover every day.

The constant fear that my health coverage will fail me again is almost as anxiety inducing as the disease itself. Crossing that line into the red can be devastating.

Then there's the fear of leaving my apartment. The hour-long subway ride to work can be daunting. I have had to get off the train and run up to the street several times. The oh-my-god-I'm-not-going-to-make-it feeling is enough to make me want to never leave home again.

The guilt of canceling plans over and over is also a lot to deal with. No one can really understand what it's like to be sick so often for so long unless they have been through it.

It is difficult to deal with all of these emotions at once, especially when you are sick. I've never taken part in a support group or anything like that. Maybe I should have - or I should now. I'm sure it's comforting to spend time with people who can actually relate to what you're going through. I do spend time on ccfa.org (Crohn's and Colitis Foundation of America). Reading the forums is sometimes helpful. At least I know I'm not alone.

Then It Was IBS

Eventually I did feel better. I still had diarrhea several times each month but nothing like it was before. This went on for almost two years. I was off all of the medicine and was living a mostly normal life. I worked 40 hour weeks and worked on projects outside of work. I occasionally went out drinking with my friends. I didn't get enough sleep but I was fine.

Two years after the original colonoscopy my symptoms worsened. I went back to my primary care physician who thought it was Irritable Bowel Syndrome. He prescribed Effexor which, I was told, is an antidepressant that is sometimes effective against IBS. I was wary of this solution as I've heard about the side effects of antidepressants, but I certainly didn't want to go broke paying for tests which would all come out negative so I went for it.

I did feel better. I don't know if it was the stabilizing effects of the Effexor or a coincidence but my symptoms improved for a while. I was a little more sluggish on the Effexor but the only major side effect was a strain on my bank account. My insurance does not cover "mental health" treatments and Effexor is not FDA approved for the treatment of IBS.

I later found out that my doctor suspected that I was suffering from depression and I can see why. I only saw him a few times each year but every time I went to his office I found myself crying. I was terrified. I didn't want to starve and sleep away another year of my life. I had recovered financially and did not want to have collections agents after me again. Worst of all, I didn't know what was wrong with me. My test results were always normal and I was beginning to think I was crazy.

Results

This is the report I received after my first colonoscopy in 2005.

The duodenal biopsies performed were completely normal; there was absolutely no evidence that you have or ever had giardiasis. There were no features of a malabsorptive illness such as gluten sensitive enteropathy. The biopsies were normal.

The biopsies of your colon did reveal some mild resolving inflammation consistent with acute self-limited colitis. This condition is secondary to a viral or bacterial colonic infection which is acquired by consuming contaminated food or water. It is extraordinarily common. Thirty percent of patients may develop persistent symptoms that can last as long as twelve weeks.

My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.

In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice. In rare instances, repeat colonoscopy with biopsy is necessary to be certain that occult inflammatory bowel disease, Crohn's Disease, had not presented itself in an unusual fashion.

My clinical impression is that you will become completely well over the next several weeks to months and should have no long-term difficulties. I know this is frustrating to you if your symptoms persist, but I can not change that.

A copy of this letter with this information has been forwarded to your primary care physician, Dr. _________, along with your colonoscopy, endoscopy and pathology reports.

Reading this letter again now, it seems perfectly reasonable. I now know that it often takes years for a Crohn's diagnosis. I know that Crohn's is not always detected through a colonoscopy and my misdiagnosis was the norm. However, at the time I was frustrated, sick, broke and unhappy with my experience.

The GI doctor I saw rarely listened to what I had to say. He frequently cut me off in the middle of a sentence and even indicated at some points that I was exaggerating my symptoms. He was incredibly pompous and I should have seen someone else, but I was young, inexperienced and confused.

Also, looking back over this letter, I realize there are some red flags. For instance:

My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.

Pepto-Bismol is useless against my symptoms. It was not helping me to begin with. Had the doctor listened to me when I spoke to him, he would have known that and maybe given me some helpful advice.

In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice.

When I received this letter, I was already into my 15th or 16th week of persistent symptoms. If it is rare for my symptoms to persist beyond 12 weeks and it is essential for me to seek further medical advice in that instance, shouldn't he have dug a little deeper? Did he want me to wait another 12 weeks?

In a perfect world I would have gotten a second opinion and possibly found out it was Crohn's four years ago. In this imperfect world, I was out of money which meant I was out of options.

If I'd only known then what I know now...

Here's Where It Gets Relevant

So it turned out that I had just talked myself into the parasite because I didn't want to have a colonoscopy (who does?). Not only were the symptoms not actually improving after the Flagyl but they were getting worse. I wasn't thin before I got sick, but at this point I had lost 40 pounds and couldn't afford to lose any more. My hair was falling out and I was having difficulty gathering the energy (physically and emotionally) to get out of bed in the morning.

I was making very little money, I had begun paying back my student loans, I had a new (used) car payment and I had spent what little I had left on my 20% cut of the doctor visits. I decided I would be better off traveling to my hometown for doctor visits. I already had a trusted doctor there and the bills were half as much. To my dismay, my old doctor also thought I needed a colonoscopy and an endoscopy. I reluctantly made an appointment with the Gastro my mother had seen for a routine colonoscopy the year before.

I made sure to research the costs that would be involved with this colonoscopy. The GI I was seeing was in my network so I got the negotiated discount and everything was covered. Fantastic. Finally I would find out what was wrong with me, the doctor would fix it and all would be well.

I took a day off work and made the three hour trip back to my parents house. I survived the prep and went in for my scopes. It went as well as a colonoscopy/endoscopy could go. I woke up, spoke briefly with the doctor and went home to eat.

As I waited (and waited) for my biopsy results, I began receiving bills from the procedure. I had expected to pay something, you know - a couple hundred dollars, so the first bill or two were fine. Then I was hit with the anesthesiologist's bill. Even though he was in the same room as the GI for the procedure, he was not in my network and he didn't come cheap. This was nothing compared to the "facilities charges" they soon sent my way. It cost me $2,000 for USE OF THE ROOM where they performed the procedure! $2,000! That was almost 10% of my yearly income! These charges were literally for occupying space inside of a building during the colonoscopy. They were charging me rent.

I obviously didn't have this kind of money lying around. This is the first time my insurance company and the American health care system let me down. I was just out of school and had no idea what I was doing. I never thought to call the insurance company and harass them until they covered something. All I could do was pay the bill.

I set up my own payment plan and sent $10 each month to the doctor. They were not amused. I soon heard from a collections agent. I could not believe that, in the midst of this health crisis, collections was after me. What does one do in this situation?

I decided to keep paying my $10 each month on the logic that they couldn't do anything as long as I was paying, right? What were they going to do, take the colonoscopy back?

In The Beginning...

The following is a letter I wrote in 2005 to a doctor who works in the same hospital as my mother. This was less than halfway through my first year of Crohn's. I was incredibly disappointed with the doctors I had seen but had already spent a fortune and didn't want to find another doctor. If I had had any idea what was to come...

Regular Symptoms

A few months ago (somewhere between 2 and 3) I started to have frequent diarrhea. I think, at first, it started out once a day a few days a week. It progressively became much more frequent. Toward the end (last Friday) it was happening 4-6 days each week. Each day a specific chain of events would occur. After I ate I would first get sharp pains in my stomach and/or nausea. This was followed by cramps in my lower abdomen which led to a sudden urge to run to the bathroom. My stool became watery.

Resulting Symptoms

Eventually I became exhausted, apathetic, and (some may say) irritable. My nails became brittle and I had circles under my eyes like never before. They actually extended to the inside corners of my eyes at one point. I never had a problem with sleeping or waking up in the middle of the night because I had to go to the bathroom. I’m not sure if I lost weight as I haven’t weighed myself in quite some time, but I have noticed ribs and collar bones that haven’t caught my attention in the past.

Patterns

I tried to find patterns: did certain foods trigger a reaction, certain times of day… I couldn't find any patterns. Some days I would be at work late because I was stuck in the bathroom hours after I had eaten lunch. Some days I was in the bathroom shortly after eating a plain bagel for breakfast. I tried not drinking coffee, nothing really helped.

Less Regular Symptoms

I find myself clenching my teeth. (I also read that this could be a symptom of allergies.) One day I had a metallic taste in my mouth. Two or three times, I skipped lunch. I’m not sure if I was not hungry or just so nauseous that I couldn't eat. Toward the end I also had some heartburn, but that was only after I began taking the “antispasmodic”.

Self-Medication

I started taking Imodium shortly after the diarrhea began. I later began taking a multivitamin. Neither of these seemed to have an effect.

Dr.s

On Monday April 25^th, I finally saw a Dr. He thought that it was either IBS or Crohn’s Disease. He did blood work and prescribed Hyoscyamine Sulfate. The blood work came back. It was mostly normal except for “NEUTROPHILS, ABSOLUTE” were 8500. He referred me to a Gastroenterologist. He also told me that he felt something on my thyroid which led to an expensive ultrasound that came up completely normal.

I saw the Gastroenterologist on Friday. He listened to me ramble on for a while. He did not have much to say until I told him that I promised my mother that I would tell him that I eat sushi about once each week (he replied with, “who doesn't”) and she is convinced that I have a parasite. He said that it could be true and let me ramble on for a while longer. When I told him about the metal taste in my mouth he said that it sounded like a parasite. He said that it might be Giardia and that he wanted to send in a stool sample to rule out a parasite before he resorted to a colonoscopy. So, that same day I dropped off the stool sample (3 separate tubes from the same sample). I waited 10 days until I finally got the results which were negative and delivered via telephone by the receptionist who refused to let me speak directly with the dr.

Antibiotic

After waiting for three days beyond the day the dr. told me to call back for the results, I decided to begin taking the antibiotic he had prescribed. He told me that I could take it as soon as I dropped the sample off and it would't hurt me if I didn't have a parasite. I waited anyway to try to avoid spending money that I may not have to spend. After hearing for a week that they didn't have my results, I decided to get the prescription, Metronidazol (Flagyl). I began taking it last Friday, May 6. Since I began taking the antibiotic, I have had some light-headedness, a few minor headaches, and a persistent and unpleasant taste in my mouth. I also am having “hot flashes” that last for a few minutes and leave me flushed. I had one bout with nausea, but I haven’t really been plagued by it.

I have dealt with some constipation which is unpleasant but not painful, and some gas.

I have, since first taking the Flagyl, had a bowel movement either once or twice daily. Although soft, none of these have been watery or could even be classified as diarrhea.

Frustration

The Gastroenterologist has told me (through his secretary) that I need to come back and have a colonoscopy. He has come to this conclusion without following up. He has not spoken to me directly, he does not know that I have been taking the Flagyl, and he does not know that I haven’t had any diarrhea in the past four days (a record).

In an attempt to cure my feelings of hopelessness brought on by a lengthy wait for test results, I began doing my own research. I looked up Giardia on several websites and have consistently read that this particular parasite is difficult to diagnose. I read that the symptoms are difficult to diagnose and that the cysts left in stool by this parasite are very small and sometimes not numerous enough to be found in a sample. I read that often several samples must be tested before any evidence is found.

Conclusion

I’m unsure if I have convinced myself that my symptoms are a result of a parasite because I am not particularly excited about spending the end of next week prepping for and experiencing a colonoscopy or because it is a good possibility. I feel like I am not getting a fair amount of attention from the Gastroenterologist.

Basically, my mother and I would like an attentive and objective opinion.

Thanks for your time.

"It’s weird when you wake up one morning and realize your entire adult life is based on a decision made by a teenager..." -Passing Strange

When I was sixteen I decided I would move to New York from my teeny tiny hometown after I finished college. I was here for a long weekend sleeping in a basement, helping in soup kitchens, cleaning churches... I also saw Rent, ate Sri Lankan food (where is Sri Lanka again?) and met some of the most incredible people. I went home and wrote in my journal that I would move to New York when I finished school and signed the statement to make it official. Silly girl.

Six years later I had grown up considerably from that silly sixteen-year-old but I still had my sights set on New York. It was almost too easy. A childhood friend started dating a Brooklyn boy she had met in college and decided she would move to New York with me. I waited a million tables that summer and saved up $3,000. I packed my things and moved to Brooklyn promptly spending half of my savings on one of three bedrooms in a cheap apartment in a really lame neighborhood in Brooklyn . That turned out to be the easy part.

I began looking for a job as soon as I arrived. I thought I would wait tables to pay the rent until I found a "real" job. It turns out one needs "New York experience" in order to work in any decent restaurant in the city. I did eventually find a job but not before the money ran out. The job turned out to be the most trying experience of my life (at that point). Soon after, my friend moved back home without warning. Then my car died. I eventually got a new car (which came with a monthly payment) so I could drive to my horrible job on Long Island (I know, could it be any worse?).

I hadn't really had some fantastic New York life dreamed up before I moved here -I had never seen Sex and the City- but this was not what I had hoped for. I was alone, broke and freaked out.

Then I got sick.