Day 44

I'm sitting on a train, heading home to see my parents. More specifically, we are going to the hospital tomorrow for my father's one month, post stroke visit.

I've lived through enough to know that this was another turning point, when Dad had his stroke. We will tell stories now about before Dad had his stroke. We will talk one day about Dad never being the same after his stroke. We've already worried over what we should have done differently when Dad had his stroke. For several weeks prior to his fall, we noticed that he wasn't the same. Something about his facial expression. He seemed slower, less alert. Something just wasn't right. We should have done something then. But we did! Mom made him go to the doctor who said his thyroid was low. He wasn't home when they called so they told me about his thyroid. I knew it was nonsense. I cursed the lazy, overbooked family doctor I saw as a teenager and young adult. But I didn't do anything.

Then he fell. He told us some story about taking his meds without having had breakfast. We gave him some crackers and water and didn't call the ambulance. He told us not to. We knew he was going to fall as soon as we left him by himself, but we still didn't call the ambulance. We waited until he fell again. We learned not to question ourselves, our instincts.

This brings me back to healthcare and how far we still have to go in this country. Living in New York where the best of the best are available if you have enough money (this absolutely includes healthcare), I've forgotten how mediocre the healthcare is in my hometown and probably in most other rural communities. I've had enough hour-long visits with my New York doctor, his door closed, phone muted, to forget what it was like. I've forgotten how frustrating it is when the one person who may be able to help you leaves the room every two minutes of your fifteen minute visit. I've forgotten how scatterbrained the doctor can be when he has three other patients waiting in other rooms. I've forgotten how devastating it is when the doctor is in such a rush that he mixes up your paternal grandmother's diabetes with depression because it's the next disease on the list, then prescribes antidepressants instead of doing his best to find out that you have Crohn's Disease.

There is no reason why a DOCTOR should see a 64 year-old man with high blood pressure who is having trouble walking and is confused and NOT suspect a stroke. Looking back now, it is so obvious. Thyroid medication? A higher does of blood pressure medication? Did he really not suspect a stroke? Did he not think for a second that he should do the simple motor skills tests the doctor used at the hospital to help diagnose my dad's stroke? The simple, free tests that would have cost him only an extra five minutes? Where was his mind? On the insurance checks that would come rolling in after he cycled through the waiting room full of people?

So here I am on the train. I have to fight for my dad because he won't fight for himself. I'm not ready to let him die because the doctor is too busy.

Advice?

Here we go again.

With all the travel and stress and burning the candle at both ends, it appears the Crohn's is coming back.

I've been having joint aches for about at least a month now. Then I went to the dentist who found gum inflammation out of the blue. Now my stomach is in on it. It's not bad yet but it's getting worse. The headaches are back, it's increasingly difficult to stumble out of bed in the morning and the fatigue is getting to me. I probably shouldn't complain too much,I've had a pretty good remission going for almost two years, but I probably will. I guess it's time to slow down.

I know I should call the doctor but I have a big decision to make. I really like my doctor. He is a good listener, he never rushes me out of his office or off the phone and he seems to care about my well being. That said, he's a little laid back for my personality, he's not a Crohn's specialist and I'm not sure how much experience he has with extra-intestinal symptoms.

Do I stick with my doctor? Do I find a Crohn's specialist? Do I try an integrative program which combines modern medicine with complementary alternative medicine? Does anyone have any experiences they would like to share regarding a doctor change or alternative medicine? We've got some big stuff coming up and I'm not prepared to have another two year bout with the Crohn's. Help!

I feel great! (Well, except for a couple of things.)

Today I had my first blood test in three months. It was just a regular old checkin-up-on-the-Humira test. My nurse told me I have a completely new face which, I think, was a compliment. The 6mp bloat is gone and I have some color. I know I look better. I feel better. My life is better. I just still don't feel great.

My stomach is almost 100% better. I rarely have any trouble digesting anything I eat - even the stuff I shouldn't be eating. I do, however, still have Crohn's belly after every meal. If I swallow anything, no matter how big or small, it results in a food baby. I still have some trouble if I'm in an uncomfortable situation or if I'm nervous - BUT - compared to last year at this time, I'm a new person. So, when I call for my results on Monday, do I complain about this stuff? Should I just shut up? I can eat now! I can leave my house after I eat! I can make it to work without getting off the train and running to find the nearest facilities! Do I have the right to complain about some minor (if embarrassing) discomfort?

Then there's the pain. I do still have some minor pain when I, uh, youknow. But I have other, more disruptive pain. There's a pain at the base of my neck, on my back, where my neck meets my shoulder. It's recurring. It's horrible. It's much worse when I'm stressed out.

And my legs. They still hurt. It's more of a stiffness in the morning. They feel strained when I go up and down stairs. By the end of the day it's a different kind of pain. It's an achy, crampy, swollen type of pain that makes me just want to sit with my feet up or lie down. I've also notice many, many visible blood vessels on my legs which weren't there just a few months ago.

Then there are the headaches. I still have them. Often. And they're sometimes drug-resistant and always incredibly disruptive. And they make me so tired. Do I tell my doctor?

I've told him a million times about the headaches but he seems to think it's from the Humira so it's either headaches or Crohn's.

The body aches? He will send me straight back to the Rheumatologist who will tell me it's either Arthritis or Fibromyalgia and I can go to physical therapy. But I don't want to go to physical therapy. I can't afford physical therapy nor do I have the spare time. I want to know what's wrong with me! I want to know what my options are!

How do I voice this to my doctor in a way that doesn't make me feel like a half-crazy, whiney baby?

Suggestions? Advice?

Broken Record

Same old story: I'm battling it out with my insurance company again.

It turns out I haven't been getting any money from them because there's a glitch in the system. After I submit my claims for prescription reimbursement they get halfway through the process and the name of the prescription is removed from the claim so they reject it. I had to resubmit every claim since FEBRUARY.

I then found out that the reimbursement check for a trip to see a doctor in March was sent to the doctor. I paid in full, $570 dollars, before I left the office and the insurance company sent more money to the doctor. At this point they owe me about $4000 dollars. Do you know how many paychecks that is?

I am beyond frustrated. I do not know the words to express how I feel about this situation and the fact that I am going to have to deal with this for the foreseeable future. I could scream.

Blah

I spoke with my doctor last week. My blood test was fine except for slightly elevated liver levels (sorry, I have nothing more specific). He thinks it's probably from the Tylenol I've been taking for headache but my numbers were not high enough to stop the Tylenol.

The doctor agrees that my joints shouldn't be more painful now that I'm (supposedly) in remission. He is sending me to a Rheumatologist who I will see next week. This particular doctor comes highly recommended by my Gastro, online reviews and someone I know who has seen him. As always, I am incredibly grateful to live in New York and have access to some of the best doctors in the world. I have an appointment next week.

Otherwise, I'm still having headaches several times a week although I haven't had a migraine in quite some time (knock knock). My guts are generally quiet during the week as long as I don't eat lunch - which I learned the hard way last week. The weekends are still a bit more tumultuous because I like food, OK?

And so we wait...

Weekend Madness

My weekend pattern continues. I did just fine this week but Saturday and Sunday were a different story. I did have an egg for breakfast each morning this weekend but I don't think I do that every weekend. Or do I? Hmmm... Anyway, as I sit here typing my stomach is churning away. I'm sure I will have to take a break in a minute. Those heavy butterflies are making their way through my abdomen.

I'm thinking it's time to see an allergist in case I'm eating something that's making me sick. I've said it a million times but I need to do it. I will put it on my to do list for Tuesday. I'm sure it will take a few days since I will have to deal with the insurance company first. The insurance company always adds about seven layers of annoyance to any search for medical care. I feel my blood pressure rising just thinking about the initial phone call. Yuck.

This weekend I am also having a lot of arthritis pain. I spent more time on my feet yesterday than I normally do. This morning I walked to the laundromat with a heavy bag on my back and I did a lot of walking this evening. It's pretty cold out there which probably doesn't help. So there are the reasons my joints are bothering me but I have no explanation. Why doesn't the Humira work for both? I have to call my Gastro for blood test results on Tuesday so I guess I will seek his advice then.

On a good note, I am feeling more confident lately and am trying to get out more now that I am feeling better. I've been busier this past week than I have in a while and it feels really good. I am hopeful.

Headaches

Last night I had my fifth Humira injection. They've been going pretty well so far. I find it fairly easy to inject in my leg and I only had a problem once - I think I moved after the needle went in. It hurt. A lot.

The Humira is definitely helping some. I'm on week eight so I'm assuming the medicine is at full power by now. I only have diarrhea four or five times a week now (as opposed to four or five times a day) and, although I still am having pain, it's not as often. My stomach still swells to six-months-pregnant after I eat and I'm still not feeling confident enough to eat while I'm at work, but I'm getting there.

The only thing I've noticed is that I seem to get a headache a day or two after my injection. The headache lasts a few days but it's manageable. My doctor doesn't seem to think it's a problem so I guess I'll wait it out for a while.

This weekend, however, I had an awful migraine. It was the day before my injection so I don't think it was Humira related. I felt really nauseous the night before but went to bed without thinking much of it - I'm always nauseous. The next morning I woke up to ringing ears and a slight headache. I decided the best thing to do was to go back to sleep. The next time I woke up the light was bothering me and my ears were still ringing but the headache wasn't any worse. A few hours later though I had to get back in bed. I was shaky and nauseous and my head was really killing me. Soon I was in so much pain I couldn't bear it. I have literally not been in that much pain in my life. I had the blind spots and everything. By the time it was over I was completely wiped out and felt exhausted the entire next day.

I've had lots of really bad headaches since I've been sick but nothing to this degree. I have been traveling and entertaining guests and not eating right lately. I've also been a little more stressed out than usual and I'm hoping that was the cause of the migraine. I'm going to try to relax and eat better (at least until Thanksgiving) and see how it goes.

I'm having some trouble finding information connecting headaches/migraines to Crohn's. Does anyone else have headache issues?

The Biologics Discussion

We went to Dr. C's office and he made me another list. He told me I could choose from Remicade, Humira or Cimzia and that he may prescribe Methotrexate along with whichever biologic I chose.

I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.

We all know these medications come with risks, especially the risk of infections. I learned that I would have TB, Hepatitis B, Hepatitis C, HIV, and HPV tests before I could be cleared for biologic treatment. My doctor also mentioned that there is a very slight risk of Lymphoma with these treatments (slight meaning about a dozen cases in hundreds of thousands of those being treated).

On the brighter side, the dr. told me that there are fewer side effects with biologics and I would take them much less frequently than the other medications I was taking at the time. Best of all, biologics usually work.

I left feeling hopeful but still really nervous.

Dr. Crohn's

Occasionally, things just work out perfectly in my life. A little over a year ago, the day after my stool samples went missing, I found a fantastic Gastroenterologist. We will call him Dr. Crohn's. I was referred by a patient of Dr. C's who knew a little bit about my struggle.

My first visit to Dr. C's office blew my mind. I had faxed my medical records to Dr. C before my appointment and he READ THEM BEFORE I GOT THERE! I told my story in his office and he listened to every word. He didn't interrupt me or snicker. He didn't give me the creeps or suggest that I have the same old tests done. He listened. He listened until I finished then asked me a few questions. Then Dr. C did something that really affected me. He sat at his desk and wrote out a list of a few things that may have been going on with me. He proceeded to go through the list and explain why each of the items on the list were likely or unlikely and then told me that he thought it was Crohn's and he would like to do a colonoscopy to investigate further.

I'm not sure why I was so affected by that list. It may have been because all of the doctor's I had seen were so secretive or because they were always in such a hurry but that list really got to me. I left the office feeling validated, hopeful and confident in my new doctor.

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.