This Is Hard

I'm trying to remain calm and relaxed and enjoy the winter weather.

Happy snow storm!

I Want You Back!

I realize I'm not being very positive but it's pretty difficult to muster up some confidence in the future. Besides, I think I'm doing pretty well putting on the brave face every day.

The truth is, I'm scared. It's been over a year and a half since I started this latest battle and I'm not any better off now than I was when I began. You see, Humira is officially not working for me. It is now week twelve and, aside from a small glimmer of hope about six weeks ago, my symptoms are getting worse. I had a really hard week at work and I've caught a cold.

I went three days without having a meal last week. I had small snacks and tried to drink enough, I even bought some Ensure (although I have yet to take one out of the fridge). Despite the starvation strategy, I only made it to work on time without making a pit stop once.

So my doctor is sending me to radiology on a fact-finding mission next week. Depending on the results, we will decide on the next step the following week (unless I can't get an appointment b/c of Christmas).

I can't think about anything else (my body won't let me). The constant pain and fear are incredibly distracting. I have to plan my entire day around my digestive system and obsess over every little thing I put into my body. Without all of the planning and obsessing I find myself feeling very, very sorry.

I WANT MY LIFE BACK!

Crohn's Guilt

I have Crohn's Guilt.

I am in the midst of a "flare" that began a year and half ago. I've been through lots of drugs and lots of symptoms and it's all been awful but the worst side effect, by far, is the guilt.

My apartment is filthy, I have a untouched pile of work on my desk in the office and a million projects at home that I want to finish. My friends, family and boyfriend all want to go places and do things and eat food. Me? I'm in bed battling (choose one) a migraine, stabbing/burning/crampy abdominal pain, nausea and/or heartburn from hell. If you can't find me in bed, I'll be in the bathroom.

I know there are a million things that need to be done but I can barely stand up much less take the train to the office. Is there anything I can do from home?

Nevermind, I'm feeling fine today. Let's go somewhere. No, I can't go to a restaurant. I'll never make it home alive. Ok ok, fine. Let's go to dinner. No, I'll just have a Coke. It's fine, don't worry about me. I'm not that hungry anyway. Really, don't feel bad, I'm used to it. I know you're not used to it but I will be fine. Just let me have one bite of yours.

Oh man, we need to get off at the next exit/subway stop/gas station. Hurry! NO, get off this exit! I need to stop NOW! I'm not going to make it.

I know we were supposed to go to that movie tonight but I really can't. I'm feeling awful. Can we just go home? I'm sorry.

I'm sorry, we can't go for breakfast before we do laundry/lunch before we go grocery shopping/dinner before the movie. I won't make it.

I'm so sorry I made you pull over/bailed on you/yelled at you/made us late for the play. I'm really sorry. Sorry. I'm sorry.

Since I can't read minds (yet). I never know if the people in my life are disappointed, angry or if they actually do understand. I still can't believe this is my life. This is so hard...

I Don't Like Spiders And Snakes...

So I have a few irrational fears. Who doesn't?

I have always been afraid of bugs for no reason (aside from this movie), I get nervous butterflies before I get on a roller coaster (a few summers working in an amusement park will make anyone wary) but the one fear I have that is completely unexplainable is needles. I've never had any sort of bad experience with needles. I was reasonably healthy for the first 24 years of my life and didn't have any more injections than the next person. Yet, for some unknown, ridiculous reason, I am terrified of needles.

Just thinking about a needle is enough to make me nauseous. My diabetic grandmother used to ask us to get her needle from the fridge for her. I would send my little sister. Time for a blood test? If I thought about it too far in advance I would be so nervous by the time I got to the doctor's office I wouldn't be able to sit still.

I never thought I would have to actually pick up a needle and inject myself. It gives me the willies. I try not to think about it until it's time. I try to make sure I'm nice and relaxed but I just can't help it. I had my sixth injection tonight and I'm just not sure I'll ever get used to it.

One More Day

Thanksgiving weekend went pretty well. I narrowly avoided disaster in the middle of a long drive on a highway with very few exits. I had a great time. I ate too much but it was worth it. Nothin' like home cooking.

After a long weekend with the family I realize how lucky I am. No family is perfect and mine is no exception, but I am incredibly blessed to have parents who would do anything for me and siblings who are also great friends.

As far as the Crohn's goes, I'm not doing very well. Tomorrow is Humira day. I think I will give it a few days and see what happens. We had a little slip up on the last injection and I didn't get the entire dose. I'm hoping that's what the problem is and the medicine kicks back in this week. I'm not very good at waiting games.

The Crappy Week Continues...

I'm still having major digestive problems but the headaches seem to have stopped. I am convinced, although my doctor finds it strange, that the headaches begin a day or two after my injection and continue for a few days. I could deal with headaches if they came with some sort of relief from the pain and other symptoms but that's just not the case.

I'm looking forward to going back home for Thanksgiving this week to spend some time with the family and relax a bit. Hopefully the drive goes smoothly and the visit goes smoothly. I know I will suffer after the turkey and trimmings but I will eat them anyway and try not to stress too much about anything.

I've decided that I will try one more injection on Monday. If things don't improve after that one it's time to call the doctor. Enough's enough.

Aaaaaaaarrrrggggghhhh!

I'm so irritated and frustrated and angry! I thought the Humira was working. I suppose I'm being punished for getting my hopes up.

I have had one of the worst weeks ever. It all started with the giantest migraine ever on Sunday and went downhill from there. I'm back to not being able to eat anything without having to run to the bathroom but, this week, the trips to the bathroom are accompanied by pain like I've never had before - horrible, crampy pain that sometimes turns into burning then stabbing pain. Just in case that wasn't enough for me to deal with, I'm blessed with daily headaches that seem to get really intense in the afternoon then either go away, or don't. Also, although I'm not taking any meds orally, I am having nausea like I haven't had since I was on 10 pills/day.

I don't know what's going on in there. My doctor wants to wait a few more weeks to make sure the Humira is working. I'm so over it.

Huge Pain In The A..

Today was incredibly discouraging. I wasn't feeling great when I got up but I left for work anyway. Halfway to the office I started having some pain which could mean disaster or could just be some pain. There's no telling. I was in between train stops when it got really intense. I've been sick every day for a long time now but the pain was always dull and achey (thank goodness) until recently. Today it was burning, stabbing pain that almost brought me to my knees on the train. I spent the next ten minutes trying to stay upright and devise a plan. When the train finally stopped, I got off to seek refuge (a bathroom).

Anyone who has had an attack in an inopportune location knows the minutes until you get to a bathroom are the longest minutes since the beginning of time. Here, in New York, there is an added element of anxiety because there are guards at ever door, locks on every bathroom and rules regarding who can access the key. I quickly found a clean (bonus!) bathroom and snuck into it. I spent eons inside as I still had a 15 minute ride to work from the bathroom and wanted to make sure I would make it alive. Eventually I made it back to the train and then to the office.

I tried not to let my crappy morning ruin the rest of the day but the pain and exhaustion had other plans and the day was pretty much a write-off. The headache came in the afternoon and has yet to leave.

I've noticed an increase in the intensity of my pain since I started Humira. I am wondering if this indicates a narrowing of the intestine somewhere in there but the liquid nature of my -you know- made it easy for it to pass through. Now that the nature of my -you know what- is no longer always liquid, it's causing horrible pain. Anyone?

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?

Humira

Well I did it. I injected myself at home with Humira. It went well, I think. I have a tiny little red dot at the spot where I stuck myself and that's about it.

I had the first two injections at the doctor's office last week and had no problem then either. I gave myself two injections with the supervision of my doctor and it was easy enough - a tiny little sting for ten seconds then you're finished. I am using the pens which are great. I like that I can't actually see the needle entering my skin. In fact, it's a bit difficult to see the needle at all. Fine with me.

There's a great instructional video on the Humira site. It's not as difficult or scary as I had myself believing.

The first week I got a headache a few days after the injections. The headache lasted about three days straight. I can't be sure that it was Humira related. I guess I will find out. It was a double dose the first time so maybe this time it will be better? Please?

There was a little bit of a problem at the doctor's office with one of the pens. But, once again, Humira came through and sent two replacements. So far, the experience with Humira/Abbott has been pretty good. Now, if only something could be done about my insurance company...

The End Is Nigh (I Hope!)

The past two months have been a challenge to my sanity. Working out a way to begin biologic treatments has become a part-time job. After wrestling with the insurance company for weeks then spending a few days on the phone with the Humira people, I have finally FINALLY picked up my starter kit.

I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.

Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.

I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.

My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:

Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?

Am I going to tolerate this stuff?

Should I really be injecting something into my body that has only been on the market for seven years?

What if biologics don't work for me?

I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.

The Long Road to Humira

My doctor left choosing the biologic up to me which meant it was up to my insurance company. Brilliant. I have a long and sordid history with my insurance company and knew from the start that this wasn't going to go well.

I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.

My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.

So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.

A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.

I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.

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.

Immunosuppressants

6-MP

The next step was to try to suppress my immune system and, hopefully, get the Crohn's under control. I started 6-MP aka Mercaptopurine aka Purinethol soon after the capsule endoscopy. About a month after I started I began to see improvements. If I ate three meals in one day I was in the bathroom four or five times instead of eight or nine. If I didn't eat three meals my bathroom trips were down to one or two. Best of all, there was one day every week or two when I wouldn't even make one trip to the bathroom.

I did not, however, see any improvements in my arthritis symptoms or fatigue. In fact, the fatigue became significantly worse. I didn't realize it at the time but I was in a fog for close to eight months. I don't know how I made it through. I woke up in the morning and was sometimes physically unable to find the strength to get out of my bed. My one-block walk to the subway left me drained and short of breath. I spent most of my day trying to gather up the energy to complete the simplest tasks at work. Getting to work and back home left me so exhausted that I couldn't do anything else. I spent at least one day each week sleeping. I was a zombie.

I was on 6-MP for eight months because it seemed to help in the beginning. At least I was seeing some results. We tried increasing my dose until I maxed out. Then we added Entocort and finally Pentasa. I guess neither I nor my doctor wanted to give up on it. Then I got sick.

I had a slightly sore throat Thursday evening. On Friday, I called my doctor. He told me to stop the 6-MP and call him on Monday if it didn't get any better. By Monday I couldn't talk. I took every cold medicine I could get my hands on and I still couldn't sleep. My throat was so raw that the mere act of inhaling made me cough. I started an antibiotic on Monday and felt better immediately.

The day after I finished the antibiotic the sore throat returned. Thankfully, I hadn't restarted my 6-MP. My doctor was on vacation and I was halfway across the country for a wedding. The day I returned to New York, I saw another doctor in the practice. He thought it would be a good idea to see an ear, nose and throat doctor just to make sure it was nothing to worry about. The specialist decided it was nothing to worry about. I finished a Z-Pak and all was well.

In fact, I was feeling so much better that I was thinking twice about restarting the 6-MP. Two weeks after I had gotten sick I breezed through a huge pile of work that had been accumulating on my desk for months. I could walk to the train without needing a nap. It was fantastic. Of course all of this new found energy came with a price - my Crohn's symptoms were as bad as ever. I put in a call to the doctor.

Crohn's It Was and Crohn's It Is and Crohn's It Ever Shall Be

A few days after the capsule endoscopy I got the results from my doctor. He gave me a report with some amazing color pictures attached. I will have to figure out a way to post a picture or two. This is what the report said:

Reason For Referral:
Abdominal pain, rule out Crohn's Disease

Procedure Data:
Small bowel passage time: 2 hours 49 minutes

Procedure Info & Findings:
The patient swallowed the capsule without difficulty
-Found moderate to severe jejunitis and ileitis with relative sparing of the duodenum.
-Jejunal and ileal mucosa appear erythematous, edematous with multiple erosions and ulcers. -The capsule was seen passing into the cecum.

Summary & Recommendations:
Findings consistent with Crohn's enteritis

So Crohn's it was and Crohn's it is and Crohn's it ever shall be.



* From thefreedictionary.com

erythema- Redness of the skin caused by dilatation and congestion of the capillaries, often a sign of inflammation or infection.

edema - An excessive accumulation of serous fluid in tissue spaces or a body cavity.

Capsule Endoscopy

After trying Pentasa and Entocort, my doctor thought it would be a good idea to have a capsule endoscopy.

The prep was much like a colonoscopy prep so I was up most of the night, you know, prepping. I went in to the office in the morning and they put a belt around my waist with a monitor attached to it. The nurse glued some sensors to my abdomen and turned the monitor on. She then activated the camera pill and made sure it was synced up to the monitor. I was a bit nervous about getting the pill down but I swallowed it with no problems.

I left the doctor's office and decided to go home instead of the office. I had been up all night and was exhausted. I was also nervous about getting on the subway - that monitor belt looked a little bit like a bomb, especially with the light that blinked in time with the flash on the camera pill. The nurse told me not to eat or drink anything for a while (I can't remember how long but it wasn't too bad). They also told me not to lie down as it inhibits the passage of the pill. As long as I didn't have any pain and the light kept blinking, I just had to come back to the office eight hours later to return the monitor.

The worst part of the whole experience was staying upright. I wanted to sleep so badly but I had to prop myself up on a stack of pillows and it just wasn't working out. I did experience some sharp pain high up on the left side of my abdomen several hours after I'd swallowed the pill but the pain wasn't enough to cause me much concern.

I returned the monitor eight hours after I had swallowed the camera pill and that was that. Aside from the prep, it was really easy. Like I said, the worst part was the damage it did to my nap time.

Steroids

Entocort

Entocort aka Budesonide is a steroid that is released in the intestine. The idea is to keep it out of the blood stream and limit side effects.

I didn't have any trouble with side effects on Entocort but it didn't help either. I tried it for a month with no results.

Plan C.

5-ASA

Pentasa

My Crohn's treatment began with Pentasa also known as 5-aminosalicylic acid or 5-ASA. Pentasa is an anti-inflammatory that acts only in the digestive track which means there should be fewer side effects.

I had some trouble with Pentasa. I started off with six pills per day and the nausea was awful. I cut back to three pills then added one pill a week until I got back up to six. The nausea got better but my symptoms did not improve after a couple of months.

Time for plan B.

Diagnosis

I returned to Dr. C's office a week later for a colonoscopy. The biopsies taken during the colonoscopy confirmed inflammation in the ileum consistent with Crohn's Disease.

I definitely experienced diagnosis euphoria. I was ecstatic. After years of uncertainty I finally, finally knew what was wrong with me. I have Crohn's Disease! There are treatments available! I'm going to get better! I'm going to get my life back!

Some doctors start off with steroids or biologics and, once the patient is in remission, they lessen the intensity of the treatment. My doctor follows a "bottom up" approach to treatment. He begins with the pills which are least likely to cause side effects and uses biologics as a last resort.

Before my diagnosis I had taken Flagyl, Welchol and Effexor. The new plan was to try several medications, one at a time. If they failed, we would begin combining those medications until we ran out of options. If I got that far and I wasn't doing better I would try biologics.

A diagnosis and a plan!

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.

Uncover Ostomy

This is fantastic.
http://uncoverostomy.com/

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.