day 6

Day six, after first loading dose of Humira. In the past week, I've lost five pounds, and am in one of the two worst flares of this illness so far. I'm hoping that I can survive until day 15, and get two more injections in me, before this has a chance to destroy my body any further.

Besides the typical GI symptoms of a flare up, my arthritis also typically becomes much more severe.  This time around my hands and hips are most affected. Previously, my hips, ankles and knees were my hot spots. My hands and fingers bothered me last time, but not to this extent. I'm thinking it's just due to the fact that I sit at a computer 7 hours a day, with desk work.

I also am staying vigilant about my weight. Previous to my diagnosis, from 17 through college, I maintained 140 lbs, without any awareness. I could eat, drink, exercise and maintain without any thought. During my first severe flare, I dropped to 117 in under two months. Being close to 5'8, I was so sickly. I was out on Pentasa, then Asacol HD, then Lialda with no help. I then added in Entocort, with a course of Prednisone, and my weight skyrocketed to 187. I started to experience drastic side effects, and tapered my way off. At the time, I was also extremely frustrated with my physician for he didn't agree with my decision to stop steroids. Within three months, I dropped 16 pounds. It's been over a year, and I maintained at 167-168, medication free. I was in the school of thought that hey, I could work out more and watch what I ate to try to lose, but maybe hold off on it. I was honestly afraid of choosing to lose weight. Knowing what my body was capable on on its own, I didn't mind hanging on to those extra 25 lbs as a buffer space.

Here I am, closing in on 162. I'm not paranoid at this point, but will be monitoring it. It's abnormal for me to drop five pounds so quick. I'm hoping that soon enough, Humira will catch up to my disease. Would I love to be 140 again? Absolutely but not in this fashion. My body can't take it, and is struggling to survive as it is.

Humira, Day 2

So besides a minor snafu with FedEx, overall my Humira loading dose experience went very well. Humira comes as an auto-injectable pen, and less commonly in the US, syringes. For Crohn's and Ulcerative Colitis, the first loading dose of Humira on day one, are four doses (4 pens), followed by another 2 pens on day 15. These six first doses come in a cute little starter kit, along with a practice pen that talks. For other conditions such as RA, the loading dose is slightly different, requiring less of a start up dose. My doctor required an appointment with his NP to educate me on how to inject. Some physicians do traveling nurses, some do nothing.

Another thing that is important to remember is that it must be refrigerated. This is the major issue of shipping/receiving the drug. Did I mention it's ridiculous cost (my 6 dose starter pack cost my insurance $7,866.19)? Yes, seven thousand, eight hundred sixty six dollars and nineteen cents. So typically your prescription drug insurance coordinates with a speciality pharmacy to acquire and distribute the drug once the insurance approves it (which due to cost can be a major process). I am blessed to have fantastic insurance, where from submittal of pre-approval forms from my doctors office to having product in hand was less then a week. The speciality pharmacy gets the go ahead, and schedules with you how to ship/send the product. It must be overnighted due to being refrigerated. Also, I had to coordinate with my doctors office to have an appointment with the NP on the same day to administer.

After the second loading dose, I will take one dose every other week. I will then follow up with my doc in six weeks, to either continue with every other week or to go to weekly injections. My inflammation is severe enough that my doctor wants to do weekly injections, but due to my severe liver issues we are unsure if my liver can handle it at this time. We also have to keep an eye on the tumor on my liver as well, since Humira tends to enlarge tumors.

I'm sore, swollen, and feel like I was hit by a bus. Being in the middle of a flare sure does not help, but I haven't felt this sick in over two years. Hopefully in a couple days I will be feeling better.

I'm willing to do anything at this point to control this illness. I had a mini break down yesterday driving to my doctors. I'm 25. I have survived a moderate traumatic brain injury. I now, completely unrelated have a disease that is eating away at my intestines, causing severe inflammation everywhere. My joints are so arthritic. I now also have chronic liver disease, and a failing liver. I see my friends, peers, sorority sisters, classmates getting married, having kids, buying houses. On the other hand, my life consists of doctors appointments, sleeping, struggling to make it through work and trying just to survive. The past ten years of my life since my TBI, I have felt like a lab rat, running and running in circles but never getting anywhere.

Humira

I'm anxiously awaiting my loading dose of Humira tomorrow, pending all goes well with the FedEx fairy. I'm so blessed and thankful for excellent insurance. Within a couple hours of paperwork being submitted, I was approved. Now it's just coordinating the delivery and the appointment with a nurse practitioner...

What's in a name

I've been contemplating changing the name of my blog for the past few weeks. Part of me believes it is a bit too "ironic", and a lot too cliche. For now it's staying. It fits so perfectly. With both Crohn's disease, and with Traumatic Brain injuries, uncertainty are the only constants. There is a popular phrase amongst docs that no two brain injuries are a like. Just like with Crohn's, there is no perfect etiology, no predictably. In both illnesses, doctors have only breached the surface of understanding how the body heals, reacts, injures. I've spent a great deal of time being frustrated. Frustrated because there is not a natural course of progression. Frustrated because there are very few answers. I worry about what the future holds... will I eventually progress to having fistulas/abscesses? Will I eventually suffer from early dementia? How will my body handle pregnancy and child birth, for it is under enough stress just surviving day to day.

It is very true that everyone's lives are unpredictable, uncertain to an extent. Being majorly type-A, I find myself clawing to predictability, to planning ahead. Many diseases and illnesses are understood, researched and much more predictable. With having the combination of two very serious health issues, I feel that no matter how hard I try to plan,  my body revolts. Everyday life brings a new challenge, a new WTF moment. Sure this is consistent amongst healthy and not so healthy individuals, but the magnitude is so different. While "healthy" friends and co-workers may come down with a cold or the flu, I end up having a cold, and finding out incidentally that my liver is now functioning. Last fall, I had a sports related injury, and while getting a physical therapy evaluation, I find out that on top of the injury, I am starting to have neuromuscular contracture issues, and nerve death in my legs due to my brain injury.

I have tried stopping my search for certainty and predictability. I barely have enough time to try and control those times, and the fallout of my body being so complicated. Instead I have been trying to focus on the baby steps of life, and what I can control.

chronic pain

Let's face the facts. This girl (me) has lived through a traumatic brain injury. I've experienced broken bones (wrist, big toe, tibia, fingers), sprains, tendon/ligament issues, heck even a post TBI concussion. I'm no stranger in pain. I've been living with chronic migraines, nerve/contracture issues in my legs due to my TBI. In many ways, in a perfect metaphor, I've become numb to aches and pains of the physical sort...or so I thought.

Crohn's has made me re-think pain altogether. Two years ago, when the diagnosis first came about I realized how pain could suck the life out of you. In this most recent flare, I find myself sitting at my desk, or at meetings trying to hold on. The pain is so consuming. Not only is my pain located in the area of my guts where my Crohn's is (lower right quadrant), but due to lovely extra-intestinal manifestations of the disease, I also have severe pain in my joints. My inflammation travels quite quickly to my joints as soon as I flare. It attacked those joints where I have had issues with, like my legs, hips, ankles, and also joints that I at least don't remember hurting!

Early today I was eating sushi with chopsticks. I am usually so proud of my chopstick ability, but today, I could barely hold the sticks. I finally gave up. The swelling in my hands and fingers has become so severe the past few weeks, that I can barely hold a pen at work.

I'm hoping by the end of next week, I have my Humira in hand. From what research I have done, Humira also helps a lot with extra-intestinal inflammation especially in joints. I can only hope. I have never struggled so much at work, just to survive. I started a semi new position at my workplace earlier this month, right around the beginning of this flare. I feel awful for taking time off, and have been pushing myself even more because of the new position. It is taking the life out of me literally.

It's baccccck

9 months. Nine glorious, virtually symptom free months. Until December. Maybe it was the holidays, or the stress of a new job. Maybe my body was like hey we are celebrating ten years post TBI, let's party. I'll never know for sure. What I do know for sure though, is that I have Crohn's, and it is back with a vengeance.

The past three years, I've had five colonoscopies. Six upper endoscopies. One small bowel series, one MR enterography, one gastric emptying test, 2 CT enterographies, and a pillcam endoscopy. Add in roughly 50 tubes of blood taken, 2 random abdomen x-rays, x-rays of each major joint, ultrasound of my hands, and I'm safe to say that in roughly 30 years, I'm going to glow in the dark.

My liver is shot to hell at this point. I have severe diffuse fatty liver, and my LFTs make me cringe. Went for additional blood work, to try to see if it's just either nonalcoholic simple fatty liver disease  or nonalcoholic steatohepatitis (more severe, scaring of liver). I'm only 25. I still have a long life ahead of me, and ain't nobody got time for permanent damage. My doc says it's hard to tell if it's from taking steroids, or from my uncontrolled inflammation, or the combination.

I will, pending insurance, be starting Humira asap.Though liver toxic, it's not quite as severe as the immunosuppressants(methotrexate, 6mp, aza). I'll be doing quite frequent LFTs to ensure that Mr. Liver is maintaining.

I'm a survivor, and have been since birth. I am a firm believer that The Lord gives us only what we can handle. The big guy upstairs must have been impressed how far I've come along since my TBI, haha. I have no other choice then to look at this in a positive light. In some ways it is much more difficult to sit and mope wonder why me...what did I deserve it get this...haven't I had to deal with enough...and so on. Nah, I'm going to use my energy instead to say oh heyyyy I've overcome much worse, I can use this to better myself, and to better the lives around me.

Welcome back

I'm a major slacker. Oh well, whatever. Started a job December 17, 2012.  A day that will rest in infamy, or hopefully not. Going from un- employed to under-employed to rightfully holy crap I got a job in my field of study/ what I actually want to do, was a difficult transition.

It was and still is difficult to work a 9-5 day for me. I am so incredibly thankful to have a job with normal hours, but the health issues hamper my happiness from time to time. I was finally able to complete my 24 hour sleep study in the fall, which not only showed "extremely disturbed sleep", but also excessive day time sleepiness. Basically during my TBI, I broke my internal alarm clock/ go the f to sleep mechanism. My brain literally has to force itself into REM sleep/normal sleep cycles, and barely manages. That in itself deserves a post.

I have a lot more free time now that I am done school and can't wait to update more!

More waiting. My GI appointment to follow up with the biopsies from my endo/colonoscopy was pushed back to December 10th. Nothing like waiting over a month. My sister has began to experience severe diarrhea. She has had minor issues for the past couple of years, but in the past month or so, it has impacted her quality of life, and she has started to feel like crap. She is going to a different GI then me, but he ordered a full blood work up and a colonoscopy. I'm anxious to hear what her blood work says, and I'm hoping they tested for things like C-reactive protein, sed rate, and IgA levels.  Eventually we should both be seen by the same doc, since our symptoms are very alike. There has to be some kind of genetic component at this rate. Our paternal grandmother has had ulcerative colitis from the age of 17 on, and our maternal grandfather has had everything from ulcers to severe GERD. I'm also interested in the autoimmune aspect. My brother and I have had extremely bad allergies, Ezcema, and asthma since early childhood. Seeing as I have nonexistent IgA levels, I really do think there is an underlying immunodeficiency. It bothers me that none of my doctors have followed up with this possibility. Since we cannot get a definite crohns diagnosis, I feel that we have to look beyond the GI system to get an answer.

I scheduled an appointment with an immunologist for the beginning of the year. Besides allergy testing, I am going to ask for IgG, IgM and IgE blood tests. I know that IgA deficiency is fairly common, but given my situation and the severity of my case, I just want to be sure. I am my own medical advocate. I feel like House, MD trying to solve my own case. I have been the one putting my own puzzle pieces together for the past two years, why stop now.

In other news, I finally received the results of my sleep study. I got to see a pulmononigst, who specializes in sleep medicine. I have mild sleep apnea, which was somewhat surprising. I also have extremely disturbed sleep. My body only went into REM sleep once during the night, while an average adult goes through 4-5 cycles. The quality of my sleep is extremely poor. My doctor does not know if it is from my psychological issues stemming from my TBI or if the TBI itself damaged the mechanical aspect of my brain, not allowing me to sleep right. Disturbed sleep is extremely common in those with TBIs. Since I'm already on sleeping medication, my doctor prescribed me a medication to try to help me stay awake during the day, and to battle day time sleepiness. Since I have tried almost every sleep medication to no avail, the doctor thinks that I have a mechanical issues, and that no matter what I try, my brain will never sleep correctly. I have a few follow up appointments and will be starting this new medication soon. I sleep between 10-13 hours a day and nap every single day which is so abnormal for someone my age. He was shocked that no doctor has ever recommended a sleep study before. Once again, my own advocation is finally paying off.

So much on my mind right now.

So after my fourth colonoscopy and fifth upper endoscopy, I am left with even more questions then answers. We are still waiting on the biopsy results, but from the initial view, the scopes looked to be clear, meaning no evident Crohn's disease. This so unbelievably frustrating. My white blood cell count and inflammatory markers are still way out of control, so there has to be inflammation somewhere in my body. My doctor now thinks I could have a rare immunodeficiency but we will have to do more testing. My next step is for my doctor to contact the Mayo clinic or the NIH for their rare/unknown/diagnosed diseases departments. My body is fighting something, and something terrible. I have severe joint pain and arthritis throughout my entire body, yet I've tested negative for sjogerns, lupus, rheumatoid arthritis. I tested positives for the Ana antibodies, though, which is a marker for autoimmune disease. My ast and alt levels are way above normal, and my liver is still grossly enlarged, and has become completely fatty. All of my bloodwork points to an autoimmune disease, it just doesn't fit into one category. I am so freaking frustrated. I can't live my life like this. I have ended up in the ER for pain and severe dehydration five times this year alone. I've had six different antibiotics to fight infection, yet since they don't know where the infection is in my body, it's a total crap shoot. I am so frustrated and its been severely wearing on my mental health, which is already fragile.

I had to change the name of my blog, for my life is truly uncertain at this time. Whether I do have crohns or not,where do I go from here, or when I will ever truly get out of this terrible holding pattern I call life. I see Dr. C Monday, going over the biopsies and additional testing he ordered. For now, I don't want to leave bed. I don't want to anything, I just don't know anymore.

New Name.

This blog isn't just about my illness, it is about my life. With that, I have changed the name to better represent my thoughts and ideas. Full update coming soon!