Slice and Dice

Finally have a date for surgery.. It looks like I will be cut open April 16th (11 days). I do have to go for more pre-op testing, including bloodwork, X-rays and an ultrasound, so the date may change. One of the biggest issues thus far is that my GI, whom I love, is located about an hour and forty five minutes away (close to my parents house). My sister(who has GI issues) also seems the same doc which is one of the reasons I have yet to change. Also, my doc has a major Crohn's and Colitis research center attached to his practice, which is the most important reason why I have not left his practice yet. With Crohn's, it is so incredibly important to have a physician whom is interested in research, and that stays up to date. Considering I have only had the disease for about two years, and am on the last medicinal treatment option available, I need someone who is involved with clinical trials and new procedures.

This is going to be my first major surgery, associated with Crohn's. There is a lovely "fact" or statement from the CCFA that states that up to 75% of those with Crohn's will require surgery. Though this exact surgery is not on my bowels/intestines, I would not be needing this surgery if I didn't have Crohn's.

I will be saying goodbye to my gallbladder and some of my liver.. Typically this is all done laparoscopically but my surgeon feels that she will most likely do it through an open surgery due to an increased risk of bowel perforation.

So in a lovely turn of events in the past two weeks, I am now prepping for an upcoming surgery. My gallbladder, thanks to chronic inflammation, is no longer functioning and must come out. I ended up in the emergency room 2 weeks ago, with a slightly abnormal ultrasound. I was then discharged and released and told to follow up with a HIDA scan to see how well my gallbladder was functioning. Lucky for me, I had no stones, but after the HIDA scan found out that my ejection fraction was under 10%. My doctor prefers surgery for anyone with a scan under 38% so... Yeah I definitely make the cut for that one.


I'm meeting with a surgeon tomorrow. One of the things my GI doc is concerned about is taking multiple liver biopsies as well as doing a biopsy of the tumor on my liver while in there. He also gave me a fair warning that I may be forced to do an open surgery rather then laparoscopically due to severity of my Crohn's and the close proximity of the diseased intestine to the gallbladder, which increases the risk of complications.

Fingers crossed tomorrow will go well, and it can get in quickly for surgery. I'm at my wits end and can't deal with the lack of sleep much longer.

march

March is always a special month to me. March is Brain Injury Awareness Month. This past December, I celebrated the ten year anniversary of my TBI. Why would I celebrate that type of event?! To me, it is like celebrating a birth date. Most people are only lucky enough to have one birthday, a brand new beginning. In my case, I had a second beginning at life. I know I'm taking an extremely terrible event and just molding it into something semi-positive, but that is how I have been able to cope with it.

I've gotten to the point, where the only times I mention my TBI, is if I'm having an off day, or have medical visits related to it. I feel that without experiencing a brain injury, I would not be able to cope so well with my Crohn's. I have been living with an un-curable, "silent" illness for so long before my Crohn's diagnosis that once it was added into the mix, nothing substantially changed. Maybe that is why I have so much acceptance to my diagnosis. I have learned that asking "Why me?" is not going to change the illness, or the diagnosis.

It is also difficult to be active in both causes. Working in public health, I have a passion for advocacy. Crohn's is supported by the wonderful Crohn's and Colitis Foundation of America. Traumatic Brain Injuries are supported by both the Brain Injury Alliance of NJ (where I reside) and the Brain Injury Association of America. I feel pulled to be apart of both, yet time-wise it has been difficult. I am going to try the best I can to advocate, to raise awareness, to fundraise, and to speak of both. I can't, and won't choose between the two illnesses, since they both play equally important roles in my life.

Round Two

Took the second part of my loading dose of Humira, this past weekend, a couple of days early. I was at my mom's for an overnight visit, and wanted to inject with someone at home, in case I screwed up. I know this means I also majorly screwed up my schedule, but also wanted to change my injection day. The first injection was done on a Wednesday. The next two days at work (Thurs. and Fri.) I felt like death, and so run down. This time, I injected on Saturday, and felt like death Sunday and Monday. I'm hoping to adjust to Fridays, so I have the weekend to recoup. It's a tough decision... Do I really want to waste my weekend feeling like crap, or do I want to barely be able to function two days at work?

So far in two and a half weeks, I've lost ten pounds. Humira has yet to catch up with this flare. As my lovely GI once stated, I rather you live consistently a little chubby, so that during flares, you don't get deathly ill. I've been thankfully? Holding onto an extra 20 pounds from prednisone/Entocort, so I have something to lose.

The irony of the disease is never lost on me. The disease eats away at your core, your body literally fighting to survive. Then the steroids, which help your body, go above and beyond their duty and produce side effects that are worse then disease. Damned if you do, damned if you don't.

Coworkers, friends and family constantly complimenting on how great you look, how much weight you lost, yet you barely have enough energy to stand up. "Wouldn't it be nice to lose weight that fast" or "I wish I had Crohn's to lose weight". WTF.

I will fight this. I will try harder, not to let this disease consume me, neither my body nor brain.

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.