How are you?

I feel like a monster. Mentally the past couple of weeks have taken a toll on me. I am so incredibly tired of people asking how I am, and how I am feeling. I am sick of having to lie, or even worse, my most common reply, “hanging in there”. I want to say I feel like f-ing crap. I want to say, I feel lonely, I feel agitated and frustrated. I want to say I feel pissed as shit today.

I’m tired of going into work with a smile on my face every day, pretending to hold on to some semblance of normality. I am also beyond tired of hearing- “You poor thing”, “You’re so young!”, “It’s so sad”. One of my absolute favorites is “Haven’t you’ve been through enough?”

I get that I should be thankful that people genuinely care and are concerned. I am just so frustrated. I am frustrated because, yes, I am young. Yes, I had a traumatic brain injury ten years ago, was diagnosed with Crohn’s Disease two years ago, and now diagnosed with Autoimmune Hepatitis. Yes, it is sad, because my health has been ripped away from me, my foundation crumbling, while I should be enjoying life. Instead I am worried about next week’s blood work. I am worried that I have run out of treatment options for my Crohn’s, and that my body is no longer responding to medication. I am worried that I may never be able to have children.  I am worried that within ten years, there is a strong likelihood I will need a liver transplant. I am worried because my joints are already damaged from chronic inflammation, and I am only 25. With all these worries, it is hard to just answer “I am okay.”

With the feeling of worry, also comes the feeling of being pissed. Why should I be worrying about things only those in their 70s worry about? Why should I have more worries about my body than my grandparents in their 80s do? I am pissed as shit that my hepatitis and scaring of my liver is worse than those people who have been alcoholics for fifty years, or those that have viral hepatitis from engaging in high risk activities. I ran half marathons, ate paleo, and totally organic. I indulged in the occasional bottle of wine, but never used an illicit drug. Being a public health fanatic, I have always had safe, protected sex. How fair is it that my liver is in worse shape than many people who have Hepatitis C or Hepatitis B or were raging alcoholics for decades? How is it fair that crack addicts and heroin junkies have less health issues than I do? I have worked my ass off to stay healthy, and to live a productive life, yet at this point, I can’t seem to help myself.

I haven’t figured out the right answer to “How are you?” I may never. For now though, I am going to be honest. If others cannot handle my response, or it makes them feel uncomfortable, so be it.

Hepatitis?!

According to my great friends at the Mayo Clinic, Autoimmune Hepatitis is

"inflammation in your liver that occurs when your body's immune system attacks your liver. Although the cause of autoimmune hepatitis isn't entirely clear, some diseases, toxins and drugs may trigger autoimmune hepatitis in susceptible people, especially women.

Untreated autoimmune hepatitis can lead to scarring of the liver (cirrhosis) and eventually to liver failure. When diagnosed and treated early, however, autoimmune hepatitis often can be controlled with drugs that suppress the immune system.

A liver transplant may be an option when autoimmune hepatitis doesn't respond to drug treatments or when liver disease is advanced."

What AIH is NOT...

- It is not viral

- It is not labeled A, B or C

-It is not communicable... I did not get this from someone, nor can I give it to anyone

-curable

AIH is most common in women, those with other autoimmune conditions, and younger people. Lucky for me, I get not just one autoimmune disease, but now two. AIH is more commonly seen in those with Ulcerative Colitis over those with Crohn's, but since I love being an anomaly, it fits. Speaking of fantastic news... I also received the results of the biopsies from my colonoscopy on May 8th. Previously, my Crohn's was strictly located in my terminal ileum. Like in my previous scopes, my doctor took 20 plus biopsies from my ileum through rectum. Unlike in other scopes, every single specimen was abnormal, including specimens from my colon. I now have ileocolonic disease, and it is spreading.

Fortunately similar drugs are used to treat both AIH and Crohn's. Treatment for AIH is limited to prednisone and Azathioprine. Crohn's has many more treatment options for inflammation (even if I have exhausted many of them). I have been off of Humira for almost two months, after stopping it before my gallbladder surgery. Right now, I am taking strictly prednisone and azathioprine waiting for my LFTs to normalize. I will be starting to taper the Prednisone, and may have to adjust the azathioprine to make up for it. I also will hopefully be able to start back on Humira once my LFTs stabilize. For the bare minimum, I will have to take azathioprine for two years, for the AIH. I am thrilled that both of my doctors hate prednisone, and already have a plan for tapering. I do not do well whatsoever on prednisone, mentally or physically and I am happy that we are on the same page for that. I also get to follow up with my doctors every 3-4 weeks, along with concurring blood work.

When it rains, it pours. Lucky for me, I put on my wellies and jump in...

always a puzzle

Tuesday morning (May 13th), I still had yet to hear from the hospital where I was going to get my liver biopsy done. I had called before I left for work, but the same day surgery floor was still adjusting schedules, and that I would receive a call back within an hour or so. I threw an overnight bag in my car, and headed into work. Fifteen minutes after arriving to work, I then received a phone call that I could be fit in for a biopsy, and asked how soon I could make it to the hospital. I also was struggling to coordinate times with my mom, seeing that I would need a ride home from the hospital after the procedure. Also adding to the complexity, is that the facility is mid-way between my house, and my parents house (roughly an hour drive for each of us).

The plan was for her to bring my grandmother with her to the hospital, so my car would not be left there overnight. Once I arrived, things progressed pretty quickly, and my doctor had also ordered even more blood work before the biopsy. I was brought down to interventional radiology, pumped full of proposal, and was sent to recovery. The entire procedure took less then five minutes, and was virtually painless.

I was sent back up to recovery, where I would remain laying down for four hours before being discharged. Unfortunately, it wasn't that simple. My blood work which was performed while I was getting the biopsy, was "alarming". My LFTs were close to 900, my bilirubin was increased, as well as many other markers for severe liver dysfunction. My doctor wanted to admit me overnight for observation, as well as to run more blood work.

Wednesday morning, I had over twenty tubes of blood drawn. My mother had left the night before, with my grandmother, but was back with me by 9am. At this point, we were waiting for my hepatologist to round. I had the pleasure of explaining my story/ prior medical history to an intern and resident, and within the hour my hepatologist came by. He had just come from looking at my biopsies with the pathologist. Preliminary results showed what he expected, Autoimmune Hepatitis, with moderate to severe fibrosis, and stage 3 liver disease.

It was decided to start a concurring treatment of Prednisone along with Azathioprine, which is the most common, and basically only option for treatment of AIH.

AIH

So, if my body didn't hate myself enough as it is, I've been diagnosed with another autoimmune disease. I have developed Autoimmune Hepatits, which is more rare then Crohn's, but is more common in those with pre-existing autoimmune diseases. I'm still trying to wrap my head around the activities of the past few days, including a lovely mini vacation (barf) in the hospital.

I'm exhausted and my body is rebelling, especially since I started two heavy duty medications to get this under control. Don't worry I'll give a full play by play once I'm feeling a bit better.

Thanks for all your love, support and concern during this time. I can never say enough thanks, and how much I appreciate it.

waiting game

so my first set of bloodwork from Friday has come back. I'm waiting for my copy of results to be made available online. I did receive a phone call from my hepatologist, wanting me to come in for a liver biopsy ASAP... As in tomorrow or Wednesday. If I can't get put on the outpatient schedule, I will be admitted for "observation", and sent for s a biopsy that way.

I'm itching to see what my LFTs were to push for this. I had two biopsies removed during my gallbladder surgery, and on Friday when I met with the hepatologist he was going to try acquire the slides/ any additional info. Apparently there isn't time to wait and try to see if the other hospital still has them.

I get all of my bloodwork done through LabCorp, which has a nifty tool called Patient Beacon. If available in your state, you can access all of your lab tests/results done through LabCorp, within 24-48 hours of your doctor reviewing the results. Since my doctor's phone call, I have been checking incessantly. I wish I had asked my doctor what the actual number results were, but at the time, I was thrown off. Working in communicable disease, I deal with laboratory testing/ tests every single day. I know that in this age of Dr.Google, that people can be obsessive with things they find online. Part of me just wants to be an informed patient, aware of what is happening to my body, and to be prepared when decisions have to be made.

A nurse from the hospital just called, and gave me a number to call tomorrow morning to see if I'm on the procedure list. Until then, I'm hoping to keep my anxiety at bay, and relax the best I can.

It's been a crazy week. Got blood work done last Saturday morning, and by Monday afternoon received a frantic call from my GI. He called and was extremely concerned about my LFTs. In just about a month, my AST/ALT levels jumped from the mid 200s to the 600s. We were expecting them to normalize after my gallbladder removal. I had initially scheduled a hepatologist appointment for early July (the first available), but my GI said he would call and get my appointment pushed up to next week.

Thursday, arrived at the same day surgery center. My GI recently switched facilities, and it was his first day doing scopes at his new hospital/surgi center. Things were a bit hectic. After waiting 30 minutes after check in, a nurse gave me a clean catch container for a urine specimen. I managed to collect a specimen, yet could not find a nurse to give my container too. My GI came out to talk and immediately noticed my urine container, and was quite alarmed with my sample. He called the hepatologist on his personal cell, and managed to get me an appointment the next day, Friday. The colonoscopy went well.

My new hepatologist is concerned. I immediately got blood drawn for repeat LFTs, and another test. I was to immediately start a 24 hr urine specimen collection, and to also get about 30 different blood tests today. He was also going to try to obtain my liver biopsies if the hospital still had them, as well as full pathology notes. Best case scenario, is that it is a viral infection such as Epstein-Barr manifesting in my liver. Worst case is autoimmune hepatitis or Wilson's disease. I have been tested a few times for each viral hepatitis, and have been vaccinated for A and B, so those are off the table.

Working in infectious disease epidemiology, I have a decent understanding of viral hepatitis. I am used to seeing multiple lab test values, and LFTs for those with chronic, untreated hepatitis and my LFTs are much worse. I'm just hoping that within a couple of days we get results of my blood work and figure what is causing my liver to fail.

Chopped Liver

I'm miserable tonight. Maybe it's due to the fact that it's the weekend of the Broad Street Run in Philly, which I was supposed to run. It's the second consecutive run that got cancelled when I found out I was getting surgery. Meeting with my surgeon on Wednesday, she was adamant about waiting at least another 2 weeks before attempting any type of "mileage". She reiterated the point by showing me pictures of herniated abdominal wall from people who rushed recovery.

After meeting with the surgeon Wednesday, I followed up with my GI today. We went over the results of my liver biopsies that they took during my gallbladder surgery. I am once again a medical anomaly, and have a form of liver disease typically seen in obese 50-65 year old women. I do not fit into any of the risk factors, and really are unsure of what has caused my liver to progress this far in disease, at my age. He referred me to a great hepatologist, who can hopefully pinpoint why my liver has become diseased, and how we can treat whatever is going on. I was originally diagnosed with Nonalcoholic Fatty Liver Disease. This progressed first to Nonalcoholic Steatohepatitis, and now I have fibrosis. The fourth and final stage is the cirrhosis. It is extremely rare to have someone who is physically fit, under the age of forty with no history of diabetes, hypertension, viral hepatitis or rapid weight loss to develop fibrosis. I unfortunately am a rare case. At this point it does not look evident that it was drug induced, but it may be an extra-intestinal manifestation of the Crohn's.

I also have to go for yet another colonoscopy next week, which is always such a joy. My blood work has been funky lately, even with starting the Humira, and with everything else going on, he wants to do more biopsies.

I'm just cranky. It's not often I ask the question of "Why me?". At this point, the frustration of disease interfering with normal activities has gotten to me. My wine, and more importantly, running have been taking from me.  I was surviving quite well when the pleasure of enjoying food was taken from me, but subtracting running and wine from my life together has made me a bit miserable. I don't even drink much, but it's the proverbial icing on the cake. Since my TBI, normal life functions, have been ripped from me. Memories, cognitive ability, coordination, walking, sleeping, have all been taken away. I have gotten parts of each function back, but having these innate human functions taken away has taken a toll on me. I know that wine, food, and running are all luxuries, but taking away my simplest of pleasures, my releases, my stress relievers, my coping strategies for dealing with the more substantial losses, I am, for lack of a better word, cranky. I'm working on staying optimistic, adding in some walking, and trying to remind myself that it's all for the best for my body.

160.
That is what my scale read this morning.  At 5’7, this weight makes my BMI 25, falling just into the overweight category. At 159 pounds, I will fall into the “healthy” category.
When I tell people I have Crohn’s, one of the most stinging questions/comments has been “I thought people with Crohn’s are skinny, or don’t have issues with weight”.
This may be one of the most common misconceptions about this disease. For many of us with Crohn’s our weights change just as frequently as we move our bowels (couldn’t resist a great poo analogy). Many of us get deathly ill, and struggle to maintain a normal weight. Then we get put on steroids, which cause us to balloon up, gaining more weight than we could ever imagine. It is a miserable, desperate cycle. The rapid weight gains and losses along with the nasty side effects of these medications destroy or bones and our bodies, almost as much as the disease itself.
Throughout high school and undergrad, I maintained at a healthy 138-140 pounds. I was at the peak of my athletic shape, due to a new found love of long distance running, but also ate like a madwoman. Even when I stopped running, my metabolism kept up and had no issues with weight gain. I never experienced the freshman 15, or even the freshman 5, and have fantastic genetics. Fast forward a year later to my initial diagnosis. Within 3 months I had dropped from 140 pounds to 115 (underweight according to Mr. BMI). I was struggling to make it through the day, with no energy, and complete malnutrition. It wasn’t until this point did my doctors take me seriously, and start to question if my initial diagnosis of IBS was correct.  25 pounds… no big deal right?
Within 6 months to a year (I cannot remember the exact timeline at this point), I was started on steroids. They worked fantastically. I soon was regaining weight and could function like a semi normal human being again. Except, I couldn’t stop gaining weight. My weight eventually ballooned up to 188 pounds. Within a year to two year time frame, I had gained 73 pounds. Seventy three pounds.
Along with the weight gain, and side effects of the steroids my joints became brittle, and arthritic. I am so so happy that I had established a fantastic doctor/patient relationship, and took myself off the steroids with my doctor’s approval. I was in a weird place in my life, and was so frustrated with everything that once I safely tapered off my meds, I stopped seeing my physician. Maybe it was part of me not wanting to accept what this disease was doing to my body, maybe it was the frustration of the  nasty side effects of every single medication used to treat Crohn’s, and not wanting to admit it to myself that I needed it. Either way, I parted ways with my physician, and went without seeing a GI doc for close to a year. I slowly lost the first fifteen pounds, in that year, and felt that I felt pretty darn good.
At the end of 2013, my symptoms came back with a vengeance. Knowing what I do now about the disease, I was fortunate to most likely be in remission during the time I was without medical care. Sadly to say that is no longer the case. This time around, with a new doctor, we went over a treatment plan. I adamantly refused to take any form of steroid, which my doctor respected. I had also developed severe inflammation and swelling of my liver, which is typically only worsened by steroids, which made the argument much easier. Pending scopes, I was to start Humira if my disease was active, which of course it was. My weight has been slowly dropping, which I am partly okay with. I also have had to deal with gallbladder issues and surgery, which has definitely wreaked havoc in my body. In six weeks we are going to re-evaluate, and go from there.
 Part of me is a bit hesitant to lose more weight. Though I am not a hundred percent comfortable or confident in my own skin at this time, I feel that by holding onto an extra few pounds I will be safe if and when another flare up comes, or this one worsens. It is such f-ed up logic (excuse my language), but it is the absolute truth. By having more weight to lose, the less likely I will be to become underweight, or as severely malnourished as I was before. This way, I can lose twenty pounds and still be “healthy”.
Ideally, I would love to be 145. I have five weeks before I can resume physical activities and exercising which I am eager to start. I just don’t know where I want to draw the line. I know weight is only a number, and people all over social media are all about “non-scale victories” but much to my chagrin, doctors and health care professionals do not care about “non-scale victories”. They care about numbers, and the antiquated BMI charts. They care about pounds, ounces and kilograms.  It is a battle I will never win, but I will do what makes me feel the best regardless of the numbers.

pockets full of demons.

I've gone a bit stir crazy these past few days, and will be returning to work tomorrow, thank goodness. I am hoping to ease into things, and put in a half day, and see where it takes me.

I'm a terrible patient. Maybe it comes from my years of bed rest and recovery from my brain injury, or my italian stubbornness, but I do horribly when it comes to bed rest. Granted, there are days when I cannot leave bed due to pain, and weakness, but as soon as I can physically start walking, I'm up and moving. I find that the longer I sit, or lay around, the more I start to have issues with my mind. As I have mentioned previously, I have PTSD, OCD, anxiety and depression thrown in for fun. My little demons have played quite nicely the past few years, but love to come out from hiding as soon as I'm home alone, or inside too long. My demons hate distractions. As soon as I start working, moving around physically, just anything to keep busy, they go back into their hidey holes. It is such a childish analogy, but it's the best explanation I have.

I managed to take a half mile walk today, which sent the little demons running. I'm hoping that by slowly easing back into work, even if just for a few hours, they retreat further into their caves. I must promise myself not to over do it though, and will listen to my body (not my little demons). I'll let y'all  know how it goes.

day four

Well it's already been four days since my surgery. I look and feel about seven months pregnant at this point- my stomach/abdomen is so swollen and bruised. I think I went into this being a bit too optimistic. Granted, it could have gone worse, but I didn't fully expect to be this sore, swollen and out of it.

I really don't know how the surgery went or how things looked, because I don't remember talking to my surgeon after it. My mom briefly spoke to her, but also doesn't remember, so I have to just wait and see what she has to say at my follow up appointment. I do know that I have two extra incisions (most laparoscopic gallbladder surgery involves 4 incisions, and I have six).

I am also quite anxious to hear the results of my liver biopsies, but again I just have to be patient and wait. In the meantime, I will nap.