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!

new symptom

I have feared when this day came, but it has come. This morning I experienced my first bloody bathroom episode. At this rate, I'm more embarrassed and mortified then scared. It is common, ugh, to have blood in stool with Crohn's. I guess I am just relieved that I was warned that this could happen.  Chronic diseases are such rainbows and butterflies, barf. Crohn's and UC are possibly the least glamorous diseases of all time. Even with my friends I am hesitant to tell them my symptoms or how I am truly doing.

Like "oh hey how was your day today?.."
What I really want to say.."Well I woke up, almost shit myself before making it to the bathroom, then felt like a burning hot knife was sliced into my abdomen. Was so weak that I could barely get up off the couch, had another episode of explosive diarrhea then took a nap."

Instead, I say, "it was fine, rested a bit and  watched some tv."

I am not fine, I am not okay. I am frustrated, and in so much pain, but I will keep a smile on my face, and I will make it to tomorrow.

Surviving

In the past year, I have lived through two hurricanes (Irene and Sandy), a derecho(freakish weather storm), 3 colonoscopies, 3 upper endoscopies, a capsule endoscopy, a CT enterography, a MRI enterography, at least 20 sets of labs, a sleep study, x-rays of my entire body (arthritis), 4 ER visits and three GI doctors. Add in two rheumatologists, a determatologist, gynecologist, a pulmonologist(sleep study), psychiatrist, neurologist, and I think I have had my fair share of stress this past year.

Writing it out, I sound like an over-user of health care services, or a crazed girl who gets off on doctors visits. I wish. If my body functioned halfway normal I would be happy. I am a medical rarity, having Crohn's, a traumatic brain injury, and a non functioning immune system. My immune deficiency can be possibly tied to the Crohn's, for people with IgA deficiencies are more likely to have autoimmune disorders. 

I never used to worry before my brain injury(at least I don't think so). It's coming upon my 9 year anniversary, and I'm not far away from living more then half my life with the injury. Before then I was a normal kid/teenager. I rarely got sick, and apart from a couple of broken bones, stayed far from doctors. Post-TBI, I feel like the past nine years has been nightmarish. Do I think that my TBI had something to do with my Crohn's? Possibly. I'm not saying that by being hit in the head, my intestines permanently malfunctioned, but that from the stress, and years of medication, that it definitely worsened the situation. Having a family history of the disease, I was genetically predisposed to it. Do my siblings show signs of disease? They both have stomach issues, although not as severe. Just like having an IgA deficiency, is somewhat common, compounded with the Crohns it is definitely more pronounced and worsened in my case. I cannot fight off even basic colds. I get every illness around me and feel like I'm constantly getting over something. 

This post was initially started to comment on the hurricane that just passed my area, leaving much dustruction. Instead it came out to be a post on what has seemed to be a destruction of my body and me. The past 9 years has worn down my body and mind. I'm sick of procedures and test results. I'm sick of sharing my encyclopedia sized medical chart with a new face each week, feeling like I have to prove my authenticy of sickness. I'm sick of feeling sick. I have heard numerous times that there is a difference between surviving and thriving, right now, I am surviving. Just like those five miles from me who has lost their entire lives in the storm, they are currently surviving. It will be months before the towns are thriving, months or even years before people recoup their losses. I feel the same. Eventually I will thrive again, I will be able to enjoy life, and actually live it, just right now I need to survive the next few months and new treatment. Hopefully on Thursday I will known more, until then, I will focus on getting over this cold.