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. 

Another Hurricane.

So the east coast is backing for another hurricane. Sadly, right now they are predicting direct landfall in a 100 mile radius of where I live. I live in a town right across from barrier islands, and we have a history of severe flooding even when it's a full moon. This will be our second big hurricane in less then a year, and our third natural disaster in that time. We had a lovely Derecho, which is a freak storm that causes sustained wind gusts of over 100 mph. We were without electricity for about a week, and had major wind damage.

As someone with a Master's in Public Health, I tend to worry slightly more about this things. After being forced to study natural disasters and emergency preparedness as a part of my degree, I have a much better understanding just how dangerous storms can be, especially to those who are elderly and have health issues.

Crohns is a miserable disease to have, with or without electric. My main concerns, though as minuscule as they may seem, include the ability to find restrooms, being able to flush toilets for sanitary purposes, and keeping a hold of my daily medications. Right now since I am going through a severe flare up, I am doing my best to take it easy, and stay hydrated because I want to avoid the emergency room at any cost if during a true disaster. I am worried about water supply and food supply, since my body is so sensitive at this time. Plus as all of us with crohn's know, stress is one of the worst possible things for the disease.

Hopefully we get hit mildly, and there will be nothing to worry about. Better safe then sorry. HHS so cliche. Alright time to watch my Gators pummel Georgia!

Emergency room.

Starting Sunday while working, I felt extremely weak and dizzy. I had a large breakfast (delicious bacon, eggs and toast) and was drinking my normal sweet tea and water. I made it through 6 hours of work but I began to feel like I couldn't stand without passing out. I begged and pleaded to go home, which my manager hesitantly said okay to.

I tried juices Gatorade and more carbs. I was thinking I felt kind of flu like symptoms with lethargy and weakness but no fever and no swollen glands. My crohns has been absolutely terrible lately which I thought was the main culprit. This past week I haven't been able to eat much. I go from having an appetite of a horse to barely getting down two small meals. The pain has been ridiculous as well. I also have been dealing with bouts of constipation which is totally abnormal for me.

After a mini pass out episode Sunday night I decided that if I still felt like crap Monday I would go to urgent care (a step below the ER). After a quick check up from the dr there did not like my symptoms and how I looked and sent me to the ER through their fast pass. As I got to the ER I still felt like crap. They quickly did a full lab work up, an while waiting for the results gave me an iv to rehydrate and morphine for pain. My blood and urine showed signs of severe dehydration along with a high white blood cell count, high AST levels (which I knew of beforehand since my liver is having issues) and weird blood sugar levels.

I have been having moderately high blood sugar readings (I'm not diabetic) but it is related to my possible fatty liver disease and poor liver function. The high white blood count is interesting but not uncommon during crohns flares.

Over all the ER doc said to be extremely careful keeping myself hydrated and trying to stay nourished. He wanted to have a gi there perform a colonoscopy but also said that because I have one scheduled within two weeks that it is fine. My GI got a full report and I'm waiting for him to call back.

I hate that my gi is so far away (over an hour). But I feel so comfortable with him I can't change. I have seen the local GI docs (all 3) and haven't been able to form a great patient relationship with them. I'm sticking with dr. C until my insurance runs out.

So plan of action is to take it extremely easy and stay hydrated. And nourished even if food hates me at this time. Ugh life .

Update.

So I've been slacking majorly from this. The past few weeks have kicked my butt, literally. After showing the CT enterography and bloodwork to my regular GI, he was optimistic. Optimistic about me having Crohn's, an Incurable disease? No, optimistic that I have a recomfirmed diagnosis. The past two years, or well much longer thinking back, I have been having the symptoms of the disease. It is common in Crohn's for the symptoms to manifest even years before the pathological onset of the disease. For me, the Crohn's has presented itself on and off through the past two years, but has gotten progressively worse over time, not to mention that I've gone through bouts with no treatment.

I have Crohn's, and will for life. It is slowly damaging my gastrointestinal tract, and now other parts of my body. My joints are continuously swollen, hot and painful. My rheumatologist says I have the beginnings of osteoarthritis at 24. I have zero energy, and am having difficulty staying nourished. My liver has grown to double its size due to inflammation, and I now have a form of Fatty Liver Disease. We are not sure if it is from my steroid use, or Crohn's, since both contribute to the change in cells. My greatest worry is that the damage is permenant, but I am staying hopeful it is not. I am just worried since my liver is poorly functioning from it, leaving my body even more ill. I just feel sick. Like the feeling when the flu is coming and you don't want to leave bed.

Right now my Crohn's is poorly controlled on Asacol HD. Steroids worked for a time, but between my liver and psychological changes I had to stop taking them. The next two classes of drugs, whether it be biologics or immunomodulators, all cause liver toxicity and would put my liver under further stress. At the same time, without having a method to control the inflammation of my Crohn's, my body is suffering even more so. It's a sticky situation.

Dr.C, my regular Gastro who I will be continuing my care with, wants to do another colonoscopy and a push endoscopy, in three weeks. The CT showed severe issues at my ileum, and he wants to see just how bad it is, and while at it, check as much as he can to see the extent of inflammation. This will be my third duel colonoscopy/endoscopy this calendar year, fourth duel within the past 12 months and my fifth endoscopy within the past 20 months.

Thank God for amazing insurance. My life has been put on hold. I will continue to live with my mom until I can get a handle on this disease. My work has been extremely limited, and god forbid I need to take time off, the financial burden is greatly lifted. I'm in a holding pattern, watching my peers and friends around me, have real jobs, their own places, get married and have kids. I on the other hand can barely get out of bed in the morning, and take care of myself let alone thinking about others. This disease is more then just a physical set back, it is taking every ounce of my courage to continue to keep going.

It's terrible to admit, but in dire times, I have wished why couldn't this be cancer, at least with most cancers there are tons of treatment options, and hell now in days it's even glamorous. Hollywood has made it acceptable to have cancer. It sounds so ridiculous. Thousands of people across the nation support the cause for cancer reasearch education fundraisers and support. Crohn's is a unglamorous disease, with no cure, few treatment options, and zero public awareness. I feel so ungrateful writing that. Almost every single adult in this country has donated at least 1$ to the cancer cause, whether it be breast cancer awareness month, Relay for Life, the American Cancer Society, Livestrong, the Susan G Komen foundation...and the list goes on. I am not trying to belittle cancer in any way or compare Crohn's and cancer. It bothers me though, that there is such little awareness of Crohn's disease. Maybe I am slightly jealous. People can relate to cancer, or least empathize. With Crohn's most people don't even know what the disease is, not to mention the full spectrum of the disease, I hope that when I am fully healthy, I can change this.i need to change this.

Anxiousness

These past few days have killed me. I am nervous what tomorrow's GI appointment will bring, with all these new test results. What I do know is that my medication will be changing dramatically and just that I have a long road ahead.

I hope dr. C doesn't hate me for getting a second opinion but it was a gut instinct hehe, and it proved very helpful. I am going to have a difficult time deciding where to further my treatment. Dr. C is over an hour away and if I get placed on biologics it would be a pain to be so far away. On the other hand, I feel much more comfortable with him personally, but the other GI has a great reputation and is so close.

Fingers crossed and many prayers.

Niki

sleep study and ct enterography

Last week I had a CT enterography just as a last ditch effort to see if any Crohn's would show up. The test went fine, save for drinking the terrible barium solution. I put it in the back of my mind, and was not worried about the results, for I had an upcoming sleep test coming up that I was far more anxious about.

I had a MLST sleep test done. It stands for multi-latency sleep Test. Unlike most sleep tests which last twelve hours, this test lasts 18 hours or so, and includes naps. I won't get the results for a couple of weeks.

Today I picked up the results from my CT enterography. They were shocking to say the least. It showed obvious signs of Crohn's disease and in addition, issues with my liver. Part of me wishes I waited until my doctors appointment to hear the news, now I'm just stressing my self out, googling the crap out of the report. I have a GI appointment Tuesday morning, so I must survive until then.