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.

Done

I hate waiting on test results. The Lialda is much worse then the Asacol HD. Though neither controlled my stomach fantastically, the Asacol HD took some of the edge off. Lialda does absolutely nothing, and I've been feeling like garbage. My work is suffering from this as well. Since I'm just waitressing at this time, it is not only extremely physical, but I also have been spending lots of time in the bathroom.

Waitressing is not an ideal job for someone with Crohn's or and IBD. I have tried applying for disability, but have been rejected until I have further documentation. They also said that I would be able to work at a desk job. That is completely true, yet I cannot find a "desk job". That would make my life a million times easier.

I'm so frustrated. Two more weeks till next appointment. I need a way to control this. My quality of life blows at this point, I'm just at my wits end.

BeerMilk

I love beer. Any kind of beer. I used to do inventory at a bar that specialized in craft beers, and feel in love with beer. Not just the taste, but the revolution of the beer industry. Home brewing has exploded, and beer now comes in almost every flavor known to mankind. I'm slightly obsessed to say none the less.

My stomach HATES alcohol of any sort, even my beloved beer. I settle for a sip or two here and there but if I drink more en half a beer, I feel the consequences for days.

Instead of relaxing with an ice cold pumpkin beer to celebrate the fall, I am treating myself with an ice cold glass of organic whole milk. For some odd reason my body can process lactose completely fine unlike many other Crohn's patients. I take joy in the little things at this rate.

Sixty

60 hours of work this week. Good thing I don't typically work this much, I could never keep up. There is no way I can push myself to do anything tonight. My stomach has been terrible this past week, and besides working so much, I'm definitely feeling run down. Lialda is not working as well as the Asacol HD(even though that just took the edge off). I've been chomping through my bottles of Levbid and Lomotil, so I can get through the work days, but even on those, I'm having severe episodes, and feel that I'm constantly in the bathroom.

At this rate, until my next appointments, I'm just going to try to do my best to keep hydrated and to try to keep food down. I really don't want end up in the ER, since I've been I'm this position before. Yay for Pedilyte, and baby food.


I just want be to a normal 24 year old!!

Last week, I left off, mentioning that I was going to see a new GI. Last Thursday, I met with my fourth GI since the start of my issues. Overkill? Maybe to some, but my case seems to be extremely difficult and baffling, and I just need some reassurance at this time.

Yet another physician is puzzled at my medical chart, and I'm under going more testing. See my first upper and lower I ever had showed Crohn's, yet since then in my second, third and fourth endoscopes the docs can't find it. I am still having all the symptoms, and even worse... But they don't know where it's lurking. Crohns doesn't go away, so they are questioning whether it is truly Crohns, or if there is something else wrecking havoc. Right now, my doc is definitely diagnosing it as an inflammatory bowel disease (IBD), and most likely Crohns. I had a CT enterography yesterday with hopes of showing something.

This leads to a conundrum. My doctors want to re-confirm the diagnosis, before subjecting me to the next level of treatment, medication wise. You know how every medication from the pharmacy has some kind of warning label. For instance, may cause drowsiness, do not operate heavy machinery? Or caution may cause dizziness? I seem to be an anomaly. My body tends to be very sensitive to medication and usually end up experiencing most of the side effects of the drugs I have taken. With Pentasa, I had full blown hairloss, which only happens in like 5 percent of people that take it. With Entocort, I had everything from weight gain to mood swings, and everything in between, even though doctors said that those issues are rare compared to Prednisone. Prednisone was even worse. The next class of drugs, has many more side effects, including tumor and cancer causing. 

My docs and myself really do not want to move on to this next level of treatment, yet there isn't much else left to do. My daily life is severely interrupted, and I feel like crap. Hopefully within a few weeks I'll have more answers and a new plan 

Limbo

I feel like I've been in limbo for sometime. Crohn's has severely diminished my social life. Feeling so disgusting daily makes it so un-motivating to leave the house or to go out. With swollen joints and constant pain, I don't want to leave my bed, much less get dressed up and go out. What makes it even worse is that most of my friends like to go out to eat or drink. Most people say oh you don't have to eat or you don't have to drink just come out. Well that's fun once in a while but for the most part it's so extremely frustrating. Part of it is jealousy for I want to eat and drink as normal and another part is frustration. It's not fun sitting around sober being with a group of hammered friends, constantly being the responsible one, the designated driver, the puke clever upper or the one who listens to beer tears. It blows after a while.

Even when bars and food aren't involved, Crohns ruins most things. Take sporting events which I love. Typically when I leave the house I make a mental notion of where all restrooms are. Sporting events typically have disgusting bathrooms, and with how I've been, I tend to spend more time in the bathroom then not and I end up missing half the game.

I've put dating on a way back burner for now. Casual dates are even worse. Crohns is a disgusting disease plain and simple. Like oh hey I have this problem where I can't control my body functions, need to stay within 15 feet of a bathroom and may puke on you at any time. The whole swollen joints, and thinning hair really make the whole package. Crohns in someone has taken away my dignity. I have had bathroom accidents at the age of 24. How am I supposed to explain to a guy on the first date my numerous bathroom trips and how some days all I can manage is baby food. I'm afraid to be intimate because of my constant pain in my stomach and intestines, and my lack of control of my bowels haha god that sounds just gross.

At the same time I feel like i am wasting away what's supposed to be the best time of my life, searching for an answer and for relief.

I don't even know where to start or what to do next. All I know is that soon I will be healthy. I cannot continue to let this disease over take my life.

Sicky sick

Since tapering off the steroids, I have felt like crap. Though meant to treat my tummy, they also controlled my asthma, allergies and eczema. Between going off, and experiencing the season change, this past week has left me feeling like garbage, in addition to my stomach not behaving. My joint pain has also come back, and I just feel so out of it.


I'm supposed to run a half marathon Sunday, but I will decide how I feel later in the week. I'm not going to kill myself over it, and stress my body out further.

I'm anxious to have another doc look over my case tomorrow. This will be the 4th GI I've consulted. Since my body seems to reject any treatment, and is super sensitive to side effects, I'm looking for alternative treatment options at this time, rather then conventional medication. I'm beyond frustrated at this point, but I got to take care of myself while I still have insurance.

In other news, the roid rage has diminished and I'm feeling normal again. Well my kind of normal. No more racing thoughts, or severe depression and anxiousness. I still cannot believe the effect the steroids has on my mental health. I'll update after my doctors tomorrow..

Work.

In life B.C. (before Crohn's), I have always managed to hold down some sort of part time job and go to college full time. Long hours had no effect, and I felt well pretty much invincible even with a brain injury. Crohn's has made work, and looking for jobs an absolute nightmare. I lost my first job (a simple management position in retail) due to my absences from being sick. I was u justly fired, threatened a law suit and was given a decent severance, yet no job back. Since then my part times job included teaching preschool, bartending and serving.

I love teaching preschool, but due to having a terrible immune system from.  My immunosuppressive medications, I was literally sick every other week. The commute was also terrible, and sometimes took 2 hours to drive to work, and had more then one or two accidents on the way.

I soon found a closer job waitressing/ bartending with an extremely easy going boss, who was very flexible knowing my sickness, and school schedule, since I was still finishing my Master's at the time.

Right now, I am kind of in limbo. I am a teacher assistant for two courses this fall at my university (since you need a doctorate to be a full professor at my school) and I love it, it just is kind of sucky pay. I am in class for such little time, which makes it awesome for someone with Crohn's. The only thing that sucks career wise, is that if I want to be a full professor, that means I have to go for my doctorate, which would be another two years of school. Right now, I am going to start looking for a job at a different university,in hopes to get some form of tuition reimbursement formy PhD.

Ugh just feel like I'm in limbo.i don't feel healthy enough to work full time, especially since I'm going through yet another flare up. I want to work 40 hours a week and be productive, yet my body can't keep up. Just so frustrated. 

life with pre-existing conditions

health insurance. Not many twenty somethings even think twice about health insurance. You go to college, get a job and automatically get enrolled in health insurance and don't think twice. Once or twice a year you end up in the doctors, with a cough or the flu, but definitely under utilize insurance, and don't really understand how it works, or even care to know how it works.

My life is the complete opposite. I go to the doctor's about twice monthly. Between having a neurologist, rheumatologist, gastroenterologist, GP, gynecologist, and psychiatrist, I feel like I am swimming in a sea of physicians. Having both Crohn's and a TBI, its not that I have a love of physicians or healthcare, but its more that I cannot live a normal daily life, without being under medical supervision. I depend on medications to allow me to live a somewhat normal, productive life. I hate putting these things into my body, but at the same time, at the points that I have stopped taking all medication, I was forced to be bedridden, and never able to leave home. It is a double edge sword. I hate that I can't survive without medications, yet at this time in my life I need them to survive. With prescribed medications, most physicians require regular appointments to make sure that everything continues to work okay.


I do not think twice about scheduling doctor's visits, especially with my current insurance, with no co-pays for specialists, and a small minimum deductible for a family of 7. I have one of the best insurance plans out there, with no referrals, pre-certs or auths needed in order to utilize the health care. My insurance has not once denied any coverage, whether it be my three colonoscopies in 6 months or my 5000 dollars a month regimen of Crohn's medications. I am extremely thankful of how generous they have been.

What I do think about though, is that in a little under 23 months, I will lose my insurance. Going forward, I have two pre-existing conditions, which will turn my life around. Though in 2014, the US government will put into place further laws that hinder insurance companies for outright rejecting you from coverage, the laws do not strictly enforce price gorging that happens. Even with PCIP, Pre-existing Condition Insurance Plan, which is a high risk pool set up, partially supported by the US Health Service, premiums and deductibles are outrageous, and quite possible of bankrupting those with severe illnesses. Once again a double edged sword. Like oh hey you can have health insurance, but let's charge you astronomical prices so you cannot actually utilize the services.

Though I currently do not have a full time job, even when I get one, I will most likely be rejected by their insurance company, regardless of the employer. I do not just have to worry about rent, car payment and car insurance, but the cost of health care. I've read countless stories of those who lose everything due to health issues. It scares the crap out of me.

Roid Rage

Well the past few months on steroids may have made my stomach issues more tolerable, but now I'm dealing with the lovely mood swings, aggression, anger and depression associated with these drugs. I have always been extremely sensitive to steroids, whether it be prednisone for severe eczema/allergy flares as a kid, or my first rounds of Entocort. A few doctors say "oh no, prednisone and Entocort will be safe with your history of anxiety/depression/PTSD", even though I argue with them about it. I know my body better then anyone else at this point. It is so frustrating to see these changes within my daily life, and counting down the days until I am fully tapered off, and returned to normal.

Since I will have to stop the steroids, I'm anxious what the next course of action
may be. 

My joints are still terrible, but I am doing my best with taking it easy, training and running smart, and making sure to stretch, rest and ice as needed. My new rheumy was extremely thorough, and was worried about how much I sleep, amongst everything else. For the past nine years since my TBI, I have required at least 10 hours of sleep every night, as well as napping daily. Most nights I get about 12 hours. No other doctor has seemed to be concerned with this, aside from the neurologist at DuPont, over five years ago. REM is directly related to how well the immune system works, which is crucial in immune disorders like Crohn's. Non-REM sleep is said to even put the immune system in overdrive, which can make Crohn's worse. Lovely. So I'm having a sleep study in a few weeks to see just what is going on, and I'm anxious.


I'm starting to feel like a hypochondriac. It's hard to relate enough with having Crohn's disease, not to mention the severity of having a TBI. I have finally met and talked to others with Crohn's, but really haven't spoken to many people with TBIs that I can relate to. I had a moderate TBI, and feel out of place. Having both conditions makes me feel even more like an outsider, a medical rarity and a freak of nature. 

Team Challenge!

This past week, I got a chance to meet with Team Challenge Philadelphia! Team Challenge is an endurance sports training program. The program provides training to run/walk a half marathon. Participants raise funds for Crohn's and colitis research and patient services in exchange for training, support, and expenses for the half marathon. This season, we are training for the Rock and Roll Half Marathon in Vegas, on December 2. What is amazing awesome to me is that for every dollar donated, over 80 cents gos directly to research and patient services. In other well known non profits, such as race for the cure, less then 50 cents of each dollar goes to these services and research. I will try to update much more frequently, on my training but also with my Crohn's. I have run multiple half marathons before, but this will be my first since my Crohn's full diagnosis, and will be much more difficult to train for, with a flare up, and joint issues at this time. I can't wait for the next 4 months of training and fundraising to come!


 Here is a link to my personal donation site as well: Nicole's Team Challenge Page


  Thanks guys and happy Saturday!

still frustrated

So these past months have led to more frustration. On my last colonoscopy, though my doctor visually saw Crohn's, the biopsies came back normal. He noted that he was upset and regretted not taking more biopsies, ugh. By textbook definition, to be Crohns, there should be microscopic evidence, from a biopsy to confirm the disorder. My c-reactive protein is going absolutely crazy, and my joints continue to swell. He put me on Entocort, considering my terrible history with Prednisone, and it's made a dent in the pain, inflammation and bathroom issues. I have managed to stump one of the country's leading Crohn's specialists... I have blood work, exact symptoms, and even visual confirmation of Crohns, yet no biopsy to confirm it. Right now, he wants to collaborate with the head of Rheumatology at the university. Even if it is not Crohn's, whatever my body is going through is definitely autoimmune. We are going to still considerate it Crohns, until proven different. At this time, I just want answers. I can't stay on steroids forever, or any length of time since I already have none and joint issues. A the same time, without the biopsies, Docis hesitant to prescribe a tnf blocker like Humira or Remicade. Both of those are better long term solutions, even if they do present other side effects. It would be a totally different story if I could feel great and live life normally. The fact that my life has become shambles because of being sick has made this whole situation even more stressful.

Well, another colonoscopy Thursday. This time, there were obvious signs of Crohn's, with some lesions / abrasions. I'm scheduled for a pill cam endoscopy Monday, since my terminal ileum is really affected, and my doctor thinks it may also be in my small intestines. We are also waiting for biopsy results from the colonoscopy endoscopy. With the results of the biopsies, and pill cam, we will decide on a treatment regimen to hopefully induce remission. Lately, with the heat, my joints have become even more swollen and achy. I have the same issues as my 83 year old grandmother. She has rheumatoid arthritis, as did my great grandmother, which is interesting since it is another autoimmune disease and has similarities to crohns. In fact they are often treated with the same meds. I am also going to be referred to a rheumatologist, since I have visual signs of arthritis, and have already had joint problems due to a wretched car accident a few years ago. I am anxious to see my treatment regimen. It is scary knowing the potential side effects of any choice out there to treat crohns at this stage, either immunosuppressants or biologic. Im still waiting to hear back from social security disability. That has been nerve wracking, but there is no possible way at this time I can maintain a job. I hate hate hate relying on the "system" but until I am healthy it is near impossible. Just hoping that the pill cam goes well, hehe, and I can get started with treatment

I hate complaining I really do. So the past three and a half weeks I've been on Asacol HD. Though not a cure all, it has reduced my frequency and urgency, which has been awesome. On the other hand though, my joints have gone out of control. At night my ankles swell up to the size of softballs and I can barely make it up,or down the stairs. Every joint of my body has been on fire, I literally feel every move, and it's terrible. I haven't had this much physical pain since my car accident. I feel like I have rebroken my bones, it is that painful in places. I have another endoscopy/colonoscopy scheduled for Thursday, with numerous biopsies and possible strictureplasty if need be. I also will be seeing a rheumatologist along with getting a DEXA scan in a few weeks to see just ow bad my joints are. My GI was surprised at the swelling on the joints just at a quick glance. I was given Mobic(sadly an NSAID), just for the couple of days before my procedure to try to manage the pain. Next course of action will be an immunosuppressant or biologic, trying to hit oth the arthritis and Crohn's. Since I have a history of rheumatoid arthritis in my family, my GI and rheumy need to see what kind of arthritis is present. Crohn's is a disease that just keeps on giving, or should I say, complicating. I feel like absolute crap, and am in the process of filing for disability since its made it impossible to work. Like oh hey I'm 23 but some days my joints are so sore I can't make it out of bed, or some days I end up in the bathroom 20+ times, but please hire me. I am a liability to a company, even if by law I cannot be discrimated against, but I feel like it has happened in the past. I'm looking for a job where I can work from home..lgranted I still have the mental capacity to work and get things completed, but my physical abilities have been limited. I am praying that disability comes through, for I am barely making ends meet, even while living at home. I'm scared to death when my student loans start to role in. The next few weeks wll be chaotic but I hope I can et some answers and hopefully new treatment.

Week one of Asacol HD complete. So far, not much relief. The past few days I have cheated on my low residue diet and am paying the price big time. With sissy's college graduation and a date, and mother's day all in one weekend, cheating was bound to occur. Sunday I managed to lose tracked how many visits to the bathroom that occurred, though I was up to 13 or so at around 3pm. Today the dehydration, pain, and exhaustion definitely set in. It frustrates the crap out of me, maybe even literally haha to not be able to eat like a normal person. I wish that I hated cooking, and disliked food. It would make life a million times easier. Now back to the date. Went on a first date with a guy Friday night, to where else but dinner.as you may know Crohn's gets abut a million times worse with nerves and stress so I made sure not only to try to stay calm, and load up on Lomotil before the date, but also to strictly monitor my food intake for all of Friday. Dinner as of course served with a family style salad, which I couldn't pass on. I was truly nervous, and couldn't decide if I should tell the guy right away about the Crohns or just stay quiet and hope that no excessive bathroom visits were necessary. It kind of just Came up in conversation. I gave a brief explanation, as I practiced in my head countless times before. Part of me kind of regrets telling him right away, but at the same time it's out in the open. Time will only tell where it goes ormifmitmwill even move past a first date. I'm just happy that I am getting more comfortable speaking about it, and coming to terms with the disease.

So it has been a few months. In the past four months I have been through a lot to say none the less. I started seeing a new doctor as of January through Cooper's Digestive Health Institute. Dr.C was wonderful, young, smart and definitely relatable. After reviewing my medical chart the size of an encyclopedia, she decided it was best to do another full blood work up, along with a colonoscopy/endoscopy (second set in six months), and an MRI enterography to try to see what was going on with my tummy. My blood work had high levels of C-Reactive Protein, and also high ESR rates, both signaling inflammation. She also tested for Celiac IgA antibodies, and also did a complete thyroid workup. My previous doctor also tested me for Celiac, as well as completing biopsies during my second endoscopy, which was again negative for Celiac. Colonoscopy/endoscopy came back clear, as did the MRI enterography... no signs of Crohns. Though it was good news, it was kind of puzzling considering my constant symptoms, as well as my blood work being all kinds of crazy. She then thought it was best to try to treat me for IBS, first with low doses of Elavil, then onto Lotronex. I was weary to take even the small dose of Elavil (I started at 5mg, and moved on to 10), due to my previous history of anxiety. I know from the past my body hates changes even the smallest doses when it comes to antianxiety/ antidepression meds. To no surprise after being bumped up to 10mg, my anxiety went off the charts, and made my stomach even worse. After taping off Elavil, the Doc decided to try Lotronex. I have read about Lotronex in the past, and was a little hesitant to try it with the black box warnings. Lotronex is a fun newer (ten years old or so) medication that works well in female patients with IBS. Lotronex can cause ischemic colitis (decreased blood flow to the colon), and possibly resulting in death. Lotronex sadly did not help whatsoever with my d. I noticed a little bit more C with the drug, which is to be expected but still no help. After this latest try, my physician then referred me to an IBD specialist, seeing that oh hey I didn't respond to IBS meds, so it must be IBD. I have spent the last three weeks without any medication, save for my handy dandy Prilosec, and Lomotil as needed. Lomotil is more of a safety med.. taken prn, it is basically a bandaid for the D. I was close to losing my mind during this time. Not only having my chronic D, but I have been feeling so swollen, and sore. My body felt so incredibly inflamed. I could see the inflammation in my joints.. from my fingers looking like vienna sausages to my ankles resembling grapefruits. Yesterday I met with the IBD specialist. He has been the first GI doctor to actually look through and read my entire chart in front of me. He made me explain when my stomach issues started (as a kid with daily stomachs and cramping), to the gastritis after my TBI and the past year when my symptoms went absolutely ridiculous. He was surprised it wasn't noted anywhere that I have a familial history of IBD. He also made it a point to differentiate between my nausea and vomiting and then the other stomach issues. The gastritis, and heartburn/ acid reflux, can be attributed to my TBI and all the fun meds used to treat that. At least one issue out of the way. He then changed my prescription PPI, and within a day I already feel relieved. Then on to the mystery of my bowels haha. In my first combined colonoscopy/ endoscopy, it is noted in that several polyps were removed from my slightly inflamed ileum. In the pathologists finding, there was noted inflammation, yet NO doctor in the past two years has told me this until yesterday. This combined with ASCA positive antibodies, high C-Reactive Protein levels and high ESR rate, and another differential diagnosis of Crohn's disease. So second Crohn's diagnosis within a year. This finally answers a lot of questions. No I am not dreaming up my condition as one doctor suggested, and no my accident/ TBI did not leave residual damage to my stomach resulting in issues, and no I do not have IBS. Yes the stress in the past years could definitely contribute to the flare-ups and attacks, but having all the clues in front of us, it is true Crohn's. Though my last colonoscopy/endoscopy was clear, my old doctor only took two biopsies from the same place, which leads to no pathology of Crohns. I started melasamine again, this time in the form of Asacol HD to try to really target my colon,since Pentasa is released in a different spot. I have another appointment in 3 weeks, and another colonoscopy is in the future but I am okay with that. I hope the Asacol HD works, though it is only approved for 6 weeks of use. We will definitely see, and only time will tell with this, but I am in it for the long haul (eh).

Today, I took two naps totaling for over six hours. Not one meal stayed down, and I just am wiped out.

I feel like Entocort is the biggest waste of time. After 3.5 weeks I have noticed no real improvement. At about week two I had a little relief but it subsided quickly. Both my new doctor and I are trying everything possible to avoid prednisone, since I have had miserable experiences with it in the past. Since my crohn's is mainly in my ileum and Entocort is specifically targeted towards the ileum we thought we would give it a try. Since it hasn't worked, the typical next course of action would be prednisone, but I'm really pushing for Humira, Remicade or another biologic.i know they come with many side effects, but I absolutely refuse to subject my body to prednisone. The weight gain, acne, joint pain are bad enough as it is, but prednisone also triggers many psychological side effects in me, perpetuating my anxiety and PTSD through the roof. Monday can't come soon enough. I am really trying to follow my training schedule for upcoming runs, but right now with zero energy, and crazy bathroom issues, I've had to take a few steps back, which is so frustrating. Fingers crossed

Well, over six months later and still tring to navigate this miserable disease. Current meds for Crohn's include: pentasa, omeprazole, Bentyl and entocort ec. I just switched to a new doc, and went through a complete blood work up, as well as an MRI enterography. The past month or so has been complete hell. The inflammation has spread, from my joints acting up (hello every joint I've abused in the past decade) to inflammation in my eyes, making it harder to see at night, and just felling like crap. I don't know if it's from the Crohn's or the entocort, but I also feel like marshmallow man, being so swollen and puffy. Pentasa worked wonders for me at first, but the pain and some of the n+d has come back and I can't deal with it. I also am sick and tired of welling feeling so tired and run down. I've been averaging over 11+ hours of sleep a night and still am exhausted. I haven't felt this bad in a long time and am crossing my fingers for a better way to treat this.