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.