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.