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.