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.

Introduction

I am a twenty two year old girl (soon to be 23), who has been recently diagnosed with Crohn's disease. Since having a traumatic brain injury in 2003, I have always had a "sensitive stomach". My health problems from having a TBI overshadowed my stomach problems, whether it be dealing with neurological issues such as epilepsy, regaining simple motorskills or dealing with PTSD and cognitive impairments. I was initially diagnosed with IBS and gastritis, due to the amount of medication I was on, and prescribed prescription ranitidine to deal with the pain, nausea and other issues.

This past January after dealing with the extreme stress of breaking up with a long term boyfriend, I started to really notice more stomach issues. I wrote the issues off as being from stress and ignored the pain and symptoms. My gastro doctor prescribed a stronger dose of ranitidine, and it seemed to take the edge off. As the weeks passed, the nausea, urgency and pain continued to get worse.

At the time I was working full time, and going to graduate school fulltime. I started to become afraid to eat if I knew I would not be close to a bathroom. At one point in February, I was questioned if I had an eating disorder, from being constantly in the bathroom after eating. I was enraged at the thought of this, because I have always loved food, and been extremely confident with my body and weight.

In March my pain was so severe, along with the nausea that I ended up in the emergency room. The doctors there diagnosed me with dehydration and possible kidney stones. I was given liquids, and medication for the pain along with a follow up with a urologist. After seeing a urologist during the week he first said I was misdiagnosed, and that I was suffering from a kidney infection and proceeded to do urine tests, along with prescribing an antibiotic. A few days later, the lab results came in with no sign of infection, my CT scan was clear of stones, but I was still experiencing pain and nausea.

I went again to the emergency room where I was put through a CT scan of my abdomen, chest x-ray, complete blood work up, ultrasounds of my kidneys, gallbladder, liver, and full GI tract. I was diagnosed with a pulled muscle and again given pain killers and fluid, and released later on that night.

The pain was never eased by any pain killer. I had a prescription for an anti-nausea medication, which eased the nausea somewhat but there was no relief of pain or other symptoms. I contacted my trusty GI doc who agreed with me that this may be all stemming from an issue in my GI tract.

I managed to see my doctor in April, soon after I came back from a public health outreach trip to rural villages in the Dominican Republic. The first step we took was doing another complete blood workup along with stool testing, including for most tropical diseases and parasites. These blood tests all came back negative, and the doc decided that the next step would be to a CT scan with contrast. That too came back negative for the most part, with minimal inflammation in my small intestine and illeum. A week later I went through having an endoscopy and colonoscopy complete with biopsies of a few polyps, areas of inflammation and cysts. A week after that I proceeded to have a small bowel series. This too showed a bit of inflammation but nothing significant.

I was prescribed an antispasmotic, which did help a bit with the nausea but the pain and other GI issues were still unresolved. Now, six months after the initial onset, I was prescribed a amino-salicylate anti-inflammatory drug specifically for Crohn's disease. As of today, June 15th I have only taken one full day's worth of medication, and it takes between 3-21 days to fully take effect.

Right now, my short term goals include getting healthy enough to continue graduate school in the fall. I feel extremely fortunate that my family is extremely supportive, and that I am not being forced to work during this time. With the exhaustion, uncontrollable stomach and pain, keeping a normal fulltime job would be close to impossible. I was forced to leave my job in February because of missing numerous days, being forced to leave early or being constantly in the bathroom.

I know I am forgetting some of this story, and will definitely add later, but for now this is me, and my story of dealing with Crohn's.