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.