Saturday, October 25, 2014

Birthday Activities Part I

The first thing we did for my 28th birthday (oct 31) is Denver Downs Farm with Render, our group from church. The farm has all kinds of activities like rope swinging in hay, a corn maze,  hayrides, holding goats, cornhole, pig races, all kinds of things. And we got to make smores and drink hot cider by a bonfire.  To top it off, I actually felt decent. It really took my mind off not feeling well, so im glad for that. And my fiance, Tim, surprised me with a necklace and earring set and my favorite cookies (not that I need them!!)

Friday, October 24, 2014

Pictures of Me & My Life! OCT 2014


I went to the ER last night because I was in excruciating pain, head was killing me, vomiting,  and bad diarrhea.  I was there for 5 hrs and all they did was blood work, even though I told them about the white blood cells in my stool. Smh. They didnt help control anything or try to help me with why it was so bad. Nothing.  Very annoying. It took 2hrs to see a doctor and I saw him for 30 seconds and never again. That annoys me. I watched doctors go in and out of other rooms with older people. Not that I want all the attention, definitely not, but for once id like to get a doctor at the er that takes me seriously,  regardless of my age. And to top it off, they had me in a bed in the hallway next to a guy and with the same nurse as a guy with c diff! Wth?! Even I know thats not smart because c diff is transmitted easily to people with suppressed immune systems by nurses! My goodness! They didnt even read my chart! If they had,  then they would have (I hope) known better.

Anyway, on a lighter note, I'm planning to feel better so I can do some birthday activities! Fyi: my bday is oct 31

Thursday, October 16, 2014

Updates for October 2014

I saw my oncologist on Tuesday.  He's narrowed it down to lymphocytosis.

I saw infectious disease today. I have white blood cells in my stool so hes doing a full stool workup for all kinds of infections. Good news is no c diff.  If he doesn't find anything,  I will probably need another colonoscopy to get more in depth with my tissues in my colon or to see if my Crohn's has started back up. He thonks my last colonoscopy was too early and my symptoms have started back months after it and it may be good to get another one.

So that's where im at!!

Friday, October 3, 2014

Effects of Crohn's Disease on the Brain

Aug 28, 2010 | By Matthew Busse
Crohn's disease belongs to a group of conditions known as inflammatory bowel diseases, or IBD. In patients with Crohn's disease, the digestive tract, also called the gastrointestinal or GI tract, becomes inflamed and swollen, causing pain, discomfort and difficulties with digesting food. While most of the symptoms of Crohn's disease involve the abdomen and the digestive tract, symptoms affecting the brain and the nervous system have also been reported by some patients.


Peripheral neuropathy is the most common neurological complication associated with Crohn's disease, occurring in 0.2 to 35.7 percent of patients with the disease, reports a study published in the February 2005 issue of the medical journal "Brain." Peripheral neuropathy is a condition characterized by damage to the nerves connecting the brain with the rest of the body. Symptoms of neuropathy usually do not develop for roughly 10 years after the onset of Crohn's disease, the study explains. Peripheral neuropathy can cause several different symptoms, such as numbness, tingling or burning sensations in the arms and legs, muscle weakness throughout the body, difficulty walking, dizziness, blurred vision, nausea, vomiting and sexual dysfunction, according to MedlinePlus.


Crohn's disease may cause other neurological disorders in up to 67 percent of patients, the study in "Brain" reports. Strokes and other types of intracerebral haemorrhage and transient ischaemic attack are increased in patients with Crohn's disease. Vision problems may also occur such as double vision, inflammation of the optic nerve, inflammation of the eyeball, and spotted vision caused by leaking fluids in the eye. Crohn's disease has also been linked to Bell's palsy, which is a temporary paralysis of the face. The risk of seizures and muscle tremors is also increased in patients Crohn's disease.


The role of stress in Crohn's disease is somewhat controversial, with some studies finding that stress increases the symptoms of Crohn's disease and other studies finding no relation, reports a study published in 2008 in the journal "Digestive Diseases." However, most studies agree that patients with Crohn's disease have a high incidence of psychological disorders, the study concludes. Researchers are still trying to determine if the psychological disorders are a symptom or related to the cause of Crohn's disease.

Sometimes any answer is best

The doctor can't explain why I slept the way I did and cant remember those several days. He's sending me another neurologist. This is frustrating. People keep saying well no news is good news. Forget that!! To a sick person, no news means no answers means I have to stay sick because they can't fix it! This is no way to live. Don't get me wrong, this is waayyy better than pre transplant.  But daily diarrhea,  vomiting, extreme fatigue,  and constant pain is not fun. And it's not normal! But it looks like I have no choice but to make it normal ugh.

I read an article about the effects of Crohn's disease on the brain and how it causes migraines and memory loss after about 10 years after onset of the disease.  Which I where I am (I was diagnosed 7 years ago,  but I was sick for several years prior to actually going to a doctor). I will find the article and post it on a separate post! It's so interesting and I think all of us crohnies and our caregivers need to read it and give it to your GI! It may actually explain my problems and my doctors are oblivious!  I'm plnning on taking to my gi, neurologist,  and oncologist.  I will let you know their feedback! :)

Sunday, September 28, 2014

Sleeping Beauty

Omg im so exhausted.  I know I've already posted about this a million times but im so sick of sleeping my days away. I wamt to experience life again. It feels like this will never happen

But I gotta keep my head up because God has it all in control!