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!

Pics of me 2 years post transplant

Naptime, new clothes and me just being me!

Chronic Fatigue

Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.

The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.

There's no single test to confirm a diagnosis of chronic fatigue syndrome. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptoms.


Chronic fatigue syndrome has eight official signs and symptoms, plus the central symptom that gives the condition its name:

Loss of memory or concentration
Sore throat
Enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise

When to see a doctor

Fatigue can be a symptom of many illnesses, such as infections or psychological disorders. In general, see your doctor if you have persistent or excessive fatigue.


Scientists don't know exactly what causes chronic fatigue syndrome. It may be a combination of factors that affect people who were born with a predisposition for the disorder.

Some of the factors that have been studied include:

Viral infections. Because some people develop chronic fatigue syndrome after having a viral infection, researchers question whether some viruses might trigger the disorder.

Suspicious viruses include Epstein-Barr virus, human herpes virus 6 and mouse leukemia viruses. No conclusive link has yet been found.

Immune system problems. The immune systems of people who have chronic fatigue syndrome appear to be impaired slightly, but it's unclear if this impairment is enough to actually cause the disorder.

Hormonal imbalances. People who have chronic fatigue syndrome also sometimes experience abnormal blood levels of hormones produced in the hypothalamus, pituitary glands or adrenal glands. But the significance of these abnormalities is still unknown.


Saturday, September 27, 2014