December 10, 2008 ~ Hannah’s Story

I just recieved a comment from Hannah and checked out her blog: Living with Ulcerative Colitis.  I am incredibly moved by her story. This is a young woman with sass and insight. I love you Hannah!!

Please read her blog and consider a donation. She, like many Americans is uninsured with a pre-existing condition, ulcerative colitis. She is too old to receive coverage from by her mother’s insurance and yet young, still working on her education, and cannot afford individual high priced insurance premiums.

Hannah could use your support and she offers many creative ways in which you can do so.  Even if you don’t want to donate,  her moving story of perserverance, told with effervescent honesty will truly inspire you. 

Hannah is a lovely young woman.

September 5, 2008 ~ Letter to my sister’s friend who may have UC (or she may not)

My sister tells me her friend thinks she may have ulcerative colitis. She is enlisted in the Army and evidently her army doctor does not agree. Friend, if you read this, check out Health Talk’s 10 Key Questions About Ulcerative Colitis. If you are the type of patient like me, who wants to be Nice, reasoning that maybe that will get me well, it won’t!  Patients get well when they ask doctors hard questions. You can ask them in a really nice way, but you must do the research and then present it to the doctor.

If after going through the 10 questions, and you still feel you may have UC, I think you should ask for a referral to see a gastroenteroligist.  Only a GI can properly diagnose UC through necessary tests.  Your GP can only troubleshoot.  For me, it was a long period of more than one year, before final diagnoses. Me and my GP had to get through a few other things first.

I had major back pain. We worked on that. I went to physical therapy. I was experiencing depression. She gave me Prozac. She tested my thyroid. Nothing. When she finally couldn’t figure it out what else was “wrong” with me, she diagnosed fibromyalgia.  However, I continued to have gastrointestinal flu like symptoms. She insisted it was irritable bowel syndrome .  Her suggestion was to eat a nice crunchy apple every day. I do this now, but at the time it did not help or change my symptoms.   Eventually she submitted the referral for the GI.   This was back in 1997 and Ireceived the sad news of a UC diagnosis.  I was prescribed my first UC medicine called Asacol.   I believe I had UC since before 1988 because I can remember symtoms flaring during my pregnancy with my daughter.  I briefly went on medication until the symtoms subsided and then I forgot about it.  Now, in 2008 after Asacol, Azathiaprine, and Prednisone, I sit without a colon.  But, I am healed from the disease and most likely will not get cancer.

So friend, I hope you read this. I hope you find wellness soon.

Saturday, June 26, 2008 ~ Differences in Crohn’s and Ulcerative Colitis

I slept very well last nite without a sleeping pill and without anti-nauseau medications. I woke and my temp was normal. I am feeling much more hopeful now. Solid food is staying down and I have gained one pound. This is good because I am down nine pounds from the hospital stay and fast.

It was not until this flareup that I finally tried to understand the differences between these two serious conditions Crohn’s and Ulcerative Colitis. Of course there is plenty of information out there, but putting it in my own words really helps.

Both diseases share similarities making diagnosis difficul: each presents itself as an immune system dysfunction by convincing the body it is sick and attacking healthy cells, causing inflammation and ulcers in the lining of the digestive system. There are two sets of intestines, one small intestine, the ileum and the large intestine, the colon. Crohn’s attacks any part of the GI tract including the small intestine. The small intestine feeds directly from the stomach and is really long, about 30 feet. Its all wrapped and squished up in the inner gut below your tummy. Hence, Crohn’s is the more serious of the two given its potential havoc on the entire GI tract and the very nutrients your body is processing right after its passed through the stomach into the ileum.

Inflammation and ulcerations mess with the body’s ability to absorb food and its nutritive value. While UC inhabits the lower large intestine and this affects the colons natural job of absorbing water and flushing waste. During acute flareups both diseases can lead to symptoms such as bloody diarrhea, dehydration and anemia, extreme weight loss, erratic blood pressure and increased white blood cell count, pain and loss of appetite. However, with the known differences I believe that UC is the lesser of the two evil’s.  Things could be so much worse, afterall. 

Importantly, one must determine the possibility if you have Crohn’s vs. UC. Treatment plans differ and treating one like the other could make you sicker. I had an interesting experience in the hospital in that we were considering putting a pic line (for nutritients). Turns out this not an effective option for UC patients. Because the small intestine works fine in the UC patient, its more effective to try and build up strength and weight through solid food.

Monday, June 23, 2008 ~ First day home from hospital

I woke this morning about 5:30am with 100 degree fever. I take my tylenol, prednisone, other meds. I make a protien shake, down that with a slice of toast, followed by Pedialyte. I am crampy achy. Pass a watery stool, no blood. That is good. I crawl back into bed to sleep a couple more hours. I am awakened by my dear sweet daughter mopping sweat from my body. The fever has broken. Temp is normal. The reason the docs decided to send me home with the fevers is that tests, cultures all revealed no real sign of a significant infection — no c. diff, no pnuemonia. There was a little higher white blood cell count in urine and the thought UTI, but then I had no real symptoms. Plus, the temps only rose early in the am and then return to normal during the day. So after alot of discussion we determined the fever is a result of the inflammation and illness and that I could manage it at home with the tylenol, and naps, liquids and plently of clothes to change (due to the sweats!)

Otherwise today has been a lovely day. I slept on and off. I washed some dishes and did some laundry.

First post from Tad about Carmen’s prognosis.

Tad:

Carmen is currently in Virginia Mason Hospital, awaiting removal of her large intestine.

She will probably correct me on some of this when she posts.

Ten years ago, just after we got married, she was diagnosed with ulcerative colitis.  She kept it under control with Asacol:

http://www.asacol.com/

Six weeks ago she felt increasing discomfort and pain due to a flareup in her colon.  When it gets bad, the pain is excruciating.  She feels much better when she is taking Prednisone, but there are problems.  It lowers her immune defenses, and also makes her anxious.  It is a steroid, and sometimes she jokes that she is cranky with “‘roid-rage”.

Some info on Prednisone:

http://www.medicinenet.com/prednisone-oral/article.htm

http://www.drugs.com/prednisone.html

On Tuesday, June 17 Carmen was miserable at work, and went to the emergency room at Virginia Mason.  She was admitted to the hospital that evening for evaluation.  She was dehydrated and in terrible pain.  She was dehydrated because as she consumed more and more water, it passed straight through her bowels due to the inflamation of ulcers in here colon.

She has been in the hospital for five days now, and is about to spend another night here.  Medical staff were reluctant to release her for several reasons.  Her blood pressure was going high, then low.  She began exhibiting symptoms of insulin-dependent diabetes.  Her blood sugar has gone as high as 192 one day, and 240 the next.

I have been insulin dependent for half my life, and I understand Carmen’s diabetic symptoms are temporary, and due to the high level of prednazone she has been taking.

This is the first time I have blogged.  The intention is for Carmen and myself to manage this and both post about her progress, but we are still figuring out the process.

More later, on what her surgery entails.  There will be two major surgeries, the first in about ten days, and the second a couple of months later.