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.

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.