Here is a very long letter to the CD community that Karen asked me to post. I put it all in, typos, grammar errors, and all. I have the hand written rough draft to prove it. Obviously she has too much time sitting around the hospital or this would have been much shorter 
Begin Letter____________________________________
September 14, 2004
To all my friends on the Chief Delphi forum, thank you for your kind expressions of well wishing, your prayers, and yes even the attempt at truly bad jokes. I think the punch bowl cracked. 
My dear husband, ChrisH, wanted to keep you posted on my status. But since most of us don’t know each other well, he posted no details. Now, if you want to know the disgusting, discouraging, gory details, I’m willing to tell you, with a couple of cautions.
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If you have a weak stomach, you might want to skip this post
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Please, please, PLEEZE do not e-mail me with the latest pill, diet, Aunt Millie’s ever-cure, snake oil, etc. At best they will amuse me, at worst they will upset me, and you don’t want to upset a sick woman, do you? I have enough local friends and family to help me get confused. 
Good thing my team of doctors and nurses is coming to a consensus with me on the next treatment plan.
My Disease
Over ten years ago I developed a disease called ulcerative colitis; an Inflammatory Bowel Disease (IBD). Crohn’s is the other well-known IBD. You’ve probably heard of one or the other of them. They have some treatments in common, but many distinct features from each other. If you want reliable medical information on IBD, contact the Crohn’s and Colitis Foundation of America (www.ccfa.org).
The main symptom of ulcerative colitis is bloody diarrhea, often accompanied by painful cramping. It definitely puts a crimp in my lifestyle! I liken UC to having a “wild card”. I never know when it will be quiet or “flare up”. Medical researchers have some clues about the disease, but the cause is not clearly understood. Therefore, a cure is hard to establish. Current research focuses on the idea that UC is an autoimmune response. The lining of the colon (large intestine) thinks there is an enemy to attack and sets up a raging inflammation with bleeding and ulcers, to ward off whatever pathogen it imagines is invading.
Initial treatment consists of anti-inflammatory medications (sort of like aspirin), and possibly steroids to stop the inflammatory response. After about a year and a half of experimenting with various drugs, I went on a different medication which suddenly cleared up my symptoms.
Since 1995, I’ve been able to live a normal life, except for taking huge yellow pills twice a day. I could control an occasional mild flare up by temporarily increasing my medication.
Last winter I couldn’t get an appointment with my GI doctor because he was moving his office. Not being pushy enough, I didn’t do the necessary arm twisting, ran low on my medication … and had a flare up that lasted all winter … i.e. build season.
Troubling and Amusing Details
With ulcerative colitis patients, after the disease has run ten years and more, the risk of colon cancer increases significantly over that of the general population. Most of you won’t need your first colonoscopy until you’re 50, and then there is an excellent chance that any cancer will be nipped in the bud. With UC, however, it’s a whole different ball game. The ulcers characteristic of the disease make it harder to tell what’s a polyp and what’s ulcerated tissue. UGH.
Anyway, it’s Build season, my colitis is flaring, doctor can’t wait to peek inside my angry gut. When can a FIRST family schedule the colonoscopy? Wednesday, February 25, 2004, the day after ship date, of course! Give my sleep deprived engineer something else to think about besides gears, lifts, and weight issues. He would take leave from work, drive me to and from my appointment, and maybe catch some Z’s while I’m undergoing the procedure.
Does anybody remember what happened to ship date last winter? FIRST outsourced the packing of the parts kits, disaster ensued … the ship date pushed back to Thursday, Feb 26. “Hey, Chris, want me to reschedule my colonoscopy?” “No, better just do it. Never mind the ship date.”
Guaranteed worst part of colonoscopy: the prep ahead of time. 
The scope itself was fine. Demerol is a wonderful sedative. I felt no pain and got to lie on my side in a darkened room watching a movie. The movie was of my own gut, in living and sometimes gory color. It was Fantastic Voyage, but without Raquel Welch. Who would want Hollywood actors running around inside, anyway? Afterwards, the doctor gave me a couple snapshots of my poor ulcerated gut. Results showed my colitis remained confined to the lower end of the gut, a mild case. Afterwards, I went home, took some more medications, and my flare-up came under control while Beach’Bots competed at the Arizona Regional. From then through Nationals and springtime, my gut behaved itself. I enjoyed Atlanta, including meeting some of you at the CD webhug.
The Downturn
If life is a deck of cards, shuffled by unseen hands, one never knows when the wild card will turn up – the Queen of Spades, it seems. Don’t get me wrong – I believe God is in control of EVERYTHING, but I’m looking through a one way mirror trying to see in the dark.
This time I jumped right on the flare-up by increasing my big yellow pills. I made a doctor appointment, and he put me on Prednisone, which I was eager to take. Prednisone is a steroid for controlling inflammation. It’s prescribed by many doctors as an effective remedy for a wide range of ailments. It also has powerful side effects: I was hoping for my favorite side effect – a burst of energy, so I could catch up on a lot of half-finished projects.
Instead, I lost energy, I lost sleep, I lost my appetite, I felt too drugged-out to drive safely. Moreover, my gut raged unchecked. At my doctor’s urging I checked into the hospital Friday, August 20.
In the Hospital
My initial treatment was to receive an I.V. steroid. I was also given morphine, both for controlling pain and to calm down my runaway gut. Also I was given IV fluids, and nothing by mouth for a couple of days to rest my gut. (Compare with putting a broken bone in a cast to immobilize it.) They also put me on antibiotics. Eventually my blood counts started coming back in line, I was put on a clear liquid diet for awhile, then on a full liquid diet. Now I’m on a “soft diet” and get to order my own food. 
They also moved me downstairs from Acute Care to TCU (Transitory Care Unit, - like a nursing home, it’s supposed to prepare patients for leaving the hospital?!) I could write a book about my adventures in the TCU!
Well, I’m still on the IV steroid, but my symptoms aren’t improving. Next step is to put me on Cyclosporine, a powerful immunosuppressant used, among other things, for cancer treatment, and preventing organ transplant rejection. They’ll have to monitor me much more closely for scary side effects sometimes caused by cyclosporine. Doctors, even the surgeon are in consensus – but no one is hurrying. They’re optimistic it will halt my symptoms. If it doesn’t, the surgeon will simply remove my colon and leave me with an ileostomy and a bag.
One step at a time!
Cyclosporine treatment means two more weeks in the hospital; I’ve already been here 3 ½ weeks. I’m in no hurry; life goes on without me.
I wish I could reply to each of you personally!
KarenH
Awesome.