And we have a tentative diagnosis

How did today go? I am not sure. I am still processing my feelings, my worries, my thoughts. No one ever wants anything to be wrong with their child. Everyone always wants the best possible outcome.

A polyp or a hemorrhoid would have fallen into this category. Something little. Something that can be fixed. Something that is not chronic.

The other end of the spectrum included things I couldn't pronounce. Along with celiac disease. Crohn's disease. Possibly even cancer. I can be thankful that was not the diagnosis.

In so far as we have a diagnosis. The doctor won't commit to it until the biopsies come back.

I awoke this morning to find that my blog was down. Nothing I could do about that, but I really didn't care that much. I was a little nervous and expended a little of that nervous energy scanning a couple of forums but I couldn't concentrate enough to really read anything. I was nervous and excited. Finally, hopefully, I would know what was wrong with my little girl.

We got to the children's hospital a little early. It is such a nice place. Such a welcoming place. And such a sad place. There are so many children there and I do not like to think about what it would be like to have that place a regular part of our lives, no matter how nice it is and how friendly the staff is.

The nurse and staff did a wonderful job of explaining to Mouse exactly what was going on and what to expect. Her curiosity was beginning to get the better of her anxiety as she asked a ton of questions and the staff patiently answered them all. Her nervousness completely evaporated the moment they told her that they would administer the anesthesia before giving her the IV. That is all she was really worried about. A little of it came back this evening when she realized that those great big pills were going to be a part of her life now. But even that she got through. Hopefully tomorrow won't be as bad since she has to take even more.

Not only did they do a colonoscopy, but also an EGD where they went down through her esophagus, her stomach and into the top part of the small intestine. Everything with the EGD looked normal and healthy.

The colon was another matter. From the rectum to the transverse colon (the part that goes straight across the top of the small intestine) was inflamed, fragile, mucousy and bled easily. Because this was isolated to the large intestine the doctor is tentatively diagnosing ulcerative colitis (UC) but is awaiting the biopsies (next week) to be sure.

I know I should be thankful. UC is not as serious as Crohn's because it does not affect as much of the digestive system. It does not reach as deep into the tissues. But it is lifelong. It is chronic. And it can have complications. These are the parts my mind is having difficulty moving beyond right now:

• Ten percent of patients die if the first attack is sudden and severe.

• Twenty to twenty five percent of patients eventually require the removal of the large intestine. This is usually successful, and cures the disease.

• Intestinal perforation occurs when long standing inflammation of the bowel develops ulcerations. The contents of the bowel may spill into the abdomen, becoming life-threatening.

• The inflammation can cause a relaxation of the abdominal muscles, causing the intestine to stretch. The intestinal lining can then break, resulting in peritonitis, another potentially life-threatening condition.

• The risk of cancer increases with each year. Ten years after diagnosis, the risk is 1%. After 15 years, it is 10%. After 20 years, it is 23%. After 25 years, it is 42%.

Twenty five years from now, my little Mouse will be the same age as I am now. I am not really feeling all that thankful. I am feeling more sick to my stomach. OK. Maybe I am feeling a little thankful. I just finished reading an eight page document suggesting how this disease can be handled in school. There are a number of recommended accommodations, but given the disease's unclear protection under the law, school can be problematic.

Mouse won't have to deal with any of that.

Thank you everyone who has left comments and sent emails. I've read them all to Mouse and she always smiles. She appreciates them very much. We all do.

ulcerative colitis