To Pittsburgh We Go for a Checkup

The family is leaving for Pittsburgh on Saturday due to a scheduled checkup on Monday, January 30. I was thinking it should be fairly routine, but is anything ever routine for me?

So a couple of weeks ago I went to UChicago for a discussion about Tincture of Opium - a drug designed to slow down the digestive system. The goal would be that this would allow the food to linger longer in my small bowel and allow it to capture more of the calories from the food I am eating. I initiated this because I lost weight in mid-December after being in the hospital with the line infection.

During this visit we looked at various components of my blood work. We learned that my liver enzymes were elevated, and my magnesium and potassium were low as well. Great! Another complication.

So what to do - right? That's the question. Well I learned that my liver enzymes could be elevated for one of several reasons. It could be because I am dehydrated. It could be a result of the medicine I am taking. It could be because my Crohn's disease is becoming active again, or long term damage from my Crohn's disease.

Today I learned that it could be a result of excessive bacteria in my gut as a result of how short it is. I guess the physicians at UPMC have seen that often in their short gut patients.

So I'm not sure what next Monday will bring. Today I had my blood drawn so we will see what it says and go from there.

In the meantime, I have had two positive experiences related to my Crohns in the past few days. Over the weekend, I met a teenager who is having surgery to remove his sigmoid colon. As a result, he will have an ileostomy for some time. I was able to meet him, talk about my experience with Crohns and having an ostomy. It was good for me to realize that I have done a lot in my life, been successful at some things and can help others by sharing my story. I expect to catch up with him later this week to see how he is doing.

Then today I was reading an 'Ask the Expert' column from Mayo Clinic. It was about patients who are facing serious health situations, and what works well in creating resilience. They identified four characteristics:

1 - Committment - They have drive a focus to do something, to accomplish something, to be a legacy.

2 - Concentration - They have the gift to follow medical advice, to participate in their care, but also avoid the trap of becoming a professional patient.

3 - Connections - The ability to draw on support of friends, families and a significant other.

4 - Control - Patients are terrified of losing control when one has an advanced disease. So the ability to tackle small tasks they can control is important. It's also important to prioritize energies and focus.

Somehow I saw myself in these four characteristics which gave me hope for the future.

So we will see what happens on Monday, but whatever happens I know that I have resilience and will keep moving forward in a positive direction.

January 2012

The past month has been pretty positive with only a few setbacks. The setbacks were a brief hospital stay for a line infection and some weight loss. The weight has stabilized which is good so now I need to gain a few lbs back.

But overall I am doing better. My endurance is improving weekly. Work is going well. Family life is good. The kids enjoyed Christmas and New Year's.....and I got to work over the Holiday Break which I would not have imagined in August and September.

My next steps are to visit UChicago to discuss tincture of opium to slow my gut down, and a trip to UPMC to see Dr. Kareem and touch base on my wounds.

I appreciate all of your care and concern. I will try to post monthly to keep everyone up to date.