Sunday, September 23, 2007

Indicators of Crohn's

When I went in to get the results on the Capsule Study I was surprised to learn that we learned nothing! My test pictures were normal. There were no signs of active Crohn's. While that is a praise, I am sure you can understand my frustration to not receive a definitive diagnosis.

In fact, in speaking with several doctors over the last couple of weeks, I have learned that there are really no tests for Crohn's specifically, but instead all of these tests are being used to rule out other diseases.

Since, in many of my tests there were indicators of Crohn's, and no proof of other diseases, my doctor believes I have what MAY BE a mild form of Crohn's and has thus began treating me as such.

Beginning treatment:
  • Entocort EC - 3 capsules a day
  • Colazal 750 mg - 3 capsules 3 times a day

Thursday, September 13, 2007

Cleaning Spiritual House

As a Christian, I recognize that there are consequences to my actions. Nothing happens by coincidence. There are no accidents. God is the creator of the Heavens and the Earth. The Master Planner. Sovereign. I also know He loves me. And that He has cast my sins as far as the East is from the West.

But, I still have to wonder why this cup was passed to me. Why this is His Will for me. Not a temporary test, but a chronic condition.

Monday, September 10, 2007

The Waiting is the Hardest Part

Around 12:30 pm Saturday afternoon I finally passed the camera capsule. They tell you to pay special attention and watch for it, so I did. Apparently it can cause problems or intestinal damage should you need an MRI and haven't passed it.

Now I just have to wait for the doctor to review the thousands of images. They asked for me to set the appointment for two weeks later to get the results - TWO WEEKS??? No way. Let me look at the pictures and just tell me what to look for!

They ended up giving me an appointment for this coming Friday.

Friday, September 7, 2007

Bionic Woman ~ Beepergal

Okay - the beeper thing is a little more conspicuous than I had thought it would be. And there are wires attached to leads all over my abdomen and chest. The big black weight lifter's belt is also very attractive. It has made for interesting conversation today. The "PILL" wasn't hard to swallow - and hey - its 12:30pm, I can now have something to eat!

Thursday, September 6, 2007

It's a Clear (Liquid Diet) Day

Today, in preparation for the final test my doctor wants to perform before officially naming me a Crohn's patient, I have to be on a clear liquid diet. Apple juice, jello (nothing red or purple), chicken broth and for a treat today I bought some LEMON CHILL ! As a kid I always loved getting those things at Astroworld (Houston's now closed branch of Six Flags).

Tomorrow morning I will be having an M2A (mouth to anus) Capsule Study. This really sounds like the coolest test yet. I will visit my doc's office to swallow a capsule the size of a large vitamin. His staff will strap a beeper on me, and then I can head off to work. This little capsule - which contains a light, a camera, battery, and a transmitter - will send pictures of my insides to the beeper all day as I go about my usual business at work. TWO PICTURES PER SECOND if you can believe that! At the end of the day I return to the doc's office and turn in the beeper. I expect some time tomorrow evening I will poop the thing out. I will not be returning the capsule to the doctor - ONE TIME USE - thank you.

Here is a picture of how the capsule looks. How cool is that?

Wednesday, September 5, 2007

Mouthsores? Anyone? Anyone?

I am curious to know how your disease first revealed itself. Mine was in the form of mouthsores. For almost ten years now, I would get this breakout in my mouth. It is not the kind of thing you talk to other people about, if you know what I mean (Okay, much of what is related to this disease is not dinner conversation).

It starts in my throat. I feel sort of like I am getting a sore throat, but, there is an odd taste in my mouth. And then it spreads until my entire mouth is affected. My tongue hurts. My gums feel like they are peeling off of my teeth.

The dentist? Oh yes, I went to the dentist, and to my doctor, and to my dentist, and to my doctor. Finally my doctor suggested gargling with a Tetracycline/Benadryl solution and swallowing - twice a day - for ten days. This would make it go away and I would be able to eat. He even wrote me prescriptions so that when it happened, I would already have the meds on hand.

Often? Well no, it didn't really happen all that often, but maybe once or twice a year. I could always relate it to something stressful in my life. Moving, Changing job, Huge project due, etc.

No, nobody ever said it could be Crohn's.

Tuesday, September 4, 2007

Family Support


So, on Sunday, during a meeting with our prayer group I was updating them on my tests and how I am feeling, etc. Actual conversation:

Prayer Group Leader (PGL): Kathy, what is going on with
your tests, do you know anything yet?

Kathy: I have Crohn's. I had a special blood test that they had to send away to California, and it came back Crohn's Disease Predicted.

DH: You do not have Crohn's. They haven't said you
have Crohn's.


Amazingly, no one asked me how they should pray for me this week.

Monday, September 3, 2007

The Alpha

I am beginning this blog today and I am not even "officially" diagnosed. Maybe this entry should be called "The Pre-Alpha"? But, did you ever just KNOW something was SO? One of my doctors mentioned the disease while spelling out a laundry list of things that could be causing my problems. When I got home that evening I researched my symptoms online and this disease kept popping up as a possibility.....I had never even heard of it before. When I read further about it, it was as if a light came on - you know exactly what I mean....it happened to you too! It struck me that day, almost a month ago, that I have probably had this for at least ten years. I am just now, at age 43, being (almost) diagnosed.

My doctor wants to perform ONE MORE test before he officially declares that I have Crohn's, but I have decided to accept it and begin the coping process.

Crohn's and Coping ~ Here is my first bit of advice to help you cope with your Crohn's diagnosis: Journal about it. Blog. Seek out others who share your symptoms and diagnosis. Fellowship. Community. Take a deep breath. Exhale slowly.