Friday, August 10, 2012

# 129 - Scars and Hurdles

One of the side effects of having Addison's disease is to have severe abdominal pain. In my case, that has been one of my hallmark Addisonian issues since my diagnosis in 2001.

For those of you who are regular readers, you might know that my gall bladder suddenly died in 2009 which led to a series of abdominal surgeries that were not pleasant. I laid in my master-bedroom with a dying gall-bladder and extremely ill because, at first, I could not tell that it was different from regular Addison attacks. However, within 24 hours, I was telling my household that I KNEW something wasn't right. This was a hospital trip I dreaded, and one problem seemed to boomerang into the next, from the gall-bladder onward, for the next several months. And here I am now, with severe abdominal pains that have steadily increased over this past year and another go-round with already knowing something isn't right.

This summer I had a CTScan that showed several potentially serious issues and today I finally met with a very experienced gastroenterologist with Baylor. Thankfully, he wants to try to keep me out of the hospital --- which I cannot express enough to others how much I detest being in the hospital --- I am beyond grateful to him for this concession. However, he spoke very plainly and straight-forward to me today about the high risks involved for the colonoscopy and endoscopy he wants to do as soon as possible. There are things he can't see unless he performs these tests. And he said he needs to get in there and take a close look around, from top to bottom, literally. At least I have my humor intact!

Any time you've had abdominal surgery to the extent I've had, you run the risk of scar tissue being a problem for these tests. Due to the nature of my past three abdominal surgeries, he said that I'm at a high-risk for perforation during the procedure. He told me he'd avoid it as much as possible, but that I am definitely high-risk for this to occur and there's no way around it, other than to not get this test and go for a barium enema-style test they did 30 years ago. However, with Addison's that will present its own set of problems. Plus, he can do the colonoscopy and endocscopy under the same anesthesia. I just asked him to please use different equipment for each end!

Anyway, he was a straight-shooter and said that I needed to be very clear that since perforation is such a high-risk for me that I needed to know, if that happened, it would require immediate, emergency surgery. He said that the surgeon he is selecting will be vital because this is when experience is key to knowing when to not keep pushing the scope against resistance.

In fact, he gave me his typed paperwork upon the end of the appointment that said in writing, "Best to try to have endoscopy and colonoscopy exams with anesthesia but not certain if exam can be completed due to surgeries, increased risk of perforation and incomplete exam."

Yes, I understand. Clearly. I'm not jumping up and down, but I get it.

After giving an old-fashioned exam of the abdominal area with probing hands that could probably feel a question-mark easily, he brought in one of those "prepping" packages for a colonoscopy, which I cringed at seeing. AUGH! If you've never done one of these, don't let it stop you from having a colonoscopy, but I will admit, it's not a beautiful experience! With Addison's disease and the problems I have abdominally, he gave me two days of additional instructions for prepping, but it's been so many years since I've had one of these tests that I'm already dreading it.

It's good that I brought it a CD copy of my CTScan along with a report because he read the report and said there was a big problem with it. This is another area when an experienced doctor can be hugely beneficial. He said there was no way the dictation on the report was transcribed correctly. So, he has sent off my CTScan CD to another radiologist for a new transcription and correct report and he put this in writing to me as well. This doctor was one thorough dude. I've NEVER had a doctor do this before today. I have teams consult with each other, but never have had a doctor literally say that he didn't trust the report.

Usually, they will order tests to be repeated or will order different tests, but they rarely admit that there is a problem with the original radiology report and I've never had a doctor tell me that they are having the scans looked at by a second radiologist so a second report could be drafted on the same CTScan.

There's a first-time for everything!

Therefore, take the time to get copies of your radiology work-ups to take to any other might be worth your time.

There were other things we discussed that were a little hard to hear, but I am taking it one step at a time. I'll wait to get my testing done and to see if I make it out of there without emergency surgery before I start to tackle the next issue.

Since I am babysitting my five-year old niece until the 27th of August, she is my shadow. Well, as she'd say, she's not just five years old, she's ALMOST six as of the end of this month. She went to this appointment with me, and I am proud to say, she behaved like a little doll. I brought along a notebook full of blank pages, and since she can read, I wrote two pages of questions, leaving a blank after each question for her to write her response. It worked out wonderfully. She kept busy with her notebook, reading each question and using the pen I'd attached to the notebook to write out her carefully written answers.

And yesterday, before the appointment, I went ahead and showed her the scar on my abdomen so she would not be shocked by it upon the exam. Thank God I did because exam time came and it was no big deal. However, I was not going to take a chance since she had discovered the scar at the back of my neck a few weeks ago, from my cervical spine reconstruction --- as I was putting my hair in a ponytail in front of her as she sat on my bathroom countertop --- and she began to tell me there was a bad "sore" on the back of my neck. At first, I didn't know what she was talking about because I didn't have a sore. What sore??? Then, she put her finger on my back and ran it along the scar that is a few inches long, "This," she said, "'s a BIG sore."

My heart dropped. Oh well. I had to explain that it's not a sore, it's a scar, and it doesn't hurt anymore. We talked about the difference between a sore and a scar. As for hurting, at least the incision itself doesn't hurt, so I didn't fib. We didn't exactly get into internal hardware, she is still technically five years old...hardy har har. Anyway, upon her discovery of my scar, she raised her shoulders to her ears and said, "It looks like it hurts so bad!" Actually, I was the one who felt bad for HER. Needless to say, I was shocked that she paid close attention to such things, and I did not want her being caught off guard again. My sister and I discussed how to handle it...knowing she'd not understand the terminology used by the doctor and since she'd learned about scars, we knew it would seem like an ordinary trip to the doctor's office. And, that's what it seemed like to her, regular trip to the doctor.

For me, it wasn't so ordinary. However, I am moving along in life. With the support of loving family and friends, I am always ready to bounce back from the next stumble. Watching the Olympics lately has given me such inspiration...those athletes have bodies that are beyond comprehension for most people, whether you have health issues or not. Yet, many of those athletes overcome major hurdles and injuries and life's obstacles. Behind every person with a medal hanging around their neck, there is a life-story waiting to unfold, everyone has a story. Yesterday becomes a life-story.

And each person has those special people who have loved and supported them all the way through, good times and bad.

In spite of my own hurdles, although not Olympic in size, I keep going. Some days, I feel as if it is an Olympic feat for me to simply put one foot in front of the other; other days I can almost run with the wind, yet I am always thankful for each and every step along this journey.

1 comment:

  1. I pray that the tests go well with no suprises. I also have lots of stomach issues and nausea, in fact today I have been miserable. My many colonoscopies have always been approached with caution by my doctor too. but I've never had a bad outcome as far as injury from the "camera"! (I always imagine the two cameras meeting in the middle and high 5-ing each other) I'm glad that the doctor is preparing you for every possible problem, it's better to know the risks before hand. The last time I had to drink the "Magic potion" to clean me out, it really wasn't that bad. It was worse years ago, you had to drink so much. I had pills and a yummy drink that didn't cause a lot of cramping. Just make sure you keep some Gatorade at your side and drink plently of it while you are getting cleaned out. You don't want to dehydrate yourself. Keep us posted!


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