Monday, December 8, 2008

In truth

My sister has Crohn's disease.

It's one of the defining statements of my life. It is one of the reasons I am who I am, and why I do what I do. My sister has been sick since we were teenagers. I mean really, truly and deathly ill. My earliest memories of her illness include her standing next to my locker looking as pale as a ghost. They thought she had lymphoma, cancer. Turns out she had Crohn's.

It became clear to me during high school that my family needed an ambassador, a translator of medical jargon, someone who knew all the options and had the patient's best interest at heart. School came very easy to me, I have a photographic memory. I was the natural choice. Right before my wedding my sister's intestines perforated and she almost died of sepsis in the local hospital. There was no time to waste.

I've had a lot of schooling, but medicine still is by far the most interesting subject to me. I excelled in internal medicine (top of my class) from the start of physician assistant school, and I only got better when placed up against medical students at the local level one trauma center in Savannah. I remember once I had graduated from PA school, taken my boards and was looking for my first job. I attended a CME event at the local hospital. I enthusiastically told the local Gastroenterologist and his PA how much I wanted to work in GI. Ironically it turns out even though they didn't say much during their meeting with me, their office manager called me for a job interview the next day. Within a week I had my first job, in Gastroenterology (GI), with the sickest patients in the hospital. I jumped right into the fire. I had wasted nearly 7 years in school and I had a lot to learn about Crohn's.

I learned from the best, 6 different GI doctors. All had a different approach, but I integrated the best of all of them. I completed my master's degree in Gastroenterology, my thesis was current approaches to Crohn's disease. I am the first person in my family to have a master's degree. I sucked up everything those guys taught me like a sponge. And not a moment too soon. My sister landed back in the hospital again, this time with a bowel to bladder fistula (a tunnel from the intestines to either organs or the outside skin that stool empties through). That was clearly not good. The local small town GI doctor had already placed the consult to the surgeon by the time I arrived at the hospital from out of town. And for the first time I was able to fulfill that role for my family. I stood there and argued with him that she needed a consult to Duke University Medical Center, not more surgery. In the end he agreed. And at DUMC she received aggressive re-induction with Remicade, and titrating with 6 MP while monitoring the metabolites. The fistulas closed with medical management, the best the country has to offer.

But my sister, and my family live in a small town. It isn't feasible to run to DUMC for everything. She was managed for years on IV infusions of Remicade every 8 weeks. Amazingly, my sister holds a job. She always saves her sick time, just in case. She is sicker than most of the patients with Crohn's who are on disability. But we weren't raised to give up. It's not what we do. While people don't die from Crohn's, it is not uncommon for them to die from the complications of Crohn's (bleeding, anemia, sepsis, bowel perforation.)

In the past few weeks my sister has gotten worse. More pain, more nausea. It seemed like a partial small bowel obstruction, probably from adhesions from her first surgery. She had an EGD and Colonoscopy from the local scope monkey (in case you are wondering that is a derogatory term for a GI doctor only interested in making money from procedures). She was then scheduled for a capsule endoscopy, where you swallow a camera and it takes pictures of the intestines that aren't accessible by scope. Seemed like a good idea, only my sister never received an imaging test first. I didn't realize that she hadn't had that, I was hearing all of this second hand from both my sister and my parents. Where we are now is that the camera is stuck in a stricture/fistula in her intestine. This wouldn't be a problem except that the stomach acid erodes the plastic coating around the camera, exposing the the battery. The battery then erodes and causes caustic damage to the bowel until it ruptures. I've read that the capsule can be stable anywhere from a few weeks to a month. My sister's local GI doctor has referred her back to DUMC, because this has gotten "complicated." I think you can see how I feel about how this has been handled from my backhanded comments in this paragraph. i know that hind-sight is 20/20, but I really wish an imaging study had been done first.

I told my parents my sister would need surgery to remove the retained camera and they freaked. Totally shot the messenger. It's so hard that the most important patient I will ever have can not every legally or ethically be my actual patient. I only serve as a second opinion, an advisor, an advocate. And I'm still her sister and I'm scared for her. But I never let my family see that or hear that in my voice. Bowel resection is big surgery, with numerous complications, all of which I get to torture myself with until her outcome is known. So I ask for your prayers that her surgery goes well. Due to all her problems and medications, she is unable to have children of her own. But she loves J to pieces:

29 comments:

Helsbells said...

You and your family are in my thoughts.

Ally said...

Totally thinking of you and yours. These are obviously large obstacles. I wish you the very best outcome.

lauren said...

WOW! You are an INCREDIBLE woman, just like your sister. She has worked through what most people wouldn't and your drive to learn and take care of her, wow!!! Are you thinking about becoming a doctor?

***hugs, prayer, thoughts***

Jen Martakis said...

Oh Danielle. I am praying for her and for you. Please keep us updated. When is surgery?

Susan Beth said...

Major prayers going up for your sister and for a peace for you and your parents during the waiting time. I know several people with this disease, and although I have no medical expertise, I have watched it control so many aspects of their lives. Your sister is blessed to have access to your expertise as a back stop while she navigates the often frustrating medical system. Blessings of wisdom and compassion on the docs as they move forward with her best interest at heart.

*Paula* said...

what an amazing story. I can't imagine what life must be like for your sister and you and your family. Hugs and positive thoughts for you all.

Kimber-Leigh said...

oh danielle...my heart hurts for you. i will be praying...and i'm thankful that you are able to "translate" for your family, i'm sure that that is a huge blessing for all of you.

happydays525 said...

Danielle, know that we're thinking of your sister here as well as praying for her and your family. I am so sorry to hear about this and I hope that things go well. Please keep us updated...

Michelle Charlotte said...

I'm sorry your sister is suffering. My prayers go out to her. (My mother-in-law and sister-in-law both have this disease; I wish no one had to deal with that kind of pain.)

Your story is very inspiring, though. It's so nice to hear about a real, strong female taking charge. It's clear that you have a strong will and good heart!

Lisa Dickinson said...

thinking of you girly!

stephanie howell said...

After I read this post I paused and said a prayer for your sister. And I'll keep praying. xo

Denise said...

You are an amazing sister. Your sister will definitely be in my thoughts and prayers.

Scrapper Mom said...

I will absolutely pray for her, and for your family!

:: gingerkitty :: said...

blessings be with you and your family.
namaste

Stephanie Vetne said...

Lots of prayers for you!!

YourScrapbookStash.com said...

My dad has suffered with this disease since the 70's - before they even knew what it was. he has a great doctor here in CA and he loves to get any and all information on treatment for this disease. For a few years, my dad was on the board for the CCFA (Chrohns and Colitis Foundation of America) because he had finally found a 'cure'.

Not really a cure though, but something that controlled it. It was an experimental drug that he agreed to try through UCI. At the time, it was called 6MP. I'm not sure if they have given it an official name, but he still takes it and hasn't had a flare up in almost 10 years.

Of course, he takes a million other things as well because its still there.

He's had portions of his illium removed (I did a report on it for my anatomy class in HS) and all kinds of treatment through the years and the 6MP is the only thing that can control it.

He's also referred several other people to UCI for this pill and its worked for them. I'm not sure if your sister is a candidate or not, but I thought I would spread the word since that my Dad's goal in life - knowledge.

Good luck!

moonlightgrrl said...

Danielle, I am praying hard for your sister, your family, and for you.

Lisa Dorsey said...

oh Danielle, my heart is breaking for you. You are absolutely amazing and I will be saying a prayer for your sister, you and your whole family.

Anne aka Anniescraps said...

Danielle, I have already said heart felt prayers and will continue to do so. My best friend has Chrohns so this hits home. Take care.

NoraAnne said...

Danielle, I can't imagine what you are going through. Your sister and your family are in my prayers.

Linda said...

Oh my goodness - your sister and your family are definitely in my thoughts and prayers!

About Me. said...

Your sister and your family are in my prayers and we will light a candle for her at Church.
Love and God bless,
Shaun
www.roomswithaview.typepad.com

Penny B. said...

I'm so sorry to hear about your sister. I will keep you all in my thoughts. I think it's an incredible statement that your life path has made...nothing is more important than family.

kristina said...

I will be praying for your sister, you and your family, Danielle. BIG hugs. I think it's so awesome what you are doing for your sister and what you have done with your life because of your sister's illness. More BIG hugs!!

Lulu said...

:( :( :( I am sitting here in tears... My DH suffers from UC, and I don't use the term suffer lightly.. I can't even say I relate though, or feel your pain, because as bad as it can be, things are not that bad here. But that is my worst fear for my DH. I'm sorry... I'm babbling here. Bottom line, you and your sister will be in my prayers. She is blessed to have a loving advocate like you... *hugs*

Vee said...

I am so sorry to hear that your sister is ill D! I am glad she has you as a sister, praying for you and her to have a successful sugery.

Sharon said...

I came here through Stephanie Vetne's blog... I read the whole post about your sister because the word Crohns got my attention! ;) At 45 years old one year ago exactly I was diagnosed (finally) w/ it... continue to bless your family with your knowledge and heart! I will pray also.

Rita said...

Just catching up, and I'm sorry to hear about your sister's illness. Good thoughts and prayers coming your way for a successful surgery!

Latisha said...

I just hopped to your blog from CC. I too have Crohns disease. I actually never heard of it until I was diagnosed. I have had a bowel resection, 3 different sections about 17-19 inches total removed plus my appendix. I had great medical team and wonderful insurance. I hope your sisters surgery will go well, without complications. So glad you are able to help them sort out all the medical lingo. I have come to learn and be my own advocate, sometimes that means arguing with my Drs. I know they are a doctor, but I know my body and what works and what doesn't. big hugs to you!
~latisha