Wednesday, January 15, 2014

The Whipple Effect



  As I have stated in previous posts, I have a hereditary disease called Familial Adenomatous Polyposis. This disease is the reason for all of my G.I issues, including my colorectal cancer diagnosis. This past November, when I found myself in the I.C.U, it was due to a complication from a procedure called an E.R.C.P, that I had because I have F.A.P.  I learned two very important things during my stay in the I.C.U.  First, due the excessive amount of polyps I have in my intestinal tract, it was unknown exactly how many more "E.R.C.P's" I would need to remove them all, though one doctor guessed "twelve." Second, there was an alternative, instead of having an E.R.C.P every three months, I could have a procedure called, "The Whipple," where, all of my polyps would be removed during one surgical procedure.  So, there are my choices, either "twelve" E.R.C.P procedures, or one surgery to remove all of my polyps at once, seems to be an easy choice, that is until I delved into what exactly the "Whipple Procedure" would involve. 

  "The Whipple" procedure is a complex surgery that is known mostly for its connection with patients who have pancreatic cancer, but is also a viable alternative for F.A.P patients who have excessive amounts of polyps. In my particular case, my surgery would entail having six inches of my duodenum removed, as well as my gallbladder, and 15% of my pancreas, and if all goes as planned I would have my drainage tubes pulled after three days, spend a total of six to eight days in the hospital, and be discharged with instructions of three months home rest. If I have any complications, specifically the most common, called a "fistula" things would become more complicated. I would still be discharged from the hospital after six to eight days, but would be sent home with a home care nurse, as I would still have the drainage tubes, as well as a T.P.N port where I would receive my nutrients since I wouldn't be able to eat, from anywhere between three to six weeks, or until I "drained" all the excess fluids. So, in a nutshell my choices are having multiple "E.R.C.P's," and possibly end up back in the I.C.U, or my fourth "major" abdominal surgery.

  After a lot of thought, and discussions with my primary, the surgeon who performed my last surgery, appointments with multiple G.I doctors, as well as the Executive Director of Georgetown Transplant Institute Chief, Liver Transplantation Professor of Surgery, I chose "The Whipple."  This is possibly the biggest decision I have ever made, and I am 100% confident in the people who helped me make this decision, as well as the surgeon who will be performing the surgery, but because this is the biggest decision I have ever made, this is also the most anxious, nervous, scared, and afraid I have ever been prior to a surgery. I know that I shouldn't question myself, especially since I made this decision with the help of great doctors whom I trust with my life, and all of whom hold all the credentials a patient could ask for, still I am worried about possible complications. I have grown jaded, I feel as if I am prone to any complication that is possible following a surgery; when I had my end ileostomy surgery in August, I was told I would be in the hospital two to four days, and due to complications I spent two weeks at Washington Hospital Center. On October 29th, I had an E.R.C.P, and due to complications, less than a week later I found myself in the I.C.U, diagnosed with "acute internal bleeding." So, as far as I'm concerned, my apprehension is more than justified.

  Once again I find myself  staring at my computer writing yet another blog post about an impending surgery.  The feelings I am having while writing this are eerily similar to how I felt six months ago, when I wrote my very first blog entry. I remember writing my first blog, and saying, "I was scared, make that really scared," and looking back I'm afraid I used the word "scared" too loosely, because now I am really scared, make that frightened! I've been walking around this last week feeling as If I could vomit at any moment with all this nervous energy running through me.  All I can think of is this surgery, and the more I try not to think about it, the more I do. My anxiety level rises a little more with each passing day, which is doing wonders for my OCD, as I am washing my hands to the bone. I have lost all self control, I feel as if I was just diagnosed with panic disorder, and OCD yesterday.  Regressed is what I have done, as I once viewed myself, as a strong person, both mind, and body, I have now turned back to the scared little boy, who at eighteen clung to his grandparents and wouldn't let go, until they told him "everything was going to be okay." Seventeen years later, I feel as if my life has come full circle, the same disease which allows me to say, "I was diagnosed with cancer at eighteen," is giving me the opportunity to call myself a "Whipple Warrior."


  Bottom Line: Tomorrow, January 16th, 8:00 A.M, I will be going under the knife once again, and hopefully for the last time. 


  Lastly: We all have our "crosses to bear," all which "weigh" the same, only us as individuals know exactly how hard it is to carry these "crosses" on a daily basis.  I wonder what "cross" it is that you carry, what are your daily struggles and how do you deal with them?  

  Let me know by e-mailing me, or if you feel comfortable leave a comment on this page.

 kristoferadam78@gmail.com








9 comments:

  1. Good luck tomorrow! I just found your blog tonight. Thank you for sharing your story, it takes a lot of courage and strength to share.

    -Alyssa

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  2. Kristofer, I hate that you have gone and going through so much. Becoming a Whipple Warrior is a title all in itself. The majority of the world, trust me... has no clue...
    I just got out the hospital due to pancreatitis and constipation and about to have more tests soon. My duct to pancreas is dilated and backed up still. :-( Not sure if I will get a stent or the other option is remove the rest of the tail and spleen. I had an exploratory turned into the Whipple due to 2 cysts in the head and then they found I tumor in the tail which apparently was the cause of my uncontrollable sugar issues. Said I was the first ever to have such an issue with sugars to find a tumor like that. Praise God only pre cancerous. So, no chemo or radiation needed. My Whipple was July 22, 2013, almost 6 months ago. sugars are still under control. YAY me!!! LOL Now, if I could get the pancreas to quit backing up and not cause pancreatitis.
    Oh, not sure if you know. Lots after the Whipple need Digestive Enzymes like CREON. Just an FYI. Well, God Bless and take care.

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    1. I forgot to mention, I'm Kathy on The Whipple Surgery Survivor Group.

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  3. Kristofer, I am the founder of the Facebook group: Whipple Surgery Survivor Group and the Whipple Warriors. Please use us for support, questions and anything else to help you get through the "Granddaddy" of all surgeries. You will have over 1,500 fellow Whipple Warriors with you the whole time! We are global and the largest gathering of Whipple patients in the world so someone is available 24/7 somewhere in the world. Our motto is: You are NOT alone!

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  4. Hey Kristofer. Kathy from The Whipple Surgery Survivor Group. hope your surgery went well for you. Let us know how you are doing?? Praying for a great report. NEGU!!!

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  5. Hope you are dong well Kristopher!!! I know there are others that have had surgery for FAP as well as you. We all have had various procedures with The Whipple in common... Hope this finds you on the mend. :-)..

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  6. You are a powerful writer. Your words here have had a powerful effect on me. I hope you continue to share your journey always.

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