Wednesday, July 26, 2017

day +204 post hsct update

Remember when I said, "lets hope it isn't gastroparesis?" Well, turns out, it's gastropareis. Bummer. Unfortunately, the digestive issues I was hoping would chalk up to some sort of virus was definitely just a delayed gastric emptying flare, aka gastroparesis. This has lead my team to believe that my systemic sclerosis may once again be active, which would garner a diagnosis of relapse post HSCT. However, I am still holding out hope this is just a bump in recovery since I am so young post HSCT.


  • My gastric emptying study shows moderately delayed emptying. The nerve that tells the soft muscles to move, called peristalsis, is damaged - so it's not sending the correct signal to move food through to the intestines from my stomach. This causes my stomach to hold onto food longer than it should, equaling serve cramping, distention, bloating, vomiting, and nausea. Basically, the food stays undigested in my body until I eject it. Gross. Unfortunately, this requires the use of a feeding tube that bypasses the stomach so I can get proper nutrition. 
  • I saw my GI physician post GES, who wasn't fabulously optimistic I would get to continue my life without a permanent feeding tube. She schedule a GJ feeding tube surgery for about six weeks out, that way we have some time to trial a few medications. She prescribed a med called Domperidone, which essentially moves the stomach muscles for you; it also blocks the receptor in the brain that controls nausea. The medication isn't FDA approved even though thousands of patients use it for gastroparesis. So while I wait for it to ship from Canada, I am trying out Erythromycin - an antibiotic used to speed up gastric emptying. I take it around the clock, but especially before I try to eat anything. Unfortunately, these drugs are subject to the consumer, which means they may or may not work. So far, I have seen a little improvement from the Erythromycin, but not enough to eat an entire meal. Just a light snack, or drink - both of which have to follow the strict gastoparesis diet of low fat/fiber. I have experienced much less nauseas since starting the meds at least, so thats a win! Unfortunately, that means I am stuck with my NJ tube until surgery placement, or until/if the domperidone works. Urg. Chances are I will need the tube, and the domperidone, but in a perfect world, I would be able to eat and not need the tube! 
  • We also scheduled an appointment with my Pulmonologist, Rheumatologist, and Autonomic Specialist. Since my DLCO decreased by 22%. I will be repeating a PFT here with my Pulm, and following up to diagnosis whatever this issue may be. My Rheum will probably throw me back on some immunosuppressive treatments to hold off this damn disease until we have a better option, and my Autonomic Specialist can hopefully get my increased Dysautonomia symptoms under control. I'm exhausted mentally, but physically feeling okay!
  • I spoke at the National Scleroderma Conference in Phoenix last weekend. I always enjoy connecting with other patients, and hearing about all the new medical advances! 

I'm going to be taking a short social media break. I just feel I need to focus on other things right now. A little cleanse/detox from the turbulent online world is good for the soul sometimes. It kind of breaks my heart, since I absolutely LOVE connecting with other patients and my readers - but please understand, this is for my mental health. Transitioning back to the world of chronic illness after have such an incredible, trouble free 6 months has been mentally, and physically tasking - but mostly mentally. I will not be answering messages, or comments until further notice. I am so grateful for the love and support I constantly receive, but right now I just need to focus on what's best for my overall health. I may occasional post a quick update, but won't be divulging into replies. I promise I will be back soon! Thank you for your understanding at this time. 

xoxo Chanel


  1. I'm so sorry and you are in my prayers! God bless you!

  2. Total support for you and your choices. i will be praying for you Channel.

  3. You deserve a break. It would be selfish of us to ask any more of you. You take as long as you need. <3

  4. Just FYI: I used to be on Domperidone because my stomach empties 25% too slowly. I got it from Canada, also. However, I had to stop because the FDA found that it caused heart issues. My GI docs told me that they can have their medical license revoked for even WRITING a prescription to get it form another country! You might want to check that out. They have me on a natural product now called Iberogast, which I order from Amazon.

  5. I was able to get my Domperidone made here locally at a compounding pharmacy. No shipping from Canada. I hope your break centers you and brings you peace.

  6. I was able to get my Domperidone made here locally at a compounding pharmacy. No shipping from Canada. I hope your break centers you and brings you peace.

  7. 🤗🤗🤗🤗 take time for yourself. See you when you return.

  8. Hi Chanel,

    I only discovered you two days ago when I was researching my own health issues which are like having a hang nail about to fall off compared to the hell-hand you've been dealt.

    But I can't stop thinking about you. I hope that doesn't sound creepy. But your story has touched me deeply. I have two sons in their 20s.

    I admire your courage, beauty, strength, wisdom, kindness. You are a gift to the world. A rare gem.

    About your stalker-cyber-bully. Now THAT is sick! And not the good kind of sick. I have no idea how some people operate. I too am a blogger and every once in a while, there's someone who feels it's their duty to bring me down to their low place.

    Please do whatever you need to do.

    xo ~ Laurel

  9. I didn't see your posts until recently, but you are on my mind and in my prayers. Much love, thoughts and prayers.

  10. Hi Chanel
    Here's hoping its not a relapse. Wishing you all the best. You are an inspiration to many but I know that doesnt stop it being a hard battle for you.
    Just had some bad news myself. Thought things were quietening down a bit and then wham the x-ray tells a different story.
    kind regards