Jul 14, 2019 Latest post:
Aug 11, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. As many of you know Stacy will be due to have a major surgery on July 24 2019. I will use this as a way to be in contact with family and friends during her journey. Let’s all hope this helps her feel better.
Stacy here! Hi y’all! Thanks for taking the time to stop by this page that Jess has set up. With having friends and family all over the country- I think this will make updating a little less stressful for Jess once I’m in surgery.
To bring everyone up to speed on what is going on this is the semi abbreviated version.
When I was about 18 I was diagnosed with intestinal malrotation. This was discovered after having stomach issues for years. I was told this condition was rare for adults to survive with as it’s commonly discovered in infancy. My symptoms were mainly treated as IBS and I went on with my life.
Fast forward to 2018. I started a weight loss program as my health was at total rock bottom and decided I would pursue Bariatric surgery. I told my surgeon about my pre existing condition and he assured me “no problem”. WRONG. When he went in to do the surgery he discovered my intestines were a total tangled mess deeming it unsafe to continue with a planned roux en y bypass. Turns out- he converted to a different procedure that cut bands that were cutting off the blood flow in my intestines, and removed scar tissue from a lifetime of my twisting guts. August 20th he went back in and performed a vertical sleeve gastrectomy.
Almost immediately I knew something was not normal about how I was feeling. My nausea was so intense the hospital wasn’t able to do the “leak test” before discharging me and I was released with the hope that I would eventually enjoy the journey of losing weight. Wrong again.
It wasn’t long before I started experiencing some complications. Since then- I have constant pain in my stomach that is sometimes completely debilitating. I REALLY struggle to get my fluids in- goal is 64 oz and most days I’m lucky to get down 15 oz and hold it down. The biggest issue- has been a major change in bowel habits. Sorry this might be tmi. At first it was thought to be simple constipation but as time went on I learned it was more serious.
After NUMEROUS hospital visits, days spent getting IV fluids, being poked, prodded and interrogated it was determined my colon has stopped working. I take medication that is supposed to force my abdominal muscles to contract and hopefully help “move things along”. The meds are not effective and just cause a lot of pain. After almost a year of spending hours at a time in the bathroom, not sleeping because of pain, having a foggy brain from my constant low blood sugars and dehydration, needing an iron transfusion and the list goes on... I turned to social media to see if I could find ANYTHING or anyone who has experienced this.
Because of Instagram- I discovered a tribe of others who have very similar stories. We call ourselves malrowarriors! Because of this tribe - I found Dr. Kareem at the Cleveland clinic. Because of Dr. Kareem I will be having an innovative, major complicated surgery to hopefully save my intestines and prevent me from having further complications.
I will have a team of surgeons who will be cutting me open and taking out my entire intestinal system. It is then that they will determine just how much will need to be removed. After Monday we will know more about the details and we will share as we go. I am glad I am able to share my story. I want other people to know that it is OKAY to question your provider and advocate for yourself. I also want to raise awareness about intestinal malrotation in adults. I want providers to realize that just because they are not familiar with a persons condition doesn’t mean they should just ignore it.
I’m so grateful and blessed for all of my friends and family who have offered endless support and love💕