My Journey started over 17 years ago when I got pregnant with our 1st child, Tyler. I had severe heartburn and regurgitation throughout all three of my pregnancies which unfortunately never improved after I gave birth. With every pregnancy, my symptoms got worse and throughout my last 2 pregnancies I was so sick that along with taking PPI’s for heartburn I had to be put on Zofran for nausea and vomiting and was even put on bed rest for the last few months of my pregnancies. After having my 3rd child, Rachel, in 2008 life got busy and we focused on our family and raising our three beautiful children. I continued having severe heartburn and regurgitation but simply relied on PPI medications to try and reduce the symptoms although it rarely helped. Our middle child, Abbie unfortunately had some health issues of her own that we were dealing with, so I temporarily pushed aside my own health problems to focus on her in helping together better along with also focusing on raising our young family of 5. After years of hospital admissions, tests, procedures, and tracking/journaling things, Abbie was finally diagnosed with CVS (cyclical vomiting syndrome) which we were finally able to manage through help from her GI team, medications and learning what the triggers were. I’m happy to say that currently she is healthy and taking control of her CVS.
As years went by and our kids continued to grow, & life only got busier as all three were involved in traveling soccer and both the girls were in competitive dance. With that being said, I continued to focus on raising our kids and enjoyed being involved in all their sports and activities. I did not completely brush my own health issues aside, as I continued to have occasional appointments w/my G.I. specialists where I had previously been diagnosed with severe Gerd.
Jumping ahead to 2017 ~ I got sick in September and ended up needing to have my appendix removed. Following my surgery to remove my appendix I decided it was time to move forward with my GI- GERD/Acid Reflux problems and went ahead w/having my 1st Nissan Fundoplication with hiatal hernia surgery (full 360 wrap). Unfortunately, following that surgery I had many complications including dysphasia/swallowing/motility issues as well as esophageal spasms. I also got nauseous & regurgitated often which lead to all my GERD symptoms returning and caused my wrap to slip, pushing my stomach up into my esophagus. I had many follow ups with my surgeon & my GI specialists as well was referred to Rochester Mayo (in my home state of MN) because my case was complicated. I had several appointments, tests, labs, and procedures but my GI symptoms continued to worsen. Needless to say after trying several other options to avoid another surgery, there was no choice left, but to move forward to have the redo Nissan Fundoplication with hiatal hernia surgery (due to the 1st one failing, the return of GI symptoms & complications). Prior to me having the redo Nissan surgery, I had my 1st gastric emptying study and that is when I was initially diagnosed with Gastroparesis (delay of emptying of the stomach). At that point my Gastroparesis was mild to the point where I did not need to be on medication for it.
Following my redo Nissan surgery in December 2018 (where they converted my wrap from a full to a partial to help w/swallowing problems), my Gastroparesis symptoms flared up and I ended up in the hospital longer than expected. They started me on Reglan along with Zofran & Ativan to help with nausea/vomiting and just 2 months later ordered my 2nd gastric emptying study. By now my wrap from the redo Nissan surgery was already slipping/failing because of all my nausea, reaching and vomiting (which btw, you’re not supposed to be able to throw up after a Nissan) . It was after this GES that showed and confirmed my Gastroparesis had gotten worse and is now more severe.
Unfortunately the Reglan that is supposed to help with Gastroparesis was not working for me and was causing side effects (extreme exhaustion and eye twitching). I had to stop taking the Reglan due to these side effects. Since discontinuing the Reglan, some of my energy level has improved (which being a daycare provider, I highly depend on my energy) however I still get eye twitches off & on daily and continue to vomit and get nauseous. I tire very easily due to the lack of food and nutrients I am able to consume along with getting sick often, however thankfully am able to continue to work (and truly believe the love I have as a daycare provider helps me push through each and every day....could never give that up)!
They do not know the exact cause of my Gastroparesis (More than likely my Vegas nerve was damaged during my redo surgery). I have lost a lot of weight over the years due to my severe GERD /Gastroparesis illnesses and continue to struggle to maintain or gain weight. I have had to change my eating habits drastically and have been on a liquid/soft diet for over a year. I now am forced to live on a very specific diet plan and rely on Ensure to help give my body the much needed nutrients that are depleted due to my Gastroparesis.
This brings me to where I am at today. Since Reglan does not work for me and is no longer an option we are forced to continue with more testing and GI appointments in search for other medications to try and help with these awful symptoms. The suggestion of needing a feeding tube has been brought to my attention a few times and although I am trying my very best to avoid that route, if that is my next option after trying a few more meds, than I am all for it! I will do whatever is needed so I can get better to be here for my family and friends and to continue to watch my kids grow. Through all of this I somehow remain positive and hopeful. I have my amazing support system, friends and family to thank for this as they have been and are my rock!
I struggle with finding hope and a cure for this awful disease. I do my best to walk & get light exercise everyday when I'm not feeling sick. And even though I have had to adjust my lifestyle, I still enjoy spending time with my family, children, & friends.
I thank God everyday that I am still here as I continue this journey searching for a cure & fighting to kick this disease.
I shared my story (http://gpawarenessfund.com/index.html) a while back to help spread the awareness of Gastroparesis which currently doesn’t have a cure. A lot has occurred since I initially wrote this blog. I am now currently on a G/J feeding tube which did not improve symptoms like we hoped. I actually went backwards and started losing weight drastically and my potassium levels kept dropping which caused me to be in and out of the hospital. After trying several different feeding tube formulas and having continued weight loss (Im 5’9” and got as low as 92 lbs) it was decided for me to get a PICC line and be on TPN. Placing a Picc line along with a new feeding tube formula has been somewhat beneficial as I’ve gained a few pounds. I still have a long road ahead of me, but am trying to remain optimistic. I have not been able to work since the middle of November and had surgery the beginning of January where they placed a gastric stimulator to help with the nausea and vomiting. Since my surgery, I am not seeing many improvements, but there is still room to fix/change the settings of my pacemaker. I have a nurse that comes to my home every week to check my vitals and draw labs. I also have several doctor appointments each week and am on a lot of medications. I don’t know when or if I will be able to return to my job as a daycare provider. This not only breaks my heart, but causes a lot of financial stress since we have continued medical bills along with all our normal monthly bills and now only have one income coming in. I pray that one day the gastric pacemaker will start working for me and will allow me to have a better quality of life again. The outpouring amount of support we continue to receive is what helps me to remain positive.