Jennifer's Story of Hope

Jennifer’s Story of Hope

Written By: jennifer

Hi my name is Jennifer I am 45 years old.  I have had stomach issues since my teenage years, starting out with what doctors said was Colitis.  I always had either diarrhea or constipation, and the doctors also thought I had IBS.  In 2008, the problems were just intensifying!  The doctors believed my Gallbladder was causing my issues so they removed it.  After the surgery, it just went downhill.  The Surgeon that removed my gallbladder knew there was something else going on and he was worried but said I had to go to a GI specialist. There was nothing more he could do for me. 

 

I found a GI specialist and when I walked into his office, he looked at all of my records and without doing any tests told me I had IBS.  He gave me Reglan and sent me home.  When I let him know it was getting worse and medication wasn’t working, he basically told me it was all in my head and nothing more could be done.  That was in 2009, so I was done with doctors.   I was beginning to believe it was in my head.  I went the next few years dealing with the flare-ups and the ups and downs, and it was hell! 

 

Then in 2011, I received the worst news that anyone could get.   I had a very rare cancer that only one in a million people get ( dermatofibrosarcoma protuberans).  The only way to treat this is with MOHs surgery.  They removed quite a big section out of my shoulder and were able to get clear margins.  I will be cancer free for two years in September of this year.  Yea!  Needless to say,  the healing was excruciating and my stomach issues were put on the back burner. 

 

In November of 2012, I had a flare up that would not go away and it also came with new symptoms (extremely nauseated, lost weight quickly, etc.).  I went to my family doctor who sent me for a EGD.  It came back normal but the doctor felt he needed to do one more test which was the Gastric emptying test. I thank God he ran that test because that's when I finally got diagnosed with GP (not a good thing but at least I knew it wasn't in my head, I was not CRAZY). 

 

I am a small person to begin with weighing at around 100 pounds and 5 foot tall.  At this point I was at 92 pounds.  After being diagnosed, I found a good GI doctor who put me on Reglan again.  Of course it didn’t work.  He told me there was nothing more he could do for me and recommended that I stick to a strict diet. 

 

At this point, I had been on just a liquid diet due to the pain and extreme nausea and I was getting weaker and weaker.  He told me that I was not a candidate for a feeding tube because I had not lost enough weight.  WOW!  I couldn’t believe that.

 

Within two weeks I was declining quickly, and becoming more and more malnourished.  I was very weak and I lost more weight until I was down to 87 pounds.  I called the doctor and that day.  He saw me and set me up with an appointment the following week for a feeding tube. 

 

The day I went in to get the feeding tube, it had been one week since I had seen the doctor. I found that I had lost more weight - four more pounds.  I have the feeding tube now and I know it will be very helpful.  It doesn't seem that way right now but I know it will. 

 

I have to fight to live. I mean I fought cancer and I beat it!  Now, I know that this disease will not go away as there is no cure but I’m a fighter!  I need to fight for the ones I love and I need to show this disease that it’s not going to take me down that easily!

 

Some days I break down and just sob, though. This illness has taken away so much from me in such a short amount of time.  But, it can't take my four wonderful daughters, my extended family, my grand kids, and my best friend of all my soul mate (my husband) away.  They are my life!   Bless their hearts!

 

This has taken such a toll on them watching me go through what we all go through with Gastroparesis. No matter how hard it gets, please know God is there with you and he will carry you when it gets too hard to walk.  Please know that there are wonderful support groups that will walk every step with you! All of us GPers are family! May God bless each and every one of you!