I’m Still Here GP

I am Cristin McCraw. I’m 44 years old. I’m a survivor of idiopathic Gastroparesis. I was diagnosed in 2010, and had no idea what a wild ride I was in for! I began having symptoms in 2009, and my PCP Alison H. Nguyen, M.D. , actually came up with the idea of me possibly having idiopathic GP. These symptoms included nausea, vomiting, severe weight loss, malnutrition, abdominal pain, bloating, severe constipation, night sweats, fainting, fatigue, trouble concentrating, and so forth. We can all go on for hours about our symptoms.

At that time, I was working on E2 ICU at Stanford Hospital as an RN. This was my dream job of course. 

As nurses, we tend to think what’s going on with us isn’t as bad as our ICU or trauma patients. I would simply go vomit when I needed to, and managed to hide my deteriorating health. That is until, April 28, 2010, when I was lovingly asked to take medical leave, or I was going to die in the ICU I was working in. My coworkers and bosses were amazingly supportive during all of this. They held my job for six months, and fortunately my STD and LTD and life insurance, was a job benefit. I began to feel like I was losing all the important things in life. I was put on this earth to be a nurse, not a patient!

I kept telling myself, “You can do anything, suck it up”. I was worked up by every specialist known to man. I was judged by so many doctors, and pushed off to the side, like a kid does with a salad they don’t want to eat.When Stanford’s GI specialists couldn’t figure out what was wrong, I was scared for the first time. I was blessed to be close to SF, CA, and was diagnosed and treated by Dr. William Snape, a neurogastroenterologist, at CPMC Hospital and Clinics. When I finally had the diagnosis, then I thought it would get easier. It did not! I had to wait eighth months for my insurance to approve my first gastric stimulator. I went through all of the other treatments for GP, but none worked. I was part of a GP study at CPMC, but I decompensated faster than they thought. I had regular visit with the GI team at CPMC, but they never seemed to believe the severity of my situation when I called them. I show up in there office on my next scheduled visit, and they promptly admitted me to CPMC Hospital. I was also dropped from the medical study because the doctors didn’t think I was going to live. I was so angry, because they didn’t listen or believe all the messages I sent them about how sick I was. I weighed 83 lbs, and I’m 5 feet, 4 inches.

They started a central line for TPN nutrition while waiting for the approval for the stimulator. I have vague memories of this time. Both of my parents are still haunted by how sick and emaciated I was when they walked into my hospital room. Fast forward to 2011, and I have my gastric stimulator. Four months later I was taken off of TPN, and had a J-Tube placed for nutritional feedings. Remember, I’ve not been able to eat in over a year now, and I’m really missing the social aspect of eating. I would go out to eat with my family, and just drool like a dog. The tube feedings failed, and I became allergic to the tube material. The sutures kept popping off, and my surgeon would just suture it up again with NO local numbing at all. I went through that three times before I went to my wonderful PCP, Alison H. Nguyen, M.D. She used local anesthetic before she sutured. It was much more humane! I had mechanical cellulitis and had to eventually have the tube removed.

By this point, my husband, his son, and my son were very scared. I consulted with hospice because I felt such guilt about not having the physical capabilities to do things with my family. I will never forget that distinct feeling of losing EVERYTHING! On Christmas Eve 2011, I decided to discontinue all treatment and go on hospice care. It was heartbreaking to tell my family this on such a wonderful Holiday. I had started believing what my husband was telling me, “You’re stealing our lives”. Once again my parents helped me find the strength to fight. Not to my surprise, my husband left, and I haven’t been allowed any contact with my stepson, who I was going to adopt.

I was blessed to have a fabulous psychiatrist and therapist, who also got me through the toughest times. Who wouldn’t be depressed and anxious with GP? It became impossible for me to take care of my son and myself. We left CA, moved to CO, April 2012, to live with my parents. I had to get another central line for TPN again. I was bed ridden for about a year. I consulted with hospice again, but my parents, and my son were all instrumental in my decision to continue treatment.
As the years went by, I was able to wean off of TPN, and was only using my central line for hydration and electrolyte therapy. Mind you, that I was literally telling my doctors what to do. They had no experience with GP in Colorado. I knew my doctors both professionally and as a patient. That made it so much easier. Home health didn’t have to visit often, and my doctors would really listen to me. 

Gradually, I found the specialists that I needed in CO. I also discovered the GP support groups, and I began my journey of supporting and advocating for GP. I found so much support and love there. I’m happy to report that as of October 2015, I am
central line free. Currently, I’m on my third gastric stimulator, that was placed on December 18, 2017. This seems to be the best therapy for treatment in my case. I still battle daily to survive. I cant eat much and most of my symptoms are still there, just not as severe. My medications help too. I take phenergan and zofran for nausea and vomiting. I take nexium for the reflux, and Oxycontin 20 mg extended relief for the pain. I’m also on Zoloft for depression, and Klonopin for anxiety. Medical
Marijuana helps the most with nausea and appetite. I’m hypothyroid too, but it’s controlled with synthroid.

They have not found any treatment forms to help with the chronic pseudo impactions of the small bowel. Today, I still struggle with my symptoms, and the good days are few and far between. I did lose myself for quite some time. After everything was stripped away from the life I had planned, I found myself again. I started learning about all the amazing things I can do. I can still help people. I can still be a good Mama. I can be a great friend. I can become a GP advocate.
I can enjoy my Church family, and grow even closer to God! I’ve adapted to the changes, and embrace them now. I am me, and I’m still here!!!!!!

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