G-PACT provides many opportunities for patients and caregivers to receive online support. Most require a simple approval process.
G-PACT on Inspire: a community of support groups for a variety of conditions all in one location. www.inspire.com/groups/g-pact-gastroparesis-and-cip/
Yahoo: largest online support group for GP and CIP on the web with over 3,400 members. https://groups.yahoo.com/neo/groups/gastroparesis/info
G-PACT on Twitter: Follow us at @4GPACT.
Facebook: There are a number of group options on Facebook:
The main fan page is to be utilized mostly for public relations updates such as new medication or treatment options, publicizing G-PACT events, sharing motivational messages and sharing information on webinars and other educational events. This page is not for patient postings or questions. www.facebook.com/GPACT
G-PACT: Coping with Gastroparesis and Intestinal Pseudo-Obstruction– this is a general group for all issues related to life with GP. CIP, and CI (aka: DTP- Digestive Tract Paralysis). www.facebook.com/groups/GPACT
The Gutsy Teen Lounge: Very active, engaging group for teens/young adults with DTP. www.facebook.com/groups/gutsyteenlounge
G-PACT: Kid Bits: Group for parents or caregivers of kids with DTP. www.facebook.com/groups/kidbits
G-PACT: Gastroparesis and Pregnancy: Group for those suffering from digestive tract issues who are currently pregnant or considering pregnancy. We also welcome those who have been pregnant while suffering from DTP. https://www.facebook.com/groups/532377730222400/
G-PACT Send a Smile: Group for those who want to bring a smile to others by sending cards and/or small gifts to patients experiencing a particularly difficult time. https://www.facebook.com/groups/496123433854553/?fref=nf
G-PACT Supply Depot: This group allows members to post medical supplies they have and supplies they need so patients can swap when in need. Shipping arrangements and payment are made directly between donor and recipient. Items requiring a prescription, or items that are not legal, may not be posted. Participants who receive supplies and default on payment may be banned from the group. www.facebook.com/groups/gpactsupplydepot
G-PACT: Prayer chain: This group is dedicated to people who like to pray and believe in the power of prayer. It is open to praying for suffering DTPers or ANY issue weighing heavily in the minds and souls of DTPers that they would like to share with others. Prayer requests may be posted. www.facebook.com/groups/DTPrayers
DTP Sharing and Solicitation Group: This group is where people can post their solicitation requests, since all other groups have a non-solicitation policy. https://www.facebook.com/groups/690069241017050/
Group for our Canadian friends to connect with each other. www.facebook.com/groups/GPACTCanada
G-PACT Down Under:
Group for people who live in Australia or New Zealand to connect. www.facebook.com/groups/GPACTDownUnder
Group for G-PACT members from the UK to connect and share information. https://www.facebook.com/groups/GPACTUK/
PAL Bios and Hours
Our PALs are also ill. If your call is not answered, please leave a message and someone will return the call as soon as they are able.
Meet Carol Pasinkoff
Available, Eastern Time:
I have had severe idiopathic gastroparesis since March 2004. It has been a very long, arduous journey but I am so grateful for how far I have come. The beginning was so scary, especially when I would go to doctors and they couldn’t tell me why I was constantly throwing up for months. It was attributed to stress and I knew this was not true. There was something very wrong with me. As soon as I would take a few bites of food, I would fill up immediately. I would start belching, my abdomen would become rock hard and I became very nauseous. Eventually I threw up the little I had eaten. I lost 40 pounds very quickly and was becoming weaker and weaker and more frustrated. It was even suggested that it was “all in my head” and that I should see a psychiatrist! Finally I found a doctor who knew immediately what I had and he saved my life!
But it didn’t happen overnight. Many medications and treatment options were tried. I was being kept alive by TPN but my symptoms just wouldn’t go away. I became more and more isolated from life and became more and more depressed. But with my continued faith in God and the undying support of my husband and 3 children I remained strong. I fought many line infections and constant surgeries to have PICC lines and then Hickman Catheters put in. My doctor referred me to a top expert in gastroparesis at Temple University Hospital in Philadelphia, PA and he tried some other medications. Still, there was no improvement. I waited patiently and prayed hard and then finally my insurance company approved me for the gastric electric stimulator. I was so excited! Even though the doctors only gave me a 30% chance of it working for me, I remained positive. After about a year and many adjustments to the settings I finally stopped my constant vomiting! Unfortunately all my other symptoms remained. By this time my venous access was almost nil so it was suggested that I have a j-tube put in for enterral feedings and a g-tube for decompression. This was the best decision I could have made! I have gotten my life back! Although I still have many persistent symptoms, especially unrelenting nausea, I take numerous meds daily and on my good days I do almost everything except eat! Now I am strong and active and now I’m trying to give back. Feel free to call me for support. I have been there and have not forgotten all the emotions that you feel when you have gastroparesis.
Meet Cindy Tessmer
Available, Central Time:
I have severe gastroparesis, beginning with constant vomiting and nausea. I had many tests done before finally being diagnosed. I went through the gastric emptying studies, a pill cam, and finally did the Smart Pill which actually provided the diagnosis. I ended up in the hospital dehydrated many times, with pain that was uncontrollable.
In November of 2008, I had the gastric electric stimulator placed at Abbott Northwestern Hospital in Minneapolis, Minnesota. I have had it moved several times due to problems with placement. It was moved four times and I now like where it has been placed. I have been through several adjustments over two years until I finally got the vomiting to the point where I rarely vomit. However, I still get symptoms of nausea, bloating, early satiety and pain. The pacer does not control the pain, but I have learned to live with it.
Since I received my pacer, my symptoms have improved. I still have bad days but I have many more good days than bad. Right now, I have been keeping my weight pretty stable. I eat maybe once or twice a day with snacks throughout the day. I have not had to have any tubes placed yet, about which I am excited. Venous access, if needed, is little to nothing but we are keeping a close watch on it. I do take medications for nausea such as Zofran and Anzemet.
Meet Jennifer Southall
Available, Pacific Time:
My daughter was born with CIP and gastroparesis. She just turns eight in May 2015, and is on several treatments. Diagnosis was not made for CIP until age 3. She has undergone almost every GI procedure and test and has been tube fed. She spent months in the hospital and has an array of other medical issues. She was diagnosed with sleep apnea, due to reflux, failure to thrive, global development delay, food allergies, sensory processing disorder, adenoids removed twice, tubes in her ears three times, and the list goes on and on.
She is currently in feeding therapy, speech therapy, occupational therapy, and physical therapy. Her development is also delayed, which doctors guess is from these medical problems.
She takes Octreotide injections twice daily, which have improved her symptoms. She also takes Prevacid, three laxatives, Erythomycin, Periactin, and some nutritional supplements. All other treatments have failed thus far. She still has days where she cannot keep food down and she can only eat certain foods, although it is much improved. Her weight is 31 pounds and she is 39 inches tall, which is the highest percentile she has ever been in either weight or height.
Please call me for any pediatric questions on CIP or gastroparesis!