If you would like to share your personal story with GP/CIP or any other gastrointestinal disease, please E-mail me and I will post it for you here. Also check out the VIDEOS that were made to promote DTP awareness by sharing experiences!

*Click the pictures or names to learn more about their personal stories with their digestive disorders and for links to their own blogs*

One of the most inspirational people I have had the pleasure to know. She has been through so much in so little time and she does it all with a smile on her face. While septic and stuck in the hospital, she was more concerned about getting her handmade sock monkeys to other sick kids than she was about herself. She always puts others first. I am so excited that she finally made it out of the hospital after 4 months in the hospital. I love this girl!

She has been through it all. Samantha had a gastric neurostimulator placed but it caused her a lot of problems and ended up having to have it surgically removed. She feeds through a jejunostomy and is able to drain with a gastric tube. Samantha made a trip up to Washington to specifically seek out care for her conditions. However, she was not progressing as she liked and her parents brought her back home where she is more comfortable and once again, tolerating tube feedings. I’m glad to see her happier in her family’s home =)

Megan is 21 and studying to be a nurse. I admire those like her who study and achieve in academics despite being sick all the time. Megan suffers from gastroparesis combined with visceral hyperalgesia. She says she is supposed to be on liquids only, but like everyone, we give into temptation and eat something we shouldn’t. In her case, anything solid!

Kimberlin is a strong girl. She is battling mitochondrial disease. Mito has affected her gastrointestinal tract causing intestinal pseudo obstruction. Sadly, her CIP progressed to complete intestinal failure. Like me, she receives her nutrition via a central line in the form of TPN. Her central line is different from my own; she has a Broviac line. While she also visits the hospital regularly for fevers, pain and dehydration, she does so with a wonderful spirit. She loves to work and play with the other younger children in the hospital and has become great friends with many.

Megan is awesome. She helped start the Facebook group: Gutsy Teen Lounge. She recognizes how difficult it is for teens to have these digestive disorders. Teens are stressed enough with school and friends; add on to it the burden of a digestive disease and it can become very overwhelming. These diseases are not well understood or even recognized. Without the group Megan helped create, many teenagers and young 20 year olds would feel very alone. The group has brought all of us together and even though we have not met, I consider many of them to be my best friends!

I don’t know Olivia very well but after reading her story and seeing her comments on the Facebook boards, I notice that Olivia is very optimistic. She won’t let her disease define who she is. She is learning to live with the disease, not for the disease. Everything in the world is beautiful and she is enjoying simply being a part of it. She continues to inspire everyone who meets her, whether it be online or in her hometown of Kiama, New South Wales!

Amber is full of energy. No hospital stay will keep her from enjoying herself. She surrounds herself with friends and family. She has a gastro-jejunal feeding tube as well as a central line. She makes it all look so easy even though I know it is not easy. From reading her blog, seeing her posts and pictures, she has a great energy and sense of humor. Both excellent qualities to have when faced with some rather nasty diseases.

Libby is a strong fighter. She endured years of suffering the symptoms of progressing gastroparesis before she found a doctor that could help her. Her and I share that doctor. We are both patients of Dr. David Patterson and share a love and a sense of thankfulness for having him in our medical lives. However, it doesn’t just take a good doctor to combat gastroparesis. You need medical insurance that cooperates with the doctor’s plan. Libby had to fight again for another 6 months before she would receive approval from her insurance that would let her have a gastric neurostimulator placed. Now that she has the stimulator combined with prokinetic and anti-nausea medication, she is able to live a better life.

  • 8 Responses

  • Becky says...

    Hey Kirby! You did a really great job with this post 😀

  • Kirby says...

    Thanks Becky! I hope all is well with you and you get to enjoy the upcoming weekend! <3

  • Rhonda says...

    searching for what can tolerate living with this illness for 7 years got worsen , doctors is not helpful.
    stomach keeps growing every day feels like its going to burst open. look 9 months PG most of the time don’t feel like getting dress. unable lay on the right side will be sudden awaken by vomiting, liver in the right side this illness puts pressure on the liver, back, heart, lungs and bladder. yes I have all health problems of all 5 organs from this illness which believe is from two things #1 when the gallbladder was remove possible the V. nerve was damaged the other use to be on strong narcodic for 15 years live with chronic illness RSD from damage knee surgeries. no longer intake medical meds only 100% natural has saved my life.

    many foods unable to intake is anyone has this as sever as I do I am open for any suggestions.

    thank you

  • Tammie says...

    I have been diagnosed with GP and also with a bad gall bladder, after 3 months and almost loosing my job im still not cured and am waiting on the doctors. I had my last test witch was a HIDA SCAN WITH GBEF and finally they say my stomach isnt emptying and also that my gall bladder isnt emptying either. I have never thrown up so much in my 40 years. Everyone kept saying its nerves im too stressed…..wrong. After over 6 ER trips due to throwing up and many tests, over 50 lbs of weigh loss and a new fear of eating, im not sure that anything the doctor will do will ever make it ok. This is very scary and has effected my life so severely that I know it will never be the same. It was wonderful to find your website and see that many others are going thru the same thing.

  • karie says...

    my husband was just diagnosed on nov.24 2013…it has been horrible for him and sick all the time. he also has a colostomy bag due to a disease of the intestines.

  • Elizabeth Bestor says...

    I found this site tonight and I have never been so thankful. I was diagnosed with GP about a year ago. Never have I been through so much. I have been in the hospital at least a quarter of the last year. I met a friend online with GP also. She is now in the hospital having surgery tomorrow to open intestine. Tube has been placed. I’ve been crying all night because I am FIGHTING going in to the Dr. I spent a week lying in bed. No food, no water. Just so sick. I have a 2 year old and had no choice but to start being Mom. I loose weight, I gain a crap load of weight. Back and forth. My teeth are decaying painfully. Fevers, abdominal pain, just under my ribs on my left side, same spot in the back. SO much pain. I dont want to go in. I dont want my daughter to have to go through that again. I didnt urinate for 3 whole days until recently. My husband is shoving food and water at me all day. He thinks Im starving myself. I dont think he understands whats going on here. Im so glad there are others out there as well. I don’t know what I would do! Tonight I as at a severe end. Sitting here crying trying to find something, someone, some support and here you were the whole time 🙂 Thank You.

  • Anna Larson says...

    It was like a breath of fresh air when I found your story Kirby. I have been battling GP along with sphincter of Oddi disorder for the past 12 years, I too have a long story and fight many of the same battles as all of you. I have had my gastric pacemaker for 8 years and have had numerous central lines, tubes,enumerable IVs’,GES,ERCPs’,hundreds of hospital visits,EGD with Botox every 6 months,surgery’s, and now an implanted port. I too am blessed to have Dr.Patterson. I live in a remote part of Alaska which complicates things further. I would love to share my story and hopes it can help someone else. Please let me know if that would be a possibility. I have never been able to speak with anyone else that has GP and been through what I face daily. Thank you for sharing your story and thus helping many others cope with the ravages of GP. Thank you,
    Anna Marie Larson

  • Karen says...

    I’ve been having all these symptoms for year and have GERD, Acid Reflux, 4 time Breast Cancer survivor. This year has been pure Hell. I saw 4 GI doctors and was in the ER every week . My brother and I were totally frustrated and I’m throwing up the IV fluid in the trash can in the ER while the doctor says the attending GI doctors was not admitting anyone with the symptoms and sent me on my merry way . The Zofran is not working and I just try and sit still. This has got to the point I hate to leave the house or drive. Hard to find things to eat or drink. They think your crazy and want to put you on antidepressants . SMDH my brother has seen me in so much pain and feeling so freaking weak taking a shower is a task. There wanted to put a port in and send me to a dang nursing home. I was really having a Panic attack when he said, there was nothing they could do. Didn’t know what was wrong all test came back normal till I followed up with my PCP she then told me the results of the emptying test and gave me Reglan and Zofran. It’s not working and it seems to be worse at night. I need help……can’t deal with this I’ve fought Cancer 4 times it was hard and I’m wondering if all that Chemo played a part in this. I would throw up water during those treatments. I feel sick every day and stay up all night in pain.

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