15 Photos That Show What Gastroparesis Really Looks Like
Gastroparesis is typically an invisible illness. One of the most comments we receive is “but you don’t look sick!” Or, “You look really great! You must be doing so much better!” While there are some good aspects of not blatantly looking sick, comments like that can often make us feel like others don’t believe in the reality of what we deal with on a daily basis. We vomit behind closed doors. We don’t leave home when the pain, nausea, or fatigue are at their worst. We can hide our medications and small snacks in a bag. We often do whatever we can to hide the symptoms we are experiencing, the hair that is falling out, the bones sticking out, or the harsh emotions and isolation that so frequently accompany the loss of friendships, fear, boredom, and loss of the ability to function at our pre-Gastroparesis life. We secretly cry over the losses. We can often hide our feeding tubes, central lines, ostomy bags, and surgical scars under clothing, yet we carry these things with us everywhere we go. Feeding tubes, TPN, and other treatments are often the only reason we look as good as we do, or why we are able to function at all. Yet if you pull up our shirts, an alternate reality becomes clear.
G-PACT is operated by a group of very ill gastroparesis patients, several of whom have had it for up to 30 years. We’ve been through the “dark ages” before the internet when it was even more invisible and connecting with others was not easy. Awareness did not exist. We were forced to rely on the word of our physicians, who at that time, knew far less than they do now. Few physicians had ever heard of the term. Even fewer knew what to do about it. This is why when the internet started to grow, we jumped on the opportunity it provided to reach out to others, share experiences, and increase awareness.
Sharing stories is vital. Your stories have helped us know how to advocate and direct programs to meet various needs over 16 years. They have given us information from thousands of sources which we are able to share with politicians as we advocate, physicians, researchers, friends and family who need to understand it better, and other patients who reach out to us with similar stories and help us connect patients together.
Our partnership with The Mighty has helped us reach out to people on a whole new level. Recently, The Mighty invited us to ask our community to make some of the aspects of gastroparesis visible to the public; whether visible or invisible; by sharing a photograph of what life with gastroparesis is like.
This is what several of you shared with us:
1. “Gastroparesis looks like doing once in a lifetime opportunities at the age of 15 because you don’t know if you will be able to tomorrow. It looks like being behind a whole year in school. It looks like passing out daily in school. It looks like month-long hospitalizations. It looks like wasting away. It looks like not wanting to go to school because of pity stares and rumors. But most of all it looks like I’m ‘normal.'” Laine G.
2. “My daughter has severe gastroparesis, a Hickman catheter, J-tube feeding tube, gastric stimulator, severe hypoglycemia, osteoporosis, is hospitalized every two weeks, has had countless number of surgeries, and just had sepsis and c-diff at the same time. Her stomach is completely paralyzed due to her vagus nerve being damaged during a surgery. She fights every day for an ounce of normalcy, no pain, no throwing up, and being able to have a bowel movement more often than every four weeks.” — Nancy Y.
3. “Gastroparesis: pumps and tubes instead of forks and spoons!” — Emilie L.
4. “Gastroparesis is still being able to live your life to the fullest despite being 100 percent tube fed and relying on a gastric pacer for slight symptom relief. It’s being thankful that you have friends who are there for you on your best days and your worst. It’s being thankful for every day because you never know when it’s going to get worse.” — Mady M.
5. “Severe gastroparesis, chronic intestinal pseudo-obstruction, and colonic inertia can lead to a five-organ transplant, but that is not a cure. I still have an ileostomy, J-tube, and hook up to fluids and TPN through a tunneled PICC in my chest due to very limited venous access. People don’t see this daily routine, the many scars, or the evidence of it because my clothes cover it up. I’m just thankful for every day I’m alive!” — Carissa H.
6. “Here is a photo I took of myself to depict a moment with gastroparesis. It’s very literal!” — Taylor J.
7. “Another day of severe exhaustion. My daughter just wants to be like everyone else but she knows her physical limits. Her doggie Sassy likes to be by her side when she is having a bad day.” — Sherri S.
8. “I’ve been eating this pudding (one cup) for the last hour and a half.” — Amy M.
9. “Gastroparesis is trying to live as normally as possible when things are going ‘OK.’ Carrying a backpack full of tube feed, TPN, saline, and meds that probably weighs close to 50 pounds to get you through a busy day, then sleeping the next two days.” April W.
10. “Gastroparesis is yet another gastric emptying study, and another EGD. GP means taking more medications than my 80-year-old mother. GP is having to leave a family reunion because my nausea meds were not cutting it and being around food and people eating food made me throw up too much. GP is canceling plans last minute because the pukes won’t go away. GP is being scared I’ll never feel good again. GP is a belly so bloated I look pregnant all the time. GP is having a love-hate relationship with food. GP is walking around in a Promethazine stupor.” — Stacey S.
11. “This is what gastroparesis, chronic intestinal pseudo-obstruction, and intestinal failure look like. He developed septic shock in a matter of minutes and was put on life support for four days during his last episode. It’s the numerous surgeries, ileostomy, pyloraplasty, total colectomy, G-tube, nissen, central lines, etc. It’s spending every other week in the hospital either from another episode of pseudo-obstruction or another line infection. It’s being an 11-year-old child who looks like he’s maybe 4 or 5 because he can’t gain weight or grow properly.” — Jennifer S.
12. “Gastroparesis is holding your best friend’s hand while she is in the last hours of her life.” — Kristi F.
13. “Pushing through the day for my children even though exhaustion has set in, my stomach hurts, and I just want to lay in bed.” — Devon P.
14. “Gastroparesis makes you feel like you are literally a skeleton of yourself. You continue to exist, but your ‘life’ is non-existant.” Andrew B.
15. “Gastroparesis looks like IVs, pain meds and hospital stays just hours before and after you got engaged. It’s not being able to celebrate an exciting event in your life the way you would have before your diagnosis. It’s not being able to plan anything, let alone life altering events, because you never know how you are going to feel. It’s also accepting all of those things and still living your life to the fullest you can!” Katie E.
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