As we wrap up Digestive Tract Paralysis Awareness month we’d like to bring you one last Patient Headlight feature. These features have been about just a few of the many amazing people in our beautiful community who have shined their light brightly in the dark. Today we’re talking about Lynn from Fort Lauderdale whose form of gastroparesis is rarer than most.
Patient Headlight: Lynn Wolfson – what she lost and what she gained
Have you ever heard of Hirschsprung’s Disease? Lynn in Fort Lauderdale has. She was born with it. It wasn’t easy to diagnose either. It wasn’t until she was four years old that doctors finally figured it out. “The process took four years of testing for various causes of severe constipation, constant projectile vomiting and not wanting to eat. The reason why it took so long to diagnose me was because at the time (1959-1963) it was believed that only boys with Down Syndrome could have Hirschsprung’s, and I didn’t fit that profile.”
Hirschsprung’s disease is a condition in which nerves do not develop in portions of the intestine, resulting in a form of Digestive Tract Paralysis (DTP). Most commonly (in this rare condition) the areas affected are the anus and rectum, but in some cases the paralysis can affect the entire large intestine, and some of the small intestine. Unfortunately for Lynn, she had the latter.
After surgically removing the portion of the intestine thought to be paralyzed, Lynn’s
symptoms didn’t disappear. “I ended up having many surgeries, each one removing a little more of my colon. At this point, I have had 7 ostomies and way over 40 surgeries.” But the story didn’t end there. In 2006 Lynn had a colonic motility test which found that her entire large intestine was essentially non-functional. Her large intestine, rectum and anus were removed and she was given an ileostomy. This corrected the constipation but not the pain after eating or her nausea.
“They did a laparoscopic Nissen Fundoplication to stop my vomiting.” This is a procedure in which the upper portion of the stomach, the fundus, is wrapped around the base of the esophagus. It is considered a viable treatment for gastroesophageal reflux disease, and it effectively stopped Lynn’s vomiting, but she was still nauseated. “I would become very distended and have pains after eating. I was underweight. My neck broke due to malnutrition. I am now on Total Parenteral Nutrition.”
Lynn’s been through a lot, and like others who have lived so long with DTP, Lynn has developed some excellent coping skills. She finds movies a good distraction on bad days, and strongly prefers theaters with big seats that fully recline.
“(They) allow me to lay down in a dark room and be distracted by the movie. Sometimes, just playing Yahtzee on my phone is a good distraction.”
Lynn is also doing something that you may have read about in other Patient Headlights this month. In order to keep her mind off of the nagging needs of her disease, she keeps her mind on the needs of others. “Everybody has something – some have physical or emotional or relationship or financial issues.” In Lynn’s case, she has committed to knitting hats for cancer patients. By giving effort and compassion for others in need, Lynn gains a good feeling and offsets those feelings of helplessness all chronic illness patients struggle with.
Lynn has gained other good things from being sick too – things that might never have otherwise happened. “I was very open with my daughters about my disease as they grew up and it got them interested. They are now both biomedical engineers and one is a physician doing her residency and fellowship in Pediatric Gastroenterology.” Maybe Lynn has made the doctor that will make the cure! No pressure.
This just goes to show that, for better or worse, it’s important to know your disease, and to help your loved ones understand what you are going through. “Learn as much as you can. Attend conferences where you can meet others and learn about the latest research. Find groups that pertain to your illness on social media – I’ve made a lot of friends by doing this.” Having friends and people to commiserate with is very helpful because without them chronic invisible illnesses can be very isolating.
“For a long time I felt like a victim of my disease and all of the treatments and surgeries. Through meeting other people with similar diseases and attending conferences, I have learned to advocate for myself and for others.” And that’s just one reason why we’d like to thank you Lynn – for being an active part of the community, a giver, and showing others how to empower themselves.
Please feel free to leave a comment about Lynn’s story, or YOUR story! What have you gained despite having this challenging disease?
Awareness month may be coming to a close, but we’re here to help you tell your story. Contact me at firstname.lastname@example.org if you want to share yours.