Like many people with Short Bowel Syndrome (SBS), Jenny Jones’ SBS diagnosis experience began with the diagnosis of a different condition: Familial Adenomatous Polyposis (FAP).
At the age of eight, Jenny experienced chronic abdominal pain. However, due to her family’s HMO health insurance, her parents had to receive a gastrointestinal referral from a primary care physician before she could be seen by a specialist.
“The doctor refused,” Jenny said. “She said I was just a whiny child and there was nothing wrong with me. My parents had to change insurance as soon as they could so I could get into a GI. As soon as she heard about my symptoms of pain and my family history of FAP, she immediately got me tested and diagnosed.”
An SBS Diagnosis
FAP is a rare hereditary disease that causes the development of hundreds to thousands of colon polyps. As a part of her FAP treatment, Jenny soon had her first surgery to remove her colon. Due to complications, though, her small intestine soon wrapped around itself and began cutting off blood supply; this resulted in an additional surgery to remove part of Jenny’s small intestine.
“Everything happened so quickly after that first surgery,” she said. “My pediatric GI specialist was absolutely wonderful, very knowledgeable, and an amazingly brilliant doctor. She made my SBS diagnosis very quickly after she learned what my symptoms were and how much of my small intestine was being removed.”
SBS is a condition where patients are unable to absorb adequate nutrients because they are missing part of their small intestine.
“The hardest part for me was accepting the ostomy; that was my focal point. I knew that my mom and my grandpa each had FAP and each had an ostomy, and that I was going to have an ostomy for a little bit, but I didn’t cope well with any of it. The diagnosis was just words, but the ostomy was physical,” she said.
The Support of Others
Over the years, Jenny faced numerous additional surgeries and subsequent complications, including an ostomy reversal during high school.
She’s now at a point where she doesn’t need medicines, like Lomotil, very often, although she does still need to be close to the bathroom while she’s in public places. Through everything, Jenny has been supported by her loved ones and by mental health professionals.
“When you get a diagnosis that’s life-altering, I think you should go to counseling. Get on an antidepressant if you need to. There’s no shame in either one of those things; they are tools to help us. It took me a long time to realize that,” Jenny said.
As a full-time medical social worker, Jenny contends with the U.S. healthcare system on a regular basis and in multiple different capacities. She credits her mother with instilling a tenacity in her that continues to empower her to access the care that she needs.
“I was recently diagnosed with abdominal migraines, and it took me over six months and seven specialists to get a diagnosis. Imagine what that would’ve been like on an HMO plan, with all that red tape. To get a diagnosis, sometimes you just have to be relentless,” she said. “You have to advocate for yourself enough to be able to get yourself to the right doctor who will listen to you. My GI has told me that I use the online portal more than any patient they have in the entire practice, and I probably do. I don’t wait for them to message me, and I always call if I don’t hear back. For me to get the best care, I have to do that.”
Ten years ago, Jenny started the blog “Life’s a Polyp” to chronicle her experiences as an FAP and SBS patient. This, coupled with her Instagram and YouTube platforms, comprehensively capture Jenny’s journey with these diseases.
“Over the years, I’ve become much more open. The blog went from me being anonymous and scared to identify myself to, this year, I did a children’s book and I’m working to hit a fundraising goal for FAP. I’m taking a policy advocacy course right now, and I also want to do more in-person speaking engagements,” she said.
Jenny’s online presence is incredibly important to her, from facilitating virtual introductions between FAP and SBS patients to sharing her tips for medical self-advocacy.
“I don’t know if there’s a purpose to anything but, if there is, advocacy is it for me. It brings me joy to help others,” she said. “I don’t want people to go through what I went through – I don’t want them to feel alone and scared, to not have answers and not know what to do.”
Without extensive internal work, however, Jenny’s advocacy may have never come to fruition.
“It took me a lot of years to accept myself. I had a lot of shame and a lot of self-hatred before I learned to love me,” she said. “There’s nothing for me to be ashamed about. I’m letting me be me, and that includes my diagnoses.”