In 2017, Katie Sackett began experiencing “strange abdominal cramps” and wondered if something was wrong. She had no family history of digestive problems, so she turned to a DNA test to see if it would identify a genetic cause for her poor health. The DNA test did not reveal a hidden genetic cause, but it did reveal another secret, which was that Sackett had previously unknown brothers and sisters conceived using the same sperm donor.
“I was having a flare-up and was due to be diagnosed with IBD,” Sackett, 40, of Beaverton, Oregon, tells TODAY.com. “(At the same time) I was getting the results that you had half-siblings, and I was getting bombarded with questions from my half-siblings like, ‘What kind of life do you live?’ ‘Do you have any medical problems?’”
At first, Sackett was cautious about the answer. Then one of her newly discovered half-sisters, Nicole Pampanian, sparked a conversation when she said, “A lot of us have gut issues. If you have gut issues, let us know.”
Pampanian, Kristen Geffen, and Ana Nevares, who discovered each other through DNA testing, also all have IBD. Sackett suffers from Crohn’s disease while Pampanian, Given, and Nevares suffer from ulcerative colitis (UC). Since they found each other, they have become a support group of four, encouraging each other and finding the best treatments.
“(When) I see them in the thick of it… I feel like I should be there for you,” Nevares, 42, of Oceanside, Calif., tells TODAY.com. “You are my sisters. Even though we are half-sisters, I will be there because just having someone who understands, who has been through it, has been very helpful.
Dealing with IBD alone, then together
When Pambanian was 14, she began experiencing symptoms of ulcerative colitis and it became so severe that she eventually underwent J-pouch surgery, a procedure in which doctors remove a patient’s colon and rectum and create an internal pouch using the small intestine, according to According to the British newspaper “Daily Mail”. to Crohn’s and Colitis Foundation. People usually undergo this treatment after all other treatments have failed to help. Even with the surgery, I faced many complications. Ulcerative colitis is accompanied by a variety of gastrointestinal symptoms, and the stigma surrounding discussing such topics means patients suffer in silence. But when she met Nevares, she immediately felt a connection.
“You’ve already had the surgery, the J-pouch surgery, and you’ve already had the J-pouch surgery. We’d say, ‘How crazy, you have ulcerative colitis, you have a cyst, and you got sick in high school and I got sick in school high school,” Pampanian, 44, of Chandler, Ariz., tells TODAY.com. “We’d go back and forth talking about our surgeons and our procedures.”
Pambanian had surgery in 2002, and Nevares had hers in 2006. However, their paths diverged. Nevares has had few complications since undergoing the procedure.
“For 12 years straight, I didn’t take a single pill and experienced very small changes[in my health]and I was fine,” says Nevares. “Then I got my first bout of pouchitis.”
Pambanian suffered from several health problems, including several bouts of sinusitis and an infection in her purse, and required various procedures and treatments. Nevares has recently started having some issues with her purse.
In some ways, Geffen and Sackett’s stories run parallel, too.
“(Our debut) was after the kids were born and we were healthy — until it wasn’t,” Geffen, 42, of Sun Valley, Idaho, tells TODAY.com. “Having sisters who’ve been through it before, knowing what tests to order, what doctors to go to (it’s been helpful)”
Pampagnean and Nevares stepped in when Geffen and Sackett felt too ill to speak for themselves.
“When you’re really sick and you’re in the hospital…you can’t be an advocate for yourself,” says Geffen. “I can’t imagine Katie and I struggling through this on our own.”
Pambanian participates in online groups and with the Crohns and Colitis Foundation and has been hearing about Dr. Fiza Ramzy. Patients thought it was “the best”. When it became clear that Geffen and Sackett might also benefit from the briefcase, they decided to see Ramsey together.
“We had surgery the same day, by the same surgeon,” says Sackett.
Although Sackett has Crohn’s disease, it works a little differently which is why her doctor thinks the bag might help her. Geffen underwent surgery the same day as Geffen and continued communication between the siblings, who had learned they shared more than just IBD.
“We have a very close-knit bond. We’re advanced nurse practitioners and we’re both in the same field of anesthesia,” Sackett says. “You have more connection with someone who has the same interests as you, the same job you do, and you look alike too. That’s really cool.”
Three of the four sisters, with the exception of Nevares, underwent surgery with Ramsey. Pambanian recalls one night they had an “enema party”.
“We have procedures the next morning and we have to get an enema,” she says. “I say, ‘Okay, one person in the bathroom at a time.'”
Ulcerative colitis and pouch surgery
“There are two components to IBD — one is ulcerative colitis, and the other is Crohn’s disease,” Ramsey, MD, director of the Inflammatory Bowel Disease Center at NYU Langone Health, tells TODAY.com. “About 3 million people — split 50/50 — have ulcerative colitis or Crohn’s disease in our country.”
Either way, something triggers an immune response that causes inflammation. In ulcerative colitis, the inflammation occurs in the colon and rectum, also known as the large intestine, while in Crohn’s inflammation it can occur anywhere, but is most likely to occur in the small intestine.
“We don’t know the exact reason,” says Ramsey. “It’s an immune disorder that causes inflammation.”
What “causes” the inflammation is still not clear. He says there are genes that contribute to a person’s likelihood of developing the condition, but that no single gene appears to control it, and the genetic link is “about 10% to 20%” of people with it.
“It doesn’t necessarily mean that someone with a family history will get it,” he says.
Symptoms of ulcerative colitis include:
- bloody bowel movements
- Urgent need to defecate
- The frequency of defecation
“It can be both awful and very humbling,” Ramsey says. “Patients with ulcerative colitis may have (to wear) diapers or have accidents in the middle of nowhere that can be very humiliating and take away their dignity and complement their stigma.”
Unfortunately, lifestyle changes “don’t affect it much” and patients can take biologics that help “reduce inflammation in the gut”.
“This translates to decreased frequency and urgency and healing of the mucosa in the large intestine, or in the colon or rectum,” he says. “Unfortunately, 25 to 30 percent of these patients do not respond and eventually need surgery.”
The surgery, which is a J-shaped bag, requires two to three procedures. First, Ramzi removes the colon and rectum and gives the patient an ileostomy for six months to help the body recover. He then creates a new “rectum internal tank” and connects it to the anus. For many patients, this procedure appears transformative. This means that patients do not need an external ostomy bag and can use the bathroom when defecating. Many experience fewer symptoms.
“The success rate of this procedure in our hands for patients who can have a better quality of life is more than 95 percent,” says Ramzy. “Some patients say they would like to have the operation much earlier.”
IBD often feels like an invisible disease. Often, people do not consider what it is like to live with such urgency that finding a bathroom is an emergency. Many believe that the sisters are healthy because they “look fine on the outside.”
“It’s an invisible disease, and it’s something that has a stigma attached to it,” says Pambanian. “It’s important for people to feel that they are not alone and that there are other people here (with them).”
And Nevares notes that many people take medication for colorectal cancer and lead completely normal lives. She and her sisters are unique, but she hopes that by sharing their stories, people with more serious conditions will feel less alone.
“It’s a very small subset that needs a J-bag. That’s what I think is very special about our story is that we have such serious cases,” she says. “Some people will get a diagnosis and take medication for two weeks and never have symptoms again.” never.”
For Given, who grew up as an only child, having siblings is great but it’s even better if they understand her health challenges.
“You can’t even imagine or empathize with what that means until you live through it, which is hard to say, but true,” says Geffen. “Having sisters, being an only child…it’s beyond magic.”