Dec. 29, 2019 — Hope Sneddon is training to fight a disease she no longer has.
“A cure will not help me. It’s too late,” she said.
But with funding, Sneddon is optimistic her efforts will help others who still struggle with Crohn’s disease and ulcerative colitis.
Though her ordeal with ulcerative colitis is largely in the past, Sneddon’s future is highlighted by a desire to alleviate the pain she knows others with her former condition must be going through. Part of that involves being upfront about a disease that carries the burden of social stigma.
“I’m open about my experiences because I want to be a voice for others,” said Sneddon. “I totally respect that there are individuals who aren’t open about their disease and that is okay.”
Sneddon first noticed something was wrong with her intestinal tract after her first year in college, when she was around 20 years old.
“It started off pretty mild,” Sneddon said. “So doctors said, ‘Okay, why don’t you just cut out gluten? Why don’t you try taking Metamucil?’”
Sneddon tried to adjust her diet — “but things progressively got worse,” she said.
Sneddon became increasingly fearful of certain foods and had to learn which ingredients would roil her stomach, causing sudden and frequent trips to the bathroom.
“It’s kind of trial and error trying to figure out what works and what doesn’t,” she said. “Some days I could have a scrambled egg and an avocado. Some days I could have a piece of toast.”
But some days nothing seemed to agree with her.
“So it was really hit or miss,” she said.
By age 22, she had lost 30 pounds and finally decided it was time to undergo a colonoscopy. Over her Thanksgiving holiday, she was diagnosed with ulcerative colitis.
Ulcerative colitis is a chronic autoimmune disease in which the lining of the large intestine becomes inflamed. Tiny open sores, or ulcers, develop and the combination of ulceration and inflammation can cause abdominal discomfort and sudden urges to empty the colon.
Because symptoms can be inconsistent, it is often difficult to tell whether treatments are working. Severe forms of the disease can be life-threatening or require surgery and there is no consensus on the cause of the disease.
Upon Sneddon’s diagnosis, she was informed that there was no cure and she would have the disease for the rest of her life.
The news was devastating.
“I don’t think I got out of bed for three days,” she said. “I had a pity party, for sure.”
Family rallied to support her, though, and doctors immediately put her on prednisone, a corticosteroid used to suppress the immune system and decrease inflammation. A common prescription for autoimmune diseases, the drug put her colitis in remission and Sneddon was able to get on with the next year of her life with relative normality, though mild symptoms persisted and burdened her social life.
“That first term back I started getting straight A’s because I didn’t have anything else to do,” she said. “I had friends that kind of cut me off because they didn’t really understand what was going on.”
The challenge of daily living inspired her to work the disease into her education and she wrote a thesis on people living with invisible diseases.
“It really helped me see that, ‘Okay, I’m not the only one living with something,’” she said.
Over the years, however, severe symptoms returned and Sneddon was again put on prednisone and other medications. By the time she was 24, her body was no longer responding to these relatively weaker prescriptions and doctors upped the ante by putting her on the biopharmaceutical Humira, a much stronger form of medication which blocks a naturally-occurring protein in the body’s immune response. As a result, the medication can lower the ability of the immune system to fight infections and Sneddon found herself catching illness after illness.
“A lot of people find relief with Humira, but at that point I was so sick, I wasn’t really responding to it,” she said. The medications she was taking felt more like tiny Band-Aids on a gaping wound.
In 2014, Sneddon graduated college, but was unable to fully bask in the accomplishment.
“I was incredibly sick,” she recalled. “At my college graduation I had a huge prednisone face.”
One possible side effect of the long-term use of high dosages of prednisone is “facial mooning,” or swelling of the cheeks and neck.
“It was very embarrassing,” said Sneddon.
By that summer her diet was still highly restricted and medications no longer seemed to brace against the tide of illness. Sneddon consulted her gastroenterologist about surgery to remove her large intestine. Though he was at first resistant and suggested continuing medication, he soon put Sneddon in touch with a Eugene-based surgeon who, after consultation, said he could perform the first of two major surgeries within the week.
The plan involved removing the large intestine and extending the small intestine to create a “J-pouch,” which can serve as an internal reservoir for bowel contents. As the pouch needed time to form and heal, Sneddon would have to live temporarily with an external ostomy bag until the second surgery, which would finally attach the J-pouch to her system.
Upon completing the first surgery, the surgeon found that Sneddon’s large intestine was so thin and perforated as a result of the ulcers that it was on the verge of rupturing.
“I’m really glad I didn’t listen to my gastroenterologist,” she said.
Not everything went as planned, however. Infections put Sneddon in the hospital for a solid month following the first surgery and the next year involved a series of small procedures to help aid the healing process of the J-pouch.
Through it all, there was the lingering risk that the surgery would not take and Sneddon would be forced to live with an ostomy bag the rest of her life.
“I was thankful to not have active disease anymore, but also kind of scared the rest of it wouldn’t work out,” she said.
Sneddon also experienced temporary hair loss and bald patches, a symptom connected to repeated use of anesthesia.
The day before Thanksgiving 2015, at 25 years old, Sneddon had her final surgery to connect the internal J-pouch. All went well. In the end, the process involved 12 procedures and two major surgeries.
Today, Sneddon has an immense amount of gratitude for the family, friends and medical professionals who dedicated so much of their time to helping her deal with her disease.
The ordeal increased her appreciation for supportive individuals like her boyfriend of six years.
“At my first surgery, we hadn’t been together very long. And all of a sudden he’s sleeping next to my hospital bed. That pretty much ensures that somebody’s in it for the long haul,” she laughed. “We became so much closer.”
Because Sneddon’s early 20s were largely shaped by dealing with an illness that heavily impacted every aspect of her life, she had to refocus her values.
“I really realized how material items are not important,” she said. “I didn’t get my hair done. I didn’t buy make-up. I didn’t do the things that typical women in their early 20s are doing … And you realize those things are nice, but that’s not what life is about.”
The experience has been an inspirational ingredient to Sneddon’s desire to help people.
“I learned that people are dealing with things that you can’t even realize,” she said. “So you need compassion for people.”
Now the 28-year-old high school library media specialist is not only outspoken about her condition, but actively working to raise funding for curative research.
Sneddon became involved in the Crohn’s & Colitis Foundation, a volunteer-driven nonprofit dedicated to finding cures for Crohn’s disease and ulcerative colitis. Through the foundation, she has pledged to raise $3,400 by Feb. 7, 2019, the remainder of which she must pay out of her own pocket if she falls short. As part of the pledge, she is running her first half marathon on Feb. 17 in Austin, Tex.
As well as accepting donations for each mile run in the half marathon, Sneddon is also holding a raffle during the month of January. Tickets will be $10 each.
“You can win a gift card to Nosh Eatery, a gift card to Green Salmon in Yachats, a bottle of wine and a local pottery artist is donating some pottery items,” she said. Other prizes are expected to be included as well.
Money raised will be donated to the foundation’s curative research and a camp for children with Crohn’s and colitis.
The drawing for the raffle will be held Feb. 1, and donations are also accepted through her fundraising website at online.ccfa.org/goto/hopesneddon.