Twin Diagnoses – Two Sisters Find a Path Forward with Crohn’s Disease

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Twin Diagnoses – Two Sisters Find a Path Forward with Crohn’s Disease

Alaina and Shannon Daly are sisters who share more than just a birthday. They are bright, vibrant women who are twins, but as children, they were different in more than just personality.

As a child, Alaina was always getting sick, while Shannon wasn’t.

“Mom used to joke that I was her deductible child as I was always at the doctor’s,” said Alaina. She had joint issues, fatigue, brain fog and stomach aches, so not only was she always sick, but she was unable to participate in many activities.

While Alaina was frequently under the weather, she was reluctant to share particular symptoms interrupting her schooling, with her family.

“I was ashamed of my symptoms, so I avoided telling Mom until I had to,” said Alaina. “I had such bad tummy pains which would make me double over, and my teachers were noticing how often I had to go to the bathroom.”

At 17, Alaina finally talked to her mother about the symptoms, had a colonoscopy and was diagnosed with celiac disease. She was already avoiding gluten as it made her joint pain and brain fog worse, but after her diagnosis she became even more diligent with her diet.

In 2019 Alaina had a severe flare up with chronic diarrhea, bloody stools and stabbing pain. She was constantly fatigued and had brain fog and joint pain. She couldn’t work and spent a year unable to get out of bed, and finally, in 2020, at 24 years old, Alaina was correctly diagnosed with Crohn’s disease, rather than celiac disease.

Crohn’s disease is an inflammatory bowel disease in the digestive tract, which runs from the mouth to the anus. Crohn’s disease can affect any part of the digestive tract, but most commonly affects the small intestine and the beginning of the large intestine. Some people who have Crohn’s disease may not experience symptoms for much of their life, while others can have ongoing severe, chronic symptoms.

Expertise Provides Hope and Relief

Alaina found George Salem, M.D., an inflammatory bowel disease gastroenterologist at OU Health. At her first visit she weighed 95 pounds.

“Dr. Salem was a godsend,” said Alaina. “The first time I went in to see him I just cried to him for an hour. He helped put a team together to deal with all of the issues I was experiencing — I was not in a good place mentally and he got me a therapist, a psychiatrist, a cardiologist, a rheumatologist … anything that he could think of to help me. He assured me we’d get it taken care of and would work on it together.”

“Crohn’s disease is a chronic inflammatory condition that primarily affects the gut system. It can present with a different set of symptoms — including abdominal pain, diarrhea, weight loss, urgency, rectal bleeding, and progressive fatigue. Diagnosis is made with endoscopy exams,” explains Dr. Salem. “While we currently have no cure for this condition, patients do tend to have good control of symptoms with medical management to control the inflammation and prevent the progression of inflammation.”

Inflammatory Bowel Disease typically produces debilitating symptoms that can make daily life very difficult. Early diagnosis and appropriate treatment are important to avoid long-term complications and to help individuals manage the disease.

Dr. Salem put Alaina on six-weekly infusions and prescribed her medication that she could take when she was experiencing pain and nausea.

Shannon’s Diagnosis

Alaina’s twin sister Shannon, who had rarely been sick growing up, did experience very mild symptoms from time to time, mainly, digestive discomfort. But seemingly overnight, she was hit with severe symptoms.

“I really didn’t start getting issues until about 2019 — the stomach problems, bowel movements and losing my appetite. I didn’t want to eat anything. Even drinking water would come up,” said Shannon. Things continued to grow worse.

In 2021, Shannon was in and out of the emergency room five times before finally being admitted to the hospital.

“I was so sick I could barely eat or drink anything. I was passing a lot of blood — diarrhea and vomiting at the same time, and I lost my hair. It was day after day, week after week.” Alaina contacted Dr. Salem and asked him to see Shannon.

Shannon was diagnosed with Crohn’s disease in her colon and placed on monoclonal antibody treatment injections every 10 days. As Alaina had already been diagnosed, and living with it for many years, Shannon was aware of the diet she’d need to be on. Having a twin with Crohn’s made Shannon’s diagnosis easier to deal with.

Shannon works for Oklahoma City University and explains, “My job has been very understanding. For a while I was driving out to different cities in the Panhandle talking with high school students, but with Crohn’s, it’s very hard not having a bathroom for 2-3 hours at a time when driving. Thankfully, they have been working with me so I just work in the metro area and I don’t have to do any long distances. If I bring up a concern, they’ll do anything to make it work for me.”

Alaina works at a functional medicine clinic in a position she loves. She said, “Life is like a 180 really. I used to be unable to work — I was at home for about a year as my Crohn’s symptoms were so bad. Now I work 8-10 hour days, I can go out and eat a lot more things. I can manage that better.”

A large part of managing Crohn’s disease is being on top of medication, diet and treatments. The twins still have flares or bad days, but with Dr. Salem’s help they are able to work around that.

“Many doctors just see you for a couple of minutes and give you a prescription which relieves the symptoms without finding out why. Dr. Salem specializes in Crohn’s and he is so caring. He provides care you cannot get anywhere else. He is so selfless and I don’t know what we would do without him,” said Alaina. “He has been amazing — all of the doctors at OU Health he has referred me to have been great. They all communicate and work together.”

Shannon agrees with her sister’s sentiments, “In terms of my health, I would not be in as good of a place right now if it wasn’t for Dr. Salem. I believe that if I’d gone elsewhere I would still be sick and struggling, not knowing how to navigate the diagnosis. The things he does to help us are awesome and so beneficial. I attribute my health to his care and attentiveness.”

Tips for Managing Symptoms

Dr. Salem offers the following tips to optimize the quality of life of patients diagnosed with Crohn’s disease:

Work with a Healthcare Team

This involves your gastroenterologist, nursing staff, primary care providers, and sometimes surgeons to monitor your condition to adjust treatment plans as necessary.

Follow a Healthy Diet

Some food options can trigger Crohn’s related symptoms. A healthy diet can help manage those symptoms, and work hand-in-hand with the medical management that your providers have put in place for you. You may want to see one of the registered dieticians to create a customized meal plan for you to meet your nutritional needs and answer your questions.

Compliance with Medications

Your team of providers will likely start you with certain medications after discussing available options with you in detail, outlining risks/benefits/alternatives of each option. They include anti-inflammatory options. Compliance and being activate in the decision-making process with your providers, for picking the option of your preference, is key.

Stay Active

Crohn’s disease can be a burden on you physically and sometimes mentally. Daily exercise when you are in remission will help manage your stress, boost your mood, and improve overall wellbeing. Some individuals find it helpful to engage in support groups to connect casually with other individuals, and provide a sense of community.

Find Expert Care at OU Health

The OU Health gastrointestinal care team provides comprehensive IBD treatment. To learn more, find a physician and to make an appointment, visit OU Health’s Inflammatory Bowel Disease website.