Meet our 2024 Southeast Michigan Honorees
Honored Heroes share their stories to let other patients know they are not alone on their journeys — because no one should face the challenges and uncertainty of inflammatory bowel disease (IBD) in isolation. Through their stories, Honorees raise awareness of these diseases, raise funds to support the Foundation’s mission and inspire hope in those living with IBD.
To nominate a Take Steps Honoree, please complete this form.
Adult Honored Hero David Paull
Starting nearly 20 years ago, I had what I classified as a “sensitive stomach”. I thought maybe I was lactose intolerant or just had to be more careful about what I ate. After dealing with this for 5 years, my illness got so bad that I could no longer ignore it. After undergoing many tests, some of which were not so comfortable, I was finally diagnosed with Crohn’s disease. I immediately went on heavy doses of steroids and a cocktail of other drugs to try and help my symptoms. I was fortunate, I only needed two surgeries and quickly found a drug that I could inject every 2 weeks. When that became less effective, I switched to infusions every 6 weeks, that I still receive. After years of struggling, I am in remission.
I still battle daily with not only the physical side effects of having Crohn’s, but the mental part as well. Most people think that I have a fear or some type of social issue when it comes to eating in public. The truth is, I spent so many years in fear of becoming sick every time I ate, I stopped eating outside of my house. I was scared that I would have to literally run to the bathroom, so it was easier to not eat all day and just deal with any potential for getting sick after eating, from the comfort of my own home. Even though I rarely have issues anymore, mentally I still struggle to get over the fact that I could get very sick after eating a simple meal.
There are no cures for Crohn’s and Colitis. I was fortunate that I was diagnosed as an adult in my mid 30s and could handle whatever the doctors had planned for my treatment. So often it is young children who are diagnosed and often spend years in and out of surgery and lengthy hospital stays. Again, I was one of the lucky ones.
Once my Crohn’s was under control, I decided I needed to give back. I joined the Board of Directors for the Crohn’s and Colitis Foundation and have been doing my best to raise awareness, and funds, for this extremely important cause. I served on the Board for over 10 years, including Board President my final 3 years. I have seen first-hand the great work the Foundation has provided for patients and caregivers. From Education and Support groups to the amazing experience provided by Camp Oasis, the funds we raise go directly to fighting these diseases at every level. Thank you for supporting the Foundation and I can’t wait to see you at this year’s Take Steps Walk!
Pediatric Honored Heroes Olivia & Quinn Keller
Hi, I am Robyn, the girl’s mom, here is Olivia, 8 years old, and Quinn’s, 5 years old, IBD journey. Let’s see, when did I first know that something wasn’t right with Olivia. Olivia was having her second birthday party, and she started to have diarrhea. This continues for what seemed like 2 weeks. The doctor just said that she had a stomach bug. Soon after the diarrhea stopped, Olivia was constipated, and it just got worse. Every day was a crying struggle for Olivia to go to the bathroom. There were lots of tears shed by not only Olivia, but me as well, watching your child suffer is the worst feeling.
When we finally got the doctor to help a bit more, it was suggested that we give mineral oil to help loosen things up inside to help her. This did not go over very well as Olivia hated it and it would make her vomit. Over time, sometimes the constipation would get better or worse but overall, it was always there. I found a pediatric suppository that I would sometimes have to use after days of constipation. Olivia hated that, as did I, but they worked, and it make her go whether she wanted to or not. Throughout this time, Olivia developed an anal fissure and there would be blood most times in the stool.
In 2018, after having my second child, Quinn, I could not handle the constipation anymore and I demanded that we be referred to a GI specialist that could help us. Quickly, we were seen in the Pediatric GI clinic at Mott Hospital and scopes were ordered and able to be performed within 3 weeks. The day of the testing we were told that the likelihood of Olivia having IBD, specifically Crohn’s Disease was extremely likely, but we had to wait for biopsies to confirm. The following week, we were scheduled to meet the doctor to discuss options for treatment of our now confirmed Crohn’s Disease diagnosis.
We had decided to go with infusions to treat this and that the frequency would be every 8 weeks. This was tough news for our family to find out just about 10 days before Christmas in 2018. Over the holiday Olivia’s symptoms started to get worse. She ended up with ulcers in her mouth, her face swelled up bad, and the constipation continued. January 22, 2019, was Olivia’s first infusion. We were so happy that just days after her infusion, her symptoms started to improve, and her body handled the medication very well. The loading dose is the first infusion, 2 weeks later another infusion, 4 weeks later another infusion, then 8 weeks later another infusion and then to follow every 8 weeks after. In May 2019, it was decided that we would do infusions every 6 weeks instead of 8 weeks, due to her ending up in the ER due to breakthrough symptoms.
Later in 2019, after 5 months of infusions every 6 weeks, we changed cadence to every 4 weeks and started a round of steroids to reduce her current symptoms and help us get through to the next infusion. During this course of oral steroids, Olivia developed steroid induced psychosis and we needed to immediately wean her off the steroids, and we have not used them again on her since. In June of 2020 we did another scope. Despite minimal symptoms, she still had mildly active disease in both the upper and lower GI tract. This prompted us to start taking an oral medication as well as our infusions. After about 18 months of dual therapy, Olivia was finally considered in clinical remission.
Around the same time (December 2021), I had taken Quinn into the same GI Clinic for an evaluation. She was having very similar issues that Olivia had early on. They just did some labs initially and everything came back within normal ranges. The symptoms that Quinn had mirrored exactly what Olivia used to do, crying before, during, and after all bowel movements.
The summer of 2022 was quickly approaching, which meant, Olivia was finally able to go to Camp Oasis. Camp Oasis was the one thing we constantly heard about. Everyone who talked about camp said that they just knew that Olivia would love it. She was so excited, spending a week with kids just like her, being able to fully be herself. She had what we call, an experience of a lifetime. She loved everything about camp and talks about it all the time. Quinn was sad, since she did not have Crohn’s Disease, she wouldn’t be able attend camp with her sister, but I assured her I would find a camp she could go to when she was old enough. She was only 4.
Throughout 2022 and early 2023, from a GI perspective, things were status quo, Same meds through infusion, same frequency, Camp Oasis was once again spectacular, especially since Olivia knew what to expect. Quinn was still having her issues, so I called and got her an appointment to see her GI again in October.
Late September 2023, Quinn started having some pain in her legs. We thought it may be growing pains. I did take her to her pediatrician he did some maneuvering and realized instead of it being her legs, it was her hips. We did x-rays and things looked fine. On Saturday September 30, we were preparing for the Evening of Hope Gala, where Olivia was going to be a Mission Ambassador. Our whole family was excited to go and watcher and see the program. Unfortunately, Quinn was in so much pain that she could not make it. I told Ryan, my husband, that night that when she woke up Sunday, if she was still in pain, I would take her to the Emergency Room. The next day, that is exactly what I did. Our poor girl could not even stand up without being in pain.
We were at the ER by 10a and by 5p, we were told that we were going to be admitted for pain management. We ended up spending two nights in the hospital and they determined that Quinn had bilateral hip effusions and diagnosed her with arthritis. There was some concern over some labs that Quinn may have celiac disease. To confirm this another scope was to be done. I explained to the GI team that I already have an evaluation set up for later this month, I would rather wait until then and do a colonoscopy as well, rather than going under anesthesia twice. The team agreed and decided to do both scopes later in the week. We were released to home to begin our prep.
The next few days were tough. Quinn was taking oral meds for pain and having to do her prep, Olivia was in school and very scared as to what was going on with Quinn, and unfortunately, we did not have clear answers. Biopsies were taken and we were instructed that it looked like celiac not IBD. Relief and sadness came upon us. Relieved that hopefully Quinn would not have to deal with a lifelong disease and sadness because that meant lots of changes were going to need to happen for such a young girl. After the biopsy reports came back, our questions were answered, Quinn does in fact have Crohn’s Disease just like Olivia. We were instructed to follow up in 2 weeks at our already scheduled GI appointment. At our appointment it was all confirmed. We then scheduled the MRE and began infusions for Quinn with the same med that Olivia takes. I had a feeling early on that this was the case, and once confirmed, I knew this was just the start of what is to come for our little girl. Quinn is currently going through her loading doses of meds and will soon be getting iron infusions to bring her levels back up to a “normal” range.
She has recently stopped her daily pain meds for her arthritis, which the infusion also helps to control. Together with GI and Rheumatology we are getting both of our girls the best care. I must add, once Quinn knew she was having a colonoscopy to see if she had Crohn’s she “hoped she did so she could go to camp with Olivia”. Then once confirmed diagnosis, she is even more excited. Thank you to the Crohn’s and Colitis Foundation of Michigan and Camp Oasis staff for making living with a lifelong illness the BEST as possible for our kids! We can’t wait to walk with you at Take Steps in June.
