Take Steps Honorees understand first-hand how difficult — and empowering — it can be to live with Crohn’s disease or ulcerative colitis. 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 in support of the Foundation’s mission, and inspire hope in those living with IBD.
To nominate a Take Steps Honoree, please contact your local walk staff.
My name is Jada. My battle with Crohn’s and Colitis started at the age of 11. I was a in middle school and just before school started, I was starting to have a lot of stomach pain and frequent bathroom use. Before that I had not had any stomach or digestive issues so we thought nothing of it. Entering middle school was a big transition and when I continued to have the same problems we overlooked it as change and stress. A few weeks with the symptoms, my mom started calling my family doctor and sharing her concern for my symptoms. The doctor ordered blood tests and stool samples but couldn’t really tell much other than I had inflammation. My mom requested a referral to a gastrointestinal doctor which landed us at Devos. The first doctor we saw said I was a stressed teen, needed more fiber and sent us on our way. On Halloween, my mom took a picture of me and looking at it the next day noticed how emaciated I was and called the gastro office back and requested another doctor’s second opinion. Thankfully, she ordered a colonoscopy and endoscopy and after those procedures she told my mom “you have a very sick little girl. She has Colitis.” She prescribed my first UC medication and some steroids, along with a lot more appointments.
I did well for about a year. The symptoms were nearly gone and I started to feel somewhat normal again. The next December I started feeling very sick again and I kept telling my mom something wasn’t right and I started missing a lot of school. My mom requested another colonoscopy because bloodwork was not an easy task (I’ll tell you about that in a little bit). My doctor ended up taking a biopsy and after the procedure told my mom “everything looks great in there.” This was really hard for me to hear because I just knew something wasn’t right. We got a phone call a few days later confirming that it wasn’t right that my Colitis had now turned into Crohn’s and the medication wouldn’t treat Crohn’s. I started a new drug as well as a few others that go along with it and this was my introduction to immunosuppressants, but it was still in pill form, so I was ok with it. The pitfall of this one is that it required bloodwork minimally every 3 months to make sure my liver and pancreas were tolerating it.
Now enters why bloodwork and needles play an important part in my story. I also suffer from trypanophobia—aka needle phobia and have since I was a small child. As you can imagine living with a chronic illness there isn’t really a way to stay away from needles however I was not in place to be able to manage a chronic illness and overcome a phobia. This may have been the most stressful part of my disease. For 6 years, my gastro doc had to advocate for me (because she saw the phobia in live person) for me to be fully sedated for anything where a needle was involved. It was an out of body, no control, complete fight for my life reaction and I felt helpless, embarrassed and defeated. I met some truly fabulous medical staff along my needle phobia journey and some who made terrible comments and lacked compassion. As I was fighting for my health, my doctor decided it was time to take the pressure off curing my needle phobia and focus on my health.
I went into clinical remission and started to find myself again. The only downfall to immunosuppressants is that I seemed to get every little cold and illness. Enter COVID, it was a scary time for everyone but particularly scary for those of us with chronic conditions not knowing what it could do to me. I got COVID that December and life has never been the same since. Since having COVID I have been out of remission and constantly sick and I mean constantly like 15-20 bathroom trips per day, unbearable joint pain, days where I can’t get out of bed, my mental health struggles and its hard for me to keep up with life. After much advocating, my mom convinced the doctors to do some investigating into why I was feeling so terrible. They finally tested my levels and realized I had created antibodies to my medication which is basically like taking no medication at all. Back on the steroids which if you ask anyone who has to take them, they are both a blessing and a curse.
Here is where my story gets real for me. My doctor tells me we have come to the end of oral medications and the only thing left involves needles. At this point, I had been to multiple medical and holistic approaches to help with my phobia and haven’t had success yet. She tells me the next option for treatment is a shot, oh goodie and the panic sets in. Luckily, I needed bloodwork, so I got to be sedated and get my first dose. I initially felt a bit of relief and after 2 more doses I started to feel horrible again. My bloodwork came back and once again my body had created antibodies to the medication, so it was onto the next treatment.
The next biologic the doctor suggested was a reoccurring infusion. She tells me it’s an infusion and every part of my body and mind are screaming no way. For the first several infusions I was sedated first then would go upstairs and get my infusion. Let me tell you how much fun an infusion center is for a needle phobic person, I wanted to jump from the chair and run out.
I finally started to feel some relief again and started feeling like myself. In July of 2022, I started getting terrible pains in my stomach and got very sick. After two trips to ER, they realized my gallbladder was bad and I had to have it removed. All while my Crohn’s symptoms weren’t improving.
Fall 2022, my symptoms were not improving, and I missed a big chunk of my senior year as well as spent a lot of time at “Hotel Devos”. I also came down with COVID a second time. Not only were my COVID symptoms terrible so were my Crohn’s symptom, but I had also never felt so terrible. My bloodwork showed that the biologic medication amount in my blood was extremely high, yet I wasn’t getting symptom relief, so the doctor said it was time to switch treatment again.
I just took my 4th shot of my new medication and I have had minor relief, but most days are endlessly running to the bathroom, lacking energy, feel like my joints are ninety years old and could sleep 20 hours a day. The doctor is hopeful that this treatment will do what it’s supposed to, it’s a slower acting medication so she wants to give it more time.
The silver lining is I conquered my needle phobia. It was the hardest thing I’ve ever had to do but in December of 2022 I gave myself my first shot and got bloodwork successfully.
This journey is indescribable and not easy to put into words. Over the years, I have found great support at Camp Oasis and have attended for 6 years. I get to be myself and around others who are battling just like me. I cannot thank my doctor Deborah Cloney enough for always listening, educating, and being my doctor for so many years. I want to thank my family, especially my mom, there is no one like her that will fight for me. To my horse who is my best friend, my listening ear, and can always put a smile on my face no matter how I feel. To my cats, dogs, and bunnies who lay with me and keep me company on the hardest days. For now, my battle with Crohn’s continues as we continue to figure out what will work with my body to combat this horrible disease in hopes that I can be in remission before heading off to college in the Fall.
I was 17 and a senior in high school when I started having stomach issues. My friend and I would go out to eat together once a week, and inevitably an hour or two later, my stomach would be a mess and I would hurry home to the bathroom. In college I continued to have some stomach issues as well as other issues which led to an upper GI, lower GI, and blood sugar tests. All showed “nothing wrong”. I asked about Crohn’s Disease because my dad had it, but it was blown off. We moved to Arizona, and I again had issues and went to a doctor. I asked about Crohn’s as a possibility, but after an exam at another GI office, I still had no answers and was told it was not Crohn’s Disease. Once we moved back to Michigan, I saw yet another doctor for all of my stomach pain, asked about Crohn’s as a possibility but it was blown off. After an exam he told me I had a pelvic infection and gave me antibiotics. A month went by with no improvement, and periods where I was sent home from work because I appeared to be in so much pain. I went back to the doctor. He did more tests and prescribed another round of antibiotics for a “pelvic infection”. Over the course of nine months, I made six trips to the doctor because of excruciating pain, throwing up from the pain repeatedly, literally falling to the floor in pain one day while shopping in Home Depot. Each time he asked if I could be pregnant, did a pelvic exam and told me I had a pelvic infection and gave me antibiotics. During the last visit to him, I was quite frustrated when he asked if I could be pregnant. I weighed about 115 pounds at that time and had struggled for nine months with pain and no answer. He wanted to do another pelvic exam and give me more antibiotics, to which I responded that I had already been on five rounds of antibiotics, and it wasn’t helping. The pain was causing me to throw up it was so bad. He told me I shouldn’t throw up, like I was causing it, and there was something else going on if nothing he had done had helped up to this point. He was quite angry with me for questioning him and said maybe I had endometriosis and referred me to a gynecologist. The gynecologist office mailed me a bunch of paperwork with a variety of health history questions and when I went to the appointment, they had actually reviewed it all! I will never forget the first thing the doctor asked after reviewing my information with me, was “have you ever considered Crohn’s Disease” and I laughed and said seriously?! I have asked every doctor that. He referred me to a gastroenterologist, and when I went to him, he didn’t think it was Crohn’s Disease either, but agreed to do a colonoscopy to check. Turned out, it was indeed Crohn’s Disease even though in his opinion, I didn’t have “traditional symptoms”. I finally had answers eight years after my first issues. He put me on some medication that I had bad reactions to, took me off and put me on a steroid to try and get a handle on the pain and disease, which helped but I gained 30 pounds in 30 days. I then got put on a biologic treatment which I was on (except while pregnant both times) until a couple years ago when my insurance company switched me to a different medication. It was December of 2003 that I was diagnosed. About five years ago, I started getting really sick every month with my periods. They were setting off my Crohn’s and I would spend a night “sleeping” on the floor of the bathroom in between sitting on the toilet, while throwing up in the trash can on my lap. I’d always had rough periods, but this was way worse. The gynecologist tried an IUD and many different pills over the years, but nothing was helping and I ended up with a partial hysterectomy in March 2019. About nine months later, I was pain and sickness free. My body also took a while to adjust to the new medication. While they are biosimilar, I was surprised it took at least a year for my body to adjust. But the good news is that in October, my colonoscopy showed I am in remission 😊
The reason I had been asking the doctors about Crohn’s is because my dad had Crohn’s Disease. When I was in elementary school he had been in the hospital for maybe a month while they figured out what was going on. He would stop eating and feel better but immediately go backwards any time they gave him real food. They finally determined it was Crohn’s, and he had to have some of his intestines removed as they were so bad. He was taking about five medications to treat his Crohn’s and was in the process of looking into switching to an infusion instead of the pills/powder drinks. Before the transition could be made, he wound up in the ER in March 2020 due to the Crohn’s and the doctors found he was in way worse shape than they thought. They discovered a hole in his colon in addition to the problem with his intestines. While in surgery, he lost too many platelets, and never woke up. It was three months before his 69th birthday. Way too young as his mom passed just weeks before her 90th birthday and his dad was 87 when he passed.
As soon as I heard about the Crohn’s Walk in Grand Rapids, I knew I had to get involved and help raise money. I think the first walk I attended was September 17, 2005. I was pregnant with my first child, and it was my birthday! We have raised money every year as the walk changed and Take Steps started, the location changed several times, and date changed, but we always participated. There was a year or two that we didn’t make it in person for some reason, but we mailed in the donations those years! We have always gotten involved in the walk, and our family has been quite supportive always, but even more so after the passing of my dad. The walk was actually on his birthday the year after his passing, making it even more emotional than normal.