We asked Lenette about her life living with Crohns.
Tell us your Crohns story?
I began having health issues in my mid-twenties, around 2007. I had an appendectomy with my small intestine adhered to the appendix. IBD was suspected but somehow that fell through the cracks. I began experiencing diarrhea and abdominal pain and I eventually became used to it and it didn’t seem as abnormal as it should have. In 2009, I was diagnosed with a perianal fistula. It was repaired after several surgeries. I had several ER visits after that fir severe abdominal pain and the final straw happened with an intestinal blockage in 2013. I was referred to my current GI doctor. He was wonderful. He listened to my entire story, took notes and then explained that he believed I had Crohn’s disease and gave the reasons why he believed that. He then lined up testing to confirm the diagnosis. I received that confirmation on December 31, 2014.
I began Humira in January 2015 and I’m still taking it twice a month to this day! After continuing to have worsening symptoms, I had an MRE in 2016 that showed extreme stricturing in my small intestines. That fall, I had 12 inches of my small bowel and terminal ileum removed. I had a rough recovery, but once I healed, I felt like a new woman! It’s now been almost 5 years since my surgery, and besides a few flare ups, some joint pain and fatigue, I have been doing great!
Although my Crohn’s is currently in remission, I have to listen to my body and rest when it is telling me to rest. That can mean that I may not get to do the things I was wanting to do that day and that is always frustrating. I have noticed that when I get good sleep, drink plenty of water and eat fairly well, I do feel better. I also take vitamins D and B12 to help keep deficiency from happening
One helpful piece of advice on the road to diagnosis and beyond- keep your medical records in a binder and also have a “one-pager” to take with you to any appointments so that you don’t inadvertently leave something out.
I started my Instagram account- @_lifewithcrohnsdisease_ 5 years ago on September 18, 2016. It was two months prior to my bowel resection and I was desperate for someone to talk to in the IBD community. It was such a blessing to me and I’m honoured to have become a place where people can ask questions or find support. IBD is such a complex and debilitating disease and it can be difficult to have a positive outlook. My goal is to build community and bring a positive light to the IBD community. 💜