So you’ve heard from my perspective and the caregiver’s perspective, but what about the patient perspective? I have been blogging about my experiences with IBD since 2021, and while I love sharing my knowledge with you, I have decided to start a patient spotlight series to give others a voice and platform to share their story. I’ve come across quite a few newly diagnosed patients recently and it reminds me of when I was first diagnosed with very little direction and no community to talk about it with comfortably. Through this patient spotlight series, I want everyone to know that the IBD community is larger than we think and there are people who understand what you are going through.
For this first episode, I am featuring a friend of mine from support group. She has asked to remain anonymous, so we will call her Amanda. Amanda was diagnosed with Crohn’s disease at age 28 after several years of intermittent fatigue, gas/bloating, and mild pain in her lower left colon area. She first developed a cycle of diarrhea/constipation a few times per month then noticed some mucus in her stool, but she felt too young and embarrassed to go to the doctor. One to two years prior to diagnosis she had a severe stomach flu that kept her in the bathroom and bedridden for days. She believes this was her first major flare-up of Crohn’s. It wasn’t until the spring of 2001 that she went to the ER. After many tests and a colonoscopy, she was diagnosed with Crohn’s disease.
After a week on prednisone, she was back in the hospital for an intestinal perforation with an abscess which led to an emergency ileocecal resection with a life-threatening infection. In addition to prednisone, Amanda has also tried antibiotics, Asacol, Pentasa, Humira, Hyrimoz, and is now currently taking Rinvoq. While Amanda still has occasional flare-ups, she feels better and healthier overall.
I sat down with Amanda and asked her to answer a few questions about her experience.
What is or has been the hardest part about living with a chronic illness?
“The hardest part about living with this chronic illness is the mental aspects, bad fatigue, and digestive symptoms that are very unpredictable, making it challenging to get needed work/life responsibilities done at times. I must be flexible, taking it day by day and sometimes needing to cancel plans with people. Usually, friends and loved ones can’t fully understand and that’s ok, they don’t have to. It took a long time for me to stop being embarrassed about my illness and do the right things for me, not for others just to make them feel comfortable. I am very grateful to still be here and so in trying to live my best life I have made many, many changes over the years like prioritizing sleep, changing my diet by not drinking alcohol or any carbonated or caffeinated drinks, no chocolate, little to no sugar, no greasy deep fried or spicy foods, mainly softer well-cooked healthy foods. I started therapy and became open and willing to act with positive steps to help myself cope better mentally. I had to get out of my comfort zone, start reading the Crohn’s and Colitis Foundation website, and join their Northern Nevada support group that Christie started. I’m so grateful for that, because she helps me to feel supported and not alone, with her kind heart, patient listening, and the latest data and resources from the Crohn’s and Colitis Foundation that is available to help all of us.”
What tips do you have for someone who is newly diagnosed?
“Your life is not over, even though it feels like it sometimes. This is challenging so don’t forget to validate your feelings of anger and grief, it’s a waste of time and energy hoping someone else will validate them for you. Look for the good; you can still find joy and happiness in many things so remember to include fun and laughter as often as possible. Ask yourself “What CAN I do?”, “What am I making this mean? Is it true, just a belief, or do I need to do something to reset?” Then most importantly, act and keep acting each day by doing at least one positive thing to help yourself mentally and physically not give up. Of course, you also need to try to find a GI Dr. that is knowledgeable, advocate for yourself, and then do what Dr. says…..all the things that you don’t want to do, like….taking your meds correctly and on time, getting blood tests or procedures needed, sleeping enough, eating healthy in order to get or stay as well as possible. This illness isn’t your fault and you didn’t cause it, but holding yourself accountable to at least try to do as much as you can to be well can’t be overemphasized enough because IBD and Crohn’s flares can be serious and possibly even life threatening.”
What are some things that help you cope and you find comfort in?
“The things that help me cope are watching comedy or motivationally inspiring YouTubes, TV shows, or movies, exercising, reading, learning something new, calling or seeing friends or family, and listening to guided mediations on these two apps: (1) Insight Timer app (free or low cost-guided meditations for sleep, and a huge variety of other things including short and long meditations specifically for IBD & Crohn’s). (2) Nerva app ($$ annual subscription; gut directed hypnotherapy and breathing techniques for IBS that I find also helps me with IBD). For me, music is very therapeutic so turning on happy, fun, dance, or spiritual music helps change my thinking when I’m spiraling down into anxiety or negativity. I also find it very calming to draw, paint, garden, or any other creative outlets that focus on mindfulness or help me release pent up emotional energy when needed.”
What would you like others to know about this disease, especially those who don’t have a chronic illness?
“I have to say that in dealing with Crohn’s for 24 years I’ve had lots of weird symptoms that arise in other areas of my body which can also be very debilitating. It’s not only the symptoms on TV commercials that affect people with Crohn’s, but there can also be many other symptoms that affect various parts of the body because it is an autoimmune disorder. It would be nice for those without chronic illness to show kindness, empathy, and patience because we are doing our best just as you are, but unfortunately for us there’s a lot that is out of our control with Crohn’s disease. It’s not our fault, we didn’t cause it, and there is no cure yet. But thankfully research is being done around the world that will hopefully someday cure this complex illness that is being diagnosed now at an alarming rate in children as well as young and older adults.”
Thank you, Amanda, for being willing to share your story and give advice to those who are newly diagnosed. It has been a pleasure getting to know you over the past few years sharing laughs and tears about IBD. By sharing our stories, we are removing the stigma of these illnesses one day at a time and hopefully helping others who are suffering in silence.
If you or someone you know would like to share your story as part of this patient spotlight series, please contact me so your voice can be heard!
Turning Wellness into a Lifestyle 