We rounded up eight women with IBD to share their journeys with IBD in hopes that their stories will provide greater awareness and understanding of the disease.
Michèle Rankin | Crohn’s Disease | New Brunswick, Canada
Hannah Duarte | Crohn’s Disease | Toronto, Canada
Christine Meissner | Crohn’s Disease | Toronto, Canada
What symptoms were you having that prompted to you to see a doctor?
Jessica: I was eight years old, and, apparently, was not interested in dessert; a change that alarmed my mother. I also had lost five pounds. I can’t remember much more than that now!
Rebecca: I had abdominal pain, diarrhea, and gas from around the age of 19 and was told it was IBD. For around three months before my Ulcerative Colitis diagnosis, I had extreme pain, lots of bleeding, urgency to poo, and using the toilet more than 20 times a day.
Michèle: In November 1994, I started having really bad abdominal pain that lasted three days…my husband feared it might be an ectopic pregnancy and wanted to call an ambulance but on the same morning we had a family tragedy that occurred – thankfully my pain dissipated. A few weeks later I passed a lot of blood in the toilet, which scared me into calling my doctor and she ordered a bunch of tests.
Hannah: Before I was diagnosed I was experiencing extreme weight loss, rapid decline in appetite, and blood in my stools. I was 11 when I started experiencing these symptoms and didn’t personally notice much, it was my mum who really noticed a change in my behavior, etc. and got me to the doctor.
Ashley: I was sick for a year and a half with diarrhea, blood in my stools, urgency when needing to use the washroom, lethargy and anemia that left me feeling faint many mornings. I didn’t say anything about it for a long time because I felt uncomfortable talking about blood and poo. I finally said something to my doctor who ran some additional tests and then referred me to a gastroenterologist. After our first appointment, he was pretty sure I had Crohn’s and then a colonoscopy confirmed it five days later.
Christine: In addition to 24/7 nausea, having no inclination to eat whatsoever and losing 20 pounds off my 5’2” frame, I also had the unique pleasure of experiencing erythema nodosum. Even now that I have been in remission for close to six years intestines-wise, my poor shins still struggle.
Ashleigh: I experienced my first symptoms about a week before my wedding in December, 2013. At first, I thought I had a stomach bug. When the initial nausea and stomach cramps with mild diarrhea didn’t go away, everyone assured me it was just pre-wedding nerves even though I didn’t feel at all nervous or stressed. Eventually, my stomach pain worsened, I was pooping 10-12 times per day (at Christmas!), and couldn’t eat without pain and needing the toilet. I also started waking in the night from pain and needing to go to the bathroom, which is not normal. When I started to notice blood mixed with my poop, I asked my mom – a nurse – to take a look, and we decided I should see my doctor right after the holidays.
Megan: My symptoms started in high school. I was experiencing extreme urgency to go the washroom, diarrhea around eight to 10 times a day (which was so embarrassing when I had to constantly raise my hand in class to ask to go the bathroom), excruciating pain and cramping in my stomach (lying in the fetal position with a heat pack was a daily occurrence for me), weight loss and fear of eating (for fear I’d feel worse).
When were you diagnosed?
Jessica: I don’t know the exact date, but it was in 2000. I was then mostly in the hospital from 2001-2003, then had ostomy surgery.
Rebecca: I was diagnosed in August 2016, when I was 23 years old.
Michèle: I don’t recall the exact date, as our family was going through a lot at the time, but it was in mid-January of 1995…a moment I’ll never forget.
Hannah: I was diagnosed the summer of 2003.
Ashley: November 2008
Christine: I was diagnosed in December of 2008, about four months after I started experiencing symptoms. This coincided with my big move to Toronto to live in a student residence and attend university. Despite a family history of the disease (my paternal aunt has Crohn’s as well), I was repeatedly told to just take antacids and relax on the partying. It was hard to hear that because I have never been a big drinker and didn’t go out often at all, especially when I was feeling so ill.
Ashleigh: I was officially diagnosed with Crohn’s in June of 2014. After my first symptoms, my family doctor put me on a short course of prednisone to help my symptoms until we could figure out what was going on. My symptoms resolved, and by the time I was referred to a gastroenterologist for a colonoscopy, most of the inflammation in my large bowel was gone, and a biopsy was inconclusive. An MRI of my small bowel showed no inflammation at all. Frequency, bleeding, and pain started again at the beginning of June, and an emergency sigmoidoscopy with biopsy, as well as bloodwork, confirmed a diagnosis of Crohn’s.
Megan: After three years or so of being told it was just in my head, “just IBS” and that it was a result of a hard couple years at high school, my gastroenterologist finally sent me for a colonoscopy in the second semester of first year university (2008), which indicated I had Crohn’s disease.
What has been the hardest challenge with IBD?
Jessica: When I first had it, it was just dealing with the pain, which was the root of all the other issues. The pain meant I needed to spend most of the time on the toilet, which then meant I wasn’t sleeping or couldn’t really leave my house. When I didn’t need to be in the bathroom, I was too exhausted to do anything else. Now that my disease is in remission, I find I am dealing with all the residual effects of the disease: I have a very low immune system, my skin constantly gets inflamed and causes problem, I am B12 deficient and anaemic, I also can’t digest a lot of foods well (dairy, meat, etc.) so my diet is pretty limited.
Rebecca: I’ve been in a two-year flare since diagnosis, so I think the hardest thing for me has been getting it under control. I’ve been trialing a lot of medication, and my colitis still fluctuates a lot.
Michèle: There are a few: 1) The excruciating pain; 2) Living with significant food restrictions; and 3) Helping others understand that Crohn’s is a beast that you don’t have control over simply by avoiding certain foods, activities or stressors. Flare-ups can happen even while eating only “safe foods” while resting on a beautiful beach with a good book. It’s wildly unpredictable and so you must live day by day ready to do battle at any given moment.
Hannah: The hardest challenge with IBD has been accepting the disease for what it is and mentally getting over my fear of judgement. I was tested in middle school and high school because I was always in the bathroom or was on steroids that made me look like a chipmunk – dealing with everything that comes with high school plus dealing with Crohn’s disease on top of it all was a really big struggle for me. Learning to overcome my thoughts and the worry if people will like me or not or judge me because of my disease was the best thing I could have done for myself.
Ashley: Following the path that I believed to be right for me – which was approaching my healing from a holistic perspective, tackling my diet and managing my disease that way. My gastroenterologist told me that most foods wouldn’t bother me except for maybe nuts, seeds or popcorn, but after working with a naturopath and doing an elimination diet, I was no longer experiencing symptoms. Implementing these changes had its ups and downs, but the biggest challenge came from the opinions of others (my doctor, acquaintances and sometimes even strangers) who didn’t understand this approach, and challenged be on my choices. Ten years later I remain nearly entirely symptom free – I’m thankful that I chose the path I did and didn’t listen to the naysayers.
Christine: I think the biggest challenge for me has been trying to overcome my self identity as a “sick person”. IBD has prevented me from taking a lot of chances, or travelling or applying for jobs, especially ones without drug coverage for the expensive medications I have to take. I think that getting sick as a teenager forces you to grow up a lot faster, and as a result I feel like I missed out on certain experiences.
Ashleigh: Probably the uncertainty that diagnosis with a chronic illness brings. Even though I might feel fine today, I don’t know how I’ll feel tomorrow. I don’t know if my disease will stay in remission for years, or if I’ll need surgery in a month. As a person who likes to plan everything, unknowns are really difficult for me.
Megan: The hardest part, at first, was accepting that this illness would be a forever thing that I’d have to deal with. It was also a fear that others who didn’t know why I was constantly running to the bathroom or avoiding certain social events would judge me. It’s difficult to name “the hardest part” because there are so many challenging elements to it all. Having Crohn’s disease/IBD is an invisible disease, you don’t know someone has IBD unless you talk to them about it…and at the beginning, talking about my digestive issues was extremely embarrassing for me – I hated talking about it.
Bad news (in this case, IBD) always comes with a silver lining –what’s yours?
Jessica: It’s made who I am. Without being as sick as I was and without a life-or-death decision to be made, I wouldn’t have had ostomy surgery and ended up where I am today. My life has been a ridiculous series of events, but they’ve all gotten here and I wouldn’t change a thing. (Where’s here? You’ll have to read my blog on Uncover Ostomy or find me on social!)
Rebecca: It pushed me to change my life! I quit my job, went back to college to study and make a career change – and now this summer I’m starting my own business! It also lead me to blog and make YouTube videos, which led me to some awesome opportunities like being on a discussion panel at a blogging event recently.
Michèle: My silver lining is my faith, my supportive family and friends and having developed a deep compassion for others who face challenges in their lives (IBD related or not). For example, when hospitalized my family and friends provide me with amazing support and I get to meet other patients and families who are also facing a serious health issue and be an encouragement to them.
Hannah: I think the disease has made me a more compassionate person. I take pride in the person who I am and how I care for others. I take pride in the person who I am and how I care for others. I spent a lot of time with my family and my closest friends growing up, and while I missed out on a lot of social activities because of this disease, it made me a stronger, patient, more caring and understanding individual.
Ashley: it encouraged me to learn to cook, connect with an awesome health and wellness community, and reminded me that life is still sweet in spite of the challenges we may face.
Christine: I think that living with IBD really enforces what’s important to me. My health, my family and my friends are the most important things. I feel like I can deal with most situations now. The other (admittedly strange) silver lining has been self-confidence, especially having had an ostomy bag for a period of time. I think of IBD as a built-in jerk-repellent in that if someone isn’t a good friend or date, you will find out pretty quickly if they have to deal with you as a sick person.
Ashleigh: In September, I was diagnosed with Stage 1 Malignant Melanoma. If I hadn’t been following the advice of my gastroenterologist to do skin checks and see a dermatologist for anything suspicious, it might have been ignored, and grown or spread. Having IBD means close health monitoring that, in my case, may have literally saved my life.
Megan: I have a couple amazing things that have come out of my Crohn’s diagnosis. The first is the community of individuals with IBD who I have connected with. Although I hardly talked about my diagnosis at first, I began opening up about it as I realized it was my “normal”. I learned that there really isn’t a normal and that everyone has their own set of struggles. As I opened up, I ended up meeting others with IBD and from just talking about my Crohn’s, I’ve met so many amazing people who I’ve been able to talk issues that those without Crohn’s don’t understand. The second is the awareness I have for my body. I am so in-tune with how certain foods, medications, stress, sleep, etc., effect my digestive system and overall health. I’ve learned what my body needs and what my body can’t have. With all this learning and experimenting, I’ve thankfully been able to be in remission without medication for a good five years.
What’s your one “pro-tip” for living with IBD?
Jessica: Everyone has something, and so if you have IBD, that’s your something: learn what you can about it, reach out to others who have it, and accept yourself for who are you are. A positive attitude can make the world of difference.
Rebecca: Me being the weirdly organized, practical person I am…I’d say plan and prepare. Know where the toilets are when you’re going out, always pack spare medication…and never forget spare underwear and some flushable wipes! Oh, and get yourself a radar key for disable toilets, they’re lifesavers (if you’re in the UK).
Michèle: Choosing my attitude…it’s okay to have bad days and struggle but I always try to count my blessing and focus on the positive, no matter how small. And if I’m really struggling, my family and friends gently remind me to choose joy and dance in the rain.
Hannah: My pro tip for living with IBD would be to always be prepared. Have the tools you need on hand with you at all times to deal with any issues that may arise when you’re away from the comfort of your home – you will learn what things you need for yourself over time, and when you’re prepared for any unexpected issues you’ll feel a lot better about them when you’re prepped to deal with them! One other pro-tip would be to communicate with people about your needs – you’ll find people will be a lot more understanding than you think and usually know someone living with IBD themselves.
Ashley: Practice great self-care – with nourishing food, ways to manage your stress, an awesome support network and lots of sleep.
Christine: Make friends with others who also have IBD! It’s great to be part of a community of people who understand and who you can talk to when you have questions about medications or embarrassing situations.
Ashleigh: One word: Pico-salax. You’ll never use another colonoscopy prep method again 😉
Megan: My pro-tip is being your own advocate. If you aren’t happy with a doctor you have or are hesitant about something…advocate for yourself. My parents and myself had to ask for me to have a colonoscopy…it could have been months or years struggling with “just IBS” to discover what was going on. I also realized a couple years after being diagnosed that my initial gastroenterologist was not a good fit for me. I had to ask for a new referral and I wish I had made that move sooner…because after transferring gastroenterologists I learned I had been on the wrong medication for four year. Being your own advocate is key. You know your body the best.