It has been a long road to this point, and truthfully I wasn’t sure I was ever going to talk about this with the world, but I am finally ready to share my Crohn’s disease journey in case it helps anyone.
There has been enough unhappy news in the world, I wasn’t sure I needed to add mine to the pile for the longest time. This diagnosis has been painful, frustrating, draining, embarrassing and honestly a bit s-h-i-t-t-y. I mean if you can’t laugh at yourself who can?! Like I said, the journey here was a long one, so allow me to explain.
My first signs of Crohn’s disease
At first, assumed I had a stomach bug or ate something really bad. We were at the cabin, and I couldn’t leave the washroom. It wasn’t until my ankles and feet were swollen beyond recognition and I could barely walk that I thought of getting some help. I didn’t make a connection between what was happening with my gut and my swelling, but I knew this wasn’t normal (I later found out that I had a very rare arthritic complication that was related to the Crohn’s disease).
Back in October 2021 I started to experience increasingly bad stomach cramps and pains along with needing to use the bathroom up to 20 times a day. I suspected little and tried to just carry on until I developed dramatic pitting edema (swelling) in my legs and feet, achy joints and could barely shuffle from room to room without being in excruciating pain. A 10 hour wait in emergency later and they told me what I hoped I wouldn’t hear: it sounded like IBD.
What is IBD?
IBD stands for Inflammatory Bowel Disease, and is an umbrella term used to describe a class of inflammatory diseases of the digestive tract. The two diseases that fall under IBD include Crohn’s disease and ulcerative colitis.
Both ulcerative colitis and Crohn’s disease are characterized by diarrhea, rectal bleeding, abdominal pain, fatigue and weight loss among other not-fun things. This was not my first introduction to Crohn’s Disease, and let’s just say I was NOT happy to be re-acquainted!
My 21 Year Crohn’s Remission
Truth be told, I had technically been diagnosed 21 years ago but never really believed it was a correct diagnosis. I had just finished my rather stressful internship in dietetics in Ottawa and was suffering in the gut department. A scope and consult with a gastroenterologist told me that it “looked like” Crohn’s disease. They put me on an oral anti-inflammatory agent and it went away. For 21 years. Which is why I never actually believed the diagnosis was right in the first place: a 21 year remission isn’t exactly common. I have my theories as to why it came back, but I will never know for sure. My doctor mentioned that the vaccine booster could have induced the flare up as the disease was in remission, which has happened in rare instances.
What is Crohn’s disease?
“Crohn’s disease is a type of inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people (source)“. Unlike ulcerative colitis, Crohn’s disease can affect anywhere in your digestive tract (from your gum to your bum, so they say) and can involve a deeper layer of your digestive tract at the tissue level. It has no cure and no known cause, and can be debilitating, painful and life-threatening.
How do you get diagnosed with Crohn’s disease?
I got diagnosed with an upper endoscopy and colonoscopy, which is pretty standard. The gastroenterologist can see the inflammation in your gut with the scope and see where it is in the gut and the degree of inflammation in each area. Crohn’s disease isn’t something you self-diagnose. If you are concerned speak with your doctor.
What is the treatment for Crohn’s disease?
There are many treatments that can be used for Crohn’s disease and are designed to down-regulate inflammation in the body. Once that initial inflammation is controlled, many patients will be put on a medication to help maintain that lower level of inflammation for the long term. I’m not gastroenterologist, and of course every person’s therapeutic journey is different. My diet truthfully hasn’t changed much: food has never been the issue for me as I already eat a balanced, lower inflammation diet filled with plants. If you are needing support for any specific health issues I always recommend consulting a registered dietitian who practices in that area. There’s a LOT of bad information on the web, don’t go there.
How am I now?
I’m really good. I’m on a special injectable medication that I take every 2 weeks and I really don’t mind doing it. I mean, I would rather not take it, but I don’t have much of a choice at this point. I feel so grateful that my baseline health is so solid (I take really good care of myself) which has allowed me to truly just bounce back to what feels like 100% normal, truly. I really feel that I have my healthy habits to thank: Thank you body, I appreciate you!
If you have any questions please share below I will do my best to answer them!
Please note that the information contained in this post does not substitute for qualified medical advice. Please consult your healthcare professional.
So thankful for your willingness to share your story and diagnosis. I have watched my Dad battle ulcerative colitis for most of my life. It’s been a difficult journey. Shining a light on these less talked about diseases helps to bring compassion, understanding, and hopefully a cure! Wishing you all the best!
Thanks for sharing. Definitely gives me the intention to look into some health matters of my own. 🤍🤍🤍
Okay I think this is the push I needed to ask for a colonoscopy, so glad you are doing better now!
Thanks for sharing your story Tori. I think it’s inspiring when people in the public eye share their personal struggles. Like you said, it shows their lives aren’t perfect, which is often the perception and more importantly you could very well help others who are suffering with similar issues. It’s very brave to share such a vulnerable part of your life. I also appreciate the sharing of your dad’s story. I think the more people hear about various health issues that are often kept behind closed doors, including mental health, the more support and compassion for these issues are expanded. I hope you have a wonderful day!
Thank you for sharing. I know how debilitating Crohn’s can be.
In you research of the disease, you may have come across the name Elaine Gottschall, author of Breaking the Vicious Cycle, this book saved my husband when he was diagnosed 30 years ago. If you haven’t picked up the book, it is worth the read.
Cathy Starr says
Thank you for sharing this Tori. My son suffered with extreme shyness growing up and then when he went to university he developed ulcerative colitis (I think the food he was eating didn’t help!) He has since been diagnosed with Crohn’s and now PSC which I believe is a rare side effect from medication he took for years for his colitis…which will require a liver transplant in the not too distant future…and he’s only 32! It really helps when people with influence like yourself draw attention to diseases like this …and Alzheimer’s …it’s also good to know that we are not going through this ordeal alone ❤️
Thank you for sharing.
Helps bring an ease to everyone that maybe be affected to have a conversation about Crohn’s.
Also your stories about your Dad are fabulous.
Look after you!
Thank you for sharing your journey. Awareness is key!
My daughter was diagnosed when she was 7 years old ( 12 now) It was quite a journey to diagnosis but now she is thriving under fantastic care and the right meds.( Jillian actually featured her on her little hero’s as we were fundraising a lot ❤️)
I’ll show her this blog. It will be great for her to see other women sharing their stories and seeing how you can live a successful full life, even though not all days are 100%
Dear Tori. I was diagnosed with Crohn’s disease when I was 21. My mother had passed away and my doctor believed that it was all due to stress. Until a few years later and a new doctor and surgery I was diagnosed with Crohn’s disease. I have had three bowel surgeries. I have been on Imuran and Pentasa medication and now are only on the Pentasa. I have been good for28 years so there’s always hope. Thank you so much for sharing. Rosanne
Barbara Lewis says
Thank you for sharing. I’m sure it is very helpful to many people.
I’m sorry you’ve had to feel so crummy. Amazing that you feel so much better though!
Thanks for sharing.
Thank you for talking about this. My son was diagnosed at 11 years old (16 now). We managed to regulate it through diet, but he wasn’t growing very fast. So we had no choice but to put him on Remicade. I hope in the near future we can try regulate with diet again.
My cousin was also diagnosed at 11 years old and sadly passed away at age 43 from liver cancer. Reading about these drugs is really scary. I wish more doctors would look into more holistic treatments.
Please don’t scare people in regards to these life saving/altering medications. Remicade and humira have been miracles for myself and my daughter.
Thank you so much Tori for sharing this! I was diagnosed with Crohn’s over a year ago and can relate. Lots of ups and downs, but it helps to know that we aren’t alone. Knowing what we are facing is half the battle and taking care of ourselves is so rewarding ♥️
Thanks for sharing Tori and glad to hear your are feeling better. I also have Crohn’s and it’s not a topic that many want to talk about so thank-you for bringing awareness to this disease.
My husband has Crohn’s & it is really cool that you are sharing- it can save lives. We need more awareness of what it is & how to approach treatment. He ended up getting an ileostomy due to precancerous cells. It is also common to have related arthritic conditions (hubby has AS) so for others with symptoms, please get checked.
I’m sorry to hear you’ve been through this. I was diagnosed about 8 years ago at age 39, my daughter was diagnosed 3 years ago at age 12. Feel free to contact me if you have any questions. We’re both doing great, on different biologics. Best of luck!!
Olga Pekalska says
So happy to read you are doing better and are more or less able to do life like before again.
You truly are an inspiration to so many. Your honesty and vulnerability are so absolutely appreciated. Thank you for sharing your story. I have forwarded this blog to 3 friends with Crohn’s.
Thank you again, and keep BEing AMAZING you!!! 🤗💖💫
There are so many reasons for IBD to flare (no pun intended) its ugly head, I’m sure it’s impossible to pinpoint what caused your recent flare. But, as someone diagnosed at 15 with “indeterminate” IBD (even after multiple surgeries and biopsies over the years), I appreciate you shedding light on your story – particularly regarding your diet. There are so many pieces of “advice” thrown at us by unqualified bystanders that seem to blame us for poor diet, lack of exercise, etc. that it can lead to EDs and other issues.
Very brave of you to share your story and I value the note on possible trigger as I am seeing this everywhere. Much healthy healing to you Tori. Thank you for sharing with us.