Hi all! I’m very excited to introduce Ashley – a very inspirational person who is a trained nutritionist, yoga instructor and personal trainer. She also has Crohn’s, and has really gone to great lengths to raise awareness. She’s actually the inspiration for this section: on her own blog, TriNutrition, she shares stories from other people (my story went on there a month or so ago), and its with her blessings that I am doing the same on here. It only seems fitting that I share her story on here too. So thats enough from me, time to hand over to Ashley!
Hi my name is Ashley Anderson. I’ve had Crohn’s Disease since I was 9 years old and I’m now 29. 20 long years.
“It unfortunately took me a long time to get to where I am now. It also sadly took a long time before I knew what I had and was officially diagnosed with Crohn’s Disease. The journey hasn’t been easy and there have definitely been times when I’ve wanted to give up (or times when I did give up and then weeks or months later decided to pursue the lifestyle journey that I believed would help me)” – Ashley Anderson
When I was first diagnosed – 10 years to get a diagnosis?:
I was first diagnosed in the hospital at 16 years old with ‘indeterminate colitis’, after a visit to the emergency room, and wasn’t officially diagnosed with Crohn’s disease until I was 18 years old.
You’re probably wondering what happened between age 9 and age 16?
Well, I was discharged from several serious hospitalizations with many different speculations: bacterial infection, food poisoning, IBS, intestinal parasite, too much stress, ate something bad, anorexic, child neglect and abuse…
“It was January 1995, at the age of 9 that Ashley had the ‘flu’ and then my husband and I realized that it wasn’t the flu as it went on much longer than a few weeks, she was passing far too much blood in her stool, and was going to the washroom 10-20 times per day. We took her to the family doctor and she was referred to a specialist and later admitted to the hospital for several days.” – Karen Anderson, Ashley’s mom
In search of strength, courage and faith:
At such a young age I had to find the strength and willpower to pull through all the tests, emergency hospitalizations, IV’s and PICC lines, drug side effects and body changes that I underwent at the beginning.
“The doctors were not 100% certain of what Ashley’s diagnosis was. This was very frustrating to us as parents because we needed to know what we were dealing with and how we could help Ashley live each day with it.” – Karen Anderson, Ashley’s mom
It was a rush all at once and I was terrified, depressed and hopeless.
Tests and Procedures:
Colonoscopy’s, endoscopy’s (and every 2 years regularly)
Ultrasound (discovered I have a horseshoe kidney!)
Endless blood tests
Insertion of PICC line (a tube that went inside a vein in my arm up into my heart)
Intestinal biopsy’s (many)
Endless stool tests
Celiac disease test (biopsy)
Skin and blood allergy tests
Extraintestinal Manifestations (my symptoms weren’t just isolated to my gut – would occur during a Crohn’s flare-up):
Anxiety disorder, panic attacks
Iron deficiency anemia
Uveitis – blurred vision, eye pain, blood-shot eyes
Rheumatologic disease (seronegative spondyloarthropathy) – aka arthritis in my knuckles, handles, feet, knees, elbows, hips (sacroilitis)
Erythema nodosum – sore, painful red bumps on my shins
Osteopenia (bone loss, borderline osteoporosis due to excessive prednisone use)
Rectal fissure (a tear in the intestinal lining that bleeds if opened)
Peripheral neuropathy (tingling in my hands and feet)
Mouth ulcers, gastric ulcers, duodenal ulcers
Oral thrush (due to antibiotics and prednisone) – a fungal infection in the mouth that felt like ‘cotton balls’ in my mouth and made me very, very nauseous
Medications I’ve been on:
Aminosalicylates – Sulfasalazine, mesalamine
Anti-diarrheals – Loperamide, Cholestyramine,
Corticosteroids/ anti-inflammatories – prednisone, hydrocortisone, Entocort
Antibiotics – Flagyl/ metronidazole, Ciprofloxacin
Anti-anxiety/ anti-depressants – Paxil, Ativan, Cipralex, Wellbutrin
Immunomodulators and Immunosuppressant’s – 6 mercaptopurine/purinethol, Imuran/ azathioprine
Biologics – Humira/ adalimumab (self-injection)
Pain relievers- Tylenol, codeine, morphine
Vitamin/ Mineral Supplements – Vitamin B12 injections, calcium/vitamin D supplements (for bone loss associated with prednisone use), Iron supplements (Feramax, Ferasorb)
Massage therapist (s)
Energy medicine healing modalities (e.g. reflexology, therapeutic touch, reiki, Rolfing, Tragger Technique, Feldenkrais method)
On my death-bed in a serious Crohn’s flare with sepsis:
I felt like my life was going to end, and at some points when even though I was on complete bowel rest and hadn’t eaten anything in 2 weeks and was still passing lots of blood in my stool, I actually DID think my life was ending.
“It was heartbreaking to watch my daughter be so sick. As a mother I felt helpless at times as she would be home sick from school many days at once. My biggest concern was the cramping abdominal pain that she was experiencing, also bloody stools, and I was concerned that she was becoming dehydrated.” – Karen Anderson, Ashley’s mom
And maybe that’s when I thought about all the things I wished I had striven to achieve in life but put off.
Or the times when I told myself I wasn’t strong, beautiful or brave enough to do something.
“If I make it out alive, I will live life differently”
And as I lay there in my hospital bed thinking this, I told myself that if I did make it through this, then I could do all of those things.
Well, I shocked myself when got to first eat again, and when I started feeling better and better, little by little until I was back at school.
Somehow I seemed to mesh back into school and life like nothing had happened, but something big did happen.
Needing to connect with other’s living with Crohn’s and colitis – in search of Mentor’s and Hope:
I found myself searching for people I admired and wanted to get to know them, know how they lived, how they did the great admirable things they did and find out where and how they started because I wanted to do things like that too.
I wanted to contribute to the world how they contributed and wanted to be someone that could help a lot of people and accomplish something great that I’m truly passionate about.
And since then, and with the re-igniting force I feel after every flare-up, Crohn’s has propelled me in this direction: to challenge myself in ways I’ve only dreamed of and to push towards experiences that require a great deal of determination, strength and health.
Goals I’ve been able to achieve:
With this, some of my accomplishments have been obtaining a pre-medical science degree, becoming a yoga instructor, nutritionist and personal fitness trainer, accomplishing a 200km bicycle ride known as the Ride to Conquer Cancer (4 times), and being part of a 3-man relay team in the 125km ultramarathon race through the mountains called The Great Canadian Death Race.
“It is my experience that Crohn’s does not have to detour an individual from achieving their goals. Ashley is an example of how to turn something negative into something positive. She has embraced Crohn’s as a part of herself, and in doing so, Crohn’s has become a path to her achievements. “ – Mark Guarini, Ashley’s spouse
I’ve also found an increased interest in learning more about myself and my body, and finding a way to continue to do what I love now that I’m living with Crohns.
Paying it Forward: Being Inspired by Others & sharing their stories
Its not always a perfect world and it can be discouraging.
But I’m inspired by meeting others with Crohn’s, colitis and/or ostomies.
Sometimes I meet others that have experienced a lot more pain and struggle than me and it reminds me that I am not alone and what I think as the ‘worst ever experience’ may not be the case (though it may have definitely felt that way at the time!).
Family and friends are very important to me and having that support means everything to me.
Emotional support is really, really helpful.
There are periods where you feel like you want to give up, and somehow and sometimes there is something or someone that inspires you to push on, see through it, ‘keep breathing’ (like Tom hanks said in the movie, Castaway) and somehow turn it all around and live to the fullest potential.
I don’t know how it happens (having this ability to ‘push forward’ and carry on) and everytime it happens it’s somehow a different experience.
I believe in Crohn’s and colitis advocacy and awareness:
In order to change the social stigma’s associated with Crohn’s and colitis, and ostomies, I believe of our stories need to be told, shared and heard.
This is why I am an executive member of the Crohn’s and colitis patient advocacy group, Gut Inspired.
We share our experiences, our stories, our struggles and frustrations, our happy times and joys, we create education videos, we travel the world to raise awareness, and we organize events.
We’ve also created a patient manifesto, a document that summarizes what each and every one of us is entitled to and deserving of. Click here to check it out.
My website and the reason my husband and I started it:
When I was first diagnosed officially at Sick Kids Hospital in Toronto, Canada, the nurses there were amazing.
Funny enough at the end of the two weeks I was there I didn’t want to go home and when I was home I missed being there very much – and I know this was because of the amazing emotional support I felt from the nurses there.
They were my friends.
I would have loved to have received a booklet or one-stop-shop resource from my nurses teaching me more about my disease and how to connect with others living with Crohns who could offer tips and support for me.
I remember being so overwhelmed and at times am still overwhelmed with the diagnosis.
And when I went to look for information, I didn’t know where to look. There was information everywhere and products to ‘cure it overnight’ etc.
If a person has been diagnosed with Crohn’s, they can’t forget what they love to do (sports, travel, etc) and it’s important for them to learn how their body is working, what’s happening and, any lifestyle changes they could make that could help, such as nutrition and exercise.
There’s a lot of information out there, and some of it isn’t always right. I wanted to create a website with access to resources that I found helpful – especially real-life stories from real-life people living with Crohn’s, colitis and/or ostomies that share their wisdom, tips and contact information so that we can all support eachother as we find our own way.
It can be very easy to focus on the negative, but focusing on the positive is critical – it’s important to make a conscious choice to be positive.
Me as a Crohn’s Nutritionist:
As a nutritionist, I hope to touch other’s living with Crohn’s and to help inspire them to make the personal choice to change their lifestyle for the better, eat more consciously and in-tune with what their bodies are telling them, take time to rest and relax more, have fun, positively affirm daily “I’m worth it!” and “I’m a warrior!”, and to honour and love the skin they’re in.
“As a Crohn’s nutritionist, over the last 20 years I’ve tried nearly every diet out there that people have claimed remission of their Crohn’s or colitis by following a particular diet or lifestyle – Specific Carbohydrate Diet, GAPS diet, low FODMAP diet, anti-inflammatory diet, David Klein’s fruitarian diet, raw vegan, vegan, ketogenic, paleo, autoimmune paleo, juicing diet, blender diet, high-fiber diet, low-fiber diet, BRAT diet, Jordan Rubin’s The Maker’s diet, low residue diet…. I’ve always had a deep-seated feeling that nutrition and food could help a lot. Not a cure, but a way to put my Crohn’s into remission.” – Ashley Anderson
Connect with Me:
Pinterest: Tri Nutrition
Youtube: Tri Nutrition
Thanks Ash, as I’m sure you’ll agree: quite a story. Please do check out her and Mark’s blog. Thanks for reading people, have a great day!