My Crohns’s journey
I was diagnosed with Crohn’s in March 2017 38 years old. Before that, I had been a super fit fitness instructor and PT, outgoing, living life to the max happy go lucky gal with no health worries.
In November 2016, my dentist suggested I get some blood tests done because I had a few ulcers. He thought it was probably a mineral deficiency but to get checked just in case. At this time, I also had an issue at my tail end that I thought was piles.
I went to the doctor, who ran some blood tests and said I was likely someone who just got ulcers. That there was no connection between my mouth and tail end (which I thought was weird. At uni, I studied anatomy and physiology and the digestive tract, and I knew that we were talking about the start and end of the digestive tract – but I didn’t have the confidence to challenge him on it because he’s the doctor). The blood tests returned ‘normal’, and he sent me away. I felt dismissed and that I had to work this out on my own.
Over the next couple of months, things got progressively worse. I tried every kind of ulcer remedy and mouthwash if anything made things worse. By the beginning of February, the pain at my tail end was so painful I was getting shooting pains every time I went over a bump in the road or moved too quickly. I was going to the toilet often and losing weight – not ideal in my line of work. I went back to the Dr, and this time I got the manager of the practice. Within minutes of conversation, he told me he thought I had IBD. I didn’t know what it was, and when I went away and looked it up, I thought he was wrong. No one else in my family has IBD. I eat many whole foods and exercise regularly (in hindsight, too much)… but he ordered many tests. When the calprotectin returned, it was +1800 (bowel inflammatory markers) and CRP +200 (blood inflammatory markers). I was referred for an emergency colonoscopy, confirming I had severe Crohn’s colitis.
I was put on high-dose prednisolone and started on other immune-suppressing meds. I have had many severe reactions to the medications and worked through prednisolone, budesonide, infliximab, azathioprine, mercaptopurine, and adalimumab. I was then moved onto biologicals vedolizumab – which worked for a while, then stopped working, and I started having bad side effects… I am now on ustekinumab which seems to be working. Although I still have some symptoms, which might be endometriosis, I am waiting on an appointment at gynaecology (which I have been told could be 18 months on the waiting list). And I am perimenopausal… a lot is going on!
I requested to be referred to the Centre of Integrative Care at Gartnavel Hospital. After a 5-month wait on their waiting list, I have a doctor there who has been amazing, and we are working with homoeopathy medicines to manage symptoms. Integrative care looks at you holistically and uses lifestyle practices and alternative therapies to help with chronic conditions. Holistic care and alternative therapies fit my way of life and values.
IBD doesn’t just affect the bowel. Everything in your body is connected.
Symptoms I have experienced
Ulcers in mouth, throat, colon
Loss of appetite
Weight loss (I have lost 20KG in really bad flares)
Sweets Syndrome (ulcerated lumps on the skin)
Joint pain & Swelling
Uveitis (inflammation of the middle layer of the eye)
Episcleritis (inflammation of the surface layer of the eye)
Erythema Nodosum (inflammation of the layer under the skin)
Muscle pain & weakness
Panic attacks (physiological symptoms rather than psychological)
Sound and smell sensitivity
Pain in the bowel that feels like it’s on fire
Anxiety & depression
In the flares (I have had three big flares), I would be experiencing that list simultaneously.
I am very fortunate that my partner has been exceptional; we were only together about six months when I got diagnosed – he has had to lift me to the toilet and wash and dress me at times. When I was admitted to the hospital in March 2022, I came home to him having moved our bedroom downstairs so I could be close to the toilet.
Living through this has been tough. There are people I considered friends who distanced themselves and others who stepped up and have been there for me beyond expectation.
I am very grateful that I came across the Catherine McEwan Foundation in September 2022 when they launched their mental health support. In December 2022 I had some therapy sessions with Avril, which has helped me work through the anger and frustration I felt with myself and the world at large and be in a place of acceptance (which I didn’t think was possible before working with her).
Being diagnosed with Crohn’s filled me with shame at first. Here I was, someone teaching other people how to live a healthy lifestyle and better manage their health, and then I get diagnosed with a chronic health condition. I have searched and researched; why me? What did I get wrong? Could I have prevented this? There are many things that could have contributed to my getting sick. There isn’t anything I can do about it now other than practice what I preach; prioritise my health, listen to my body, rest more, move in a way that feels good today, be present with myself, get out in nature, use my herbal remedies and get connected with people that bring me joy.