Crohn’s disease is a lifelong condition in which parts of the digestive system becomes inflamed. It’s one type of a condition referred to as IBD (inflammatory bowel disease) where sufferers can dramatically lose weight and be in crippling pain for long periods of time. Although with specific medical treatment, sufferers are able to control most side effects, however, the unpredictability of this disease can mean that living with this condition is extremely physically and mentally draining.
In this month’s 'Life Stories' we spoke to the warrior who is 22 year old Eli Brecher, as she talks through her personal journey living with Crohn’s, the struggles, judgment and positive experiences that have come with it.
Tell me about your journey with Crohn’s disease?
When I was 8 years old, I started having stomach aches after every meal and I was tired all the time. After various investigations, I was diagnosed with Crohn’s. For the next 3 months, I was put on a liquid-only diet of nutritionally-complete drinks to let my digestive system rest and repair itself, as well as a cocktail of medication. When I was eventually allowed to eat again, I had to exclude most major food groups for a while, including dairy, gluten, eggs, nuts and soya.
I have been fortunate enough to find treatments that help me manage my Crohn’s and am currently in remission. However, it hasn’t all been smooth sailing, and flare-ups tend to happen at the worst of times – always around exam season, as it is heavily triggered by stress.
What are the daily challenges if any?
I try not to let it get in the way of leading a completely normal life and I’m generally full of energy and love being busy all the time. However, it is an ongoing battle (even in remission) as there is so much to do to keep things at bay, including weekly injections, regular blood tests, scans and appointments. I can get overwhelming fatigue during a flare-up, which is challenging to explain because it can’t be solved by simply going to bed an hour earlier, or having a coffee… – it’s a lot more complicated than that.
What have been the most challenging symptoms you’ve experienced with Crohn’s?
Besides from severe abdominal pain, what I find most challenging is the frustration of being in the middle of a flare-up and not being able to do simple things such as go for a run, or go out for dinner with friends, due to the chronic fatigue which comes and goes.
What did your liquid only diet taste like and consist of? Did it take a lot of willpower to stick to? Did it affect your social life?
As an 8-year-old, I didn’t have much of a choice and I understood the importance of sticking to it, but I did find it very overwhelming. The drinks tasted horrible and sickly sweet due to all the sugar the artificial sweeteners used to drown out the flavour! I had to repeat the liquid diet for a few weeks around my A-Levels and it definitely had an impact on my social life since I couldn’t go to restaurants with friends – or if I did I’d have to order a glass of water.
What foods do you personally find trigger symptoms or cause flare-ups?
I’m intolerant to gluten and dairy and feel better when I avoid red meat and refined sugar too, all of which are known to increase inflammation. I also try to include natural supplements where possible, include probiotics, fish oil, aloe vera and turmeric to name just a few.
Did this impact your childhood growing up?
To put it simply, yes – but not in an obvious way. I used to be very self-conscious about it and didn’t want to be “different” so tried my best to hide it from most of my friends, but I couldn’t avoid taking time off school for appointments almost every week. I was in the hospital with a flare-up during my AS Levels so I had to take them the following year whilst doing my A2 exams. The dietary restrictions definitely affected me too – although I quickly got used to saying no to ice-cream, chocolate and cake, among other things.
Does anyone comment or not understand the importance of your dietary choices?
I’ve got used to it and most of my friends are very understanding. However, people often urge me to have “just one slice” of pizza or make insensitive comments. For example, if I don’t touch the bread basket in a restaurant – “Why aren’t you eating carbs? Are you on a diet? You don’t need to lose any more weight”.
Do you receive any other medical treatment other than your weekly injections and have there been any side effects from these? Will this be lifelong?
Since being diagnosed 14 years ago, I’ve tried more medical treatments than I can count, including anti-inflammatories, antibiotics, immuno-suppressants (which weaken your immune system), steroids, biological drugs in the form of IV infusions, weekly injections and lots of pills. I’ve also tried several homoeopathic remedies such as acupuncture. For the first time ever, I am “only” taking one medication (in the past I’ve been on 5 or 6 at a time), so this is a huge success for me and I’m hoping to one day be medication-free, although if it’s what I need to keep me in remission for now then there’s nothing wrong with that.
What are the most misunderstood & frustrating comments people have said to you or people you know with IBD?
“You don’t look sick” / “You look fine to me!” Even if this is meant as a compliment, it can seriously undermine the pain and struggle that someone with a chronic illness is going through. If you could see my insides, you wouldn’t be saying that!
How do you think people who are close to Crohn’s sufferers can help?
Do your research so you understand what we’re going through, but don’t treat us any differently. At the same time, make us feel like we can talk about it. There’s nothing worse than feeling like you need to hide it – I went through this until I was about 18 when I finally realised how important it is to be open.
Do you think that there is any miscommunicated information on social media in regards to what Crohn’s is and the effects it has on its sufferers?
Definitely! Crohn’s is a type of Inflammatory Bowel Disease (IBD) but is often confused with IBS (Irritable Bowel Syndrome). The two conditions are very different – unlike Crohn’s (IBD), IBS does not cause any actual inflammation/ulcers to the intestines, whereas IBD can have debilitating symptoms and can also lead to all sorts of severe complications.
I also think there’s a big lack of awareness about “invisible illnesses” like Crohn’s, where the person suffering will probably look healthy on the outside. At the other end of the spectrum, it is also important to realise that people with Crohn’s are often able to maintain remission for many years at a time.
What top piece of advice would you give to anyone in a similar situation as yourself?
Remember that although it’s a part of your life, you are so much more than your health – so don’t let it hold you back from going after anything you want! My key tip is to avoid stress. Of course, this is easier said than done, but look for ways to help you feel calmer – I have been doing yoga for the last 6 years and found that it always leaves me in a relaxed and positive mindset.
Finally, do your bit – educate yourself, raise awareness and get involved with charity campaigns.