I thought I’d kick off this section with some reflections and advice on body image and Crohn’s. Despite being labelled an “invisible illness”, Crohn’s Disease can have a lot of aesthetic implications. Some of these can be hard to handle on a physical and emotional level, with many patients experiencing low self-esteem. But it’s important to note that we shouldn’t feel ashamed or embarrassed when our disease takes its toll on our bodies, it’s all part of the ride after all. Below are some physical side effects I’ve experienced and how I’ve dealt with them, along with some advice and product recommendations for you other Crohnies out there! (Though bear in mind, this is not a substitute for the opinion of a medical professional!)
Skin
I for one have experienced my fair share of skin problems, most notably after starting the biological drug infliximab. My skin became increasingly dry. My face, scalp and ears were all severely affected, my ears so much so that where they join my scalp was entirely inflamed and tearing. I eventually had to be referred to a dermatologist. I was prescribed several topical steroid creams which enabled me to take back control of my skin and dare I say, re-attach my ears! If you’re having similar issues, I would definitely recommend seeing a dermatologist and inquiring about treatments like this. After finishing the course of cream, I was advised to try the Aveeno daily moisturising lotion and I’ve never looked back. I still use it every night before bed and it’s brilliant! It can be a bit heavy on the pores in the summer, but once a day on my face and around my ears is enough to keep my skin in remission. In fact, the thick, creamy texture is what I love about it, unlike a lot of other moisturisers on the market which leave a film of oil across your skin without really treating the dryness underneath. I also use Garnier Ultimate Blends Oat Milk Shampoo for sensitive scalps as well as the matching conditioner, and I find this more or less keeps my dandruff at bay. As for my face wash, I like using the Simple Micellar Facial Gel Wash twice a day and a gentle oat exfoliator every other day- both of which leave my face feeling super soft!
I am also always careful in the shower/ bath to not have the water too hot, as I find that I get heat rash relatively easily given my sensitive skin. I also have patchy rosacea and find that the cool water and air drying my skin (rather than rubbing it with a towel) really helps prevent this from flaring. Crohn’s has also made me significantly paler than I was before, notably given my iron deficient anaemia. Unfortunately, if you’ve read my other posts you’ll know that I am severely allergic to IV iron and unable to tolerate iron tablets (they are known for aggravating gastro-related issues, so if you are considering this, proceed with caution). So, naturally there isn’t a lot I can do about that one! I’ve learned to simply embrace my paleness and it’s become somewhat of a trademark (along with my blue eyes!) I would say though that it’s important for Crohn’s patients to wear an SPF, especially when going out in direct sunlight. Us Crohnies are prone to hell and all, and skin is a very vulnerable part of the body. Use one which has the strongest SPF, UVA and UVB rating out there- I use Soltan’s Protect and Moisturise Lotion SPF50+ and I re-apply every few hours in the summer. I’ve found this to be less oily and far more effective at preventing sun burn than all other sun lotions I’ve tried.
Bloating
Now this one has been a major issue for me since diagnosis. Underweight and in a flare, eating loads, on a liquid diet- you name it, I still look like I’m having twins. I’ve tried adjusting my diet, doing yoga, exercising more, taking charcoal pills and various probiotics, but nothing seems to work for me. I’ve found that symptoms like this really take a back seat in appointments, but I guess there’s a reason: that feeling well is obviously what matters most. If you’re anything like me, after going through a prolonged flare and feeling like death warmed up, when things start to improve, you don’t necessarily care too much about which top to wear with those new jeans. I’ve found that wearing what I like and what makes me feel comfortable is the way to go. I tend to opt for high-waisted bottoms which are not only flattering, but also easy on the stomach, and cami-style tops or split hem jumpers that aren’t too tight around my mid-riff. But to be honest, I’ve found that no one really notices my bloating but me. Even if I have the odd day where I think “you know what, I’m going to wear that tight dress and look like a million dollars and I don’t care about how big my belly looks!”, I’ll make a joke about it to a friend and they’ll say that they’d never even noticed and were jealous of how skinny they thought I looked. I suppose that sums up life nowadays, everyone is so consumed by their own insecurities that they’re too busy to pick up on yours. If you feel confident in your own skin, chances are people will simply see you as just that.
Hair and nails
Ever had cracked nails? This certainly isn’t limited to Crohn’s (as many of these aren’t) but may be worsened because of it. I’ve found that taking a simple daily calcium and vitamin D supplement really helps my nails to grow strong and avoid cracking at the tips. As for hair, its something that makes us feel confident, especially for women, so it can be really challenging when our hair doesn’t cooperate. As we speak I am currently going through the worst flare up I’ve had since diagnosis and my hair has really paid the price. I’d always had really long, relatively thick, wavy hair that was very obedient when it came to styling, but when I started Humira (adalimumab) last summer, I started to notice my hair really losing its vigour. It looked flat and dry, but more concerningly, it started to fall out. Now I’m talking major clumps coming out in the shower, when I brushed my hair, even when I just moved it around my neck during the day. And given the long period of this flare and the numerous general anaesthetics I’ve had this year, its only gotten worse. My once voluminous hair has quickly become thin and limp. Along with the above shampoo/ conditioner, I make sure I use a heat protectant when styling my hair with heat- the John Frieda Frizz-Ease Heat Defeat Protecting Spray is particularly good. But most of the time I try to avoid heating or blow-drying it. I also cut a few inches off my hair to get rid of the split ends and sometimes use a moisturising hair mask as part of my shower routine. Other than that, a general multi-vitamin is useful for restoring some goodness if your hair is suffering, as well as just generally being gentle with towels/ brushes. You could even try out a coloured dry shampoo like Batiste if you’ve got any obvious bald patches.
Oral
Now this one may sound a little strange, but I’ve had plenty of issues when it comes to my mouth. First of all, there’s mouth ulcers, a common symptom of flaring Crohn’s. In fact, even when in remission, I sometimes get them sporadically. The best thing to do is simply leave them alone. I know they’re frustrating little buggers and make your mouth feel sore, but drugstore treatments haven’t been too successful for me and literally leave a bad taste in my mouth from the chemicals. I would just advise you to avoid any foods that are super acidic or salty i.e. crisps, as boy does it make them sting!
Then we have teeth. How could Crohn’s possibly affect your teeth, you ask? Well, I’ll enlighten you. When I was first diagnosed, my mum thought it would be a good idea to start buying special toothpaste (it was aloe based) that didn’t contain any fluoride- this is an ingredient which can cause inflammation in the gums. It made sense at the time. But in recent years my teeth began to, for want of a better word, rot. And I know what you’re thinking: “you probably just drank lots of coke or ate lots of sugar”. Wrong. Given my restricted diet, I honestly couldn’t say I’d eaten anything that could have caused it. And before you think anything else, I’ve never smoked a cigarette or drank alcohol in my life. My dentist explained that my body’s general failure to do anything right may be causing my enamel to erode abnormally and the fact that I’d not been using a toothpaste with fluoride in it had ironically left my teeth vulnerable, as this is the main ingredient that protects the outer layer of your teeth. And although I wasn’t a particularly toothy smiler, I got my teeth all fixed up with surface fillings and now they’re as good as new… for now at least. It’s likely that I’ll need to have them re-done in the future, but one step at a time! So, as a piece of advice, use a toothpaste with fluoride in unless your doctor/ dentist tells you otherwise. Just don’t swallow it obviously.
And finally, there’s tongues. As I am currently on an exclusive liquid diet, I am having a case of “coated tongue”. Doing a liquid diet and not eating alters the bacteria on the tongue, meaning that it may appear to have a thick, white gooey coating. Lovely, I know. But not to worry, its totally normal and should sort itself out once you’re eating again. Just make sure that you keep it as clean as you can. And if it doesn’t rectify itself once you’re back on a normal diet, it may be a sign of a yeast infection, in which case a trip to the GP would be the way to go.
Body shape and “moon face”
Now for once I actually didn’t experience moon face during any of my many steroids courses, but I do know how debilitating it can feel. Magician Dynamo a.k.a. Steven Frayne caused a storm last year when, after being criticised for putting on weight, he posted a video of himself online, swollen face and all, as a result of taking steroids for his disease. I really admired him for that. Crohn’s is such an underrepresented and misunderstood illness. People are so quick to judge, especially if it seems like you’ve put weight on. But the reality is that these medicines can be lifesaving and their unfortunate side effects are part of the deal. If you’re experiencing something similar, just remember that you’re on this medication for a reason and that it won’t be forever. Steroids are only used temporarily and if they work for you, I guarantee it will be worth it.
In terms of body shape more generally, Crohn’s patients are greatly susceptible to comments about their weight. If we’ve lost weight due to a flare, we are labelled as anorexic, but if we put weight on again we are accused of having “let ourselves go”. We just can’t seem to win. I myself have been subject to many well-meant but ignorant comments about my weight.
I have always been slim as most of my family are, my average “healthy” weight being around 8 ½ stone. When I first got ill, people at school suspected I was anorexic. But kids will be kids. Yet, it isn’t just kids who make these remarks. Earlier this year, after having 5 months of extreme diarrhoea and vomiting which caused me to lose over a stone (which put my BMI in the unhealthy, underweight category), one of the nurses doing my MRI thought it was a good idea to say “ah that’s good, you’re so nice and slim” as my frail body climbed onto the scanning bed. A month later I’d lost even more weight and one of the nurses on the gastro ward commented on how she wished she looked as slim as I did. I felt like saying “just get severe diarrhoea for 5 months, vomit constantly and starve sporadically to make car journeys and you’ll get there.” Who would have thought that even those in the medical world who are supposed to be sympathetic still wouldn’t understand.
Living with Crohn’s can be a rollercoaster and inevitably, depending on our symptoms, our weight is likely to change quite a lot. This can be frustrating if you look at the situation and think: “man, nothing I own fits me”. But I personally prefer to think: “nothing I own fits me… what a great excuse to buy a bunch of new clothes!”. The glass should always be half full. Again, just wear what makes you feel comfortable. If that’s tight dresses and heels, then great! Good for you. But if its sweatpants and a jumper, that’s equally okay. I’ve found that keeping some loose “flare clothes” handy is a smart move (no one wants to wear skinny jeans when they’re in a relapse…). But most importantly, I do my best to look after my body and own the fact that it will go through periods of change.
Infections
People with Crohn’s, particularly those on biologics or immunomodulators, have suppressed immune systems which make them very vulnerable to catching opportunistic infections. These can pop up seemingly out of nowhere and can be a real bother. A couple of years ago after starting biological therapy in combination with an immunomodulator, I started getting verrucas on one of my feet and they’re notoriously difficult to get rid of. Luckily this one isn’t too obvious to those around you (unless they’re getting up close and personal with your feet…) but its important not to let these spread- to other people, and to other areas of your own skin. Drugstore gel treatments can be effective in the long term and pumicing the surface before applying any treatment helps it work more effectively. Just make sure you don’t contaminate the surrounding healthy skin!
More visible than verrucas is warts. Yes, those lovely lumps that can grow on your fingers and hands (and numerous other places!). I developed warts on my fingers whilst on immunosuppressing medication and became quite embarrassed about them when I started university. A crucial tip is not to pick at them, it makes them grow even more. I tended to treat them with a light acidic gel which was prescribed to me by my gastroenterologist and wrapped them tightly with breathable and waterproof skin coloured plasters- that way a convenient story about me “burning myself whilst cooking” would suffice to explain!
Scars and bruising
Here’s something a lot of people can relate to. Whether it be large scars from surgery or simply long-lasting and horrific looking bruises from cannulas/ blood tests (I don’t know about anyone else, but it seems to take me several weeks to get rid of a bruise and one pin prick looks like a zombie bite), visible marks on the body can make people feel judged. But its important to think about what those marks mean. Do they make you weak? Far from it. They are symbols of your resilience, battle wounds if you will. Sport them with pride! Just take your time, that’s all. Make sure that you’re in a good mental state and have recovered from whatever you went through emotionally. And hopefully you’ll reach a point when you can love them, and this confidence will radiate from you.
It took me a while to feel this way about my legs. Not your typical scar perhaps, but it took months on end for my erythema nodosum to calm down, and even when my mobility improved and I got the okay to join in with P.E again, my legs were purply red and “bruised” looking all over. I wasn’t about to go out on the field in a pair of skimpy shorts with a bunch of model-esque sporty girls like that! So, it took time, but soon they began to heal. I wore tights for the first time, then nude tights and then eventually, I went bare legged. I still have a large orange looking patch on the back of my left leg (I have no idea why this area didn’t heal like the rest). But to be honest, I generally don’t even remember it’s there, and I certainly don’t factor that into what I’m wearing. Because its me. I look at my body and all the imperfections remind of the things I’ve gone through and I feel humbled to have come out the other side. So, certainly go at your own pace, but remember that every part of you is worth loving, scars and all.
Feeding tubes, stomas, setons…
Now we’re right down to the nitty gritty. I have never had a feeding tube, nor a stoma. But as I sit writing this post I am uncertain as to what my near future holds; one strong possibility is a stoma. I of course have my worries about living with one, but I’ve gained so much confidence by watching youtubers and reading other people’s blogs about their experiences. It makes you realise that you aren’t alone. Of course, there are again ways of hiding a stoma- whether that be loose clothing or a support belt or high waisted bottoms, but at the end of the day a stoma is a part of you that deserves to be embraced and shown should to choose to show it. So many (albeit not all) people with a stoma have had such bad symptoms that having surgery was their really only chance at getting their life back. And I for one don’t look at anyone with a stoma, or feeding tube for that matter, and feel sorry for them. I just think “you do you”. Sure, all these things are a big adjustment, there’s no denying that. But if you’re about to embark on a journey that involves one of these adjustments, you’ll get through it and adapt. And soon you’ll be living life with the best of them.
I’d like to think I live by those principles. I had surgery a few weeks ago (the second time lucky!) to drain an abscess linked to complex fistulae. I am now the proud owner (or should I say wearer?) of a seton. This is basically a loop stitch that goes through the length of the main fistula tract and I’ll have it indefinitely. At first I was a little insecure about it, but now it just seems like a part of me, a cool accessory even. And if I ever have a little wobble in confidence, I remind myself that it’s serving a purpose and that I shouldn’t feel bad about it in the slightest. After all, everyone has something to deal with in life, it just so happens that mine is my Crohn’s and the more I embrace and accept it without bitterness, the happier life is.
Me and My Crohn's 