There has been a huge mix of information of who should and should not be isolating, and most countries have jumped to action a lot quicker than the U.K. though I know people are supposed to start isolation today and over the weekend, particularly the vulnerable and over 70’s. But here’s why I haven’t fully isolated myself yet.
This week and some of next, I’ve had some really important doctors appointments at hospital that I’ve already been waiting months for. One was a discussion about medication for Crohn’s that was overdue, the second was a chat with a colorectal surgeon to check how my surgery site was doing and this was also overdue, and Thursday I had an imaging appointment to finally get my right arm scanned with ultrasound to find the reason I’m always in pain. Then next week I might be seeing my IBD Consultant who I have never met, and then a dietician but this one I might be able to move to a phone appointment.
All of these have been in the works or postponed by bad communication within the department and all super important to my health. I’ll be starting a new medication soon at home for my Crohn’s now I’ve met with everyone and they’ve all agreed it’s the best next step. We have finally found out what’s happening with my arm, all I will discuss in due course as I am awaiting the official letter that explains everything, but what I can say is it is a genetic thing and rare… typical me. And hopefully the dietician can help me work with my dietary restrictions to start leading a healthier life with food.
My experience going to these appointments has been pretty different to the usual. Most of the elderly staff who do the carting around of medical files and weight and do your blood pressure were not there, the number of patients lingering had dropped drastically, everyone was on time, there is really a low risk of contamination. Luckily the antibac dispensers still had gel in them, whereas I’ve seen London hospital shave been ravaged. Even the hospital car parks are half empty when it’s normally so difficult to find a space.
Now I will say, before anyone gets to heated about me going outside, I have taken precautions. I’ve avoided people or contact for the most part, washed my hands or used hand sanitizer, I have avoided touching doors or buttons, and kept my timing outside to a minimum.
It’s near impossible for everyone to stay inside, but as long as you are doing what you can to avoid contamination or possibly spreading the virus, and staying isolated if you have a suspected case! We are doing what we can.
Nutrition is a big part of having an IBD, whether you have trigger foods or are
struggling with malnourishment, it’s all important to learn what we can do for our bodies. Seeing a dietician/nutritionist through the NHS can be really hard, and seeing one privately costs money and you’re not always going to find someone who specialises in IBD. I’ve spoken with my friend Ash (from This Dreams Alive and Prickly Pineapples) who is a qualified nutritionist with a focus on plant based conclusions. I am personally a vegetarian and have a lactose intolerance, so these are things I wanted to know for myself because I find a lot of professionals are not equipped to work with me on this due to my restrictions. This post is helpful for everyone, even if you are a meat eater.
I asked what we can eat to help combat certain typical symptoms of an IBD, and this is what she came back with:
Fatigue:fatigue is often caused by low-iron so I’d recommend getting a blood test to make sure your iron levels are good before doing anything. Plant-based sources of iron are leafy greens like spinach and kale, lentils, chickpeas, tofu, seeds like chia seeds, flax seeds, and pumpkin seeds etc. Tomatoes themselves don’t have much iron but it adds up well when they’re concentrated in forms like tomato paste if you want to make pasta, pizza, or soup. The vitamin C content is also helpful for absorbing iron. Drinking tea and coffee with meals is a bad idea if you’re vegan or prone to anemia because the tannins inhibit the iron absorption so have them at least half an hour before or after eating an iron-rich meal. It can be harder to absorb plant-based sources of iron than animal-based sources, and you need to eat a lot to hit the RDA (and who is actually going to eat a whole bag of spinach) so you might have to consider a supplement. Foods with B-vitamins are good too because the B-vitamins help the body convert food into energy. It’s why bread is often fortified with B12! B’s are in hibiscus tea, watermelon, soy, sunflower seeds, sesame seeds, spirulina, tahini, mushrooms, rice bran, peanuts/peanut butter, and nutritional yeast. You can also try have more low GI foods that have a slower stable release of energy so you don’t crash, so brown starchy carbs like rice, pasta, and bread, oats, sweet potato etc.
Diarrhea & Constipation:people call the diet that helps with diarrhea the “BRAT” diet which stands for bananas, rice, applesauce, and toast. It basically just entails bland foods that are low in fiber. You don’t need to cut out all fiber if you have diarrhea because there’s actually two types of fiber; soluble and insoluble. Soluble fiber can’t be digested but it attracts water which can basically add bulk to stools, it also slows down digestion. It dissolves in the water in our bodies into a gel which basically lubricates your intestines. Soluble fiber is in flaxseeds, apples, carrots, sunflower seeds, oats, barley, hazelnuts. Insoluble fiber makes stools pass more quickly by speeding up digestion so it will help for constipation but not with diarrhea, so you might want to stay away from nuts and seeds, root vegetables like carrots and potatoes, celery, and whole grains.
Body pains:cherries are good for muscle pain, which is why concentrated cherry juice is kinda popular in fitness communities. When joint pain is caused by inflammation you can try ease with anti-inflammatory foods like most fruit such as blueberries, oranges, apples, tomatoes, and omega 3s like salmon, tuna, mackerel, cod liver oil, and algal or flaxseed oil for vegans. Algal oil is basically made from the algae fish eat which is where they get their omega 3. Stay away from processed foods and alcohol as they can trigger inflammation.
Sleep:CBD oil and teas can be good for sleep (and inflammation & pain) but they can be expensive so a cheaper way is to drink relaxing teas like chamomile and peppermint before bed (and not black or green tea because they have caffeine). Carbs can also help you sleep because they help boost serotonin and tryptophan, but it’s best to have it with protein. Although it sounds contradictory it’s actually high GI carbs that help you sleep. You could have whole-grain crackers and a handful of nuts or a sugar-free cereal.
Hair-loss:biotin is popular in hair, skin, and nail supplements because it helps with keratin production which is what our hair is. If you don’t want supplements, almonds, cauliflower, mushrooms, spinach, sweet potatoes, avocado, bananas, and oats have it too. Biotin is a B vitamin so eating these might also help with fatigue. Omega 3s will help your hair look shinier and stronger too.
I then asked her what she would recommend for the typical vitamins a lots of us can become deficient in. It’s known to be best to get the vitamins and minerals from a food source rather than a tablet, so it’s always best to do this if you can but for more serious cases you should be consulting a doctor as I know we can get iron tablets and infusions as well as B injections.
Potassium:potassium is actually really common to be deficient in! It’s in bananas, coconut water, spinach, broccoli, potatoes, mushrooms, peas, and sweet potatoes. Licorice can actually affect potassium so if you drink licorice tea, but have low potassium, then you might want to drink another, like peppermint.
B12 is the one vegans get a lot of shit over, it’s in nutritional yeast, and most bread and dairy alternatives are fortified with it, apparently, scientists also found it in water lentils which is exciting and means it’s technically no longer only naturally available in animal products. The reason it’s only in animal products is because cows eat grass, and the soil with it, but we wash vegetables so thoroughly (and should because germs) that there’s nothing left, so getting it from animal products is getting secondhand b12.
B6 is also often in nutritional yeast and fortified bread and milk, but it’s also in corn, avocado, sunflower seeds, hazelnuts, tahini, oranges, and quinoa. Quinoa [and soy] are the only non-animal-based protein with all the essential amino acids, so if you feel weak it could be because you’re not getting all your amino acids on a plant-based diet. A lot of vegans don’t have quinoa and soy, so you need to mix protein sources like pairing hummus on pitta bread and beans on toast.
C Vitamins:sources of vitamin C are broccoli, pineapples, brussel sprouts, kiwi, peppers, oranges, spinach, strawberries, kale, mint, lemon, and tomatoes. If you’re gonna hop on the lemon water trend, you need a whole lemon to get around a half of the RDA of vitamin C, lemon water is a little help but not a huge one if you only put in a few drops.
D Vitamins:D vitamins are hard to naturally get on a vegan diet, so they’re mostly in fortified foods like milks, cereals, and bread but it’s also in mushrooms, and orange juice is often fortified with it too. If you can’t get it from sunshine or food then you might be able to look into light therapy that people with SAD use.
What’s important to remember is that plant-based sources of these foods are often lower than animal sources and can be tricker to absorb. This doesn’t mean that you can’t be healthy on a vegan diet, you just need to eat a lot more of these kinds of foods to make sure you’re getting enough. If you’re gonna take supplements, speak to your GP or a dietitian first rather than guessing because you can make yourself sick if you take a supplement you don’t actually need and basically OD on vitamins.
I found Ash’s answers really helpful in starting to understand what vitamins do and where we can get them from. I hope this is helpful for others in a similar predicament but also people generally interested in bettering their nutrition through plant based options. I’d love to hear what you think and if you learned anything new, leave a comment and I’m sure both myself and Ash will be really excited to read!
UPDATE: Since collaborating on this post together, Ash has written a post on Nightshade vegetables and inflammatory responses do to me asking some questions on the topic. I see a lot of sensationalised ‘information’ about food that I find hard to believe (because there is no science behind it 90% of the time) and Ash put some effort in to researching and putting the infor all in one place on this topic and where these rumours start from.
Check out Ash’s content here! I collaborated with her on a post for her blog with a link to having an IBD, I hope you go and have a read of that too!
I have a YouTube video on some tips for people newly diagnosed with IBDs (Crohn’s and Colitis) and things to test and try to find something that works for you. No one thing will work for everyone. I’ve also talked about my trip to A&E with Erythema Nodosum caused by a Crohn’s flare on both the blog and my channel. I have also done a selection of videos discussing my diet and showing you what I eat in a day etc. I recommend checking out my channel for a lot more of my Chronic Illness content.
Also I recommend this post for anyone struggling to talk about their IBD and come to terms with it, by Zipporah Arielle for Human Parts.
I don’t often talk about my spiritual side on here, only on the odd occasion like this blog post! But I’ve not had any kind of surgery since I was 2 years old and I had my tonsils removed! So I had a lot of anxiety going in for this (also a lot of waiting around that holding on and fiddling with something helps) and was prepared to dip back into my spiritual side. I asked some of my online friends for suggestions and these were the three I decided on!
The properties of this stone are: peace, healing, calming, reassuring.
It speaks directly to the heart chakra helping to dissolve emotional wounds and fears, I have a lot of medical trauma to do with needles so this was important for me to help reduce my fear. It’s a good crystal to use in emotional crisis.
The properties: protection, harmony, good luck.
This stone prevents harm from coming to it’s beholder, again perfect for surgery as I was worried about things going wrong. I am also always in need of good luck. It helps sooth the mind and release negative thoughts.
The properties: blood cleansing, general cleansing, powerful healing, protection,
This is also a stone for healing, protection and calming. It also helps in adjusting to unforeseen circumstances, as we weren’t aware I needed surgery until the last minute and weren’t sure if or when it would happen. And it helps with irritability, aggressiveness and impatience, all of which I needed as I have mood instability and was also sat waiting for hours multiple times. It’s also ideal for anaemia (which I have mildly thanks to Crohn’s) and supports blood flow and circulation. Apparently also reduces the formation of puss (very specific but always helpful after a surgery!) and helps to heal inflammation and infections.
This post in no way is telling you to use holistic approaches INSTEAD OF scientifically proved medicine. This is a post on how it can be used as an emotional and mental aid through some tough times. I am an advocate for seeking out professional help rather than alternative therapies, but I see no harm in doing both.
I saw and responded to a tweet about #thecostofbeingdisabled and I just wanted to turn my thread into a more detailed blog post. I want to show people (both able bodied and disabled) what I go through personally, because none of us are the same. My list wont be the same as another disabled or chronically ill person’s but there will be many overlapping experiences. I wanted to write this and create solidarity among disabled and chronically ill people. Share what you go through.
restricted diet: branded vegan or free-from foods are more expensive. replacements for milk and butter are often more expensive whether it’s lactose-free or a plant-based replacement.
extra vitamins and medication: to make sure I do not become deficient due to my gut health and restrictive diet. Turmeric for inflammation, coconut oil tablets for healthy fats, vit c to boost immune system that I don’t have, multi vitamin, magnesium as it is in most inner body functions and many people are found to be deficient. I currently take something like 10 different supplements. I also pay a lot for paracetamol and rennies (deflatines) to help with pain and bloating, and before fully giving up lactose I used to buy lactase enzymes too. These can cost anywhere from £3 to £20 a packet or bottle.
Homeopathic: balms and oils for pain relief and help migraines(£3-£5), CBD products(£5+ depending on item), sports injury products and supports, k tape, chinese medicines and patches. Massage therapists, chiropractors, osteopaths, acupuncture, because NHS staff are no longer hands-on and to get some immediate pain relief and relaxation you must go private. They are anywhere from £10 to £60 depending on what they do and length of time.
Walking aids: different walking sticks to suit occasions, I have a nicer looking one for nicer occasions(£20), I have a couple of fold up ones in case I may need it later in a long day or travelling, gifted to me by family. Driving everywhere as public transport isn’t always accessible, driving to many doctors and hospital appointments, support groups etc. to fill my tank is £60. Heel pads/insoles in my shoes and having to spend more on better quality shoes. I also have been told to buy gel heel pads for my Plantar Fasciitis.
Having a backpack full of ‘just in case’ supplies. Gives me a bad back but I often need everything in it.
Using a heater at weird times of the year because my body temperature is a struggle. Bad circulation in hands and feet and often need heat pads, hot water bottles, electric blanket to warm up. Getting night sweats, needing to turn heating up or fans on to try and neutralise this.
Glasses with screen protect gloss or sunglasses because my eyes are sensitive to light and can have migraines. These often come at an extra price and not really packaged in. Also just needing to get my prescription updated more often than most people, losing glasses so ending up with many pairs that all need updating even if they are the spare pairs. Contact lenses too, you can’t take back and get money off for unused contacts, that’s something they should look into coz I have loads the wrong prescription and can’t really use.
Toilet roll, water costs, and baby wipes and other single use items like cotton balls or pads. Washing underwear a lot or regularly replacing it from having crohn’s. I now have Adalimumab injections that often require a cotton ball to soak up the slight bleeding after. More focus on oral/dental health as this is often the first place for bacteria and infection, so electric toothbrush heads and floss are important.
Testing different at home equipment that may or may not help for the hope of some pain relief. Memory foam pillow and mattress, many pillows. The possibility of replacing the mattress more regularly because you spend a lot of time in bed, in the same position.
Brain fog: notebooks for writing notes and lists for myself and others to try and prevent forgetting to do or tell someone something. Having multiple because I lose them.
Paperwork Organiser: files of all shapes and kinds and colours with labels so I know what is where.
Buying self help books: mental health guides, therapy guides, memoirs or biographies about people who have dealt with similar health conditions so we feel less alone and more educated. Books vary in cost from pennies second hand to £30.
Buying other products suggested to help something going on with you because you’re so desperate. After having Erythema Nodosum, I had discolouration all up my legs and on my elbows that looked like bruises. I used caster oil with lavender oil on them regularly as these are meant to be a natural lightener. To be fair… I think it kinda worked. My legs are looking nearly entirely back to pre-Nodosum.
Needing some kind of home staff like my family personally have a cleaner (some people have an need personal assistants which have slightly different job roles etc.) because I cannot change my bed sheets or regularly clean any part of the house it will always be a half done job and wipe my energy levels out entirely so a cleaner for a few hours once a week has been a game changer for me and my family.
Emotional and social costs:
Not being able to just go and enjoy a meal out or at a friend’s house.
Losing use of my dominant arm, stopping me from being able to type, write, wash myself, cut food, feed myself, opening bottles or jars, swimming, exercising in general.
Not being able to live alone. Needing someone to care for you, make sure you are fed because you cannot cook for yourself often. Helping you keep clean and keeping your rooms and clothes clean, because changing a double bed is a lot harder than you think. Also I don’t receive enough money from PIP to live alone and don’t make enough from any of my money earning ventures to cover those costs.
Never knowing if your symptom is normal, part of something you already have, a cold or the flu, or something else entirely. Always stressed about what these could be or what could happen.
Never knowing if or when it will get worse and what ‘worse’ means next time.
Trying to buy accessible/disabled ticket for gigs and events can be really difficult or nonexistent. Wasting many hours chasing people, researching, making phone calls, just so you can try and comfortably enjoy an outing. (Me, crying about not getting MCR tickets because the phone line didn’t actually work for ages I was on that phone for several hours before I got a ticket and a carer ticket)
The anxiety of having to be reassessed for PIP! This is awful to go through and you have to keep going through it even though most people on PIP have chronic conditions that will never be cured and are very unlikely going to get better. But they put you through it every few years and often deny you, make up absolute shit, and deny you it and you have to appeal and wait even longer and go through even more stress!
Your version of the future changes with each new symptom and condition.
Medications and illnesses causing physical changes like weight gain or loss, acne or facial inflammation, the bruise discolouration I had on my legs, hair loss, teeth problems, etc. making it difficult to feel good in yourself.
This list will vary with each person. This list is also probably incomplete because it is impossible to remember everything that you’ve lost or sacrificed especially when you want to focus on maintaining the level of health you currently have. There are people who would wish their disability or illness away, and there are people who wouldn’t, and both of those are valid and acceptable. Not everyone is the same, but able bodied people often don’t see what disabled and chronically ill people go through on the daily. I just want to help open some eyes.