"So my skin pigmentation is changing, this will be my 3rd side effect from remicade / infliximab …"
That moment when you realize you physically can’t leave the bathroom and you aren’t at home.
Worst feeling ever
Whether its a chronic illness or an infection which just won’t budge, feeling like you’re broken is hard to cope with.
*** This post is not meant for those who are in-patients staying at a hospital, its for those at home living their daily lives with sickness ***
You can be suffering from an invisible illness or living with a very visible one, having that extra obstacle in the way of doing your daily routine can be depressing, stressful and make you feel like you’re just broken.
We have to push, we have to stay strong to survive. You need to keep studying, working or carrying out your day to day duties not to fall behind. You might need to re-jig your schedule a little but it is possible, you can do it.
- Know your limits, know when you need to take half an hour or even half a day to rest and rejuvenate.
- Know when you should call the doctor and get the right medicine you may need to fight that infection or help ease that pain.
- Carry around some emergency care that will give you that help to stay at work or keep on studying.
Carrying an “on the go” care package can be essential for you. You can make this as personal and individual you need. Things you might want to include can be - hand warmers, microwave hot water bottle (or a mini real one) some pain meds or creams ect…The idea is to have “tools” that will fit into your bag, that are not so heavy and don’t take up all of the room.
(i found some of these mini hot water bottles for 2.99 !)
Listen to your body, know your strengths and your weaknesses. know how to attack a nagging ache, pain, infection or rash.
Stay well and..
do ya ever bring your pet up to a mirror and ur like “that you”
If you have Crohns, Colitis, Ulcerative Colitis or any other autoimmune or chronic disease, you have probably been on a course of oral steroids (i.e - Prednisolone or Prednisone ect..)
When I was put on them the first time, I had no idea what was happening to my body, the doctor did warn me, but I hadn’t taken in the information.
So here are some good tips to know and some ways to handle being on medical oral steroids.
The usual starting dose is high then gradually lowers by weekly or by two weekly intervals. Some common side effects whilst being on the drug are as follows -
- Osteoporosis (thinning of the bones). However, there are some medicines that can help to protect against this if the risk is high. For example, you can take a medicine called a bisphosphonate to help prevent bone loss.
- Weight gain. You may also develop a puffiness around the face.
- Increased chance of infections, as steroids may suppress the immune system. In particular, you are at risk of having a severe form of chickenpox if you have not had chickenpox in the past (and so are not immune). Most people have had chickenpox as a child and are immune to it. If you are taking corticosteroids and have not had chickenpox in the past:Increase in blood pressure. So, have your blood pressure checked regularly. It can be treated if it becomes high.
- Keep away from people with chickenpox or shingles.
- Tell a doctor if you come into contact with people with these conditions.
- High blood sugar which may mean extra treatment if you have diabetes. Steroids may occasionally cause diabetes to develop. If you take long-term steroids, your doctor may arrange a yearly blood sugar test to check for diabetes - in particular, if you have a family history of diabetes.
- Skin problems such as poor healing after injuries, thinning skin, and easy bruising. Stretch marks sometimes develop.
- Muscle weakness.
- Mood and behavioural changes. Some people actually feel better in themselves when they take steroids. However, steroids may aggravate depression and other mental health problems, and may occasionally cause mental health problems. If this side-effect occurs it tends to happen within a few weeks of starting treatment and is more likely with higher doses. Some people even become confused, irritable and develop delusion and suicidal thoughts. These mental health effects can also occur when steroid treatment is being withdrawn. Seek medical advice if worrying mood or behavioural changes occur.
- An increased risk of developing cataracts.
- An increased risk of duodenal and stomach ulcers. Tell your doctor if you develop indigestion or abdominal (stomach) pains.
Know if you develop any of the above side effects don’t panic and DO NOT stop taking the drug. If you rapidly stop taking you steriod you body will go into serious withdrawal and your body will feel the effects of this within a few days. That is why is is vital to stop taking the drug in a slow and structured method.
Ways to fight back the side effects.
- NEW WARDROBE - Your body is going to temporarily change, its not nice and its not fair but its going to happen.If you wear clothing that doesn’t fit, your going to feel even more uncomfortable. I went up two dress sizes, I felt most comfortable when wearing loose clothing such are a blouse or a floppy shirt and leggings. (You can find charities and organisations such as http://www.crohnsandcolitis.org.uk/ who give out grants and benifits for those in need. When applying for the grant, you say what you need the money for. Some of the options are funding for a washing machine or new clothes ect..)
- CALCIUM AND VIT D - Don’t underestimate the powers of calcium. At nights I would be woken up by a painful throbbing in all my joints, from my fingers to my toes. I had been prescribed some calcium supplements called AdCal+ Vit D, but they tasted so bad, I didn’t take them. I found some kids, strawberry flavoured chewy supplements, I took two a day and in as little as a week i felt the benefits. So fight the throb and take your calcium !
- MOON FACE & BUFFALO HUMP - The only advice I can give you is that no one will notice the size of your face more than you. You may be scared to go out in public because of your extra water retention, and think people will stare or laugh but honestly, no one cares. I thought my face was as big as a XXL pizza, but everyone else called me crazy just for thinking that. (Psssst girls, you can contour your make-up hide the moonyness)
- TEA TIME- Stock up on your herbal teas, they are great at calming your out of whack nerves. Whenever you’re feeling odd, sad or angry for no reason stick the kettle on! Have a cup of green, camile or red berry tea and just sit and breathe for a while. We all run such busy lives, we never have the time to concentrate on our breathe or thoughts. This will help your emotionally challenged state relax.
There are many other things like, cutting out certain foods and don’t eat high amounts of sodium but when you’re on steroids, the less stress and worry you have to think about the better !
You’re not going to turn into this -
You might turn into this -
You WILL be back to normal soon, so don’t worry !!
Have a nice day,
Learning how to re-adjust your life to cater to an illness can be frustrating, upsetting and kinda scary.
Major life changes cause anxiety and stress, and with an unpredictable and potentially embarrassing illness like IBD, feelings of anxiety and depression are understandable. Quite apart from having to deal with the physical symptoms like pain, diarrhoea, and tiredness,you also have to deal with your emotional reactions.
So, if you do feel worried, anxious or depressed, don’t dismiss your feelings as irrational or signs of weakness. Try not to feel guilty or that you’re making a fuss about nothing if you need to have a rest or to take time off work. Remember that you suffer from an ongoing illness and
there will be times when you are going to feel stressed and tired. When this happens it really is important and sensible that you take care of yourself and take as much rest as you need.
Feeling weak, doesn’t mean you’re a weak person. Know your limits and rest when you need to. So when you are feeling well again, you will be confident that the rest you had taken has been valuable and necessary.
Personally,My life has changed a lot since I was diagnosed with Crohns Colitis. Friends have come and gone, I moved house, got a new job, I know myself more, i have to go up to the doctors/hospital a lot more then I have ever have to before and I have a repeat prescription list.
Most of the things on that list are exactly the same as every other 21 year old, give or take a pill or two.
To begin with it’s hard but once you get adjusted to your new life, it might surprise you. You might appreciate things more than you ever have and pay more attention to some things that once seemed meaningless.
Learn to love your self, pace yourself and know your body.
If you suffer from IBD or any kind of stomach problems, someone always has a new diet to put you on. Whether it’s doctors recommendations or highly recomended by a friend, these diets can be the miracle cure or not change a thing at all.
I have tried and tested most of these different eating styles. (I personally have my own diet that I’ve worked out over the years) and i thought i would share with you some things you can try below.
1) The B.R.A.T diet. Which means Bananas, Rice, Applesauce and Toast. This diet is aimed for those with diarrhea, nausea or vomiting and says to ease these symptoms by:
- ”Binding” foods and making your stool firmer
- Bananas are high in potassium and they help replace the natural nutrients your body has lost.
”) The Macrobiotic diet. This diet was developed in the 1920’s by a Japanese philosopher. The diet is not only about the food you eat, but they way you cook it. This diet is generally made up of.
- Organic whole grains, such as brown rice, barley, oats and buckwheat – half of your food intake
- Locally grown, organic fruits and vegetables – up to a quarter of your food
- Soups made with vegetables, seaweed, beans, chick peas, lentils and fermented soy (miso) – up to a quarter of your food
The Macrobiotic diet also suggests that you chew your food until it becomes a liquid in your mouth. Making it easier to digest.
3) The Low Residue diet. This is one a lot of people with IBD are advised to go on if they are flaring. The diet suggests that, although foods containing fibre are a natural aid to digestion, in certain conditions the foods can leave residue behind in the gut.
So being on a low residue diet may help avoid blockages in the bowl. Foods that are generally allowed are :
Boiled Pasta ,Jacket Potato (do not eat skin), Boiled white rice
White Bread,Tuna, Sliced Ham, Tinned Spaghetti, Plain poached white fish, Poached chicken, Omelette, Scrambled eggs, Custard
Ice Cream and Jelly
Foods that are high in fat are not recommended. You can find a full list of the do’s and dont’s of this diet here -http://www.gwh.nhs.uk/media/140811/low-residue_diet.pdf
4) The Specific Carbohydrate diet is a more popular one. It claims to have help thousands of people with various forms of bowl problems. The diet eliminates complex carbs and focuses on the chemical structure of foods. The diet consists of -
- Meat, Fish, Eggs, Vegetables, Nuts and low-sugar fruits
We’ve only consumed grains and cereals for the pat 10,000 years, the diet suggests that if we get rid of said grains then it may be possible to restart your digestive system to work how it should.
If you want to know more about this diet then i advise you to purchase the book Breaking The Vicious Cycle.
5) I personally suggest the Elimination diet. It takes time and effort but its worth it. Buy yourself a food diary, religiously write down everything you eat and how it makes your insides feel, if you find patterns in certain foods, where by these foods are causing you pain and discomfort, cut them out!
Through this process I have cut out -
- Brown bread, brown rice, whole grain foods, most seeds, some nuts, all meats,all fish, all dairy, refined sugars and beans.
Everyones list will vary, I have found I am much healthier and find it much easier to eat comfortably.
I encourage you to try these diets till you find the right fit!
I hope this has helped those confused about what to put on there belly :)
Whether you’ve been admitted before or even had an overnight stay, hospitals are a scary place.
You can do things that make your time in hospital a better place though. Here are my tips on making your stay in hospital better.
If you have a autoimmune or degenerative disease, it’s always handy to have a pre-packed overnight bag, just with the essentials like some underwear, pajamas, a soft blanket and a spare pillow. A good size for this bag is probably a medium backpack or something similar.
Once you have the basics in there, it’s quick and easy to throw in the other stuff you want to bring with you.
Lets say its time to go, you weren’t expecting it, but you need to go to A&E or straight to a ward. Here is a checklist you can refer to make sure you have everything you need to keep you safe and at ease.
1) All your different types of medicine in their individual boxes. Make sure you know the dosage that you take in grams (it usually says it on the front of the box) You don’t need to bring your stockpile of meds because the hospital will be able to provide them, but it makes things much quicker and easier for your care team when you have the boxes.
2) Your phone and phone charger! I always forget my phone charger, being out of contact with you nearest and dearest is scary for you and them. If your phone is low on battery and you have forgotten your charger, use the remaining charge to write down your top 3 necessary numbers. The hospital will let you use their phone.
3) Your laptop/Ipad/Mac, The smaller the better, you want it to be able to fit into your backpack. Carrying loads of bags around with you is annoying and can be really hard if you’re alone and feeling fragile.
4) A list of your dietary needs. For example, if your a celiac or you’re on a liquid diet or really allergic to something, they will write it down in your notes so you are definitely not fed it.
5) Some money. When i last stayed in, the wifi was on a pay as you go system, the signal in the building was poor so for me, wifi was essential, it’s also handy if you want to buy something from the little shop, like magazines, some extra food or bottled water.
Depending on your stay, you can bring as little or as much as you want. A good book is sometimes all you need.
You’re most probably going to be sleeping a lot, unless you’re put on steroids, then if you’re anything like me, you’ll be awake and agitated.
Whether you’re on the ward or in your own room, all these things can be taken in with you. The nurse will keep a record of your belongings and you will have a cupboard which is lockable.
Try and stay as calm as possible, remember you are in the best place, with 24 hour care. Don’t be afraid to use the button that calls the nurse over.
When you’re feeling down sometimes you just can’t get get out of bed. Whether its a bad headache or some serious IBD cramps its very boring being stuck in bed for days/weeks/maybe even months on end.
I’ve come up with some things to keep you from getting cabin fever.
1) T.V catch up - This is a great time to watch that show you’ve been missing or finally finish watching your favourite series. For me it was episode after episode of Grand Designs.
2) Be a book worm - I love books, but when I’m feeling rubbish, physically reading can hurt my eyes, and I just don’t want to do it. Then I found Audible. The website lets you digitally download books to your phone or PC so you can listen to them.
3) Catch up with family and friends - This is a great time to text that friend you haven’t spoken to in ages or skype with someone who lives far away, it might take your mind off feeling low by listening to the stories they have to tell.
4) Make a mood board - Write down a list of your goals and aims or what you want to do when your better. Have something to look forward to whether that’s to be better at school or learning an instrument. You can make this as simple or as extravagant as you like. It can be made online using Pinterest, keep it simple and use Paint on your PC or even make one by hand.
5) Be Comfortable - Make sure the space you’re in is clean, comfortable and full of things you like. For me it would be vanilla candles, my favourite photos, trashy magazines and my cat.
If you’re in hospital and you have your own room, you can bring personal belongings in and spread them out. Bring a blanket from home or a comfy cushion.
If you’re in hospital and you’re on a ward, you can still bring your cushion and blanket but you don’t have as much space. Try and make friends with the people on your ward, a friendly ward is better than a silent one. If you don’t want to make friends or are feeling really rubbish, as long as your nurse is okay with it, just shut your curtain.
(An ipad/ laptop/ headphones are a big plus to bring with to hospital if you’re in for the night or a while, i’ll do another post specific to hospital stays soon)
6) Get up - As soon as you’re feeling well enough, get up, move about and stretch your body. Have a nice big bubble bath and soothe yourself. Sit in the garden or open your windows, let the light in. Breathe fresh air, drink fresh water and juice.
Don’t lose hope, think to the future and talk about it. Let people know your symptoms good, bad or ugly.
Hello everyone !
I haven’t posted on her for months ! I’ve been a little worker bee keeping myself a bit too busy. I
Oh and I also got a little kitten :) Everybody meet baby Marvin -
More importantly though, recently i’ve been hearing about a lot of “tweens” and young teens in hospital with IBD or on modulen at home. I remember how confused and scared i was when i found out about my Crohns but I was 20.
I’m sure younger IBDers have a good support team from their family and friends, but it wasn’t till i found my online support, advice and inspirational friends, that i actually understood how important it is to understand your body.
You need to learn how to accept and appreciate you body. I know that its hard but you don’t have another choice, this is you. If you choose to ignore and abuse yourself, you will not succeed in happiness.
This is a message to the IBD community but especially the young IBDers.
If you need to talk to someone about your symptoms, if you need to moan to someone and feel like you’ve moan your family/friends ears off, If you have relationship problems or don’t know how to tell your work, your school or your friends about your IBD. I have valid experience with all of the above and will be happy to share my wisdom with you.
Please inbox me on here with any questions.
Be smart, Be happy, Stay Healthy
I’ve had a persistent headache for a week… Any tips ?