☀️STAMFORD SOCIAL MEET UP!☀️
Sunday 4th March 2018 from 11am - 1pm, everyone’s welcome to come along to see us at The London Inn. It’s a great chance to meet some of the Network Volunteers & other people connected to IBD. #stamford#ibd#crohnsandcolitisuk#social#lincolnshire
Can’t wait to sign up for #WalkIt at Leazes Park, Newcastle for @crohnsandcolitisuk 💜 I’ve suffered with colitis for 3 years now and its a constant struggle. More funding is needed & awareness needs to be raised about not just Colitis but IBD in general #crohnsandcolitisuk#ibdsucks#ibdwarrior
We’re not here to be perfect, we’re here to practice || I look at this and immediately think, terrible hip levelling, poor shoulder alignment, locked out supporting knee. And then I remember that this is the first time I’ve done dancers pose since my abdominal surgery in November and I was in an amazing place laughing having with friends and the fact I can do even a poorly aligned version is a bloody miracle! .
Yoga is not about create a perfect pose, it’s about being in your body, accepting where you are, knowing that wherever that may be is perfect and the fact you are moving is often enough of an achievement. On social media we often see the ‘perfect’ aesthetically pleasing pose and it can make us feel insufficient, but the reality for most of us is a) far from that, and b) there is no end point. It doesn’t really matter what anyone else can do. Accept where you are and enjoy the process 🧘🏻♀️ #youdontdoyogayoufeelyoga .
📸 @lifeisjustastorywritten with encouragement from the wonderful @angelpixielove
It's heartbreaking to hear people say "yeah he's beaten that disease" or "you're fine now though". Just because you turn up to work more days than not, or slap on your make up to try to at least feel a bit more 'normal', even when you feel like crap, (which let's face it is most days) doesn't mean you are "fine" or cured! They don't see the fight to get out of bed every day or the strength it takes to stay in work/pop to the shops. On the outside, we look strong and "fine" but on the inside is a constant battle to keep us looking strong and "fine". Only those who have Inflammatory Bowel Disease know the real strength it takes to keep getting up every day. 💜
Today I’m having a liquids-only type day in a bid to rest my gut. Herbal ☕️ is my lifeline for days like this, so I’ve created a new post (link in bio!) telling you about all my faves! 💕The @sainsburys caramel roobios Is INSANELY good (you need to try It) and I also love the concept of @tearexrocks! Which is completely cold-pressed tea! (Fresh turmeric and ginger 🙌) What’s your go to herbal tea?
Between May-July 2017 while I hospitalized, I really had horrible pain on my left leg. I wasn’t able to stand on it, or walk! I couldn’t move it properly! And the color of it changed to dark purple.My doctors couldn’t figure out at first but after my ultrasound they did for my left leg, we found out that I had DVT. DVT (deep vein thrombosis) is when a blood clot forms in one or more of the deep veins in your body. My doctors were shocked. They said these could have happened in my brain or in my lungs. Because of DVT, I had to use clexane(it’s an injection used to stop the blood clots forming within the blood vessels) and while using this, it increased my bleeding with UC! So I was stuck in between! If I didn’t use clexane I could have DVT again, If I use it my UC bleeding would go crazy! So after using it almost 4 months we had to cut it.And thanks to my DVT, I have to wear Surgical Stocking forever 😄😂 another thing is that thanks to my DVT - I can’t get into hot tub,sauna or turkish hammam. Taking a shower is Painful too! Because hot water gives pain where my DVT was! So before I get out of the shower I have to wash my left leg with FREEZING COLD WATER! Yeap! This is my life ❤️❤️ #dvt#deepveinthrombosis#deepveinthrombosissurvivor#ulseratifkolit#ülseratifkolitlemücadele#ulcerativecolitis#uc#ulcerativecolitislife#crohnsandcolitis#crohnsandcolitisuk#warrior#pain#survivor#fightlikeawarrior#crohnsandcolitisawareness
10 things to do after a Crohn’s Disease diagnosis:
After first receiving a Crohn’s Disease diagnosis it’s hard to know what to say, feel or do. It’s a shock and a lot to process all at once. You rush home and frantically search google for more information, raising your levels of stress and anxiety, with all the worst case scenarios rushing through your mind. This was me 3 years ago; lost, confused and scared with no clue about what to do next.
Whilst starting to come to terms with my diagnosis, the following 10 actions really helped me to understand and learn more about my condition and how I could move forward. I hope that they give you, or someone you know, somewhere to start in this time of uncertainty.
1. Take the time to sit down and process all the information (it’s a lot)
2. Have a cup of tea (or drink of choice!)
3. Cry – bottling up your emotions will only make things worse in the long run
4. Make a list of questions for your Gastroenterologist
5. Check out the Crohns’ and Colitis UK website – brilliant resource
6. Tell a friend/family member
7.Find out about an IBD Nurse (Rare and very special)
8. Follow your care plan even when you are feeling ok
9. Educate yourself about the disease and your care plan, to make sure you receive the best care for YOU
10. Try to manage your stress and anxiety to avoid triggering your symptoms
Crohn’s Disease does not define you….you are more than Crohn’s.
I wish I could have some how written myself a letter from this point in my life and sent it back 2 years ago when this all began. I thrive on staying positive and I've always been a great believer that staying strong through all of this will help me get through the other side but it's just not true. 9 months ago I was promised my life would change after having an ileostomy that my life would return, my pain would stop, I would heal and I would grow to become the person I once was. That was the truth they weren't lying but I was told 12 years. 9 months later and I'm back to where I started but for me I wish I'd never experienced that few months just to have it stolen again so soon. If I could have written a letter to myself I'd have told myself not to trust what they say, to not get my hopes up and not to rely on others.
The truth of the matter is I'm terrified, I'm absolutely terrified, I'd have told myself In that letter that what's the point in putting all that effort into strength when your going to end up scared to death, confused, back to pain, blood, morphine. But this time your own consultant admitting he doesn't have a clue and he's handing you over to the surgeons.
I want to be able to stop covering up and lying when family and friends say, 'how are you doing?' yes I'm fine. No I'm not fine my insides feel like a knife has been up there, is still up there and I'm pouring in blood and I don't have the energy to talk to you. But I'm scared if I admit that I will start to loose people but right now that is me, I'm not Beth covered in glitter, shouting from the roof I'm a girl who feels like she's dying.
At 23 why should I be in a position where I have to go through more invasive surgery that effects my fertility by 50%, recovery that I know is excruciating because I experienced a fraction of it 9 months ago, the energy, the healing the pain the scars, the wounds the learning how to walk again, being scared to eat.
And the truth is I don't even trust that after I go through all of that, that this will be over because the scariest part of living with Crohn's disease is that it's waiting for the next place it's going to attack.
💜1st n 2nd picture (today..10days after 'subtotal colectomy operation' removal of large intestines) 3.rd picture just before operation with my rock, my wall, my woman (mum)
40days in total in hospital today...
It has been painful, scary, confusing, ... Yes i knew one day i was going to have this operation but wasn't expecting it to be this soon nor urgent. As they couldnt keep my flare under control for a month they had to do an urgent operation which left me in shock. Still trying to come to terms with what i have experienced ( yes even tough I was determined and keen) 🙂
On the other hand I'm happy... happy that hopefully i will have my life back very soon.. not visit the toilet 10+ times a day, not worry about pain, not take coctail of medicine, not worry about what to eat what not to eat... ☺ yeeaasss bring on fish&chips&pizza&kebab(making some serious plans about what to eat after hospt)
Anyways, the reason for my post is that I want to Thanks to my family, friends, loved ones, EVERYONE for your support via messages, calls, good wishes, random posts u've posted on social media... you have all helped keep me sane in this hospital bed. Thank you all.
And ofcourde thank you for all those beautiful strangers with similar condition who has unconditionally replied to my anxious painful questions... Thank you
And I am okay 💜
“I’m Emily, I’m 23 and I was diagnosed with Colitis three years ago. I spent the summer of 2015 with a fever and bleeding into a basin because I was too weak to make it to the bathroom. It was only when I presented myself to A and E that a colonoscopy was performed and I was diagnosed with Colitis. I had a good two years of remission where I moved to Madrid to study and then finished my Law degree in London, top of my year.
But in 2017 I had my first flare, which I am still trying to beat 10 months later. I stopped responding to first line treatment, became dependent on steroids and developed an intolerance to immunosuppressant therapy. Now I’m trying 6MP, a form of chemotherapy, before Biologic at-home injections. All this has been in Paris where I am studying for a Masters in Human Rights Law - it hasn’t been easy!
IBD can be unpredictable. It has caused me pain, weight loss, excessive hair loss, arthritis and crippling fatigue. Though I’d give anything not to have Colitis, I’m grateful to it for teaching me the value of health, the beauty of hair regrowth, the importance of surrounding yourself with true friends and the bliss of stable mental health.
My message to the newly diagnosed would be not to let this stop you from pursuing the life you would want for yourself, if IBD didn’t exist. IBD can be a life- limiting disease but I hope my story helps other young people realise that the extent to which it limits your life is up to you. IBD can control a lot of things but don’t let it control your dreams!” Emily and Crohn’s and Colitis UK - Fighting Inflammatory Bowel Disease together 💜
🌟 My Little Insta Family 🌟
WTAF! So this is CRAZY 😱
I joined the blogging/insta world 7 months ago in the hope of helping anyone newly diagnosed with Crohn’s or Colitis, at the same stage as me & just fancied an IBD buddy, & raising awareness to the big wide world! 👩🏼💻 Awareness is where it starts! When I was first diagnosed I was so lonely. I didn’t deal with it very well in the beginning but it’s all the support on here that has helped me get where I am today 💖 Particularly throughout my surgery - that has been the toughest thing I’ve ever had to go through & I certainly wouldn’t have been able do it without all of you ✨ I’m so grateful to every single person who has seen, liked, commented, shared & messaged 💕 So much love from me and Rosie 🥀 I hope to continue to raise awareness for all things IBD & now Bag Life 🙌 ———————————————————————
I can’t thank you all enough for the support, love & help that everyone has given me! 🌟 I Love You All My Little Insta Family 💖
IM BACK BABIES❤❤❤❤
Cant apologise enough for not posting, but I've been doing a lot, and the week before last i was a poorly bee!!😭🐫🙈😣
What a better way of be coming back than posting one of my famous infliximab pictures?!💉🔪🔫💊
So when i was first put on infliximab, i would have azathioprine. God was that a bitch. But turns out that the azathioprine helps the infliximab keep working.. I HAD NO CLUE, and have not been taking the tablets for about a year....
Im on a new drug now, which i shall explain in a different post to give you an overview!!
This lil post is just to really say that im back and shall be posting a lot more! I have so much that i want to talk about that has happened with me recently, and really can't wait to share it all with you❤❤❤❤❤❤
It has been really nice reading everyones IBD stories on the @crohnsandcolitisuk insta page. Really hope that they keep doing this 💊😇😍💕
Well im of to watch survival of the fittest, and see how good it is. Feeding my inner love island 😂😂😂😂
💜So I decided to end this suffering once for all. I want surgery to remove my colon and get rid of this disease, to reclaim my life back! and yet I cant seem to convince my medics.. they think I'm acting emotional :)) Let me tell you.. Ulcerative Colitis puts me in hospital again for the 3rd time in 4 months. Been here for 12 days already and dont have a discharge date yet.
This post is by no means to get attention or get 'good wishes', it's just that I want to share my reality and of those thousands with similar condition.
Im in constant pain, cant sleep, cant eat, can't talk.. they are pumping my body with steroids and antivirals.. im swollen so much that i cant even recognise my own face.. I cant have any visitors just incase i catch another virus, I cant see my loved ones... Soo err yeah i think that makes me EMOTIONAL.. but i have never been this determined about the surgery! It makes me have butterflies in my stomach to think I am gonna get my life back... when how where TBC.
I Just want some feedback from those with the stoma bag about their experiences... #ibdawareness#chronsandcolitis#ulcerativecolitis#ulcerativecolitissupport#crohnsandcolitisawareness#crohnsandcolitisuk
💜So what is this Ulcerative Colitis (UC)?
simply put.. its where your immune system works so damn well that after fighting off every single bad viruses/ bacterias, it decides to further do by attacking the beneficial bacterias in the colon ( large intestines). its a civil war between the immune system and the digestive system (colon specific in UC)
Yep.. thats it..
andd ofcourse this war comes with its rewards in the form of 'inflammation'. Symptoms vary but simply: wound and ulcers in the colon causing bleeding, mucuousy diarrohea, intense intimacy with toilet 😋 ( can go up to 30 times a day .. ), abdominal or bodily pain, tiredness, loss of apetite ...all these crowned with pyschological ups n downs. 💜
So after the conventional education plava, I studied more and more annd moree ( they say once you start you cant stop 😉). But finally I got my courage together to stop and moved away to another town to work (those days you needed money to survive, life was hard back in my days ..lol.)
So one day I remember, October 2010, 5pm, off work, starving, no mummy to cook food, I am still a baby at the age of 25 and a serious junk eater at the time, I rightly decided to treat myself with a large pizza and a coke from some random kebab & pizza shop... I aet like there was no tomorrow and it felt good .....until i started running to toilet once, twice , 30 times in in 2 hrs... There I was thinking "shit.. food poisining" not knowing it was the beginning of a turmoil relationship with my Ulcerative Colitis Condition (UC) 💜
Ps: after 7years of experience I feel ready to embrace and raise awareness to my loved ones and everyone out there hoping I could help and contribute in some way.
So whats UC?