A month ago today I was on my way to theatre for an operation to remove part of my small intestine. I’ve been in a constant battle with my health over the past few years and unfortunately my poor intestines had scarred and narrowed to the point that I was struggling to digest food and not absorbing nutrients, something that every humans body should be capable of doing.
It’s incredibly hard having to fight your own body every day and having to deal with the pain and fatigue that Crohn’s disease causes.
Weighing a tiny 6 and a half stone, coming out of hospital and seeing the state of my poor body left me in tears; but a month later my scars are healing well and I’ve managed to just reach 7stone, which also made me cry again (happy tears 😭).
You never know how strong you are until your only choice is to be strong. I still have a long way to go but I’m still fighting 💜 I absolutely cannot wait to get back to ‘normal’ and feel good again, it’s been a long time coming 😌💪🏻 #crohnsdisease#crohns#crohnie#crohnssurgery#bowelsurgery#inflammatoryboweldisease#IBD#IBDwarrior#crohnswarrior#crohnsandcolitisuk#surgery#strength#positivity#bravery#imstillfighting#crohnsfighter#crohnsquotes
@southwestair got that mood lighting!! But in all seriousness, there are a lot of coughers and sneezers mulling about the airport, let alone getting on board. I really don’t know how well the mask will help, but I’m all for placebo effect. And sanitizing the hell out of my seat and all the things around me on the plane.
Side note: this is a 5-hour flight and I’ve been dealing with inflammation issues on my left leg that make it feel as though the circulation is being diminished. This is the first time I’ve opted to sit in the very front seat. All my supplies are above head. I had to pick a few things to keep on my person but there isn’t a cubby to be bad. First world problem? Probably. The benefit to this is I can stand and flex, and make sure that I help keep circulation flowing as it should. Blood clots have become a primary anxiety trigger over the past few years. So this is one additional step to help keep my mind at peace while traveling. I also chose not to medicate, for today’s flight. I’ve been able to forgo it the past few flights, but rescue meds are right above if needed. Fingers crossed, I can convince my spiteful subconscious that I am in control for at least the next five hours.
Traveling with #ChronicIllness is never simple, but it’s doable if you put your back in to it. 💃🏼 😂
P.S., heading to the #CCCongress . Janssen has sponsored my travel. All thoughts and opinions shared are mine, and my alone, because i am not a robot.
My body feels tight after this week, and my mind feels heavy, and somehow both feel a little foreign. Overall, I’m trying to be positive about my diagnosis, but the negative thoughts creep in every now and then. I’m taking tonight to reset, stretch out, and let my thoughts wander. I journaled them. And now I’ll release them here. It seems easy for everyone to ask how I’m feeling today, if it’s getting better, and the answer is, yes I’m slowly getting through this flare up, but due to the amount I’m restricting my diet. This disease is chronic, I can no longer stray from my healthy diet when I feel like it, I can no longer go out to eat without thinking twice about it. I have to worry that if I eat something as simple as popcorn, I’ll go from having a good day to being in the bathroom, bleeding and in pain. The unknown of where this disease is going to take me is terrifying. Yes I know I’m smart, yes I know I live healthy, but clearly, sometimes that isn’t enough. Chronic diseases are terrible, and it can sometimes feel very lonely, even though you have an amazing support system, no one actually knows how you feel.
It’s ok to go to a dark place every now and then, just don’t stay too long 🖤
CLC MEMBER FEATURE: Hi mighty warriors! My name is Nicole and I am 28 years old. My life changed in a way that I had never expected after turning 18 years old. I was a freshman in college, healthy, and determined to make my dreams of becoming a nurse come true. Little did I know, getting through the semester was going to be the most challenging.
Over the course of time, I began exhibiting sudden bouts of abdominal pain, diarrhea, night sweats, extreme fatigue, fevers and weight loss. Initially, I blamed the stress for all the symptoms, however, as the semester came to an end, my symptoms progressed and I knew something wasn’t right.
Multiple tests were performed by my primary doctor but no true answer was found. Shortly after, I was then referred to a gastroenterologist. Several tests and a colonoscopy later, I was diagnosed with Crohn’s Disease. Truthfully, I had no idea what Crohn’s Disease was or what to expect. I struggled with the acceptance of going from a healthy and athletic person to chronically sick. The fact of having no control over my life scared me. Meanwhile, depression slowly creeped its way into my life as I struggled with the debilitating symptoms. My confidence was lost and anxiety became part of my life.
Fast forward a couple years, a dozen medications, and 7 medical specialists later – nothing had helped to make me feel better. My life was a roller coaster, with short periods of good days and many bad days induced by multiple relapses. In 2016, I had a laparoscopic right hemicolectomy which helped to relieve certain symptoms, yet left me with erratic diarrhea and a severe stricture that is proving difficult to currently resolve.
Despite the challenges that Crohn’s Disease has presented to my life, I’ve learned to cherish life, appreciate the small victories, embrace who I am, love more openly and to smile as much as possible. Always remember that you are not weak because you have suffered. You are strong because you are a survivor. You are still you despite what your body chooses to be. You are not the disease! XoXo #chronicloveclub
Day 18 2018: it's 30 degrees here in Sydney today and I am SO ready for non hospital life!!! Just going with the flow and seeing where the day takes me today 😇 Always ends up being the best days anyway ☀️☀️☀️☀️
I'm Chris, I was diagnosed with Crohn’s Disease in 2009 after about 6 months ignoring symptoms I got so sick that I actually passed out and was rushed to the hospital.
After spending almost 4 weeks in the hospital and running all kinds of scopes and scans they came to the conclusion that I had Crohn’s.
My first form of treatment was HUMIRA, after being on it for a year I had a bad reaction to the medicine and my doctors decided to switch me to REMICADE.
It took me almost 3 years to get my self used to having Crohn’s. A lot of trial and error to be honest, it wasn’t until I took my fitness and nutrition seriously that I started to feel like myself again.
I wouldn’t be where I am today with out the support of my amazing wife and my two perfect little girls looking to me for guidance. They are the reason I fight so hard to be healthy. To show them no matter what cards you are dealt in life, you get to decide how happy you are!
Body image is probably one of the hardest things that i struggle with because of my crohns. When i had my flare which led to my diagnosis, i lost over 2 stone and actually felt happy, because i finally lost some weight.
Ive gained all of the weight back, which i really dont understand.
I told a friend of mine all of this, and she said, i cant afford to lose weight. If i do, the next time im ill, i will be a skeleton.
I wish to be healthier, inside and out.
I have happy days with my body, but then most days im not.
I looked back at the pictures from just after my flare, and realised i was so skinny, and really didnt look healthy. I dont think ill ever be happy with my body, but at least i look healthy..? -------------------
Random post with no prep, just all the words from my brain to this post 😂😂😂😂
1st image - a couple months after my flare.
2nd image - a week after getting out of hospital.
3rd image - one of the first night outs i went on, after my diagnosis.
4th image - october/november last year, going to the gym, and eating healthy
5th image - me now, bit of chub, however changing my lifestyle -------------------
I want to give words of motivation, and telling its okay to be like this, however its hard when youre still struggling 😔
Definitley going to be taking more images to show my journey with Crohns, such a lovely way of showing my progress on trying to make my life better with this illness 💪💪💪💪
Why do we, as a society, talk about our PROBLEMS more than we talk about our JOYS? 💭 We have so many conversations a day with others that contain pain, suffering, negativity and scarcity. What if we chose to speak of joy, happiness, positivity, possibility, health, abundance, energy and vitality instead? Today, I am actively and consciously choosing to speak of JOY and of all of the amazing things that are in my life as of this moment. Actively choosing to think of the GOOD will only bring more good into our lives. Which are you choosing today? 💜
Post Colonoscopy treat with my chauffeur aka @sascharoszakartist at @storefifteen ..I mean I really could have downed two gigantic pizzas with my hunger pains but I kept it clean seeing I had squeaky clean pipes 😂 So the good news is my ulcerative colitis has not spread into other parts of my bowel ...Yayyyy!!! Bloody awesome!!! (No pun intended 😜😋) Secondly, no polyps, no ileucal ulceration but the disease is in a relapse, which I already knew so my current diagnosis is active distal colitis aka active ulcerative proctitis with active inflammatory changes. So this is the dangerous part...the part that can turn into cancer if I'm not careful so now waiting on biopsy results to rule out any nasties like precancerous cells, the exclusion of dysplasia and histological assessment of activity in the ulcerated zone. 💩 I am just fixated on reading and analysing medical reports these days since I've become a health science student. It's been a 25 year roller coaster ride with this challenging disease but combining my daily intake of Western medication and Chinese Medicine, they both combat the ulcerative colitis in their own unique way and it certainly has made a significant difference to the severity of my relapses. In the past the disease has knocked me around where I was unable to work and/or leave the house. So that I am grateful for. On the other hand the stress of university as a mature age student and working can certainly be testing so I try to use relaxation techniques such a yoga, meditation, dietary therapy and gentle exercises to help me with this aspect of my challenge. I'm looking forward to implementing even more dietary aspects and ways to combat this disease in the not too distant future. #postcolonoscopymeal#postcolonoscopy#storefifteen#storefifteenmornington#gastromedicine#ulcerativecolitis#ulcerativeproctitis#ibd#inflammatoryboweldisease#ulcerativecolitisawareness#amankoraucsupport#tcm#chinesemedicine#traditionalchinesemedicine#girlwithguts#chinesemedicinestudent
Day 17 2018: IM OUT IM OUT!!!! WOOOO! Let's hope I can stay away from hospital for more than a month this time! Definitely not better but I'm on a range of new medications and will be starting low FODMAP! I will return to clinic for a review in two weeks to see if we need to introduce new meds etc. It's bittersweet as I'm still sick and feel awful but at least we have a plan and I can be at home in the meantime 💛✨⭐️😇
I spent the night vomiting and woke up with a fever of 104.3 this morning. Primary told us to go to urgent care, urgent care sent us to the ER, and the ER admitted me immediately. Waiting on blood cultures and CT results, but treating this as another serious adrenal crisis. Blood pressure is currently sitting at 84/49 and being stubborn as hell. This guy just had to leave me and we both started crying. He said “I always hate to leave you; but I especially hate to leave you right now.” 😭 I’m still crying. Mostly because I’m in pain...but also because he’s my world and we have to be apart right now. He was supposed to start his new job today—and goes to New York this weekend...and now this. 😞 #Addisons is as serious as it is rare. We are still wrapping our minds around how complex this disease is... #raredisease
Letting my hair go au naturale!
I get a lot of questions about what I have been using to grow my hair and all I use is the @renpure Biotin and Collagen Shampoo and Conditioner. They make my hair feel thicker, softer, and look so much healthier! My hair has taken almost a year to grow this long after losing 90-95% of it and I still have many different lengths while it grows back, but I am thankful every day for the progress it has made. Seeing your body grow stronger and healthier is such an incredible thing to experience.
It’s been quite a sucky time lately.. After surgery, I woke up in SO much pain. I woke up in excruciating pain that I pretty much ended up screaming at the recovery unit doctors/nurses to get me a PCA and some Morphine... Because I could NOT cope! It was terrifying. They injected my stomach with some painkiller with a fancy name (that I can’t remember about). I felt a bit better then ☺️ I have a drain above my Ostomy bag in my abscess area... That hasn’t really drained anything. I have 2 plasters over my laparoscopic incisions (keyhole) & a terrible terrible bruise from an injection.
My surgeon removed around 6inch of my small intestine... So I yet again, I have a new Ed! (Still in the same place as the last one though). Did anyone watch the kids show on Cartoon Network called Ed, Edd n Eddy!? I’ve had 2 Ed’s... I think it may now be time for an Eddy 😂😂! But the Stoma itself is HUGE.. it’s the biggest one I’ve had yet!! I hope the swelling calms it all down because it is SO SO big 😱
I came off the Morphine PCA today (because I wasn’t supposed to have it in the first place and it was making me super drowsy, emotional & anxious). So I’m now on Oxycodone and Paracetamol. Tonight, it hasn’t touched the pain.. The pain has been surreal.
I think that’s all I have to ‘update’ everyone on... if there’s something I missed or any questions, please ask and I’ll try my best to answer them 🙈 As always, thank you for the support!! Lots of love 😘💜💜 (this post has taken me over half an hour to write due to drugged up beth being so slow and falling asleep half way through each word 😂)
She’s a perfect 10, but she wears a 12 🎵🎶 Im absolutely ****ing starving!
Now there is a January diet and then there is MY January diet, not by choice but thanks to prep I’m having to starve and shit myself while also having to drink laxatives.
So this is my first time drinking this stuff in prep for tomorrow and my god surely having crohns colitis is enough of a sacrifice I have to make in life, not even when mixed with orange juice does it mask the taste of this stuff.
Please dear Jesus surely they can make a better tasting drink especially when your having to have two litres of the stuff. And if that’s not painful enough all I want is a piece of bread just to mask the hunger, honestly i could eat a scabby horse. I have to keep reminding myself that tomorrow is D-day, the day I finally (hopefully) can have my full scoop as my first one had to stop within two inches because my bowel was that inflamed and ulcerated they risked perforation, hopefully this time even though I’m still in a flare up they can go further and dig out more answers and hopefully the answer I’m looking for! I’m hoping the surgeon will agree to the surgery that I want, I want my bag! I’m ready now. Although I know and he knows we don’t have much option and I will be facing surgery at some point my surgeon only wants me to have a section removed where as I want the colon gone now. I can’t cope with this pain no longer, I want to wake up and not have to worry about have I brought my spare pants and knickers for well you know just incase. I want to be normal even if it’s just for a year I’ll take it
And if I get my answer I promise next time I’ll drink my moviprep like a good little girl
Are you getting enough sleep? Sleep is crucial because it plays a major role in the maintenance of your regular bodily functions. Unfortunately, for many, sleep it is either hard to fall asleep or stay asleep. Many people get a full eight hours but don’t get restful sleep, leaving them with a tired feeling throughout the day. As with most problems, there is a pill for that. But if you would like to look into a more natural approach consider changing what you eat. Peter Alongi, D.C, explains the benefits he received from food sensitivity testing:⠀
"I am approximately 70 days into my four-day rotation food plan. I have eliminated all foods that I tested positive to and would like to share my results with you.⠀
As well as a 10-pound weight loss, I have had a marked decrease in gastrointestinal distress. This had also been accompanied by increased energy levels, particularly upon waking. I would usually feel tired even though I had slept 7-8 hours."⠀
Food sensitivity testing might help you achieve a better quality of sleep and so much more. If you would like more information on how food sensitivity testing can help you please feel free to message us. ⠀
Here is the complete 5-star review from Lisa!⠀
We are grateful to be able to serve and help people with their health challenges. One of the most fascinating things about Lisa's review and experience is that we helped her with her environmental allergies by changing her food sensitivities. Your body's immune system is interconnected to a certain extent so reducing the immune response in one area helps the body better handle and fight off other allergens. We do recommend adding at least our Total IgE test to you Bloodprint Food Sensitivity test to find out if you have elevated IgE in your blood (serum) which can indicate whether or not additional specific IgE allergen testing is needed. Though it is winter, now is the best time to determine the right foods for your body and gain insight into how to best prepare for spring and the increase in environmental pollens.⠀
Did you know you can get your daily protein intake from vegetarian sources?
Not only are beans a great way to get your protein from (same as lentils, chickpeas etc) but you are also getting 15 grams of fiber per 100 grams serving. Whereas meat gives you 0! In today’s diet most people aren’t getting enough fiber. The doctor recommendation is 25-30 grams of fiber minimum a day.
Fiber is necessary for our bodies to function properly.
1)Fiber aids in digestion & elimination; therefore fighting constipation
2) Fiber helps prevent heart disease which is a very prevalent disease affecting the world today.
3) Fiber helps control blood sugar levels & helps to prevent diabetes
4) Fiber prevents diseases of the digestive tract like colon cancer, inflammatory bowel disease & diverticulitis.
5) Fiber makes you feel full therefore helping with weightloss
Other sources of vegetarian protein are lentils, chickpeas, quinoa, chia seeds etc.
HEALTH UPDATE: I visited my second home today and saw my consultant for the first time since I started Ustekinumab. It was my quickest visit ever and for the first time in ages it was smiles all round instead of concerned/pity expressions!
I've been on my new medication for about 3 months and I would probably say that my crohns symptoms are about 85% gone! We are very happy and we think that after 3 long years we may have FINALLY found something that works!
We decided that I should have another pill camera test at some point over the next few months to see if my intestines have actually healed but we are bit apprehensive to do it right now.
You see typically if you are 'healed' then the funding board see's no reason to keep you on such a strong and expensive medication and can stop me receiving the drug.This was a big concern of mine. However my consultant reassured me that we have grounds to appeal should that happen since I have a strong history of relapsing and there is a good argument that no other medication has worked for me. So it should be absolutely fine to continue on stelara until it stops working.
Overall though, apart from my current tickly throat and sniffly nose I'm feeling pretty damn good! About bloody time!!
Ed gifted me the watch of my dreams for my birthday, isn't it just so beautiful?! 😍my mammy got me the gold bangle too, she got me a silver one for my 20th but we could never find a nice affordable gold one until this year and I think gold suits me more 😊
We explored a cemetery this morning and it was so peaceful, especially with the tiny wee sprinkling of snow. Prague has so much history and I think sometimes it might get forgotten in the rush to see other more popular touristy things but we enjoyed taking some time this morning to think about the past.
Tbh though I have struggled to keep up today, the exhaustion has really kicked in and I couldn't really manage much else so we've taken it fairly easy and rested a lot. Tonight we are going to a restaurant with live jazz for an hour or so and then headed back home to bed! 😴
Is anyone else the only one in your family with IBD? I’m curious how often it runs in families since I’m riding solo in mine. I’ve also wondered how much my family history and biological makeup affects my gut. My mother is Asian and my father was Scandinavian. I’ve wondered how much this affects my condition and how different foods agree or don’t agree with my gut. I know it’s been said that people of Asian descent are more prone to lactose intolerance. And I know that dairy is a major trigger for me..I’m curious to hear what you think?? Have you looked into this and if so, please share!!
✨3 weeks post-op today✨
I thought I’d share some (maybe TMI, this is your warning!) thoughts on surgery two now that the worst part is behind me!
Things I didn’t expect #1 : a leaky bottom! My surgeon said this is completely normal, but it’s still SO weird to me. I am mainly passing mucus and a water type substance. No blood except right after surgery, so that’s reassuring! I’ve had to wear a pad/pantyliner since surgery. My surgeon said with time that will decrease and eventually stop. In the three weeks since surgery I have seen a decrease in the amount I’m passing, but it’s still not minimal enough to go without some protection. Totally manageable, even though it’s slightly inconvenient. 🤷🏻♀️
Things I didn’t expect #2 : a sore butt! It totally makes sense, seeing that my surgeon removed my rectum, created my J Pouch, and attached it to my anus. This was something I honestly didn’t even think of, but looking back, is such a “duh” type of thing. It’s definitely gotten better, but sitting on hard chairs makes for a very uncomfortable situation, as does lots of walking. I know this will get better with time, so I’m not too worried!
Things I didn’t expect #3 : trouble with my stoma! I’m my previous post I talked about how many problems I was having with my new loop ileostomy. I took my end ileostomy for granted. It was so easy! The good news is my new convex wafers are really helping and my skin is healing! It doesn’t feel like a constant ring of fire anymore. So thankful for that. 🙌🏻
I see my surgeon soon for my post-op appointment and I’m hoping to get my takedown surgery scheduled! 💩
So I am a couple weeks into a total revamp of what I consume. I have eliminated gluten, grains, dairy and only eat organic grass fed meat and organic fruits and vegetables. I have been following the #myersway and let me tell you I see so many changes. It is the first time since being diagnosed 15 years ago that I have hope. I had a bad flare with #crohns over Christmas and so thankful I feel better than I have ever felt now. I will keep you updated on my progress.