Bonjour you lovely bunch.
Just a little update for you but everything is going really well. ☆
My memories from hospital are really fuzzy, I think because so much happened in such a short space of time. I've literally slept since I've been home and I feel great. It's probably safe to say at this point, that the insomnia was a direct, psychological link to Stanley.
I've very little appetite at this point and I've lost a dress size in a week, don't know actual figures but I'm really trying to eat little and often, as I'm desperate to heel properly and as quickly as possible.
Having done a little research yesterday, I'm very aware that my operation site is very atypical. My scar is 10 inches long, horizontal from my naval. They've glued most of me together, bar the site Stanley was situated. I had absolutely no idea this would remain an open wound but I like a surprise 😕. I won't lie, the daily repacking is not good but it's over in a few minutes.
Manoeuvrability is limited, every slight bend or stretch feels like it's ripping my stomach open but it is only day ten!
The only real niggle is the epidural site. For some reason it's really giving me some grief this time but that too, will pass. All in all I'm doing really well and yet again, have surpassed my expectations of myself. With each surgery that passes (this was number 25) I don't see how it's possible to keep bouncing back from the point of no return but every time, I do. 💪💪
“I was diagnosed with Crohn's Disease in 2007 at the age of 17 after having 4 major surgeries. I then embarked on the drug and steroid journey with varied success, one anaphylactic shock and admissions to many hospitals including one in Beijing, China.
Finally, at the beginning of 2015, I had a sub-total colectomy with end ileostomy, with future plans post family for a panproctocolectomy. I live with my "Pucci" bag and our relationship can be shitty...but I am so grateful for a life without agonising pain. A life that can be lived and enjoyed for all its experiences.
I am now 28 years old and have achieved a lot in spite of Crohn's. Since my diagnosis, I went to university both here and in Beijing, graduating with a BA in Chinese and Spanish. I was then awarded a scholarship to study for a Masters in Latin American Interdisciplinary Studies.
What next for me? I embarked on an exciting career in Parliament, and have recently been promoted to Chief of Staff!
Crohn’s isn’t a great diagnosis and the treatments can be dreadful, but I am sure that in many ways, it has made me the person I am - strong, determined and very aware of getting the best out of life.
Now that my health is up to it, my Mum and I are taking on a new challenge and walking the Camino de Santiago in Spain. It will be approximately 75 miles and take over 9 days. It won’t be easy and we realise that we’ll have to push ourselves BUT it will be a tremendous achievement for us both.” Laura and Crohn’s and Colitis UK – fighting Inflammatory Bowel Disease together 💜🌍🚶🏼♀️💪
**At parents house, in bed, it's late, but I know both of them are still up in living room.* Me: *texts dad* "Want to go riding tomorrow or do something if the weather is good?" Mom: *in other room*
"Who texted you?!?!(This late at night?)" Me: *decides to text mom to screw with them.lol*
Me: *texts mom* "I love you, thanks for everything you do for me." Dad: *in other room, to mom*
"Who texted you!?" Me: *busts up laughing*
I can't decide which one I like, so I posted them all.
Ugh true 😤😂
When you start feeling sleepy all night, don’t try to fight it, just lay down maybe read a book, listen to music, or even watch one of your favorite shows! That’s what I do to help me fall asleep, listening to music at night works for me every time, it’s so relaxing. Always remember this, it’s ok to take a lazy day just to relax and to have some alone time, it really helps a lot when you have a chronic illness. 💜💜💜 #ulcerativecolitis#crohnsdisease#ibd#ibdwarrior#ibdfighter#tired#mytiredistired#purpleribbon
This isn’t a pretty post but it is my truth. Part of being honest with yourself is owning it & honoring your voice. The truth of having an invisible disease can force you into feeling shame for not looking sick & people not understanding you because you look just fine, extreme exhaustion for the constant flight or fight in your body, feeling embarrassed to share your illness & lastly the hopeless feeling of... will I feel like me again? I just want to be -“normal” again. I don’t share this for pity or sympathy because I’m blessed beyond words for countless things. I share because I pray that my journey through all of its struggles to wellness can perhaps inspire someone who needs courage to take a step. Take that first step whatever that means to you to your health. I have an auto immune disease, ulcerative colitis and am on my 5th remicade infusion and can’t believe how hard it was for me to share this until now. Thank you to all who love, support and believe in me so that I can smile today and not look back. I can look forward and know that everything is going to be alright. Today I thrive ...I no longer just survive. #wellnessjourney#ulcerativecolitissurvivor#takealeapoffaith#remicadeinfusion#beliveinyourself#courage#invisibleillness#mindfulness#ibdwarrior
Most people would say the person on the left is obviously healthier. But in that picture I was severely malnourished, underweight, and I only had half the amount of blood in my body that a normal person should have. On the right I’m missing my entire large intestine, half my pancreas, parts of my small intestine and stomach but im finally considered a “normal healthy adult”. Not only that but I FEEL 100 times healthier. Just something to keep in mind. You don’t know what people are going through. #invisibleillness#ibdawareness#ostomy#ostomate#ibdwarrior#smilethroughthepain#battlewounds
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
Got in an early morning elliptical session in before hitting the road for New Hampshire to see some friends. Seems like the body is working again after a week if stomach and back pain. Not jumping in head first again yet but at least getting in some form of working out with my chronic disease. 🏊🚴🏃🏅👊
Gooooood morning. 😁👋🏻 Sour dough bread with mashed avo, mackerel and spinach for brekky this morning. Fishy oils are great anti inflammatorys so I try and eat a lot of fish, I warm them up and they go great with avocado. Sadly no tasty granola bowls as they’re not great for people with UC.
I’m off into London today, which is tricky as I’ve found eating out really hard but it’s all about finding cafes and restaurants that can cater to your needs. I’ll post any good ones I find on the way!! #antiinflammatorydiet#ibddiet#ulcerativecolitis#ibdwarrior#healthandnutrition#mygoodgut
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
I’ve been super swamped with life lately so here’s a picture of a much less stressed, happier me doing what I love to do! I’m currently preparing for a really big work tradeshow event in Las Vegas and the stress of that along with normal life, yoga teacher training, and overall disease management is starting to wear on me. I’m trying SUPER hard to find balance and really hope my healing isn’t reversed after all of this! I know I can do it I just need to remind myself to slow down. And daydream of catching big fish on warm sunny days....*sigh* 🎣☀️
There’s always a down to an up. But then there’ll be another up after that down. .▪️.
I had a bad breakout of mouth/throat ulcers and had 3 lots of antibiotics to help them heal. Today I finally feel like they are starting to get better. But I had to delay my Humira injection, which is already showing on my creaky bones and joints - it clearly helps my AS more than I realise! But on the plus side not being able to eat much has resulted in a little weight loss and I think that is good for the AS. .▪️.
Life seems to be throwing a lot of shit at my family this past year. To list a few of our crappy problems: my mother-in-law passed away suddenly at age 53; our toddler nephew who is autistic had a nightmare at the hospital and is currently unable to see; my granny has dementia and has been hospitalised; my granda who is 94 is failing; our dog needed 3 operations on her leg; two family dogs died; my sister’s marriage broke up; my other sister basically disowned our family; I got diagnosed with AS and Crohn’s. Believe it or not there are even a couple more dramas I wouldn’t even post about. .▪️.
So tonight I am grateful and proud. I’m grateful for the support we have, and I’m proud that we are getting through it. I think that anyone who didn’t know us, who saw us as a family, would just see a normal couple having fun with their kids. Strangers wouldn’t have a clue what we have been through or what we are going through, we’re holding it together pretty good, and holding each other up very well. That’s our skill for now 💜
I’ve been feeling a bit run down, super fatigued, aching muscles & joints over the last couple of days 😴 ⠀
My dinner tonight which is becoming a bit of a fave of mine was a couple of chicken breast, served with 2 portions of root vegetable mash (coming in at only 200 calories! #VolumeFood ) and then a bunch of micros on the side (with lashings of gravy which hasn’t been pictured)🍴⠀
All cooked in the oven or microwave. An easy dinner on a Friday night at its finest 😂⠀