Another pre opperation assessment.
Yesterday I stressed, and I questioned if I could afford the recovery, to have my opperation. The benefits system makes it difficult for single people like me to move forward in life.
But after 10 years of pain and discomfort I will no way be turning this chance to live a better quality of life.
Thank you #nhs 😍
After going to see the Made For More movie event last night with Rachel Hollis I was all fired up to get busy making all my dreams come true. What a bummer that a prolapsed stoma has stopped me dead in my tracks today. In case you haven’t seen my post in my stories and don’t know what that is, I’ll tell you. When you have a stoma it’s supposed to stick out about an inch from your belly. When it prolapses it comes out further. Having your intestine poke out out of your belly at all is weird enough but seeing it protrude several inches or more has my stomach queasy. Not only is it so bazaar and uncomfortable but it hurts! I’ve been online researching what I can do to fix it in my own. Laying down, pouring sugar on it, or applying an ice pack are all temporary fixes. I really don’t want to have to go see my surgeon about it and I really don’t want surgery to have to fix it. Above all I really don’t want a prolapsed stoma. It’s prolapsed on occasion in the past but has always gone back in and stayed. I keep wondering if I did something during our hike at Kanarra Falls that had caused it. I noticed it was prolapsed then and have had a hard time getting it to stay since. If it’s not better tomorrow I think I need to make an appointment to find out my options. 08/14/18 #stoma#stomas#prolapse#ostomy#ileostomy#ostomyproblems#ostomylife#crohnscolitis#colorectalcancer
A fine work of art submitted by @leonnaise Have you read the latest blog post? It’s all fun and games until you shit yourself. Read it at www.crohnsiscray.com or visit the direct link in our bio! #crohnsiscray#crohns#colitis
I’m home!! Third admission since March 😴 After spending 6 days at the hospital again I’m now home with my furbaby and can relax! 😍😴 Crohn’s flares are no fun at all but back on steroids and on a liquid diet and starting infliximab soon 🤞🏻
Thanks to all you savages out there who follow along with the ‘Cray’. As a way to say thank you, we will be giving away a free Crohn’s is Cray mug!
To enter: 1. Comment below about what you like most about Crohn’s is Cray and 2. Like Crohn’s is Cray on Facebook. Winner who meets this criteria will be picked at random on August 31!
mri clear which is unusual as it’s not even showing inflammation which is good but my blood markers are up for inflammation 🙂
dr wants to start me on infliximab but she can’t do that until she’s spoken to my TB specialist as they may want to wait until I’ve finished the 3 month treatment for TB but my dr wants to push for it now!
My bloods for my liver aren’t good so my TB meds have been withheld until my dr has spoken to the respiratory team! My dr is also gonna ask the radiographer about my scan to definitely check it’s normal because my bloods are still showing high inflammation.
I’m better on my steroids so getting switched to oral steroids and keeping with the liquid diet! She said once I’ve been switched to oral steroids and my bloods come back fine I can go home and then get treated as an outpatient with infliximab whenever that may be! 🤞🏻hopefully tomorrow!! basically what’s happened is that I’m having a bad flare seeing as I’m not on long term meds so her plan is to get me on that ASAP!! It’s all just a waiting game now to see when I can get home!
Wearing my amethyst bracelet for those positive healing vibes and stress reliever (also my favourite crystal) 💜💜
IBD: It’s all fun and games until you shit yourself. You’ll laugh and cry through the latest post on crohnsiscray.com highlighting the “shitty” parts of this disease 😂💩 link to post in profile! #crohnsiscray
So here’s a little update! If you watch my insta stories you will already know what’s been going on and that I’ve been admitted back into hospital.
So on Thursday I went to A&E at the royal with very bad chest pains, it was sore to breath in and when I ate food. I got admitted into the royal infirmary 5 hours later after getting anti sickness meds and morphine. The next day I got an endoscopy (camera down my throat) to check my Crohn’s hadn’t spread to my stomach. Luckily that was all clear and it hadn’t spread any further. The next day I got transferred over to the western general so I could be with my GI team and discuss next steps. My drs from the GI team spoke to me and told me that because my Crohn’s is mainly in my small bowel what is happening because it is so inflamed and narrow every time I eat food it’s causing me a lot of pain. They are also thinking that I could have a blockage. I’ve been put on a polymeric diet which consists of clear soups only and ensure drinks. I’m also back on a list of meds steroids, lansoprazole, calcichew, rifinah, pyridoxine. Next step I’m waiting to go for an mri to check scar tissue has not developed or I’ve not developed any strictures. If this has happened my drs suggested that surgery would be the best option. Previously I was too wait to be put on biologics as I’m on a 3 month course of treatment for TB but now I’m getting to start my biologics tomorrow so I’ll be starting infliximab.
I got diagnosed March this year. It’s been a tough few months three hospital admissions, three colonoscopy’s, one endoscopy, ultrasound, various X-rays, one mri and awaiting another one and lots of various other tests but I’ve managed to overcome some of my worst days in the past and I can do it again!!
How in the world was I misdiagnosed with stage 4 cancer? It’s a question I’ve wondered about and have been asked several times in the past month. The answer is, I’m not really sure. I’ll meet with my doctor next month but will share what I understand so far. The areas that light up on a PET scan indicate hypermetabolic activity. Often cancer cells fall into this category of being hyper metabolic but not always. In addition everything that is hyper metabolic is cancer. For most people a stage four cancer diagnosis would have been correct. But I am not most people. When it comes to health I am never normal. In this instance it worked to my benefit. As I met with Dr L after he got back into town our plans shifted from scheduling surgery for me to get my port implanted and finding out what kind of chemo I would be starting to getting some answers first. He knows my history and recognized it was complicated. He knew we couldn’t rely solely on the PET scan. It took some time and we had to be patient when we didn’t know if we had that luxury. He met with several of my doctors and surgeons to discuss my case. He met with the radiologist who wrote the report and my radiation oncologist who used to be a radiologist. He began to compare my CT scan scans from the previous year to the CT portion of the pet scan and felt the previous scans didn’t support the new findings. With each appointment I had with him, Dr L went from thinking it was cancer, to not convinced, to NOT thinking it was cancer. It’s been over a month now since the biopsy results came back showing NO CANCER! Hallelujah! What a miracle! So if it’s not cancer, what is it?? It’s inflammation. Most likely caused by Crohn’s or surgeries, or both. My next scan will be at the beginning of September. I will continue to have CT scans from here unless something shows up on one of them. I’ll meet with my doctor after the scan and hope the only thing we have to talk about is my new standing since the local recurrence from this past January. The war continues but for now we are enjoying right now. 08/10/18 #colorectalcancer#cancerfree#goodnews#crohnscolitis#ileostomy#cancerfight#cancersurvivor
IBD babes, it’s my first day of #stelara getting my hour loading dose and then I’ll be switching to self shots every 8 weeks. Any of my babes here have experience with stelara? So far so good for me. I just really dislike sitting in infusion centers. Gives you a different perspective. #crohns#crohnsdisease#crohnscolitis#biologic
I am SO happy to find that @seedzprovisions here in STL has started carrying @thecoconutcult probiotic yogurt. I learned about this yogurt quite a while ago when @aiplifestyle mentioned what an amazing product it is. We relocated from Cali to MO, and lately I’ve really been missing some of my favorite gut supportive foods that were so easy to locate out there. I look at this product as if it were medicine, and not just yogurt (high price tag, but I use it just like medicine with a very small dose- a tablespoon daily). It contains multiple strains of bacteria (way more than regular off the shelf yogurt) and is dairy free and gut-busting thickener and emulsifier free (no starches or gums). Totally #AIP if that’s your thing and #IBDAID compliant. You can order it, but I’m extremely hesitant right now with the delays in shipping with the fires and I always get anxious about shipping foods that need to stay cold in the hottest days of summer. I’ll post the label in my stories. #dairyfree#paleo#autoimmuneprotocol#guthealing#foodasmedicine#ulcerativecolitis#crohns#crohnscolitis#cdiff#mycobacteriumaviumsubspeciesparatuberculosis#antimycobacterialantibiotictherapy#probiotics
This is my #wish @poshmark has helped me raise thousands of dollars for #charities through the #poshmarkcommunity and years of #poshnsip#poshnsips MY wish is that success comes for everyone. #theposhlife day 3
Live life to its fullest you never know when it will be taken away. #inspire#support one another. Be yourself. SOME Charities I support @steppingstonesupport is an amazing foundation based out of #LongIsland Help stomp out cancer! Along with #camillescrusaders who run in the #nationalracetoendwomenscancer This November 4. @crohnscolitisfoundation helps families and find a cure for #crohnscolitis - almost lost my cousin who is like my sister to this terrible disease. #huntingtingtonsdiseaseofamerica#Hdsa Helps families and looking for cures for Huntington’s Disease. Horrible illness I lost my dear sister to at such a young age. Last but certainly not least in this grouping is trying to help find a cure for AIDS. I lost my father to this. Miss him everyday. So THANK YOU Poshmark.
I started treatment for Crohn's two years ago today, and the felt differences have been incredible! I went from less than 90 pounds to more than 100; to feeling my body getting better; to studying abroad in seven countries; to running my first mile since the day that I was diagnosed. 10,220+ pills later, and I am grateful! #standupkeepfighting#dearcrohns
Since I came of Prednisolone two weeks ago, I've been in constant pain. Mainly upper abdomen on the right that spreads to lower abdomen and back. Have had a scan of pancreas and gallbladder requested but Dr thinks it's likely to be side effects from the Prednisolone so have been prescribed Omeprazole to try and help.
Definitely at the stage where I'm feeling like this is never going to end. Took two years to get my diagnosis and nothing seems to have improved since.
Could really do with a win right now. 🤒😷💊 #crohns#crohnsdisease#colitis#crohnsandcolitisuk#crohnsandcolitis#crohnscolitis#IBD#omeprazole#omeprazol#iheartguts#intestines
A year ago today, I had made this post not realizing what was going to be in store for me all throughout this past year. Prior to this post, I had never given much thought about raising awareness of IBD or breaking the stigma of life with an ileostomy. My IG profile had no direction and the posts I made were humorous posts or selfies of what I’m up to for my friends and family that were following me. Throughout the years, I was always shy of showing off my ileostomy and I had only shown it to my closest friends and ladies I was involved with. My therapist had made a suggestion back in 2016 for me to break my shyness of my ileostomy by posting a pic of myself with it. At the encouragement of him and a few of my other close female friends I went ahead and did so with very little fanfare. Then starting in 2017, I started working on documenting my weightloss journey on here and dropped 35lbs in the process. When I made this post above last year after a trip to the beach which I hadn’t done in ages at the time, I was coming to terms with my own acceptance of my body image and working hard on losing weight. I was extremely amazed at the likes I was getting despite it being an art piece by @jude_devir and using proper hashtags for IBD and ostomies and I usually average about 5-15 likes per post during that time. What caught my eye the most was a like by a user which contained ileostomy and Crohn in the same handle. Curious, I looked up the person who we all know as @ileostomy_crohn_princess and I was awestruck by not only her beauty but her positivity and the shine that she radiates to many of us! I was a little hesitant to interact with her but when I did, she encouraged me to show off my ostomy and told me that there’s nothing to be ashamed of. With her words echoing in my mind, I went ahead and went for it. She had also asked me to help her and others raise awareness and give support and encouragement to those in need. As I mentioned, I never gave a thought about it and at the time, I didn’t know how to go about it. [Continued in the comments below👇🏼]
Ah ha, they do exist!! I’m finally in remission although it’s not exactly the total vacation from Crohn’s I thought it would be. Read about this and nine other things they never tell you about having Crohn’s at www.crohnsiscray.com or use the link to the post in bio. .
✨ F U E L ✨
• Is anyone else guilty of going to @barryscanada just for a smoothie? 🙊😂 (to be fair, I live around the corner 🏃🏻♀️)
• Giving my body a bit of a rest this week 💪🏻, but making sure to still give it the fuel it needs ⚡️💚
• This one has spinach, mango, #veganprotein , and almond butter 😋
• What do you guys like in your smoothies? 👇🏻
Just because I eat real food to support my healing doesn’t mean it’s tasteless or gross or that I can’t enjoy myself when we’re out. We’re in Chicago on this beautiful Saturday morning and it’s already 90 degrees out, so I ordered this cold brew blended drink with house made hazelnut milk, frozen banana, coconut caramel (refined sugar free), vanilla, and sea salt. While this has more sugar than I would typically consume, its not full of junk or ingredients that trigger more inflammation for me.#paleo#grainfree#ulcerativecolitis#crohns#crohnscolitis#antiinflammatory
4 years ago I was diagnosed with colitis. This disease does not affect just your stomach, it affects your whole life!! I have to watch what I eat and have had to give up foods that I love😓 This disease is debilitating and it sucks!! Since I started this fitness journey my life has changed😊I feel better, I haven’t had a flare up in a month which is HUGE!! Just a few changes in our lives can make a dramatic change in our overall well-being 🧘♂️ if you’re struggling like I am I’d love to help. Life does not have to suck😣I am by no means an expert or a doctor, I’m just someone who wants to pass along what I’ve learned in the past month that has changed my life for the better in the hopes that it can help someone else😊🤗 please message me or leave a comment if you’d like to find out more❤️💞
Tomorrow marks two years since I was diagnosed with Crohn's disease, and it has me feeling all sorts of emotions. In some ways, Crohn's has finally become a fairly normal, routine part of my daily life; in other ways, it still presents a host of challenges that I will never be able to live my life without. Honestly, I'm not sure what I expected in regards to receiving my diagnosis. I guess I had visions that I would bounce back quickly and get on with my life within three weeks. But life isn't always what you expect it to be. Fortunately, since August 5th two years ago, I have bounced back. Sometimes I still have "bad days." But these days, as well as the better ones, have taught me to appreciate life's little things -- like eating food; walking my dog; sleeping on my left side; riding my bike -- all things that were taken for granted pre-diagnosis. And I have also discovered that I have a wonderful support system, a system of people whom I never would have connected with had I not been diagnosed with Crohn's -- from family members to friends to fellow IBDers to community members whom I didn't even know before. The other day, I was asked by someone, if you could take back your diagnosis, would you do it? This is still a tough question for me! Two years ago tomorrow, I would have said yes. Some days, I still think I might say yes. But in addition to the challenges, Crohn's has taught me patience, trust, perseverance, and resilience. It has taught me that no matter how terrible of a day I might be having, I will always have a community who is willing to stand by my side and help me through it until I am ready to get up and walk again. So, sure, I'd give up having Crohn's any day of the week. But at the expense of giving up the community that it's given me? Not a chance. 🎗#standupkeepfighting#dearcrohns
I’m going to get real with this post so be aware. As you know, I love love love my ostomy! I just didn’t love it quite so much this morning at 3:30 when I woke up to an ostomy leak! It’s not the first time I’ve had a leak and it won’t be the last. First, I swore, then I got out of bed and went into the bathroom to clean up. My bag was tucked into my pajama bottoms and the waist elastic had cut off access to the bottom of the bag. There just wasn’t any room for my output (and by that I mean poop), so it came out the side of the barrier. I’ll have to give a lesson sometime on appliances and how they work because I realize a lot of people don’t know. I got out of my soiled clothes, showered, and put on a new appliance. Then I went out to tackle the mess in the bed. Ugh! It was now 4:30. Adam’s alarm was going off for him to get up to go to the gym otherwise I would have sent him to the couch so I could strip the sheets. I kept thinking how it could have been so much worse. The last leak I had was when I was at girls camp last month. Yeah, that wasn’t fun, although there were SO SO many ways it could have been worse. So many! I had to tap in to my inner MacGyver. This time was worse than at camp so I was glad to have a shower and washing machine close by. I really don’t deal with leaks too often, especially now that I’ve figured out some things to help my bag to stick to my belly better. When I sleep is not the only time I get leaks but it’s definitely the most common. An ostomy is a new normal and it comes with its own set of difficulties. But I’ll take them ANYDAY over the symptoms I dealt with from Crohn’s that the ostomy alleviated. My favorite part about this whole story, yes, I have a favorite part, is while I was spraying spot remover on my pajamas and underwear Adam tells me, as he has done before, that I never need to be embarrassed. He’s always wanted me as I am...with Crohn’s, with an ostomy, with cancer. I’m a lucky girl. My second favorite part is that I got a shower in, even washed my hair, and now have clean sheets! 08/03/18.
✨ S U P E R F O O D ✨
• The term “superfood” is used quite loosely these days, but refers to foods rich in a variety of nutrients! I posted about Tigernuts the other day, so thought I’d break-down some nutrients in this #superfood ! Tigernuts are actually TUBERS (a type of root VEGETABLE!🥕 although they look & taste similar to nuts).
✨ VITAMIN E - Most of us know that vitamin E has anti-oxidant properties, but how? Well, this vitamin protects red blood cells and cell membranes from free radicals that cause oxidative stress ☄️🙅🏻♀️.
✨ VITAMIN C - Also has antioxidant properties & it increases the absorption of IRON 👊🏻.
✨ MAGNESIUM - Needed as a cofactor for many of the biochemical reactions in our body. Important in energy production🙌🏻, bone composition, muscle contraction 🏃🏻♀️, nerve signalling ⚡️& heart rhythm 📈.
✨ AMINO ACIDS - rich in Arginine, which helps dilate blood vessels & improve circulation💫.
✨ POTASSIUM - important in muscle contraction 💪🏻, ❤️ function & nervous system regulation 🧠.
✨✨BONUS: Tigernuts are rich in non-soluble FIBER. This binds to carbohydrates 🍕, toxins 🔥 & fats 🥓 & helps excrete them from the body & regulate blood sugar (more on this in another post!).
TIP: You can also use tigernut flour as a nutrient-rich alternative to GF or nut flour! I’m also going to try making a “nut" milk 🥛 with these!
A Buddha bowl a day.... this one in particular is making me so happy. .
Today’s bowl: Mango, organic peas, avocado, cilantro, dill, lime juice, pink Himalayan sea salt and a tiny bit of coconut aminos. Over rice.