thought i’d make a post of all the medications i have been put on so far;
- azathioprine (still on)
- prednisolone - humira - omeperazole - pentasa - adcal d3 - iron tablets
- clipper - entyvio (currently on)
- sertraline - fluxeotine (currently on) - circadin (currently on) - salofalk / pentasa enema
- IV steroids - modulen - buscopan
these are all the ones i can currently remember being on! i have only been diagnosed for 2 years now, but i’m so grateful for the selection of drugs we are open to💜
Do you know the effect of nutrition on your intestinal complaints?
In 2015, I was diagnosed with Crohn's disease. Stubborn as I am, I deliberately chose to try it without medication and went my own way. By doing a lot of research and using my own body as an experiment, I succeeded in developing a lifestyle with which I live completely pain- and complaint-free. To share this success with the world, I founded Crohnproof.
I have expanded my own experience with the study orthomolecular Nutrition expert where I have specialized in counseling people with chronic bowel disease. Many people have preceded you with wonderful results.
Curious about what we can do for you? We offer world wide online video consultations. Check the link in our bio for more info.
We are here for you.
Jeroen l Crohnproof
I’m curious.... does anyone have food allergies that manifest as dysphagia (difficulty swallowing)?.
Last fall I began having random episodes of this feeling of my throat swelling and difficulty swallowing after eating. My heart rate went up and I felt like my chest was heavy. After A few events I finally went to the ER and after a battery of tests was told that it was probably anxiety. A few days later It happened again and I wondered if it was acid reflux, so I took some Zantac that I had at home (which is a histamine h2 blocker). My symptoms improved so I thought maybe I had acid reflux. During my last colonoscopy and upper endoscopy I had a little device implanted in my throat which lasted 48 hours and tracked my acid levels. The report showed slightly elevated acid but nothing to have concerns about. What is weird is that I’ve never had the traditional “burning” sensations and that Zantac always seems to help only a little. .
For the past 8-9 months I’ve continued to have random episodes of dysphagia, trying acid reflux meds and really not getting any relief. One day last week I had an almond flour breakfast cookie, later some PB on an apple and later in the day had chocolate covered almonds. My dysphagia was crazy bad and Zantac really didn’t touch it. Then when I began to piece the past year together I realized my reactions were mostly happening after eating nuts or eating out. I began to think that maybe I have a good sensitivity or allergy and that’s why a H2 blocker might be giving me a little bit of relief. I’ve eliminated nuts as much as possible over the past few days and my dysphagia is minimal and my mini flare has really improved! I had totally solid 💩 with zero blood this morning. Still having occasional pains but so much improvement! I’ve made an appointment to discuss food allergies with my allergist next week (along with some environmental asthma I’ve been having with this crazy wildfire smoke we have in the PNW). .
But I really want to know if anyone had similar reactions to foods!?! Please share your experiences!
So many of us will know @kristenschronicles and her story. You’re an inspiration, we feel so lucky that you share your journey💜. We all learn and grow here, but it’s amazing to see your level of strength - on your good days, bad days, and everything in between. Sending every positive thought your way - Thank you for everything you do!
And this little shoutout is also here because, as you recover and move into your next phase...I did want to give you the credit for these products🙂.
I planned to change to more natural products for a long time. I switched to @renpure for shampoo/conditioner. Much more affordable than I was expecting! I hope it’ll be possible for my hair to get to a better place.
I use @vitalproteins collagen in my smoothies - Looking forward to trying more of their products👌. Thanks for reading my pre-bedtime thoughts 😴.
Life update: I’ve got some very active disease going on. BUT. I’m going to get Entivyo every 4 weeks to hopefully calm that down and avoid surgery. I also signed up to donate any blood, stool, biopsies, tissue- whatever to help further research IBD at Mayo Clinic!!! IM SO EXCITED ABOUT IT!! Anything to get us one step closer to the cure we all long for! #IBDwarrior#yesterdaytodaytomorrowforever
Throwback to 2 years ago!✌🏻 I’m still on vacation, so I’m living the dream through my old pictures😂 This lovely blurry one was taken with my old iPhone 4s🤭
I was practicing taking my blood pressure for my first ever OSCE! In med school, time goes by so fast! I feel like this was yesterday💩 I remember when I took this picture, my friend was making fun of me because I was taking a shameless selfie😂 I told her hat I was rather ‘‘documenting’’ my life😅 2 years later, still no regrets! I think that it’s always fun to have pictures to remind myself of certain times in my life🔮 I like making memories, especially in med school where time literally flies. I’m a nostalgic at heart!💜 Are you?🤔
Farewell to Hopeful
Hopeful is the name I gave my IV catheter. In January, I was put on total parenteral nutrition, which basically means I’m being fed intravenously. I have Crohn’s disease— an inflammatory bowel disease and my doctor doesn’t want any food/waste passing through my colon. The goal is to heal ulcers in large intestine. I’m so very grateful for TPN technology. For 8 months, Hopeful has been my constant companion, pumping nutrients through the veins, helping to keep me alive. Shrouded in a purple backpack, she went everywhere with me: work, church, news set, movie theater, airplanes, running trails and more. When we first met, I didn’t know if we would get along. Sometimes Hopeful made me angry, a reminder of the chronic condition I’ve fought for decades. But as time went on, I got accustomed to carrying around 10 pound bag of IV liquids. Hopeful became a symbol of my struggle and success, my beacon of hope. The rhythmic hum of the IV pump lulled me into a place of calm. But at last, we must bid adieu. Hopeful is infected and hurts. So, I will get the device removed tomorrow. The plan is to start enteral feedings—mostly drinking medical shakes, eventually working my way back to eating real food. I can see the light. No word if there will be a Hopeful 02. The only certainty is that I will continue to remain positive and fight for a cure. #SonyaStrong . #crohns#TPN#CrohnsWarrior#ibdwarrior#blessed
I’m actually tethered to an IV right now (#Remicade ) and awkwardly typing this with my left hand, so I’ll keep it short.
I ran the #bridgeofthegods 10k this past Sunday and placed first in my age group (9th by gender/35th overall) with a chip time of 51:23! The night before the race, I didn’t even think I would be able to get up early and run. I am due for iron infusions and currently undergoing all sorts of tests related to low WBCs, on top of experiencing symptoms of active inflammatory bowel disease and struggling with some micronutrient deficiencies. All this to say, it was an extremely challenging race.
My thoughts during the event: “Don’t pass out, don’t have a heart attack. Just keep moving. Oh, and fuck you, ulcerative colitis.”
“You must live in the present, launch yourself on every wave, find your eternity in each moment.” - Henry David Thoreau.
Sometimes when things aren’t quite right and our bodies frustrate us we are caught up with where we should be. Sometimes what we need to experience is the present, the little steps we can take right now to bring healing to our bodies and souls. The ability to accept and live in the present is the beginning of a life of gratitude. It’s something we can all improve upon. .
What helps you stay rooted in the present moment? For me, flowing with my breath, meditating and putting away my devices seem to be the biggest instruments for getting into the present moment. 🙏🏼
Hard to believe I've been doing this for almost 4 years. I used to hate this, but I've come to enjoy my time relaxing and watching Netflix while I get my remicade infusion. I have so much to thank for this drug. I've been in remission because of it and it honestly saved my life. My only side effect is knee pain and it is well worth the pay off. Fingers crossed it keeps working for a long time.
I also learned to never ever schedule another evening appointment and to stick with my afternoon appointments. I had no choice because I needed to get it sooner because I leave for vacation in a few days, but having it on a week night and trying to get up for work this morning was impossible. I couldn't sleep last night because knees were killing me, which is normal after my infusions. But I learned my lesson and will never do that again. #crohnswarrior#remicade#chronicillness
I was hanging with Dr. Tom O'Bryan this past weekend. His new book about brain health will be a good read with easy tips to reverse the damage from leaky brain. If you have leaky gut, you have leaky brain. If you have IBD. Crohns or colitis, you have leaky gut. But first, have you watched Betrayal yet?
It's a must watch.
Regrann from @dr.tomobryan - “Autoimmune disease isn’t one hundred different forms of disease. It’s one disease. It’s just that it affects people where they’re weakest. It hits them at their weakest point.”
—Dr. Peter Osborne @drosborne in “Betrayal: The Autoimmune Disease Solution They’re Not Telling You.”
Here I am again. Waiting for my Infliximab infusion.
I'm going to be honest I'm pretty disheartened about it these days. I saw my surgeon a couple of weeks ago and I can add a fissure and ulcers to the list of ailments. These are things the Infliximab is designed to target so, although it was working on some aspects it's not on others and in fact they are getting worse. The pain is quite something.
He told me he can't offer anything surgically apart from a (colostomy/ileostomy) bag and I'm not quite ready for that again.
So here we are...ugh
Sorry for being a bit of a misery x
🇬🇧Below. Paleo/AIP on the road!🚂
På tåget för 2 dagars mässjobb på Stockholm Fashion District. Jag har varit uppe sen 04,45 och det gäller att grunda bra för att orka de långa dagarna som kommer. Och av erfarenhet kan jag berätta att mässmat inte är den bästa🤮. Speciellt inte om man har vissa restriktioner. Jag förväntar mig att kunna hitta te, vatten och möjligen sallad. Annars finns det mest mackor…😔
Så i vanlig ordning bär jag med mig mer mat än packning! 😊
Tågfrukosten idag blev matiga tekakor med prosciutto🥓, bolón de verde 🍌(kokbanandumplings AIP!), kokosyoghurt 🥥med tranbär och chashewnötter och te☕️. Nu står jag mig definitivt till lunch.
Jag har också packat kokta ägg, mer och annat bröd, vildmarksgratäng, iste, nötter, frukt och mer av allt jag åt till frukost. Jag lär inte svälta.
Jag har definitivt lärt mig det här året att det funkar bra att resa och äta Paleo/aip 🚂🛥🛩. Men jag har inte lärt mig packa med måtta. 🤷🏻♀️
🇬🇧I’m on the train to Stockholm to work a fair at Stockholm Fashion District. I’ve been up since 04,45 and had this for brekkie. 🍞🥓Paleobread with prosciutto, 🍌bolón de verde (plantain dumblings AIP!) 🥥coconut yoghurt with dry berries and cashews. And tea☕️. As always, I’m carrying more food than regular luggage.🤷🏻♀️ I think I will survive these 2 days. 😊
It is amazing what a little Prednisone and a lot of rest and love can do! This time last week we were getting discharged from @houstonmethodist after spending 6 nights there with a mini-flare in my small intestine. Now I’m wishing I was back in San Antonio eating an entire basket of bread at @thegrill_leonsprings and worshiping at @crossmountainchurch!