My Crohn's Disease Story | 2015 - 2020 | LIVING WITH CROHN'S
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- Опубликовано: 4 окт 2024
- I hope this video helps you guys if you’re new on your journey or want to be able to relate to someone else! I was so fearful and in so much pain when I had no idea what was happening to me. I really struggle with staying positive sometimes so I’m trying not to dwell on those moments of intense fear, but just know that if you’re watching this and going through a time where you’re fearful, it will pass and we’re in this together.
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I manage my Crohn’s disease with just diet. No surgery, no drugs. I eat meat, some vegetables, some fruits and nothing else: No bread, no cereals, no potatoes, no rice, no sugar, no alcohol, no oil, no dairy, no sweets, no coffee, no soft drinks, no fried food, no chocolate, no anything processed, not even a tiny bite of these things. I do have some social problems (friends believe that my diet is weird, and sometimes I go to places where there is nothing that I can eat), but it is wonderful to be pain-free, and healthy. And my diet is not a sacrifice to me, because I got used to it and I adhere to it with religious zeal, so there is no possibility to relapse or return to an internal struggle by tasting again food that reignites an addictive behavior.
Wow, I need to have your conviction about this commitment. I've had an opioid addiction for years and years, but changing the way I eat too treat this IBD, I'm finding it much more difficult than kicking the dope, but as you said at the end, it's also an addiction. Stay well and God bless.
how many grams of carbs do you think you get in a day?
So what do you eat?
How long have you been diagnosed? .. and what was the level of disease at that time? .. Because I too thought I had defeated the monster.. not only was it not true but actually added guilt as I believed it was my fault ..
Smart this is how humans are supposed to eat. Hope you are still well. My medical issues causes me to eat only meat bc most veggies cause digestive distress
Hi Emily 45 years with CD, still going strong 💪🏼 wishing you all the best for the future.
Was just told I have crohns a few weeks ago after being on H pylori medication since may , it’s so comforting to hear from someone who literally understands what you’re going through ✨
Hope you’re doing better.
Thank you so much Tiffany, I'm sorry I'm not so great at responding on here. Working on that! :) I hope you're feeling better!
@@EmilyBeck I had an H pylori infection back in 2020 and it was horrible what with the ulcer causing constant nausea and vomiting. I had a colonoscopy in january 21 which showed polyps and as a result I recently underwent a right hemicolectomy only to find that the polyps were benign so I went through this pain and suffering for nothing.
Hi Emily. I’ve had UC for 27 years. My daughter was diagnosed with Crohn’s when she was 5 as well. We’re still going strong. You should always remember the medicines for our illness are getting better all the time. Good luck for the future. Thanks for the video btw.
You are so brave to share your story. Thank you! I have been living with Crohn's for 20 years now. Most recently, I am determined to heal my gut and figure out how to be disease free with only food, instead of regular Remicade infusions. God Bless you!
Since I'm not a female I don't have to worry about UC or chronhs but despite girlietube saying only females can get H pylori I d id end up getting that in 2020.
IN other words I'm sick to death of females on youtube(aka girlietube) treating these illnesses as exclusively female problems when that stereotype is patently false. females moreso than males crave the attention of posting aboujt it to their female peers on girlietube.
How's it going? Are you successful?
well, it seems to be so far, I won't know for sure until next spring. I will be seeing a new doctor and will talk to him about changing my meds or allowing me to go off (Remicade) altogether to see what happens. My current doctor (who is retiring next spring) is not willing to let me try anything new, as he feels what I am doing is working. Long winded answer, I apologize. In the meantime, I have taken on a new lifestyle of IF and I feel great! Best of luck to you in your journey!@@ghost_of_a_dead_poet ❤
Going through this ilness you are not bitter! You are so sweet,helpfull and so beautiful....good health lovely,take care
Hi,I have been diagnosed with ulcerative colitis so I know the struggle, how painful and difficul it is.
There is a book called "breaking the vicious circle" it's about a "diet" or more like a protocol to heal our gut.
There is also youtubers, "heal your gut guy", "a gut feeling" and "kenny honnas" who share their stories and how they got into remission.
Good luck on your journey and thank you for sharing your story !
Thank you so much for sharing and I appreciate you taking the time to comment :)
Heal your gut guy is an absolute quack.
Something worth checking out: a Crohn's flare-up made me lactose intolerant. When eliminating foods to see what's making the symptoms worse, check your lactose tolerance even if you have no history of issues with it.
You can never offer tmi in these medical videos. Thank you for sharing your story.
Thank you Riccardo - best of luck with your tests!
I was diagnosed at 23 too, but I had Crohn’s from the age of 16. I didn’t go near the doctors, huge phobia from childhood. I was that sick and my bowel that ulcerated that I was diagnosed by the gastro dr before my colonoscopy, when I finally went to hospital. The colonoscopy confirmed his diagnosis. Two month after I was diagnosed my bowel perforated, it was to damaged to handle normal bowel motions. I’ve had this chronic illness for 29 years now, I don’t remember being well at all. My Crohn’s is classed as moderate to severe. I have arthritis in my fingers (from age 21) and in my knees (age 28), my knees are bad. I was 45 kg until i was 26, 65 kg until 2015, then I went to 112kg, I’m now 90kg. So, please watch out for extreme weight gain, same as extreme weight loss. I also suffer from fatigue. It sucks but we have to live it, no choice, so find humour where you can 👍🏽
How to gain weight?
Thank you for sharing your story. I hope that we all learn the best path for our journey.
I ❤ this video, Emily. So thankful to you. I have Crohn's Disease and my major surgery is next Thursday 21.09.23. I'm having a total proctocolectomy followed by surgery on my small intestine. I take Adalimumab 40mg every second Thursday for my Crohn's but during my admission I am told l have to stop. Along with Crohn's, I also have Rheumatoid Arthritis and Meneares Disease. I really like, admire and respect you and wish you the best in good health and happiness.
No need for surgery, all your body needs is raw kefir or sauerkraut! It stops the pain & inflammation of the bowels ✌️
Cbd made a difference to me in terms of nausea, with UC. wishing you are in a better part of your journey 😊
Thank you so much for sharing your story. I went through the same for over 5 years and only diagnosed 3 days back. Hopefully the elimination diet will help me get back on track. God bless you and everyone
Thank you for telling your story. I totally get you.I was diagnosed with Crohn's in February 2021,I knew nothing about this Disease until I read more about it and the Doctors explained to me carefully. I Couldn't believe I had a IBD. I had my first flare-up in June 2022 ,my body was deteriorating, I felt it all and it was Horrible, to the point that I had to be hospitalized. I had a ton of body examinations, including stool and Blood tests, pills to take and I was getting really emotional. I just wanted to get better ASAP.
After a month I was already getting better and much stronger. I started to eat well and do some workouts. Thank God I feel much better. From time to time, it is good to do some check-ups with your advised doctor to have a better control of Crohn's😊
Thanks for sharing your Crohn’s journey. Thanks for the dietary tips as well. My best to you on your journey!
I was diagnosed 2 years ago at the age of 19 I am now 22 I’ve had my Gaul Bladder removed had one IV Infusion treatment, 2 colonoscopies, 2 endoscopies, 2 MRIs, 11-13 treatment Stelara shots annual blood works check ups so many I’ve lost count I do it every 2-4 months and I’ve also now been diagnosed with Osteoporosis, Fibromyalgia, and Inflammatory Arthritis so many bathroom emergencies and 5-6 accidents and I have an on the go Emergency Crohns bag wipes extra clothes, perfume, medicine, mask, hand sanitizer, hand sanitizer alcohol spray, bathroom access card to show people at the establishments you have a health issue that allows you to always have access to a bathroom and my credit cards and my ID and my insurance card and I have a medical bracelet it’s hard but push to get tests done advocate for yourself get diagnosed take your meds and do your treatments and get support and knowing you are not alone is key just because you look okay doesn’t mean you are okay ask your doctor about anemia because due to the lack of vitamins and nutrients and nutrition you can become vitamin deficient and lose iron and it can cause you to become anemic.
You will hear maybe it’s IBS NO NOPE NO IBS is NOT Crohns you have Crohns.
My Medications
Stelara (Injection every 8 weeks)
Azathioprine (3 times a day) (50 Milligrams) ( 1 capsule 3 times a day)
Hyoscyamine (As needed) (0.125 Milligrams) (1 tablet every 4 hours as needed for abdominal spasms)
Diphenoxylate (4 times a day As needed) (for diarrhea)
Dicyclome (1 tablet 3 times a day as needed for abdominal cramping) (20 Milligrams)
Omeprazole(1 time a Day in the morning) (40 Milligrams)
Tumeric (1 time a day)
Acetaminophen Tylenol #4 (Codine)(As needed every 4 hours if pain is severe severe)
Anxiety (Symbalta) (1 time a day)
Regular Tylenol Arthritis Strength (4 times a day)
Pregabalin Lyrica (1 Capsule) (3 times a day)
Nature made D3 (5,000 IU) (125 mcg)(2 Capsules every morning once a day)
Duloxetine Delayed-Release Capsules, USP (60 Milligrams) (1 capsule 2 Times a day) (Anxiety/depression)
Sulfalazine (500 Milligrams) (1 tablet 3 times a day)
Vitamin D2 (1.25 Milligrams) ( 50,000 UNIT) (1 capsule once a week every Saturday)
Methocarbamol (500 Milligrams) (1-2 tablets by mouth at dinner right before bedtime) (optional) (muscle relaxer)
Do NOT take anything but Tylenol AVOID NSAIDS TYLENOL is BEST for people that have Crohns.
Look up balance of nature for nutrients and vitamins it will help.
You will have to do steroids such as prednisone it sucks but you will make it through it there is a light at the end of the tunnel the moon face the sweating the anger the mood swings and side effects will not last forever you will get off the steroids and the colonoscopy drinks are hell but once you keep them down and get through the night before the colonoscopy after your colonoscopies life gets better those were the worst parts so far for me the never ending part for me that I’m still going through emotionally is having to do blood work and waiting to here if the levels and blood panel results are still okay it’s nerve wrecking getting a support system is key and it will help throughout the journey.
Remember it will be okay and it is okay to not be okay but don’t let your disease stop you from living your life and being who you are because you are not your disease and take it one day at a time.
Hello.. I m Sowmya.. me also suffering from IBD from last 2 years.. what is the best treatment for that.. please tell me.
@@sowmyaacharya8110 hi planet ayurveda best
Can anyone help me iam also struggling with Crohn's
I really need help from others
Hi. You are so brave. Will you please share the issues you were facing in 2015 when you had first colonoscopy. All my prayers are with you. Always stay blessed.❤
It’s so nice to be able hear someone who struggles with the same things I do! It’s so nice to know that I’m not alone in these feelings. I definitely get what you mean about the burning cramping feeling and not being able to move. And colonoscopies and clean outs definitely suck. You want to get checked but it always makes your symptoms even worse.
love this Em 💜 keep at it ! Cheering for you ! you got this !
Thank you so much!!
Yes, to the diet video! I’ve had pretty debilitating issues in my gut since May of 2018 with no answers. Like you, I’ve been poked and tested a billion times. However, I have my first colonoscopy scheduled in 3 days. I only have 1 bowel movement a day, and I know a huge sign of Crohns is excessive/urgent use of the bathroom. I have a “grown up” job, and I’m terrified that I’m going to have to leave eventually because of my stomach issues. I’m praying that something helps, but based on 95% of my symptoms, I truly think it’s crohns.
I’m sure I’m not alone when I ask that you definitely get a bit more detailed. Although I feel terrible that other people aren’t feeling well, it gives me so much relief to know I’m not crazy! Best of luck with your health ❤️
I so hope you find peace and answers soon! I'm glad you liked the video :)
Thank you for the video. I was just recently diagnosed with UC and I also do the sourdough bread and eggs , and just sticking to the low residue diet. Unfortunately mesalamine did not help me so I might need to go on a biologic as the steroids aren’t helping too much the Iv steroids were helpful but not the tablets . I hope you are feeling better and in remission and not on any flare ups. I agree it is so hard to get treatment . I couldn’t believe how hard it was to make appointments and see the specialist.I noticed stress caused the flare ups to be worse .
The worst thing about colonoscopy for me is the prep, it's like drinking warm sea water, yuck, and you gotta torture yourself little by little getting down being by a bathroom, sorry about not having the anesthesia, that's gotta be horrible, I pray you're doing better with this, I suffer with ulcerative colitis, I'm on azathioprine trying to get into remission, it's so much better but the side effects are concerning, constant blood monitoring.
Any updates? I am also and Azarhioprine. But I keep having flare ups
@@rafaelcenteno7892 I'm still taking it, but I'm taking it with the mesalimine enemas which helps with the blood loss in the stools. It was working okay for a little bit but then I got an ear infection that lasted a couple months and I had to take antibiotics for a month and the only thing that helped with the pain was Advil which is a no no to take so it kinda messed me up. I don't see my GI doctor until the end of December and I might try to take something else or get on steroids for a minute and keep trying the azathioprine. It was working a bit at first but my GI doctor also said that if my blood work was good there's something else that they could add with it that has helped people. May God bless you and this struggle 🙏
Hey Emily! I think you could do ASMR videos, seriously. Your voice is very calming. Well, I stumbled upon here, because I’ve been living on Imodium every day due to chronic diarrhea for six months. Clean colonoscopy, bloodwork, and fecal calprotectin test. Doctor says it’s “just IBS”! Frustrating.
How much is ur calprotectin level ?
Love this!! I would love to see a video about your diet, like a “week in the life” kind of thing for what you eat on a daily basis/what you normally watch out for. Keep it up girlie!!!
That's a great idea! Thank you lovie :)
This is so great! Get it girl 💖🦄
Thank youuu!
I think I may have chrons but due to me being overweight before the pandemic and the meds I take cause weight gain my doc ruled it out. I don't get fevers but I get every other symptom
I agree w all those who advocate a diet based approach vs palliating w drugs cuz you refuse to try gluten- free for example. 2nd suggestion; find a homeopath and a functional med/ health coach. Usually both are a wealth of knowledge and can have near miraculous results.
Thank you so much for sharing Your story.
I hope you're doing well ❤
yes get tested for food allergies and drink a quality kombucha every day, do not drink coffee drink kombucha instead. trust me I been dealing with this for 20 years
Kombucha is very yeasty; many IBD sufferers have an overgrowth of Candida so the kombucha can make it mutch worse actually. Learned my lesson. But homemade kefir from unhomogenizred milk is much better for microbiome. See work of Dr Marco Ruggiero .
The antlers behind your head are funny! You're a brave woman to discuss. I'm working on my story too. {{Hugs}}
Thank you so much!
Ver helpful. Thx
Have you tried a liquid diet? I have added athletic greens to mine and have noticed an improvement in brain fog. Its not a meal replacement, which is more what I am looking for.
Yes I have! I did the Absorb Plus shakes at the recommendation of my doctor.
Thank you for sharing!
Thanks for watching!
My name is Katie I have crohns really bad I hurt too. I walk alot too. I was in and out of hospital too😢😢 I would love to learn more what you do too. So maybe I should try what you do too. Does your stomach roll alot my does it I hate it too
I actually got really sick after colonoscopy. I think there was some kind of cross contamination with the instruments because my GI and microbiome got really messed up immediately after…
Im being told i came out negative last colonoscopy, but i have all the same stuff as you did, plus gerd and non alcoholic fatty liver disease. All year, I've been sick on and off.
I was diagnosed with crohn's last week. My doctor and dietician have asked me to take palaya sadam for breakfast which will give good bacteria to your stomach and avoid non veg. I recommend the same for you
hello, what non veg means can you explain that ?
@@anhlien3197 all meat beef, chicken, pork, mutton
@@pravinrajkumar2234 and yoga will help a lot
veggetables need to be well cook or raw like salad ?
@@anhlien3197 yes vegetable need to be well good. Raw vegetables will hurt you stomach, avoid raw vegetables.
imodium makes me so sick and does nothing as well!
no way immodium is amazing. one time i had horrible diarrhea like i literallt couldn't eat or drink anything and it would immediately be expelled, i took immodium and it literally stopped immediately after taking it
God bless you Emily
5 years meds free, over weight, often drinker, eat pretty much what I want apart from spicy food and hi fiber foods.
Important
Learn to control stress,
Make sure you get enough sun/ vit D
Fast when flare ups start
Avoid sugar= never fizzy drinks
Ground yourself often, shoes off on natural ground.
Thc oil occasionally.
Fasting till symptoms ease is important
+ avoid heavily processed food at all costs,
Mildly processed food is ok in moderation
Subscribed! :)
What your diet is like
Amazing RUclips video ).
I was diagnosed with chones in 2017. Tried pills then put on humira now it's not working so well see.
Have you checked wether you are allergic to gluten?
Were you just losing weight without trying?.... i’ve been having a regular stores I have like burning in my abdomen but I never knew it was associated with someone to a G.I. doctor she said that she didn’t like it was necessary to do a colonoscopy but I’ve been just losing a lot of weight for no apparent reason it’s like I’m not observing my food 🍲 what do you think
Hi dear Emily how you doing these days. I am having pain around my waist and stomach for over 3 years now. I have gone through every test you can imagine..they have not found anything. MRI. CITYSCAN. BLOOD TESTS.BREATH TEST. ANTIBIOTICS. COLONOSCOPY. ENDOSCOPY. SONOGRAPHE...I have done these tests 3 times except colonoscopy...and now I am going for more CT scan and breath test again and I can't take it anymore....I hope you are doing great....
This is so frustrating and I’m sorry you’re having this experience. I am familiar with others who are going through a similar process and it can be so heartbreaking. Make sure to take some time for self care and know that it’s not all in your head. I’m sending lots of love and thank you for being here 🤍
my best friend is having colonoscopy and she has ibs,crohns,lactose and gluten intolerant
POGGERS!
John here, philippines, ty , do you agree soil base probiotics helps Chrons?
Many might benefit if they saw a allergist before diet damages your body.
Hii madam
Iam a Crohn's patient struggling with this disease mentally and physically please help me out in this struggling
I hope you will help with your diet and other plan
Blend 1/2 fresh potatoe add a piece of celery and add a little water just to make it a half glass drink one In the morning an one before bed for 20 days raw potatoes heals the scars an irritation
What is that thing hanging on the wall behind your head?
She’s clearly a big game Hunter
Try kefir 😊
what does tmi mean lol
Too much information
i im in love with u
Get on the carnivore diet
everyone here should buy weat belly book and you will heal and have the info needed to heal and eat normal again, god bless you all my online friends
19 currently working with gastro lost 45 pounds in a year
How bad is the colonoscopy prep, I feel so awful and nauseous everyday I can’t imagine doing the prep
Hi Briee - sorry for the late reply. The colonoscopy prep isn't so bad. I hope you got through it and it went smoothly for you!
The prep made me very nauseous. They did offer a medication to help with the nausea so you will have that option. It is so important though and it is only one day . Speak with your doctor for nausea medication to help your symptoms so you get some relief .
Briee Star - do a google - there is one prep with an additive you must avoid. I cant remember what it is.