Living With Crohn’s Disease: 1 Woman Shares Her Struggle | TODAY Original 

I’m a former soldier, athlete, avid surfer. Self employed, dad, husband, just an all around active, healthy 36 year old. Crohns hit me like a train out of nowhere this year. I’ve survived with wounds from war, bad injuries from spots. You name it. This disease has me in torture like I’ve never known. Total helplessness, like a slave to the pain that your own body is causing. Take it from me, I know your pain. I’m at the height of my life, and this disease side swiped me.

I was 22 when diagnosed, and I’m now 50. It’s been a long road, but so thankful to still be here.💪

I’m 13 and going through middle school with Crohn’s disease, I look like I should be in 5th grade and nobody knows what I’m going through at my school

As an 8 month pregnant soon to be mother, one of my biggest worries is that my future son will develop Crohn’s as well. I am hoping that over the next few years’ technology can help prevent the effects. Seems like the space is already working on something for young children (I remember reading about a clinic trial at Soligenix for pediatric crohns) I am hopeful there will soon be a cure.

I have crohns and I just want to say this gives me hope 🥺

I was diagnosed with IBS and then it turned into ulcerative colitis. After 11 surgeries I now have an ileostomy bag and living my best life. I almost lost my life many times and I got very very down for a long time. But I’m so much healthier & happier today than I have been in 23yrs. I’m so lucky to be alive. I’m so grateful you made it to the other side too! Our mind is deeply connected to our bodies.

I was diagnosed when I was 10, I’m 16 now, and I’ve recently been going thru the worst flare up I’ve ever had. Like... immeasurable pain. I’m so scared that I’m going to need surgery one day. This video helped me feel less alone; thank you.

I've had Crohn's for over 17 years now (currently 39) and this woman's story hits home, her description at the beginning of how unpredictable the disease is is so accurate. The pain is indescribable, I've had flare ups that are so intensely painful I can only describe it as having a gunshot to the stomach, and there's a knife going into the gunshot and twisting for 7 hours or more. I have so much sympathy for people who suffer from this disease it is absolutely horrendous and it upended my entire life & career as a successful chef

I'm here due to my husband being admitted for a week. Just released from hospital yesterday. Please keep him/us in your prayers

My cousin passed away at the age of 48 taking the same treatment.. she had a family and they had to let her go at the Cleveland clinic... she was not allowed to live her full life at all she was a very bright and beautiful shining star... what a sad thing this was for everyone for her family for our family for me. This disease destroys I hope everyone realizes that.!

I am 18 was just diagnosed one week ago, thank you for this interview it gives me courage and has made me feel seen

Fantastic video Nicole. Just been diagnosed in February 2021 with Crohn's Disease. You are. a strong and inspiring role model.

Go Us Bumby’s; I’ve had crohns most of my life but wasn’t diagnosed until I was 20 and I will be 29 in July. Every day I live in pain and no one on either side of my family has it or anything like it. Stay strong my fellow Bumby.

It's very tough to deal with this condition and for others to understand what you go through day to day. I was diagnosed 1 year ago. Prior to diagnosis I was a new, aspiring mechanical engineer. Life was put on halt since being diagnosed. In and out of ER and hospitalization +8 times already. The pain is at times unbearable. It makes you want to crawl into bed most of the day. The noises of unwanted gut movement is embarrassing. Tried the Remicade. Now on Stelara and having to get back on prednisone as the new med starting to be less effective for me. Diet now limited with a restriction from high in fiber foods such as leafy veggies. I occasionally mix blended kale and spinach into non dairy soups to get the nutrients that veggies offers without having to digest whole leafy plants which are stressful for constricted small intestines. Eat grilled or steamed fish, eggs, or soft rotisserie chicken for protein. Cut the red meats to a bare minimum and only when craving. Cut out fried foods. Limit sweets if you can. Thankful to God I was able to qualify for state and county health insurance. 98% of all medical costs are covered!! Being out of work this is a real life saver. Think of this, each hospital visit averages $10k and each dose of Stelara costs $22k!! All covered by medi-cal (aka medi-caid). Even good private insurance will cover a bulk of the costs, but there are co-pays to meet that can add up real quick. County insurance has no co pays!! Very thankful for this program and am willing to continue the fight to recovery. Have many more years to look forward to including a future family to have of my own one day, and to continue pursuing a career I barely got my feet into. I hate having to depend on financial assistance given that I was a really active and abled person who went to the gym 4 days a week, hiked, snowboarded, had a full time job, had a social life, ate very well, traveled and wanted to do more travelling having a solid stream of income that was starting to come in. Life is not done until I accomplish those items off of my bucket list. They can take the years away from me, but they cannot stop my drive towards success and my love for God.

You're such a strong woman.

Going through the same process with both of my daughters. May God’s blessings continue to be upon you, and thank you for sharing your journey ❤️🙏🏽

I was diagnosed when I was 11. I had part of my colon removed twice. I’m 33 now. No one really understands what I’m suffering through because on the outside I look normal enough. I’ve pushed away so many friends and relationships over the years and have settled in on the introvert life . I’m just a drag because I’m usually feeling ill and they don’t want to deal with or understand it. I just tell people I’m fine even though I’m feeling terrible just to avoid their sympathy. The psychological aspects are real. I feel I’ve lost out on so much over the years because of just how weak it’s made me. Healthy people should cherish that they don’t have to ever understand what it’s like. I wish I knew. That said I consider the success that I’ve had in my life an extra achievement having gotten where I am with the disease. Never give up or underestimate what you can do despite the things in life trying to hold you back. Your will to strive to greatness will prevail

Omg you're really inspiring!!! Thank you for sharing your experience with us 🙏

Your strength and positivity is so inspiring. Thanks so much for having done this video.

Thank you so much for sharing your experience, I was diagnosed 6 months ago and I get flares now and then I’m really struggling to cope, emotionally and psychologically I’ve started seeing a psychologist now hopefully I will understand better. The pain, vomiting and diarrhoea is worse and I’m that person who losses weight very fast I’m even scared of myself now…keep the beautiful honey and thank you so much for sharing 😍🙏🥰

I’ve had Crohn’s since 2007 and I’ve had two pregnancies since then one was traumatic and I seizured second was all natural no drugs and I can confirm Crohn’s pain is WORSE than labor pains. Labor pains don’t last but Crohn’s pains you have to wake up to every day. With no hope of killing said pain.

Hope you all getting well . you are so beautiful and strong girl I can imagine how many people you inspired .🌺🌞I’m here because of my best friend’s brother who has been diagnosed with Crohn disease god bless you all

Its so nice to see that there are brave people out there fighting this thing,, thank you

I was diagnosed at 13, I’m 20 now. It was really hard to begin with, but thankfully I’ve discovered the right medication for my body and I’m doing much better now. Daily pain is still an issue, but it’s manageable now.

Wishing Nicole to continue to fight and get stronger.

💪🏼Crohn's warrior!!!

This 🙌 Literally brought me to tears. I’m 30 and it took years to finally get my diagnosis. I start infusions on Tuesday and will get them every two weeks. Absolutely terrified. But this really made me feel not so alone anymore.

Thank you I’m so scared just listening to your story really help me

Well done! Thank you for sharing. Just you words have helped me on this day of struggle. 👍🏻

What an strong women🙏🏻

Diagnosed as an older individual (50). While this illness has taken a lot of my energy and affected my joints negatively I remember to be grateful for the medication I’ve been able to get and what I can still do each day. I work full time as a legal assistant in civil litigation and it hasn’t been easy but I am marching through. In life there is no one to feel sorry for you. You just have to give yourself a little grace and keep pushing to find what works.

Thank you for sharing.

What a great empowerment!!!! Kudos to this lady, sending my virtual hugs and love to all chronic disease warriors! I'm an autoimmune warrior as well. I'm coping and dealing with IBD, Arthritis, Chronic Gastritis, IBS, GERD Anxiety, Panic and Anxiety Disorder, Depression, and Grade IV Spasmophilia. These symptoms frequently flares up and make me go to doctor and hospital for almost every week. I know I need to control myself to deactivate the symptoms and yes, it's hard indeed but I will do my best to keep surviving and keep fighting to be friends with these conditions and hope I could tame it... I'm a legal analyst btw and yes, working or even living with stressful minds sometimes can triggers the symptoms but I always trying to control my mind to enjoy life to the fullest because sometimes brain plays trick, said my psychiatrist. Well I'm on my way to take humira in the next few days as conventional dmards and steroids didn't work well on me and I hope I could reach into remission as soon as possible However, I still love myself and everything in me, no matter what Be happy and stay healthy!!!

I have had Ulcerative Colitis since age 5!!! I understand everything you are saying. Thank you for sharing your story xoxo

YOU are lucky you find ways to live with this disease. My son was diagnosed with this disease when he was 13 years of old. But still he is struggling. He couldn't stop himself the food he likes. But now he has patience he did eat what wants. I'm hoping when time will teach him more.

I'm a 32 year old man and I was getting teary just listening to you. I'm currently going through a flare up, it started maybe 30 hours ago. I'm tired, hungry, sleepy and in pain. I can't sleep well because of the pain and, currently, even drinking water causes movement and it hurts. My job is quite stressful, I currently work over 60 hours a week. I'm very reluctant to get medical help because of co-pays, last time I went to the hospital for a flare up it cost me $4000 in copays, I even used Uber to dodge the ambulance fees. I feel like I can't leave my job because I need that money for emergencies. And I feel like my Humira treatment isn't working as well anymore since I've been getting flare ups more and more often but seeking other treatments is very costly and time consuming. I feel like I'm against the wall and my only solution is to just suffer every now and then. Thank you for your words and efforts to spread awareness. I hope one day I get better quality of life for me and my family. And ideally less pain.

I truly understand what your going through. I've was diagnosed with Crohn's disease when I was 27 and it has been a very long and very painful road. With having major surgery for small and large intestine with fistulas I struggle with the pain every day

Thanks for sharing your story! I’m deathly allergic to all nuts and am not deathly allergic to all dairy. Thank you for sharing your story. Chrones disease is serious and you are a trooper. Good for you!

Omg thank you for this video!! I’ve had UC since 1993

My little brother (8 years old) was recently diagnosed with Crohn’s disease. I decided to watch this video to gain a better understanding of life with Crohn’s disease. This video really helped me understand how I can accommodate and help my brother feel included and loved. ❤️

I needed strength today and I found this video , I’ve been living with chrons for over 19 yrs diagnosed when I was 17 yo I’m now 37 yo , hearing these stories. Makes me feel less alone , I’m 3 surgeries deep lived with a illeostomy for 2 yrs was so lucky to get a reversal, the depression aspect is pretty deep here living a coping with chrons thanks for the video

Interesting learning about different disabilities and illnesses. Thank god I don’t have Crohn’s Disease. I have Cerebral Palsy. It slows me down but it’ll never stop me. Some days are better than others. I have moments when I’m depressed and feel like I don’t matter because of my disability.

Thank you your sharing, its very inspiring. I hope you have a group that other people of the same disease from other countries can join.

Darling may God continue to be with you 🙏🌹💪💖 As a parent we NEVA want to see our children hurting. No matter what the age 💕

I also have Crohn's disease. I have the same symptoms, and thank you for sharing this with us. Stay Blessed!

Story of my life! Surgery at age 27, Remicade in my 30s and now Humira at 48...since Humira, I NEVER get sick

Thank you Nicole.

Nice video on your storytime about your disease about crones

20 years old here, also very big into law. Since November 8th 2021, I had a terrible sudden sickly feeling. I was always active and energetic, just like this young lady. I've had constant, terrible, stomach cramps since that day. I've cut out most gluten, lactose, fast food, fried foods, beef, have taken medicines, took bacteria tests, stomach ulcer tests, blood work, CAT scans, etc. and all came back great while my better diet only helps a little. In about a month I will have an endoscopy and colonoscopy done, and I have to say that I am anxious and really depressed from all this. I've lost 15 lbs so far, that I didn't need to lose, and that just adds onto my mental state within itself. I played sports all my life, was 6'3 175lbs before getting sick, and it was SO sudden. I'm scared that I might have either Crohn's or Celiac disease. And I should probably stay off of the internet because it only makes my mental health worse, but this video made me cry because 1: if I do have Crohn's, I must say it's one of the worst things ever. And 2: I hate that anybody has to go through this. I start college again in a few weeks, so pray for me haha. For anyone who has this disease though, I wish you the best and to have a good day

This is very helpful for me. I am on IV treatment and I have to take shots. I am always tired with low energy so thanks for sharing because I felt so alone with this.

I’m glad I stumbled onto this video. I was diagnosed in 2017 and had surgery in 2018. I’ve been in the worst flare up for nearly 3 months. This pain is worse than what I experienced prior to my diagnosis and surgery. I’m feeling very alone and depressed since most people see me and think I look fine or assume I’m exaggerating about my condition. I feel like my whole life is on pause. I’m on a steroid and Entyvio and neither seem to be helping. I want my old life back. I want to travel again. Go to a workout class again. Meet people for lunch and coffee. It’s getting hard to be positive when there seems to be no end in sight 😢

Your story is so similar to mine, bless you i hope you got it under control

This gives me so much of hope 🙏 ❤

I hope one day there's a care I was diagnosed with crohn's disease 3 years ago I lost my job my home and a lot of my friends thank you for sharing your story never give up God is good I spent 53 in the hospital I lost 73 pounds and did not eat for 23days no feeding tube or nothing I see 7 different doctor I wish we all could get together and sit by a bonfire and tell are stories I love each and every one of you and never stop fighting I am so glad for my family if anyone has questions or needs someone to talk to I am hear

I got diagnosed when I was 22 and it really has been a hard process to get through. But after watching this video it gave me hope that I’m not alone in this journey and I pray to anyone who has crohn’s will get better

God bless you smart lady

Thanks for making this video. I have crohn's/colitis i found out i had it in 2016. It's hard having this because you have to try all kind of different medications. Then i had surgeries for a abscess and a fitsula. And with my crohn's/colitis i also developed asthma and vasicilius. The medications i have tried before was Humira, Remicade, Entyvo, and xeljanz, now my doctor have me on Stelara.

I’m 28 and just diagnosed ! It’s hit me like a bombshell

I'm grateful for the body I was given. A healthy body and mind.

I am pretty much the exact same. Just had my ilium removed this past month. I'm trying my best now to change my life. I'm not so lucky though and had invasive surgery taking 6 hours and multiple issues found. I'm looking now for biologic treatment. I pray for everyone who battles this evil disease

I was 14 when diagnosed. I was lucky, since my family doctor, after I lost almost 60 pounds in 5 months, suspected immediately and sent me to a gastroenterologyst that diagnosed me in less than a week. Since then I've been basically in symbiosys with my town's hospital, because in my unlucyness I'm born and live in a town with one of the best hospital of my country, therefore I go there at least one or two times every month for exams and check-ups. By now I've tried every medicine possible. I've never had surgery, because my CD affects different parts of the dygestive tract and therefore to remove the sick parts would be useless. But I've talked through socials with other people with CD, and I know to be lucky also because I'm at university, while other people had to drop out of high school since they couldn't keep up, cause the disease. In less than a year I'll become a doctor. Not a gastroentherologist, because it's not intersting enough to me, but my experience with a chronic disease will always help me dealing with patients.

IKR it’s so bad:( I was diagnosed at 14 but the doctors were like no way u got this disease recently . Turns out I had it (most probably) since I was a baby. (According to what they inferred) I mean it explains all of the struggles I went through since I was months old... everything became clear to me😅 and I still suffer to this day...

Its so nice that you have supportive parents. Mine were so neglectful that my disabilities went undiagnosed. As an adult I am learning how to live with my multipke disabilities and take care of myself.

Love this

I was diagnosed 2 years ago. Growing up I had difficulty gaining weight and went through dozens of tests. All they told me was that I need to drink more water. I was a senior in high school when I got H pylori which triggered my Crohns. Once I was diagnosed a lot of things made more sense.

I was 36 when I found out I had it and now I am in my 50 I couldn’t wish on my worst enemy but,God being good to me through it all

Hi Nicole! I’ve been having left-sided ulcerative colitis since I was 19. The good news is that remission is possible, whether you have Crohn’s or colitis, and you might be able to include some of your favorite foods back into your diet again. It’s good to know what will upset your stomach and try to avoid those things as much as possible, but the occasional indulgence should be fine. If Crohn’s and colitis could be fixed with diet alone, we would have eliminated these diseases along time ago. You’re probably 31 right now but I’m 28 like you were when you made the video. I will who dealt with a few friends during college, and I recently had a flareup when I started my job in the human resource field. I don’t think they’ve ever been as bad as the flareups that you’ve had but I understand. Take care!

Interesting insight

We need more awareness about this.

Diagnosed when I was 20 and went through the same surgery that Nicole experienced at 26. I had several emergency hospital stays for bowel obstructions the year prior to surgery. Went through Remicade infusions, Humira injections, and Stelara infusion and subsequent injections. Currently on Stelara injections once a month to help manage symptoms. Can improve upon diet but it's hard because I recently went through a c diff infection that turned my life upside down. I'm slowly getting better but diet has always been a struggle not knowing what I can and can't eat.

Sh Lewis today ( 1/30/2022) I saw your comment. I believe you are 17 now. Hope you have got better since there are lots of information re Crohn disease by now. For me, cutting flour and dairy from my diet was a great help.

Many thanks! Brilliant video! I’ve overhauled my diet (basically keto…no carbs or sugar) a couple of months ago…huge improvement!

“I am not this disease, this is not me.” I tell myself this at least once a day if I can remember. I’ve had Crohn’s since I was 12-13 and I’m almost 23 now. My life kind of stopped when it happened, I continued and am now here at this point. What they don’t stress enough is having knowledge of the disease and the things it does to your brain. When your gut (second brain) is compromised or anywhere in your body is, it sends signals to your brain that are mixed and wrong. So if your body is trying to destroy itself, imagine what’s happening inside the mind. Your quality of life is now a constant battle or struggle as it can be like that for many things. I wish I was better educated as a child on having a set schedule and room to mess around while still coming back to my safety net of a schedule. I used to have more drive to pursue anything at all, now I don’t know who I am and have no motivation or drive due to confusion from the disease, trauma, hunger, pain. I take one step forward and am automatically moved 5 steps back. I can’t think straight and can’t remember why I’m here a lot of days. It’s blinding and medicines are making me nervous about the effects they have on my body, mind, and life. My life is only about distractions and even when I’m surrounded by people, I am alone and can’t focus enough to pursue anything. I know what I need and what I need to do, I just don’t know where to start and how to push past the confusion.

A lovely woman you are, God bless her.. I too felt the same oddball out with being 32 yrs old diagnosed with colon cancer in 2017. Feels like you're alone, but God gets us through it for sure ❤️🙏

The struggle is real. Diagnosed 2015. Small bowel resection. Tons of meds, infusions, enteropathic arthritis now also. I have Crohn's Colitis. I struggle but keep going the best I can.

Hello!! My names Carla and i was diagnosed with Crohn’s colitis when i was only 17 . Ill Have been living with a permanent ileostomy for 30 years. I nearly bled to death as i was passing bloody stools about 20 times a day. Underwent several major surgeries. I had to have several pints of blood. I was 3 months away from my high school graduate but i did graduate with my class. You have my full support and I enjoyed your story. I was on Remicade in 2002 and it gave me two years remission. I felt wonderful!! Please reach out to me as i’d like to get to know you better!!! Take care and GOD BLESS

the pains are the worst thing in the world because for me laying down made it hurt so i would have to move around but that would make it hurt too and if you tried to go to the bathroom it would hurt and i was diagnosed at 16 and im 17 now

I just got diagnosed a few days ago, and currently still in the hospital for it. I was terrified when I first came even though I had an idea that I had Crohn’s even before I came to the hospital. I know that hardest part is going to be changing my diet. This video helps a lot!

I feel this so much.. I’m only 25 and was diagnosed at 21 as well. I feel like my disease controls me and I can’t control it. I’m missing out on being young still because I’m constantly in the bathroom..

My friend was just diagnosed with this disease. I'm trying to educate myself by watching videos like this. If anyone has tips on how to support them it would be greatly appreciated.

Thank you for sharing your story!! I'm 26, living with Crohn's, and Remicade just stopped working for me. I feel very scared, alone, and sad/frustrated that I can't take better care of my health. You give me hope and inspire me to challenge my normal and reclaim my life!!!

I am happy to see your life become very good given the disease. I just found out today that I quite likely have chron's disease. I have been dealing with this pain on and off since I can remember and am terrified of whats to come. I hope that one day sooner than later I can get to where you are. Thank you for sharing your story

So glad there is more awareness. It really is an invisible sickness and it is indeed crappy, pun intended unfortunately. Stress & anxiety can mess with it as well. Your GI tract is connected to EVERYTHING in your body. It's one of the core systems I. Your body and it is EXHAUSTING dealing with it constantly.

I just got diagnosed with severe Crohn’s disease after suffering for a year and going through tons of test and then dealt with a blockage on my own that the ER missed twice when went there In agony !!!! It was the worst 3 days of my life . I just started a aggressive treatment with humira and methotrexate and that in itself is ruff I got sick at first had to try and work myself through it and give it a chance . So now I’m handling it pretty good and I’m chilling in pain yet waiting to see if it starts to work here soon . They ( Docs ) say it takes a couple months for it to start to work so I’m praying it does . Be nice to find a blog or a website where I can communicate with people who went through this and can give pointers out as far as diet and things to expect . God bless y’all

as your far-close neighbor With IBS, I can relate a bit, also suffering from stomach aches and not being able to eat about 50% of food while also being a picky eater, I can only tell you that you are strong individuals, I can only guess that Crohn’s disease is having IBS on steroids, may god stand with you!

Thank you for this video, i am currently fighting Crohns and ulcerative colitis :(

Hi Nichole. Wish you well and thank you for sharing. Have you started any support group that one can join?🌹

Loved watching this! I am a Crohn’s disease patient and have currently not taken medication in 3-4 months. I would love to speak to someone. If somones sees this. Reply to me

I had laproscopic surgery and ended up perforating the next day. No one believed me that I said I was dying, and I wound up in emergency surgery 2 days later. Woke up with an ostomy, 8 months later got it removed and fixed my stomach that was left open. 2 more surgeries after, I'm 26 and in remission and doing amazing! I also have Short bowel syndrome, methadone helps with it, I was going to the bathroom 30 times a day before that. I have never felt better since I was diagnosed at 8

Very inspirational lady, I have crohns disease and am waiting to go back on to a different biologic I was on remicade it worked but then gave me medical induced lupus so had to stop. I'm currently in a flare and just waiting to been seen. My work us to be so understanding but now I have all new management they really don't give a crap I've brought Information on my diease in and a doctors letter but still they weren't interested I even get stopping from using the bathroom there is no care at all, unless someone has it knowone understands so that you for your video keep strong x

i was first diagnosed with crohns when i was 7 now im 16. i just took a recent colonscopy surgery in january and they found out there was ulcers from my stomach till the end of my intestines. the pain that i get is so intense and it hurts so bad but its been one heck of a journey, im still taking my medications to ease of the pain but its going ok 😊

I am so blessed I've had Crohn's disease for over 10 years I haven't taken any medicine in the past seven years because I don't have the money for insurance I have survived four pregnancies with no medicine I have my flare-ups like everyone else but thank God I'm still alive never once have I been in the hospital besides having my babies listening to you guys's stories and treatments makes me really appreciate God thank you

Update: I possibly need surgery to fix 2 fistulas, but can't get them or the test I need until I get health insurance. I also suffer from Crohn's. I was first diagnosed in 2013 and didn't get the right treatment till 2015. Now, I'm on mesalamine and Remicade infusion's which do help me. I'm fighting to get health insurance right now. I don't wish anyone to get Crohn's. It's an awful disease. God bless all fighters of this disease.

I have chrons disease and just had a flair up a few weeks ago. Its sucks and is very painful!

I’m pretty positive I have Crohn’s disease I currently have been diagnosed with celiac and EOE I am getting an colonoscopy next month I’m looking forward to it so I can get on meds to help I’m so tired of living with this it’s painful and lonely at times I’m glad to find this video it is encouraging

I’m facing this diagnosis and I’m a little scared but trying to fine advice and support xx

🙏😢

I think I have this and I. I have been to the ER several times. For the same symptoms. Nausea, vomiting, stomach pain, tremors, burning sensation in chest and stomach, diarrhea, no appite, depression, extreme fatigue etc. Today after going to the ER it was noted that my white blood cells are low extremely low. My doctor mentioned that it could be several things including Crohn's disease but he can't diagnose it because he is not a GI doctor but that's what the speculation is.

I was diagnosed with Chrons disease at the age of 5 I’m 9 and I feel like my life was going to be full of pain but this video made my day and now I feel like I belong

You are the really true warrior of corhns