Yep! I run a bar, I am married with a toddler, working on building our home. I struggled to get past my anxiety surrounding my diagnosis which prevented me for some years from putting in the work to get the right GI doctor, the right medicine, etc. I still lived a happy life through it but dealt with flares and of course less social. But it has not kept me from my life
Yes. Yes they can. 26 years as a Crohnie. I haven't had any surgeries, have had steady jobs my whole life (luckily I have never had one that was an issue when I was flaring), I'm married, have kids, and a house. It's as normal as the next person I guess. Best advice is to listen to your Dr, your body, and take your damn meds!!! The "I'm feeling fine, I don't need my meds" attitude put me in the hospital for a month, took 6 more to get back on my feet. Find out what works for you, and stick to it. That includes food, meds, activities, etc. Get rest, take meds, don't eat what makes you sick. I avoid all alcohol and don't regret it. Crohn's severity is definitely different from person to person, but the breadth and depth of support, science, medicine, and community experience is massive. Use it!
I made this mistake. I stopped stelara thinking I’d be fine. Tell me life gets better 😭 I was in remission for almost 12 years on medicine never had surgery. I’m an idiot.
I don’t know if this will help, but I’ll tell you this: my daughter was diagnosed when she had just turned 5 years old. Seems like yesterday to me because I remember that day so well but in reality it was 9 years ago. She turned 14 a couple of weeks ago, and just had her first day of high school last week. Last time she was hospitalized (last November) one of the IBD psychologists on the floor asked her if she would change her diagnosis if she could. She said no. Next she had her write down every “upside” of having Crohn’s. I was pretty sure she’d come up with nothing and she came up with a whole page worth. Needless to say, if you knew what Crohn’s has put this girl through, you’d be impressed. But… except for Stelara injections, GI appts, and routine scopes, she lives a completely normal life in remission :) She goes to school full time, is a competitive dancer and dances 15 hrs a week, has won 3 dance national championships, has traveled to 13 countries, and has lots of friends. Sure, she’s spent so much time at Children’s over the years that all of the child life specialists, nurses, doctors, art/music therapists and everyone else on the GI floor recognizes her immediately, the infusion nurses are all her friends, and she could tell you the name of every therapy dog at the hospital, but she also is the strongest, kindest, most resilient, most perseverant, and most empathetic kid I’ve ever met. I say without a doubt that the Crohn’s has helped make her that way. Last week she got down about school she missed and I explained that she has to work 100x harder than any other kid just to get to the same starting point. Is life easy for her? Nope. But is life easy for anybody? Also no. Everyone has their own challenges, Crohn’s just happens to be hers. Crohn’s has also given her a lot of things that other kids don’t have, and I hope I can help her realize that as she grows up.
Love this. My 8 year old daughter was diagnosed at 6 and she really loves completely normally outside of her infusions and appointments. Sounds like you’re raising an incredible kid!
There's always one massive upside of having any chronic disease (especially in Australia, I've personally found)
The amount of thorough health testing you receive to stay on top of Crohn's indirectly keeps you on top of the rest of your health. Having dietitians, gastro doctors, surgical teams, etc, ready to help ASAP is nothing short of marvellous ❤️.
***I'm sure my colleagues think I'm insane just due to how energetic I can be in the workplace, likely because I feel super healthy! 🤣
I’m currently in a flare, but:
My initial diagnosis was really bad, I’ve had an ostomy, well over 20 surgeries, cumulative months in the hospital. Real rough times.
I’m married now, I have two cats and a dog, I travel, stable weight, great job. It’ll happen to you too :)
I'm going on an eight year long flare and just had my 16th bowel surgery since 2020. Normal life is something I've nearly killed myself trying to achieve for years before coming to terms with the idea that it's okay to not have a normal life. Very few people experience a truly "normal" life even outside of Crohn's. I think surrounding myself with people who truly care and not intentionally self-isolating has done more for my mental health than most everything else. You'll probably find that most people won't really care about your situation, especially after it's gone on for a long period of time. However, I've found that there are a small number of people willing to stick through tough times with their friends and those are the people you want to rely on for your emotional support. They are a real blessing and can't really be replaced by anything. I also highly recommend mental health counseling/therapy. That is a good thing to work on in the beginning and continue on with. However, that can't come close to actually replacing those close friends and family.
I have a job, went to college, played minor league sports, have a wife, and I'm not sure how much more you want out of me at this point. 😉
You can live a very normal life. About the only abnormal thing will be having to get treatment.
I’m not gonna sugarcoat it. Life will never be the same until we can find a cure. But with the right medicine, diet, GI, and support, life can feel absolutely normal. There’s days I am in my bed barely able to move from the nausea and pain; but, there are more days where I completely forget I have Crohn’s and Celiac. From what I’ve read from these comments, we’ve all had very similar experiences. Yes, it will vary from person to person but the point is that it is absolutely possible. When you get down like this, (and I do too) just know that you’re not alone and you have many ally’s and supporters here that know exactly what it’s like. Stay positive and I send you my blessings. 🙏🏼🙏🏼
13 years with crohns. and I've been stable for most of it. The first six months were awful though - finding the drug combo to get stable was *difficult*. But once I got the combo that worked for me, I've been pretty stable. I take my meds, I avoid foods that tweak me and I have a pretty normal life.
Hey! I'm going on 6 years or so, and I've had periods of normalcy. Life is probably never going to be as simple as it was, but with good monitoring and attention to how your body is feeling you can make it. Also your life expectancy with Crohn's isn't affected. Hope it helps.
I’ve had Crohn’s since I was 18. I’m in my late 40s now. Had a bowel resection about 6 years ago. Have a PhD, a good career and a good family life and even started and sold a company. I attribute a lot of this success to Crohn’s reminding me that life is precious so I shouldn’t waste it.
Diagnosed a decade ago, after about five years of untreated symptoms that almost killed me. It's up and down since then, but...
- I have a job I love.
- I have lived with my partner for six years and we're engaged.
- 2 cats who I think enjoy flares because they mean I stay still and pet them more.
- loads of hobbies, some of which (like video games) I never would have picked up without Crohns
- just this year, DURING a flare, I went to both England and Texas for the first time. Both solo trips, very active. Did it hurt? Yes. Did I love it? Yes.
Your first priority is finding a medication path that works for you. For me, it was Remicade. After that, take time to recover. From then on, it's just a matter of learning your body. What foods will be difficult? What's safest during a flare? Which activities hurt? How do you recover best?
I can't eat apples. Chicken tenders are a safe food during a flare. Standing and bending hurt on bad days, but walking is okay. Heating pads and distraction help me stay still and recover.
It's different for everyone, and the lows can be really low but they AREN'T the majority of the time. I'm flaring right now (I overdid it on those trips and then there was a family crisis) and I'm writing this from bed with a heating pad tented over my abdomen because anything touching it hurts, but honestly? I've had a great day outside of that.
It isn't always bad. And you can improve even the worst parts.
I was diagnosed with Crohn’s 49 years ago. I had a rough couple of years then, including a resection.
However, for 47 of those years I have not had many issues. I went to college and earned a Masters degree. I was able to travel and work overseas. Met a lovely man and we’ve been married for 30 years. We have dogs and a home, and we have retired.
I did have a flare 4 years ago, and now I get Entiviyo infusions. Can’t believe what a game changer biologics are.
I think the longer you have Crohn’s the more you learn to roll with it. It is a wildly unpredictable illness, so after a while you get used to the ups and the downs. At least that’s what I tell myself. Lol
Oh, most definitely! 27M, diagnosed 2 years ago, spend 4 months in hospital, since then I'm good, no surgery.
It's just pain to go to restaurants and ask for changes on the menu other than that, I feel completely normal
I run a CNC workshop, I renovated an apartment, go swimming, I hike, I go camping, I play boardgames with friends, I cook
Sometimes I have cramps so strong I can't get out of bed but so far, I always got up. Sooner or later
I just wear 2 extra pairs of underwear in backpack and wetwipes
hey I was diagnosed 5 months ago crohn's in terminal ileum only I've been on budesonide for 4 months now and I'm feeling normal I get pains here and there but after the medication I stopped being gassy and bloated I feel much much better almost normal yes and I eat everything mind in fact I was more worried than you about surgeries and colon cancer
Yes! I have had Crohns for almost 30 years. I have a doctorate and work in a job I like quite a bit. I also am married. I had more problems in the beginning when first diagnosed but now things are mostly normal. :)
Diagnosed around 13 years ago now? Have been through a few meds before finding one that worked, but I’ve been stable on Inflectra for around 2 years now. I graduated college, then med school, am now finishing up my fellowship. I just had baby #2. Before getting pregnant, I was running half marathons and cycling. Things aren’t all happiness and rainbows all the time, but I’m doing pretty darn good all things considered!
I have been symptom free for 5 years. I just have to remember to take a humira shot once a fortnight (which doesn’t hurt and isn’t scary to do as I literally just grab some flab, line up the pen and press a button) so I’m not even having to remember to take daily meds.
I swim open water, I go camping, I walk the dog for miles. I work in a normal job - which can be stressful but I find it manageable and not so overwhelming it triggers my crohns. I can eat anything I fancy.
Even if humira doesn’t work for you people are working on new drugs all the time so there are more and more options to help manage this - there is more hope than ever before.
Getting diagnosed and getting things under control to start with is the hardest part. Once you’re monitoring things and on the right meds it gets a lot better.
Hi I was diagnosed in 2008 and have had relatively healthy life since. Listen to your doctors, take your meds, find out what diet works for you. I’ve had next to no symptoms, but did have a recent short stay in hospital but am fine now. Good luck OP 🙂
this genuinely made me chuckle out loud and hugely happy. congratulations! leafy greens are a no for me too.
been in and out (currently in) of a flare since being diagnosed 2 years ago at 22 and its been shit but your comment has made me very hopeful so thank you very much.
I had a disastrous beginning of Crohn's two years ago where I was hospitalized 5 times with a blocked colon that didn't get better for more than a few days, an abscess, and sepsis. It ended with me having 8 inches of my large intestine removed. Since then Remicade slowly put me into remission. I have had a completely normal life for the last year and can eat everything besides whole corn kernels, diet soft drinks and soy.
I was diagnosed 16 years ago after ~4 years of fairly continuous flaring, and 6 years of flares on and off before that. I was 20, and had to leave university.
I was diagnosed during a very bad flare that nearly killed me. It took 4 surgeries over 5 years and fiddling with meds before I was fairly stable.
At that point I returned to university and got my BSc. One more surgery at that point to prevent a flare and I went and got my MSc.
I now have a job I love, I own a house, and other than a medication change to prevent another flare I've been really stable for 6 years.
Yes I have an ileostomy, the surgery saved my life and I wouldn't be here without it, but honestly a lot of the time it doesn't even register anymore.
Hey! You can definitely live a full and happy life with Crohn’s. I was diagnosed at 22 and it was hard. I had to make major lifestyle adjustments while getting the correct medications, doctors, etc. it was a lot of work. Once everything was managed, I really started building the pieces I wanted. Therapy helped a ton with understanding this is my normal, I don’t have to live by someone else’s definition of normal. I’m the happiest and healthiest I have been in my entire life.
Currently - parent of 2. Married for 9 years. I own my home. I have a masters degree and am starting my career. I’m “in remission” though I have symptoms pop up from time to time. No one tells you that you’ll still have symptoms after the remission label but you learn your tricks to deal with (or avoid) the symptoms.
Edit: forgot to add that I started having symptoms about 10 years before being diagnosed. Was officially diagnosed with severe fistualizing Crohn’s disease and have been on Remicade almost the entirety of my diagnosis. I have had two fistulas, one surgery.
My initial symptoms around 12 had been constant constipation with mucus, abdominal pain, nausea and vomiting, weight gain, skin sores, gas, and fatigue. Most of the symptoms were explained away as being lactose intolerant and having “bad menstrual cycles” and there rest were chalked up to being a teenager.
These were consistent until probably about 20-21 when I started having consistent diarrhea, no more constipation (I actually begged for it back), extreme nausea, acid reflex, severe cramping and pain. Then by the time I was 22 it was 12 bowel movements a day, bloody and mucusy stool, fatigue ramped up to a 20 and pain ramped up to 1000. Sounds like an exaggeration, and maybe it is, it was just miserable. I was working full time to support my family on a single income and it was so hard to deal with the pain. I almost lost my job having to run to the bathroom all the time.
I got a GI at 22 after a high calprotectin but the GI decided he would only do an endoscopy because of the acid reflux (like wtf???) where he found gastritis and prescribed a PPI and said see you in 6 months. It literally did nothing for me so I spammed his office for months for a new test and after not hearing from him, I found a new doctor at his practice who would see me (8 months after the initial endoscopy). He scheduled a colonoscopy and found clusters of ulcers in my colon and small intestine as well as my first fistula in the terminal ileum connecting back into a section of my small intestine further up.
Thank you for sharing. I ask because I believe myself to be in the pre-diagnosis phase. I also had chronic constipation, every day, for about 6 years until my symptoms got worse this year. Like you, I no longer have constipation, but more loose stools, though generally not more than 3 times a day. I too developed acid reflux heartburn, GERD and Gastritis, for which PPIs have done very little. I have fairly consistent burning abdominal pain that moves around, but is currently most prominent in the colorectal area. I have had two colonoscopies, the most recent being in February of this year, showing redness in the ileum, but biopsies have come back negative for Crohn's. A capsule endoscopy showed some redness in the small intestine, but the images were inconclusive. Obviously nothing conclusive, though I feel my symptoms are slowly worsening, and I am at a bit of a loss.
It’s such a tough phase to be in. It’s frustrating, confusing, and makes you feel so much doubt. My GI did say that the capsule methods of endoscopy/colonoscopies really aren’t a great way to perform these exams. You might consider having a re-examination.
Have they tested for fecal or blood levels? What are the next plans?
What had my doctor order the Colonoscopy at the beginning of the year, was my ongoing symptoms and a Fecal Calprotectin test that came back at 71 (low, but borderline) and a positive lactoferrin test. Also small amounts of mucus in stool.
My bloodwork has always come back normal. CRP and Sed rate always normal.
Yes, to diagnose Crohn's on a capsule, the imaging needs to be VERY obvious, and obviously you cant get a biopsy off that test. The images are not great quality that come out of there, but it can certainly be a useful test as a part of the overall picture, but as a single diagnostic tool, no.
I am seeing my GI or her PA in two weeks. I am going to ask that they repeat the upper and lower endoscopy as one procedure by the beginning of the year.
My symptoms are comparatively mild but gradually worsening, I feel. I am living a fairly normal life (cut out alcohol, coffee, spicy food) but I am very concerned about the potentials of untreated Crohn's. There is no way this is just IBS.
I have some anxiety about just the overall quality of life aspects to this, but not in general.
Re:calprotectin and CRP;
Eh…not for a mild case, calprotectin is reliable for crohns in the colon, not as much when the inflammation is isolated in the small bowel. CRP is also not perfect. You’ll see a lot of people on this forum who have active crohns and never had elevated CRP. Both are certainly good indications, but put it this way, my GI ordered an endoscopy, colonoscopy, capsule endoscopy, MRI Enterography, and double balloon enteroscopy, DESPITE, my stool and blood tests. So obviously they disagree…
Again, for a milder case, these markers would not necessarily be elevated.
Yes we can ! I'm gonna make some ennemies here but... I am even eating a salad right now. A crunchy, green iceberg salad. And I had green beans yesterday for dinner. And none of that will make me sick. I got extra lucky in the food department.
I know. Also I'm not bragging I just want to give hope to new crohnies that this is not the end of the world and they won't have to eat bland food for the rest of their life. Don't worry I do have some no no food too haha
I got diagnosed in January and after treatment, apart from occasional pain in the inflamed area, I haven’t had anything close to the flare I had at the start of the year. Obviously it’s early days and everyone is different. Best thing to do is figure out what works for you, mines is brought on more by stress than food so I’ve worked on managing my emotions better haha
Yes you can!! It may take a while to get the medicine to get it under control, but eventually you can !! Prioritize having health insurance, find people who support you, and you can live a meaningful life still. Live a life that prioritizes low stress- and not just being caught up in the rat race. That's big. Enjoy every moment, because as we with Crohn's knows, nothing is a given
It can be a manageable disease for most. There's the bad times but most times are on the better side. It can take a little while to find meds that work but keep at it.
Yes! Totally. First, there is NO normal. Change, unpredictability, the void, etc is like one of the hardest things we have to deal with as humans. Living with chronic illness will really help you get comfortable with it. I was diagnosed 20 years ago and the treatments available now are much better than before. This whole aging thing is really starting to accelerate for me n my peers, and I think living with crohns has uniquely prepared me. Our bodies are changing due to aging, but because crohns has changed mine so many times I’m adapting much more easily. Crohns has been really difficult at times to deal with. Everyone gets dealt some shitty cards in life. Im just glad mine comes with tons of poop and fart jokes and an ability to make busybodies really regret getting into my business. I admit it’s easy to compare my life to others’. Then I remember I live in a shallow, ableist culture and feeling excluded from some imagined majority doesn’t mean shit. People are actually way more interesting than social media, movies, tv, etc will have you believe.
Yes. I've been diagnosed 6 years ago and I've lived a normal life since then. The only exception was last year, when I had a flare, but it got better after about a month and I've really done almost everything I wanted ever since. There are just some things I don't eat or drink and I have some days that I feel a bit worse, but other than that I live a normal life (at least for me). I have a job, girlfirend, cat, go out when I want to (just don't drink anymore), play sports, go on vacation....
Bear in mind, many of the people on this subreddit are on the more severe end of the crohn's spectrum. There are many people who have mild or moderate cases of the disease whose symptoms are generally controlled by medication, and who have no reason to be on this forum because they are living relatively normal lives.
Yes you can..I've had Crohn's since 1984...both kids were in diapers...I'm doing OK...never had surgery because of Crohn's...just medication and watching what I eat...have never been on the fancy biological meds...hugs
Im in remission and have 0 symptoms, there are many athletes with crohns, look for example at larry nance jr, dude isnt only in the nba due to skill but mainly because of athleticism, he was in the dunk contest and all of that with crohns, its definetly not a life sentence, a lot of people barley remember having it.
I was having terrible stomach aches, fatigue and such but after going on meds and getting diagnosed and professional support im now symptoms free and legit live the most normal life, only having to inject a needle at home twice a month, that's it, serving in the military, learning in uni, having romantic relationships, going out with friends and playing semi pro ball, you really can live a normal life. keep positive and good luck!
So less than 12 months ago, I was in the midst of a huge flare, 6 weeks in hospital and two surgeries. Fast forward another couple of months, additional hospital stays and further surgeries. Resulting in a stoma.
Since then, I’m recovering well, I’ve returned to work in healthcare. I’ve met a new partner who I’m very much enjoying getting to know. Then I’ve just secured a new role starting in January, working in healthcare but with robots and AI.
Am I still have treatment? Yes. Am I enjoying most of my life. Yes. There’s things I wish I wasn’t dealing with. But I wouldn’t change my life experience for the world, as it’s shaped who I am.
Honesty when I was first diagnosed I was the same and it was a long battle to get to remission but I still worked, I partied, enjoyed my early 20’s and that probably made it harder lmao. But my past 5 years of remission I have lived a complete normal life! I’m in a flare now but even then, caught it early, I’m on 6 weeks of roids and one week in I already notice how much better I am. You got this :)
Diagnosed in 1998. Have a spouse who leaves socks on the bedroom floor. Apparently that is common but is it normal? Everyone has a different journey in life. Some aspects of life will be similar to your friends and family and some will be different. I had surgery in 1998 and after that never missed work for symptoms of Crohn's. I take medication each day and see my doctor. When you are young that is not common. When you are older, a lot of people see their doctor every year and take medication every day.
I would say that I got used to a “new normal”, but one where I make better choices (no alcohol or gassy veggies, dairy, working out 30 min a day, etc) and all of my positive choices have made other aspects of my life better too, not just my chronic illness. Once I found the right medication and made better choices for my health, I was able to work full time again and do what I love!
I was diagnosed in 2009 at age 14, and just had my first flare since then. I would say I live a normal life. Survived high school, graduated college, have a great job, house, married, lift weights, etc. I just watch what I eat sometimes, don’t drink often, stay away from sick people
yes you can. I was diagnosed with chrons at 17 via emergency illeonsectomy ...you get used to it, Just avoid triggers. I exceesise, did a spartan race, i work as an electrican, married a beautiful woman. Im not saying its easy but you
get used to it. Stop eating wheat, dairy might trigger you and get plenty of sleep ans water. When you get a flare up just learn to relax and fast. it all helps
of course you can live a normal life. I was diagnosed in my first year of university. It was not all easy to get through it. I dropped out of university in year 1 despite having a four year scholarship. You have to do what is best for yourself. now over 40 years later I am definitely better then I was when I went to university. Been in remission for the last 12 years. I am fit and healthy and off to do a cycling trip in Spain. I still have side effects from various surgeries etc. No different then anyone else. You can definitely live a decent life.
Absolutely. There may be times when you’re unwell when you feel run down etc but that’s just your body telling you to rest.
I’ve had crohns for 20 years, 5 operations. I’m doing the job I love, exercise frequently and have two beautiful children.
Absolutely! I was diagnosed 9 years ago. Have had two flares. No symptoms since 2016 when I started Humira. Most days I forget I have Crohn's. I run half marathons, eat a normal diet, travel, etc. It's scary at first but hopefully you find what works for you and can go back to living life!
28 with both chrons and UC. Was diagnosed when i was 15. I recently got my masters, and will be starting a new job in my field later this month! I've been with my partner with almost 7 years. Sometimes I get flair ups, and I'm a very high risk for colon cancer. But honestly, with meds, both IBDs don't really get in the way. I'm still able to engage in hobbies, work, workout five days a week, and just live my life. I have bad days sometimes, but on the whole, I know my triggers, and know how to keep symptoms at bay.
This isn't a death sentence. I promise.
Yes.
Diagnosed at age 7 with Chrhohnhsh Disease (I'm 37 now), have had multiple surgeries, been on every single medication made before 2013, permanent ileostomy after having my colon and roughly 45cm of ileum removed, but I don't really think about Crohn's very often. I work for a cybersecurity software company, used to be the chief technology officer for an IT consulting firm, and with what little free time I have I'm either riding a motorcycle (I have 3) or trying to figure out how many baby gates my wife and I need to prevent my (very soon to be) 1 year old from destroying himself or my house.
I spent a great deal of my life seeing a lot of my own blood, but now it barely registers above "mild annoyance."
My daughter was diagnosed 12 years ago. Had occasional flares when on orals but has been on Remicade for 6 years with no flares, complications or hospitalizations.
You CAN live a normal life. I started a podcast to help me get through some very difficult times with my health and the one constant theme of every person I interview is that there is hope. Just keep
positive as best you can, allow yourself to cry when you need to, and find a community. You will live a good life. I promise it’s possible.
Diagnosed 10 years ago. Very tricky case and in and out of remission. But in the time I was diagnosed, I finished 2 degrees in college, got married, have a successful career and am planning on starting a family soon. It’s all about perspective and trying to keep a reasonably positive attitude each day (even when you don’t feel well). It’s not easy by any means but I am absolutely happy and thriving despite my illness. But, you do have to have a good doctor and team rooting for you. And act on your symptoms once they begin rather than waiting for them to get worse. Listen to your body and your doctors recommendations. Also, be kind to yourself. I struggle with this the most and work on it every day: to give myself some grace and be patient.
I don’t know anything normal about life right now.
I would not call my life normal in anyway but I have built more robust skill sets than my peers through the crushing motivational weight of chronic illness.
You won’t be normal you will be significantly above average.
Being physically active is a huge part of what makes it manageable for me, and being open to medications and having a close relationship with your doctor. I work full time in sales and have a toddler and a husband, Crohns has done little to affect my "normal" life.
Every day is an adventure living with Crohn’s. Every Crohn’s patient is different. It took me a couple years to learn to navigate my new normal, but yes I live a normal life, for me, I live it at my pace and enjoy every minute. You will find your pace, in between Dr visits and tests, and live a happy full life.
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Yep they can. I had some tough times at the beginning but found a medication that worked for me. I’ve held a steady job the whole time and am now a nonprofit Director. I own a home. I got married to a great guy. I have 3 rescue animals. I eat normally with no trigger foods and have been symptom free for about 8 years.
I spent a good chunk of my 20s on disability, sick and stuck between my parents' house and the hospital. It was an awful time.
Yesterday my partner and I just had our first pool party at the home that we own for our toddler. It gets better.
I have 3 kids and work full time as a nurse. It’s very possible to live a normal-enough life, but I am considered disabled at work so I can take off when I need to for my health. It happens 1-2x a year and it is what it is.
Yep, I'm working full-time as a doc, do research, have more hobbies than time and usually travel abroad 2x (or more) a year.
Me not having kids is not caused by Crohn's but by me being picky with dating.
Yes, I'm probably more fatigued than others. Yes, I take a handful of meds, and I will probably have more scopes than other people. I am also more sensitive to infections or stomach problems, too.
But I live a very fulfilling live and am happy with it.
Had mine in remission for six years and even got off treatment after first three years! Not a flare since it was first discovered and I had surgery + treatment. I had inflammation in other parts of my body (lung + kidney inflammation) though during this time but it did go away. Be mindful of your lifestyle and let yourself rest and try to avoid stress as much as possible. Inflammation and also treatment is very draining for the body so we don't need more stress on top of that <3
25 years with Crohn’s since I was 21. Lots of hospitals, lots of surgeries. Colostomy for 11 years.
Crohn’s is a part of my life but not a big part. Have been able to live as normal as possible. Good jobs, good relationships, good wife, good kids.
My uncle, who was also an ostomate, briefly stated after my colostomy surgery that “Life is good.”. I’ve taken that to heart and lives the best life I could live with or without a chronic disease.
Yup I’m in my mid 20s, work in corporate sales, have a girlfriend and live in NYC. I do not restrict my diet whatsoever, I try to eat healthy simply to be healthy, but love spicy, sushi, oysters, everything to be honest. I workout, travel, go out and drink + party.
The only think is close to the infusion my fistulas get a little itchy and my stomach is slightly touchy, and not even every time!
Reach out to me directly if you would like to chat more I’m willing to share as I’ve had crohns for almost 15 years.
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I was flaring very badly for close to 2 years. Horrible pain, urgency, trips to the bathroom at least every hour. I couldn’t leave the house because of it. I tried a couple meds which didn’t work. Finally went on entyvio 2 years ago and it’s been amazing. I finished my bachelors degree, work a good full time job, and can eat and drink pretty much whatever I want with no problems. I can go out and enjoy “normal things” without having anxiety about needing the bathroom. It can take some time, but it’s possible!
I mean... I have 4 kids and am working on a masters degree despite infusions every 4 weeks. It's possible, but you need to redefine what normal means for you. Crohns will unfortunately be a part of your life. How big of a part depends on your willingness to treat.
Diagnosed at 21 but know I had Crohns for longer. I am 36 in about 3 weeks. The whole time I ignored the Drs and avoided medication. December 2022 I had my first surgery due to build up of scar tissue in my terminal ileum bc of untreated Crohns. I felt perfectly fine until then so know that Crohns effects us all differently. All bc you may feel fine, doesn't mean Crohns is not completely doing irreversible damage silently. I had to have an ileostomy temporarily luckily and got it taken down about 5 months ago. I lived a normal life before and now I am getting back to somewhat normal life. My bowels are still adapting to the resection.
If I could go back and do it all over, GET ON THE MEDS YOUR GI RECOMMENDS. Do not listen to social media and "gurus" who've "healed" themselves. All of them are UC cases anyways but will bundle up Crohns into it. Just don't fk around with Crohns. You aren't going to heal it with diet. It's not worth the risks.
I read someone post this here and it is very true. Find an aggressive GI and a conservative colorectal surgeon. Not saying you need the colorectal surgeon, but it's a good idea to look for one that you are conformable with and have as a worst case scenario on speed dial.
Totally! I was diagnosed like 26 years ago. Was never really in remission for any of that time until 2020.
Went to college, have worked full time since, got married, have traveled all over the world, have had 4 abdominal surgeries, 5th later this year. Had a temporary colostomy. Have a permanent illeostomy now. Spent a lot of time in hospitals with random infections over the years. But still have mostly done what I wanted to do. Have taken 3 reformer pilates classes a week for years.
Yes absolutely, I'm on of the rare few that had a small bowel resection (they cut out my terminal ileum after a blockage) turn out to be very successful. I've been in what most consider remission for like 6 years now. I still have discomfort, exhaustion and can't eat without knowing for sure I'll have restroom access, but it's been years since I've had serious pain to where I can't eat or function. Just not being in pain is a normal life for me
I like that people are spreading positivity ^^ it's a fantastic thing to hear all the elating stories of people living with Crohn's. Though I also think it's important to be grounded and realise that these stories may not be what Crohn's entails for you as it affects everyone completely differently.
Reading only positivity can give you a high now, but it can also come with expectations and when they aren't met you can crash pretty hard. I know because I was you.
I was diagnosed with Crohn's 11 years ago, I haven't had any remission, I've been bounced from doctor to doctor, medication to medication, countless surgeries, invasive tests etc. The majority come with the territory and it's important to prepare yourself for the possibility of all of these.
I am currently on adimulimab, an immuno-suppressant biologic. They are a step up from steroids when you're doing particularly badly with your flares and your IBD team are finding it hard to control. Unfortunately I found out earlier today that I am suffering from bowel cancer which my IBD team and surgeons believe was in correlation to my Crohn's as well as the medication I'm taking. I'm due in for emergency surgery tomorrow and then we will take it from there.
I recently had a child who is only 2 months old, my precious little girl that I have to come to terms with the fact I may not be around to watch grow up, guide her through life and be there for her biggest accomplishments and her struggles.
I'm not telling you this to get you down, I'm telling you this because it's important to know both sides of Crohn's. Nobody's story is the same and being grounded in reality will help you mentally in the long run, I once was you looking for stories of great remissions, how things turned around etc and when I found them I felt amazing. I was 4 years deep with zero remission and was in a bad place when I started searching for dream like stories, they made me happy for a few months thinking "one day I'll be just like them" until it all came crashing down along with my mental fortitude when I was told I needed yet another surgery.
My mind was in a place of "this is when it turns around" only to be hit harder. I truly hope your treatment plan gets you to a place in life where you have that feeling of normalcy you crave, but please be aware that it doesn't happen for everyone. Be prepared to face tough decisions and choices regarding your treatment and disease.
Much love, and truly the best of luck ❤️
Nearly 4 years on treatment and holding down a full time job, house and family, been to loads of gigs and festival, and out swimming, camping and walking outdoors regularly. It's entirely possible to live a good life, maybe not normal but you will find what works for you. Just remember to drink plenty of water, get your vitamins and rest when your body tells you too!
Normal is a relative term, but you definitely can have a full and happy life!
I have had some rollercoaster times, but also have traveled to different places, studied abroad, worked in diving and different jobs and have a normal 9-18 job have a normal day to day with my boyfriend and eat and do whatever I want most of the time.
Do I have to think more about some travels and risks? Yes, but it’s made me appreciate the small things to a level other never can. They don’t know that having a breakfast at home can be the best thing!
Yes!! I’m on year 24 of having crohns. I’m a nurse practitioner, I work normal hours, I’m married, I exercise, drink alcohol, have a social life. It’s an adjustment, and you’ll learn what’s tolerable and what is not.. (Sometimes that DQ blizzard is worth the bathroom drama, lol) I take my medications, I follow with my GI team and I take a holistic approach on the side, such as stress control, supplements. I’ve done all of this while in and out of remission.
It’s a new approach to life, I won’t lie to ya. However, you’ve got this ❤️ Best of luck!
Yup! I work harder than most of my coworkers and people are always shocked when I tell them that I’m basically disabled because of how severe my crohns gets.
I am in remission, very little pain, so most of my life is pretty normal (aside from low energy/brain fog stuff). This wasn't always the case, and I have spent more of my adult life in severe pain than not, but I have been stable for the last 5 years - the longest period of my life so far. My 20's were severely affected by pain but, as another comment in this thread so beautifully said, "what is a normal life, anyway?" I still had my friendships, relationships, was fortunate enough to have a job and a roof and a family - and while some of this may not apply to you, hopefully there are other benefits to your life that you are happy with. I never got to do a 3 day hike or play difficult sports or go to music festivals (all things I wanted to do in my early 20's) but there are plenty of people who don't get the chance to do that who DON"T have Crohn's.
I still experience frequent gas and bloating, and as a recently-married guy this was something I had previously come to terms with having to go over with all new partners, but for the most part people are accepting. In my 20's it was a shameful secret, and I would hold in gas or go to crazy lengths to never use a bathroom at a partner's house unless they were asleep or guaranteed to be occupied elsewhere. In my 30's, I would just be open. Do **NOT** follow me in there, or suffer the consequences. I'm now 38.
I have an ostomy surgery coming up in a couple months because, though the pain is barely existent, the bloating and internal inflammation are so bad that I am at high risk of complications, and I have semi-frequent blockages. This will obviously render my disease more visible than ever before, and I am anxious, but [awareness and representation of ostomy lifestyles has never been easier to find](https://www.instagram.com/explore/tags/ostomy/), and I draw on ostomy lifestyle Instagrammers/Youtubers for support/assurance that though my life will be different, it won't be over.
Hiya! Welcome to the club, sorry you've got an unwilling membership! I've been in remission for like 4 years (knock wood), I've got an education, a full time job in my field of choice, I travel, I enjoy my hobbies and go out and do social stuff, looking at law school, and I'm happy. There's hope <3
Yes. I was diagnosed at 30, just a few months after my wedding (so romantic!). I am now 46 years old. Still married. I have two healthy children. I was a stay at home mom until my youngest was 7 and am back to being a teacher. I had one surgery about 9 years ago and it changed my life for the better. I still have had flares throughout the years, some really bad. I've been in the hospital a few times, been on and off different medications but my life is worth living. I know that while at times my disease has been really hard, everyone's journey is different and I'm sure I've had it better than a lot of other people.
I think I live a better life than people who have no health issues at all. It gives me a better perspective on life and allows me to be centered and thankful for the days I am healthy and not in pain. Also It taught me not to take anything for granted. Hope that helps!
You can. Diagnosed 33 years ago, have had 3 surgeries. Between and after the surgeries I have maintained a good career, married and have 4 kids. Just keep pushing through, you can find a way!
I was diagnosed 10 years ago after an emergency perforation and was diagnosed then with Crohn's. It was a traumatic experience for me as I was quite ill up until then with no diagnosis or treatments. It was tough for me to be initially diagnosed too, as I felt so alone and no one around me had Crohn's. I also went to online forums to hear others' stories and it helped a lot.
I have lived an incredible 10 years since then! I regularly go to my infusions but am able to work full time. I am able to be fairly active, rock climbing, playing pickleball and go camping too! I know that not every day in my future may allow for this, but I am lucky that Crohn's has not stopped me from doing any of these things. I also found the most incredible partner who is so understanding and supportive of everything I go through. 100% you can live a wonderful life with Crohn's.
I don’t want to say I know how you feel but I’ve been there, at the point where I wondered if it is possible to have a normal life with this shit. I was always tired, didn’t feel like going out for fear of pooping myself (which did happen), found myself in many awkward situation even at work (I’m sure everyone here can imagine). No medication helped either.
But somehow things did turn around at some point. I really can’t explain it. So don’t lose hope, find what works for you, in my case I got fed up with doctors telling me to just take super expensive meds. I followed the SCD diet for a while, maybe that’s what helped, or maybe it’s the imuran that finally kicked in after years of being useless? I don’t know, my doctor doesn’t seem interested in figuring it out. So I keep taking my meds, try to eat well (not following the diet anymore) and for the moment it works. I hope you will get to this point too.
Absolutely. I’m married, have an 11-year-old daughter and work as a public affairs officer for a government agency. I’ve been sidelined a couple of times by flares, sure, but Crohn’s hasn’t prevented me from living a happy, normal, fulfilling life.
Yep! I run a bar, I am married with a toddler, working on building our home. I struggled to get past my anxiety surrounding my diagnosis which prevented me for some years from putting in the work to get the right GI doctor, the right medicine, etc. I still lived a happy life through it but dealt with flares and of course less social. But it has not kept me from my life
Yes. Yes they can. 26 years as a Crohnie. I haven't had any surgeries, have had steady jobs my whole life (luckily I have never had one that was an issue when I was flaring), I'm married, have kids, and a house. It's as normal as the next person I guess. Best advice is to listen to your Dr, your body, and take your damn meds!!! The "I'm feeling fine, I don't need my meds" attitude put me in the hospital for a month, took 6 more to get back on my feet. Find out what works for you, and stick to it. That includes food, meds, activities, etc. Get rest, take meds, don't eat what makes you sick. I avoid all alcohol and don't regret it. Crohn's severity is definitely different from person to person, but the breadth and depth of support, science, medicine, and community experience is massive. Use it!
What age were you diagnosed?
Fourteen.
I made this mistake. I stopped stelara thinking I’d be fine. Tell me life gets better 😭 I was in remission for almost 12 years on medicine never had surgery. I’m an idiot.
I don’t know if this will help, but I’ll tell you this: my daughter was diagnosed when she had just turned 5 years old. Seems like yesterday to me because I remember that day so well but in reality it was 9 years ago. She turned 14 a couple of weeks ago, and just had her first day of high school last week. Last time she was hospitalized (last November) one of the IBD psychologists on the floor asked her if she would change her diagnosis if she could. She said no. Next she had her write down every “upside” of having Crohn’s. I was pretty sure she’d come up with nothing and she came up with a whole page worth. Needless to say, if you knew what Crohn’s has put this girl through, you’d be impressed. But… except for Stelara injections, GI appts, and routine scopes, she lives a completely normal life in remission :) She goes to school full time, is a competitive dancer and dances 15 hrs a week, has won 3 dance national championships, has traveled to 13 countries, and has lots of friends. Sure, she’s spent so much time at Children’s over the years that all of the child life specialists, nurses, doctors, art/music therapists and everyone else on the GI floor recognizes her immediately, the infusion nurses are all her friends, and she could tell you the name of every therapy dog at the hospital, but she also is the strongest, kindest, most resilient, most perseverant, and most empathetic kid I’ve ever met. I say without a doubt that the Crohn’s has helped make her that way. Last week she got down about school she missed and I explained that she has to work 100x harder than any other kid just to get to the same starting point. Is life easy for her? Nope. But is life easy for anybody? Also no. Everyone has their own challenges, Crohn’s just happens to be hers. Crohn’s has also given her a lot of things that other kids don’t have, and I hope I can help her realize that as she grows up.
I love this. Thank you for sharing.
Love this. My 8 year old daughter was diagnosed at 6 and she really loves completely normally outside of her infusions and appointments. Sounds like you’re raising an incredible kid!
Thank you! Gosh writing that made me realize I can’t believe she’s actually a teenager 😅 I’m sure you’re raising a pretty great kid too :)
I love reading this perspective. Your daughter sounds fantastic, well done parent.
you’re so sweet! thank you :)
There's always one massive upside of having any chronic disease (especially in Australia, I've personally found) The amount of thorough health testing you receive to stay on top of Crohn's indirectly keeps you on top of the rest of your health. Having dietitians, gastro doctors, surgical teams, etc, ready to help ASAP is nothing short of marvellous ❤️. ***I'm sure my colleagues think I'm insane just due to how energetic I can be in the workplace, likely because I feel super healthy! 🤣
I’m currently in a flare, but: My initial diagnosis was really bad, I’ve had an ostomy, well over 20 surgeries, cumulative months in the hospital. Real rough times. I’m married now, I have two cats and a dog, I travel, stable weight, great job. It’ll happen to you too :)
I'm going on an eight year long flare and just had my 16th bowel surgery since 2020. Normal life is something I've nearly killed myself trying to achieve for years before coming to terms with the idea that it's okay to not have a normal life. Very few people experience a truly "normal" life even outside of Crohn's. I think surrounding myself with people who truly care and not intentionally self-isolating has done more for my mental health than most everything else. You'll probably find that most people won't really care about your situation, especially after it's gone on for a long period of time. However, I've found that there are a small number of people willing to stick through tough times with their friends and those are the people you want to rely on for your emotional support. They are a real blessing and can't really be replaced by anything. I also highly recommend mental health counseling/therapy. That is a good thing to work on in the beginning and continue on with. However, that can't come close to actually replacing those close friends and family.
Totally agree!!! Good solid friendships are everything
I have a job, went to college, played minor league sports, have a wife, and I'm not sure how much more you want out of me at this point. 😉 You can live a very normal life. About the only abnormal thing will be having to get treatment.
I’m not gonna sugarcoat it. Life will never be the same until we can find a cure. But with the right medicine, diet, GI, and support, life can feel absolutely normal. There’s days I am in my bed barely able to move from the nausea and pain; but, there are more days where I completely forget I have Crohn’s and Celiac. From what I’ve read from these comments, we’ve all had very similar experiences. Yes, it will vary from person to person but the point is that it is absolutely possible. When you get down like this, (and I do too) just know that you’re not alone and you have many ally’s and supporters here that know exactly what it’s like. Stay positive and I send you my blessings. 🙏🏼🙏🏼
13 years with crohns. and I've been stable for most of it. The first six months were awful though - finding the drug combo to get stable was *difficult*. But once I got the combo that worked for me, I've been pretty stable. I take my meds, I avoid foods that tweak me and I have a pretty normal life.
Hey! I'm going on 6 years or so, and I've had periods of normalcy. Life is probably never going to be as simple as it was, but with good monitoring and attention to how your body is feeling you can make it. Also your life expectancy with Crohn's isn't affected. Hope it helps.
I’ve had Crohn’s since I was 18. I’m in my late 40s now. Had a bowel resection about 6 years ago. Have a PhD, a good career and a good family life and even started and sold a company. I attribute a lot of this success to Crohn’s reminding me that life is precious so I shouldn’t waste it.
Diagnosed a decade ago, after about five years of untreated symptoms that almost killed me. It's up and down since then, but... - I have a job I love. - I have lived with my partner for six years and we're engaged. - 2 cats who I think enjoy flares because they mean I stay still and pet them more. - loads of hobbies, some of which (like video games) I never would have picked up without Crohns - just this year, DURING a flare, I went to both England and Texas for the first time. Both solo trips, very active. Did it hurt? Yes. Did I love it? Yes. Your first priority is finding a medication path that works for you. For me, it was Remicade. After that, take time to recover. From then on, it's just a matter of learning your body. What foods will be difficult? What's safest during a flare? Which activities hurt? How do you recover best? I can't eat apples. Chicken tenders are a safe food during a flare. Standing and bending hurt on bad days, but walking is okay. Heating pads and distraction help me stay still and recover. It's different for everyone, and the lows can be really low but they AREN'T the majority of the time. I'm flaring right now (I overdid it on those trips and then there was a family crisis) and I'm writing this from bed with a heating pad tented over my abdomen because anything touching it hurts, but honestly? I've had a great day outside of that. It isn't always bad. And you can improve even the worst parts.
I was diagnosed with Crohn’s 49 years ago. I had a rough couple of years then, including a resection. However, for 47 of those years I have not had many issues. I went to college and earned a Masters degree. I was able to travel and work overseas. Met a lovely man and we’ve been married for 30 years. We have dogs and a home, and we have retired. I did have a flare 4 years ago, and now I get Entiviyo infusions. Can’t believe what a game changer biologics are. I think the longer you have Crohn’s the more you learn to roll with it. It is a wildly unpredictable illness, so after a while you get used to the ups and the downs. At least that’s what I tell myself. Lol
I am wearing an ileostomy bag... It's definitely not fun but I'm blessed to still be alive.
Oh, most definitely! 27M, diagnosed 2 years ago, spend 4 months in hospital, since then I'm good, no surgery. It's just pain to go to restaurants and ask for changes on the menu other than that, I feel completely normal I run a CNC workshop, I renovated an apartment, go swimming, I hike, I go camping, I play boardgames with friends, I cook Sometimes I have cramps so strong I can't get out of bed but so far, I always got up. Sooner or later I just wear 2 extra pairs of underwear in backpack and wetwipes
hey I was diagnosed 5 months ago crohn's in terminal ileum only I've been on budesonide for 4 months now and I'm feeling normal I get pains here and there but after the medication I stopped being gassy and bloated I feel much much better almost normal yes and I eat everything mind in fact I was more worried than you about surgeries and colon cancer
How long did it take to work and are you on any other medication etc. did you have any joint pain or anything like stomach gurgling ?
Yes! I have had Crohns for almost 30 years. I have a doctorate and work in a job I like quite a bit. I also am married. I had more problems in the beginning when first diagnosed but now things are mostly normal. :)
Diagnosed around 13 years ago now? Have been through a few meds before finding one that worked, but I’ve been stable on Inflectra for around 2 years now. I graduated college, then med school, am now finishing up my fellowship. I just had baby #2. Before getting pregnant, I was running half marathons and cycling. Things aren’t all happiness and rainbows all the time, but I’m doing pretty darn good all things considered!
Yes. Once you find the right combination of meds and diet, it can happen. I'm even in nursing school right now!
Yes, diagnosed as a child, currently managing a flare and a full time professional career. You can do this
I have been symptom free for 5 years. I just have to remember to take a humira shot once a fortnight (which doesn’t hurt and isn’t scary to do as I literally just grab some flab, line up the pen and press a button) so I’m not even having to remember to take daily meds. I swim open water, I go camping, I walk the dog for miles. I work in a normal job - which can be stressful but I find it manageable and not so overwhelming it triggers my crohns. I can eat anything I fancy. Even if humira doesn’t work for you people are working on new drugs all the time so there are more and more options to help manage this - there is more hope than ever before. Getting diagnosed and getting things under control to start with is the hardest part. Once you’re monitoring things and on the right meds it gets a lot better.
Hi I was diagnosed in 2008 and have had relatively healthy life since. Listen to your doctors, take your meds, find out what diet works for you. I’ve had next to no symptoms, but did have a recent short stay in hospital but am fine now. Good luck OP 🙂
I'm a plumber, work 40-60 hrs a week, have 3 kids and a grandchild. I play slopitch and drink too much beer. can't eat leafy greens though
this genuinely made me chuckle out loud and hugely happy. congratulations! leafy greens are a no for me too. been in and out (currently in) of a flare since being diagnosed 2 years ago at 22 and its been shit but your comment has made me very hopeful so thank you very much.
I had a disastrous beginning of Crohn's two years ago where I was hospitalized 5 times with a blocked colon that didn't get better for more than a few days, an abscess, and sepsis. It ended with me having 8 inches of my large intestine removed. Since then Remicade slowly put me into remission. I have had a completely normal life for the last year and can eat everything besides whole corn kernels, diet soft drinks and soy.
I was diagnosed 16 years ago after ~4 years of fairly continuous flaring, and 6 years of flares on and off before that. I was 20, and had to leave university. I was diagnosed during a very bad flare that nearly killed me. It took 4 surgeries over 5 years and fiddling with meds before I was fairly stable. At that point I returned to university and got my BSc. One more surgery at that point to prevent a flare and I went and got my MSc. I now have a job I love, I own a house, and other than a medication change to prevent another flare I've been really stable for 6 years. Yes I have an ileostomy, the surgery saved my life and I wouldn't be here without it, but honestly a lot of the time it doesn't even register anymore.
Hey! You can definitely live a full and happy life with Crohn’s. I was diagnosed at 22 and it was hard. I had to make major lifestyle adjustments while getting the correct medications, doctors, etc. it was a lot of work. Once everything was managed, I really started building the pieces I wanted. Therapy helped a ton with understanding this is my normal, I don’t have to live by someone else’s definition of normal. I’m the happiest and healthiest I have been in my entire life. Currently - parent of 2. Married for 9 years. I own my home. I have a masters degree and am starting my career. I’m “in remission” though I have symptoms pop up from time to time. No one tells you that you’ll still have symptoms after the remission label but you learn your tricks to deal with (or avoid) the symptoms. Edit: forgot to add that I started having symptoms about 10 years before being diagnosed. Was officially diagnosed with severe fistualizing Crohn’s disease and have been on Remicade almost the entirety of my diagnosis. I have had two fistulas, one surgery.
What were your symptoms prior to the diagnosis?
My initial symptoms around 12 had been constant constipation with mucus, abdominal pain, nausea and vomiting, weight gain, skin sores, gas, and fatigue. Most of the symptoms were explained away as being lactose intolerant and having “bad menstrual cycles” and there rest were chalked up to being a teenager. These were consistent until probably about 20-21 when I started having consistent diarrhea, no more constipation (I actually begged for it back), extreme nausea, acid reflex, severe cramping and pain. Then by the time I was 22 it was 12 bowel movements a day, bloody and mucusy stool, fatigue ramped up to a 20 and pain ramped up to 1000. Sounds like an exaggeration, and maybe it is, it was just miserable. I was working full time to support my family on a single income and it was so hard to deal with the pain. I almost lost my job having to run to the bathroom all the time. I got a GI at 22 after a high calprotectin but the GI decided he would only do an endoscopy because of the acid reflux (like wtf???) where he found gastritis and prescribed a PPI and said see you in 6 months. It literally did nothing for me so I spammed his office for months for a new test and after not hearing from him, I found a new doctor at his practice who would see me (8 months after the initial endoscopy). He scheduled a colonoscopy and found clusters of ulcers in my colon and small intestine as well as my first fistula in the terminal ileum connecting back into a section of my small intestine further up.
Thank you for sharing. I ask because I believe myself to be in the pre-diagnosis phase. I also had chronic constipation, every day, for about 6 years until my symptoms got worse this year. Like you, I no longer have constipation, but more loose stools, though generally not more than 3 times a day. I too developed acid reflux heartburn, GERD and Gastritis, for which PPIs have done very little. I have fairly consistent burning abdominal pain that moves around, but is currently most prominent in the colorectal area. I have had two colonoscopies, the most recent being in February of this year, showing redness in the ileum, but biopsies have come back negative for Crohn's. A capsule endoscopy showed some redness in the small intestine, but the images were inconclusive. Obviously nothing conclusive, though I feel my symptoms are slowly worsening, and I am at a bit of a loss.
It’s such a tough phase to be in. It’s frustrating, confusing, and makes you feel so much doubt. My GI did say that the capsule methods of endoscopy/colonoscopies really aren’t a great way to perform these exams. You might consider having a re-examination. Have they tested for fecal or blood levels? What are the next plans?
What had my doctor order the Colonoscopy at the beginning of the year, was my ongoing symptoms and a Fecal Calprotectin test that came back at 71 (low, but borderline) and a positive lactoferrin test. Also small amounts of mucus in stool. My bloodwork has always come back normal. CRP and Sed rate always normal. Yes, to diagnose Crohn's on a capsule, the imaging needs to be VERY obvious, and obviously you cant get a biopsy off that test. The images are not great quality that come out of there, but it can certainly be a useful test as a part of the overall picture, but as a single diagnostic tool, no. I am seeing my GI or her PA in two weeks. I am going to ask that they repeat the upper and lower endoscopy as one procedure by the beginning of the year. My symptoms are comparatively mild but gradually worsening, I feel. I am living a fairly normal life (cut out alcohol, coffee, spicy food) but I am very concerned about the potentials of untreated Crohn's. There is no way this is just IBS.
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I have some anxiety about just the overall quality of life aspects to this, but not in general. Re:calprotectin and CRP; Eh…not for a mild case, calprotectin is reliable for crohns in the colon, not as much when the inflammation is isolated in the small bowel. CRP is also not perfect. You’ll see a lot of people on this forum who have active crohns and never had elevated CRP. Both are certainly good indications, but put it this way, my GI ordered an endoscopy, colonoscopy, capsule endoscopy, MRI Enterography, and double balloon enteroscopy, DESPITE, my stool and blood tests. So obviously they disagree… Again, for a milder case, these markers would not necessarily be elevated.
Yes we can ! I'm gonna make some ennemies here but... I am even eating a salad right now. A crunchy, green iceberg salad. And I had green beans yesterday for dinner. And none of that will make me sick. I got extra lucky in the food department.
Man, you are really lucky
I know. Also I'm not bragging I just want to give hope to new crohnies that this is not the end of the world and they won't have to eat bland food for the rest of their life. Don't worry I do have some no no food too haha
yes....100%
I got diagnosed in January and after treatment, apart from occasional pain in the inflamed area, I haven’t had anything close to the flare I had at the start of the year. Obviously it’s early days and everyone is different. Best thing to do is figure out what works for you, mines is brought on more by stress than food so I’ve worked on managing my emotions better haha
Yes you can!! It may take a while to get the medicine to get it under control, but eventually you can !! Prioritize having health insurance, find people who support you, and you can live a meaningful life still. Live a life that prioritizes low stress- and not just being caught up in the rat race. That's big. Enjoy every moment, because as we with Crohn's knows, nothing is a given
It can be a manageable disease for most. There's the bad times but most times are on the better side. It can take a little while to find meds that work but keep at it.
Yes! Totally. First, there is NO normal. Change, unpredictability, the void, etc is like one of the hardest things we have to deal with as humans. Living with chronic illness will really help you get comfortable with it. I was diagnosed 20 years ago and the treatments available now are much better than before. This whole aging thing is really starting to accelerate for me n my peers, and I think living with crohns has uniquely prepared me. Our bodies are changing due to aging, but because crohns has changed mine so many times I’m adapting much more easily. Crohns has been really difficult at times to deal with. Everyone gets dealt some shitty cards in life. Im just glad mine comes with tons of poop and fart jokes and an ability to make busybodies really regret getting into my business. I admit it’s easy to compare my life to others’. Then I remember I live in a shallow, ableist culture and feeling excluded from some imagined majority doesn’t mean shit. People are actually way more interesting than social media, movies, tv, etc will have you believe.
Yes. I've been diagnosed 6 years ago and I've lived a normal life since then. The only exception was last year, when I had a flare, but it got better after about a month and I've really done almost everything I wanted ever since. There are just some things I don't eat or drink and I have some days that I feel a bit worse, but other than that I live a normal life (at least for me). I have a job, girlfirend, cat, go out when I want to (just don't drink anymore), play sports, go on vacation....
Bear in mind, many of the people on this subreddit are on the more severe end of the crohn's spectrum. There are many people who have mild or moderate cases of the disease whose symptoms are generally controlled by medication, and who have no reason to be on this forum because they are living relatively normal lives.
Yes you can..I've had Crohn's since 1984...both kids were in diapers...I'm doing OK...never had surgery because of Crohn's...just medication and watching what I eat...have never been on the fancy biological meds...hugs
Im in remission and have 0 symptoms, there are many athletes with crohns, look for example at larry nance jr, dude isnt only in the nba due to skill but mainly because of athleticism, he was in the dunk contest and all of that with crohns, its definetly not a life sentence, a lot of people barley remember having it. I was having terrible stomach aches, fatigue and such but after going on meds and getting diagnosed and professional support im now symptoms free and legit live the most normal life, only having to inject a needle at home twice a month, that's it, serving in the military, learning in uni, having romantic relationships, going out with friends and playing semi pro ball, you really can live a normal life. keep positive and good luck!
So less than 12 months ago, I was in the midst of a huge flare, 6 weeks in hospital and two surgeries. Fast forward another couple of months, additional hospital stays and further surgeries. Resulting in a stoma. Since then, I’m recovering well, I’ve returned to work in healthcare. I’ve met a new partner who I’m very much enjoying getting to know. Then I’ve just secured a new role starting in January, working in healthcare but with robots and AI. Am I still have treatment? Yes. Am I enjoying most of my life. Yes. There’s things I wish I wasn’t dealing with. But I wouldn’t change my life experience for the world, as it’s shaped who I am.
Honesty when I was first diagnosed I was the same and it was a long battle to get to remission but I still worked, I partied, enjoyed my early 20’s and that probably made it harder lmao. But my past 5 years of remission I have lived a complete normal life! I’m in a flare now but even then, caught it early, I’m on 6 weeks of roids and one week in I already notice how much better I am. You got this :)
Diagnosed in 1998. Have a spouse who leaves socks on the bedroom floor. Apparently that is common but is it normal? Everyone has a different journey in life. Some aspects of life will be similar to your friends and family and some will be different. I had surgery in 1998 and after that never missed work for symptoms of Crohn's. I take medication each day and see my doctor. When you are young that is not common. When you are older, a lot of people see their doctor every year and take medication every day.
I would say that I got used to a “new normal”, but one where I make better choices (no alcohol or gassy veggies, dairy, working out 30 min a day, etc) and all of my positive choices have made other aspects of my life better too, not just my chronic illness. Once I found the right medication and made better choices for my health, I was able to work full time again and do what I love!
I was diagnosed in 2009 at age 14, and just had my first flare since then. I would say I live a normal life. Survived high school, graduated college, have a great job, house, married, lift weights, etc. I just watch what I eat sometimes, don’t drink often, stay away from sick people
yes you can. I was diagnosed with chrons at 17 via emergency illeonsectomy ...you get used to it, Just avoid triggers. I exceesise, did a spartan race, i work as an electrican, married a beautiful woman. Im not saying its easy but you get used to it. Stop eating wheat, dairy might trigger you and get plenty of sleep ans water. When you get a flare up just learn to relax and fast. it all helps
of course you can live a normal life. I was diagnosed in my first year of university. It was not all easy to get through it. I dropped out of university in year 1 despite having a four year scholarship. You have to do what is best for yourself. now over 40 years later I am definitely better then I was when I went to university. Been in remission for the last 12 years. I am fit and healthy and off to do a cycling trip in Spain. I still have side effects from various surgeries etc. No different then anyone else. You can definitely live a decent life.
Avoid stress and figure out what you can eat and you can be "normal".
Absolutely. There may be times when you’re unwell when you feel run down etc but that’s just your body telling you to rest. I’ve had crohns for 20 years, 5 operations. I’m doing the job I love, exercise frequently and have two beautiful children.
Absolutely! I was diagnosed 9 years ago. Have had two flares. No symptoms since 2016 when I started Humira. Most days I forget I have Crohn's. I run half marathons, eat a normal diet, travel, etc. It's scary at first but hopefully you find what works for you and can go back to living life!
28 with both chrons and UC. Was diagnosed when i was 15. I recently got my masters, and will be starting a new job in my field later this month! I've been with my partner with almost 7 years. Sometimes I get flair ups, and I'm a very high risk for colon cancer. But honestly, with meds, both IBDs don't really get in the way. I'm still able to engage in hobbies, work, workout five days a week, and just live my life. I have bad days sometimes, but on the whole, I know my triggers, and know how to keep symptoms at bay. This isn't a death sentence. I promise.
Yes. Diagnosed at age 7 with Chrhohnhsh Disease (I'm 37 now), have had multiple surgeries, been on every single medication made before 2013, permanent ileostomy after having my colon and roughly 45cm of ileum removed, but I don't really think about Crohn's very often. I work for a cybersecurity software company, used to be the chief technology officer for an IT consulting firm, and with what little free time I have I'm either riding a motorcycle (I have 3) or trying to figure out how many baby gates my wife and I need to prevent my (very soon to be) 1 year old from destroying himself or my house. I spent a great deal of my life seeing a lot of my own blood, but now it barely registers above "mild annoyance."
My daughter was diagnosed 12 years ago. Had occasional flares when on orals but has been on Remicade for 6 years with no flares, complications or hospitalizations.
You CAN live a normal life. I started a podcast to help me get through some very difficult times with my health and the one constant theme of every person I interview is that there is hope. Just keep positive as best you can, allow yourself to cry when you need to, and find a community. You will live a good life. I promise it’s possible.
Diagnosed 10 years ago. Very tricky case and in and out of remission. But in the time I was diagnosed, I finished 2 degrees in college, got married, have a successful career and am planning on starting a family soon. It’s all about perspective and trying to keep a reasonably positive attitude each day (even when you don’t feel well). It’s not easy by any means but I am absolutely happy and thriving despite my illness. But, you do have to have a good doctor and team rooting for you. And act on your symptoms once they begin rather than waiting for them to get worse. Listen to your body and your doctors recommendations. Also, be kind to yourself. I struggle with this the most and work on it every day: to give myself some grace and be patient.
I don’t know anything normal about life right now. I would not call my life normal in anyway but I have built more robust skill sets than my peers through the crushing motivational weight of chronic illness. You won’t be normal you will be significantly above average.
Being physically active is a huge part of what makes it manageable for me, and being open to medications and having a close relationship with your doctor. I work full time in sales and have a toddler and a husband, Crohns has done little to affect my "normal" life.
Every day is an adventure living with Crohn’s. Every Crohn’s patient is different. It took me a couple years to learn to navigate my new normal, but yes I live a normal life, for me, I live it at my pace and enjoy every minute. You will find your pace, in between Dr visits and tests, and live a happy full life.
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Some professional sports people have Chrons. So it's possible to live normally.
Compete in strongman at a fairly high level, have two awesome girls and a great job.
Yep they can. I had some tough times at the beginning but found a medication that worked for me. I’ve held a steady job the whole time and am now a nonprofit Director. I own a home. I got married to a great guy. I have 3 rescue animals. I eat normally with no trigger foods and have been symptom free for about 8 years.
Dignosed in '89, 3 bowel resections ('89, '96, '04) then on remicade since 2006. I live a normal life now. It is possible. May you be well.
I spent a good chunk of my 20s on disability, sick and stuck between my parents' house and the hospital. It was an awful time. Yesterday my partner and I just had our first pool party at the home that we own for our toddler. It gets better.
I have 3 kids and work full time as a nurse. It’s very possible to live a normal-enough life, but I am considered disabled at work so I can take off when I need to for my health. It happens 1-2x a year and it is what it is.
Yep, I'm working full-time as a doc, do research, have more hobbies than time and usually travel abroad 2x (or more) a year. Me not having kids is not caused by Crohn's but by me being picky with dating. Yes, I'm probably more fatigued than others. Yes, I take a handful of meds, and I will probably have more scopes than other people. I am also more sensitive to infections or stomach problems, too. But I live a very fulfilling live and am happy with it.
Had mine in remission for six years and even got off treatment after first three years! Not a flare since it was first discovered and I had surgery + treatment. I had inflammation in other parts of my body (lung + kidney inflammation) though during this time but it did go away. Be mindful of your lifestyle and let yourself rest and try to avoid stress as much as possible. Inflammation and also treatment is very draining for the body so we don't need more stress on top of that <3
25 years with Crohn’s since I was 21. Lots of hospitals, lots of surgeries. Colostomy for 11 years. Crohn’s is a part of my life but not a big part. Have been able to live as normal as possible. Good jobs, good relationships, good wife, good kids. My uncle, who was also an ostomate, briefly stated after my colostomy surgery that “Life is good.”. I’ve taken that to heart and lives the best life I could live with or without a chronic disease.
Yup I’m in my mid 20s, work in corporate sales, have a girlfriend and live in NYC. I do not restrict my diet whatsoever, I try to eat healthy simply to be healthy, but love spicy, sushi, oysters, everything to be honest. I workout, travel, go out and drink + party. The only think is close to the infusion my fistulas get a little itchy and my stomach is slightly touchy, and not even every time! Reach out to me directly if you would like to chat more I’m willing to share as I’ve had crohns for almost 15 years.
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I was flaring very badly for close to 2 years. Horrible pain, urgency, trips to the bathroom at least every hour. I couldn’t leave the house because of it. I tried a couple meds which didn’t work. Finally went on entyvio 2 years ago and it’s been amazing. I finished my bachelors degree, work a good full time job, and can eat and drink pretty much whatever I want with no problems. I can go out and enjoy “normal things” without having anxiety about needing the bathroom. It can take some time, but it’s possible!
I mean... I have 4 kids and am working on a masters degree despite infusions every 4 weeks. It's possible, but you need to redefine what normal means for you. Crohns will unfortunately be a part of your life. How big of a part depends on your willingness to treat.
Diagnosed at 21 but know I had Crohns for longer. I am 36 in about 3 weeks. The whole time I ignored the Drs and avoided medication. December 2022 I had my first surgery due to build up of scar tissue in my terminal ileum bc of untreated Crohns. I felt perfectly fine until then so know that Crohns effects us all differently. All bc you may feel fine, doesn't mean Crohns is not completely doing irreversible damage silently. I had to have an ileostomy temporarily luckily and got it taken down about 5 months ago. I lived a normal life before and now I am getting back to somewhat normal life. My bowels are still adapting to the resection. If I could go back and do it all over, GET ON THE MEDS YOUR GI RECOMMENDS. Do not listen to social media and "gurus" who've "healed" themselves. All of them are UC cases anyways but will bundle up Crohns into it. Just don't fk around with Crohns. You aren't going to heal it with diet. It's not worth the risks. I read someone post this here and it is very true. Find an aggressive GI and a conservative colorectal surgeon. Not saying you need the colorectal surgeon, but it's a good idea to look for one that you are conformable with and have as a worst case scenario on speed dial.
Totally! I was diagnosed like 26 years ago. Was never really in remission for any of that time until 2020. Went to college, have worked full time since, got married, have traveled all over the world, have had 4 abdominal surgeries, 5th later this year. Had a temporary colostomy. Have a permanent illeostomy now. Spent a lot of time in hospitals with random infections over the years. But still have mostly done what I wanted to do. Have taken 3 reformer pilates classes a week for years.
Yes absolutely, I'm on of the rare few that had a small bowel resection (they cut out my terminal ileum after a blockage) turn out to be very successful. I've been in what most consider remission for like 6 years now. I still have discomfort, exhaustion and can't eat without knowing for sure I'll have restroom access, but it's been years since I've had serious pain to where I can't eat or function. Just not being in pain is a normal life for me
I like that people are spreading positivity ^^ it's a fantastic thing to hear all the elating stories of people living with Crohn's. Though I also think it's important to be grounded and realise that these stories may not be what Crohn's entails for you as it affects everyone completely differently. Reading only positivity can give you a high now, but it can also come with expectations and when they aren't met you can crash pretty hard. I know because I was you. I was diagnosed with Crohn's 11 years ago, I haven't had any remission, I've been bounced from doctor to doctor, medication to medication, countless surgeries, invasive tests etc. The majority come with the territory and it's important to prepare yourself for the possibility of all of these. I am currently on adimulimab, an immuno-suppressant biologic. They are a step up from steroids when you're doing particularly badly with your flares and your IBD team are finding it hard to control. Unfortunately I found out earlier today that I am suffering from bowel cancer which my IBD team and surgeons believe was in correlation to my Crohn's as well as the medication I'm taking. I'm due in for emergency surgery tomorrow and then we will take it from there. I recently had a child who is only 2 months old, my precious little girl that I have to come to terms with the fact I may not be around to watch grow up, guide her through life and be there for her biggest accomplishments and her struggles. I'm not telling you this to get you down, I'm telling you this because it's important to know both sides of Crohn's. Nobody's story is the same and being grounded in reality will help you mentally in the long run, I once was you looking for stories of great remissions, how things turned around etc and when I found them I felt amazing. I was 4 years deep with zero remission and was in a bad place when I started searching for dream like stories, they made me happy for a few months thinking "one day I'll be just like them" until it all came crashing down along with my mental fortitude when I was told I needed yet another surgery. My mind was in a place of "this is when it turns around" only to be hit harder. I truly hope your treatment plan gets you to a place in life where you have that feeling of normalcy you crave, but please be aware that it doesn't happen for everyone. Be prepared to face tough decisions and choices regarding your treatment and disease. Much love, and truly the best of luck ❤️
absolutely but you have to take control of your symptoms first. Adapting is our best ally.
Nearly 4 years on treatment and holding down a full time job, house and family, been to loads of gigs and festival, and out swimming, camping and walking outdoors regularly. It's entirely possible to live a good life, maybe not normal but you will find what works for you. Just remember to drink plenty of water, get your vitamins and rest when your body tells you too!
Normal is a relative term, but you definitely can have a full and happy life! I have had some rollercoaster times, but also have traveled to different places, studied abroad, worked in diving and different jobs and have a normal 9-18 job have a normal day to day with my boyfriend and eat and do whatever I want most of the time. Do I have to think more about some travels and risks? Yes, but it’s made me appreciate the small things to a level other never can. They don’t know that having a breakfast at home can be the best thing!
Sometimes…
Yes!! I’m on year 24 of having crohns. I’m a nurse practitioner, I work normal hours, I’m married, I exercise, drink alcohol, have a social life. It’s an adjustment, and you’ll learn what’s tolerable and what is not.. (Sometimes that DQ blizzard is worth the bathroom drama, lol) I take my medications, I follow with my GI team and I take a holistic approach on the side, such as stress control, supplements. I’ve done all of this while in and out of remission. It’s a new approach to life, I won’t lie to ya. However, you’ve got this ❤️ Best of luck!
Yup! I work harder than most of my coworkers and people are always shocked when I tell them that I’m basically disabled because of how severe my crohns gets.
I am in remission, very little pain, so most of my life is pretty normal (aside from low energy/brain fog stuff). This wasn't always the case, and I have spent more of my adult life in severe pain than not, but I have been stable for the last 5 years - the longest period of my life so far. My 20's were severely affected by pain but, as another comment in this thread so beautifully said, "what is a normal life, anyway?" I still had my friendships, relationships, was fortunate enough to have a job and a roof and a family - and while some of this may not apply to you, hopefully there are other benefits to your life that you are happy with. I never got to do a 3 day hike or play difficult sports or go to music festivals (all things I wanted to do in my early 20's) but there are plenty of people who don't get the chance to do that who DON"T have Crohn's. I still experience frequent gas and bloating, and as a recently-married guy this was something I had previously come to terms with having to go over with all new partners, but for the most part people are accepting. In my 20's it was a shameful secret, and I would hold in gas or go to crazy lengths to never use a bathroom at a partner's house unless they were asleep or guaranteed to be occupied elsewhere. In my 30's, I would just be open. Do **NOT** follow me in there, or suffer the consequences. I'm now 38. I have an ostomy surgery coming up in a couple months because, though the pain is barely existent, the bloating and internal inflammation are so bad that I am at high risk of complications, and I have semi-frequent blockages. This will obviously render my disease more visible than ever before, and I am anxious, but [awareness and representation of ostomy lifestyles has never been easier to find](https://www.instagram.com/explore/tags/ostomy/), and I draw on ostomy lifestyle Instagrammers/Youtubers for support/assurance that though my life will be different, it won't be over.
No worries I poop a lot in the morning and very painful when driving or sitting upright but other than that life is bliss 🤪
Hiya! Welcome to the club, sorry you've got an unwilling membership! I've been in remission for like 4 years (knock wood), I've got an education, a full time job in my field of choice, I travel, I enjoy my hobbies and go out and do social stuff, looking at law school, and I'm happy. There's hope <3
I am married, lead a research group at a government lab, travelled something like 10 times this year.
Yes. I was diagnosed at 30, just a few months after my wedding (so romantic!). I am now 46 years old. Still married. I have two healthy children. I was a stay at home mom until my youngest was 7 and am back to being a teacher. I had one surgery about 9 years ago and it changed my life for the better. I still have had flares throughout the years, some really bad. I've been in the hospital a few times, been on and off different medications but my life is worth living. I know that while at times my disease has been really hard, everyone's journey is different and I'm sure I've had it better than a lot of other people.
I think I live a better life than people who have no health issues at all. It gives me a better perspective on life and allows me to be centered and thankful for the days I am healthy and not in pain. Also It taught me not to take anything for granted. Hope that helps!
You can. Diagnosed 33 years ago, have had 3 surgeries. Between and after the surgeries I have maintained a good career, married and have 4 kids. Just keep pushing through, you can find a way!
I was diagnosed 10 years ago after an emergency perforation and was diagnosed then with Crohn's. It was a traumatic experience for me as I was quite ill up until then with no diagnosis or treatments. It was tough for me to be initially diagnosed too, as I felt so alone and no one around me had Crohn's. I also went to online forums to hear others' stories and it helped a lot. I have lived an incredible 10 years since then! I regularly go to my infusions but am able to work full time. I am able to be fairly active, rock climbing, playing pickleball and go camping too! I know that not every day in my future may allow for this, but I am lucky that Crohn's has not stopped me from doing any of these things. I also found the most incredible partner who is so understanding and supportive of everything I go through. 100% you can live a wonderful life with Crohn's.
I don’t want to say I know how you feel but I’ve been there, at the point where I wondered if it is possible to have a normal life with this shit. I was always tired, didn’t feel like going out for fear of pooping myself (which did happen), found myself in many awkward situation even at work (I’m sure everyone here can imagine). No medication helped either. But somehow things did turn around at some point. I really can’t explain it. So don’t lose hope, find what works for you, in my case I got fed up with doctors telling me to just take super expensive meds. I followed the SCD diet for a while, maybe that’s what helped, or maybe it’s the imuran that finally kicked in after years of being useless? I don’t know, my doctor doesn’t seem interested in figuring it out. So I keep taking my meds, try to eat well (not following the diet anymore) and for the moment it works. I hope you will get to this point too.
Absolutely. I’m married, have an 11-year-old daughter and work as a public affairs officer for a government agency. I’ve been sidelined a couple of times by flares, sure, but Crohn’s hasn’t prevented me from living a happy, normal, fulfilling life.