Diagnosed at 17 way back in 2000. Now 24 years later. I have yeeted the Colon. Turns out in my case, due to consistent inflammation I was in a really bad flare back in 2020 that got me go go back into my GI dr. Well in August of 2020 I graduated from GI Dr to Ocologist and Colorectal surgeons. Thankfully I'm 3 years cancer free from stage 4 colon cancer and my bag has been treating me pretty well so far.
Ah, it's not crhon, it's ulcerative colitis. For the first 10 years or so it was in the last centimeters and I took it via enemas (or clysters? I'm not sure of the proper word).
After that it went a bit too far for them and I changed to pills
Masalazine always worked for me and they took me off of it in favour of biologics which has produced irregular results. I've always questioned that decision and I fear it's big pharm pushing the biologics.
16, now I'm 37. I've been in remission for 12 years. I have one permanent active Fistula left over. Otherwise, it's just humera until my body rejects it and to the next med. The years between 16 and 24 were rough. Fistulas are the worst thing ever.
I did have 1 fistula removed from surgery. In fact, the same one more than once. But it was a sprout off of a main one in a place they could remove it. The one that's still active can't be removed without the possibility of becoming incontinent. So I deal with it. The others healed over time.
I was 12, currently 23 and in remission for 5 years due to Humira. I’ve also made a lot of lifestyle changes and have really learned how my body reacts to triggers, but I still have occasional flares. Hoping it’s smooth sailing for a while
Diagnosed at 19, symptoms since around 13-14.
Only had one surgery - subtotal colectomy and have an ileostomy, have had it 7 years and it will be permanent.
My symptoms have been few and far between since my surgery, no meds since then
Diagnosed at 15, now I'm 30. Several pages worth of procedures and surgeries.
I go through times of relative "normality" and then times of pain/problems.
It's a roller-coaster over here.
Diagnosed at 12. Had some bumpy years and had surgery at 18. I then enjoyed some 20 years of remission. Unfortunately in the last 6 months, I have gone into a flare and my colon feels like a rusty dumpster. Non-stop diarrhoea for the past 3-4 weeks. I'm on steroids and due another scope soon.
Diagnosed at 16, had it a year or so before. Am 44 now. Have had 4 bowel resections and more obstructions than I can count. Been in the hospital more than I can count. Disabled since 36. Rarely, if ever, haven't been on meds of some sort.
Diagnosed at 11, now 33, Crohns was only present in my terminal ileum. Treated with the specific carbohydrate diet until I was 16. Then tried 6MP: didn’t work. Had to do a course of prednisone which turned into being on it for 2 years. Then went back to specific carbohydrate diet/gluten free and low dose naltrexone until I was 21. At this point I had such an extreme stricture due to scar tissue build up so I had a resection of my terminal ileum. Crohns also spread to my entire colon at this point. Started Humira in 2013 and am still on it today in remission.
I’ve had a lot of other health complications stemming from my young diagnosis in recent years. In 2020 I was diagnosed with perianal Crohn’s and IBS. I have a perianal fistula now that has caused me quite the headache. I also was diagnosed with EoE, dermatitis, eczema, and hidrinitus supperativa in 2021. And then 4 weeks ago I contracted norovirus and so feel like I’ve been in a flare for a month 🤦🏼♀️
When I think back on how it’s been since I was diagnosed compared to now, it’s just exhausting. The differences in treatments and symptoms have changed but I feel rundown and so much physically older than my 33 year old body.
I was 9, now almost 30. Lots of ups and down and different medications and rounds of being on enteral feeds till I had surgery at 15. Was ok for a bit then symptoms returned, eventually started remicade in very early 20’s. Pretty much symptom free since then, and off all meds for nearly 2 years now. Everyone’s journey is so different, and I used to be anxious about running out of treatment options since I got it so young, but here we are. I have hopes that as time goes on treatments get even better. Best of luck :)
Lots of ups and downs since being diagnosed almost 20 years ago, but I've been on a steadily upwards trajectory over the past several years and currently feeling better than I can remember, hang in there!
I was diagnosed at 11 and had a feeding tube for 2 months with imuran which stopped working when I was 15 but super mild pain compared to what I was used to. I switched to humira and now to yuflyma (it’s the same thing just generic brand) and I’ve been in remission since with no issues, it hasn’t affected me in ages. I haven’t had to get any surgery and have only had 2 colonoscopies since 11 and I’m now 20.
Diagnosed at 8, had part of my intestines removed at 14. I’ve been in remission since getting surgery and getting on the medicine I’m on now. (I’m 16 now)
I was diagnosed at 17 in August of 1999, and I’m 41 now. At the time of diagnosis,I had many failed medications. I had so much scar tissue nothing helped, Prednisone, Asacol, 6MP, and for some reason my doctor put me on Flagyl when I had no fistulas. I ended up having surgery in December of 1999. I was good and didn’t even need medication until June 2002, my surgical site began eroding due to active disease and inflammation, and i I lost 5 units of blood, had to have a blood transfusion. They only put me on SlowFe for anemia after cauterizing the site internally. I was good again for another 10 years and had to be put on Cimzia for about a year. I stopped because I moved from Florida to Michigan and didn’t have health insurance for a bit, but was fine (this was about 2012). So I’ve been good from 2012 up until 2023, I had a flare last spring where I was extremely dehydrated, I passed out, and I went to the ER because I was in so much pain (I never go to the ER). My blood sugar was at a 48 🤷♀️🤷♀️. Since then I’ve been on Humira, and I’m totally fine. By that I mean I still have diarrhea and stomach issues occasionally, but nothing incredibly awful or lifestyle hindering.
diagnosed at 16, symptoms starting at 14. i’m now 21, due to long term complications and damage i’m heading for a permanent stoma this summer. i’ve done a lot of different medications but this is my first real surgery for the disease, so fingers crossed for remission soon!!
Diagnosed at 17. 22 now. I’ve luckily not had any major complications, had a lot of flare ups along the way but am stable and in remission now. I unfortunately have accumulated 5 additional incurable diseases which have given me a lot more problems, but overall I’m doing well and living my life as best I can.
Diagnosed when I was a teenager and am 41 now. More obstructions than I can count. I have failed multiple medications and have had 6 surgeries. Became disabled at age 37.
diagnosed at 17 or 18 but had symptoms since 14! 20 years old now and doing meh, have had allergic reactions to almost every drug! hanging in there though and seeing a surgeon right now to see if we wanna cut some bad bits out.
I’m 16 and was diagnosed at 14. Symptoms definitely little better now. But I’m still in my first long flare. I’m interested to see how I will be leading my life in the future and manage my crohns in my adult life. I’m looking forward to the challenge, hopefully no big troubles too often
Diagnosed at 15 in 2020, settled on vedolizumab in October 2022 and been pretty decent ever since. But those two years before vedo were horrendous, completely ruined my last year at school
I was diagnosed at 16, experiencing symptoms for around 2ish years prior to diagnosis.
I’m now 32, following a bowel resection around 7 years ago i’ve had little to no stomach cramps since. However my energy levels have been so low and more recently I have been struggling with aching joints from the hips down, brain fog, low iron/anaemia and bile malabsorption. While I am very very lucky and grateful that I am no longer having painful stomach pains, what I am dealing with currently does get to me sometimes.
I have always had signs of active Crohns shown up on blood tests, so I have recently started on Azathioprine and Adalimumab which i’m hoping goes well, so far so good!
Diagnosed at 18/19, surgically put into remission. Almost 20 years later and I’ve had one small flare since. My main symptoms are joint pain at this point but other than when I first got pregnant with my oldest, it hasn’t affected me
I was 11 when I got sick -it took a year to figure out what I had I was horribly sick i lost so much weight was in pain all the time severe Crohn’s symptoms but it took forever for them to figure it out - they thought I had cancer - we ended up going to a special children’s hospital and that’s where they figured it out finally
Teen years were rough, I was sick all the time and on a ton of prednisone which made me feel sick too . I started SCD and got into remission with meds was able to transition from prednisone to mesalamine with the SCD diet combined and by the time I was 18 was in remission and on mesalamine only and by 20/21 I was in full remission and weaned off of meds (under supervision), full remission for a decade then went off SCD and 6 months later ended up in the hospital got back in scd and back into remission
I’ve been in remission almost all of my adult life and mostly med free
This year after having Covid September I’ve had chronic diarrhea for months (with it randomly some days being normal) but they haven’t figured out if it’s actually Crohn’s because everything has tested normal and I don’t feel sick or in pain and my weight is stable so since September it’s in question but before that I’ve been in remission and all tests fine since 2012
I’ve been pretty lucky but I also am super strict SCD and also never drink alcohol caffeine or dairy and low fibre that’s what’s worked for me
I’ve had much more of a struggle with menstrual health (endometriosis fibroids polyps) the Crohn’s has not been such a problem for me
Diagnosed at 17 in 1993 but had been trying to find out what was wrong from 13 so fully obstructed before I got it. Now 31 years in Im out of med options if the entyvio and Skyrizi combo fails and I am on the very edge of short bowel syndrome with only 2 cm keeping me on this side of jt. And that's the fun parts lol
same failed almost all med options I have 230cm left of healthy small intestine,(30cm left til falls short) it re-attacked same area again with scar tissue again shortly after a rough surgery, they are testing me for skyrizi every 6 weeks (first dose may 2023)
It usually returns to the site after surgery it seems. I'm on entyvio, Skyrizi and entocort with very minimal improvement but holding onto hope cuz there's literally nothing I haven't done after this I hope Skyrizi can help you. This point of the journey sucks
I was diagnosed at 5 and had an iliostomy from 5-14. now im 18 and i dont feel great. im on stelara. i failed humera, entivio, skirizi, remicade, and a few others. i have a bit of colon left and i only had 1 bowel resection. i have chronic esophagus inflamation now but my remaning colon is ok as of last year and so is my intestines. but boy is the arthritis bad. i was diagnosed with sever crohns disease
I was diagnosed at 14 I’m now 21 and my symptoms are horrible now, when I was a kid they were pretty good actually but I didn’t take medication like I was supposed to so I guess the situation I’m in now is all my fault
Diagnosed at 15 in 2000. Had first emergency surgery in 2005 total colectomy. I had went into organ failure. 8 years of remission. Second emergency surgery in 2013. 10 years of remission. Basically been in a flare since December of 2023. Between insurance and how long it takes to get appointments and testing I’m feeling pretty bad still. I’ve had infections, abscess & fistula’s. Budesonide worked for about 4 weeks. Testing for c-diff again. Maybe going back to prednisone while we wait for rinvoq to be approved. I can’t take any nausea meds because I’m either allergic or sensitive to them. Dr won’t prescribe anything else so I’m just raw dogging it feeling miserable.
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Diagnosed at 17 way back in 2000. Now 24 years later. I have yeeted the Colon. Turns out in my case, due to consistent inflammation I was in a really bad flare back in 2020 that got me go go back into my GI dr. Well in August of 2020 I graduated from GI Dr to Ocologist and Colorectal surgeons. Thankfully I'm 3 years cancer free from stage 4 colon cancer and my bag has been treating me pretty well so far.
I really appreciate the phrase “yeeted the colon” 😂 Hoping for your continued remission!
fuck cancer!!! so happy you’re in remission
I was diagnosed at 17yo, now I'm 35. I took mesalazine each day since then and I only had symptoms once. Im blessed I guess
Was your crohn’s in your colon?
Ah, it's not crhon, it's ulcerative colitis. For the first 10 years or so it was in the last centimeters and I took it via enemas (or clysters? I'm not sure of the proper word). After that it went a bit too far for them and I changed to pills
May I know how much mesalamine you take daily? And was your UC mild or moderate when diagnosed?
2400mg per day, i don't remember exactly but I'm pretty sure it was the lowest severity. I lost a lot of blood, but without any pain at all
Masalazine always worked for me and they took me off of it in favour of biologics which has produced irregular results. I've always questioned that decision and I fear it's big pharm pushing the biologics.
16, now I'm 37. I've been in remission for 12 years. I have one permanent active Fistula left over. Otherwise, it's just humera until my body rejects it and to the next med. The years between 16 and 24 were rough. Fistulas are the worst thing ever.
Did you have to get surgery?
I did have 1 fistula removed from surgery. In fact, the same one more than once. But it was a sprout off of a main one in a place they could remove it. The one that's still active can't be removed without the possibility of becoming incontinent. So I deal with it. The others healed over time.
I was 12. Its been almost 35 years. My crohns symptoms are the least of my problems now.
May I know what medication you are taking? And what kind of crohns you have?
I was 12, currently 23 and in remission for 5 years due to Humira. I’ve also made a lot of lifestyle changes and have really learned how my body reacts to triggers, but I still have occasional flares. Hoping it’s smooth sailing for a while
Diagnosed at 19, symptoms since around 13-14. Only had one surgery - subtotal colectomy and have an ileostomy, have had it 7 years and it will be permanent. My symptoms have been few and far between since my surgery, no meds since then
Diagnosed at 15, now I'm 30. Several pages worth of procedures and surgeries. I go through times of relative "normality" and then times of pain/problems. It's a roller-coaster over here.
Diagnosed at 12. Had some bumpy years and had surgery at 18. I then enjoyed some 20 years of remission. Unfortunately in the last 6 months, I have gone into a flare and my colon feels like a rusty dumpster. Non-stop diarrhoea for the past 3-4 weeks. I'm on steroids and due another scope soon.
My kiddo was 6. She’s 9 now and on remission :) thanks to remicade!
Diagnosed at 16, had it a year or so before. Am 44 now. Have had 4 bowel resections and more obstructions than I can count. Been in the hospital more than I can count. Disabled since 36. Rarely, if ever, haven't been on meds of some sort.
Diagnosed at 11, now 33, Crohns was only present in my terminal ileum. Treated with the specific carbohydrate diet until I was 16. Then tried 6MP: didn’t work. Had to do a course of prednisone which turned into being on it for 2 years. Then went back to specific carbohydrate diet/gluten free and low dose naltrexone until I was 21. At this point I had such an extreme stricture due to scar tissue build up so I had a resection of my terminal ileum. Crohns also spread to my entire colon at this point. Started Humira in 2013 and am still on it today in remission. I’ve had a lot of other health complications stemming from my young diagnosis in recent years. In 2020 I was diagnosed with perianal Crohn’s and IBS. I have a perianal fistula now that has caused me quite the headache. I also was diagnosed with EoE, dermatitis, eczema, and hidrinitus supperativa in 2021. And then 4 weeks ago I contracted norovirus and so feel like I’ve been in a flare for a month 🤦🏼♀️ When I think back on how it’s been since I was diagnosed compared to now, it’s just exhausting. The differences in treatments and symptoms have changed but I feel rundown and so much physically older than my 33 year old body.
I was 9, now almost 30. Lots of ups and down and different medications and rounds of being on enteral feeds till I had surgery at 15. Was ok for a bit then symptoms returned, eventually started remicade in very early 20’s. Pretty much symptom free since then, and off all meds for nearly 2 years now. Everyone’s journey is so different, and I used to be anxious about running out of treatment options since I got it so young, but here we are. I have hopes that as time goes on treatments get even better. Best of luck :)
Lots of ups and downs since being diagnosed almost 20 years ago, but I've been on a steadily upwards trajectory over the past several years and currently feeling better than I can remember, hang in there!
I was diagnosed at 19, I'm now 32, it's been a wild ride!
I was diagnosed at 11 and had a feeding tube for 2 months with imuran which stopped working when I was 15 but super mild pain compared to what I was used to. I switched to humira and now to yuflyma (it’s the same thing just generic brand) and I’ve been in remission since with no issues, it hasn’t affected me in ages. I haven’t had to get any surgery and have only had 2 colonoscopies since 11 and I’m now 20.
Diagnosed at 8, had part of my intestines removed at 14. I’ve been in remission since getting surgery and getting on the medicine I’m on now. (I’m 16 now)
I was diagnosed at 17 in August of 1999, and I’m 41 now. At the time of diagnosis,I had many failed medications. I had so much scar tissue nothing helped, Prednisone, Asacol, 6MP, and for some reason my doctor put me on Flagyl when I had no fistulas. I ended up having surgery in December of 1999. I was good and didn’t even need medication until June 2002, my surgical site began eroding due to active disease and inflammation, and i I lost 5 units of blood, had to have a blood transfusion. They only put me on SlowFe for anemia after cauterizing the site internally. I was good again for another 10 years and had to be put on Cimzia for about a year. I stopped because I moved from Florida to Michigan and didn’t have health insurance for a bit, but was fine (this was about 2012). So I’ve been good from 2012 up until 2023, I had a flare last spring where I was extremely dehydrated, I passed out, and I went to the ER because I was in so much pain (I never go to the ER). My blood sugar was at a 48 🤷♀️🤷♀️. Since then I’ve been on Humira, and I’m totally fine. By that I mean I still have diarrhea and stomach issues occasionally, but nothing incredibly awful or lifestyle hindering.
Diagnosed at 14, symptoms have been manageable but deffinetly present. Overall doing pretty well but not like I was prediagnosis.
diagnosed at 16, symptoms starting at 14. i’m now 21, due to long term complications and damage i’m heading for a permanent stoma this summer. i’ve done a lot of different medications but this is my first real surgery for the disease, so fingers crossed for remission soon!!
Diagnosed at 17. 22 now. I’ve luckily not had any major complications, had a lot of flare ups along the way but am stable and in remission now. I unfortunately have accumulated 5 additional incurable diseases which have given me a lot more problems, but overall I’m doing well and living my life as best I can.
I seem to collect diseases too. I really want to knock it off, but they seem to come with breathing.
Diagnosed when I was a teenager and am 41 now. More obstructions than I can count. I have failed multiple medications and have had 6 surgeries. Became disabled at age 37.
diagnosed at 17 or 18 but had symptoms since 14! 20 years old now and doing meh, have had allergic reactions to almost every drug! hanging in there though and seeing a surgeon right now to see if we wanna cut some bad bits out.
I’m 16 and was diagnosed at 14. Symptoms definitely little better now. But I’m still in my first long flare. I’m interested to see how I will be leading my life in the future and manage my crohns in my adult life. I’m looking forward to the challenge, hopefully no big troubles too often
Diagnosed at 15 in 2020, settled on vedolizumab in October 2022 and been pretty decent ever since. But those two years before vedo were horrendous, completely ruined my last year at school
I was diagnosed at 16, experiencing symptoms for around 2ish years prior to diagnosis. I’m now 32, following a bowel resection around 7 years ago i’ve had little to no stomach cramps since. However my energy levels have been so low and more recently I have been struggling with aching joints from the hips down, brain fog, low iron/anaemia and bile malabsorption. While I am very very lucky and grateful that I am no longer having painful stomach pains, what I am dealing with currently does get to me sometimes. I have always had signs of active Crohns shown up on blood tests, so I have recently started on Azathioprine and Adalimumab which i’m hoping goes well, so far so good!
Diagnosed at 18/19, surgically put into remission. Almost 20 years later and I’ve had one small flare since. My main symptoms are joint pain at this point but other than when I first got pregnant with my oldest, it hasn’t affected me
I became symptomatic at 2.5 years old, diagnosed at 17 (thanks for not believing me, doc). Now I’m 23, and stable-ish on humira weekly (:
I was 11 when I got sick -it took a year to figure out what I had I was horribly sick i lost so much weight was in pain all the time severe Crohn’s symptoms but it took forever for them to figure it out - they thought I had cancer - we ended up going to a special children’s hospital and that’s where they figured it out finally Teen years were rough, I was sick all the time and on a ton of prednisone which made me feel sick too . I started SCD and got into remission with meds was able to transition from prednisone to mesalamine with the SCD diet combined and by the time I was 18 was in remission and on mesalamine only and by 20/21 I was in full remission and weaned off of meds (under supervision), full remission for a decade then went off SCD and 6 months later ended up in the hospital got back in scd and back into remission I’ve been in remission almost all of my adult life and mostly med free This year after having Covid September I’ve had chronic diarrhea for months (with it randomly some days being normal) but they haven’t figured out if it’s actually Crohn’s because everything has tested normal and I don’t feel sick or in pain and my weight is stable so since September it’s in question but before that I’ve been in remission and all tests fine since 2012 I’ve been pretty lucky but I also am super strict SCD and also never drink alcohol caffeine or dairy and low fibre that’s what’s worked for me I’ve had much more of a struggle with menstrual health (endometriosis fibroids polyps) the Crohn’s has not been such a problem for me
Diagnosed at 7, Crohns is the least of my worries. Now it is other autoimmune conditions and symptoms that has arose from Crohn’s disease
I’m 21 now***
i was 16 & i’m 21 now. compared to 16yr me or me now, im in much better shape, i get a flare once in while but way more manageable
Diagnosed at 17 in 1993 but had been trying to find out what was wrong from 13 so fully obstructed before I got it. Now 31 years in Im out of med options if the entyvio and Skyrizi combo fails and I am on the very edge of short bowel syndrome with only 2 cm keeping me on this side of jt. And that's the fun parts lol
same failed almost all med options I have 230cm left of healthy small intestine,(30cm left til falls short) it re-attacked same area again with scar tissue again shortly after a rough surgery, they are testing me for skyrizi every 6 weeks (first dose may 2023)
It usually returns to the site after surgery it seems. I'm on entyvio, Skyrizi and entocort with very minimal improvement but holding onto hope cuz there's literally nothing I haven't done after this I hope Skyrizi can help you. This point of the journey sucks
I was diagnosed at 5 and had an iliostomy from 5-14. now im 18 and i dont feel great. im on stelara. i failed humera, entivio, skirizi, remicade, and a few others. i have a bit of colon left and i only had 1 bowel resection. i have chronic esophagus inflamation now but my remaning colon is ok as of last year and so is my intestines. but boy is the arthritis bad. i was diagnosed with sever crohns disease
I was diagnosed at 14 I’m now 21 and my symptoms are horrible now, when I was a kid they were pretty good actually but I didn’t take medication like I was supposed to so I guess the situation I’m in now is all my fault
Diagnosed at 15 in 2000. Had first emergency surgery in 2005 total colectomy. I had went into organ failure. 8 years of remission. Second emergency surgery in 2013. 10 years of remission. Basically been in a flare since December of 2023. Between insurance and how long it takes to get appointments and testing I’m feeling pretty bad still. I’ve had infections, abscess & fistula’s. Budesonide worked for about 4 weeks. Testing for c-diff again. Maybe going back to prednisone while we wait for rinvoq to be approved. I can’t take any nausea meds because I’m either allergic or sensitive to them. Dr won’t prescribe anything else so I’m just raw dogging it feeling miserable.
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dx at 17. Humira worked well for a few years. 1 surgery, now on remicade. Deep remission for about 6 years
My daughter was diagnosed at 5 years old September of last year.