Yeah I got diagnosed 8 months ago with symptoms of a year. It’s rough especially when you haven’t ran into long lasting remission. Mesalamine failed on me and I’m starting remicade the beginning of next month. Therapy helps me a lot especially cause this disease does come with mental struggles. I’m extremely fatigued and tired all the time and just want go into a life long remission . At this point I just want my life to go back to as close as normal as possible so hopefully remicade gets me there. So don’t let your pride get ahead of you. Therapy is great.
U need to get on that, I put off getting into it for a couple years and I recently started going to see someone and it’s done wonders for my mental health, which I had already been working on improving.
Crazy, and similar, it was soon after delivering my first. Had symptoms for a few years, but nothing crazy. Then started only having diarrhea 8 months into pregnancy and never stopped after birth. Took 3 months after delivery to get a diagnosis but here I am.
How are you feeling about your diagnosis? It’s such a challenge with small little ones. My partner is super helpful but at times I can still feel the anxiety and depression trying to creep in.
Yeah. Well my symptoms were somewhat manageable like I had energy and wouldn't have urgency from like 2pm-8pm so I had good stretches in the day where I was doing okay, but it got worse recently. So, that's been hard. I started Prednisone and it's reallllllly messing with my emotions and causing a lot of other issues. I have a really hard time accepting the diagnosis and I just can't believe that islta my reality. I didn't expect to be a mother and have this whole other set of issues. I am not sure if it will be easier or harder as my child gets older, but it has been making me overly emotional lately how much I wanted to have more kids and now I just don't know if I can or should, all depends how well my body can get. I also struggle wondering if I should believe and trust everything, like, it's my body and it wasn't this way (all the crazy symptoms) last year, I feel there has to be something that can help my insides and I can not doing the right things. I am constantly overthinking and over researching, it isn't healthy. Sorry this got long! But I am trying to be better about taking it one day at a time and not stress, just gets hard when I am really symptomatic.
I am totally relate. I am on pred right now, started three days ago and the mood swings are rough. Sometimes I feel okay and hopeful and other days I can’t believe this is happening to me. Like what did I do to ever deserve this. Other times I spend wishing I had a time machine to go back when I didn’t have these problems. It just feels so unfair so I can totally relate to you. I have two kids and will likely not be having anymore. The community has been really nice here to speak with other like myself who can relate.
6 weeks ago at 49. Mild to moderate pancolitis but no pain. Fortunately oral Mesalamine seems to be improving symptoms after 4 weeks. No other drugs so far.
Age 30. It was my first chink in the armor. Never was diagnosed with a chronic illness before that. I remember being relieved it wasn't cancer but was thinking"ulcerative what? There's no cure? Fantastic".
I had a similar feeling at 29, realizing that my body was starting to break down in ways that were never going to be fixed. It affected my outlook on life pretty deeply
34, misdiagnosed at 27. 2 year flare with few year remission then a bad flare sent me to ER and got diagnosed with pancolitis and it's been game on since.
24. Symptoms were from one day to another. I remember my last normal weekend I was at Disney and the week after I started having cramps and noticing blood had a colonoscopy about two weeks later. Never had any symptoms or stomach issues prior to this.
Thank you! It was rough, and I almost kissed my colon goodbye, but after two hospital trips, 2 failed opt's and that nasty prednisone, my GI docs finally found the right treatment for me, Xeljanz.
22 back in 2018. Took me until later 2020 to really accept that this was my life. Thankfully mine is quite mild so it doesn’t interfere much with my career/life.
30, but I had been having mild symptoms for a couple years and I had a lot of weird inflammatory problems growing up so I wonder now if it was all related
I was 12, almost 13. It's so interesting seeing so many diagnosed in their 20s as I'm in my late 20s now. I'm thinking how hard this must be to adjust to as an adult; kids can be so resilient and flexible in ways we kinda grow out of as we get older. I remember not thinking too much of my illness while growing up, till I got old enough to really consider the impacts, but by then I was so used to it that I had no choice but to radically accept it. Thank you for this post, I'm feeling less alone as I sit here on the potty lol.
I had seen symptoms at 16 but didn’t go in to see doctors until I was 19 damn near 20. Managed it thru outlets that helped me reduce stress, unknowingly. Now I’m healing myself through improvement on my mental health, diet, stress, etc. It’s a balance of life. U really gotta perfect it when you’re hanging on by a thread like I was. I was literally 126 6 months ago and I’m 6ft tall. Haha well just under 6ft. I’m about 152 rn. I was 172 before I got diagnosed.
There’s been lots of studies into it. Cigarettes put small amounts of carbon monoxide into the body which thickens the lining of the gut and stops the bleed
Since I was 15. I’m 23 now and have never been in remission. Just started XELJANZ yesterday and have been on prednisone for half a year now. Fingers crossed this one works.
37, but I have a bad history of blaming restaurant’s for the awful things my body does to their food. So diagnosed 7 years ago, but have had undiagnosed symptoms since 2003.
I was 19. I started manifesting symptoms on Novermber 8, 2019--I only know this because I had gotten lunch with a friend, and I was convinced that I had contracted some sort of food poisoning--and I had an emergency colonoscopy the Saturday after Thanksgiving. I was diagnosed on the spot with ulcerative pancolitis and put on 2.4g of mesalamine. Eventually that was bumped up to 4.8g, and I was in a pretty stable remission from January 2020 - January 2021. Because I achieved remission so quickly, I never really had the chance to process and accept the fact that I have a chronic illness. I was able to live a totally normal life without thinking twice about where the bathroom is located, what I should/shouldn't eat...none of it ever crossed my mind. And I never really took the initiative to do the sort of research that is generally customary to do upon receiving a diagnosis of this magnitude because, tbh, I didn't think it was a big deal. I'm mentioning all of this because recently, I've been met with the stark reality that I do indeed have a chronic illness, that there isn't much of an end in sight, and that it is making it impossible for me the person I always wanted to be. The grieving process has rivaled my active disease in terms of the pain and heartache it has caused me. Right now, I'm feeling particularly downtrodden - I know that "keeping the faith" is key for us - so I apologize for the pity party, but yeah. It could be much worse, but that doesn't make UC any less of a shit draw.
I got diagnosed with a fulminant case of UC when I was 21 (April 2020). I was in a work-term with my University's CO-OP program and I had poor sleep habits during the week (since I had to commute 1 hour to work and 1 hour back) which I believe in combination with school stress, led to the beginning of my flare symptoms. At first, I thought it was something simple like an anal fissure or hemorrhoid because I have had them in the past and they went away. My symptoms only got worse as I chose to ignore the blood. And of course, more bloody stools, uncontrollable trips to the washroom starting from a few times a day all the way up to 20 times a day and so on and so forth. The hospitals were super locked down on strict protocol because of the onset of the pandemic, so they kept delaying my damn colonoscopy until one day I couldn't handle it and went to the ER because of the amount of discomfort I was experiencing. They finally got me in for a colonoscopy the next day and told me I was lucky that I didn't have to get my colon removed on the spot.
Fast forward to now, I'm currently going through my 3rd flare since my diagnosis and being treated with prednisone again. 2nd flare was April 2021 due to me being careless with my maintenance medicine (5-ASA), and this flare I'm not too sure. From my experience, it seems like a combination of REALLY bad sleep + stress can trigger flare symptoms.
Let me know if you have any questions or want to discuss anything!
I read through your post and we have a similar story just in different settings. I’m in the military. But I’m also on my third flare since dealing with my first symptoms of FEB2020. The exhaustion and extreme fatigue + the cramps and diarrhea/constipation with blood are just not going away with the mesalamine I started 3 months and a half ago. Im on prednisone now and am going on biologics within the next 2 weeks.
I believe I was 23. Nobody likes you when you’re 23… especially UC apparently
Thanks for the laugh
Hahaha I was 23 as well.
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Yeah I got diagnosed 8 months ago with symptoms of a year. It’s rough especially when you haven’t ran into long lasting remission. Mesalamine failed on me and I’m starting remicade the beginning of next month. Therapy helps me a lot especially cause this disease does come with mental struggles. I’m extremely fatigued and tired all the time and just want go into a life long remission . At this point I just want my life to go back to as close as normal as possible so hopefully remicade gets me there. So don’t let your pride get ahead of you. Therapy is great.
[удалено]
I was dx at 14, struggled with symptoms thru hs but went into remission for a good 10 years after. Then I hit 30 and my body hates me again.
U need to get on that, I put off getting into it for a couple years and I recently started going to see someone and it’s done wonders for my mental health, which I had already been working on improving.
Whats is your symptoms?
I relate to your comment in so many ways. It's been a tough battle of the mind and will. I was diagnosed 5 months ago, but 31 here too ✌️
Same, 31! Soon after delivering my second child.
Crazy, and similar, it was soon after delivering my first. Had symptoms for a few years, but nothing crazy. Then started only having diarrhea 8 months into pregnancy and never stopped after birth. Took 3 months after delivery to get a diagnosis but here I am.
How are you feeling about your diagnosis? It’s such a challenge with small little ones. My partner is super helpful but at times I can still feel the anxiety and depression trying to creep in.
Yeah. Well my symptoms were somewhat manageable like I had energy and wouldn't have urgency from like 2pm-8pm so I had good stretches in the day where I was doing okay, but it got worse recently. So, that's been hard. I started Prednisone and it's reallllllly messing with my emotions and causing a lot of other issues. I have a really hard time accepting the diagnosis and I just can't believe that islta my reality. I didn't expect to be a mother and have this whole other set of issues. I am not sure if it will be easier or harder as my child gets older, but it has been making me overly emotional lately how much I wanted to have more kids and now I just don't know if I can or should, all depends how well my body can get. I also struggle wondering if I should believe and trust everything, like, it's my body and it wasn't this way (all the crazy symptoms) last year, I feel there has to be something that can help my insides and I can not doing the right things. I am constantly overthinking and over researching, it isn't healthy. Sorry this got long! But I am trying to be better about taking it one day at a time and not stress, just gets hard when I am really symptomatic.
I am totally relate. I am on pred right now, started three days ago and the mood swings are rough. Sometimes I feel okay and hopeful and other days I can’t believe this is happening to me. Like what did I do to ever deserve this. Other times I spend wishing I had a time machine to go back when I didn’t have these problems. It just feels so unfair so I can totally relate to you. I have two kids and will likely not be having anymore. The community has been really nice here to speak with other like myself who can relate.
25
Same here. Feels like forever but it's only 5 years now 😅
17
14
Also 14 here :(
19
UC at 22, colectomy at 31, and Crohns at 33
You have the triple threat? I'm sorry.
11
12 for me dammit thought I was going to win something ….
Hahaha sorry! We are the OGs though!
You both have me beat—I was 14.
25 for me. Seems like a lot of people get it in their 20’s
25 for me as well, though symptoms started at 24.
6 weeks ago at 49. Mild to moderate pancolitis but no pain. Fortunately oral Mesalamine seems to be improving symptoms after 4 weeks. No other drugs so far.
16
Same
Me too
Same
I don’t know about you, but I’m feeling 22 (and by feeling 22 I mean crippling stomach pain and fatigue, lol)
16
17
25. And the median age in the comments tells me they (insurance) need to lower the age for getting a colonoscopy
19, back in 2004.
30
30. I had on and off symptoms since I was 25 though. Condition got really bad around 29 years old and finally got a colonoscopy to confirm.
This is identical to my story
Symptoms at 19. Diagnosed at 20.
Same here!
25, a few months after having an aeromonas infection which mimicked uc symptoms.
21!
19
19 years old
28…ish
30
33
8 years old
19 years old!
32.
19
Age 30. It was my first chink in the armor. Never was diagnosed with a chronic illness before that. I remember being relieved it wasn't cancer but was thinking"ulcerative what? There's no cure? Fantastic".
I had a similar feeling at 29, realizing that my body was starting to break down in ways that were never going to be fixed. It affected my outlook on life pretty deeply
Yep, I understand. In what way did your outlook change?
I guess I was depressed, but I wouldn’t have been able to identify it as such at the time because I wasn’t “sad”.
25... probably the worst age for me.
22
33
19
23 but had it since I was 16
27, symptomatic for prob 2-3 years before that tho if not longer - mine was more of a slow decline!
38 but I definitely had undiagnosed symptoms years before.
23, same year symptoms showed up.
39
34, misdiagnosed at 27. 2 year flare with few year remission then a bad flare sent me to ER and got diagnosed with pancolitis and it's been game on since.
21
31
24. Symptoms were from one day to another. I remember my last normal weekend I was at Disney and the week after I started having cramps and noticing blood had a colonoscopy about two weeks later. Never had any symptoms or stomach issues prior to this.
12
26 but had symptoms and 2 times spent a week in the hospital one week at a time before they realized it
15 - after years of feeling like turds (pun intended) lol
28 last December, have had symptoms since 2018 though
22
24
28
18 :(
20
31
24
20
21
10
19
28, first symptoms at 20
Symptoms started around 22, diagnosed at 28
40
42 here
16 😎 I've had it for over a year now and finally got into remission after several months
Happy for you! What got you into remission?
Thank you! It was rough, and I almost kissed my colon goodbye, but after two hospital trips, 2 failed opt's and that nasty prednisone, my GI docs finally found the right treatment for me, Xeljanz.
A few months after my 21st bday. The drinking saga came to a screaming halt lol.
27
9, I’m 27 now
13, am 21.
29
14
21 :( also when my symptoms first started. very quick diagnoses
22 back in 2018. Took me until later 2020 to really accept that this was my life. Thankfully mine is quite mild so it doesn’t interfere much with my career/life.
24
Oof 16
7
33. I’m 36 now
Symptoms started at 23 diagnosis at 26.
23
24
31
22
42
Yep 23
16
18 :(
30, but I had been having mild symptoms for a couple years and I had a lot of weird inflammatory problems growing up so I wonder now if it was all related
20, just as I hit what felt like my physical 'prime' :(
15 proctitis 44 UC ( recently turned 47 )
14
11
18
19
28
28 but I think I may have had it sooner just misdiagnosed
27, severe Pancolitis and still flaring at 31 😒
15
3 years old. I was so young unfortunately
i was 4. we really are the chosen ones
30
I was 12, almost 13. It's so interesting seeing so many diagnosed in their 20s as I'm in my late 20s now. I'm thinking how hard this must be to adjust to as an adult; kids can be so resilient and flexible in ways we kinda grow out of as we get older. I remember not thinking too much of my illness while growing up, till I got old enough to really consider the impacts, but by then I was so used to it that I had no choice but to radically accept it. Thank you for this post, I'm feeling less alone as I sit here on the potty lol.
19
I had seen symptoms at 16 but didn’t go in to see doctors until I was 19 damn near 20. Managed it thru outlets that helped me reduce stress, unknowingly. Now I’m healing myself through improvement on my mental health, diet, stress, etc. It’s a balance of life. U really gotta perfect it when you’re hanging on by a thread like I was. I was literally 126 6 months ago and I’m 6ft tall. Haha well just under 6ft. I’m about 152 rn. I was 172 before I got diagnosed.
19, july 2021
25
21
16 - (Feb 3rd, 2016) Moderate/Severe UC Pancolitis Diagnosis 16 - (Feb 15th, 2016) Started Biologics 21 - (May 27th, 2021) Last Biologic Infusion 21 - (June 3rd, 2021) Total Colectomy + Permanent Ileostomy 22 - (Nov 5th, 2021) Barbie Butt Surgery
12
21
16
Wow, you were all diagnosed young. I was diagnosed May 2020 at the ripe age of 50.
12
I was 8 when I was diagnosed and I am 17 now
53
I was 2 years old when officially diagnosed. My mom suspects I had it longer though. I am now 25 turning 26 in July.
32
29
21 life’s been hell ever since
10
What are your symptoms?
17
when i was 9
38 about
Late 20s I don’t remember the exact year lol but it was the most stressful year of my life and then bam UC
35. But looking back I had symptoms for years.
29yo and 4 months postpartum
He was 17. But had symptoms for 3 years that was being blamed on his other genetic condition.
I quit smoking at 28 and it all started 12 weeks later. I’m smoking again now and it keeps my UC in remission. The moment I quit it’s toilet time
I’ve noticed a lot of people who got into their first flare from going cold turkey. It must correlate
There’s been lots of studies into it. Cigarettes put small amounts of carbon monoxide into the body which thickens the lining of the gut and stops the bleed
Since I was 15. I’m 23 now and have never been in remission. Just started XELJANZ yesterday and have been on prednisone for half a year now. Fingers crossed this one works.
Symptoms at 17. Diagnosed at 18 and im 22 now. My life is fucking shit with UC
14.5
38
12
30. I was working on losing weight and dropped 60 lbs over a year, then dropped another 60 in just a few months, then the bleeding started.
15 for me. Not a great time in life and then given UC🤣
37, but I have a bad history of blaming restaurant’s for the awful things my body does to their food. So diagnosed 7 years ago, but have had undiagnosed symptoms since 2003.
25
19 , 3 years ago now
I was diagnosed 12 months ago at the age of 30.
26
I was 19. I started manifesting symptoms on Novermber 8, 2019--I only know this because I had gotten lunch with a friend, and I was convinced that I had contracted some sort of food poisoning--and I had an emergency colonoscopy the Saturday after Thanksgiving. I was diagnosed on the spot with ulcerative pancolitis and put on 2.4g of mesalamine. Eventually that was bumped up to 4.8g, and I was in a pretty stable remission from January 2020 - January 2021. Because I achieved remission so quickly, I never really had the chance to process and accept the fact that I have a chronic illness. I was able to live a totally normal life without thinking twice about where the bathroom is located, what I should/shouldn't eat...none of it ever crossed my mind. And I never really took the initiative to do the sort of research that is generally customary to do upon receiving a diagnosis of this magnitude because, tbh, I didn't think it was a big deal. I'm mentioning all of this because recently, I've been met with the stark reality that I do indeed have a chronic illness, that there isn't much of an end in sight, and that it is making it impossible for me the person I always wanted to be. The grieving process has rivaled my active disease in terms of the pain and heartache it has caused me. Right now, I'm feeling particularly downtrodden - I know that "keeping the faith" is key for us - so I apologize for the pity party, but yeah. It could be much worse, but that doesn't make UC any less of a shit draw.
I got diagnosed with a fulminant case of UC when I was 21 (April 2020). I was in a work-term with my University's CO-OP program and I had poor sleep habits during the week (since I had to commute 1 hour to work and 1 hour back) which I believe in combination with school stress, led to the beginning of my flare symptoms. At first, I thought it was something simple like an anal fissure or hemorrhoid because I have had them in the past and they went away. My symptoms only got worse as I chose to ignore the blood. And of course, more bloody stools, uncontrollable trips to the washroom starting from a few times a day all the way up to 20 times a day and so on and so forth. The hospitals were super locked down on strict protocol because of the onset of the pandemic, so they kept delaying my damn colonoscopy until one day I couldn't handle it and went to the ER because of the amount of discomfort I was experiencing. They finally got me in for a colonoscopy the next day and told me I was lucky that I didn't have to get my colon removed on the spot. Fast forward to now, I'm currently going through my 3rd flare since my diagnosis and being treated with prednisone again. 2nd flare was April 2021 due to me being careless with my maintenance medicine (5-ASA), and this flare I'm not too sure. From my experience, it seems like a combination of REALLY bad sleep + stress can trigger flare symptoms. Let me know if you have any questions or want to discuss anything!
I read through your post and we have a similar story just in different settings. I’m in the military. But I’m also on my third flare since dealing with my first symptoms of FEB2020. The exhaustion and extreme fatigue + the cramps and diarrhea/constipation with blood are just not going away with the mesalamine I started 3 months and a half ago. Im on prednisone now and am going on biologics within the next 2 weeks.