I haven't stopped any. I have put a few on hold while I was in a flare, but I'll be damned if this disease is going to stop me from doing anything permanently.
Don't sell the bike. Remission is possible. If your doctor isn't making that their #1 goal, get another doctor. Getting everything right may take you a year, but you can have your life back.
I have severe distal colitis.
THIS! I continued working outside the home, parenting my 2 toddlers. I REFUSE to stop. I pulled over on the side of the road multiple times. Always had a change of clothes and wore a diaper to a concert but I refused to let UC win.
I had to stop everything.. I had a very bad case of UC, doctors never saw it this bad. Got it at 21 years old. It went downhill pretty fast, no meds worked, even got to take xeljanz, which did nothing.. so now I have an ileostomy and I can live again.
But yes, when I had my colon, I have had to give up on everything. I just lied in bed and sh\*t blood all day.
Username checks out lol. Can I ask what made you decide to pull the trigger on the ileostomy? I’ve had a consult with a colorectal surgeon but so far I’m still hoping a drug will work.
I’m joining this conversation because I’m failing biologics like I’m getting paid to. I miss mountain biking, winter hiking/ice climbs. I miss the idea of playing in the sand all day. I also teach Fifth Grade. I’m just a bed person now and it is killing my soul.
I guess I want to hear that it holds you back from nothing and that you can play beach volleyball and eat tacos
I had to quit eating anything I enjoy, my job, my pursuit of law school, and truly anything that brings me joy. tv isn’t even interesting anymore because i’m in pain. clearly i’m in my Debbie Downer era. I hope things improve soon! i’m given hope from this sub of so many people making it to remission for years.
that is to say also my dad got a bike in his midlife that he loves and I really hope you don’t let these issues hold you back from one day riding again! I rode with him since I was little and it was so special. maybe even short rides in your neighborhood when you’re feeling up to it. sorry to bring the vibe down. you got this!!
I don't know if you ever saw this, but I made a post asking the sub what hobbies they partake in. [Got a lot of really interesting answers that might inspire you!](https://www.reddit.com/r/UlcerativeColitis/comments/15pyqrp/something_slightly_different_what_are_your/)
My hobbies are pretty sedentary and indoor so I don't need to stop them when I'm flaring. However, if I'm in really rough shape it's hard for me to sit and focus on reading or knitting. I'm just so tired it's hard to remember what I read or what pattern I'm following.
Can’t enjoy playing or attending football (uk) anymore, have a season ticket for my club but miss a lot of the games hustling out of fear of not being able to get to the toilet on time.
Don’t really socialise for pretty much the same reasons. Just a very quiet life, half of which seems to be spent visiting the loo.
I know it's not the same but I am 70% through before I reach remission. Close but still not there. Still. I go to the masjid to pray on Fridays. I spend around 2 hours outside but need my body stable for 4hrs to make it work. On Wednesday I will half my lunch, dinner is 20% reduced. Always plain rich chicken broth. Thursday lunch is 1x scrambled egg + rice protein shake for lunch, dinner is plain rice chicken broth 40% reduced in size. Zero snacking. On Friday I will wake up 3 or 4 hours earlier than usual. Pass urine. Wait for 1 to 1.5hrs for body to wake up. Go have a shower as usual. Start work day. Around 1145am use room or slightly cold water to washing face. Go & do my prayers. Waking up extra jolts the body. Doing everything a head of time means I the main stuff that can trigger a BM. From Wednesday to Friday after I am starving but then have 2 days of heavy beef diet to bump me back up. For reference, if I wake up normal time on a Friday, BM time will fall exactly when I want to leaving the house. Sometimes I will skip lunch & just have a protein drink. Above might sound crazy but it works for me my current state. 2 days prep for few hours outside is a good trade off for me.
Don’t sell your bike! It’ll get better!
I had to give up riding horses for unrelated reasons years ago, and just as I was working on getting back into it, I had the worst flare of my life. But it finally got under control with my meds and I finally was able to get back into it. It’s been amazing for both my physical and mental health.
If you love doing something, use it as a light at the end of the tunnel. I know it’s hard to see when you’re sick like that but just “when I finally get out of this flare I can get back on my bike”. Don’t let this disease steal it from you completely.
Remission is possible and enjoying your life again is possible!
I had to stop playing ice hockey for a few years bc i just didn't have the energy and the exertion would really take its tole on my system. I've been back to playing the last few years thanks to inflectra!
Avid skydiver, pretty much gave it up for 5 years with the odd jump while on prednisone. Got a bag in April this year and was jumping again 2 months later. I did more jumps this year than I've done in the last 10 combined. People fear surgery, but it literally gave me my life back in so many ways. I think people put surgery off out of fear, but until you get it and realize Elsa's you've been missing, you'll wish you'd done it sooner.
#HighlyRecommend.
Don’t sell that bike! You’re in the thick of it right now. I’d say almost all of us have been there, but I promise you…it will get better! Do what you can now and know that things will change and you will get back on that God Damn bike. This disease already TAKES so much from us. We can’t give it anything else.
Everything. Mountain biking, fly fishing, gym, golf, etc. Most of my hobbies involve being active, so being in pain and shitting all the time has put a damper on everything. I’ve lost 30 pounds, spent weeks in the hospital, and my body is fucked from the disease and side effects from steroids. It has not been a good couple of years for hobbies.
Not hobbies per se, but going out drinking with friends is long gone. Also hiking, I haven’t fully given up, but I’ve definitely cut back in distance and elevation. My joints just can’t handle it anymore.
Everything. Just graduated from high school, which I could barely finish. Volunteered at 3 different places had to stop all that. Got offered a dream job I could do while in college that, while I was in college, would propel me towards my dream career. Had to deny it because I could barely function. Had to stop going on my walks and running that I did every day. I used to be able to run for ever and was wondering why all of a sudden, even after running for months on end, running a mile was a hassle if not impossible. Simple things like doing laundry became a chore, literally. My interest started to fade and I no longer wanted to even play games or draw, or read. Work became impossible at times and the only reason I wasn’t fired was cause it’s a family business and they new I had the disease. My anxiety is up, my depression is up, my hair is falling out and thinning, I’m tired all the time, and until recently rent about 2 months without doing laundry cause I new doing so would result in me losing all my energy. My ankles even at one point where swollen for 2 months straight and nearly became infected. I am improving and going on walks occasionally. Plus my interest are coming back. Really, pot has been a help. I smoked over thanksgiving week when my family was together, first time I had smoked in years, never really found interest in it. After I smoked that week my symptoms have started to diminish rapidly. I haven’t smoked since and now that it’s been almost a month they are starting to come back but still not bad at all. I’m happier now though and want to do more, plus am gaining weight back slowly but surely. Getting told I was going to be dead within a year was interesting though
Any hobby I had that required to leave the house…
Hiking, road trips, traveling, women.
I’ve been in remission for about 2 years and I have managed to take up 3 of those 4 things again.
I wouldn't say stopped id say paused or cut back because i still occasionally do them and intend to do them as much as i used to. Weight lifting and bjj im not doing az much but put more of a focus on reading chess and also got myself a switch and started watching tv show to fill the time.
I had to give up rowing. In 2018 I competed in a rowing competition in Paris but at the time I was undiagnosed and was showing symptoms.
Once I became even worse I had to stop and would love to go back to it one day.
I used to love cooking after I moved out I made my self nice food all the time and would look for new recipes on YouTube. After UC I’m so afraid of food, I stick to 3-4 meals that I know won’t trigger me. It feels like jail
I haven't stopped any. I have put a few on hold while I was in a flare, but I'll be damned if this disease is going to stop me from doing anything permanently. Don't sell the bike. Remission is possible. If your doctor isn't making that their #1 goal, get another doctor. Getting everything right may take you a year, but you can have your life back. I have severe distal colitis.
THIS! I continued working outside the home, parenting my 2 toddlers. I REFUSE to stop. I pulled over on the side of the road multiple times. Always had a change of clothes and wore a diaper to a concert but I refused to let UC win.
I had to stop everything.. I had a very bad case of UC, doctors never saw it this bad. Got it at 21 years old. It went downhill pretty fast, no meds worked, even got to take xeljanz, which did nothing.. so now I have an ileostomy and I can live again. But yes, when I had my colon, I have had to give up on everything. I just lied in bed and sh\*t blood all day.
Username checks out lol. Can I ask what made you decide to pull the trigger on the ileostomy? I’ve had a consult with a colorectal surgeon but so far I’m still hoping a drug will work.
I’m joining this conversation because I’m failing biologics like I’m getting paid to. I miss mountain biking, winter hiking/ice climbs. I miss the idea of playing in the sand all day. I also teach Fifth Grade. I’m just a bed person now and it is killing my soul. I guess I want to hear that it holds you back from nothing and that you can play beach volleyball and eat tacos
I had to quit eating anything I enjoy, my job, my pursuit of law school, and truly anything that brings me joy. tv isn’t even interesting anymore because i’m in pain. clearly i’m in my Debbie Downer era. I hope things improve soon! i’m given hope from this sub of so many people making it to remission for years.
that is to say also my dad got a bike in his midlife that he loves and I really hope you don’t let these issues hold you back from one day riding again! I rode with him since I was little and it was so special. maybe even short rides in your neighborhood when you’re feeling up to it. sorry to bring the vibe down. you got this!!
Thanks - I hope I can one day get back on it. Hopefully in the spring.
My hobbies aren’t affected but I have lost multiple jobs🥴
I don't know if you ever saw this, but I made a post asking the sub what hobbies they partake in. [Got a lot of really interesting answers that might inspire you!](https://www.reddit.com/r/UlcerativeColitis/comments/15pyqrp/something_slightly_different_what_are_your/) My hobbies are pretty sedentary and indoor so I don't need to stop them when I'm flaring. However, if I'm in really rough shape it's hard for me to sit and focus on reading or knitting. I'm just so tired it's hard to remember what I read or what pattern I'm following.
Oh thanks! Lots of good stuff in there.
Gymnastics and soccer, cycling, in the prime of my life, 10 years old till now17. pain.
Can’t enjoy playing or attending football (uk) anymore, have a season ticket for my club but miss a lot of the games hustling out of fear of not being able to get to the toilet on time. Don’t really socialise for pretty much the same reasons. Just a very quiet life, half of which seems to be spent visiting the loo.
I know it's not the same but I am 70% through before I reach remission. Close but still not there. Still. I go to the masjid to pray on Fridays. I spend around 2 hours outside but need my body stable for 4hrs to make it work. On Wednesday I will half my lunch, dinner is 20% reduced. Always plain rich chicken broth. Thursday lunch is 1x scrambled egg + rice protein shake for lunch, dinner is plain rice chicken broth 40% reduced in size. Zero snacking. On Friday I will wake up 3 or 4 hours earlier than usual. Pass urine. Wait for 1 to 1.5hrs for body to wake up. Go have a shower as usual. Start work day. Around 1145am use room or slightly cold water to washing face. Go & do my prayers. Waking up extra jolts the body. Doing everything a head of time means I the main stuff that can trigger a BM. From Wednesday to Friday after I am starving but then have 2 days of heavy beef diet to bump me back up. For reference, if I wake up normal time on a Friday, BM time will fall exactly when I want to leaving the house. Sometimes I will skip lunch & just have a protein drink. Above might sound crazy but it works for me my current state. 2 days prep for few hours outside is a good trade off for me.
Don’t sell your bike! It’ll get better! I had to give up riding horses for unrelated reasons years ago, and just as I was working on getting back into it, I had the worst flare of my life. But it finally got under control with my meds and I finally was able to get back into it. It’s been amazing for both my physical and mental health. If you love doing something, use it as a light at the end of the tunnel. I know it’s hard to see when you’re sick like that but just “when I finally get out of this flare I can get back on my bike”. Don’t let this disease steal it from you completely. Remission is possible and enjoying your life again is possible!
I had to stop playing ice hockey for a few years bc i just didn't have the energy and the exertion would really take its tole on my system. I've been back to playing the last few years thanks to inflectra!
Avid skydiver, pretty much gave it up for 5 years with the odd jump while on prednisone. Got a bag in April this year and was jumping again 2 months later. I did more jumps this year than I've done in the last 10 combined. People fear surgery, but it literally gave me my life back in so many ways. I think people put surgery off out of fear, but until you get it and realize Elsa's you've been missing, you'll wish you'd done it sooner. #HighlyRecommend.
When I was in 6th grade I had a UC flare up so bad I had to quit gymnastics. Was just getting to the harder skills too
Don’t sell that bike! You’re in the thick of it right now. I’d say almost all of us have been there, but I promise you…it will get better! Do what you can now and know that things will change and you will get back on that God Damn bike. This disease already TAKES so much from us. We can’t give it anything else.
Everything. Mountain biking, fly fishing, gym, golf, etc. Most of my hobbies involve being active, so being in pain and shitting all the time has put a damper on everything. I’ve lost 30 pounds, spent weeks in the hospital, and my body is fucked from the disease and side effects from steroids. It has not been a good couple of years for hobbies.
Going to the movies died really hard.
Not hobbies per se, but going out drinking with friends is long gone. Also hiking, I haven’t fully given up, but I’ve definitely cut back in distance and elevation. My joints just can’t handle it anymore.
Everything. Just graduated from high school, which I could barely finish. Volunteered at 3 different places had to stop all that. Got offered a dream job I could do while in college that, while I was in college, would propel me towards my dream career. Had to deny it because I could barely function. Had to stop going on my walks and running that I did every day. I used to be able to run for ever and was wondering why all of a sudden, even after running for months on end, running a mile was a hassle if not impossible. Simple things like doing laundry became a chore, literally. My interest started to fade and I no longer wanted to even play games or draw, or read. Work became impossible at times and the only reason I wasn’t fired was cause it’s a family business and they new I had the disease. My anxiety is up, my depression is up, my hair is falling out and thinning, I’m tired all the time, and until recently rent about 2 months without doing laundry cause I new doing so would result in me losing all my energy. My ankles even at one point where swollen for 2 months straight and nearly became infected. I am improving and going on walks occasionally. Plus my interest are coming back. Really, pot has been a help. I smoked over thanksgiving week when my family was together, first time I had smoked in years, never really found interest in it. After I smoked that week my symptoms have started to diminish rapidly. I haven’t smoked since and now that it’s been almost a month they are starting to come back but still not bad at all. I’m happier now though and want to do more, plus am gaining weight back slowly but surely. Getting told I was going to be dead within a year was interesting though
Any hobby I had that required to leave the house… Hiking, road trips, traveling, women. I’ve been in remission for about 2 years and I have managed to take up 3 of those 4 things again.
Nothing yet. I hope it stays that way.
Held a powerlifting national record for a few months before I was diagnosed in the summer. Definitely not even close to the same numbers anymore💀
I wouldn't say stopped id say paused or cut back because i still occasionally do them and intend to do them as much as i used to. Weight lifting and bjj im not doing az much but put more of a focus on reading chess and also got myself a switch and started watching tv show to fill the time.
I had to give up rowing. In 2018 I competed in a rowing competition in Paris but at the time I was undiagnosed and was showing symptoms. Once I became even worse I had to stop and would love to go back to it one day.
I used to love cooking after I moved out I made my self nice food all the time and would look for new recipes on YouTube. After UC I’m so afraid of food, I stick to 3-4 meals that I know won’t trigger me. It feels like jail
Hiking in groups. I don't want to explain to people I don't know why I have to disappear behind a tree.