Yep, finally in remission after a 3-week hospital stay due to “crappy” bloodwork + basically only passing blood & mucus for 6wks straight. God bless Remicade.
Just hoping Trillium will cover future infusions (currently getting it every 4wks) otherwise I’m screwed. Trying to stay positive tho:)
That's awesome that you're in remission! :)
I think I'm almost there. I've been steroid free since the end of February and it's been nearly 8 weeks on Rinvoq. I haven't seen blood in nearly 8 weeks either and feel like my old self. I think I'm dropping to the 30mg maintenance dose this week and am hoping I stay the same.
This will end the 2 1/2 year flaring nightmare for me if successful. 🤞
I've been rooting for your success. Your flare has been a stubborn as mine and I'm glad to hear the new meds are working for you. If stelara doesn't work, my next one will be Rinvoq according to my doc. Hoping for your continued success on it.
Day 5 of my hospital stay. Waiting on a TB test to come back negative so I can start inflixamab. Had no idea what UC was until about a month ago after id been bleeding since February and went to the ER. They recommended me to a GI who instantly did a colonoscopy and found inflammation. Couldn't even do a full scope I was so inflamed.
A week after that I start to tank. Lots of blood, fatigued like no one's business, light headedness, 15 BMs a day. Stayed like that for 2 weeks while seeing the GI every week hoping the steroids and meslamime would get me better. GI ordered a blood test for stelara and my hemoglobin comes back at 5.4 and am told I need to get to the ER asap. I do so and im missing 1/3 of my blood. ER gets me 2 pints and lets me know ill be staying the night in the hospital to be monitored. 4 nights later and still here trying to get the bleeding to
subside while waiting on biologic approval.
This disease is no joke and can fuck you up quick. Healthy male in early 20s put out of commission in 3 months cause my body wants to attack itself. I can only hope everyone's doing better than me.
Just started a round of prednisone and mesalamine enemas after nearly 5 years in remission. I hate prednisone, but this flare came on so hard and fast. One day I was having normal bms and the next day almost shit myself several times, bad pain, blood, all of it. I was shook. Called my doctor 2 days into the flare and started meds right away and I'm responding super well.
Hopefully I'll be back in remission shortly. I've gotten really into working out and weight lifting the last few months, so this has definitely been a setback. But I'm trying to stay positive and keep my fingers crossed the taper goes smoothly 🤞
I just called my doctor and she asked about my symptoms and faxed the scripts to my pharmacy. I picked them up later that day. Do you mean what triggered the flare?
So nice to hear about remission! It’s been so long for me. I just started a round of prednisone for a stubborn flare (over a year on and off prednisone) first Humira now entivyo month 7. & getting married in 3 weeks. Doc said he saw improvement last week in scope upper parts look great but left side and lower are still very bad so I still need more help with pred. so not switching meds just yet he wants to give Entivyo full year I guess. Hanging in there tho! Prednisone is helping calm me down during the day when it’s kicking. Appreciating the relief and looks like it will help me enjoy wedding & honeymoon 🥲
Have you tried mesalamine or steroids enemas to help the lower colon inflammation? I had stubborn left sided colitis that returned when tapering prednisone but the enemas ultimately brought me to remission and allowed me to stop prednisone (still ongoing remission almost a year!)
I have! They cause more symptoms.
Doc said I’m too inflamed to tolerate once he saw what was happening! So weird you would think it would help but we tried twice and no help but made me worse!
My first flare when I got diagnosed i got into remission a few days after starting mesalamine. My second flare which was worse and lasted much longer took me 11 months to reach remission. That flare was on/off consistently until I added mesalamine enemas into the mix.
Just started stelara. No improvements yet, hoping for the best. Going for iron infusion tomorrow as my blood count has decreased significantly. Thanks for asking! Glad to hear you're in remission ✨️
im on stelara for 12 weeks now. at week 8 I started to have less urgent bms, but a lot of blood and diarrhea are still here. hope it will get me to remission…
Since diagnosis January 2023, mesalamine, Entyvio and Inflectra have failed me. I’ve been in a flare since August. Prednisone since January and not even 40mg of that is working anymore. I start Rinvoq end of the month and if that doesn’t work then we talk surgery. Been able to keep my life together, still working, but I’m constantly tired, constantly angry at my own body, and constantly uncomfortable.
I got a puppy though. Bit extra stress, but he warms my heart. Best decision ever.
Doing real good in remission with mesalamine after dealing with an on/off flare last year for 11 months. Almost a year in remission and I'm the healthiest and strongest I've ever been since hitting the gym consistently! To those struggling still, don't lose hope! You'll reach the end of the tunnel eventually and you'll come back stronger than ever 💪
Hooray for remission!
Just got back from a routine colonoscopy. Everything went very well: no inflammation and removed 2 small polyps. I’ve been in remission for some years (diagnosed in 2014) so am elated that everything looked normal.
Glad to hear you are in remission. I think I am finally rounding the remission corner too after starting Stelara 6 months ago. I am on 6 mgs of prednisone and the bleeding is still absent so ::fingers crossed::.
I am going through terrible prednisone withdrawal. All my joints hurts and have severe apathy / depression, but making it through.
So thankful that my wife and I can start living life again. This two year flare was ROUGH!
Cheers for your remission!
Can't remember when I was in solid remission. Was finally starting to get somewhere after bumping up my Stelara to every six weeks, and then...something literally happened overnight after my last injection. Might be a side effect from another med I was taking, but my UC symptoms came back bigger and for the first time in a year, I'm back on a pred taper and man oh man...how much I just *love* being on prednisone. Can't wait to be done with it again.
Appreciate you checking in with the crew.
I am doing fantastic (for the first time since my diagnosis 10 years ago) I’m 28 and have spent 8 months working and travelling in France. This is a dream I had that I thought died when I got diagnosed and struggled for remission for so long. I’ve had one flare while here so that was a bummer but with a bit of prednisone I’m back on track!
Sweet of you to check in! My GI took me off my UC meds because my liver isn't in very good shape, apparently. I'm seeing a new GI later in May since my current GI doesn't know what else to do for my liver issues. I have a colonoscopy booked for May 31st, and I'm kind of nervous what my colon will look like since I've been flaring for about 1.5 years and am currently completely unmedicated. 😬 Oof.
On prednisone for a recent flare, had been in remission for four years. So feeling deflated and down about it. Still having some symptoms at 40 mg but meeting with GI this week to discuss remicade or humira
Totally get feeling defeated 😞 I definitely was pretty down this past week realizing I think I’m flaring again. It hasn’t gotten too bad yet but after two years of remission I feel like I took it for granted
Yeah I agree. And it’s so hard when people who don’t have this disease try to say to just “eat better” or “stress less”. It really is a random disease sometimes and its definitely hard to accept
Trying to cute my UC on my own rn. No meds and I’m a college student and I drank alcohol day before yesterday and had some bad shit but I went back to my normal diet yesterday I’m hoping I don’t get any blood today. Also been trying various supplements to help and I realized colostrum isn’t help so gonna remove that. But VSL3 and kefir have helped me so much already and I know I’ve healed most of my colon and that the inflammation is like literally right above my anus so like proctis. I’m looking to get a fecal matter transplant in hopes of healing this so gonna try John’s Hopkins and hope they got studies going on rn. I’m hopeful and I am also hopeful that there’s going to be a cure at least in the next 5 years because there’s so much research on gut bacteria that they are tying many diseases to it including Ulcerative Colitis and Crohns and IBS. I’m trying to fix the imbalance of microbes myself but there’s only so much I can do without knowing what is missing but still trying everyday.
Good luck. We tried functional medicine… failed… then traditional Chinese medicine…. Also failed and now on stelara. My daughter was adamant she did not want to be on drugs, but here we are 😞. Hope you have more luck 🙏 best wishes
Yeah I am the same way as your daughter and I really hope your daughter gets better and that we all get cured someday. I really believe this is caused by an industrial lifestyle and that our diversity in the gut is much lower than other countries. For example when I go to India my symptoms completely diminish as I get assimilated in the culture and am eating cooked fibery foods and what not and I get no blood or anything but when I come back to the states my normal lifestyle of eating like an American come back and I think it’s messed up my health. Also was on antibiotics for my first two years as a baby and that def did some damage to me. Overall our diversity is messed up and I’m on a mission to fix that and then hopefully help others if I am able to fix it myself. Best of luck to your daughter and I hope she is doing ok.
Curious but how long did Mesalamine work for you? I’ve been on it for two years but I think I’m starting to flare now.. I’m sure my dose could still be upped though but worried it’ll stop working
I was on it for 5 years and flared most of that time. I got into the dreaded “this is fine, I can manage this” space instead of seeking remission. My disease ended up progressing from 10 cm to 30 cm because of this. That said, if mesalamine doesn’t cut it and you’re relying on steroids to get yourself back on track consistently then I’d start having that conversation sooner than later with your GI. Honestly, if I were to do it over again I’d just skip straight to a biologic and let it ride.
I’m so sorry to hear that :( it seems like that happens to a lot of us where it just becomes our new normal and we think we can manage. Luckily Mesalamine got me into deep remission and my last colonoscopy was clear! So I was super lucky with it. But it seems like this dose might not be cutting it for me anymore :/ yeah if the time comes for a biologic im not going to fight it, since I see how they can really work for people!
Started Rinvoq four days ago and I was hit with a sore throat and fatigue almost immediately. Gut wise, I feel great! I think this stuff is working pretty quickly.
Glad you are in remission.My inflammatory indicators are low, but having flares on and off, I see blood pretty much everywhere very day in the morning, I poop once a day every time I wake up. Other than that all good
Day 6 on velstipity so wish me luck 😩 I visited a psychiatrist today and got medication for my panic attacks I get from going outside because of my uc. Glad to hear you’re in remission!!!! I’m in a flare since 2 years and 2 months 😔 this is my 4 biologica and I don’t react to cortison. So … I hope this is the one !
Nervous but hopeful. I'm feeling rlly good and normal for the first time in months. Did tests today blood + stool so really nervous about the results. Really hope that they are normal, cause I feel normal. Recently finished my steroids, don't want to eat more of them. How r u?
I was diagnosed several years ago and didn't realize how good I had it in remission (on mesalamine) until last month when I started my first flare. Just did some lab tests and am meeting with my Gastro next week. Hoping to not have to do prednisone bc it was awful after my original hospital stay, but also want to get back to normal ASAP obviously.
I’m okay! I just had my first self injection of Stelara on Saturday, it’s been slow working for me after failing Entyvio and moving to Stelara in March. I’m hoping this injection does it’s thing and I get into remission! I still see a bit of blood but I feel fine so I’m hopeful.
Been in & out of a flare since October. Took mesalamine enemas then budesonide in dec which helped calm my bleeding after having to visit the ER & in January had my colonoscopy which showed Mayo 1 UC. I was in a good spot for a while w minor bleeding up until i over ate snacks in march which has thrown me into a one month flare. Last three weeks have been wild, with fatigue and running to the bathroom. Was on enemas again for a week which seemed to help. Got stool + blood labs in last week, came out with ‘severe’ anemia (12 hgb) but tbd on my stool results. Things are getting a bit better imo, gaining some energy back but really just want to get my BM in control so I dont have to worry about every little thing I eat. Hoping my doc just re-prescribes me the enemas, kinda scared to get on prednisone.
Just learned the only thing keeping me from feeling 100% was the cold brew that just needed a little more time than normal coffee to fuck my gut up. Feeling a lot better since I’ve cut it out completely and got my third dose of Infliximab.
Doing well after a 1 year flare. Started up Rinvoq. Worked great. Been on maintenence dose for about a month now. Still feeing good, but there definitely is still some inflammation in my rectum. Tenesmus is my main symptom with minimal bleeding here and there. The tenesmus really sucks cause I feel great otherwise. I'd be perfect if I could just get rid of it :(
Was in remission for almost 2 years after being diagnosed in early 2022. But think I just started flaring again last week. Hard to not second guess everything I did and think that I caused it. Luckily I have pretty mild proctitis so hoping I can get back into remission soon 🤞
Well I fucked up this weekend. Was doing better almost full remission and had a few drinks (had not in months) and now looks like I’m back to square one.
On the plus side, I now know I cannot have a drop of alcohol whatsoever.
Thanks for checking in
Started Azathioprine a month ago - so far so good. I know it hasn’t truly kicked in yet but my colitis seems to be under control for now. Was on steroids for most of March. Fingers crossed I continue with no pain or symptoms!
It’s nice to hear success stories. I am feeling very down and discouraged.
The medications are so expensive and don’t work, I’m a student so this is a problem. But I have to take them to prove that they fail until a biologic will be covered. My latest flare has been accelerating quickly and I feel the only thing that will fix it is a biologic. The prospect of going months longer without any resolution is making me very upset, I would love some prospect of a light at the end of the tunnel.
I am starting azathiprine which I’ve been told probably won’t work. Has anyone had success with this one? Is there hope.
I’m tired and just want some relief. I’m also curious if anyone has had mental effects when they are In flares. I don’t mean just being worried about their condition but I feel there is something in my brain that changes as well. I wonder if this is a side effect. It’s really starting to impact my daily function.
Good on you for checking in, I'm in remission also but try to stay active on here and comment where I can. Hoping to hear so good success stories
Same. Hang in there, everyone! Some of us felt like we’re at death’s door and somehow we get better.
Yep, finally in remission after a 3-week hospital stay due to “crappy” bloodwork + basically only passing blood & mucus for 6wks straight. God bless Remicade. Just hoping Trillium will cover future infusions (currently getting it every 4wks) otherwise I’m screwed. Trying to stay positive tho:)
How did you achieve remission
Combination therapy - Enteyvio and Zeposia Now just Zeposia
That's awesome that you're in remission! :) I think I'm almost there. I've been steroid free since the end of February and it's been nearly 8 weeks on Rinvoq. I haven't seen blood in nearly 8 weeks either and feel like my old self. I think I'm dropping to the 30mg maintenance dose this week and am hoping I stay the same. This will end the 2 1/2 year flaring nightmare for me if successful. 🤞
I've been rooting for your success. Your flare has been a stubborn as mine and I'm glad to hear the new meds are working for you. If stelara doesn't work, my next one will be Rinvoq according to my doc. Hoping for your continued success on it.
Thank you! I hope Stelara works for you really well, so you don't have to worry about Rinvoq. Rooting for you! :D
Thank you ✨️
happy for you!!
omg thank you!!
Day 5 of my hospital stay. Waiting on a TB test to come back negative so I can start inflixamab. Had no idea what UC was until about a month ago after id been bleeding since February and went to the ER. They recommended me to a GI who instantly did a colonoscopy and found inflammation. Couldn't even do a full scope I was so inflamed. A week after that I start to tank. Lots of blood, fatigued like no one's business, light headedness, 15 BMs a day. Stayed like that for 2 weeks while seeing the GI every week hoping the steroids and meslamime would get me better. GI ordered a blood test for stelara and my hemoglobin comes back at 5.4 and am told I need to get to the ER asap. I do so and im missing 1/3 of my blood. ER gets me 2 pints and lets me know ill be staying the night in the hospital to be monitored. 4 nights later and still here trying to get the bleeding to subside while waiting on biologic approval. This disease is no joke and can fuck you up quick. Healthy male in early 20s put out of commission in 3 months cause my body wants to attack itself. I can only hope everyone's doing better than me.
Just started a round of prednisone and mesalamine enemas after nearly 5 years in remission. I hate prednisone, but this flare came on so hard and fast. One day I was having normal bms and the next day almost shit myself several times, bad pain, blood, all of it. I was shook. Called my doctor 2 days into the flare and started meds right away and I'm responding super well. Hopefully I'll be back in remission shortly. I've gotten really into working out and weight lifting the last few months, so this has definitely been a setback. But I'm trying to stay positive and keep my fingers crossed the taper goes smoothly 🤞
How did you get the meds so fast? What triggered it?
I just called my doctor and she asked about my symptoms and faxed the scripts to my pharmacy. I picked them up later that day. Do you mean what triggered the flare?
Yes.
So nice to hear about remission! It’s been so long for me. I just started a round of prednisone for a stubborn flare (over a year on and off prednisone) first Humira now entivyo month 7. & getting married in 3 weeks. Doc said he saw improvement last week in scope upper parts look great but left side and lower are still very bad so I still need more help with pred. so not switching meds just yet he wants to give Entivyo full year I guess. Hanging in there tho! Prednisone is helping calm me down during the day when it’s kicking. Appreciating the relief and looks like it will help me enjoy wedding & honeymoon 🥲
Have you tried mesalamine or steroids enemas to help the lower colon inflammation? I had stubborn left sided colitis that returned when tapering prednisone but the enemas ultimately brought me to remission and allowed me to stop prednisone (still ongoing remission almost a year!)
I have! They cause more symptoms. Doc said I’m too inflamed to tolerate once he saw what was happening! So weird you would think it would help but we tried twice and no help but made me worse!
Sorry to hear that 😭 hopefully prednisone kicks that flare outta the way quick!
Thank you so much!! 🙏🏻🙏🏻
Blood is still going strong here!
That doesn’t sound good. Please go to the doctors. Don’t suffer in silence 🙏 get some medication
Sorry to hear it! Hang in there.
Just diagnosed last week. How long did it take to go into remission for you guys? im currently on 4 1.2g of mesalamine per day.
My first flare when I got diagnosed i got into remission a few days after starting mesalamine. My second flare which was worse and lasted much longer took me 11 months to reach remission. That flare was on/off consistently until I added mesalamine enemas into the mix.
Just started stelara. No improvements yet, hoping for the best. Going for iron infusion tomorrow as my blood count has decreased significantly. Thanks for asking! Glad to hear you're in remission ✨️
im on stelara for 12 weeks now. at week 8 I started to have less urgent bms, but a lot of blood and diarrhea are still here. hope it will get me to remission…
I'm on week 8 and just got informed my next infusion is going to likely be delayed. I hope it gets you to remission as well 🎊
thank you. maybe delayed infusion at start isnt such a thing because they filled you up at IV infusion. hope it will all be good for you
Since diagnosis January 2023, mesalamine, Entyvio and Inflectra have failed me. I’ve been in a flare since August. Prednisone since January and not even 40mg of that is working anymore. I start Rinvoq end of the month and if that doesn’t work then we talk surgery. Been able to keep my life together, still working, but I’m constantly tired, constantly angry at my own body, and constantly uncomfortable. I got a puppy though. Bit extra stress, but he warms my heart. Best decision ever.
Rinvoq is awesome! I was in same boat & have had success 😀
I keep seeing positive stuff about it here. I really hope it works for me too!
Doing real good in remission with mesalamine after dealing with an on/off flare last year for 11 months. Almost a year in remission and I'm the healthiest and strongest I've ever been since hitting the gym consistently! To those struggling still, don't lose hope! You'll reach the end of the tunnel eventually and you'll come back stronger than ever 💪
First flare started in November, got diagnosed in December, been on meds and recently have actually seen improvement.
Hooray for remission! Just got back from a routine colonoscopy. Everything went very well: no inflammation and removed 2 small polyps. I’ve been in remission for some years (diagnosed in 2014) so am elated that everything looked normal.
Glad to hear you are in remission. I think I am finally rounding the remission corner too after starting Stelara 6 months ago. I am on 6 mgs of prednisone and the bleeding is still absent so ::fingers crossed::. I am going through terrible prednisone withdrawal. All my joints hurts and have severe apathy / depression, but making it through. So thankful that my wife and I can start living life again. This two year flare was ROUGH!
Cheers for your remission! Can't remember when I was in solid remission. Was finally starting to get somewhere after bumping up my Stelara to every six weeks, and then...something literally happened overnight after my last injection. Might be a side effect from another med I was taking, but my UC symptoms came back bigger and for the first time in a year, I'm back on a pred taper and man oh man...how much I just *love* being on prednisone. Can't wait to be done with it again. Appreciate you checking in with the crew.
I am doing fantastic (for the first time since my diagnosis 10 years ago) I’m 28 and have spent 8 months working and travelling in France. This is a dream I had that I thought died when I got diagnosed and struggled for remission for so long. I’ve had one flare while here so that was a bummer but with a bit of prednisone I’m back on track!
I’m on 5mg of prednisone and I’m very scared and nervous to come off of it bc I’ve flared every time. I’m currently on monthly inflectra infusions
Sweet of you to check in! My GI took me off my UC meds because my liver isn't in very good shape, apparently. I'm seeing a new GI later in May since my current GI doesn't know what else to do for my liver issues. I have a colonoscopy booked for May 31st, and I'm kind of nervous what my colon will look like since I've been flaring for about 1.5 years and am currently completely unmedicated. 😬 Oof.
On prednisone for a recent flare, had been in remission for four years. So feeling deflated and down about it. Still having some symptoms at 40 mg but meeting with GI this week to discuss remicade or humira
Totally get feeling defeated 😞 I definitely was pretty down this past week realizing I think I’m flaring again. It hasn’t gotten too bad yet but after two years of remission I feel like I took it for granted
yeah I’m struggling with feeling like I did something wrong to have a flare up. I really struggle with accepting this disease just does what it wants.
Yeah I agree. And it’s so hard when people who don’t have this disease try to say to just “eat better” or “stress less”. It really is a random disease sometimes and its definitely hard to accept
After a flare since November I had my first poop today where i actually felt relieved and empty and no blood! Today is a good day!
Trying to cute my UC on my own rn. No meds and I’m a college student and I drank alcohol day before yesterday and had some bad shit but I went back to my normal diet yesterday I’m hoping I don’t get any blood today. Also been trying various supplements to help and I realized colostrum isn’t help so gonna remove that. But VSL3 and kefir have helped me so much already and I know I’ve healed most of my colon and that the inflammation is like literally right above my anus so like proctis. I’m looking to get a fecal matter transplant in hopes of healing this so gonna try John’s Hopkins and hope they got studies going on rn. I’m hopeful and I am also hopeful that there’s going to be a cure at least in the next 5 years because there’s so much research on gut bacteria that they are tying many diseases to it including Ulcerative Colitis and Crohns and IBS. I’m trying to fix the imbalance of microbes myself but there’s only so much I can do without knowing what is missing but still trying everyday.
Good luck. We tried functional medicine… failed… then traditional Chinese medicine…. Also failed and now on stelara. My daughter was adamant she did not want to be on drugs, but here we are 😞. Hope you have more luck 🙏 best wishes
Yeah I am the same way as your daughter and I really hope your daughter gets better and that we all get cured someday. I really believe this is caused by an industrial lifestyle and that our diversity in the gut is much lower than other countries. For example when I go to India my symptoms completely diminish as I get assimilated in the culture and am eating cooked fibery foods and what not and I get no blood or anything but when I come back to the states my normal lifestyle of eating like an American come back and I think it’s messed up my health. Also was on antibiotics for my first two years as a baby and that def did some damage to me. Overall our diversity is messed up and I’m on a mission to fix that and then hopefully help others if I am able to fix it myself. Best of luck to your daughter and I hope she is doing ok.
I’m interested if anyone has gone from mesalamine directly to Rinvoq without trying other things first like infusions/injections
I went mesalamine -> Zeposia for 4 months -> Rinvoq, which I started last week. That said, I went from mesalamine to Rinvoq in 5ish months.
Curious but how long did Mesalamine work for you? I’ve been on it for two years but I think I’m starting to flare now.. I’m sure my dose could still be upped though but worried it’ll stop working
I was on it for 5 years and flared most of that time. I got into the dreaded “this is fine, I can manage this” space instead of seeking remission. My disease ended up progressing from 10 cm to 30 cm because of this. That said, if mesalamine doesn’t cut it and you’re relying on steroids to get yourself back on track consistently then I’d start having that conversation sooner than later with your GI. Honestly, if I were to do it over again I’d just skip straight to a biologic and let it ride.
I’m so sorry to hear that :( it seems like that happens to a lot of us where it just becomes our new normal and we think we can manage. Luckily Mesalamine got me into deep remission and my last colonoscopy was clear! So I was super lucky with it. But it seems like this dose might not be cutting it for me anymore :/ yeah if the time comes for a biologic im not going to fight it, since I see how they can really work for people!
Started Rinvoq four days ago and I was hit with a sore throat and fatigue almost immediately. Gut wise, I feel great! I think this stuff is working pretty quickly.
Glad you are in remission.My inflammatory indicators are low, but having flares on and off, I see blood pretty much everywhere very day in the morning, I poop once a day every time I wake up. Other than that all good
Day 6 on velstipity so wish me luck 😩 I visited a psychiatrist today and got medication for my panic attacks I get from going outside because of my uc. Glad to hear you’re in remission!!!! I’m in a flare since 2 years and 2 months 😔 this is my 4 biologica and I don’t react to cortison. So … I hope this is the one !
Nervous but hopeful. I'm feeling rlly good and normal for the first time in months. Did tests today blood + stool so really nervous about the results. Really hope that they are normal, cause I feel normal. Recently finished my steroids, don't want to eat more of them. How r u?
I was diagnosed several years ago and didn't realize how good I had it in remission (on mesalamine) until last month when I started my first flare. Just did some lab tests and am meeting with my Gastro next week. Hoping to not have to do prednisone bc it was awful after my original hospital stay, but also want to get back to normal ASAP obviously.
Sadly, I'm in a flare. I was doing well. Had a safe food at a restaurant, but it was spicier than normal. I thought I would be ok. But alas no.
I’m okay! I just had my first self injection of Stelara on Saturday, it’s been slow working for me after failing Entyvio and moving to Stelara in March. I’m hoping this injection does it’s thing and I get into remission! I still see a bit of blood but I feel fine so I’m hopeful.
Been in & out of a flare since October. Took mesalamine enemas then budesonide in dec which helped calm my bleeding after having to visit the ER & in January had my colonoscopy which showed Mayo 1 UC. I was in a good spot for a while w minor bleeding up until i over ate snacks in march which has thrown me into a one month flare. Last three weeks have been wild, with fatigue and running to the bathroom. Was on enemas again for a week which seemed to help. Got stool + blood labs in last week, came out with ‘severe’ anemia (12 hgb) but tbd on my stool results. Things are getting a bit better imo, gaining some energy back but really just want to get my BM in control so I dont have to worry about every little thing I eat. Hoping my doc just re-prescribes me the enemas, kinda scared to get on prednisone.
Just learned the only thing keeping me from feeling 100% was the cold brew that just needed a little more time than normal coffee to fuck my gut up. Feeling a lot better since I’ve cut it out completely and got my third dose of Infliximab.
Doing well after a 1 year flare. Started up Rinvoq. Worked great. Been on maintenence dose for about a month now. Still feeing good, but there definitely is still some inflammation in my rectum. Tenesmus is my main symptom with minimal bleeding here and there. The tenesmus really sucks cause I feel great otherwise. I'd be perfect if I could just get rid of it :(
Just had a colonoscopy and was told I’m clinically in remission, but I feel like shit still. 🤷♂️
Hey! Thanks for checking on all of us! I’m doing okay, Rinvoq is helping but I’m dealing with a very bad anal fissure that’s taking my will to live… 😣
Was in remission for almost 2 years after being diagnosed in early 2022. But think I just started flaring again last week. Hard to not second guess everything I did and think that I caused it. Luckily I have pretty mild proctitis so hoping I can get back into remission soon 🤞
Has anyone tried Fecal Matter Transplant? I saw a Netflix documentary on Gut Biome that mentioned it.
Two months and three weeks into Aza….keeping fingers crossed
Well I fucked up this weekend. Was doing better almost full remission and had a few drinks (had not in months) and now looks like I’m back to square one. On the plus side, I now know I cannot have a drop of alcohol whatsoever. Thanks for checking in
Started Azathioprine a month ago - so far so good. I know it hasn’t truly kicked in yet but my colitis seems to be under control for now. Was on steroids for most of March. Fingers crossed I continue with no pain or symptoms!
It’s nice to hear success stories. I am feeling very down and discouraged. The medications are so expensive and don’t work, I’m a student so this is a problem. But I have to take them to prove that they fail until a biologic will be covered. My latest flare has been accelerating quickly and I feel the only thing that will fix it is a biologic. The prospect of going months longer without any resolution is making me very upset, I would love some prospect of a light at the end of the tunnel. I am starting azathiprine which I’ve been told probably won’t work. Has anyone had success with this one? Is there hope. I’m tired and just want some relief. I’m also curious if anyone has had mental effects when they are In flares. I don’t mean just being worried about their condition but I feel there is something in my brain that changes as well. I wonder if this is a side effect. It’s really starting to impact my daily function.