Awful last week or so but I know others have it much worse. Had a great time at my brother's wedding and paying for it (10 hours of drinking and a BBQ buffet is not UC safe but alas I haven't done "human" activities since my diagnosis so I needed it).
Yea hospital is the tipping point for sure lmao, unless it was like, someone's making a frat comedy movie about how crazy your Vegas trip was kinda of fun maybe
Finishing up my 4th month on Rinvoq and I feel fantastic. This is the longest I've been symptom free and also off of Prednisone since 2021. I can enjoy food again and can live my life. I'm ecstatic and hoping it's an actual full remission that lasts for a very long time like my last one did. š¤
Hi. Iām starting on Rinvoq next month after a successful 3 years on Xeljansz. Doc . Said he skips Xeljansz now and goes straight to Rinvoq. its only 1 pill a day so itās easier to take. Will start on 40mg. What dosage do you take?
I'm on the higher maintenance dose of 30mg. I started on 45mg. I haven't heard of 40mg being a dose for Rinvoq as the pills come in 45mg, 30mg, and 15mg tablets.
Not so hot. Flaring for ever and nothing is working. First inflixumab infusion tomorrow. Keeping my fingers and toes crossed that this will be the one and I might stop shitting my bloody brains out
Thank you!! Iām trying not to be nervous, Iāve never had an infusion for a medication before. Iām sure itāll be fine but ya. Fingers crossed! My appointment is in a couple of hours
They wanted me to start that, but my insurance is an asshole. I failed Hadlima, so now itās inflixumab, and I have to fail this and I think Entyvio before it will cover Rinvoq. I wish I could do that now!
Well I known two lads who are on infliximab and they're flying it now, so it is good. One of them I'd out drinking every weekend and it's hot affecting him at all.
I failed it though unfortunately. So I'm on rinvoq now and I'm actually on entyvio too. Getting my second infusion on Monday.
Anyways, bud, I hope entyvio works for you and you go into remission as soon as possible šš
currently flaring :,( off and on bleeding. Some days heavier than others. My poo isnāt as formed and ugh the nauseaaaaaaaa
Iām keeping up with my meds but they arenāt working all that much rn
Terrified that my daughter is having her first flare since diagnosis after her first trip. Iām so worried. All I can do is worry and be sad with every bathroom trip she takes. The dr told us to wait a week or two to see if she improves. Itās been 5 days with no improvement. Iām so scared.
Thank you for being there for your daughter. Iām sure she appreciates it more than youāll ever know.
I was diagnosed at 16 (32 now) and my mom would be by my side at every moment. She would insist on coming to every infusion appointment till I was 27 lol. I had to beg her not to cause i didnāt see why two people needed to be inconvenienced when itās really only mandatory for one.
Now that Iām married and moved out of the city she lives in, she still calls me daily to ask about my bowel movements lol. Moms are the biggest blessing on this earth.
When I visit her and end up flaring up, she still takes care of me like Iām 16 again. I try not to show her how bad it is most of the time cause I hate seeing her sad. And I know that seeing me in pain saddens and frustrates her. I feel guilty about it a lot. I wish she had a healthier daughter that could take care of her instead of having a 65 year old woman worry and take care of a 32 year old adult.
I am forever grateful.
Please donāt ever feel guilty. It would break your momās heart to hear you say that! Thank you for taking the time to write this message. My daughter is in her early teens and really wishes I would stop āobsessingā over her BMs - her exact words. I try hard to strike a balance so that she doesnāt get too annoyed by me fretting about her. Perhaps I will try even harder to hide how scared I am about her so that she never feels the guilt you feel. Iām so glad you appreciate your mom so much. Iām sure she is in awe of your strength and resilience.
Usually for me trips can definitely make me a bit unstable, but if Iām in remission it eventually goes away on its own! Hopefully itās the same for your daughter! Donāt worry too much! Wishing her and you the best!
I'm doing good! There is hope for those struggling currently. I can finally shop in IKEA without feeling the store is a maze to screw with people with UC lol! I have my bad days but most are good. I went through uears of hell and I finally feel good. Even putting on weight which I was okay with at first but now I may need a gym pass or some bigger pants hahaha.
Luckily for me I responded well to what tried first which was prednisone and ASA5's. While this helped with me bleeding my urgency was a huge issue for many years and greatly impacted my life. For the urgency it's been years of learning my new normal with my stomach dm what I can eat and can't and how much. I sort of know by my bowel movements what my inflammation is like and I eat accordingly. I have also learnt my more triggering foods and know I need to really limit those.
Cal protectin levels been the highest (500ish) since two years. Tried to combat my condition with diet only but guess it didnāt work. Back on Mesalsine and suppositories for now to get it back down and in remission. I had 73 calprotectin at one point so yeh trying to reach that. My diet has actually be immaculate but guess it wasnāt enough and seems like a mix of meds is needed, kinda of demotivating tbh
Iāve been in hospital for 10 days on IV steroids with no improvement so they are now going to operate either tomorrow or early next week. Was only diagnosed in Sept 2023 so my journey has been short but slightly more aggressive than others have it!
Glad to hear youāre in remission, continue to look after yourself and hope the rest of you feel as fit and well as possible very soon!! We got this ā¤ļø
No I think that was one of the next on the list but they said my chance of success is very low after spectacularly failing Infliximab, and with no response to IV steroids after this long Iād just be buying short amounts of time at best before the inevitable would be needed. Iāve heard generally good things about Rinvoq though!
Had an awful flare, vomited and over 3 days went to the toilet 30+ times a day.
It's like a curse, whenever the ibd doctor/nurse rings me and I say hey I'm on a good run of feeling normal!..well 3 times in a row I've had a flare 2 days after the callš
I miss food, I think judging by past flares that I should be normal (or close to) tomorrow.
May have to jump onto biologics next
Iām doing pretty good! I am on oral mesalamine as well as suppositories. I have been in remission for a good 6 years now on this medication. My dr thinks I should stay the course and is trying to help me find ways to get the medicine cheaper. Overall, the price is worth it to have a life that feels normal. I donāt know anyone in my personal life with this disease and felt really disconnected before I found this sub, I hope everyone is doing okay and if youāre not right now we are here for you
Oh gosh yeah every day! I take two tablets in the morning and one suppository each night. I spoke to my dr about it and told him I feel like I am on a lot of medication and he said we can try phasing out the suppository but that I should still take the pills every day. Iām on the fence about changing things since Iāve been doing so well.
Are you taking it orally or suppository when you take it once in a while? Iād love to only take it once a week!
This is where I get mine, [Homepage of Mark Cuban Cost Plus Drugs](https://costplusdrugs.com/) and I take 4 daily, so it's expensive. This is the cheapest option I've found for Mesalamine.
Not great. Somehow ended up getting multiple boils right outside my butthole. This is crazy!! The pain is unreal. Went to my regular doctor got ointment that isn't doing much. I might have to go to ER.
My doctor gave me an antibiotic ointment but wanted to hold off on oral antibiotics because I just had CDIFF in March from antibiotics and I don't want that again!!!!
A little stressed about medical fees, but my symptoms have been improving! Just got a diagnosis in the past month with severe inflammation from my colonoscopy, but the meds have been a godsend. No more blood, fewer and more formed stools, and the pain has been more mild too. Grateful for the improvements and hope they continue!
About to have my third dose of entyvio and Iām on my last week of prednisone taper, feel good so far but we will see soon if this is working. Itās my first biologic and my dr said if I have to get back on pred to get by I can. I still have some time so Iām trying not to stress it too much. Just hope I find something sooner rather than later
My blood test results came back and my doctor said I can move up my infusions from every 8 weeks to every 6!! I am so happy, I feel really lucky to have insurance willing to cover it because of my test results proving my need for it. I hope that this is the path that will put me into long term remission :) feeling grateful + hopeful
Doing pretty good taking budesonide along mesalamine and things looks good my calprotectin is 88 so good sign and I hope I can stay on budesonide forever but Iāll ask my doc.
Having a pretty bad flare. Havenāt been this bad in a while. I had little ones here and there but not one like this for years. First time itās actually painful to put pressure on my lower abdomen on the left side.
Doing mesalamine suppositories to try to get back into remission cuz thatās what I usually do.
I wish I could say good. I failed mesalamine and balsalazideā¦had my first infusion of Avsola last friday, been in a flare for 16 months. I hope the infusion starts to work soon. FC 2,000.
i feel like i was finally in remission and then 4 days ago i had an energy drink that i feel like is sending me into a flare. Now I am so stressed which is making the pain even worse and i just started a new job so i donāt want to fuck this up. iām just really hoping im not flaring again because i was severely depressed during my flare.
going on my fifth month of prednisone! makes me absolutely miserable mentally and physically but no uc symptoms for months. just got my second dose of entyvio so iām hopefully starting to taper soon to see if entyvio actually worked.
I am undergoing a bit of a flare rn. I have a colonoscopy in 2 weeks to determine whether or not Entyvio is doing anything after 24 weeks. Hoping for the best. A little anxious cause Iām starting school again this August and I really wanted my ducks in a row before then.
Lost insurance for awhile due to layoffs so I was unable to get remicade or mesalamine but finally getting back on track and feeling better. Pushed it a bit and had a gluten free beer at a friend's birthday last weekend so it set me back a bit but still making progress out of the flare! How are you?
Was in remission from inflectra but have been flaring since march... my april infusion did nothing.. did enemas for 2 months, which helped ok until I had colonoscopy month ago( pancolitis is now proctis only ) that resulted in complications and made me flare even worse, meantime I got a higher dose of inflectra bcs I'll be out of the country and was flaring which sorta helped but I continue to bleed despite being put on 2 weeks pred course cus insurance denied budesonide... I'm supposed to start getting my infusions every 6 weeks after my next 8 week one, so hopefully that will help my flare stop... my symptoms are almost gone except for 1-2 dots of blood every few days... I really wanna look for a new gi I only had few months of remission from inflectra until stress got to me and started flaring
Iām on prednisone right now and the side effects are killing mee, thankfully it is doing itās job now though and I barely have any UC symptoms but at what cost
Fine? Just learned i have ibd recently. Prednisone seems to be helping. But i have noticed my stools are now just completely undigested which is kinda freeky sometimes. Its like looking at green tea ice cream with assorted toppings lol.
Started rinvoq recently and Dk if itās working. Still in a 9 month flare but it has calmed down significantly. Am currently in berlin about to go out to a rave and see the Switzerland vs Italy euro game tomorrow. Still having like 8 bm a day and blood and mucus with cramps but fuck it gotta try an live still. Having a great holiday so far and only shat myself once
Hoping I don't get sick after being in a surgery center. Sometimes I think I have munchausen just with all the problems I have and shit. Other than that I'm currently in remission. 5 months āŗļøš
on my second dose of stelara and im doing a lot better! finally got a job after loosing my last one bc i couldnāt work w my symptoms. iām glad iām starting to get my life back.
Currently dying on the toiletā¦ itās been 2 yrs since I had a dunkin iced coffee and I figured āehh Iāve been super good and feeling great the last few weeks.ā Worst decision EVER! Iām in so much pain and think I bruised my ribs from the straining. NEVER AGAIN!
Awful last week or so but I know others have it much worse. Had a great time at my brother's wedding and paying for it (10 hours of drinking and a BBQ buffet is not UC safe but alas I haven't done "human" activities since my diagnosis so I needed it).
Sometimes you just gotta send it
I dooooooont blame you
Last time I did something like that it landed me in hospital for 5 weeks. Only got out yesterday š not sure if it was worth it lol
Yea hospital is the tipping point for sure lmao, unless it was like, someone's making a frat comedy movie about how crazy your Vegas trip was kinda of fun maybe
Finishing up my 4th month on Rinvoq and I feel fantastic. This is the longest I've been symptom free and also off of Prednisone since 2021. I can enjoy food again and can live my life. I'm ecstatic and hoping it's an actual full remission that lasts for a very long time like my last one did. š¤
Hi. Iām starting on Rinvoq next month after a successful 3 years on Xeljansz. Doc . Said he skips Xeljansz now and goes straight to Rinvoq. its only 1 pill a day so itās easier to take. Will start on 40mg. What dosage do you take?
I'm on the higher maintenance dose of 30mg. I started on 45mg. I haven't heard of 40mg being a dose for Rinvoq as the pills come in 45mg, 30mg, and 15mg tablets.
Ok I think youāre right 45mg doc said initially then cones down. But how long on the 45mg!? Btw that was a fast response.
Not so hot. Flaring for ever and nothing is working. First inflixumab infusion tomorrow. Keeping my fingers and toes crossed that this will be the one and I might stop shitting my bloody brains out
Wishing you the best with your infusion!
Thank you!! Iām trying not to be nervous, Iāve never had an infusion for a medication before. Iām sure itāll be fine but ya. Fingers crossed! My appointment is in a couple of hours
If it doesn't work ask if you can go on Rinvoq! It haled my symptoms in a week
They wanted me to start that, but my insurance is an asshole. I failed Hadlima, so now itās inflixumab, and I have to fail this and I think Entyvio before it will cover Rinvoq. I wish I could do that now!
Well I known two lads who are on infliximab and they're flying it now, so it is good. One of them I'd out drinking every weekend and it's hot affecting him at all. I failed it though unfortunately. So I'm on rinvoq now and I'm actually on entyvio too. Getting my second infusion on Monday. Anyways, bud, I hope entyvio works for you and you go into remission as soon as possible šš
Finally back on Mesalamine after years of begging. Only thing that has worked for me, so doing pretty good right now. Hope everyone is doing ok!
currently flaring :,( off and on bleeding. Some days heavier than others. My poo isnāt as formed and ugh the nauseaaaaaaaa Iām keeping up with my meds but they arenāt working all that much rn
Same here
Me tooā¹ļø
Give your tummy a hug for me ā¹ļø
Terrified that my daughter is having her first flare since diagnosis after her first trip. Iām so worried. All I can do is worry and be sad with every bathroom trip she takes. The dr told us to wait a week or two to see if she improves. Itās been 5 days with no improvement. Iām so scared.
Thank you for being there for your daughter. Iām sure she appreciates it more than youāll ever know. I was diagnosed at 16 (32 now) and my mom would be by my side at every moment. She would insist on coming to every infusion appointment till I was 27 lol. I had to beg her not to cause i didnāt see why two people needed to be inconvenienced when itās really only mandatory for one. Now that Iām married and moved out of the city she lives in, she still calls me daily to ask about my bowel movements lol. Moms are the biggest blessing on this earth. When I visit her and end up flaring up, she still takes care of me like Iām 16 again. I try not to show her how bad it is most of the time cause I hate seeing her sad. And I know that seeing me in pain saddens and frustrates her. I feel guilty about it a lot. I wish she had a healthier daughter that could take care of her instead of having a 65 year old woman worry and take care of a 32 year old adult. I am forever grateful.
Please donāt ever feel guilty. It would break your momās heart to hear you say that! Thank you for taking the time to write this message. My daughter is in her early teens and really wishes I would stop āobsessingā over her BMs - her exact words. I try hard to strike a balance so that she doesnāt get too annoyed by me fretting about her. Perhaps I will try even harder to hide how scared I am about her so that she never feels the guilt you feel. Iām so glad you appreciate your mom so much. Iām sure she is in awe of your strength and resilience.
Usually for me trips can definitely make me a bit unstable, but if Iām in remission it eventually goes away on its own! Hopefully itās the same for your daughter! Donāt worry too much! Wishing her and you the best!
Thanks for your encouraging words. And for your original post. Very happy to hear from people in remission.
I myself am not back in remission quite yet, but hopefully will get there soon with rinvoq. Fingers crossed!
Sorry, I got your username mixed up with OPās! Crossing my fingers for you.
I'm doing good! There is hope for those struggling currently. I can finally shop in IKEA without feeling the store is a maze to screw with people with UC lol! I have my bad days but most are good. I went through uears of hell and I finally feel good. Even putting on weight which I was okay with at first but now I may need a gym pass or some bigger pants hahaha.
ikea is an actual hellscape for us haha
Absolutely. I feel my anxiety rise the further into the store I go lol.
Noice! what made you feel good, like did you try another med or something?
Luckily for me I responded well to what tried first which was prednisone and ASA5's. While this helped with me bleeding my urgency was a huge issue for many years and greatly impacted my life. For the urgency it's been years of learning my new normal with my stomach dm what I can eat and can't and how much. I sort of know by my bowel movements what my inflammation is like and I eat accordingly. I have also learnt my more triggering foods and know I need to really limit those.
Cal protectin levels been the highest (500ish) since two years. Tried to combat my condition with diet only but guess it didnāt work. Back on Mesalsine and suppositories for now to get it back down and in remission. I had 73 calprotectin at one point so yeh trying to reach that. My diet has actually be immaculate but guess it wasnāt enough and seems like a mix of meds is needed, kinda of demotivating tbh
not good
Good. Routine scope on Monday. Not looking forward to the not eating all day Sunday but itās fine. Gotta do what we gotta do to stay well.
Remission just dealing with stubborn hemorrhoids dat bleed even tho im on hydrocortisone . But still in remission
Iāve been in hospital for 10 days on IV steroids with no improvement so they are now going to operate either tomorrow or early next week. Was only diagnosed in Sept 2023 so my journey has been short but slightly more aggressive than others have it! Glad to hear youāre in remission, continue to look after yourself and hope the rest of you feel as fit and well as possible very soon!! We got this ā¤ļø
Did they try rinvoq?
No I think that was one of the next on the list but they said my chance of success is very low after spectacularly failing Infliximab, and with no response to IV steroids after this long Iād just be buying short amounts of time at best before the inevitable would be needed. Iāve heard generally good things about Rinvoq though!
Good luck with whatever you decide for. I also have to get a bit comfortable with the option of surgery.
ā„ļø
Currently flaring and my current meds stopped working but my colonoscopy is at the end of July so we wait and sufferā¦
Had an awful flare, vomited and over 3 days went to the toilet 30+ times a day. It's like a curse, whenever the ibd doctor/nurse rings me and I say hey I'm on a good run of feeling normal!..well 3 times in a row I've had a flare 2 days after the callš I miss food, I think judging by past flares that I should be normal (or close to) tomorrow. May have to jump onto biologics next
Iām doing pretty good! I am on oral mesalamine as well as suppositories. I have been in remission for a good 6 years now on this medication. My dr thinks I should stay the course and is trying to help me find ways to get the medicine cheaper. Overall, the price is worth it to have a life that feels normal. I donāt know anyone in my personal life with this disease and felt really disconnected before I found this sub, I hope everyone is doing okay and if youāre not right now we are here for you
How often do you use mesalamine for? I assume daily? My doctor said I can use it periodically like 1 time a week or everyday. How often do you use it?
Oh gosh yeah every day! I take two tablets in the morning and one suppository each night. I spoke to my dr about it and told him I feel like I am on a lot of medication and he said we can try phasing out the suppository but that I should still take the pills every day. Iām on the fence about changing things since Iāve been doing so well. Are you taking it orally or suppository when you take it once in a while? Iād love to only take it once a week!
Only suppository, and Iāve been off all medication for approx 1 month now. If it flares will take the suppository and only then
This is where I get mine, [Homepage of Mark Cuban Cost Plus Drugs](https://costplusdrugs.com/) and I take 4 daily, so it's expensive. This is the cheapest option I've found for Mesalamine.
Not great. Somehow ended up getting multiple boils right outside my butthole. This is crazy!! The pain is unreal. Went to my regular doctor got ointment that isn't doing much. I might have to go to ER.
Go to ER. If severe, the boils may need to be drained and require antibiotics
My doctor gave me an antibiotic ointment but wanted to hold off on oral antibiotics because I just had CDIFF in March from antibiotics and I don't want that again!!!!
A little stressed about medical fees, but my symptoms have been improving! Just got a diagnosis in the past month with severe inflammation from my colonoscopy, but the meds have been a godsend. No more blood, fewer and more formed stools, and the pain has been more mild too. Grateful for the improvements and hope they continue!
About to have my third dose of entyvio and Iām on my last week of prednisone taper, feel good so far but we will see soon if this is working. Itās my first biologic and my dr said if I have to get back on pred to get by I can. I still have some time so Iām trying not to stress it too much. Just hope I find something sooner rather than later
My blood test results came back and my doctor said I can move up my infusions from every 8 weeks to every 6!! I am so happy, I feel really lucky to have insurance willing to cover it because of my test results proving my need for it. I hope that this is the path that will put me into long term remission :) feeling grateful + hopeful
Doing pretty good taking budesonide along mesalamine and things looks good my calprotectin is 88 so good sign and I hope I can stay on budesonide forever but Iāll ask my doc.
Having a pretty bad flare. Havenāt been this bad in a while. I had little ones here and there but not one like this for years. First time itās actually painful to put pressure on my lower abdomen on the left side. Doing mesalamine suppositories to try to get back into remission cuz thatās what I usually do.
Aza sent me back to my ex (medrol) started 2 days ago.
I wish I could say good. I failed mesalamine and balsalazideā¦had my first infusion of Avsola last friday, been in a flare for 16 months. I hope the infusion starts to work soon. FC 2,000.
Having the worst flare up Iāve ever had since first being diagnosed
currently flaring and honestly today was a rough day. i cried all day itās been so rough š
i feel like i was finally in remission and then 4 days ago i had an energy drink that i feel like is sending me into a flare. Now I am so stressed which is making the pain even worse and i just started a new job so i donāt want to fuck this up. iām just really hoping im not flaring again because i was severely depressed during my flare.
going on my fifth month of prednisone! makes me absolutely miserable mentally and physically but no uc symptoms for months. just got my second dose of entyvio so iām hopefully starting to taper soon to see if entyvio actually worked.
I am undergoing a bit of a flare rn. I have a colonoscopy in 2 weeks to determine whether or not Entyvio is doing anything after 24 weeks. Hoping for the best. A little anxious cause Iām starting school again this August and I really wanted my ducks in a row before then.
Lost insurance for awhile due to layoffs so I was unable to get remicade or mesalamine but finally getting back on track and feeling better. Pushed it a bit and had a gluten free beer at a friend's birthday last weekend so it set me back a bit but still making progress out of the flare! How are you?
Was in remission from inflectra but have been flaring since march... my april infusion did nothing.. did enemas for 2 months, which helped ok until I had colonoscopy month ago( pancolitis is now proctis only ) that resulted in complications and made me flare even worse, meantime I got a higher dose of inflectra bcs I'll be out of the country and was flaring which sorta helped but I continue to bleed despite being put on 2 weeks pred course cus insurance denied budesonide... I'm supposed to start getting my infusions every 6 weeks after my next 8 week one, so hopefully that will help my flare stop... my symptoms are almost gone except for 1-2 dots of blood every few days... I really wanna look for a new gi I only had few months of remission from inflectra until stress got to me and started flaring
Things could be better. My entyvio infusion interval has recently been increased from 8 weeks to 4 weeks.
Currently experiencing a flare up (my second one this year) š„²
me too š„² prednisone was a short term fix for my january flare, but it started again in may. solidarity!!
I got put of hospital after 5 weeks yesterday. Still not 100%, but I'm much better than I was. Onwards and upwards from here I hope š
Iām on prednisone right now and the side effects are killing mee, thankfully it is doing itās job now though and I barely have any UC symptoms but at what cost
right now in remission except for bloating and terrible smelling gas
Fine? Just learned i have ibd recently. Prednisone seems to be helping. But i have noticed my stools are now just completely undigested which is kinda freeky sometimes. Its like looking at green tea ice cream with assorted toppings lol.
Great! On a steroid taper feeling good about to start Stelara in the next month or so. Also I'm 7 months pregnant with my first baby, a boy!
Better but not 100 yet
Started rinvoq recently and Dk if itās working. Still in a 9 month flare but it has calmed down significantly. Am currently in berlin about to go out to a rave and see the Switzerland vs Italy euro game tomorrow. Still having like 8 bm a day and blood and mucus with cramps but fuck it gotta try an live still. Having a great holiday so far and only shat myself once
Avsola infusion seems to be working
Hoping I don't get sick after being in a surgery center. Sometimes I think I have munchausen just with all the problems I have and shit. Other than that I'm currently in remission. 5 months āŗļøš
on my second dose of stelara and im doing a lot better! finally got a job after loosing my last one bc i couldnāt work w my symptoms. iām glad iām starting to get my life back.
Currently dying on the toiletā¦ itās been 2 yrs since I had a dunkin iced coffee and I figured āehh Iāve been super good and feeling great the last few weeks.ā Worst decision EVER! Iām in so much pain and think I bruised my ribs from the straining. NEVER AGAIN!