Hello! I was diagnosed sometime around 2012 and went through some terrible times in the beginning, basically spent a solid 1-2 years chained to my home, except the days I spent in the hospital. Went through all the standard meds/steroids, Those first few years were a really dark time in my life, NOTHING helped....until I started entyvio around 2014 and things started looking up. Sometime along the way I was in full remission and things were great for years...in the back corners of my mind I almost started doubting I ever even had UC, kind of amazing the tricks your mind tries to play on you sometimes. Of course, I never stopped taking Entyvio.....I was doing it once a month, every single month, till today.
I had a terrible terrible infection in January this year and was forced to take antibiotics...about a month after I finished them I started getting some familiar symptoms - I don't know for sure if the antibiotics caused them to come back, but I don't know that they didn't either. Even though my UC never really completely went away - I still went to the bathroom more often then a normal person should despite the clean scopes - the urgency was always controllable. VERY rarely did I feel like I need the bathroom NOW, and even when I did...I could hold it. I could fart pretty confidently....I lived a pretty normal life.
Those familiar symptoms started getting progressively worse, I can't fart anymore unless I lay on my side now, otherwise mucus comes out. BMs are getting smaller and less satisfying and usually mucusy, more effort is required for less output, very similar to how it all started. I scheduled a scope with my dr and turns out the inflammation is back, severe inflammation all the way up to the descending colon.
We're stopping Entyvio, starting steroids to try to keep things under control short term - and after some blood work results, the plan is to start Rinvoq.
My heart is broken... My kids are a little bit older then before, I have more of them, we spend a lot of time together doing things outside, I have a more satisfying job now but with more responsibility. I really don't want to go back to those darker days.
I'm trying to keep my hopes up but I'm kind of freaking out, I know that trying any med is just rolling the dice....first it has to work (and only Entyvio did for me after many others did nothing), then the side effects have to be not worse than the disease, then it has to last more than a few weeks/months.
I remember you! Sorry you are back here now. I am in the same spot as you. Was gone for years doing ok and now am in a horrible flare and just started Rinvoq. I hope it works for you. I think your family will be supportive and helpful. They love you and don’t want you to suffer. They want you to be healthy again.
Joanna, 33 yrs old and living in Pennsylvania
Started Simponi in Dec 2013 but may be starting Rinvoq since I’m in a flare as of Feb 2023.
I only respond to IV pred, nicotine and biologics so none of the 5 asa’s or immunosuppressants gave me any longterm benefit
Diagnosed at age 16 with proctitis and developed into several pancolitis with IC valve erosion
formerly known as bananagirl
Joanna, 33 yrs old and living in Pennsylvania
Started Simponi in Dec 2013 but may be starting Rinvoq since I’m in a flare as of Feb 2023.
I only respond to IV pred, nicotine and biologics so none of the 5 asa’s or immunosuppressants gave me any longterm benefit
Diagnosed at age 16 with proctitis and developed into several pancolitis with IC valve erosion
formerly known as bananagirl
Sorry youre back!
I think that even in remission the fear is always at the back of our minds that a flare is hiding around the corner.
Please keep us updated on your progress with rinvoq. We’re all watching to see how this newer med works. I was at my GIs the other day and the walls are pretty thin so I could hear him next door telling the patient he was going to start him on rinvoq. It must be the new “IT” drug.
UC pancolitis DX March 2016,
Partial Colectomy for diverticulitis Sept 2014
Discontinued as of January 2020: Apriso. Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Aimovig monthly injections for migraines.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
I think that even in remission the fear is always at the back of our minds that a flare is hiding around the corner.
Please keep us updated on your progress with rinvoq. We’re all watching to see how this newer med works. I was at my GIs the other day and the walls are pretty thin so I could hear him next door telling the patient he was going to start him on rinvoq. It must be the new “IT” drug.
UC pancolitis DX March 2016,
Partial Colectomy for diverticulitis Sept 2014
Discontinued as of January 2020: Apriso. Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Aimovig monthly injections for migraines.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
Sorry to hear about your flare. Rinvoq seems like a very effective medicine so fingers crossed it will work for you. I've had good luck so far with Xeljanz when nothing else was working for me.
39 yrs old; dxd UC March '07. Current meds: Started Xeljanz 6/15/21 - finally off steroids & in remission!; Delzicol. Calcium & Vit. D & K2; Multi w/iron. Past: Remicade (worked for only 9 wks); Imuran (horrible s/e); Humira, Entyvio & Stelara didn't work; Uceris; prednisone; Tramadol for flare pain; Rowasa enemas
39 yrs old; dxd UC March '07. Current meds: Started Xeljanz 6/15/21 - finally off steroids & in remission!; Delzicol. Calcium & Vit. D & K2; Multi w/iron. Past: Remicade (worked for only 9 wks); Imuran (horrible s/e); Humira, Entyvio & Stelara didn't work; Uceris; prednisone; Tramadol for flare pain; Rowasa enemas
Sorry to hear about the relapse. I know personally how frustrating that is. I will say that you should not be too discouraged because there are so many options for you to move to. And perhaps you could get into an even better state to remission with different drugs. I will say that I have some incredible success on Rinvoq and it is incredibly fast to work. I wish you the best of luck.
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade
Started Xeljanz 9/19
Lost response in 3/21
Currently trying Stelera/5/21
On dual therapy. Stlelera and Rinvoq
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade
Started Xeljanz 9/19
Lost response in 3/21
Currently trying Stelera/5/21
On dual therapy. Stlelera and Rinvoq
Thank you all for the support an encouragement!
Wow bacon girl sorry to hear that you're back as well! I remember you as Banana Girl lol. Those are almost 2 exactly opposite things! Or can you do a bacon wrapped banana....I haven't tried that.
How is Rinvoq coming along for you?
I will say the one thing that kept me somewhat sane while I was flaring really badly is these forums. People feel bad and try to help, and close family obviously also suffers tremendously. But unless you're going through it yourself you can't REALLY understand how crushing this disease can feel...it gets to feeling kind of lonely even with everybody trying to help.
I did my bloodwork today, so hoping to start Rinvoq next week, I think. We'll see how that goes, trying to keep my hopes up. I'll post updates on how that's going.
Wow bacon girl sorry to hear that you're back as well! I remember you as Banana Girl lol. Those are almost 2 exactly opposite things! Or can you do a bacon wrapped banana....I haven't tried that.
How is Rinvoq coming along for you? I will say the one thing that kept me somewhat sane while I was flaring really badly is these forums. People feel bad and try to help, and close family obviously also suffers tremendously. But unless you're going through it yourself you can't REALLY understand how crushing this disease can feel...it gets to feeling kind of lonely even with everybody trying to help.
I did my bloodwork today, so hoping to start Rinvoq next week, I think. We'll see how that goes, trying to keep my hopes up. I'll post updates on how that's going.
Hello UCHater. I think I remember you from many years ago posting here. I'm back too, unfortunately.
As much as I hate flaring, it is beautiful to see the community rally and support each other here. It is truly heart-warming.
Your flareups start very similarly to mine. Esp with the mucous and not being able to pass gas.
I hope the new med brings you many many years of remission. Hopefully forever!
36 yo female
UC pancolitis dx April 2011 ~1 month after birth of my first child.
Tried countless natural therapies inc FMTs. Everything works for a while, until it doesn't. Longest remission was for 3 years after the FMTs. Currently on Entyvio however losing response to it after the 11th infusion (18 months).
As much as I hate flaring, it is beautiful to see the community rally and support each other here. It is truly heart-warming.
Your flareups start very similarly to mine. Esp with the mucous and not being able to pass gas.
I hope the new med brings you many many years of remission. Hopefully forever!
36 yo female
UC pancolitis dx April 2011 ~1 month after birth of my first child.
Tried countless natural therapies inc FMTs. Everything works for a while, until it doesn't. Longest remission was for 3 years after the FMTs. Currently on Entyvio however losing response to it after the 11th infusion (18 months).
Post Edited (Conquer UC) : 4/13/2023 3:57:28 AM (GMT-8)
I remember you as well conquer…so many familiar faces. Pretty sad that we’re all still here or here again.
I was on here almost 24/7 while flaring badly and tried to completely avoid coming on while in remission because I don’t like to be reminded of the suffering. I wasn’t even sure if my account was still valid. It’s a life saving resource though.
I was on here almost 24/7 while flaring badly and tried to completely avoid coming on while in remission because I don’t like to be reminded of the suffering. I wasn’t even sure if my account was still valid. It’s a life saving resource though.
Hang in there UCHater. I'm also really grateful for this forum. I know everyone's experience is different, but we understand in ways friends and family cannot. I know EXACTLY what you mean about the fart, "can't fart anymore unless I lay on my side now, otherwise mucus comes out."
I was in remission on Entyvio for about 1.5 - 2 years then it stopped working for me and I had to switch to Xeljanz. Felt better within in days. Found my post with my 1 week Xeljanz update. Was able to fart on Day 7!
I hope Rinvoq does right by you!
One Week update on Xeljanz:
Things are going well so far. Certainly not normal (it's only been a week), but I'm definitely seeing improvements.
First of all, no observable side effects so far.
Improvements
1. No blood since day 3 or 4.
2. Pooped on day 6. Urgently, but pooped! Diarrhea improving.
3. Day 7 I farted. i.e. passed air and ONLY air.
30 F diagnosed 2008 with Chronic (mild/moderate) UC
Current Meds: Xeljanz (May 2022),
Past Meds: Lialda (forever), Entyvio (Feb 2019 - April 2022). Remicade - responded for 5 days, then nothing
I was in remission on Entyvio for about 1.5 - 2 years then it stopped working for me and I had to switch to Xeljanz. Felt better within in days. Found my post with my 1 week Xeljanz update. Was able to fart on Day 7!
I hope Rinvoq does right by you!
One Week update on Xeljanz:
Things are going well so far. Certainly not normal (it's only been a week), but I'm definitely seeing improvements.
First of all, no observable side effects so far.
Improvements
1. No blood since day 3 or 4.
2. Pooped on day 6. Urgently, but pooped! Diarrhea improving.
3. Day 7 I farted. i.e. passed air and ONLY air.
30 F diagnosed 2008 with Chronic (mild/moderate) UC
Current Meds: Xeljanz (May 2022),
Past Meds: Lialda (forever), Entyvio (Feb 2019 - April 2022). Remicade - responded for 5 days, then nothing
Hah! Where else can we celebrate only air farts!! 🤣🤣🤣
General public and even friends and family can never REALLY understand the joy!
UC pancolitis DX March 2016,
Partial Colectomy for diverticulitis Sept 2014
Discontinued as of January 2020: Apriso. Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Aimovig monthly injections for migraines.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
General public and even friends and family can never REALLY understand the joy!
UC pancolitis DX March 2016,
Partial Colectomy for diverticulitis Sept 2014
Discontinued as of January 2020: Apriso. Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Aimovig monthly injections for migraines.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
Ha yea it really is an under appreciated skill.
I feel like air farts are such a major milestone, I feel pretty good about myself when I can do it…while I was in remission I would happily fart and my wife would get annoyed, but I’d keep telling her you have no idea how happy I am with that accomplishment lol.
I feel like air farts are such a major milestone, I feel pretty good about myself when I can do it…while I was in remission I would happily fart and my wife would get annoyed, but I’d keep telling her you have no idea how happy I am with that accomplishment lol.
I think I started a post about the ability to fart freely one time ... non-IBD people cannot understand the joy LOL
64 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
64 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
So finally talked to the doctor. Looks like we’re definitely starting rinvoq and just waiting for insurance approval. He said I need to get the shingles vaccine, which kind of freaks me out going by what Bacon Girl is currently experiencing. He did mention there is no evidence that the vaccine causes flare ups and he basically insists I get it, hopefully I don’t regret it…
I don’t know why he would insist you get it now. Why don’t you get your flare under control and then get it? It’s not a live vaccine so doesn’t necessarily need to be done before starting a biologic/immune suppressor. And it should be your choice if you get a vaccine or not
UC pancolitis DX March 2016,
Partial Colectomy for diverticulitis Sept 2014
Discontinued as of January 2020: Apriso. Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Aimovig monthly injections for migraines.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
UC pancolitis DX March 2016,
Partial Colectomy for diverticulitis Sept 2014
Discontinued as of January 2020: Apriso. Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Aimovig monthly injections for migraines.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
Yea I’m just going to wait….I’ll see how I do over the next few weeks first then get the vaccine assuming rinvoq is showing promising results.
I’m sure (hopefully) I won’t get shingles immediately after starting rinvoq 😁
He said we do a higher dose of 45mg for the first 3 months, then we lower to 15mg and adjust as needed from there.
I’m sure (hopefully) I won’t get shingles immediately after starting rinvoq 😁
He said we do a higher dose of 45mg for the first 3 months, then we lower to 15mg and adjust as needed from there.
The older shingles vaccine was a live vax. I got that one before I went on Entyvio. Shringix isn't live and I just had that one last year while on Remi on advice of my PCP. Your doc may not realize that Shingrix isn't live like the older one was.
64 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
64 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
I've been on xeljanz for 4 years and not had a shingrix vaccine. There is an increased risk of shingles on xeljanz and rinvoq but you'd be pretty unlucky to catch it in the first few weeks.
Ps if you take an immunosuppressant you may mount a lower immune response to ANY vaccine, regardless if it is live or otherwise. That is why it may be beneficial to get the vaccine before starting the drug. But then you'd also have to wait a few weeks to build said immune response and if you're flaring badly that may not be an option.
UCHater said...
So finally talked to the doctor. Looks like we’re definitely starting rinvoq and just waiting for insurance approval. He said I need to get the shingles vaccine, which kind of freaks me out going by what Bacon Girl is currently experiencing. He did mention there is no evidence that the vaccine causes flare ups and he basically insists I get it, hopefully I don’t regret it…
I agree with your doctor. I had zero side effects from the shingles vaccine and have never heard of what Bacon Girl described happening to anyone else, ever. I don't think it's a big deal if you want to wait a month or so though. My doctor didn't make me get the vaccine and I'm on Xeljanz.
39 yrs old; dxd UC March '07. Current meds: Started Xeljanz 6/15/21 - finally off steroids & in remission!; Delzicol. Calcium & Vit. D & K2; Multi w/iron. Past: Remicade (worked for only 9 wks); Imuran (horrible s/e); Humira, Entyvio & Stelara didn't work; Uceris; prednisone; Tramadol for flare pain; Rowasa enemas
Post Edited (Sara14) : 4/21/2023 5:23:14 PM (GMT-8)
poopydoop said...
Ps if you take an immunosuppressant you may mount a lower immune response to ANY vaccine, regardless if it is live or otherwise. That is why it may be beneficial to get the vaccine before starting the drug. But then you'd also have to wait a few weeks to build said immune response and if you're flaring badly that may not be an option.
This is true but he's on prednisone anyway so that timing probably wouldn't really matter.
39 yrs old; dxd UC March '07. Current meds: Started Xeljanz 6/15/21 - finally off steroids & in remission!; Delzicol. Calcium & Vit. D & K2; Multi w/iron. Past: Remicade (worked for only 9 wks); Imuran (horrible s/e); Humira, Entyvio & Stelara didn't work; Uceris; prednisone; Tramadol for flare pain; Rowasa enemas