I have many of the same issues and also have disease that presents with constipation. There’s an amazing product called Fissure Control Oil that I discovered about a year ago - between that and...
Thanks, iPoop - USA / New England. I did check on the FDA’s drug shortage site today and it’s not listed - but it wasn’t last year, either. We’re going to try to get it from CVS. FYI, Canada’s site...
I’m dealing with the start of a flare (I think) and would like to ask my GI to prescribe Cortifoam again, but couldn’t find it ANYWHERE (and believe me, I looked) six months ago. Is anyone able to...
Hugo, I was just perusing the forum (which I do whenever I start feeling lousy) and saw your post. I think you and i were diagnosed and put on Remicade at roughly the same time in 2017? I seem to...
My Calprotectin has been sky-high too - >2000, over the reporting threshold, during a bad flare (and I wasn’t hospitalized at the time). So - it is scary to see the number but as my GI reminds me,...
The other question is where is your bruising? If it’s showing up primarily on shins/ankles and is preceded by a bump or what appears to be a rash in that area, it may be erythema nodosum, which is an...
Thanks, @decaf4me and @the_swan! Great suggestions. My GI offered me the option of adding azathioprine or 6mp when I was struggling on Remicade, and in retrospect, I wish we'd tried adding it. He has...
Those of you who have seen my posts probably know that I've been struggling for awhile. My UC, while not severe, has not responded super well to medication. We've tried (in order): Prednisone -...
So, quick update: I spoke with the surgeon (Richard Hoden, for those of you in New England) on Monday. He is a colorectal surgeon at Mass General and apparently does quite a lot of UC and Crohn's...
This study was related to collagenous colitis, but patients were treated with budesonide for 12 months without issues: https://gut.bmj.com/content/65/1/47 I found this only because I started Uceris...
Awesome - thanks for responding!...
Thanks to both of you! So it started getting easier to use last night. It’s still noticeable and uncomfortable but not outright pain, which is an improvement. @naturalcurl - can you please confirm if...
I’ve just started Uceris foam, and while I have used all kinds of rectal meds, I’m a little stressed about this one. When I depress the canister and then release it, I don’t know if it’s the gas or...
Thank you to everyone who took the time to respond! It’s been one of those weeks - infusion wiped me out, struggling a bit with the addition of Uceris foam, arguing with health insurance...ya know,...
I had great luck with Remicade, which was my first biologic, and have found Entyvio to be a little more challenging (but not much) - just feel a little wiped out after infusions is all. Remicade was...
@colitisresearch, thank you! The surgeon I’m talking to is Richard Hodin at Mass General in Boston, and he seems to have a lot of experience doing these surgeries, though I will ask. How long did it...
I can’t believe I’m only two years post-diagnosis and considering surgery already, but here we are. I’m still flaring despite increasing Entyvio to every 4 weeks. It’s probably a mild flare by most...
Hello! 1) Has anyone been able to order Cortifoam recently? Still can’t find it here. 2) I’m on Entyvio (month 7, infusions every 4 wks) and still in a mild flare. We are going to try adding a foam...
Yes! My GI said they are liking Stelara more and more, even off label for UC patients....
Agree. Interesting: I met with my GI last week and he said he’s hesitant to use Xeljanz for longer than six months at a time in younger patients. This is based on observations of their patient...
For those on the 2x 10mg dose: https://www.medscape.com/viewarticle/909551 Note: they *are* saying this relates to RA patients on the UC induction dose, but it’s unclear whether the increased risk of...
That is good to hear! Hang in there :)...
Hello! I’ve had similar elevations and underwent several tests, including a liver biopsy, to rule out autoimmune hepatitis, etc. My GI has seen patients with elevated LFTs while on TNF blockers...
@poopydoop, yes to Xeljanz - that’s our next step. GI says he’d like to see me next week, so we’ll see what happens. They’ve also had good results with off-label Stelara. I think I am going to ask...
Poopydoop, you could have written this post for me, almost word for word. I just emailed my GI today - 7 infusions in with Entyvio and still having blood/mucus, 1-3 solid stools per day, and urgency...
Thank you, @poopydoop! All of that is helpful. Can you please share whether Xeljanz has worked for you? I've been considering surgery since I failed Remicade, but it's the time off for recovery that...
Thank you! That’s the weird thing about it - some things are improving (bleeding is less, not passing blood alone anymore, less tenesmus), but the diarrhea has gotten progressively worse after the...
Advice, please? I’ve been on Entyvio since August 8. I did my normal loading doses, then the first regular infusion at 8 weeks. They bumped the next one to 6 weeks when I wasn’t improving, and then...
Have you tried foods with chips besides ice cream? Dairy is a trigger for some of us (or many, depending on the GI you ask) and carrageenan is a thickener that can cause major problems for me. There...
Also, my GI and I just discussed this, as I'm about to have dental work done and may need an antibiotic if there's any sign of infection. My GI said specifically to avoid clindamycin, for what it's...
Carrageenan is a HUGE problem for me. I used to roll my eyes at people who said to avoid it, but found the same thing after keeping a careful food and symptom diary - I start cramping and bleeding...
Meh. I see where you're coming from, and I often ask the same questions. For example: - No real response to prednisone; I kept bleeding and having symptoms - Mesalamine (enemas and colazal) - UC...
I'm on Entyvio due to failing Remicade as well, but my GI and I had a good discussion about Xeljanz recently. the IBD center at Mass General (Boston) has several patients doing well on it, and he's...
Welp, I'm going to be the lone soda fan here and tell you that I LOVE caffeine-free coke, and drink it regularly. Zero issues and in fact it settles my stomach very quickly if I'm dealing with nausea...
Takeda IS working on a home-injection version of Entyvio (yay!): https://www.centerforbiosimilars.com/news/takeda-announces-collaboration-on-needlefree-biologics-delivery And yes, those darn...
Just saw this and wanted to respond. I’ve been on tacrolimus suppositories on and off since late April. They have been FANTASTIC when Remicade was not getting the job done. I only had a partial...
So fun times, as I’ve shared here previously I had a “secondary loss of response” to Remicade. GI ordered Entyvio, but today I found out that the insurance company is requiring me to fail Humira...
Good luck, UCfireman! I am currently fighting with insurance to get Entyvio approved (I’ve failed remicade as a primary non-responder, but they also want me to fail Humira first, how nice of them :/)...
I also have UC that presents with constipation, even when my inflammation was right up the left side - patterns of constipation/urgency and bleeding. And sometimes the constipation can be a cyclical...
Hey, has anyone been able to find Cortifoam again? Tacrolimus supps have been a bit of a pain (literally) and causing some unpleasant GI side effects. I’d like to see if I can get back on cortifoam...
We are incredibly fortunate to have 2.5 baths for two of us (and four cats). My husband is one of those perfectly regular people who LOVES "a good poop" - and thankfully has a great sense of humor...
Sara - it's a pill, taken twice daily (UC patients are not eligible for the extended release version of Xeljanz, I would guess because of the risk of GI bleeding/perforation). Countess - You cannot...
Thanks, Hugo! I did get a good few months' remission once I increased my infusions to every 4 weeks, but then hit a flare in February and have been up and down ever since. Tacrolimus suppositories...
@IntestinalWasps, Limey and FlowersGal - THANK YOU! Your responses did a lot to help me calm down about this med change. You'd think after the past 18 months I'd be used to all of this, but...fingers...
I had major joint pain after my 2nd and 3rd remicade infusions, but was also coming off Pred at the same time - the pred withdrawal seemed to be the issue. I finally got off the pred, had some...
That is wonderful to hear, NSSG! Thank you for sharing. @tired: best of luck and thinking of you! Keep us all posted and I will do same....
Thanks again to this awesome group - you have all been so helpful and supportive over my past 18 months with UC! So despite a round of tacrolimus suppositories (which DO help me, far more than...
I've been looking at drug options since I'm still showing disappointingly high calprotectin scores. We're going to do one more test before discussing a treatment change. I've seen some conflicting...
Thanks for sharing this, Angela! I understand everything you've said - my disease should have responded to steroids but didn't, should have responded to mesalamines (but I was intolerant), should...