I had a colonoscopy yesterday and biopsy results came back as, chronic quiescent colitis and no dysplasia. GI saw NO visible inflammation during scope. This sounds like remission to me. However......
I had a nasty pancolitis flare about 15 months ago. It can take a while for the meds you mentioned to kick in. I ended up having to move to weekly Humira after about 9 months on the typical UC dose....
I switched to weekly Humira about 6 weeks ago after 6 months at twice/month dose. My switch was due to some nagging left sided pain following a scope in the only area that had remaining inflammation....
@Mak - who and where was your surgeon? I'm looking for one with experience in both UC and malrotation for a second opinion. Hope all is well! Thx!...
I was diagnosed with malrotation at 41 by CT. I never had any abdominal issues until being diagnosed with Ulcerative Colitis at 34. Curious if anyone has the name of a surgeon in the US with...
I’ve got the congenital defect version of malrotation..all kinds of stuff in the wrong place. 😳 Not urgent at the moment, but an interesting new piece of the puzzle...
I have 7 years worth of scope biopsies that clearly confirm the UC diagnosis. I’m not looking for a new diagnosis here, just looking for input from other UCers that may have had the malrotation...
I’ve had some ongoing left sided pain after recent scope. GI sent me to ER for CT scan last night to rule out perf and couple other things. Determined pain is just UC related from one spot left with...
Suchatravesty...I never used to retain it, but seem to a bit now. I hear you on dropping the prednisone weight. Working on that now!...
I’ve been on it for about 6 months. I do have a 4-5 pound fluctuation in weight every day or two that doc thinks may be attributed to a Humira. BUT...as I’m able to get back to more intense workouts,...
Usually 2x/day, sometimes 2-3...but still have some lingering inflammation. I’m probably about 80% back to normal. Work every day, getting to kids stuff...we have 4 playing sports right now, and even...
Glad to hear you’re doing better!...
Thanks CGK. I’ll cerainly see the biopsy report when it’s back. I guess the bright side is most of it is returning to normal! This has been a brutal one to climb out of!...
Hey all - had my first follow up scope after sev pancolitis flare in Sept. I still have 20cm of moderate inflammation, mostly around splenic fixture. So disappointed - I have the pics, and it looks...
Great news! I’m happy for you!!...
There is lots of good advice above, here are a few other tips from my own personal experience. Pancolitis is serious and I’d echo the others comments to hit it hard fast. Prednisone is a great rescue...
Thx for all the input! Based on the miserable side effect from one dose, docs punted to plan B. Loading up on iron rich foods and sticking with multivitamin and no supplement for now. Monitor with...
Hi all! Any recommendations for Iron (325 ferrous sulfate) w/ Vit C that are “easy” or perhaps tolerable on our guts? I have mild anemia and GI told me to start supplementing. I’ve had to...
Glad to hear you're doing well!...
I’ve been on Humira / Imuran combo for about 3 months, so far so good! Like many have posted, it can take a while to find the right combo of meds. And that combo can change over time. Most of us are...
Great news! Will be thinking about you!...
How long have you been at 5mg? I had mild symptoms start when I got to 5. Had success staying at 5 longer, then every other day for last couple weeks before stopping. I think it was about 5 weeks...
Glad things are going well!...
Curious if anyone has insight into prednisone withdrawal. I was on pred for about 4.5 months, with a really slow taper. Two weeks after stopping, joint pain started. It's unlike any UC related joint...
Nioxin #2 stopped the Imuran hair loss for me. I was at a higher dose several years ago and lost about 1/3 of my hair. I tried Nioxin as a desperation move and it stopped it. Hang in there and good...
I’ve had them occasionally over the years. When mild, small bones in hands and feet. When more severe, had both elbows, one hip, both knees, hands and feet. It’s a constant ache that has me dreaming...
Great news on you remission!...
For me, each flare and resulting prednisone taper has been a bit different. My GI normally has me drop by 5 a week and monitor symptoms closely. This time, we did a lot of tweaking based on what was...
More and more Gi’s Are taking a top down approach and starting with biologics. In my experience, my GI combines meds to achieve remission, then starts slowly reducing doses of some to ultimately work...
I remember my WBC hung out around 3.5 for a couple years the first time I was on Imuran. GI watched it but never was concerned about it.....
Good luck with Entyvio, Spring! That one was my GI’s first choice too! Hope it works well for ya....
I use Accredo too. It’s a bit of an adventure getting it set up. Follow up was key in my experience. Hand in there, Spring. I have 4 kids 7-17...the Humira really hasn’t kept me down too much....
Humira users...past or present I started Humira 7 weeks ago. GI symptoms seem to be trending toward “stable” and I’m nearly done with a super slow pred taper. Great news! BUT - after last injection,...
Spring - I started Humira about 7 weeks ago after insurance denied Entyvio. Here are a few tips that might help streamline things for you as you get setup. 1) The pharmacy may ask you to confirm...
I started Humira about 7 weeks ago after a horrific flare. So far so good. Be diligent about hand washing, door handles, use hand sanitizer after standing at the pharmacy counter, etc. Other than...
Bleeding has always been sign of a flare for me. My flare progression is less common, and if inflammation is limited to the first few inches, bleeding is only symptom for me. In addition to other...
I do the Dulcolax/Miralax/Gatorade prep. I think white cherry Gatorade is the best to mix it with....
Countess..I hope the med change is the answer for you! Agree with the others and would add this perspective. I have a great GI...and I totally freaked out on the poor guy when he told me it was time...
Countess, you can choose pen or syringe, just need to let your doc know. I have the pen and didn’t think it was so bad! Good luck!...
Need to let your Gi know symptoms have come back. UC requires maintenance meds. Sounds like yours might need some tweaking from your doc....
I had a mild flare earlier this year and tried to stick with just Lialda/Rowasa instead of moving to a biologic or re-starting Imuran. After a few weeks on steroids and a scope, my GI agreed to try...
I'm sorry you're struggling and feel rotten. Flares are nothing to mess around with. I'd be asking for Rowasa and prednisone from the GP and pursuing a very quick referral to a GI....
Thanks all!...
I'm in limbo waiting on insurance approval for Humira. Totally new to biologics. Entyvio was GI's first choice, insurance denied and requires me to try Humira first. Not super excited about it but it...
Hey Catlover! It can be overwhelming when first diagnosed! If it eases your mind on the Lialda dose, with the exception of a 2 month window where my GI tried to drop it, I've been at the max dose of...
Hey Fletch! I'm currently climbing out of a bad flare after enjoying years of remission and waiting on insurance approval for Entyvio. I've never been on a biological before, but my GI is having lots...
For me, the fatigue is worst the first 2-3 months and then it seems like my body adapted to it. I just started it again after being off of it for almost 2 years...can totally relate to what you're...
Great news!!!...
I suspect that most of us prefer to maintain remission with the lowest level of treatment possible. That med combo looks different depending on how we respond, severity of disease, etc. My two cents...
Depends on where the inflammation is for me. If it's the first 10-20 cm, typically only symptom is bleeding. It comes on fast with no warning. Current flare is worse and doesn't affect first 20 cm...