RyanC - Ugh, I’m sorry. ☹️ Hopefully things will get better for you. We’re you having issues with fatigue while on the biologics? It’s very frustrating, having to scale back so much when you’re used...
I’m familiar with exercise intolerance - in my case, that seems to fit less well, as I’ve been cycling/spinning at a much greater effort level than the running I’m currently doing. I’m also familiar...
I kind of figured - I also poked around a bit here and didn’t find anything. Docs just say go easy and emphasize hydration. My assumption currently is that it’s just going to take awhile to adjust,...
Yeah, I did my last marathon during a flare and ... never again. Prior to UC running never gave me GI issues. Since then, however, it seems to affect me greatly, when flaring, and in a more “general...
That’s awesome! Do you ever experience breakthrough symptoms when starting back up?...
Thanks! I am about 3 weeks post-scope 😂...
Hello! I had a colonoscopy last month and got great news: Colon looks totally normal, save for 4 inches of quiescent inflammation in the rectum. I’ve been feeling great — not perfect, but it was a...
That sounds terrible! So far I’ve been lucky (with the exception of the Xeljanz) and have tolerated all my meds without issue. I’ve had my second maintenance dose of Remi, so they were able to push...
I am definitely considering therapy. I did a round while in grad school, when my anxiety was a little bananas, and found it super helpful....
I already exercise as much as I’m physically able (which is still not as much as I’d like, but I’m balancing physical stress with a not-very-healed colon). The issue is very situational —...
Good to hear! I’ve got my first two doses in and so far, so good. I was a little worried about my blood pressure, which is super low to begin with (usually around the 100/60 range) but it seems fine...
Xeljanz landed me in the hospital with severe dehydration due to 40+ trips to the bathroom, daily, for 3 days. It took another 3-4 day of not taking it before things started to regulate. I was so, so...
Just wondering if anyone has any experience with propranolol for anxiety caused by their UC. I was doing really well on Remicade but the first 8 week maintenance interval was too long (I also started...
Poopydoop: YAY!!! 🙂 iPoop, you speak the truth. 😆 I think I survived on chocolate for a solid week once I started to feel better, since it always seemed to make matters worse when things were bad....
Yeah I haven’t seen it listed—and I agree re: prednisone, though that typically makes me less hungry, and I’ve been off it for over a month. I haven’t been feeling so bad lately that my appetite’s...
Just got my first maintenance dose of Remicade last week (it had been going well until about 2 weeks before my recent infusion when I started to backslide, now it’s improving but much more slowly...
One step ahead of you, TT — I’m already an avid knitter 😉...
Awesome! I was on track for my first 50 miler when I was diagnosed. Now I’m aiming — optimistically — for spring 2020, but realistically for 2021 ......
Ah! Good luck getting back into it! I’ve spent the day hand-wringing over this and finally messaged my doctor, who suggested I make a point to avoid running around my pred taper days — which...
I’ve taken Humira (only very mild response) and Xeljanz (terrrible GI symptoms, had to stop; also not technically a biologic). On Remicade now, which seem to be working, so far. I wish the Humira...
I am very slowly improving from a nasty year-long flare and have promised a friend I’d do a 5K with her in September. I’ve done a couple marathons, and September is approximately six lifetimes away,...
iPoop— I had no idea how big a victory granola (with nuts! And fruit!) would be 😄...
Thanks! Me too — I could get used to this!...
There’s just so much excitement associated with UC ... 😂 Glad I’m not the only one who’s had a bit of panic about this. I felt like a total goober for not thinking about the Lialda sooner. Poopydoop...
I do flush after every use, and for the first time today I watched it happen in real time. Very exciting! 😂...
So I’ve spent the past several weeks wondering if I was soon to perish from liver disease as, once or twice each morning, my pee has been a terrible rusty orange color — but only ever in our...
Exactly! I’ve spent a year whining that I wish I could stop pooping so when I stop pooping I freak out entirely. 😂 This whole disease is such a head trip ......
Right now when I have a one-a-day I live in fear of the following day 😂...
iPoop — that’s kind of how I think I’m responding, tho impossible to know yet with the pred. About a week after my first infusion is when everything started to firm up, which is super unusual since...
Thanks — me too. It still feels weird to say that my doctor isn’t worried about copious butt blood because this is my life now. Also hemmies. So I don’t even know what’s bleeding. #AnyDayNowRemicade...
The blood never really went away; I’ve been flaring for a year and have just started having more formed BMs, so my doctor hasn’t been worried about it given the friability of my colon at this point....
While I am sorry to hear that your symptoms kicked up with a dosage drop, because that sucks, I am also heartened. Thanks! I kind of figured I still feel way too good for it to be a catastrophic...
Thanks iPoop — It’s good to hear that maybe a bit of symptom worsening isn’t the end of the world (as long as it bounces back). I’m not sure if the cranky/tired is withdrawal, so much as my typical...
Curious (and probably just mining reasons to be not-pessimistic, if im being honest) I’ve been feeling really well, and my doctor started me on a 5mg/week prednisone taper after my second Remicade...
Doc wasn’t keen on antispasmodics right now. She suggested adding fiber, which I’ve done—Metamucil, plus gradually increasing dietary fiber back to normal levels from my low residue diet. It’s...
Hi all, I’ve been bridging with pred (40mg) for the past 4 weeks while I go through Remicade induction. Just had my second infusion 2 weeks ago and the doc started me on a 5mg/wk taper of the pred...
Xeljanz was awesome in that it seemed to begin working very quickly. Unfortunately, I did not tolerate it and the gastro side effects landed me in the hospital. *This is extremely unusual* I’ve been...
Can you talk to your doctor about splitting your pred dose? I’m on 40mg and have to do 20mg am and 20mg pm, otherwise I was peaking and troughing noticieably. Splitting it helped distribute the...
Food makes no difference to my UC....
I’m just super hard on myself, while also trying to grant grace where I feel I can without letting myself spiral out of control. Basically: I don’t allow myself the option of feeling too bad for too...
Pred never fixes me, either. It makes me moderately more comfortable and functional, which I appreciate, but I’ve never experienced the reversal of symptoms or return to relative normalcy that others...
Pred is weird, and different for everyone. For me, 40mg of pred gives me an initial hit of brilliant, blinding euphoria before the side effects kick in—primarily diarrhea. So, I never get any relief...
I hit an antihistamine for PND — they dry things up. Even Benadryl can be super helpful....
My current and past GI and rheumy practices operated on a one year system: see the doc once per year and their NP/PA for anything interim. There’s no reason your doctor shouldn’t be able to get you...
I'd get a second opinion from another gasteroenteroligist practice before buying into that lol. Never heard it before, and I've been reading this forum for 7 years now. I'd call it...
iPoop my doc is also reticent about combining pred + immunomodulators + biologic. She says they see more opportunistic infection than gains from combining them. Their standard of care is to get you...
Most doctors don’t like prednisone, and for fairly good reason—long term use is not good; multiple courses in a year are not good. So many try to limit it unless you are really, really suffering,...
Talked to the doctor and she thinks it’s the UC/my colon being a jagoff as it remembers how to work. But because of the uptick in blood—specifically some thicker blood on the TP she’s calling in some...
Never even thought of supps! Will chat with doc....
When my doctor discussed Entyvio with me she was not thrilled about it. Nothing else has really worked for me and it takes 4-6 months to know if you’re going to respond. If you’re at 5’ish months and...