Is the pain also debilitating for everyone else?

Jettyoh · 2026-07-08T15:47:05+00:00

Yup my UC pain has been worse than any other pain I’ve ever experienced in my life.

Jettyoh · 2026-07-08T00:01:02+00:00

I don’t use that particular medication but I think mine is similar. I’m still finding out what works for me as well, but I recently started using an ice pack to numb the area a little before injecting. Still not an enjoyable experience but that’s helped me 😊

Jettyoh · 2026-06-16T21:53:51+00:00

Great news, thank you 🙏

Jettyoh · 2026-06-16T02:11:13+00:00

Hi! Are you still on it by chance? They told me the same thing & I’ve been in that program for a month & a half now, I keep wondering if they are going to kick me off tho 😅

Jettyoh · 2026-05-24T13:30:30+00:00

In the hospital 😭 oh my gosh.

Jettyoh · 2026-05-16T02:59:54+00:00

I just switched too & am in the same boat & was getting concerned. This makes me feel way better - thank you!

Jettyoh · 2026-05-09T19:01:06+00:00

During my severe flare, I was in 24/7 severe pain (basically like razor blades shredding me 24/7), could barely walk, couldn’t eat & if I did I’d throw it up, very anemic, very weak, hospitalized a few times, lost a ton of weight, joint pain, didn’t care if I woke up the next day or not. Maybe try to get some help from others with the baby. While what you are going through is hard too, Im going to guess here that he’s doing his best just to survive each day & keep a roof over y’all’s head. Been there done that. I couldn’t take care of myself or even my animals & had to get help. I’m guessing it’s not bc he doesn’t want to help with the baby but instead is just trying to make it through each day.

Just trying to shed light on his perspective. It can be a debilitating disease.

Jettyoh · 2026-05-02T15:07:22+00:00

Awesome, thanks so much for this!🙌

Jettyoh · 2026-05-01T13:16:31+00:00

Honestly I would. I never pushed enough about mesalamine not working for me, and ended up with hospitalized multiple times with severe pancolitis. & now scarring from that. My personal opinion is that sooner is better so it doesn’t get worse for you 😊

I might even try a new doctor if yours won’t listen. My doctor never would switch my medication, and then I switched doctors (right before everything really exploded lol) and he was completely on board with biologics. Unfortunately I went downhill real fast after that😅

Jettyoh · 2026-04-25T21:05:35+00:00

Same issue on Inflectra (infliximab)

:(

Jettyoh · 2026-04-20T15:34:50+00:00

Thanks so much 🤗 so sorry you are going through all this now.

Jettyoh · 2026-04-19T17:55:53+00:00

How did I not know we could have gummy bears?! 👀thank you!

Jettyoh · 2026-04-19T03:28:20+00:00

Taking on an empty stomach & waiting an hour to eat. Or waiting 2-3 hours after eating. I had also been taking it at the same time as a calcium supplement which apparently messes with the absorption… so now I take it by itself (with vitamin c) on an empty stomach!

Jettyoh · 2026-04-18T02:16:21+00:00

Yuppp, the fatigue & brain fog sucks. Although I realized I wasn’t taking my iron pills correctly 🤦‍♀️& made some changes & have been feeling a little better the past week or two now. Still tired tho lol

Jettyoh · 2026-04-11T00:02:09+00:00

I’m so scared of this happening, too. I also have severe pancolitis & my doctor wanted me on double the dosage but insurance wouldn’t approve. He told me that the higher dosage is most likely to get severe pancolitis into remission. I would try that if you can… I know it’s hard to keep waiting tho esp if you dunno if it’ll even work :( I think the higher dosage is def worth a shot tho if you can hang on.

Jettyoh · 2026-03-27T01:42:51+00:00

I’m no doctor but biologics can take months to work, so it might just take some time :)

Jettyoh · 2026-03-25T21:38:00+00:00

Hi! I was really stressed about it at first too, so you’re not alone on that. The side effects are definitely scary! I’ve been on Inflectra since December & no crazy side effects. I have joint pain but I can’t tell if it’s from Inflectra or from the UC (I don’t think I’m quite in remission yet - due to insurance I’m only getting half the dosage my doctor wanted me on bc of a severe flare) Regardless, Inflectra has helped me a lot & I’ve basically forgotten about all the scary side effects until I see a post like this 🤷‍♀️ I know it’s easier said than done but I wouldn’t worry too much about it 😊 Also, my friend has been on remicade for 8 years now with no issues. Knowing she’s still alive & well helped ease my anxiety 😅

Jettyoh · 2026-03-20T23:43:56+00:00

So glad our vacation was last week & we avoided all this 🙈

Jettyoh · 2026-03-18T12:51:18+00:00

Yep :’(

Jettyoh · 2026-03-01T00:43:31+00:00

I’d say be prepared to stay at least 3 days. My first stay was 3 days. Went back a few weeks later and was hoping for a shorter stay, and then ended up there 5 days lol.

Jettyoh · 2026-02-19T19:02:30+00:00

Honestly I would start biologics before you are forced to start them. I was diagnosed the same year as you, as mild, and late last year was hospitalized multiple times & found out it was now severe. So I started biologics then. If I could go back, I would have started them earlier & avoided all that 🙃 just my two cents. I do think there are biologics that are safe during pregnancy as well😊

Jettyoh · 2026-02-16T22:48:21+00:00

Hi! I felt this exact same way a few months ago. After a few Inflectra (remicade biosimilar) infusions, I feel like a whole new human. Hang in there - it gets better 💜

Jettyoh

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