u/UC_Buring

Like most people with IBD I’ve been terrified of this since getting diagnosed, but multiple doctors are in agreement that removing my colon is the best option for my long term health.

Right now I can’t leave my apartment to go to work, and when I have a BM it’s painful. Not a fun experience.

So while I’m scared, I know it’s gotta be better than this. I think I’ve made my peace with it, but I feel like you can only wrap your head around it so much, you know?

What should I expect? What do you wish you’d known before getting the surgery? I’m worried I’m trading one set of problems for another since it’s impossible to tell what type of complications I might have afterward.

Hello all,

After 4 weeks of fighting with my doctor, insurance, then Acreedo I finally started Rinvoq 4 days ago.

This morning I took my 4th dose, and saw the pill in my stool about 2.5 hours later. I kept doing my prednisone taper, and I’m supposed to take my last dose tomorrow.

What are the options if my body just isn’t able to absorb the Rinvoq fast enough? I know it’s an extended release but I really really don’t want to go back on another 8 week steroid taper.

I’m having no back pain and a lot less blood, but I’m still going 10-12 times a day and having urgency. I’m also still waking up around 2 times a night.

Is it just too early to tell if it’s working? I know it may take time to work but I’m worried because I saw the pill in the toilet today.

Hi all,

I started on Infliximab during a hospital visit, and it seemed to reduce a majority of the inflammation in my colon, but I didn’t get any real therapeutic effect until the 3rd loading dose. I was also on 40mg of prednisone.

I felt great, had 1-2 normal BMs and was able to gain weight back.

As I keep trying to taper the symptoms would come back and I’d have to go back up.

6 days before my last infusion I went from feeling normal back into a full flare. Couldn’t sleep, couldn’t eat, 9-10 BMs a day all Bristol 6 or worse.

After my infusion I went back up to 25mg and now I’m down to 15mg and my symptoms haven’t improved.

I don’t have antibodies, but my trough level was 13 before my last infusion. Which should be way more than enough.

So my question is: At what point does a GI say “okay this one just won’t keep him in remission/isn’t working well enough”?

Hey all,

When I had my last loading dose of Infliximab I was on 40mg of prednisone and I felt great. I felt like 90% back to normal.

Right before my last infusion I started feeling awful again, and my GI said just to wait and get my next infusion. I did and it helped a little but I don’t have any formed stools anymore and the blood started to come back, just a little bit at least.

I also started taking Prozac because my anxiety levels were through the roof and I started having these bad episodes every time I went to the doctor. Now I can’t sleep, and for 2ish weeks I felt so incredibly anxious it was hard to function.

I’m just so over it. I feel like I’m trapped in my body and I just want to feel normal again. I just want to switch to Rinvoq or to literally anything else because even though my inflammation went from severe Pancolitis to mild in my rectosigmoid the Infliximab clearly isn’t enough to finish the job.

I just want it to be over, I just want to feel well again. I’ve been on steroids forever and I’m just covered in acne and my nervous system is shot.

Hi all,

I’m having my first maintenance dose of Infliximab this Friday.

My first two loading doses did just about nothing for me, until my final loading dose almost 4 weeks ago now. After that final loading dose I felt great. I stopped bleeding had energy and could function at about 90% of where I was before I was sick. I even put weight back on and got all the color back in my face.

This week I tapered to 20mg of steroids, and I started having diarrhea and around 6 BMs a day. I also started having some cramping and fatigue. I’m supposed to be getting my first maintenance dose this Friday.

I had a tiny tiny tiny amount of blood yesterday morning, and some blood this morning (just enough to see when i wiped.)

The symptoms I have right now are like nothing compared to what I was experiencing when I first got diagnosed, but still it’s a little unsettling to have been doing so well just to start feeling bad again.

Is this normal on biologics? I know it’s normal on a prednisone taper, but it makes me worried that maybe the Infliximab isn’t staying in my system long enough and I’m just gonna feel bad until after my infusion on Friday.

Has anyone else dealt with this?

Hello all,

I was diagnosed in March of this year. I started Infliximab at a lower dose than my GI wanted because my insurance would only approve 5mg per infusion instead of 10mg.

Since starting Infliximab I’ve needed a whopping 5 blood transfusions. 2 just in the ER, and now 3 in yet another hospital trip. My GI wants me to do my last loading dose of Infliximab this week, and to see if I get the full effects of the medicine. If not, she wants me to switch to Rinvoq.

I’m concerned, because as I understand it, Rinvoq is a super potent and like a last chance med for people who don’t respond to anything else. So if I fail Infliximab, am I gonna have to get my colon removed?

The other thing is, I’ve had a few CT scans and ultrasounds, and my colon since starting Infliximab has slowly become less inflamed. Now instead of my whole colon it seems like only my ascending colon and rectum are inflamed. So, clearly SOMETHING is working.

I’m just really paranoid about my colon getting removed lol

Hi, I spent two weeks in the hospital in late March and early April where I was diagnosed with UC.

I lost 30 pounds, have had two blood transfusions, and I’ve been on prednisone for what feels like forever. Starting to get acne and mood swings :(

I started Infliximab in the hospital and I have my final loading dose next week. I’ve had two blood transfusions since starting Infliximab.

I mean things are improving, I go 6-8 times a day now instead of 30+, the bleeding is worst in the morning and by the afternoon/evening I don’t bleed at all. I can let urges pass now and I can do normal stuff like go out to eat with my girlfriend.

But I’m still really concerned. I’m still bleeding and having diarrhea and now that I’ve tapered down to 30mg of prednisone I have some mild cramping.

I’m also just kinda exhausted from deciphering every tiny thing that happens to me… I’m sure you all can relate.

My thing is: it *seems* like the Infliximab is working but maybe it’s just not working enough? Idk. Any advice/support would be appreciated.

Hey all,

I’ve been in the national guard since 2021, when I was 19. I commissioned through ROTC, stayed in the guard, and completed BOLC.

I recently got hospitalized for IBD, twice. I went through the wringer. 30 pounds of weight loss in two weeks, anemia, insomnia, shitting blood 9-10 times a day, and basically losing all sense of a normal life.

I got put on a biologic and it seems to be working… kinda. As far as I know from the reg this is an automatic MEB, and everyone I’ve talked to has told me to go ahead and submit an intent to file with the VA.

I’m not trying to make everyone here my therapist but I feel like a shitbag. I mean, I never deployed, I never really did anything. I was just a guardsman for 5 years. The thing that sucks is i LOVED being a guardsman. I loved it, I loved the Army and I loved being an officer. But now I feel like a huge door just shut in my face.

I was working on my ranger school packet, I had big plans to stay in for a while, and become a JAG once I hit Captain/Major.

I know there’s a life outside the Army and I really should know that as a guardsman. I don’t know, something about being a “disabled veteran” or even a veteran… I just feel like I didn’t do anything to deserve it. There’s lots of guys/gals that did, and I don’t feel like I’m one of them.

Thanks for coming to my Ted Talk. I’ll take some plain white rice and eggs, no seasoning please (my tummy hurts.)