The paralyzing terror of feeling ... well?

Hoping you get this under control soon. Feeling for you

How are you doing and feeling now? Did you go the the ER?

Neg on the c diff. Got 3 liters of fluid plus zofran, still having D every 20-30min. They’re discharging me after this last liter of fluid and second dose of zofran.

Had a CT that showed “colitis” on the transverse and right side, but no involvement on the left side. Which is weird because I have heretofore had left sided colitis, but now apparently that’s all better but the rest of my colon is screwed.

Doctor here talked to doctor on call from my GIs office and he agreed that I should stop the Xeljanz for now. Will follow up with my PA tomorrow for next steps.

None of this makes sense to me, least of all how I’m supposed to stay hydrated.

Thanks, iPoop. I’ve been hitting the Gatorade and water in an attempt to stay ahead of it.

I’ve got an appointment w/ my doc on 1/15, so assuming I stay out of the hospital until then I’ll ask for a repeat c diff test.

I live in a place bereft of decent hospitals, which is why I travel an hour and 20 minutes to my GI group. I knew I was in for a ride when the triage nurse, despite telling her that my on-call GI was concerned about c diff, said she wasn’t worried because I likely hadn’t been around anyone with c diff and hadn’t been on antibiotics recently. She had never heard of. Xeljanz.

The doctor I finished with was asking ME what to do and said they could keep me overnight and try to get me back to a broth-based diet. I reminded him that I had been pooping non-stop for over 24 hours at that point, having eaten nothing but half an English muffin this AM, and that I didn’t think 4 more hours was going to magically change that. His only response was, “Sorry. I don’t really know much about these GI issues and I don’t know what to tell you.”

On-call doctor from my group talked to him and wanted him to keep me for observation, but he didn’t really seem to think that would be a big help since they, an actual hospital, didn’t know how to stop the underlying issue of constant pooping. So I decided to come home since the only thing—not insignificant—that they could offer me was fluids, but I can’t live at the hospital so that didn’t make much sense to me.

Oh yeah. If I start feeling dehydrated again I will for sure get to (a different) hospital—and much sooner than I went this time.

I’ve left messages for my doctor and the PA that I usually see, and the on-call doctor from their group was updating the notes in my chart so they’ll be filled in. I hope I can get an earlier appointment with them, and that they’re able to get pre-auth for another med by then, as well. The on-call doctor said to stop the Xeljanz for now, in case the D from it was compounding things.

I react very poorly to steroids—pred gives me D. Yay! But I am basically begging for it, at this point, as that is at least manageable.

That is totally what I expected them to do! Hopefully, if I need to go back to the ER I’ll get a team that can actually help.

It was so confusing. Like, you are sending me home pooping 30+ times a day and everyone’s ok with it?!

Hey q — just UC, here. There are still a couple established meds I can try, as well as combination therapy (which my doctor prefers to save for situations such as this). I am guessing Entyvio will be next. My PA mentioned Stelara, but I think I’m a little gun shy at the moment about meds that have diarrhea as a potential side effect, and I’m not sure about insurance coverage since it’s not approved for UC yet.

I also need to ask him about the Xeljanz. While my initial c scope diagnosed me with left sided colitis, and a flex sig right before I started the Xeljanz confirmed inflammation was present on that left side, I’m not sure what to make of a CT that says my right and transverse colon are the only bits currently inflamed. I can’t rule out that I’ve developed pancolitis since the last c scope, but if my left side is now clear after 4 weeks of Xeljanz I don’t know what to think—especially since any healing should have started from the right side, I would think.

Thanks q. Assuming the doc is going to want a scope.

Dunno yet ... since the CT showed just “colitis” I’m not even sure it’s UC. The discharge paperwork said it could be UC, or could be infectious colitis, or reaction to a medication. So now I don’t even m ow if throwing steroids at it is going to be reasonable at this point, and I still haven’t heard from my doctor. The ER just sent me home with a shrug and instructions to come back for more fluids if I felt dehydrated again.

I really hope this is just some kind of GI infection that will clear up now that I’m off the Xeljanz. I can’t eat, I’m trying to force in some ensure but everything makes the cramping ramp up, and I haven’t slept for more than 2 hours at a time since Monday. I’m utterly drained.

Nope. No other stool testing. They saw colitis on the CT report and basically said, yep that’s the problem and no we can’t do anything for it.

It was 3am, I was exhausted and in pain. I pressed the point (“So you’re sending me home with no answers to get dehydrated again?”) a bit but he was so out of his depth I knew I wasn’t going to get anywhere. At that point I just wanted my own bed and bathroom.

I really think I should have been admitted for their on-call GI to evaluate. I was badly dehydrated when I showed up and the D has not let up. Thankfully I’m doing a fair job of keeping myself hydrated.

Wow...how did this happen from one extreme to yep, we are going to figure this out?

What is PA? Physician assistant?

q

A relief they are back...I'm assuming pred after the stool sample results are back.
Keep us updated!
Are you on probiotics?

q