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Already not feeling great. Possible C diff?

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Ulcerative Colitis
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Posted 9/27/2021 8:53 AM (GMT -8)
Well, I knew if I posted that I was in remission the other week, I would soon not be. Lol. I got a UTI a week and a half ago and took Keflex antibiotics for it. I only took 3 days' worth and felt fine while on them. Finished them a week ago. On Saturday, I started feeling mild cramping throughout the day and during BMs. Still no blood, diarrhea or anything bad but didn't feel 100% anymore. Yesterday I felt normal. Today, I woke up feeling nauseous and again have had the mild cramping and I just feel off. I then remembered my GI telling me to keep an eye on my symptoms while taking the antibiotic due to c diff risk so now I'm wondering. I have noticed that every once in a while since on Xeljanz, I will have an "off" day here or there. It seems to have a really short half-life so if I miss even one pill, I feel like I sometimes feel a little off. However, I've been really good about not missing any lately. I also stopped doing Rowasa probably 2 weeks ago. Maybe it could be that?

Anyway, I'm getting a c diff test. I don't even have diarrhea so I don't know if it could even be c diff or if I'm just freaking out. Honestly, I'd rather it be that than a flare. Just wanted to complain, thanks.
Posted 9/27/2021 10:57 AM (GMT -8)
Hang in there. Did you start probiotics when your antibiotics were done? I still (even after this many years of remission) will have off days that will last a week or more sometimes. Actually was having an episode not that long ago that was off and on for a couple of weeks that finally resolved AFTER a course of antibiotics for a UTI! So go figure! This stupid disease, right? 😀.

Anywho when I’m feeling off I resume suppositories and/or uceris foam (all I have on hand at the moment).

I still freak out too. I don’t think the fear of losing a hard-won remission ever truly goes away — it just subsides and lingers underground.

Might want to resume nightly Rowasa if you haven’t already. I’m a firm believer now of not hesitating to hit an off day with whatever is on hand!
Posted 9/27/2021 5:16 PM (GMT -8)
I totally agree. I just restart the enemas and eat plain for a bit till it subsides. I did not completely stop the enemas as I was told to do but I cut back. When I feel off I increase them and issues resolve. Now I hope I didn’t jinx myself 🙃😬. The deep seated fear is always there.
Posted 9/27/2021 9:45 PM (GMT -8)
Wellll, first expectsd comment is get back on the enemas. Second would be get on probiotics.

Worth having c.diff... and also calprotectin test done?

q
Posted 9/28/2021 6:10 AM (GMT -8)
Thank you all. I'll re-start the enemas. My GI called in c diff and calpro labwork.
Posted 9/28/2021 8:44 AM (GMT -8)
A nurse at a lab told me one time that they don't even run a c diff test if the stool is formed. Don't know if she knew what she was talking about or not.

Hopefully, it's just a couple off days. Everyone has them -- even non UC, healthy people. Have you added any probiotics to help repopulate good bacteria since you were on the antibiotics?

Hope this passes soon!
Posted 9/28/2021 10:46 AM (GMT -8)
Oh no, sorry to hear this. Hopefully it is just a temporary reaction to the antibiotics and will correct itself. How are the migraines and allergies doing?
Posted 9/29/2021 4:40 AM (GMT -8)
Hi Sara

How’s it going?
Posted 9/29/2021 8:39 AM (GMT -8)
I feel fine again. I guess it was just a couple off days. Thanks everyone. I'm not used to having an off day here or there without it leading to something worse.
Posted 9/29/2021 8:41 AM (GMT -8)
Serenity: Well, I guess it didn't cure my allergies but they are definitely improved. Same with the migraines.

PA: I've read that online before, but I've had many c diff tests run on solid or "mushy" stool over the years, so I guess my lab doesn't care. No, I didn't add probiotics. I never felt like they've done anything. Thanks though. smile
Posted 9/29/2021 10:40 AM (GMT -8)
Now it hurts again.
Posted 9/29/2021 5:51 PM (GMT -8)
Oh no. I think you need to chill and use your enemas and give it some time. It's so easy to think the worst when you've already been through so much. I really hope it's a minor blip and you're feeling 100 percent again soon. Keflex is pretty rough. It's probably from that but it doesn't mean it will continue. You're smart to get the stool tests. Fingers crossed for good news.
Posted 9/30/2021 7:52 PM (GMT -8)
Thank you, Kay. I think you're right. It's been a bit strange so far on Xeljanz. I will have a bad day or two and then be fine. Today I was fine again.

I don't have c diff. Got the results back yesterday. Waiting on calpro but it probably won't show anything. Hope you are doing well.
Posted 10/1/2021 6:00 AM (GMT -8)

Sara14 said...
Thank you, Kay. I think you're right. It's been a bit strange so far on Xeljanz. I will have a bad day or two and then be fine. Today I was fine again.

I don't have c diff. Got the results back yesterday. Waiting on calpro but it probably won't show anything. Hope you are doing well.

Thank God. No CDiff. That’s great news.
Posted 10/1/2021 7:30 AM (GMT -8)
Thanks! And I feel fine today so who knows.
Posted 10/1/2021 7:30 AM (GMT -8)
Rusty: I got a new email address and wanted to let you know. It's in my profile.
Posted 10/7/2021 9:09 AM (GMT -8)
My calpro was normal as well. My GI said it could be IBS but I've never had IBS before so I'm not sure what to think. He said he thinks I should try decreasing the Xeljanz dosage now since the labwork is normal and I'm back to feeling mostly normal other than some pretty mild crampiness once in a while. It just feels odd to have so many "off" days.
Posted 10/7/2021 6:16 PM (GMT -8)
As Ipoop would say, the road to remission is not always level but full of hills and valleys and switchbacks. I think you’re well on your way but you probably should expect a few off days here and there. I know I did. As long as the good days outnumber the bad!
Posted 10/8/2021 6:04 AM (GMT -8)
Thank you. He's having me reduce my dose though so I'm a bit worried. Hopefully it will be okay.
Posted 10/8/2021 6:07 AM (GMT -8)
I should admit I never did add enemas back in, lol. I guess maybe I should do that.
Posted 10/8/2021 9:18 AM (GMT -8)
Your decision could be based on how you view the value of them. I suggest you do them.

q
Posted 10/8/2021 6:53 PM (GMT -8)
I value them. I've just used them since 2007 and mostly daily for the past many years so I guess I thought if I didn't have to anymore, that might be cool for a while, ha. And I'm kind of confused because my calpro was really low, but then again, that's happened to me before while having moderate symptoms. Thank you for the encouragement quincy.
Posted 10/8/2021 9:12 PM (GMT -8)
It could very well be that your inflammation is mild and limited...therefore your calprotectin level might be low because of that.

Even more reason to use the enemas... a best friend in the waiting 😎

q
Posted 10/9/2021 8:51 AM (GMT -8)

quincy said...
It could very well be that your inflammation is mild and limited...therefore your calprotectin level might be low because of that.

Even more reason to use the enemas... a best friend in the waiting 😎

q

That has been my experience....exactly!
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