Spoke too soon...minor flare on Remi?

So it looks like I may be having a minor flare. I just had my 5th infusion of Remicade on 7/7.

Upset stomach, slight cramping, frequency at 2-3, loose but not really D. No blood, urgency or mucus. Granted this is after 5 months of remission at 1 bm per day no other symptoms. I felt basically pre-uc until this past Wednesday. Do they come on this quickly??

I am 4 months post partum and I had to do a week of Macrobid for a UTI then 2 diflucan pills to prevent yeast (I'm breastfeeding)...so there is ALOT at play here.

Per GI I have upped my Lialda to 4 and started steroid enemas. Does anyone have similar experiences to this? Is it hormonal, post partum, antibiotics, UGH UGH UGH.

If this doesn't work we will do a short round of prednisone and I will ask to move up my infusion since I'm only 2 weeks into my last one. Thought Remi was my rock in this storm.

Please any input is welcome. Should I ask for a stool test? I have only had 2 flares both during pregnancy and these symptoms don't match those but I am all over them because I have a infant and a 3 year old.

I vote on the Macrobid also. Upping the meds and probiotics will hopefully help. I've had things get a bit wonky after treating a UTI but after a few days of upping the meds it settled back down.

I would guess this is GI upset is instigated by the antibiotics/antifungal meds. Remicade will never be able to mitigate problems caused by those. Your best bet would be to hit the probiotics hard and attempt to ward off C diff. Remicade also does not do anything to stop food-borne illness or things like Norovirus. I have had Noro and C diff since being on Remicade. When I asked my doc if I am MORE susceptible to these while being on Remi, I was told "probably".

Have you tried Saccharomyces boulardii? That one is supposed to be very protective against C diff. Some people do not tolerate it well, and the Diflucan would likely kill it anyway. If you're already taking 3 packets of VSL3DS I don't know if I'd take more. I only take the regular strength and never more that 2 a day.

When the whole family got Norovirus at a potluck earlier this year, my husband was sick for 2 days, daughter for 1 day and me for 4 days. Then I was ok for 2 days before being hit with a "flare" which was actually C diff.

Yes, C diff is awful. What amazes me is that I can be fine one day and have a full-blown infection the next. I got my doc to put in a standing order for the C diff test and give me some collection supplies, so if I think I have it I don't have to waste two days getting in touch with them and picking up supplies before the test can be performed.

I was hospitalized for a C diff flare in November when I was started on Remi. Also had FMT in the same hospitalization. Since then, I have had two flares, one caused by the Noro>C diff, and another that was C diff. I feel all of my flares have been instigated by C diff. Definitely some major dysbiosis going on in my case.

Maybe the FMT would have taken better if I weren't being hit with so many things at the same time. I think they should do this when I'm feeling good as well as provide instruction on how to keep the new flora viable, not give it to someone when they are emptying out their guts every 15 minutes. I know it's used to treat C diff, but when you're prone to recurrent infections the timing could be better.

I sent off my sample to uBiome last week and will be interested in their findings.

I just had a Remi infusion yesterday, my first one at 10mg/kg. I am feeling pretty punk today, with the headache I can't get rid of and all of the aches going along with it. It's weird that I can FEEL the Remi going to my trouble spots (left colon and all joints) within about an hour of the infusion starting. It makes the areas a little painful then after a few days they feel better.

At least I made it to the infusion without the problems starting up again. Previously I had problems in the two weeks prior to the infusion.

@jim - it sounds like you are moving in the right direction. Prednisone has very bad long term side effects. Its not a maintenance medication. It will only hide your symptoms until you find the right one to keep you in remission. I hope the next few transfusions put you there. iPoop one of the moderators has a great story on Remi. Took him a while but he is in a stable remission after a year of transfusions.

This is an amazing forum. I learned more here than from any of my 4 GIs could have ever taught me. And now I can have discussions with my current GI and be on the same page...knowing my options if he suggests something I'm not comfortable with. Take some time and research through here :)

Yes it is crazy stressful but after my first baby I was undiagnosed and insanely sick. At least this time I know what is going on and can be all over it like a wet suit!

I think the antibiotic and anti fungal caused your issues. Extra VSL may have also contributed - too much of a good probiotic may hurt more than it helps.

I'd give the rectal med two more days and if you're not seeing real improvement, do the short-term Pred. However, I don't think it needs to be two weeks. I'd do 40 mg x 2 days, 30 x 2 days, then 20 x 1 day, 10 x 1 day, and 5 x 1 day-while still doing the enema once per day. That's worked for me with no side effects.

You and your doctor are right on about stopping the flare ASAP. I've learned from experience that acting quickly is key.

Don't panic-you're doing all the right things!