5 weeks post long vanco taper and nervous

[deb30]

Hi all:
So the specialist I saw at the U. of Chicago on May 18 pulled me off the looooong vanco taper that I had been on since mid January-- just 1 250mg pill a day from 3rd week in February until May 18. I was waiting and waiting and waiting to get an appt with this specialist. I've had some funky days here and there-- mostly that familiar burning sensation in my upper and lower abdomen-- and a few looser stools periodically, but mostly pretty darned good. Wednesday night (today is Friday) we went to a friend's house and I started getting the burning again and this time, I had 3 urgent, loose BMs. Thank God she's a good friend. How embarassing! Thursday, all day, I felt awful. Fairly formed BMs in the morning, but about 4-5 explosive ones that evening, and the burning/crampy sensations all day. Today I contacted the doctor's office out of fear and they ordered a C Diff toxin stool test and they'll see me next Thursday. Picked up the stool test kit and of course, I'm feeling a little better today, so I'm holding off on submitting a sample-- I'm not complaining!!! We'll see how tonight goes. So honestly--you are all SO experienced-- I thought that at 5 weeks I could begin to feel a little more optimistic about turning a corner on this! I didn't eat anything weird that could have triggered an IBS bout (I have had IBS for decades). Can it really come back 5 weeks later without provocation, like antibiotics? I take 2 Florastor daily, along with 1 BioK+ and have been following this regimen since January. I try to drink some Kefir, but I'm lactose intolerant, so I can only do a little at a time. I'm disgusted, nervous, frustrated and feeling like I'll never get over this. I saw in the doctor's original notes from May 18 that if it returned, the next step would be fidaxamycin, zinplava and if that didn't work, an FMT. My poor husband. He must have forgotten what the "old" Debbie was like-- fun, adventurous, happy. This has been going on since the last week of October and I'm so done with it. So.... some honest advice and encouragement please? I just lost my dad mid-April in a horrible kitchen accident and I'm trying to help my 84 yr old mom through this all. Can I REALLY be having a relapse 5 weeks out? Is this part of the recovery process? If it were really coming back, would I have good days mixed up with the bad ones? I'm so frustrated and sad.

[NanciT]

Hi Welcome to the site, please read the first thread for all new posters

I am sorry this has gone on for so many months...especially now when Dificid has become more known to physicians. I was on Vanco in 2014-2015 for several months and did a very long taper. In my case, it came back at 3 weeks....5 weeks seems like a very long time. I ended up doing a Dificid taper which cleared it. Hopefully the new specialist can help you get through this.

It's difficult to know what is going on, IBS is very common post CDIFF. I had to stick with a fairly bland diet but others on the site had no issues.

Hoping you feel better soon!

NanciT

[GtrGrl]

Mine came back after 2 months with no provocation, then I kept relapsing every few weeks. So, sorry to say it is possible. Did you do the test in time for your appt tomorrow? Good luck.

[deb30]

I did not retest after I picked up the stool kit because my symptoms improved by the 3rd day. I saw the gastro last Thursday and she seems to think its PI IBS because it comes and goes. I was doing great again until last evening when I started getting the rumbling and then loose stools about 5x that night. Watchful waiting today. Do we ever reach a point when we can say "I think I'm over it, unless I take an antibiotic?" Can we ever start to breathe easier about it all again? I'm now almost 7 weeks post vanco and then gas/rumbling/loose stool events seem to happen every 10 days or so. The doc seemed to think I was past the danger zone, but I see that some have relapsed at 8 weeks unprovoked. I've got my 10 year anniversary coming up in November and we'd like to plan a trip somewhere to celebrate, but I'm afraid to plan anything anymore. I'm so depressed and fearful all the time.

[GtrGrl]

I’m sorry you’re going through it. I remember feeling like it would never ever end and the thought of it all still flits through my mind even now if things go ‘off’ for a few days. But, it DOES get easier. Scars don’t disappear but they do fade.

Five times in one evening does seem a lot but maybe you ate something that disagreed. Your gut is still healing. I do think they use PI IBS as an explanation too often, though (they did with me). Are you trying S Boulardii?