Facing Unknown Issues

[Kuro]

Hi all,

I guess I needed to write about this somewhere, and as someone previously tested positive with C. Diff, I really couldn't think of anywhere else. It has me anxious.

I've been through one round of C. Diff treatment (Vanco 125mg 4x/day). Apparently community acquired somewhere. I never quite had all of the typical symptoms, but my very respected GI apparently felt it was close enough that it needed treating. Looking back, I wonder if that was so, but I guess there's no point in dwelling on trying to change what's already happened. Others on here have expressed the same sentiment, I've noticed.

Anyway. I tested negative for C. Diff toxins on 4/27 (C. Difficile Toxin by DNA Amplification - No toxigenic C. difficile detected). Recovery had been rocky, but I felt that it more or less matched up with early recovery for most people here, so I kept pushing onward. Now I have a new problem to figure out, hopefully not a C. Diff relapse. I'm 32 days out from Vanco and would like not to need the taper they planned next.

Long story short, about a week ago (give or take) I started experiencing digestive issues specifically related to eating. Drinking is fine, can have as much water as I want. A while after I eat, I'll hear bubbling and gurgling, then have a "stomach attack" which sends me to the bathroom til I empty out. Happens whenever I eat, even if it's simple stuff like the BRAT diet I'd been surviving on since diagnosis. It's very frustrating because I can go through the act of eating without issue, and I even have an appetite for the food. Only once it's moving through the digestive system do I have a problem.

So, I see the GI's assistant Monday morning. It's scary because I'm not eating much as a result of this, as I know what'll happen after I do. Empty stomach means no symptoms of the problem, but you obviously can't go on that way. I'm lucky I was overweight when C. Diff first set in.

Kind of hard to not fear the worst. My family is spent now that things have gone from normal C. Diff recovery to this, and I'm not sure that I could call it PI-IBS or not. There's no pain, just the prolonged emptying attacks in response to eating. Doubtful it's a virus or the like because I'm physically disabled and don't leave the house much. Wish me the best, I suppose. I'm pretty tired, too.

[OCmama]

I have had multiple similar experiences to what you are describing in the 17 months I have been in recovery from C. diff. WITH C. Diff it didn’t matter if I ate or not, I didn’t stop going, even when it got to the point that I was only passing pieces of my colon, mucus and lots of blood.
AFTER C. diff I have had 3 negative test results. During one episode that prompted me to test I had d for 13 days
6-10 per day and only lived on toast, but I would also have “emptying attacks” everytime after I ate (even though I was only eating toast and bananas).

I hope you feel better soon!!

[beth22]

There are GIs who specialize in motility issues. I see one of them because I have SIBO. It might be worthwhile to ask your doctor about giving you a referral to one of these specialists.

[Kuro]

It may be worthwhile, Beth, as I have always had issues with going very slowly. Unfortunately, GIs around here are not in great supply, and fewer still are well regarded.

Unfortunately, after the way things went last night, I am beginning to suspect a relapse. I can't believe it would've happened this soon after a negative test, but I fear it may have. I wasn't having pouring WD (knock wood) and didn't the first time, but there was a bad smell which set off my panic. Well, that and it just wouldn't seem to quit bothering me til I took my sleeping meds at 6am and drifted off.

I may have to call the GI's emergency number and see if he wants me to start the Vanco taper without a positive test. I hate to do it, to reset a month of suffering this with hopes of recovery and no proof, but I have the safety of both my parents and myself to consider. I've never relapsed, so I don't know that it can wait the weekend. Honestly don't know what to do in general.

Man, I don't know how I'm going to do this.

[Ril]

I would not worry about a family safety issue. It is very rare for c diff to be transmitted to family members. Just cleanse bathrooms well and be meticulous with hand hygiene.

I too would be reluctant to start a vanco taper so soon after a negative test and with symptoms that sound more like PI IBS or SIBO which is also related to IBS. There are meds specifically for those ailments. If your symptoms have changed drastically and you don’t think it was related to diet or anxiety you can usually get a test result the same day in the out pt lab of the community hospital and be sure before treating. That is what I did twice and spared treating unnecessarily but ultimately it is up to you and your dr.

Rita

[Kuro]

Hi Ril,

It's now approaching 9pm my time, so not sure I could get a sample taken to the hospital even if I wanted to. Kind of hard to give when you aren't eating much at all, besides. I definitely don't want to go to the emergency room; it takes 5-6 hours just to move on from the waiting room.

It turns out that my folks did fill the taper prescription, which was given just before I got the negative test back. The GI's assistant was 90% sure of a relapse at the time. So, I have the meds. Just a matter of deciding whether to call the emergency number or wait and see.

I have kept hydrated today. I don't have a fever, nor the typical kind of WD I hear about (again, knock wood). But, this not eating without an attack thing is new to my recovery. Stomach is mildly sore, more to the left. Have had some bubbles/gurgling even without food, but I've still had an easier day avoiding food.

It's hard for me to tell anything apart, being new to all this, but I really want to say it's leaning toward bad news. Just dunno what to do at this hour on a weekend.

[OCmama]

I personally would wait for a positive test result. I was mistakenly given vancomycin for presumed C. diff. Then I developed a CDI from being on vancomycin (vanco does compromise the gut). It is the worst being sick on a weekend or the holidays!!

[Medena]

Yes vanco can be given just like candies sometimes.
I too was given vanco by the er for a suspected relapse without waiting for the test results, while the test came back negative the next day, and I took a 14 days course to be later told by my gi i had taken it for nothing since the er test from that day came back negative and the diarrhea was most likely post infectious ibs. So try not to panic and wait it out to see what the test says and follow the 3 day rule. Not every diarrhea or gi symptom is cdiff even though maybe before cdiff kyou had no digestive issues, post cdiff ibs is a real thing. Its hard not to panic, but panic will take you nowhere. Talking from my experience lol

[Ril]

All I can add is that if you cannot give a sample without eating odds are it is related more to IBS than c diff....
C diff d is not usually dependent upon intake.

[Kuro]

Yes, I'm more having these attacks as a response to eating anything substantial. I got away with oyster crackers yesterday, for whatever reason. Two big pieces of well done toast? Attack, not the worst. Tried my normal brat dinner one night, bowl of rice with baked chicken pieces. Attack. I was able to eat these things on Vanco and through a good part of recovery.

The recent negative PCR test also included another round of tests for parasites, other bacteria, etc and came out clear. So, I don't know what it is, but something has to be done tomorrow. I can't go on not eating and am becoming a little fearful for my life in that regard. I get an attack within a few hours of eating anything substantial, so it's hard to believe I'm getting any nutrition from it. Nevermind I don't want to go through that each time...

I've browsed the forum a lot and the only other person I've come across who seemed to be similar to me was jjgood (though OCmama says she's had these attacks too). I don't know what happened to them, but it seems like they did okay on a combo of Levsin and Imodium with their PI-IBS. They were also having trouble eating much at all, even BRAT.

I really don't want to do a colonoscopy with things as bad as they are already, but I guess we'll see what his assistant says tomorrow. I am (knock wood) not having what you describe, Ril, but I never did prior. That's why it always haunts me whether I should've taken the first round of Vanco and may have damaged myself. Granted, C Diff was the only thing to come up positive on a PCR checking for a whole slew of things, so I guess there's no use dwelling on it.