Previously IBS-D, now have C-Diff

[GMels]

Hi everyone, 

I'm hoping to hear from someone who has been through this or knows someone who has. Right now, my gastro Dr is out of the country. I have a message in for a nurse to call me but trying to get in to see another Dr in the practice is futile as they are booked months out.

I've had IBS-D since mid 20's, I'm mid 50's now. Mostly well contained until 3 years ago. I was using Imodium to help. Mostly stayed away from my trigger foods. 

About 3 years ago, it really ramped up to the point I couldn't leave me house. If I absolutely had to, I wouldn't eat or drink until I got back, even if that meant into the night. Imodium usage went up to 5-8 a day.

Finally got into a Gastro Dr who prescribed Viberzi. It was a God send. I could leave the house about 98% of the time using Viberzi and Imodium. I still had to stay away from my trigger foods. My list of foods my body would tolerate was small. Plain chicken, white rice, or potato. No dairy, not a lot of veggies or fruits. Absolutely no garlic/onion.

Last week, I had emergency Gallbladder removal. They had me on a penicillin derivative for 5 days. When I looked up and saw that, I winced as my mother had C-Diff many years ago when she had pancreatic cancer. I helped to take care of her at times. I remember that smell. 

On my 1st day home, I wake to yellow bile diarrhea. It smells but not that horrible c-diff smell. I have it several times per day every day. Doesn't matter what I eat, I have it even drinking water.

I have a c-diff test. The C. Difficile Toxin pcr comes back abnormal and the C. Difficile Toxin EIA value is Not Detected. They start me on Vancomycin. From my layman perspective, I don't understand how they are getting that I'm positive for c-diff.

No one is able to tell me how this fits in with my ibs-d. Has that been wiped clean along with everything else in my digestive tract? Will I have a harder time afterwards? What do we treat? I'm a ball of questions.

I'm thinking of calling an infectious disease dr on Monday.

Anything I haven't thought of that you might suggest?

Thanks for taking the time to read my epic first post.

[Jeffrey Roberts]

Hello,

I think it's good that you really know your body and I'm sorry that you have been through so much. It is possible that the antibiotic disrupted your microbiota. I am very familiar with the C Diff testing. The first test indicated that you have C Diff in your bowel which isn't really that abnormal. Most people have it. The fact that the C Diff toxin was negative implies to me that you do not have a "C Diff" infection. It's a very accurate test. Treating you with vancomycin might have actually made things a little worse and start you on a path of C Diff infection with toxin. Let's hope not.

Infectious disease would likely say to not treat the presence of C Diff unless you are having 3 unformed stools per day or more with an elevated temperature and/or abdominal pain. I realize that's hard to tell from your history of IBS-D.

I would repeat the C Diff test in a few days and see if you are still negative for the toxin. If you are negative again, I would ask your doctor if you can stop the Vancomycin, and wait and see what happens. If you develop a fever then you likely have the infection.

Removing your gallbladder also causes more D in some people. You might need to take a bile acid sequestrant like cholestyramine. Ironically, some doctors think that cholestyramine will bind the the C Diff toxin. It doesn't. It's very confusing. Also, now that you do not have a gallbladder, Viberzi is contraindicated. Does anybody think that you had an emergency gallbladder removal because you were taking Viberzi?

I don't think you necessarily need to see infectious disease right away if this is your first true bout of C Diff.

Let's hope that things settle down and that you had only Antibiotic Associated Diarrhea which tends to go away once you stop the antibiotic.

If things settle down, I suggest you talk to your doctor if you are okay using Ondansetron in place of Viberzi. 4-8 mg daily should hopefully do the same thing as Viberzi. Your doctor likely does not know about using Ondansetron. You can refer them to the TRITON study which was published earlier this year.

[GMels]

Thank you so much, Jeffrey for your thoughtful reply.

I've wondered if the Viberzi brought this on but no medical professionals have said as much. In fact, when I was in the hospital, I was telling everyone I had IBS-D and asking how having my gallbladder removed would affect that. I also told everyone I was taking Viberzi. No one knew what it was & only 1 person looked it up on their phone while we were talking. Probably because she suffered with IBS. They all agreed I could start taking it again after I was discharged home. Thankfully I remembered the info from the pharmacy & didn't resume taking it. I called the pharmacy and they also agreed I shouldn't take it now.

I hadn't heard of Ondansetron. If my system goes back to how it was, I will look into that.

My surgeon was going to start me on Cholestyramine but wanted to do this c-diff test first to rule that out.

It remains to be seen how I'm going to be after all this.

Thanks again.

[Jeffrey Roberts]

Do you know the reason why your gallbladder had to be removed? The major risks with Viberzi is development of pancreatitis or sphincter of oddi spasm. I wonder if that was confused with your gallbladder? Just a thought.

Ondansetron has the brand name Zofran which is actually a nausea medication taken during chemotherapy. It is a 5-HT3 medication which works similar to the IBS-D medication Lotronex which manages abdominal pain and diarrhea.

I truly hope your C-Diff tests continue to come back negative.

[GMels]

I was passing gallstones & then got blocked up. No pancreatitis or oddi spasm, thankfully.

Thank you for the info on Ondansetron. I'm going to bring that up with my gastro.

Right now, she's telling me that if I finish the vanco and then have diarrhea afterwards, to call the office and she will put me on cholestyramine.

[Jeffrey Roberts]

I truly hope that the Vanco, whether you needed it or not, causes everything to settle down. It's tricky to test again for C Diff after being treated with an antibiotic.

[GMels]

Me, too. Having 2 different Dr's tell me that I have c-diff & to take the vanco is unnerving. I'm taking it at this point but with bated breath.

Thanks again for all of your help.

[Jeffrey Roberts]

Our daughter had recurrent C Diff last year that was very difficult to manage so I'm totally up-to-date on diagnosis and treatments for C Diff.

Fingers crossed that everything turns out okay for you.