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Recurrent C.diff and Nausea

Hello everybody...It has been a long time since I have checked with the forum. My son finished college last May....it was a struggle the first three years,
many problems with food, weight below 100 pounds, symptoms.....His last year everything seemed to get better. Though he has never been symptom free, he was able to tolerate more foods, and he gained about 20 pounds. Now he is working in the east coast and had seemed well until the beginning of the year.

He started feeling nauseous after breakfast, and just generally having a "not well" stomach. Even if he only had tea in the morning, it would happen. Some days were ok. This went on for a couple of months. Since he was due for a colonoscopy anyways, he did that, and he was diagnosed with c.diff. He wasn't having loose BM's or blood like the fist time he was diagnosed with c.diff. He was put on vancomycin, 4 time a day for two months and he felt much better (he always has when on antibiotics). Now, about a month after finishing the antibiotics, he is feeling queasy again. His colonoscopy came out clear by the way. He has texted his GI doc who told him to give it to the end of the week to see if he feels better. I am wondering what else could make him nauseous, especially after a tea, or a meal (but fairly ok at other times) or if anybody else has had experience with recurrent c.diff infections that have these kinds of symptoms, and not the typical multiple loose BMs, etc. I'm trying to arm myself with questions or other possibilities before he talks with his doc again.

Thank you so much in advance.
 
Funny you should write as we are inpatient dealing with a bunch of things and O is also quesey on and off. Often after eating but not necessarily all the time. Sometimes it is even before she eats. Her old doc's nurses asked about c diff and I said, "but she is having some solid BM's". Hmmm.

I will page Maya142 but another reason for his feelings comes to mind and that is gastroparesis. Maya is an expert on both conditions.
 
Oh and another thing to look at would be SIBO. Especially after all those antibiotics. IBS but that is the least likely I would think. Has he been tested for Celiac? Did the do an upper endoscopy at the same time as colonoscopy?
 
Hi crohnsinct! That is interesting that O is experiencing something similar.......I'll be interested to hear what they tell you. I'm so sorry she
is an inpatient at the moment....I do hope things get better for her soon!

Regarding Celiac, he has been tested. They unfortunately did not do an upper endoscopy at the time....I wish they had since he was already
presenting with this problem. I had not thought of SIBO and will for sure look into it....thank you!! At one point, several years ago, they said something about SIBO and, if I'm not mistaken, they gave him an antibiotic that is not systemic, but mainly gets to the gut.....not entirely sure it was for that. I need to ask him about that because to me, it would make sense that his microbiome is totally messed up. He did take Florastor while on the vancomycin, and a couple of weeks after.
 

Maya142

Moderator
Staff member
He was put on vancomycin, 4 time a day for two months and he felt much better (he always has when on antibiotics). Now, about a month after finishing the antibiotics, he is feeling queasy again. His colonoscopy came out clear by the way. He has texted his GI doc who told him to give it to the end of the week to see if he feels better. I am wondering what else could make him nauseous, especially after a tea, or a meal (but fairly ok at other times) or if anybody else has had experience with recurrent c.diff infections that have these kinds of symptoms, and not the typical multiple loose BMs, etc. I'm trying to arm myself with questions or other possibilities before he talks with his doc again.
My daughter has had recurrent C.Diff for 6 months. She has had C.Diff 6 times now! It can be REALLY hard to get rid of.

Does he have other symptoms, besides the queasiness? Is he having diarrhea? Because if there is no diarrhea, it is very unlikely to be C.Diff. In fact, many labs will not even bother checking solid stool for C.Diff.

My daughter was put on Vancomycin the first 3 times she had C.Diff. She had a hard time tolerating it, but the first 2 times, it got rid of the C.Diff.

The third time was this past November. She was put on Vancomycin for 2 weeks and seemed to improve. Then went downhill and we re-tested and she had C.Diff again. Next tried a different antibiotic - Dificid. Did a 2 week course, plus a month long taper of 1 pill every 3 days. At the end of the month, she lasted 6 days - only missed 2 doses and the C.Diff came back with a vengeance. I'm talking watery foul smelling diarrhea, horrible abdominal cramping and fever.

This process repeated itself again and then we finally saw an infectious disease doctor about a Fecal Microbiota Transplant. He looked at her meds and told us that PPIs are a BIG risk factor for C.Diff. My daughter had been on a double dose of a PPI due to Gastroparesis/reflux and being on an NSAID for her arthritis. She was also on Pepcid.

He said we could do the FMT, but on such a high dose of a PPI and Pepcid, C.Diff would likely come right back. So we had to taper her PPI - cut the dose in half and stopped the Pepcid. Instead we are using Carafate and Maalox, since those are not likely to cause C.Diff.

After that she had an FMT via colonoscopy in May and improved a LOT. But the improvement did not last long and now we are re-testing for C.Diff. AGAIN :cry:. Apparently for some patients, multiple FMTs are needed. Additionally, post--infectious IBS is common after C.Diff. It can cause diarrhea, nausea, cramping etc. If it's post-infectious IBS, then they treat that with Rifaximin for two weeks - Rifaximin is an antibiotic that only kills certain kinds of bacteria, unlike a regular antibiotic like Cipro that wipes out your entire microbiome.

If he's having diarrhea, then he probably needs to be tested again for C.Diff. If it's just nausea, then it's likely something else...like CIC said, it could be a motility problem like Gastroparesis.
 

Maya142

Moderator
Staff member
At one point, several years ago, they said something about SIBO and, if I'm not mistaken, they gave him an antibiotic that is not systemic, but mainly gets to the gut.....not entirely sure it was for that.
That sounds like Rifaximin actually. It's also used to treat SIBO. After months of abx for C.Diff the microbiome can get totally messed up, which is why post-infectious IBS or SIBO are so common after C.Diff.
 
Hi Maya! Thank you so much for checking in! I'm so sorry your daughter has had so many problems with C.Diff. I hope this new test is negative. I think the Riflaximin is easier on the body, and hopefully she will feel better soon....it's too much for a young person to deal with! How long before you get the results? I was surprised that she was put on vancomycin and subsequent others for two week periods with slow tapers. N was put on it for two months, taking it 4 times per day! He does not have diarrhea...quite the contrary. I told him to make that perfectly clear to his doctor. He texted me on Thursday to say that his doctor sent him for another c diff test, but also put him on Xifaxin now for two weeks. He has also been taking Florastor, which now I have read may not be advisable?

Regarding the Gastroparesis, he was tested several years ago, and all was ok in that regard, but I know things can change in two years. I will have him have his doc consider that. The strange thing is that he would feel well in the morning, but if he even had a cup of tea, he would start feeling nauseous. Then, sometime during the day, he would start feeling better, even after a meal. Somehow I have the feeling that it's all microbiome related. He felt great on the antibiotics, and has ALWAYS felt better on antibiotics.

How I wish these kids didn't ALWAYS have to have this heavy weight on their shoulders.
 

my little penguin

Moderator
Staff member
So the thing to know about gastroparesis
Antibiotics make the gut move faster
The stomach empty faster and then intestines move faster (which both make you feel better if you have constipation and slow moving belly )

Ds takes erythromycin daily for his gastroparesis
Prior to meals
Sometimes he can skip a dose but then will pay for it later next meal will be harder to eat or be more nausea
Depends on the meals fat content fiber content
What he ate earlier how long between meals etc...
Ds rest was borderline but ees works for him so we use it

Plus formula
He drinks neocate jr orally 50% of his calories plus food
That balances things for him gut wise since his liquid emptying was normal

Good luck
 

Maya142

Moderator
Staff member
That might be Gastroparesis...though typically liquids are more easily tolerated than solids with GP. So if he has a meal, does he feel nauseous after? Another symptom is early satiety - feeling full after a few bites. My daughter would get nauseous after even a couple of bites but was fine if she did not eat, so often she chose not to eat (which led to severe malnutrition and several admissions).

How long before you get the results? I was surprised that she was put on vancomycin and subsequent others for two week periods with slow tapers. N was put on it for two months, taking it 4 times per day! He does not have diarrhea...quite the contrary.
Has N had C.Diff before? We did do Vancomycin 4 times a day but only for 2 weeks at a time. Sometimes if the patient has had C.Diff before they do long tapers...but we have consulted 3 GIs about C.Diff and all followed the same protocol - 2 weeks of abx and if you've had it before more than once, a long taper. We even talked to an infectious disease doctor who said he sometimes keeps patients who keep getting C.Diff on abx indefinitely - but again, it would be Vancomycin or Dificid once every 3 days.

I guess different GIs treat it differently? But I'm really surprised they kept him on it that long if he didn't have diarrhea. How did they test for C.Diff? Did he have diarrhea when he was originally dxed with C.Diff?
 
omg.......this worries me no end. I wonder if the doctor did 2 months instead of 2 WEEKS by mistake! The way they found he had c-diff was immediately after his colonoscopy. They must have taken a sample right then and there, because within a day, they said he had c diff. All his biopsies came out normal so it wasn't anything they saw. The doctor also said that some people just always have c diff but that it is not necessary to treat unless they have symptoms. I was actually surprised when they said he had it, because his symptoms his very first time were diarrhea, bad smell, blood.....this was only a couple of weeks after his resection. But Nico said that it felt the same as when he had c diff..... It is also possible N didn't describe his symptoms well to the doc. That's why I told him this time to tell him several times that he didn't have diarrhea! I had told myself that I was going to trust his doctor and not try to second guess him as I did his other docs, because I used to drive N a little crazy, but I think I am going to start again....it's just a little more difficult since N lives far from home now!

"So if he has a meal, does he feel nauseous after?" Not necessarily....sometimes meals sit well. He seems to feel his worst in the morning, after his first meal or drink (usually tea), and then it gets better as the day goes on. I have not asked him if he is getting full quickly....I have the feeling he has been keeping his meals smallish.

Thank you for the GP/antibiotic info MLP! I had no idea that a/bs affected motility or that they were actually used indefinitely for this. This is for sure something we need to look into. N was on low dose flagyl for over a year because he felt better on it, but then the doc was concerned about him being on it for so long. What did you mean by "Ds rest was borderline?" And what is ees? What is his dosage of erythromycin? You have always been so amazing about keeping on top of his nutritional needs! I hope that he is doing well overall! N drank unflavored Pepetamen for several years, but once he left for college, he stopped that and started drinking something called Soylent. He would drink just that during the day, and then ate regular food once he got home. At some point, he stopped that too and then somehow, his last year in college, he started being able to eat just about anything and gained 20 pounds. He actually said the other day that maybe he would start drinking part of his meals again.

I can't thank you both enough....you deal with so much with your own children and are so generous imparting your infinite knowledge and support to the rest of us. I am always so confused and feel I did so many things wrong that I never feel I know what is right/true/best! You clear things up.
Many thanks again
 

Maya142

Moderator
Staff member
The way they found he had c-diff was immediately after his colonoscopy. They must have taken a sample right then and there, because within a day, they said he had c diff. All his biopsies came out normal so it wasn't anything they saw.
Did they take a blood sample? I would guess they must have done a C.Diff test, unless they test the biopsies for it? Have you seen the scope report? We always get one, with pictures.

The doctor also said that some people just always have c diff but that it is not necessary to treat unless they have symptoms. I was actually surprised when they said he had it, because his symptoms his very first time were diarrhea, bad smell, blood.....this was only a couple of weeks after his resection. But Nico said that it felt the same as when he had c diff..... It is also possible N didn't describe his symptoms well to the doc.
This worries me a bit because people can be colonized with C.Diff and not have an actual active infection. They can actually do tests to see if a prson has active C.Diff vs. whether they are just colonized with it. Remember that most people has some C.Diff bacteria - that's normal. It only becomes a problem when abx wipe out other bacteria, which lets C.Diff flourish.

M had C.Diff in November and she felt better after 2 weeks of Vancomycin. Continued to have diarrhea but less watery, not foul smelling. And sometimes had semi-formed stools. Her GI re-tested her and the test was positive. I spoke to her GI after that result, saying M wasn't feeling as sick as last time and that she even had semi-formed stools. She then told me that you can be colonized with it without having an active infection, which means that positive result is essentially a false positive.

She told us there was another test that looks for the toxin C.Diff produces. If the toxin is present, then it's definitely an active infection of C.Diff. In M's case, it was present and she was then treated with Dificid.

Based on N's symptoms, I'm wondering if he had C.Diff in the first place or whether he was just colonized with it? So he says he did have diarrhea when he had C.Diff this last time? Was it watery or foul smelling? My daughter has had C.Diff so many times that even I notice a change in the smell.

This is for sure something we need to look into. N was on low dose flagyl for over a year because he felt better on it, but then the doc was concerned about him being on it for so long. /QUOTE]

Certain antibiotics are used for Gastroparesis. Erythromycin and Azithromycin are most commonly used. M took Erythromycin too (brand name was EES) and it helped her for a while. The issue with EES is that the body gets used to it and it becomes less effective over time. There aren't a whole lot of meds for Gastroparesis, so some patients do a 2 weeks on, 2 weeks off schedule of EES. That way they continue to respond to it. We tried that but M got way too nauseous without it...she'd even throw up formula!

What did you mean by "Ds rest was borderline?" And what is ees? What is his dosage of erythromycin? You have always been so amazing about keeping on top of his nutritional needs! I hope that he is doing well overall! N drank unflavored Pepetamen for several years, but once he left for college,[
So to be diagnosed with Gastroparesis, you need to have more than 10% of the meal the fed you left in your stomach 4 hours after eating. Typically they use eggs and toast. MLP's son was borderline since he had 13-14% of his meal left after 4 hours. My daughter has what is considered moderate Gastroparesis and had 37% of her meal left after 4 hours.

M, as you may know, required a feeding tube to ensure that she was getting enough calories and nutrients. Even though she is on Domperidone which is approved in many countries but not the US. I'd encourage formula, if he'll consider it. He could add chocolate syrup to the unflavored version to make it more palatable.

And he should definitely tell his GI about the nausea!!
 

my little penguin

Moderator
Staff member
Ds gastric emptying test for solids was borderline
Meaning he had more than 10% solids left after 4 hours (14% I think 🤔)
But does better on erythromycin (ees is a version of erythromycin that is granules. -has to be the liquid version through not pills )
 
I agree with you, that he probably did not have c diff this last time (when he was treated for it for 2 months!). He did not have diarrhea at the time. And he doesn't this time either. I don't know if they took blood when the did his scope, and I'm not sure where or how they tested for the c diff unless they got a sample of residue from his gut during the scope. The biopsies were all normal. His very first time with c diff, right after his surgery, he was a mess, with all the typical symptoms. So I guess this doc might have treated unnecessarily (and aggressively!!). I hate that I cannot trust this doctor anymore. I didn't like his last one either (when he went off to college) and he did not like my interfering. For example, I had asked if he could do bloodwork at least twice a year to check inflammatory markers, and Hgb levels, since those have been indicative in the past (and he was feeling poorly and weighing 95#), and also asked about doing biopsies during his colonoscopy. He said no to both and avoided talking with me. I was hoping this doctor would be different especially since his specialty is IBD. At least now I know that I will have to look more closely and ask more questions if N needs more treatment.

He did tell his doc about the nausea, and he prescribed Xifaxin. After one day, he says he feels a lot better. They also tested him again for c diff, but you can bet I will question the results if it comes out positive!! If he starts feeling poorly again after his course of treatment, I will encourage him to get tested again for gastroparesis.

Thank you again for all of your input and information....it has been a huge help!
 
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