Need help with Questions for Doctor

[ChrisD]

New to the site. I am a 44 year old male that was diagnosed with CDIFF in Early June. I was treated twice with 10 days of Vancomycin (I tested positive in July and was treated again). Each time my stomach started to feel better and then my symptoms came back. I went from having formed thin stools to the last 2 months having alternating mushy stools, usually 3-4 times a day or some days it is watery. Have not had my normal movement in more than 2 months. I am wondering if I still have the CDIFF and what I should do. Since my diagnosis I have lost a considerable amount of weight. My diet has been very basic since May and to be honest my appetite is very low. The last time I spoke with my GI which was a month ago he mentioned that he could put me on a Vanco Taper or there was other medication he could try to knock it out. My last stool test in mid-September was positive for CDIFF but I really didn't want to take any more medication because my symptoms are not as bad as when I originally had CDIFF or my initial recurrence but I am not seeing any progress at all. My ID and GE were pushing retreating at the last appointment but I told him I wanted to wait a few more weeks to see what happens. From reading some of the posts on this forum I know recovery can be grueling. I have a follow up with my GI and ID (they work together) later this week and they have both been awesome. Was wondering what the forum thinks are the follow up questions I should be asking? Should I be tested again or should I treat with Vanco again or other meds? Can taking another medicine make this worse and prolong recovery (to be honest I am not sure this is recovery)?

[AllisS]

Hi and welcome to the site. When you have a chance, please read our guidelines for all new posters. It's the first thread on the introductory page.

The general rule of thumb is to not treat on the basis of a positive the result but rather on the basis of symptoms. It's unclear why your doctors re-treated you on the basis of the positive test result. Leaving that aside, your symptoms may be due to what's called post-infectious IBS, which many people suffer from following C. diff. If you were to be re-treated yet a third time, the medication to ask for would be Dificid. When you meet with your doctors, I'd raise the question of whether your symptoms are likely due to post-infectious IBS vs. C. diff. I'd also ask why they re-treated based solely (or primarily) on the positive test result. I'd be reluctant to have them do that a second time, though I don't know that doing so would actually interfere with recovery. It just might not resolve your symptoms if they aren't due to C. diff. Sometimes nutritionists can be helpful in addressing dietary challenges that are due to illness.

Hope you feel better soon.

[ChrisD]

Thanks for responding. Sorry if I was a little vague in my post. When I had my relapse I was having really bad symptoms very similar to my first episode. Although not as bad. WIth my first episode I gradually got worse over the course of a week until I was running to the bathroom 20-30 times a day and all night.The second time I waited 4 days and then took the test, we treated while I waited the test results and I was positive. I have pretty much been the same the past 2-3 months where my symptoms are not as bad as when I had my initial and recurrence, but I am still nowhere near normal and have not improved at all in that time period. I think my doctor is concerned because in his and the ID doctor experience there would be some slow incremental improvement but that is not happening. I will speak to my doctor about the other medicine you mentioned, I think he mentioned that in the past and another drug which I cant remember that he said is a "chaser". I take notes but sometimes I miss things. He did mention that some people have a tough time getting over this and you can get IBS for awhile, but I just do not seem to be getting better at all. Maybe I am just too much in my head about this. The medication you mentioned, I have read in some posts that taking any antibiotics can cause this to get worse, including over treating,is that the same for the medicine you mentioned?

[AllisS]

Dificid is a different type of antibiotic than the antibiotics that cause C. difficile. It shouldn't cause C. diff to get worse and it has a high success rate -- higher than Vanco. (Flagyl is no longer recommended as the first-line treatment.) But you should direct that question to your doctors; ask them what the downside, if any, might be if you took Dificid under various scenarios, e.g., if you still have C. diff or if you don't actually have C. diff but have IBS.

[beth22]

I agree that Dificid is the drug of choice. But, first, I would re-test. What type of test did you have? If it was only PCR, I would ask to have a positive PCR followed up by an EIA test to see if you are in fact producing toxins. A positive PCR does not necessarily indicate an active case. I was PCR positive for over two years and did not have D. I know that you do, but I would want to make sure. You might also ask for a regular stool culture to detect other pathogens. Some people, including myself, got another bacteria post c diff. I don't know if that is because our immune systems are weakened or what, but you might as well rule it out. Dificid targets c difficile specifically and is the least destructive to other flora. It also inhibits spore formation to a degree, which is also helpful.

[ChrisD]

Thanks too all of you. I have an appointment tomorrow morning and will ask my doctors about these items. I do remember that I was PCR and ESA positive the first 2 times I was tested for this. I am not sure about the last test will need to ask my doctor. This last test was also done at a different lab so am not sure what there protocol was. Wondering if anyone has experienced what I have as far as treating then being ok and then slowly going downhill to a point and then kind of staying parked for several months without any improvement? I know that anxiety can play a large role in this but it has been very tough the last 5 months and I just do not see it getting any better unless something changes. What that is, I still have no idea. Been trying to not let it interfere in my life but every single day is a struggle. I have to drag myself out of bed and around just to get thru a day of work. I have small kids and they see me sick all the time which kills me. My daughter makes up he couch for me every day so I can lay down when I get home, she is 5 and always ask me how I feel. It's miserable. As I read stories in the various forums I don't know how so many of you carried on with this for years. I do not thing I am strong enough to have this monkey on my back for much longer.

[ChrisD]

Sorry to post again..not sure if it is against the rules to post more than once a day. I was able to get the results of my last stool test online and it says that PCR was positive and the Toxin A B was negative. That was about 8-9 weeks ago at this point. At the time my doctor said wait and see if it gets any better, which it has not. I am meeting with my GI and ID tomorrow, has anyone taken medicine to help bulk up stools? I am wondering if my issue is not CDIFF but the IBS and maybe there is something I can take to make my stools firmer. About 10 years ago I started talking to my doctors about fiber and I took fiber pills and they made my stomach hurt, so I am not wanting to try that again. Maybe there is something you have used that I can ask about? I haven't had stomach issues in the past, just a few ulcers in my esophagus that I treated with Aciphex. That bothered my stomach for a few months but nothing serious. Also, I avoided certain foods. like egg plant and any soy because they have always bothered me, but other than that I have been pretty good.

[beth22]

Some people have taken cholestyramine (Questran) which tends to solidify stools and also carries out toxins. It is actually a cholesterol lowering medication - a powder that you mix with water and drink. It requires a prescription. I think there are also pill forms called something else. Also, there is a medial food for IBS called EnteraGam that also needs a prescription and is quite expensive (Questran is cheap), but there is a pharmacy that the manufacturer has where you can get it for much less. I would ask your doctor about these. Also, perhaps have a regular stool culture to see if you have any other bacteria.

[ChrisD]

So I just got back from the doctors office. Basically, they told me that the next round of meds they would try is Dificid as many of you said. Checking to see if my insurance will cover it. They did not want me to retest because they both believe in treating the symptoms not the test, which I have see on the forum. I explained to them that my symptoms aren't the classic CDIFF symptoms that I had with my first 2 bouts of this, but both of them said that mixed mushy and watery stools can still be active CDIFF OR IBS, it is just very difficult to tell the difference sometimes. I explained to them my current diet and there response was if you were eating normally you would probably be much sicker. At this point they have basically left it up to me to see if I want to wait it out or to try Dificid. I asked if it can make the situation worse, they said they did not think it would but there is no way of knowing. They cant know if Dificid only kills just the CDIFF while also killing the good stuff as well. Both doctors said it was "interesting" how positively I reacted too the first 2 rounds of antibiotics and how things slowly went down and settled into my current pattern. They said if I take the Dificid and it works then its the CDIFF and should it relapse again then they would move me into doing a fecal transplant. (MY GI DOES THEM). They mentioned a bacterial overgrowth and possibly the Vanco I took knocking it down but not curing it as well. So in a nut shell, it is up to me to decide how to proceed. This stinks really badly and on top of it I feel like I have a massive sinus infection. I usually take antibiotics for it and both doctors said absolutely not to take any antibiotics at all right now.

[beth22]

Dificid is better than vanco as it kills less good flora. Vanco actually did kill too much of my good flora and I got SIBO as a result. Did you ask about the Questran? That is not an antibiotic and it does help to bind up toxins.

[ChrisD]

I asked about the Questran, the doctors told me to wait a few more days to see what happens before taking any more medication. They mentioned some anti depressant medication at low dosage but it can take weeks for them to take effect. I just stopped all my probiotics so they want to see if that helps before making any further decisions. I was leaning towards making taking the Dificid but I am just not sure as I really don't want to get worse. I have missed so much work already that I really don't have the time to sit home for 10 days while I am on it (my doctor said that for some folks mid way thru the treatment the d can get pretty bad, he called it die off). So I am going t ogive it a few more days and see what happens. They were leaning more towards this being IBS though based on my positive PCR and negative Toxin screen. However I have lost 35 pounds so they were alarmed by that and did a blood test to see if I am lacking any vitamins or nutrients. They also said my other tests came back negative for other bacteria so that is a positive. I guess we just sit back and wait and see what happens. I guess I aw wondering if folks in the forum would treat or keep waiting it out?

[beth22]

I would probably not treat with an antibiotic unless it doesn't get better. I know probiotics can make symptoms worse. They did for me. I took Pepto Bismol and it helped me. It also has some antimicrobial activity. But, I would probably try the Questran since it takes out the toxins by binding them up. If that didn't work, I would consider the Dificid.

[ChrisD]

What amount of PEPO did you take and how long before meals? I take Imodium when its gets really bad which does stop the WBM, but the it always just goes back to mush. Also, did you find that your stools always have a burning sensation when passed (I am sorry to be gross), ever since this started it feels like I am on fire when I go to the bathroom or pass gas.

[CindyP]

Chris, I have had the post-infection burning with a BM. But, I attributed it to the fact that I had surgery for pelvic floor and a sphincteroplasty (which is how I acquired CDI - I was given huge doses of Clindamycin in hospital). I assumed the burning was from the sphincteroplasty.

Interesting. I wonder if others have this issue, as well.

My GI prescribed Proctocort (a steroid suppository) for this - it helps a little bit.

Also - I take Pepto for loose BM - two chewable after each episode, up to the max allowed per day. Be aware the bismuth will turn your stool black, and don't freak out. :)

[ChrisD]

So I have decided to bite the bullet and try the Dificid. The last 2 days have been pretty rough and I can’t stand it anymore. Please send good thoughts my way.