Hopeless..Please Help

[Martini]

I have been browsing this site since early July. I am a 45 year old male and was diagnosed with CDIFF in July. I have had mild IBS in the past, but after taking a round of antibiotics in June started having watery bowel movements that persisted and got worse. I went for a colonoscopy and endoscopy and everything was fine. Finally I was admitted to hospital and tested positive for CDIFF. I was prescribe 10 days of Vanco and sent on my way. After the Vanco things slowly got better, however my symptoms came back in early August and I tested positive again using the Genesis Labs test. Both the PCR and Toxin test were positive. My GI and ID doctor put me back on Vanco at a higher dose for 14 days. After completing that course in late August, my stomach felt great for about 3 weeks. I had no symptoms. In fact my stomach felt better than it had in a very long time. Unfortunately, over the last month or so the symptoms have slowly crept back into my life. My stomach and movements are all over the place and I have not had any normal movements in several weeks. Typically I will have a small movement in the morning and then after eating lunch I will have an attack of WBM. This is usually within like 20 minutes after I eat. Sometimes I wake up with horrible D in the morning. This has left my rectum feeling very irritated and painful all day long. I am tired all the time and lacking energy. ALso, for some reason I find myself urinating much more frequently since this started. My doctor retested me a few weeks back and it gave back PCR positive but negative for toxin. He told me that he will not treat test but only the symptoms. So if its gets bad I will need to go on Dificid and see what happens. Potentially I will need to have an FMT after the Dificid based on what happens to my symptoms. At this point I am unsure what to do an need advice. Should I take the Dificid or will it make my situation worse? Does this sound like my IBS is just getting worse and I need to give it time? What scares me is that in the past I would take Imodium and it would calm my stomach and stop the WBM but that is not working anymore. I have small kids, one with special needs, and a great wife. I feel like I am letting everyone down at this point because I have been so sick the last few months. I have just not been able to string together enough good days in a row to make me feel like things are getting better. I am currently only taking probiotics and Imodium as need. I have cut back on my diet and lost almost 25 pounds.

[Rusty S]

Pardon the pun, but to inject a little humor since we're all recovering from this: C Diff's a real painus in the anus to deal with.

I'm sure if you've been browsing the forum for a while you already know the prognosis, but in short, it's typically...
1. Acquired infection from the community or while under some sort of medical care.
2. Test positive and treat with antibiotics that, ironically enough, drastically reduce biodiversity and quantity of healthy gut flora making you susceptible to infection and GI upsets (including C Diff, again).
3. Feel better while on antibiotics and briefly after, but start having waves of GI symptoms that go on, and on, and on, and on, and on, and on.
4. Recovery follows 80/20 rule: 80% of feeling better happens within the first 20% of the recovery time... though the recovery period to baseline is ultimately *a few years*.

I don't quite know if I'd take Imodium with a GI infection. It'll prevent you from... expelling the bacteria. I, too, lost 25lbs, FWIW. I also had brain fog, felt feverish, had loose orange stools, passed mucus, and felt perpetually... unsettled. Once you take antibiotics for it, you can still test positive... the "disease" is based on your reaction to the toxins. It's tricky. Additional antibiotics slow the return of the good bacteria, from what I understand, though Difficid less so than Vanco, and Vanco less so than the now-antiquated Flagyl.

[AllisS]

Hi Martini, welcome to the site. When you have a chance, please read our guidelines for all new posters; they're in the first thread on the introductory page.

Your doctors are correct in treating symptoms vs. test results. I'd follow their advice on whether or not, and when, to try Dificid. It can be hard to distinguish IBS from C. diff at times. If you do have C. diff, Dificid wouldn't make the symptoms worse. If it's IBS but you take Dificid, thinking it's C. diff, my guess is it simply wouldn't help, not that it would make your situation worse.

As for the more frequent urination, have you been tested for UTI? Be careful, however, that no doctor tries to prescribe an antibiotic on the basis of unidentifiable "bacteria" in the urine. There have been articles in the media recently about the overtreatment of UTIs with antibiotics in the absence of any specific organism being identified on culture.

For rectal itching and pain, there's a good OTC cream called Desitin that a colorectal doctor recommended to me. He said it's safe to use on a continuing basis as needed, whereas some prescribed creams should be used only short-term.

You didn't mention how often you're taking probiotics. You might try cutting back to see if that helps the D; some people don't tolerate probiotics well. And, contrary to popular belief, there's insufficient data, so far, showing that they actually help.

[OCmama]

Dificid is targeted specifically to C. diff, it kills the bad guys and leaves the good guys intact so that they can repopulate and win over any leftover bad guys.

I was "cured" with Dificid and had no weird side effects (3 years out)

Also I had terrible urgency and frequency of urination while on vanco and for awhile after, for me that stuff was awful.

I hope you feel better soon!

[georgina]

You might wanna replace the Imodium with something like Pepto Bismol or a binding agent like Questran.Pepto Bismol is a better option since it has some antibacterial properties.

[NanciT]

I want to add a few things, only you and your GI can decide if you need further treatment. The side effects of most of these medications we use can last a long time.
On the site, we have had multiple threads about Vanco causing UTI symptoms, often without their being an actual infection.

Both Vanco and DIficid can cause Post IBS, I had both of these situations and responded to 100"s on the site over the last 5 years with similar. The difficulty is many are left with IBS symptoms and it can be very hard to decide if you are dealing with a relapse or IBS.

I found Dificid very easy to take and was on a taper dose, but it has taken years to recover. The IBS was terrible. I still have it but thankfully it is mild

I agree with the above, I would not take imodium, talk with your GI about trying OTC Pepto. It has helped many on this site

Wishing you the best

NanciT

[chinacherry88]

Hi there,
I was cured too by dificcid and was the only antibiotic that agreed with me. Metro was a nightmare and so was Vanco.
Recovery is never as fast as we expect but it not always takes so many years. For me it took a month or so to recover but it was the hardest month of the illness.
One day this will be just a nightmare to you and your family.
Please believe me.
Xx

[Martini]

Thanks for the responses. I am currently taking Florostar one pill at night. I found that the more I take the more upset my stomach feels the next day. I am also experiencing near daily brain fog, feeling fluish often and an overall lack of energy. I also think the Vanco caused me to have Tinnitus that I have not been able to shake off. I am so shocked to hear that some of you have had to deal with the effects of this horror for years. Just one question, am I wrong to think that just taking the Dificid and see what happens is a bad idea? My stomach is upset all the time, especially right after eating, but I am not running to the bathroom 20-30 days a day like when I first had this. Even in my relapse I was not running to the bathroom like the first time but was feeling incredibly bad (bodyaches, daily WBM, high temp, etc.), right now it seems to be one WBM a day and I go 1 or 2 times small flakes or very narrow stools and that's it. I have see others ask if your poop would take the shape of a cup if you were to go. In my situation when I don't have a WBM its is generally mush stools that fall into the drain part of the toilet and just take that shape. (Sorry to be gross and if its just TMI but this is what we all deal with). I have not had a normal formed stool for almost a month at this point which is odd because right after the Vanco I was perfect for 2-3 weeks. My GI doctor whom I spoke too last week is pushing me to take the meds because of how well I felt directly after Vanco and then to have it go down this way which he says is generally not normal unless you are having a relapse. He mentioned that perhaps I have a bacterial overgrowth and the Vanco knocked that down as well because of how great I felt right away. MY stomach felt the best it felt in 20 years. Is that what people experience in recovery or should I take the meds? Is it normal to feel great for a few weeks and then have symptoms that come back and stay for weeks? Put another way, does that fact I felt really good for a few weeks and now have not been able to see any improvement in almost a month mean that I should take the Dificid? Do appreciate all the help from you fine folks.

****So just to update this post, my doctor was able to get me into a specialist in the city, I live in NY, that specializes in CDIFF research and has done FMT. Not sure if I can say his name in the forum but we spoke for awhile and he examined me. He basically told me that he thinks it is really my IBS just taken up a notch and for folks like me it can take awhile to get to a normal baseline. He told me that he would stop the Florostar because for some people it can make the symptoms worse. He said that he thought taking the Dificid wouldn't solve the problem unless I am now dealing with SIBO, which my GI said is possible and why thing got so good and then went downhill slowly, in that case he thinks the Dificid can help but in all reality it would just keep coming back again. However, he didn't think that it would make me worse as Dificid is more targeted than Vanco which I tolerated ok. Basically, he told me that I need to wait for a few more days and call him back and see how it goes not taking the probiotic and see if that moves the needle. Once we get into next week if there is no change we will start looking into IBS meds and testing for SIBO and if it gets worse possibly I should take the Dificid. I am so tired of all of this. My job is very stressful and I am supposed to be traveling and I can't because of my energy levels and how much my stomach hurts. I am luck to have a great wife and family but this has been a struggle and I want it to end so I can be a normal dad and husband. This may be TMI but I am so scared of my wife getting this we have not even been intimate in awhile. If anything happened to her I would never forgive myself. Sorry to be a downer but this sucks.

[Bobbie]

Yes, c diff does suck. Big time!! My younger son had it twice as a child,and I had three bouts many years later. The first lasted four years even tho I received immediate treatment from a GI.

I was able to tolerate
several antibiotics including a z pak several times. No guanantees however. All of my episodes were related to broad spectrum antibiotics.

Sounds as though you are in excellent medical hands, Hang in there. Recovery is sometimes slow - but it does happen. You will eventually be fine.

[roy]

Martini.
Please only use one membership name.
It is very frustrating when someone creates a new name and asks all the same questions over and over again.
Please dont waste the time of moderators who are often also sick themselves.
Most of them are a lot sicker than you are.

[Bobbie]

Martini/lunasdad,
We are willing to help you - but not if you are deceptive. Stop this!