New member with both IBS and C-Diff

[Judy M.]

I'm new here, and this is my story and my questions:

I was "diagnosed" with IBS about six years ago. I put "diagnosed" in quotes because it seems that IBS is kind of a last-resort diagnosis when nothing else can be found. I had not been on antibiotics, nor had I been hospitalized, at that time.

Three weeks ago I had endoscopic surgery for a Zenker's diverticulum, following by invasive surgery to determine whether there was a leak after I had severe shoulder pain. No leak -- but the possibility had to be eliminated. I ended up in ICU for three days and in the hospital for seven for what was supposed to be an overnight "visit." I was put on clindamycin (need I say more?) and within five days developed severe D. I asked to be tested (although I didn't know what for!) and was told that the D was probably just a result of the antibiotic. Perhaps had I been familiar with C-Diff I would have pushed for a toxin test, although I don't know how quickly it shows up in a test.

When I returned home, I called my gastro doc, who ordered "the test" and I tested positive. I am on 250 mg. Flagyl four times per day, in addition to Flora-Q once a day, which I take as far from the Flagyl as I can. I will have been on Flagyl and Flora-Q for one week tomorrow. I'm down to four bathroom trips per day (two after breakfast and two after lunch), and it's hard to know whether that's still a result of the C-Diff or perhaps just typical IBS symptoms.

So . . . here are my questions:

1. Since I already had IBS, will I know for sure that the C-Diff has been "cured"? My IBS seems to run in cycles, and I take Imodium when things get bad.

2. I've read in this support group that some doctors OK the use of Imodium with C-Diff. Is there more info I can get about that? My concern is that I will relapse with C-Diff and not know whether it's C-Diff or IBS and therefore not know what to do! I also read about Pepto tablets. Is that a better idea?

3. I've also read that some people with IBS have very good results when they are treated for C-Diff -- i.e., apparently they had C-Diff in the first place(??). Is that particularly common or very unusual?

4. My husband has had IBS symptoms since January. I asked to have him tested for C-Diff even though we have no reason to believe that he is/was high risk (i.e., he hadn't been in the hospital or on antibiotics). However, it seems kind of strange that he developed the same symptoms I have . . . and who knows? He has also tried removing dairy from his diet, but that doesn't seem to be making a significant difference. Any comments about this?

Thanks for being here. What I have read has been very helpful. And I appreciate any assistance you can provide.

[Christina]

Hi and welcome to the site. So sorry you are having to deal with this as it most certainly is not fun. There lots of good info. here if you search around. Especially, in FAQ's and there are several articles written by C-diff experts which help to explain C-diff and it's treatments.
I was not diagnosed w/ IBS prior to C-diff but I guess looking back even as child I did have stomach issues similar to what is going on now. I have been diagnosed now w/ Post Infectious IBS after having C-diff for 17 months. I can only say if what I had prior to C-diff was in fact IBS then it has gotten extremely worse since having C-diff but, around here everyone reacts to pretty much everything differently. I don't know if you can find printed info. on using Immodium w/C-diff. It seems that every Dr. has their own opinions on it. Mine OK'd it but I was always worried so I used Pepto instead. Pepto has some anti C-diff properties so I felt for myself that was a safer choice. I'd check w/your Dr. about what he/she recommends.
If you have the classic symptoms of C-diff like I did then you will definitely know when you are "cured". Although IBS feels similar, there really are noticeable differences.
As far as your husband, maybe I'd ask him to be tested just in case. Even though he could get C-diff from you as long as you use proper hygiene and use bleach to clean your home chances are he will be fine. I live w/ my husband and two young children and nobody here wound up w/c-diff after my long bought of it.

I wish you well soon and please keep us posted as to your progress.

Christina

[Judy M.]

Hi and welcome to the site.

Thanks!

There lots of good info. here if you search around. Especially, in FAQ's and there are several articles written by C-diff experts which help to explain C-diff and it's treatments.

Yes, I was thrilled to find such useful info!

I can only say if what I had prior to C-diff was in fact IBS then it has gotten extremely worse since having C-diff but, around here everyone reacts to pretty much everything differently.

I gather you have now tested negative for C-diff???

I don't know if you can find printed info. on using Immodium w/C-diff. It seems that every Dr. has their own opinions on it. Mine OK'd it but I was always worried so I used Pepto instead. Pepto has some anti C-diff properties so I felt for myself that was a safer choice. I'd check w/your Dr. about what he/she recommends.

For the IBS, my doctor recommended Imodium. Of course, now we have this new wrinkle. I am going to check with him about the Pepto, especially in light of the C-Diff.

If you have the classic symptoms of C-diff like I did then you will definitely know when you are "cured". Although IBS feels similar, there really are noticeable differences.

Initially, yes, I found that they were very different -- primarily because I was on IV and liquids. As of this moment, one week into treatment, I would say I'm having my usual IBS symptoms -- but I'm not taking anything, which means I have to be careful about when I leave home. For example, I had to postpone a doctor's appointment that was scheduled for 1 p.m. -- right after breakfast or lunch is *not* a good idea!

As far as your husband, maybe I'd ask him to be tested just in case.

We've done that. The gastro doc wouldn't test him because he hadn't seen him for 2 1/2 years. But our internist was willing to order the test. Hopefully, we'll hear later today.

Even though he could get C-diff from you as long as you use proper hygiene and use bleach to clean your home chances are he will be fine. I live w/ my husband and two young children and nobody here wound up w/c-diff after my long bought of it.

Do you clean with bleach, etc.? I haven't been doing that, but I must admit that we're both very careful about using proper hygiene and rarely share any "diseases." I do know that C-Diff can't necessarily be compared to other conditions.

I wish you well soon and please keep us posted as to your progress.

Thanks for your good wishes. What's making this especially difficult is that we are making a long-distance move at the end of June, and flying in early June for a new-home closing. I have to know I have something to fall back on when we fly. Normally, if there's any question, I take an Imodium before we leave.

Christina[/quote]

[Christina]

Yes, I clean/cleaned my entire bathroom w/ bleach even light switches and door knobs. I also washed and kept my dirty laundry separate. The most important thing is handwashing w/ plain old soap and water (not antibacterial). Antibacterial soaps will not kill the spores therefore, plain old soap is recommended as antibacterial products can rarely lead to bacterial overgrowth and resistance. I only use antibacterial gels etc. if plain old soap and water is not available.
As far as flying, try not to be to concerned. I flew about 11 times w/ active C-diff to get to my Dr.s' office sometimes even hours before a relapse. Although, it was stressful at times it can be done. I took my Vanco on the plane and if things got "iffy"I would take a bunch of Pepto. Once while relapsing I got myself there by taking 3 Pepto's and 2Bentyl. The Dr. couldn't believe what I did but I knew I had to get there.Only once in 11 times did I have to use the restroom on the plane.
You'll be fine.

[Sheila1]

Judy M,

Cdiff can seem like IBS many times, but for me, I always had "the smell" from Cdiff so knew the difference, plus a few other symptoms that I don't have with IBS.

Check with your doc, but I think most doctors mainly don't want immodium or pepto used if it halts progress, with very active cdiff it doesn't usually halt the progress, just reduces the number of bm's a bit. You don't want to stop the body from flushing out the bacteria, but, for instance, my doc said okay so long as it didn't work "too" good.

Having IBS in the first place? Well, in my case I had low grade community acquired CDiff and was misdiagnosed with IBS. I wasn't tested for cdiff - didn't know what it was until I took an antibiotic a few months later and ended up in the hospital with pseudom. colitis. The odor was the primary clue and a few other things, but the odor was unforgettable and unmistakeable and I'm absolutely certain that's what I had the previous fall but my body got it under control by itself at the time.

Sudden IBS symptoms would be suspicious to me - that's how mine started. But again, my body was able to overcome the problem by itself until I took antibiotics (a prophylactic antibiotic prior to surgery that I didnt' even know I'd been given). It took about 4 months to overcome the 1st bout of cdiff on my own and during that time I was using Bentyl for cramps and Prevacid for the upper abdominal bloating and indigestion, etc.

If you truly suspect cdiff with your husband, he should avoid antibiotics for as long as possible; I was given the antibiotic 6 months post healing from the mild cdiff "IBS" (almost a year from first IBS-like symptoms) and got deathly ill. Keep in mind that very low titres of cdiff toxin may not test positive, a negative test doesn't guarantee a true negative. If you both truly believe he has cdiff and a toxin test comes back negative, you can request a culture (see Testing in FAQ).

CDiff doesn't often spread in families, but it can. None of my family got it, but then none of them have taken any antibiotics either, so we don't really know for certain. I knew nothing about the hygiene part of cdiff for the first couple weeks, not until I found this site, so I wasn't extra careful about the bathroom knobs and handles during that first period, but I was careful about washing my hands.

Hope you are feeling better - do keep us posted.

[Judy M.]

Thanks, everyone, for your input.

1. My husband tested negative. So now we have to determine what's going on with him! He eliminated dairy -- that didn't make a difference. He should probably now eliminate gluten -- that's a tougher one for him, as he loves all the gluten "stuff."

2. The Imodium/Pepto discussion is interesting. When I was in the hospital and the D first started, I reminded the staff that I had IBS and maybe I should take Imodium. (At that point I had no clue about anything regarding C-diff.) They finally gave me Imodium I believe it was four times -- it did absolutely nothing. So I'm wondering (and, of course, I would check with my GI doc) if I thought I was having a relapse of C-diff, maybe one dose of Imodium would tell the story. Typically, that gives me a break from the IBS -- but obviously not from the C-diff.

3. As for traveling, I have enough trouble with the IBS! On a recent flight, I was almost in tears because there was a line for the bathroom. I'm particularly concerned because we will be flying in approximately four weeks. I just hope I know what's happening at that point!

4. While the odor may be a little worse, I can't say that it's bad enough for me to know the difference between C-diff and IBS.

All in all, my C-diff symptoms are apparently not as bad as those of some others here. I'm just feeling overwhelmed because we're flying in four weeks and doing a long-distance move in six weeks. It's bad enough that I had two surgeries (including general anesthesia and intubation for both) only three weeks ago.

Thanks for your responses!

[Nancy1]

Judy M,
I did a lot of flying when I had cdiff because both my father and my sister died in West Virginia during that time. If there is a line for the bathroom, tell the stewardess that you have an emergency. I wear a medic alert bracelet (it says "cdiff, no antibiotics") and this can help with a stewardess. Another thought is that you can get a note from your doc. You might try telling the stewardesses before the plane takes off, so they know in advance. I also took diapers (as a security blanket!) but never actually wore them. Moving and flying with cdiff, not to mention recovering from surgeries, whew! You have had way more than your share. Good luck.