7 mos in, low-grade relapse or IBS?

Please limit your post to questions only. You can ask multiple questions in the post. (One post per person per day about yourself. See exception in General C. diff.Discussion.)
Believe
Regular User
Posts: 33
Joined: Tue May 08, 2018 1:46 pm

7 mos in, low-grade relapse or IBS?

Postby Believe » Sat Dec 01, 2018 7:53 pm

Hi there! I’m sorry the length of this, and thank you for your patience if you do read through. I thought it might be most helpful to fully describe my situation. It has been a long time that this letter to the wonderful souls in this group has been accruing in me ...

I had sincerely hoped to write about 6 months post-Vanco that all was healed, wanting to provide encouragement to other new sufferers. But now, I’m not sure what’s going on, I’m terribly worried, and I think I still need encouragement myself!

I’m 7 months post. I had a mild case of c.diff last spring. It’s great it was mild, but the problem is it’s hard to tell with a mild case if symptoms warrant retesting, or not. After two rounds antibios (Flagyl and then 10 days Vanco), I cautiously thought I was healed, just suffering on/off post-IBS with sensitivity to all the usual suspects (like caffeine, chocolate, dairy, a heavy meal, raw vegs). Believe me, I used to have an iron belly, and kept a chipotle shaker beside my salt & pepper. (Honestly though, I suspect I had just an on/off bloating IBS for years.)

First, I should point out: we never retested. My PCP said, “you don’t want to go down that road” and that my symptoms sound like “normal IBS” as part of recovery.

Now, I’m not so sure, and have to wait and try to keep the faith. I had D twice today, and I’ve been on shaky ground a lot over the past few weeks. My gastroenterologist on call said to wait and give the Pepto Bismol I started taking a chance to work, and call his assistant come Monday. He said if I improve, but slide backward again next weekend, he agrees I should definitely be tested.

Over the past 7 months, I will go happily for a few weeks at a time with little to no trouble, being generally careful with eating, but over these past few weeks, I’ve had a lot of gassiness, bloating, and the occasional bout of D. (Yes, I did eat too much and the wrong things at Thanksgiving! And have felt “off” all week to follow.)

This has been my routine (ha, of denial): to behave myself and eat bland, feeling ‘well’, but then get cocky and slip back into old habits like decaf or a little chocolate, dairy or sugar, wine or a heavy meal. Then, I’d start feeling slight occasional cramps sneak in, along a little sense of urgency (but still mostly normal BM) over a period of a couple of days, until I’d finally have a bout of D. Then, I’d reel it in and do 2-3 doses Pepto Bismol, start up taking peppermint pills, severely dial back my eating to bland and light again, and recover over about 3 days. As I’d improve over those few days, the bloating discomfort would improve to just flatulence (no smell, and at least the gassiness was moving), and finally, the flatus would cease on day 3 or 4.

Does the above sound familiar to anyone? I’m thinking this is typical IBS, a 3 or so day rough period?

Then, restored and belly calmed, I’d feel good again, and behave myself for another few weeks, until I let a few tiny bites of old habits slip back in, and then the crazy routine would start all over again. When, when will I learn? Lol.

Sometimes, I would go quite some time feeling well ... mostly, I thought, because I was behaving myself. Sometimes, I can’t quite pinpoint the culprit.

As the months went by, and the further away I got from the c.diff, the more confident I felt these episodes are just an IBS attack. An attack of D wouldn’t rattle me as it initially had.

But these past two weeks, I’ve had trouble a few times. Admittedly, I didn’t stick with my reformed good behavior long enough in-between my brief descent into loose stools. (For example, I can’t remember what I ate to cause bloating and crampiness the other day, but admit I had caused myself discomfort via Thanksgiving indulgence the week before, and had not probably allowed enough recovery time.)

Last night, I wasn’t feeling great, but I still met friends out very briefly, only drinking seltzer with cranberry juice and lime, and a small portion of mashed potatoes (trying to pick around the no-no fibrous bits of skin, but still unfortunately eating a little bit of them, ugh) along with soft cooked, sautéed carrots and a small amount of broccoli. Could just a little well-cooked broccoli actually cause trouble??

I had tiptoed over these past two days, feeling like I could easily risk a bout of D. Or so I thought.

I even felt great when I awoke this morning! But then, all hell broke loose midday. I don’t know what I did wrong? I ate light, just one piece GF toast with Earth Balance and a piece of crushed raw garlic (delish, and usually makes me feel great), a little bit of GF crackers and GF noodles, a cup of chicken bone broth with miso, and a banana.

But I grew rumbly. I got cramps, and after guzzling a big glass of water, grew urgent and had 2 little bouts of D. I almost cried, thinking “it’s back.” I’m now on the couch, doing a few doses of Pepto Bismol, and vow to only sip liquids for a couple of days! No food. I’m becoming scared of even GF crackers.

Wracking my brain why the past few weeks have been a bumpy ride, like a slow descent ...

Questions:
- Maybe, just maybe ... could it be that I bought a few tins of Trader Joe’s peppermints at the checkout, and have been binging on them? On top of taking peppermint pills? Could peppermints cause trouble? It’s not like I’ve been eating a tin a day, but maybe 10-12 a day, on top of the pills ...

- I’m starting to feel really hungry sitting here. If you had active c.diff, would you even feel hungry at all? I think the disease kills the appetite, correct? I’m thinking maybe hunger is a good sign?

- I thought I read Pepto will not stop an active c.diff infection, but my gastroenterologist said it will ‘slow it down’. Hmm. Confused how much ‘relief’ one can truly obtain from doses of Pepto. It seems to be helping a little (it’s still early dosing), as usual, but now I’m too nervous to eat.

- Can you really relapse 7 mos into recovery? I thought passing the 3-month mark without incident was pretty much indicative of being safe from relapse?

- Finally, wouldn’t one grow progressively sicker over time, if there were a low-grade, active c.diff infection? I look and feel healthy otherwise.

Thank you so kindly,
k

AllisS
Long Time Contributor
Posts: 1889
Joined: Fri Sep 07, 2012 10:52 pm

Re: 7 mos in, low-grade relapse or IBS?

Postby AllisS » Sat Dec 01, 2018 8:22 pm

It's very difficult (as you surmise) to read, process, and respond to a post that is as long as this. Please try to limit future posts to a paragraph or two, comprising only a few sentences each. Thanks! (In advance.)

It sounds to me as though you're experiencing some food sensitivities, likely due to IBS rather than C. diff. I can't weigh in on whether your doctor's idea of retesting makes sense or not; however, C. diff treatment should always be based on symptoms rather than a test result, and since your symptoms do not sound like C. diff my guess is that retesting could do more harm than good.

There is no specific diet, post-C. diff, that would either cause or prevent a relapse. It all depends on what you, as an individual, can tolerate. Anything eaten in excess has the potential to cause GI (non-C. diff) problems. Peppermint can sometimes be an irritant, so you may want to try cutting back.

The question about whether C. diff kills the appetite is kind of unanswerable. Appetite can fluctuate regardless of whether C. diff is present (which, again, in your case, sounds unlikely).

A new C. diff infection seven months past the original infection wouldn't be a relapse; it would be a new infection.

I don't know if one would become sicker over time with low-grade C. diff or not; my guess, however, is: not necessarily.

You may want to get an opinion about your GI issues from another doctor, either a second GI physician or a C. diff specialist.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Believe
Regular User
Posts: 33
Joined: Tue May 08, 2018 1:46 pm

Re: 7 mos in, low-grade relapse or IBS?

Postby Believe » Sat Dec 01, 2018 8:30 pm

Thanks you, Allis, my apologies ... I really should have written sooner! My questions had been building up for a long time. Good advice

Believe
Regular User
Posts: 33
Joined: Tue May 08, 2018 1:46 pm

Re: 7 mos in, low-grade relapse or IBS?

Postby Believe » Sat Dec 01, 2018 8:49 pm

I think I understand: even if a person were to test positive, they should not be treated unless severely disabling symptoms are present? Is this what it is to be an asymptomatic carrier?

sammyp
Contributor
Posts: 90
Joined: Thu May 24, 2018 2:08 pm

Re: 7 mos in, low-grade relapse or IBS?

Postby sammyp » Sat Dec 01, 2018 9:15 pm

Hi there! I will try to weigh in on a few of your questions. I may miss a few since your post is on the longer side.

First, your doctor is right not to test unless debilitating symptoms are present. Over testing is causing over treating which bad news. People can test positive long after symptoms recede. If you do test, make sure you know the results for both your antigen and toxin tests - a positive antigen and a negative toxin indicates inactive CDiff and you'd be considered a carrier. That being said, I'd listen to your doc and not test unless your symptoms rev to uncontrollable levels.

To me, everything you describe sounds like IBS. And yes, you can still have IBS issues 7 months out. It takes people a long time to heal. D can be caused by literally anything - a risky food, a stomach bug, eating too much, eating too fast, stress, etc etc. The only reason your mind immediately goes to CDiff is because you've had it and you're scared of it. Prior to CDiff, you likely wouldn't have thought twice about and episodes of D.

For what it's worth, I think you're right to not be on a strict bland diet this far into recovery. You should be trying to branch out and expand your diet and live life again. I also think you're right to switch to bland or go on bowel rest with liquids only when you've overdone it and have D. But all of what you're experiencing sounds related to food, overindulgence, etc which would be IBs, not CDiff. With CDiff you would have symptoms regardless of what your ate or drank. It is not food dependent. There is no food or drink that can cause a CDiff relapse short of getting food poisoning and upsetting your gut flora. And that's not likely. My ID doc told me that symotoms that are related to food (and keep in my that food can affect you up to 72 hours after you ate it, not necessarily in hours or a day) is IBS and symptoms that do not stop and get worse is CDiff (or another GI bug that would require testing to rule out pathogens or bacteria).

You're eating way too much peppermint. Check the ingredients on those trader Joe's mints. Do they have an artificial sweeter? If so, toss them. Artificial sweeteners are terrible for our guts post CDiff . Also, peppermint is a muscle relaxant that can soothe the gut but overdo it and it can also stimulate the gut. Moderation is key to everything in life, peppermint included :)

Pepto is a good choice. It doesn't bind you up like imodium which can be dangerous with CDiff and has been shown to help against CDiff by binding the toxins and allowing then to exit the gut more effectively. Google for research, it's really quite interesting.

I'd talk to your GI doc about IBS specifically and see what can be done to mitigate that. They make enzymes for gas (Beano) and have antispasmodics that could help with cramping. You may want to start a food journal to see which foods in particular are triggering you because it seems like something is. And it may not even be food but overindulgence or eating too fast which can also have an affect on IBS.

Also, if you did have CDiff again (I don't think you do), it is not considered a relapse this far out but a new infection. Highly unlikely unless you've been on antibiotics recently.

Best of luck to you. It's a hard fight with lots of anxiety. But it sounds like you're in normal recovery.

Believe
Regular User
Posts: 33
Joined: Tue May 08, 2018 1:46 pm

Re: 7 mos in, low-grade relapse or IBS?

Postby Believe » Sat Dec 01, 2018 9:54 pm

Many kind thanks, Sammy! Very reassuring words, and very sensible.

Indeed, I shall reach out for medical support next week, and gain control over the IBS. I’ve recently read that acupuncture and chiropractic can be of help, also. Beyond the microbiome rebalancing taking years, I wonder if the brain-gut wiring hangs onto a wacky alarm signal? Thanks again!


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: Google [Bot] and 30 guests