Relapse? Mild case, hard to judge

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Believe
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Relapse? Mild case, hard to judge

Postby Believe » Thu May 31, 2018 8:53 am

I have had a mild case, hard to judge, and am thinking I might have relapsed. Again. The unpredictable nature of this disease is harrowing. I’m trying to hang on, keep busy and believe it will be cured. But I’m losing faith. I feel like this is it: the new normal. Hiding out near home, being on meds, disappeared from life, barely keeping my head up with my work and family.

On Friday, May 11, I started 10 days 125 MG 4x day Vanco and finished last dose Monday, May 21. This was my second round of antibiotics. By 8th day of treatment, Saturday, May 19, had achieved a normal, solid #4 Bristol stool which continued for 6 days, then on the 4th day after stopping treatment, the return of either loose or very soft #4-5 Bristol scale stools, surrounded by fluffy bits. Mild cramps and bloat and gassiness. More Pepto-Bismol, more waiting to see. More existential angst.

It has been a week now of wait and see. I’m not better.

I’m suspicious because why on earth would a series of nice, normal stools at the end of Vanco go south 4 days after finishing? I do not want to abuse antibiotics and over-treat, of course. But neither do I want to be a fool and permit this monster to gain a foothold again. I’m aghast, and cannot imagine ever being able to beat this bug if Vanco and all those probiotics can fail me so quickly. Again. I’m scared and depressed.

Except for that one day last week of trying to do ground flax seed in a smoothie, I’ve been religiously keeping a bland diet and eating light portions to not tax the digestive system ever since.

Sound like a possible relapse?

Lisa33
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Re: Relapse? Mild case, hard to judge

Postby Lisa33 » Thu May 31, 2018 9:19 am

If it's not consistent, watery D with the urgency to go, it's probably not a relapse. You just finished meds, so it can take months before you see some normalcy with BMs. Most people actually have a new normal and never go back to how they were prior to c-diff. This illness is not black and white at all, which creates a lot of guessing and anxiety. It's hard to differentiate between relapse and IBS so early on in recovery. If it's just loose stool, you are probably ok. And if it's not persistent throughout the day, you are probably ok. Unfortunately, you do have to wait and see. It all stinks! But know that you will get better. There is a lot of posters on here that all eventually got better. So don't get discouraged.

-Lisa

Believe
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Re: Relapse? Mild case, hard to judge

Postby Believe » Thu May 31, 2018 10:54 am

Thank you kindly, Lisa for your encouragement! I really, really needed to hear that the many posters on here all eventually got better. And I hope to one day be part of that group, lending strength and hope from the other side as a survivor, giving back to those in need.

I understand post-treatment IBS can occur, and it can take months to see normalcy with BMs. But here's what is bothering me: for a number of days, I did achieve normalcy. My BM had improved to 100% solid and normal during treatment, and it even stayed that way for a few days following treatment. So I was doing great! But then it went south a few days post-treatment, and has remained loose all week (plus I've developed cramps and gurgling).

Last week, it was getting loose, soft and fluffy. Today was true D; it is a little worse than a week ago. My experiment with introducing the ground flax seed should not still affect me a week later ... I finally just caved and took Pepto-Bismol again.

Can this really happen - gaining normal BMs during treatment, only to fall apart post-treatment - and it not be a relapse? Has anybody experienced this?

Best,
k

roy
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Re: Relapse? Mild case, hard to judge

Postby roy » Thu May 31, 2018 11:18 am

Vanco kills active c.diff but it's a crafty bug and knows it's in danger when Vanco attacks it, a few bugs become spores and wait out untill the vanco is stopped before becoming active again.
Its then that the good gut flora and your natural immunity does it's intended job and mops up the remaining c.diff.
It's not surprising to get mild symptoms while that battle is going on but if you hit it with vanco again it hits the restart button and damages the good flora meaning next time you come off meds the relapse rate is even higher.
If the good flora grows faster than the bad c.diff is cured, if c.diff grows faster D returns.

Lisa33
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Re: Relapse? Mild case, hard to judge

Postby Lisa33 » Thu May 31, 2018 12:43 pm

What Roy said is exactly what I think went on with me after finishing vanco. To back up a little. I had c-diff in Sept 2014. I took a round of metronidazole (generic Flagyl). It seemed like everything was getting back to normal. But, two weeks later, it hit me again. With me, it wasn't a gradual decline. I was feeling pretty normal and BMs were a lot better. But the relapse came on quick. I was put back on the metro, but I couldn't tolerate it at all the second time around and pushed for vanco. When I finished vanco, it was very up and down, much like you describe. Mostly down though. I was sure I was relapsing again. But for some reason, it was really the morning hours that were awful. I would go several times loose, fluffy, sometimes D, but then the rest of the day, I felt really good. My doctor actually called in another round of vanco and retested. It was about 2 weeks after finishing meds. Something told me to hold off taking the vanco, as I really was having just bad mornings. My test winded up coming back negative, and as the weeks went on, I was seeing improvement. It was a slow process though. I think if the D really starts to kick in, then you may be experiencing a relapse. But if you are like a roller coaster with some good BMs, and then some not so good ones, it is probably the process that Roy is referring to - the battle of the good vs bad bacteria.

Believe
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Re: Relapse? Mild case, hard to judge

Postby Believe » Thu May 31, 2018 1:01 pm

Thanks, Roy for your helpful reply! Very clear, makes total sense. Yes, I’m thinking that in my case, the c.diff must have grown faster than my good flora, and that’s why the D has returned.

I get it about how we can stir up deeper trouble by hitting it again with more Vanco. Yet unfortunately, it seems now too late for my good flora to get a foothold, since it appears to have been overrun by c.diff over the past week. Under these conditions, with c.diff appearing to have the upper hand, how could my good flora still stand a chance left alone to heal by itself? I mean, I dream of a natural cure, but I think I’m in the soup again. That nosedive from normal stools to loose seems telling. It’s not like I just had loose BM all along, still waiting for it to firm up.

Therefore, if I look to be needing to kill it off once again, I’d seek a pulsing dose to try to outwit it. I’d ask for Dificid plus a FMT.

Oh, life ...

Believe
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Re: Relapse? Mild case, hard to judge

Postby Believe » Thu May 31, 2018 1:41 pm

Thank you, Lisa, for your second reply ... I am only just seeing it now, sorry I missed it prior.

I will do my best to hold off and keep observing. It is so hard to know! This morning was true D, and I've felt crampy on and off, but we'll see what happens tomorrow. I already took Pepto-Bismol, however, which may "mask" the symptoms. I'll try to ride it out and see what happens.

Friends, your hand-holding is very much appreciated during this emotional roller coaster!

beth22
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Re: Relapse? Mild case, hard to judge

Postby beth22 » Fri Jun 01, 2018 1:42 am

I took Pepto Bismol for quite a while because I had low grade c diff, as the doctor put it. My stool was tested and I had 100,000 bacteria per gram and when you have closer to a million per gram, it is considered an active full-blown case. This was done at a specialty lab years ago. Anyway, I took Pepto (small doses) every day for weeks and I was able to beat it back. There is also Questran that binds up toxins and also firms up stool. I would talk to your doctor about both these possibilities if you don't want to start back on vanco. I know I did not. There is also a product called EnteraGam for IBS-D, but supposedly it acts on c diff somewhat as well. Both Questran (cholestyramine) and EnteraGam need a prescription.

Believe
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Re: Relapse? Mild case, hard to judge

Postby Believe » Fri Jun 01, 2018 6:30 am

Thank you, Beth! Very interesting, this specialized testing to distinguish the amount of bacteria per gram in determining the case level. I’ll investigate the Questran and EnteraGam, as well.

Pepto definitely helps me to somewhat firm up, and generally only have to go once per day. I just may fit in this category. This is really helping me go from thinking of Pepto as merely a band-aid masking symptoms, to seeing it as a tool with a little microbial action that may be just what I need to get through this period.

Beth, can you please tell me more specifics about your small dosing regimen with Pepto — dosage, how many times per day, with meals or empty stomach, roughly how many weeks? The bottle says not to exceed 2 days, probably typical legal considerations, so I’m tiptoeing.

*UPDATE* great news! Okay, so despite some on/off cramps and worry I’d have to leave early from my son’s spring concert last night at school, this morning’s toity trip was 100% normal! The Pepto isn’t a “fake out” masking symptoms, but is my real medicine right now! So I must only have the low-grade fight going on. I also gradually upped my probiotics again, after having dropped them I think too low (my functional medicine practitioner had said to only take the bigger dosage for two weeks). Holy cow! Thank you, sweet Lord! And thank you, generous friends on this support site. I’m feeling much more encouraged to swing with the ups & downs of recovery, understanding much better. You have taught me a lot over this past few days.

Bless you all ...
k

Lisa33
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Re: Relapse? Mild case, hard to judge

Postby Lisa33 » Fri Jun 01, 2018 8:25 am

The rollercoaster of firmer BMs to loose and sometimes D is going to happen for a while. Try not to panic yourself as the anxiety will just make it worse. As long as it's not full on out bad D for several days, it's probably normal recovery. Ups and downs is exactly what happens after finishing meds. Glad things are on the up right now! Hang in there!

Believe
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Re: Relapse? Mild case, hard to judge

Postby Believe » Fri Jun 01, 2018 6:06 pm

Bobbo, it's sucky for sure, and I would love a glass of wine at the end of a long day while out in the garden, myself! But maybe our systems are not able yet to jump fully back into our "before" lives. Everybody here says healing can take a very long time, even beyond six months, and sugar and gluten (beer) are said to exacerbate symptoms and cause trouble. I noticed a few posts on the forum recommending to avoid drinking by some who said they felt much worse for it. Others have said after quite a long while, they were able to add in a little bit of drinking, here and there.

I've been told as long as you get some solid, normalish stools in between the hellish descents into D, it's likely not a relapse. For me, it went downhill for a week, too, but now I'm better, and have renewed hope it's just the roller coaster.

It's true, NAC can cause nausea and D. Are you taking probiotics, kefir, etc? I mean, I'm taking probiotics and (coconut) yogurt, big-time. I'm even making water kefir over the weekend, for crying out loud. Have you dialed back to bland grub, avoiding dairy, sugar, and gluten? I use Tinkyada rice noodles (boil water, add noodles and stir, bring back to boiling for one minute only; then shut off burner, cover, and let sit about 7 mins only for al dente perfection). I love the little cups of ready-made mild guacamole, so easy, and Simple Mills rosemary & sea salt GF almond meal crackers (delicious and soothing), canned wild Alaskan salmon and sardines, bananas, flax or soy milk, a bite or two off of a Dale's Raw vanilla protein bar, homemade veg soup that I add collagen protein pow to + a big spoon of textured chick pea miso. I like a spoonful of sunflower seed butter before bed, if I'm super hungry. How's your appetite? Still have somewhat of one? Mine has come back some, which is a comfort because it was gone before. Much as I know it's great for the body, I'm still avoiding the ground flax seed, insoluble fiber and raw vegs for the near future. A little bit of Pepto-Bismol each day is a big help to me right now. I'm reading about use of omega-3 fatty acids, probiotics, L-glutamine, blah blah blah.

Here are links to some material I'm reading, related to gut health and healing:

https://universityhealthnews.com/daily/ ... reatments/
https://universityhealthnews.com/daily/ ... e-feeling/

See how it goes over the weekend, hang in there, watch something funny, and you should know by Monday or Tuesday if you need to retest ...
-k

beth22
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Re: Relapse? Mild case, hard to judge

Postby beth22 » Fri Jun 01, 2018 6:56 pm

I took the Pepto with meals. The first couple of days with all 3 main meals and then only with lunch and dinner. When I traveled, I took the caplets that you swallow - about 1/3 to 1/2 caplet per dose. At home, I liked the liquid better and took about 1/2 teaspoon, which is a very small dose. If I had D, I took more. My GI said that in small doses it was fine for an extended period of time. It is given in full strength doses to people who have microscopic colitis for about 2 months. People with h pylori also take it for a few weeks. There is a blood test that you can take to see if there is any bismuth in the blood. Mine was always negative and I would get it checked periodically. Finally, a small amount showed up and I stopped taking the Pepto regularly. I think I was on the once a day dose for a couple of years, maybe skipping a few days in between sometimes. I would definitely not recommend that, but discuss with your doctor dosage and how long to take it. Maybe when you are done with all your activities, you can start to taper off.


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