What was/is your recovery like?

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Alex1712
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What was/is your recovery like?

Postby Alex1712 » Mon Jun 03, 2019 11:23 am

I'm almost 3 months "cured" but i feel horrible.

History: female, age 28. had c diff that presented very unusually. Mostly nausea, constipation, and unable to eat for a week before i got watery D only 1-3x a day. No abdominal pain strangely, just nausea. Tested positive for c diff, given 10 days of Vancomycin, now have tested negative for toxins several times since.

After Vanco i felt great!...for about a week. Things have been
up and down since but even at my best i feel like i have some kind of flu with nausea, horrible constant fatigue, body aches, and abdominal discomfort. I'm unable to eat enough. I can't function or live a normal life, I'm 95 pounds and can't gain, only able to eat rice, bread, and bananas or everything gets worse.

I've been taking Florastor since i started Vanco which helps A LOT so I don't skip it for anything. Vanco didn't stop the D, but Florastor did. I skipped Florastor for 1 week a while back and the D, chills, etc returned.

Anyway...is it normal, almost 3 months later, to still have zero appetite, M in stools, NO energy, sweats, and sore stomach/abdomen? It's like i feel better for a few days, then suddenly crash and feel horrible for a week, slowly recover, rinse and repeat. What i eat doesn't matter.

I also tested positive for elevated calprotectin recently which means my bowels are STILL inflamed. I'm scheduled for a colonoscopy in a month...will it cause my c diff to relapse? I'm still testing positive for PCR, just not toxins.

beth22
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Re: What was/is your recovery like?

Postby beth22 » Mon Jun 03, 2019 9:59 pm

I was like you for a long time. I don't know if the colonoscopy prep would cause a relapse. A couple of posters said it did, but most have not relapsed. I had "low grade" c difficile for a long time. Pepto Bismol helped me on bad days, but ask your doctor before starting anything. There is also a product called EnteraGam that is a medical food to help strengthen the gut immune health. You need a prescription for it though. My insurance did not cover it, but they have their own pharmacy and you can get it at a reasonable price. I would ask your doctor about it and see if he/she thinks it might help. There is also cholestyramine which binds toxins and tends to firm stools quite a bit. It is very inexpensive. It is a powder you mix with juice or water.

Rusty S
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Re: What was/is your recovery like?

Postby Rusty S » Wed Jun 05, 2019 11:48 am

Just my $0.02: Colonoscopy prep just clears out food waste that blocks visibility of the scope for a day or so prior... it wouldn't have any real impact on gut flora. I was in your shoes, too. I had my colonoscopy the day before my test results came back positive for C Diff. Would've been nice to know that ahead of time, but it was good to rule out Crohn's Disease or Ulcerative Colitis I suppose.

Ril
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Re: What was/is your recovery like?

Postby Ril » Thu Jun 06, 2019 7:24 pm

I’m not sure why you have been tested for toxins several times....That aside, the jury is out on whether or not a colonoscopy will cause a relapse. There seems to be varying opinions.
My insurance covered covered much of the cost of Enteragam, a medical food, which is obtained through a special pharmacy, and was used for PI IBS-d. However, before trying that, my dr prescribed the less expensive cholestyramine that Beth mentioned which worked also but had to be used more frequently.
I too suffered from prolonged nausea and feeling crummy for a long time during recovery, had severe PI IBS but was well able to function and could eat although my diet was limited. I did not have chills. Because of my symptoms my dr also wanted to do a colonoscopy to rule out IBD but waited a long time, however I did not have the calprotein test done. Mucous in the stool alone is not an alarming symptom. It only signifies irritation and occurs with IBS also.

I hope this was some help. Recovery can be difficult and you might be having a difficult one- I can’t say- but I did and didn’t think I would ever feel normal again.
Rita

Alex1712
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Re: What was/is your recovery like?

Postby Alex1712 » Thu Jun 06, 2019 10:18 pm

Thank you everyone for your responses. This is good information. I was tested for toxins several times because my c diff symptoms kept returning, then waning, then returning repeatedly. This is still happening to me, and even my "good" days are pretty pathetic.

NanciT
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Re: What was/is your recovery like?

Postby NanciT » Thu Jun 06, 2019 10:34 pm

I also felt "great" the 3 1/2 months I was on Vanco. After that, I did not do well, relapsed, went on Dificid for nearly 4 months. My recovery has been very long and the Post IBS on and off. I had good days and bad day...then the good days became more and more. I still struggle with issues that only occurred with CDIFF and it's been 4 years.
We have posters who are on here, treated once and do wonderful. One just never knows

NanciT

Machaon
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Re: What was/is your recovery like?

Postby Machaon » Fri Jun 07, 2019 11:16 am

Hi Alex1712! Sorry that you are feeling so sick!

I had a horrible, debilitating experience with C-diff. The worst time was when I was on metronidazole (Flagyl). I became so sick and weak that I couldn't pick up my feet without help. My ankles, legs and feet were badly swollen. Walking was difficult. I even told my wife that I didn't think that I was going to survive.

I was given Vancomycin and I recovered quite quickly and the swelling became much improved. While I was on Vancomycin, I felt good and I could eat anything.

6 days after taking Vancomycin I started feeling sickly again. I didn't wait until worsening symptoms, I called, requested Dificid, and my doctor obliged me. But... until I received the Dificid, I resumed taking my leftover Vancomycin and I started feeling really good again.

I thought that, if I felt good before the C-diff, then, after stopping taking the Vancomycin, if I became ill again, it had to mean a return of the C-diff, regardless of symptoms.

After 10 days of Dificid, the C-diff was gone. I had no ill effects and could eat anything, and I am still okay almost two years after C-diff.

As others have said, C-diff survivors have differing experiences with the disease and recovery.

Regards, best of luck and health, Bob
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

filgood
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Re: What was/is your recovery like?

Postby filgood » Fri Jun 21, 2019 4:10 am

Thanks for sharing Alex, I'm 29 and having the exact same issues you are describing. Glad to see someone else suffering from flu/chills feeling even with negative tests (I had 2 positives and around 7 negatives). Personally I think the tests are meaningless if the symptoms go away on treatment only to return very shortly after withdrawal. To me it's blatantly obvious that the infection is still present based on symptoms and stool appearance/smell.

Wish I had a success story for you but I'm still trying . So far for me...FMT pills cause almost all symptoms to disappear for a day then return the next. FMT enema does seemingly nothing for me. Quite incredibly I can feel my body warm up within a few hours of downing FMT pills, making me think the bacteria are temporarily inhibiting C Diff until pooped out. I also had remission on Alinia, Rifaximin and Tinidazole (separate courses for each) but only for a day.

I think the issue is we are not knocking out the infection entirely, only enough to reduce the bad colitis symptoms. Without an effective method to outright kill the bacteria we are kinda stuck. The only antibiotic I haven't tried is dificid but I can't afford it :(.


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