Recurring C-Diff - Need Opinions - New to this group

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TOMY
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Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Fri Aug 18, 2017 9:11 am

Good Morning from Central New York,

My name is Tom, 55 years old, former P.E. Teacher (retired this past June) ....and a young athletic 55 year old I may add. My wife and I returned from Mexico July 7th, 2017 on our annual trip to Playa del Carmen. Upon our return to the USA each of us were stricken with severe diarrhea, and my wife had severe nausea as well (I fortunately did not have the nausea). However, along with my severe diarrhea I had a sinus infection. I went to my primary Dr. and was prescribed Augmentin for a 10-days to combat the sinus infection. After 7 days taking Augmentin my diarrhea became worse. more frequent and just didn't feel well. I went back to my doctor and she tested me for EVERYTHING including blood, stool samples etc. Sure enough I tested positive for C-Diff. She started me on Flagyl 500mg three times a day for 14 days (plus 'Align' probiotics) . I felt towards the 10th day I was improving, but still was suffering from loose stools and just general typical Flagyl side effects (fatigue, bloating etc). My doctor retested me and C-Diff came back Neg.

About a week after ending my 14-day regime with Flagyl, my diarrhea became more frequent and cramps became for frequent. I called my doctor and made an appt. I was able to get right in and she ordered more blood testing and stool samples. Sure enough, I got a call that my C-Diff had returned.
So......as of yesterday I was prescribed Vancomycin 4x daily (250mg each dose). Today is my second day: Here are some of immediate symptoms:
1) Middle of the night Diarrhea (two to three times at night)..... once in the morning....nothing during the day
2) Weight Loss.....so far 8 pounds in in 30 days
3) Hand Swelling with Arthritis symptoms in both thumbs and stiffness in my hands.
4) Some thoracic pain on the left side of my back (could be muscular unsure...lower rib level.)
5) Liver Enzymes are elevated (Dr. didn't seem to care about that)

Note: I still have an appetite and no nausea at all. My doctor does NOT want me to take anything else while taking Vanco. I am concerned about exercise and I was 'gym rat' and a runner and have not done a thing in 45 days.....should I?

.....Does anyone have an opinion or suggestion?

Thank You for reading this! Tom

NanciT
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby NanciT » Fri Aug 18, 2017 9:30 am

Hello Tom and Welcome to the site Please read the first thread for all new posters

I would talk with the doctor about taking a probiotic or trying some Kefir but time this and space it out from the Vanco. If you are feeling well and able to continue a regular diet that is great! Dairy should be cut back during CDIFF. Hopefully when you complete the Vanco you will be done with this.
As far as the gym, proceed with caution. It always best to check with your MD first. It's great to get exercise but be careful because with D you can get dehydration. Make sure to drink smart water or something with electrolytes.

Hope you feel better soon!

NanciT

amyc
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby amyc » Fri Aug 18, 2017 12:47 pm

Do not work out! Your body needs its energy to fight this infection and to heal your colon. C diff is a contagious disease, so you could spread it to other members of the gym also.

TOMY
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Fri Aug 18, 2017 1:41 pm

Thank you so much for your responses. This is a difficult thing to deal with and it mean a lot to me!

beth22
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby beth22 » Fri Aug 18, 2017 4:45 pm

When did the pain and problems with your hands begin - before or after Flagyl or did they start when you started vancomycin?

Allenj
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby Allenj » Fri Aug 18, 2017 7:32 pm

Despite the wide use of metronidazole, only rare cases of hepatotoxicity have been reported, and metronidazole is not listed among causes of drug induced liver injury and acute liver failure in large case series. Oral Vancomycin (from what I gathered on here and elsewhere) isn't absorbed into the bloodstream, although when I was taking it, I had burning during urination that lingered an hour or so afterwards. Also, I would start taking Florastor 2x Pills Twice Daily (e.g. morning and evening.) I am a runner as well, but I had to stop because it seemed to exacerbate my situation. Your colon is trying to recover, and you're subjecting it to the trauma of running. The lower thoracic pain might be your kidney? I know I had an elevated creatinine level, and pain in that area which went away when I started my prescribed routine. Doctor said although it was elevated, it wasn't high enough for a concern and mostly likely because I wasn't drinking enough water, but c. diff can effect the kidneys because of the sudden dehydration it can cause in some cases.

Machaon
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby Machaon » Fri Aug 18, 2017 7:53 pm

Tom, I did not have swelling in my hands but both my legs and feet swelled up painfully like balloons for many weeks!

I'm 73. I do deep knee bends and lift 10 pound hand weights and power-walks. Before the vancomycin was able to relieve the nasty debilitating symptoms, I was too weak to lift 10 pounds so I reduced it to about 5 pounds and kept up the knee bends even though it was an ordeal, in between running to the potty!

C-diff was not going to rob me of my ability to exercise! At 73 exercise is too important!
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

TOMY
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Sat Aug 19, 2017 3:37 am

Hello

Well....My hands, knuckles and swelling (each thumb has now limited motion with 'trigger' type symptoms) all began toward the end of the Flagyl period and has progressively been worse. I asked the doctor if while on vanco if I could take Aleve or IBuprofen, and she said 'NO' due to my liver enzymes, which were high in my recent blood work (a week ago). So I try to stretch my hands and fingers and use ice. Anyone else experiencing these symptoms?

This is the end of the second day on vancomycin (4x 250mb daily), and unlike the previous two nights, I didn't RUN to the bathroom with diarrhea three times last night, but then again, I'm afraid to eat, worrying about what might happen.

I would like to mention that toward the end of the 14 day Flagyl regime, I was having intermittent abdominal pain, and my Dr. ordered a CT scan with contrast of my abdomen, and pelvis.....all came back 'unremarkable'.

I am doing the best I can drinking powerade etc, but I am not sure about eating solid foods. Yesterday I ate 'steel-cut' oatmeal (like eating a million small rocks lol), and some chicken soup with extra noodles. I guess at this point I'm happy that I didn't have diarrhea last night, and who know maybe the Vanco is 'kickin-in'.

Thank you for ALL you responses, they are very helpful and please if you any additional opinions or ideas, please let me know.... Stay Strong! Tom

TOMY
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Sat Aug 19, 2017 3:45 am

Allenj wrote:
> Despite the wide use of metronidazole, only rare cases of hepatotoxicity
> have been reported, and metronidazole is not listed among causes of drug
> induced liver injury and acute liver failure in large case series. Oral
> Vancomycin (from what I gathered on here and elsewhere) isn't absorbed into
> the bloodstream, although when I was taking it, I had burning during
> urination that lingered an hour or so afterwards. Also, I would start
> taking Florastor 2x Pills Twice Daily (e.g. morning and evening.) I am a
> runner as well, but I had to stop because it seemed to exacerbate my
> situation. Your colon is trying to recover, and you're subjecting it to the
> trauma of running. The lower thoracic pain might be your kidney? I know I
> had an elevated creatinine level, and pain in that area which went away
> when I started my prescribed routine. Doctor said although it was elevated,
> it wasn't high enough for a concern and mostly likely because I wasn't
> drinking enough water, but c. diff can effect the kidneys because of the
> sudden dehydration it can cause in some cases.

Hi Allen, thank you for the response....I was seriously thinking about trying to lace up my brooks and hit the pavement again, but I was advised not too. I really am concerned about my recent bloodwork, which showed a significant elevation in my liver enzymes. While on Flagyl I was taking (on occasion) and 800mg pill of IBuprofen that may have contributed to the enzyme elevation. Unsure. The kidney (or side pain) comes and goes, so I am certain its no musculature in nature. I guess it's a safe bet to stay away from inflammatory meds at this point, which all seem to have a negative direct impact with vancomycin on your liver & kidney function. Tom

TOMY
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Sat Aug 19, 2017 3:48 am

beth22 wrote:
> When did the pain and problems with your hands begin - before or after
> Flagyl or did they start when you started vancomycin?

Hi Beth.....started toward the end of the Flagyl dosage (maybe during the 7th day? give or take). Never previously have I experienced any association with this issue as any point in my life. More than a little concerned about it. Tom

beth22
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby beth22 » Sat Aug 19, 2017 5:14 pm

The reason I ask is that I am having the same thing with my thumbs and one wrist. I have back pain a lot anyway. My left thumb started around the same time in June when I had a flare-up of GI symptoms. I have been testing positive on PCR for c difficile for a year, but since EIA has been negative, I have not treated. I see a GI motility specialist who told me that it may all be connected to the c difficile toxins. I had this happen one time on my right thumb and it stayed so that I could not bend it for almost 8 months. Then I had parathyroid surgery, was given a cortisone injection for inflammation I guess and 3 days later, the thumb was fine. It has been ever since. Now in June that hand is acting up a little, but the other one is pretty bad. I got a brace to wear at night so that I don't have it jerk and dislocate when I stretch it as it was doing. It helps, but I am going to see the hand specialist next week and see about getting a cortisone shot injected into the area where it is a problem.

If c difficile toxins have anything to do with this, you should see some improvement I would think when the vanco kicks in. It does take a few days to do so though. Let us know how it goes. I know the motility specialist has many patients who have GI problems - IBS and SIBO who suffer from fibromyalgia. He has found in his research that it is indeed connected. I know my fibromyalgia is way worse when I have GI problems.

Machaon
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby Machaon » Sat Aug 19, 2017 6:27 pm

Tomy, I looked back at my records and realized that the swelling in my legs, ankles and feet happened after about a week on flagyl. I attributed it, right or wrong, to an interaction between Coumadin and flagyl.

As I recovered from the C-diff infection, over many weeks, the swelling got better. My right side was much worse and painful. Before my infection improved the left side got bad also.

Just wondering if there is a connection with your hands?
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

TOMY
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Posts: 13
Joined: Fri Aug 18, 2017 8:26 am

Re: Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Sun Aug 20, 2017 5:10 am

beth22 wrote:
> The reason I ask is that I am having the same thing with my thumbs and one
> wrist. I have back pain a lot anyway. My left thumb started around the
> same time in June when I had a flare-up of GI symptoms. I have been
> testing positive on PCR for c difficile for a year, but since EIA has been
> negative, I have not treated. I see a GI motility specialist who told me
> that it may all be connected to the c difficile toxins. I had this happen
> one time on my right thumb and it stayed so that I could not bend it for
> almost 8 months. Then I had parathyroid surgery, was given a cortisone
> injection for inflammation I guess and 3 days later, the thumb was fine.
> It has been ever since. Now in June that hand is acting up a little, but
> the other one is pretty bad. I got a brace to wear at night so that I
> don't have it jerk and dislocate when I stretch it as it was doing. It
> helps, but I am going to see the hand specialist next week and see about
> getting a cortisone shot injected into the area where it is a problem.
>
> If c difficile toxins have anything to do with this, you should see some
> improvement I would think when the vanco kicks in. It does take a few days
> to do so though. Let us know how it goes. I know the motility specialist
> has many patients who have GI problems - IBS and SIBO who suffer from
> fibromyalgia. He has found in his research that it is indeed connected. I
> know my fibromyalgia is way worse when I have GI problems.

Beth,

I've never have ANY inflammatory issues prior to my CD diagnosis. I also do quite a bit of computer work, and other daily activities which require using my hands / fingers etc.....I guess you don't realize how debilitating this can be until it becomes a reality. I'm three days into my vanco regime, and I feel that the arthritic pain has spread to my other fingers other than my thumbs, as general stiffness and pain associated with bending persists toward the tips of my fingers. I can open and close my hands, but the range of motion is limited when I stretch wide open and when clinching in a fist motion.

I am hoping based on other posts that maybe following as time goes on and following the vanco antibiotics that there will be some improvement. Again my doctor has told me that due to my high liver enzymes that I need to stay away from any inflammatory meds.

On a positive note, I have seen a noticeable decrease in my bathroom frequencies over the past two days while on Vanco. No discernible side effects with the exception of this crazy 'hand inflamed situation'. Some typical abdominal pain etc. No nausea, no fever, and lessening diarrhea.

My biggest concern is 'will this onset of arthritis eventually subside'?' Hope so! Thank you for your response, and BTW I have a scheduled appt with a GI at the end of the month (took 30 days to get in!). Currently, Although my primary is a good doctor, and very caring, I feel that she is far from an expert on C-diff, and from the postings and info I've learned (mainly from folks like you). I have exceeded her 'up to date' knowledge of treatment. Kinda concerning as well... Thanks Again... Tom

TOMY
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby TOMY » Sun Aug 20, 2017 5:20 am

Machaon wrote:
> Tomy, I looked back at my records and realized that the swelling in my
> legs, ankles and feet happened after about a week on flagyl. I attributed
> it, right or wrong, to an interaction between Coumadin and flagyl.
>
> As I recovered from the C-diff infection, over many weeks, the swelling got
> better. My right side was much worse and painful. Before my infection
> improved the left side got bad also.
>
> Just wondering if there is a connection with your hands?

Machaon, I have not received any medical diagnosis that my hand arthritic inflammation is a result of the toxins associated with C-Diff or the interaction from the 14 Days I was on Flagyl. But it seem VERY coincidental that since I have NEVER experienced ANY prior arthritic issues with my hands (or any OTHER parts of my body) prior to Flagyl.

Did you say that you improved on Vancomycin? I am hopeful that I will eventually see some improvement, and that this onset of acute Arthritic 'hand pain' will go away and not end up getting worse or possibly permanent.

Thank you for your response.... Much Appreciated! Tom

Ril
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Re: Recurring C-Diff - Need Opinions - New to this group

Postby Ril » Sun Aug 20, 2017 7:55 am

TOMY, I am glad your bathroom trips are lessening. I am sure it is due to the vanco kicking in.
I hope as time goes on your hand symptoms lessen too. Maybe your GI will have some knowledge that is more recent about the connection to c diff. Here it seems the best we can do is tell you about similar experiences.

Please do not use the quote feature. It just takes up too much room.
Thanks,
Rita


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