Two weeks in and not sure about results

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Jenica77
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Two weeks in and not sure about results

Postby Jenica77 » Sun Aug 13, 2017 4:24 pm

Hi, I'm a 40 year old female. Typically very healthy, haven't been on antibiotics in years. I also wasn't near any hospitals or nursing homes or anyone with c diff.

I got some (what I thought was) food poisoning on June 19. But it didn't go away. The diarrhea just kept increasing, becoming bloody as well. I tried many home remedies but nothing seemed to help. I never had a fever and pain was manageable. I went to the dr on 7/24 (Monday). She ran a bunch of blood and stool tests, including c diff. The results didn't come back until Friday. She said I didn't have an infection but I did have an inflammation and recommended I see a GI Dr. Of course I couldn't get in until sometime the next week. However, starting Thursday I had severe stabbing pain in my abdomen. Then Saturday I also had a fever. I went to the ER.

On Saturday 7/29 the hospital did a CT scan and saw a large infection on my left side. They also told me I tested positive for c diff. They started me on flagyl. On 8/2 there was still no improvement so they added vanco. I seemed to do better with that so on 8/3 they sent me home.

So it's now 8/13. I'm taking my antibiotics every six hours. I'm taking a few recommended probiotics. I'm drinking kefir. I'm eating the soft/bland food diet my GI Dr recrmmended. I'm also taking Cholestyramine twice a day.

With all that I'm still going to the bathroom 15-20 times a day and it's completely loose/watery. Round the clock, so not much sleep either. I still have cramps a lot, though nothing like the stabbing pain of before. I'm not taking any pain meds. I am very tired and struggle to do anything other than bed or the toilet. I'm washing my hands thoroughly and wiping down surfaces with bleach wipes each time. I'm washing laundry on hot.

My GI Dr tells me this is normal. That I'll be going to the bathroom this much and feel this way for a few more weeks. I guess I just want reassurance that I'm normal. Im really starting to feel like I'll never be well again.

OCmama
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Re: Two weeks in and not sure about results

Postby OCmama » Sun Aug 13, 2017 5:10 pm

Not normal you need to switch to Dificid.

MKW
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Re: Two weeks in and not sure about results

Postby MKW » Sun Aug 13, 2017 5:40 pm

That is not normal. I can't even believe your doctor would say that. Some people need the higher dosage of Vanco. You either need to try that or Dificid ASAP. You should have responded to meds within 3 days or he should have tried something else based on what I've been seeing on this board for the last year I've been on here. Please stay hydrated, it is the most important thing. If I were you I'd get a second opinion ASAP. And maybe a third!

roy
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Re: Two weeks in and not sure about results

Postby roy » Sun Aug 13, 2017 5:44 pm

OCmama
No medical advice please, we are not Drs.
C.diff symptoms resolve within 5 to 7 days of starting meds so your continuing symptoms might indicate there's something else causing them.
Also a CT scan does not show a c.diff infection so if something was seen (other than a slight thickening of the colon wall) it's unlikely to be c.diff related.

Your GI is wrong! If symptoms do not resolve within 7 days they must review your treatment and diagnosis.

Cholestyramine binds Vanco and stops it working, your Dr should know that.

If your on vanco, flagyl and Cholestyramine all at the same time and taking lots of probiitics (meds kill the probiotics) it could be the mixture that's upsetting your gut, that's a he'll of a lot of medication and not normal.
Get another opinion from an experienced Dr.

Jenica77
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Re: Two weeks in and not sure about results

Postby Jenica77 » Sun Aug 13, 2017 6:09 pm

I'm not on flagyl anymore. Only vanco. They did a barium with the CT scan. That's what they said lit up and showed infection. You're right, there may be something else, as well as the c diff. I wasn't sick with c diff for the month prior as the test came back negative. But the dr said they will do a colonoscopy after the c diff is gone (4-6 weeks after diagnosis) to determine if there's an underlying problem or damage.

When I don't take the Cholestyramine I go even more often to the bathroom. Like every 30-45 min around the clock. My dr said I could take as much as I need though I've been sticking to the twice a day.

roy
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Re: Two weeks in and not sure about results

Postby roy » Sun Aug 13, 2017 6:43 pm

Space Cholestyramine exactly between vanco doses, NEVER take it at the same time as Vanco.
Vanco only treats c.diff so if the "large infection" is something else vanco will not treat it.
Get another opinion, CT of any type will not show a c.diff infection and a colonoscopy can be done regardless of c.diff if your condition indicates it might prove usefull.
If the Drs still convinced it's c.diff they could do an FMT at the same time. It's exactly the same procedure!

NanciT
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Re: Two weeks in and not sure about results

Postby NanciT » Sun Aug 13, 2017 7:38 pm

Hello Jenica77 and Welcome to the site Please read the first thread for all new posters

After reading through this, I would also recommend a second GI opinion. Since you have had the CT and several other tests, no improvement...it's time to get a new set of eyes on this.
You may consider an infectious disease specialist also. Call our primary, explain the situation and ask him who he can refer you to.

Sorry you are going through all this and had to find us

Hope you feel better soon

NanciT

georgina
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Re: Two weeks in and not sure about results

Postby georgina » Mon Aug 14, 2017 3:10 am

Sound like Vanco is not controlling your symptoms so your doctor should definitely revise your dosage , sometimes the classic 125 mg x 4time / day is not working and higher doses are needed. Another option is to be switched to Dificid , a much better option giving the fact that is superior to Vanco in so many ways : attacks only clostridia , spares good flora , stops the sporing process.
Be careful with Cholestyramine , is a binding agent , it can binds toxins but it can also bind meds. Have you tried a probiotic?

Jenica77
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Re: Two weeks in and not sure about results

Postby Jenica77 » Mon Aug 14, 2017 7:15 pm

Thank you for your help everyone. I am taking probiotics. A few of them. I have seen an Infectious disease Dr too. I went back to the GI Dr today. He's running a bunch more tests. I may have something else along with c diff. I am spacing the Cholestyramine between Vanco doses. My dr said to even increase how many times a day I'm taking Cholestyramine. I really hope they figure this out soon :(


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