New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

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Alexnew
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Joined: Tue Oct 17, 2017 2:56 am

New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby Alexnew » Tue Oct 17, 2017 1:19 pm

Hello everyone my name is Alexandrea and about 14 days ago I was diagnosed with CDIFF. I am a female and I am only 23 years old. The way I believe I got CDIFF was from antibiotics I used back in May to treat a belly button infection. I used to much clindamycin and amoxicillin to treat that infection. Turns out those are not even the antibiotics that even cured that infection. My body just did not feel normal after that infection took havock on my body so I kept going to the doctors with symptoms of a swore/swollen abdomen, changes in stool, lack of appetite, weight loss. I only remember one bout of watery stool and it lasted 2 days. I have personally never had a fever from my CDIFF and my blood pressure has been quite normal. I just finished my first round of fagyl. It was 250mg 3x a day for 10 days. The antibiotic was not as bad for me in the sense of side effects. I did have mild nausea, brain fog, slight metallic taste, heavy feeling in my legs but nothing I could not handle. During my fagyl treatment I also had an colonoscopy. I will never ever forget the liquid laxative, that was a very long night. Something strange I remember right before I went under they said I have a low white blood cell count or something and that was the first time I heard about it and I forgot later to ask again about it.
I was told that my Colon looked mildly inflamed and I had internal hemorrhoids. I was also told I had colon polyps. My doctor seemed astonished because it is rare for someone my age to have these things. He removed them and I am currently waiting for results. I am currently waiting to get an MRI as well because I was told from my CT scan that my liver is an abnormal shape.
I am very nervous about all of this stuff that is going on with me. It is the longest waiting game I have ever played. I am reaching out for support and words of advice.
To top everything off, I went into the dentist to get some teeth extracted dab smack in the middle of finding out I have cdiff. I am also in recovery for that.

Since I have finished my fagyl I have noticed my tummy pain has come back. I feel I am going number # 2 more often per say 4-6 times a day. They are fairly solid, no mucus, just a little bit more tan in color. Also I have become more restless at night. I currently have an appointment on the 26th to get result of my colonoscopy and possibly discuss more treatment for my CDIFF.

Side notes about me:
Diet: non dairy yogurt once a day, almond milk with Carnation instant breakfast. 1-2 eggs. Avacado
Steamed veggies, I do add a tablespoon of butter some seasonings as well. Saltine crackers.
Potpies. I do occasionally have a cookie.
I have one probiotic a day 25billion. Called renewlife ultimate flora. Water, so much water.
I try my best to be very hygienic. When I found out I totally cleaned everything with bleach.

Questions:
So I figured I could ask some questions in my introduction post as well.
If I were to need to take antibiotics again for my CDIFF should I remain with fagyl or try something else?
Should I be taking more probiotics, or better quality?
Has anyone else had problems such as polyps and liver issues with cdiff?
Does anyone know if every time you go #2 does it always contain spores?
Also can you take a bath?
Has anyone else had a low white blood cell count because of cdiff?
My tummy is starting to burn again along the bottom, should I wait until my appointment on the 26th or call my GI?
Do you have to throw out your underware? I have never soiled clothes during this infection.

I do understand you guys cannot give medical advice, I am just hoping someone has been through similar things and can offer their own opinions.

beth22
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Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby beth22 » Tue Oct 17, 2017 4:48 pm

Hi Alex - Welcome to the site. Please read the first forum for new posters if you have not already. Sorry that you have to deal with all of this, especially at your age. I don't know how common polyps are at your age. You will have to wait and see the results of the colonoscopy for that.

As far as some of the other questions. You do not need to throw out your underwear as long as it is not soiled form accidents. Just wash it in the hottest water possible for whatever fabric it is made of. You should practice good hand hygiene and wash your hands often and well. If you have already cleaned your bathroom with bleach, that is good. You might want to clean the toilet with a bleach solution more often than before.

If you get a relapse, I would not take Flagyl again. I would ask for Dificid if your insurance covers it, as that is the best medication that kills the least good flora. If not, then vancomycin. Flagyl has a lot of side effects and if you relapse, then I would try something different.

Take whatever probiotics you tolerate well. I take VSL#3. Others take Florastor. It varies from person to person. Eating the yogurt is also a good idea.

I have had low white counts for many years, even before c difficile. I have an auto-immune disease on my thyroid and was told that this could cause it. Usually c difficile will give a higher white count, not lower, but I would ask your PCP about it. Often a virus can lower it. I have not had abnormal liver scans, but I did get chronic pancreatitis from c difficile.

If you get the burning and other symptoms, contact your GI. You don't want to wait until your appointment if you think you are relapsing.

Not sure about a bath. You don't want to be swallowing spores. I don't take baths, but maybe someone else will add to this and give you some advice.

Alexnew
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Posts: 9
Joined: Tue Oct 17, 2017 2:56 am

Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby Alexnew » Tue Oct 17, 2017 6:23 pm

Thank you for welcoming me!
I appreciate your time and advice.
I currently called my GI and had my schedule moved up and is now two days away. I am also going to try the florastor. Just picked some up. I am going to push for that antibiotic aswell. I saw that my insurance did cover it.
I will keep everyone posted and such.
Thank you again!

amg
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Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby amg » Tue Oct 17, 2017 7:56 pm

I'm so sorry to hear you're going through all that at 23.

As far as your c diff - I agree with Beth - Flagyl is not a good medicine for c diff. Many experts have moved away from ever prescribing it for c diff, and it is not FDA approved for c diff. Although some people are cured with Flagyl, it destroys a lot of your good intestinal bacteria that your body needs to keep c diff away, and some docs think it contributes to relapses.

DIficid is a good medicine. My daughter tolerated it extremely well and it was very effective.

Your diet looks pretty good for right after c diff. Except the pot pies might be a little rich. Some high fiber veggies like broccoli could be tough to digest. Many people have noted that their intestines are more sensitive for a period of recovery and can't tolerate high fat or high fiber foods very well,and have found it helps to stay somewhat bland and lower fat for a while.

Good luck and a speedy recovery to you!

georgina
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Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby georgina » Tue Oct 17, 2017 11:51 pm

Welcome to the site Alex.
Sorry to hear have been dealing with Cdiff , hopefully Flagyl cured the infection , saying that because your symptoms for now seem like recovery and not like a relapse. However , if you are starting to get frequent D and abdominal pain you must definitely discuss wth your doctor about another treatment , Vanco or Dificid that are actually FDA approved for CDiff (Flagyl is not a FDA approved treatment).If your insurance covers it you should request Dificid as it has the higher cure rate , mostly well tolerated , targets only clostridia and spares good flora and unlike other treatment it stops the sporing process.
As far as probiotics , Florastor is been studied to be more effective in the Cdiff battle.
And, do not throw away your underwear , just soak it in bleach water for 15 min and wash it in hot water and it will be decontaminated.

roy
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Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby roy » Wed Oct 18, 2017 4:41 am

In my younger years I used zit lotion on cotton buds to cure and prevent belly button infections, take it you have an "inney", its a common problem!
Your symptoms are mild and not typical c.diff so before retreating remember that it's fairly common to carry c.diff and not need treating. Its only a disease if it overgrown and causes D.
Even then the first treatment is to stop the offending antibiotic (you did) and often the symptoms resolve (they did).
No other treatment is needed if the symptoms indicate it's "cured" even if a test shows positive.
Your Dr was VERY quick to do a colonoscopy, possibly not his greatest decision.
The dose of flagyl he gave you was HALF the recommended strength required to kill c.diff, your almost symptom free now so hopefully it still worked.
It sounds like your Dr is not good at treating or diagnosing c.diff!
Next appointment he might say retest to see if its gone, that would be very bad advice.
Guidlines say NEVER test to see if its gone and NEVER test formed stool, tests can come back positive because of the old infection and colonisation (harmless) or come back negative because the relapse causing spores have not yet germinated. Only the lack of D indicates its "cured"
You can take a bath, might be an idea to finish off with a shower, that's always a good thing regardless of c.diff.
Shedding spores.
Around 1 in 20 healthy people carry c.diff, they shed spores.
Many animals carry c.diff, they shed spores.
Its not unusual and not avoidable.
Its only a problem if someone who is on broad spectrum antibiotics ingested the spores.
Georgians right about washing underware.
Remember.......
If your Dr wants to test again ask him why.
If he says it's to see if its gone ask him to check the correct protocol.
If he still insists on testing and you don't have D, get a new Dr.

Alexnew
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Posts: 9
Joined: Tue Oct 17, 2017 2:56 am

Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby Alexnew » Wed Oct 18, 2017 3:23 pm

Thank you everyone!! Today I woke up and still no D! It is still not hard formed stool but not the D!!
Wootie woot!
I appreciate all of your words of wisdom.
I wonder if I never even had this thing and the doctor missed diagnosed me.
On the positive side, I really do feel like fagyl helped take away some of my symptoms,left after belly button infection.
Side note:
I was originally tested by blood I want to say for cdiff. Not to sure if you can but that is how I thought I was tested. The first time it came back negative.
Then with a different doctor I was tested by stool. Which came back positive. These test we're about a month apart. I was also on amoxicillin at the second time. I was taking one a day 500mg to prevent a tooth infection "turns out I was taking them wrong" supposed to take 3 a day. As soon as I got to told I had this thing. I stopped taking them.
I believe the colonoscopy was a tad abrupt as well. It came out of nowhere. The positive side is he was able to find polyps. Which I am waiting on results to see if they are cancer or not. Which ever way they could of turned into cancer. So it is a blessing is disguise.
Thank you again everyone. I appreciate your time!!

Ril
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Re: New diagnosis, New to CDIFF.. looking for support/advice.. I just wish I could feel better..

Postby Ril » Wed Oct 18, 2017 10:28 pm

Alex, just a couple of quick FYI s
C diff is only tested via stool, not blood

And no d today is great. Forget about looking for formed stool. If in fact you did have c diff, it frequently takes time before your stool looks the way it used to. Anything other than d is just fine. We call the the new normal.

Rita


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