New to group and recovering

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Mandy05
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Posts: 1
Joined: Tue Sep 21, 2021 9:21 pm

New to group and recovering

Postby Mandy05 » Tue Sep 21, 2021 10:07 pm

Hi. I'm Mandy. I'm 47 and this is my first c diff infection. I've been lurking and reading over the past few days and have learned a tremendous amount from the group. Thank you for reading my story and thanks so much for the advice I've read so far.

Here's my story so far (will be continued as I am still in recovery with the first infection). I'm terrified of having a reoccurrence and cannot get an appt with a GI doc for another 23 days. So I am reaching out to you all with any advice (I understand you cannot give medical advice) but any suggestions to help? Or what has worked for you? I have read a lot of stories on this board and I am so sorry for each of you that have suffered from this terrible infection! I'm praying this is my only infection but after reading and researching it doesn't look like that at all.

First time of diarrhea - Aug 12 tooth extraction - 5 days of penicillin and amoxicillin (I had a tooth infection which caused me to lose the tooth).
About a week after stopping antibiotics I started having diarrhea for 3 days straight, stopped one day started back again next day. Took antidiarrheal (see below) and episodes stopped completely. 4 days total. First 3 days were bad - small cramping, 10 times or more for first 2 days. Felt fine.

I had 5 days between stopping episodes and the next surgery.

Second time of diarrhea - Sept 1 bone graft - 5 days of penicillin only.
4 days into penicillin, episodes started. I stopped penicillin. Went to urgent care on Sept 8 - (bad day, went to urgent care - urgent care didn’t think it was c diff - see notes below I was told to give stool sample later on that night and next day turn in). Went back to urgent care a week later (Sept 14) since they had my stool sample. I was told it probably wasn't c diff and given Lomotil and it was just from the antibiotics. Next day
Sept 15 it was confirmed c diff.

I had 13 days of diarrhea (on and off) and 4 full bad days with episodes of over 10-15 times a day with cramping and mucus with all episodes. 1 day of small amounts of blood, which is what prompted me to go to urgent care.

I only took antidiarrheal medicine when I had to be out - so emergency use only. I only used Lomotil one time only once I found out I had c diff.

I had 2 trips to urgent care. It took a week to find out results.

I was given Flagyl for 10 days, 3 times a day. Started on Sept 16 full day, stopped on Sept 25. Tolerated Flagyl fine - had nausea for a couple of days, tasted awful, dark urine. I am very upset with the urgent care doc for giving me Flagyl now that I know it is no longer recommended and has a higher relapse rate.

Urgent Care said I was not a text book case: no fever, no nausea, no loss of appetite, no tenderness in stomach, didn’t hurt when she pressed on my stomach.

I did have stomach cramps on the bad days when the episodes were in full swing and episodes were over 10 a day.

I was hungry and miserable! I learned that food set off my diarrhea. By Sept 12, I learned to eat very little at a time (a piece of toast cut into 4ths and eaten 30 mins apart), a cracker every 30 mins to an hour. A sip every 10-15-20 minutes. I continued to eat like this for about 8 days. I was on the BRAT diet - applesauce, toast, crackers. But hungry!

At the height, every time I ate I would cramp and have to go within 30 minutes of eating. Even taking a multivitamin, probiotic pill would send me to the bathroom and have episodes. I was terrified to eat so I took a bite every 30 minutes.

I started taking probiotics and Florastor once I didn’t get sick from taking a pill. I will start slowly on Kefir starting tomorrow after reading how well Kefir does with this.

I bleached surfaces and no one has gotten sick in my family.

Now that Flagyl has kicked in and didn’t have to take antidiarrheal medicine at all, I am recovering. Eating bland but can eat. Have had 2 bm's so far. Starting to walk on treadmill. Feel fine. Have felt fine with the exception of the 4 bad days. Never dehydrated.

If you have read so far, I can't get an appt with a GI specialist for another 23 days! Oct 14 is my appt date. I am just so scared of getting a 2nd infection. Flagyl stops in a few days.

Questions for GI doctor - please let me know if I need to add any questions for my upcoming appt. Thanks!
1 - What is the best way to avoid a reoccurrence?
2 - What are the best types of probiotics to take? Pill? Kefir? Both? Florastor?
3 - What would be your next treatment be? I have seen that Fidaxomicin (Dificid) is a bit better Vancomycin. I found out that Flagyl is the worst medicine to take for c diff.
4 - FMT is recommended by some doctors after 2 or more occurrences. What is your treatment plan?
5 - I was told by the urgent care doctor that I can take an emergency antidiarrheal medicine if needed. Is this okay? I see by research it says no but if I have to go to the doctor and I can’t stop or have to be somewhere is it okay? Again, this would be only for emergency use.
6 - I go back to the oral surgeon for a follow up in December and will have the implant put in in December or January. What antibiotic should I take? I will ask if I don’t have to take any antibiotics at all.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: New to group and recovering

Postby roy » Wed Sep 22, 2021 4:35 am

Your doing all the right things except considering Lomotil.
antidiarrheal meds can cause serious complications.
Theres nowhere you need to go that's more important than your health is!
Although flagyl is not recommended it still works in 70% of cases so with average luck you will be fine.
The GI appointment is at an ideal time, most relapses are within 3 weeks of stopping meds so you should be recovering well by the time you see the GI.
Caution though.
If you see a GI they might/will want to test (you only see a Dr if your sick and they assume you want treating) it's highly likely you will test positive.
A good Dr will know that you do not need treating if your symptoms (frequent D) are gone.
Some might want to treat or even suggest a colonoscopy, unless you have ongoing problems both are probably not needed.
Future antibiotic use is a minefield.
Theres no safe antibiotic.
Many posters are here because of dental antibiotics.
The risk has to be weighed up and it seems taking antibiotics to prevent infection might not be a good choice for you.


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