new with questions...

[needhelp]

Hi, I have been posting on the UK site because I couldn't register for this one. I finally registered yesterday although I have been reading and educating myself on cdiff for over a month now. I have had some responses to my posts on the UK site from US contributors and I thank everyone who has responded.

My abbreviated story: (I am 48 yr old female)

8/11/08 - took clindamycin for a tooth infection - had D for a few days but thought nothing of it. (the pharmacist told me to d/c antibiotic if I got D but I continued the antibiotic because I didn't know the implications)

9/11/08 - had D and nausea for a couple days but thought it was a stomach bug

A few days after that episode, I began having D on and off until 9/20 at which point I was going every 10 minutes for about 18 hours straight. I was too sick to call the ambulance. My son got me to ER and my blood work showed high white count and very low potassium. I was admitted and started on Flagyl the next day, my stool test was positive for cdiff. and I was released 4 days later. The D stopped the day I got off Flagyl (10 days after hospital release). I saw my primary 3 days later and my blood work showed a normal blood count and normal potassium. I lost 18 pounds during this ordeal.

I have had intense pains in my stomach and intestines since I came home from the hospital. Over the course of the last week my BM's have changed to be more loose (very unusual for me) but not D. Also started mucous. I am going about twice a day.

I am so miserable with the pain and some days feel so sick that I just sleep all day. I have had to take phenergan for the nausea on some days. My diet is still the same brat diet that I have maintained since I came home and am still losing weight. Some days I can't eat from feeling so sick. I am always in some kind of pain in my intestines, sometimes worse than others.

My question is: Could I still have the c diff? Just because the blood count went back to normal (on day 4 of being on flagyl) does that mean I am no longer infected? I understand the possibility of relapse but that would mean D (although my initial bout began with intermittent D)?

I have never seen a dr since the quick visit with my primary because she keeps telling me to go to ER. Said it would take 3 months to get appt to a GI dr. I went to urgent care clinic a week and a half ago and they said I probably had appendicits or UTI and to take an ambulance to their hospital (a different hospital than I went to initially) I refused to go and just went back home, I didn't want to be exposed to the hospital. I am not dehydrated and knew I didn't need IV fluids. These people don't get it! They are very uneducated on cdiff (in hospital, no one washed their hands, wore gowns, the nurses would give me meds and go on to the next person and give them their meds and someone was admitted into my bed after I was dischared w/o no cleaning done)

I am sorry for the lengthy post but I am at my wits end. I am trying to figure out what is wrong with me and whether or not I still have the c diff or am suffering from IBS as a result of c diff. It would seem to me that I would need a colonoscopy to find out.

Thank you for your time, support and suggestions!

[TheVike]

altho the way i contracted it my story is almost exactly the same as far as the recovery not so much pain but ungodly nausea, and yes it can take months for the tummy and all of it to go away! lots of dan active activia perhaps an otc probiotic abanana or two a day and you WILL eventually get back to normal...sorry bit I lost 40 pounds in my ordeal and it took close to a year before i started to feel my same ol self!

[Nancy1]

needhelp,
Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

Have you had the standard test for cdiff? That is the one that looks for toxins. If not, you should have this done. Without this info, it is hard to say whether or not you have cdiff. However, there are many false negative test results, so the result is not definitive. You do not need a colonoscopy to tell whether or not you have cdiff. You can have cdiff without D, but it's unusual.

Some folks here have taken Bentyl or Levsin for pain. Gas-X can help if it is gas pains. Primadophilus reuteri helped me get my appetite back, so I could stop losing weight.

Ugh, I am really sorry to hear that the hospital staff was so careless about your cdiff. If I were you, I would complain to the administrator.

[klt03301]

needhelp...I went for MONTHs after being cleared of C Diff thinking I still had it b/c I had terrible nausea and intestinal and rectal soreness. I had my stool tested over and over again b/c I couldn't believe I was so sick w/o having C Diff. It was awful. The only thing I can suggest is to get it tested again; my doc said 3 samples at least. I was tested for the bacteria AND the toxins MORE than 3 times by several different labs. Nothing there. So, I just kept coming back to this board and getting encouragement from people like Vike, Roy and others about how it takes a long time to heal.

Here's what I did:

Started 3 different probiotics
Ate yogurt 2xday; drank yogurt smoothies
Drank Kefir....IT WAS THE BEST...calmed my tummy and is full of probiotics
Started drinking Ensure when I could tolerate it...not the Plus b/c I couldn't handle the fat in it
Started taking supplements to support my immune system
Slowly my appetite returned and ate bland foods; started new foods slowly

I lost 20 pounds and after 8 1/2months, have gained almost all of it back.

I still get sick sometimes from introducing new foods, but it's not often.

You will get better, though I know it's hard to believe right now. Hang in there...it may take a while. I'm still not the same and don't know if I ever will be, but I have my life back and can do just about anything I want.

I also take these meds that seem to help with the pain:
Nortriptyline 25 mgs at night ( an old antidepressant-low dose-calms the instestines)
Levsin -sublingual-helps a lot with soreness and intestinal spasms


My best wishes to you...Karen

[needhelp]

Hi and thank you all for your replies.

Nancy, yes, I did have the stool test for the toxins. I remember the dr saying that he was testing for the toxins, I think he mentioned 2 toxins (maybe he was referring to A and B). The stool test was positive for c diff. Luckily I had a very good nurse that day and she was diligent with collecting the specimens, she took 3 specimens (of the same stool sample).

My main concern is whether I could still have the cdiff or just the "after effects". I guess there's no way to know unless I am tested again. It's been just over a month since I've been off flagyl (I was given 250 mg 3x/day, from what I read here that is a lower dose than normal)

I do take bentyl when the pain is unbearable but it doesn't always help. The nausea is recent, I just started severe nausea. The weird thing is I did have several good days in a row over the past month and progressively gone downhill to where I am always in pain.

I appreciate others sharing their story, as sad as it is, it is good to know that this will end eventually (I hope!). It's also good to know that what I'm experiencing could be "normal" for cdiff recovery. My next step is to start probiotics. I can't really tolerate yogurt. I was eating that when I got out of the hospital but all of a sudden it started bothering me, but then again, everything bothers me now.

[Bobbie]

needhelp,
Everyone gave you good info.

I'm not impressed with your primary care physician. Why should you have to go to the ER or Urgent Care where you take "pot luck" re. docs
I would see a good GI. Call your local AMA or a teaching hospital for a referral or if you know any nurses, contact them. If you can't get in right away, ask to be put on a "call" list & then call back every 4 or 5 days and check. Be polite but persistant. Others on this site have had better luck with infectious disease docs.

You need a doc.'s help to determine if you still have C diff. or perhaps IBS -- which l out of 5 people with C. diff. develop. (I am one.) See FAQ-The Three Day Rule and FAQ-IBS. Also see FAQ-C. diff. Tests.

Clindamycin was the first antibiotic linked to C. diff. Try to avoid taking it again. Many times, penicillin (a lower-risk antibiotic) will work on bacteria in the mouth. See FAQ-Antibiotics for more info. on antibiotics, try one of the medical web sites lised in the first forum (PLEASE READ BEFORE YOU POST), or call your pharmacist.

If you are hospitalized again (God forbid) ask the nurses (& the docs.) to wash their hands. If you are courteous, many will do it. Many people come out of the hospital with yet another infection "picked up" in the hospital.



.

[TheVike]

3 day rule is the best hopefully for all of us!

[needhelp]

I just wanted to post an update, I have been suffering with what appears to be PI-IBS symptoms since my recent bout with cdiff.

I have not had pain for 3 days now. I feel like I could end up being one of the lucky ones who was cured with one course (10+ day) on flagyl and no relapse (knock on wood). I have suffered terribly since I finished the flagyl (10/5/08) but occassionally would have a calmer day. I feel so good about having 3 good days in a row.

The same day my GI tract started feeling better I got a bad cold, bronchitis, etc so I am hoping it doesn't turn into anything worse. I imagine my immune system is suppressed from the infection?? I typically don't get colds.

I might be speaking too soon but I will take a good day over a bad one anytime! Of course I am eating very carefully.

I am learning so much valuable information here and I am passing it onto everyone I know! Thanks to everyone who has shared their experiences and advice. I will continue to update on this site and try to help others who need it.

[Bobbie]

needhelp,
Glad you are doing better. We are all terrified of another infection. I went to a mtg. last night. I fractured a vertebrae in my back 5 wks. ago, & before I decided to stay, I went into the tiny room (private -- only 7 of us came) & said, "Anyone sick?" A bit extreme, I am usually not that germaphobic (go to church, movies, etc.) but it's important I don't get sick now. I have asthma & osteoporosis & other health issues & have been able to my asthma & other problems with aerobic exercise -- can't do it now. Docs. warn me not to cough too much or hard or I could break a rib. Great -- just what I want -- more negative advice.

Be sure you get your flu shot & check with your doc. re. a pneumovax shot. It protects against some of the strains of pneumonia --- but not all.

Most infections are viral. See Infections- Resp., Sinus, Ear, Bronchitis, Strep, Misc. for some home care hints. I do the saline irrigation (I know it's "icky,") twice a day -- more when I have an infection. Nothing is as "icky" as C. diff.

Thx. for the thx. Pls. post now & then to encourage others. We can always use help on the site. Many pledge they still stay "forever" but don't. Two authors promised to write books about C. diff. but didn't. Some return with, " I don't know if you'll remember me or not, but you helped me several years ago, & I have C. diff. again." Right!

When you have reached the 3-mo. mark, pls. post in Success Stories our most positive forum. Try to avoid antibiotics if you can. We wish you the best.

[ericam]

Try calling the GI's office and speaking to his nurse (not reception) tell her you have had a positive c diff test and are beginning to feel it coming back. I was told by my referring doctors nurse that they couldnt get me in til Feb. I called and gave the nurse my story and I was in 3 days later! Good luck!!

[needhelp]

Well, that was pretty stupid on my part to think I was cured after one week of feeling well...or was it? You want to feel optimistic after feeling so paranoid and pessimistic for such a long time.

I surmise that I was having PI-IBS symptoms after my diagnosis of cdiff (9/22/08) finished flagyl on 10/5/08. All of a sudden, the pain in my stomach and intestines went away last week, the nausea went away, I was feeling good, except for this cold, bronchitis, etc.

This morning the pain has returned, not really D, but the famous smell and some blood. I won't panic yet but I will call for a referral to a GI (finally) since I haven't seen a dr since I was released from the hospital back in Sept. The problem I have where I live is you have to call your primary for a referral and hope he/she will give you one, then the head of the GI dept has to go over your records and decide whether or not you get an appt with a GI dr. So ridiculous!

This disease is wretched!!!!!!!!