New to Forum, but not to c diff, questions

[Shazza]

This is my 3rd bout with this stuff over a period of about 11 years. The first two were from antibiotics, keflex, clindamycin, and the 3rd was a relapse from the 2nd. I have been clear for probably 5 years, always taking probiotics whenever an antibiotic is needed for me.
I woke up one night recently at 3:30 am with the horrible, horrible pain. Then the D started, and I was sure what I had right away.
The weird thing is, I have not been on an antibiotic for over a year, nor have I visited anyone in the hospital, or been around anyone that is known to have c diff. Is it possible I have had this all along but without symptoms?
I spent all day in the Urgent Care, got the script for the flagyl and came home. That evening they called and said my white cell count is up and that we probably are on the right track with the diagnosis. Two days later they call and say my c diff test is negative????
I am sorry, but I KNOW that can't be right. Not to be too graphic, but the pain, the bloody mucous, and the smell are all too familiar.
I guess my question is, do most people get pain?. I mean horrible pain? My daughter who works in the ER in another state, said most people don't say that it hurts really bad, when they come in with the big D and it's c diff. But I swear, I thought I was gonna die, it was so painful I was drenched in sweat, my hair and nightgown were wringing wet. I also thought I was going to lose consciousness, literally. My legs were weak and shaky, still are a bit a week later.
I am scheduled for a colonoscopy after Thanksgiving weekend.
I am afraid that my colon is damaged from this disease. Will they be able to tell? Can they diagnose any remaining c diff with this test if the meds don't kill it? Can this cause something like ulcerative colitis?
The sample I gave was all bloody mucous, bright red and slimy, the Dr. who saw me could not believe how it looked.
Does the colonoscopy hurt? What kind of information do the results give you?
I think that is all the questions I have for now. Sorry so many.
I am looking forward to participating in the forum, and will be reading all I can. I also will answer whatever questions I come across that I can, and certainly will offer support and my sympathies to all who are fighting this.

Sharon

[Nancy1]

Sharon,
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.

You ask a lot of very good questions. It is rare but not unheard of to get cdiff without taking antibiotics. My guess is that this is what happened to you, rather than your having it for a long time without symptoms. There are a lot of false negative test results for cdiff. You know your own body best, so if you think you have it, you probably do.

I had a lot of pain with cdiff. I was misdiagnosed for a month, with endless D and endless pain and misery. You have my sympathy. I always had a lot of blood, with every relapse and some in between.

If you have a colonoscopy while you are on Flagyl, or soon after, I am not sure how much it will tell you. I had a sigmoidoscopy, which finally diagnosed my cdiff as pseudomembranous colitis. A colonoscopy would also tell you if you have p colitis. Or inflammation. I had a colonoscopy some years before I got cdiff, and it didn't hurt much at all. The prep was the worst part.

Sorry, I don't know the answers to the rest of your questions, but there are many good folks here who may be able to help you. Good luck. Let us know how it goes.

[carrie]

Is there any chance it could be the norovirus(previoulsy known as norwalk). Prior to having c-diff I had it 4-5 times. I remember one time waking up in the middle of the night with really bad cramping and then having to hit the bathroom as quickly as possible and then remaining there for the next several hours. It can hit anytime anywhere. My friend was at the mall when it hit. I work in a care centre and it is highly contagious. The nurses always know it's starting because it is also very foul smelling. As for the blood and mucus that is not a symptom so that would also make me very concerned. I do hope you are feeling better soon. I have a really bad cold right now(worse than I've ever had). I think Cdiff and the antibiotics do crazy things to our immune systems.

[Bobbie]

carrie,
I agree with you. Many yrs. ago, I had an "an abnormal" pap smear. I had been on antibiotics for a sinus infection. (This was when I could tolerate antibiotics.) A nurse told me that antibiotics can affect "every mucus membrane in your body." They did another pap several weeks later, & it was normal.

Prior to C. dff., I was very healthy. Since having it (lst time 4 yrs. -- from l993-l997 but extenuating circumstances & again in l999, I've developed many health issues. Some could be related to genetics & aging, but I feel many are directly related to having C. diff. for so long.

[Bobbie]

Shazza (Sharon),
I agree with Nancy. It would be unusual to develop C. diff. again after such a long period, especially since you haven't been on antibiotics recently or been in a hospital or nursing home. We have one poster who developed C. diff. without taking antibiotics altho. she had been visiiting a relative in the hospital. She, too, had a recurrence after a long period, but again, this is rare.

Ther are many false negative with C. diff. (See FAQ-C. diff. Tests.) I believe there are a few cases where C. diff. is implicated in IBD or Crohns, but, to my knowledge, not many. These are medical questions so ask your doc.

I, too, had a lot of pain with C. diff. Afterwards, I developed IBS. The symptoms are similar to C. diff. (See FAQ-Three Day Rule & FAQ-IBS.) About l out of 5 develop IBS after a bout with C. diff., but since you haven't had C. diff. for so long, this, too, would be unusual.

A colonscopy can determine many things. The worst thing about it is the prep. You can either take pills & some fluid or drink gallons of a horrible substance called "Colitely.) You will be "out" during the procedure. Go over all this with your doc.

[meaece1]

This is my 3rd round of c diff. The first two times I had it after Keflex and a Z-pack. This was about 5 years apart. Three years after the last occurance I developed c diff WITHOUT taking antibotics. I was not in a hospital or nursing home. I am a healthy 30 year old woman with no other health problems except reflux. I was on Prevacid, which I have found out can upset the GI Flora and if you still have some spores harboring in your interstines all hell breaks loose. This has been scary. I only thought you could get this from being on antiboitics. I, like you, woke up in the middle of the night with the big D and the kind you don't forget. I went to the Dr and he said probably not but tested me anyways and it was positive. My suggestion is to stay on top of it....it can happen!

[DonnaCN]

Hi Sharon,
I too developed C-Diff without Antibiotics and without visiting anyone in the hospital. I had D for two weeks and then developed a very high fever and extreme stomach pain. Went to the hospital (where I stayed for 6 days!) and they finally diagnosed me with C-Diff. I was put on Vanco, Flagyl, Benco and heavy pain medicine. The doctor released me after 6 days where I went home to about 10 days of Vanco and Flagyl. Went back to work and then had a relapse. Same problems -- severe pain, D and fever. The GI doctor who I was referred to gave me an 18 week course of Vanco where I eventually wean off them. I am into my fourth week now and am still having digestive problems.

My only hope is that after the 18 week course I am back to normal. However, this doesn't seem the case for many folks on this forum. Oh I love this forum which I found after the first bout. Very informative.....

Best of luck. Donna

[TheVike]

Gotta be totally honest in that i had NO abdominal pain whatsoever just the endless D, fever, sense of out of it, VERY high WBC, and the ONLY pain was the god awful nausea and desire to sleep that is all BUT was more than enuf pain as is in this regard! I felt tlike this for weeks straight and then off and on for over six months!

[klt03301]

Hi Shazza. I'm so sorry to hear you're going through this. You did ask some really good questions that I'm unclear about at this point, myself. I got C Diff while in the hospital from hysterectomy and antibiotics in 2/08; stopped Vanco 4/08. Suffered for some months thinking I still had it, but 3 different labs said I didn't. Later had some good months and about 1 1/2 months ago got really sick. No D, but the mucous you were describing and very nauseated. I've been in pain throughout my C Diff and recovery at different times.

I took a sample in and got my results today. Negative for C Diff or toxins, but white blood cell count is "moderate". GI doesn't think it's a big deal, but I do, so I see him next week. I've never had mucous and wasn't as nauseated with C Diff as I have been in past 1 1/2 months. It comes and goes.

Now I'm wondering if I have ulcerative colitis. My dad had it, but he was a heavy drinker. I drink no alcohol. If this is what's going on, why would I get it now? Does anyone know if you can have a moderately high WBC just due to inflammation? Does it mean that I still am fighting an infection? Could I still have C Diff and it's a false negative? I DO NOT HAVE D, ever...I'm at the other extreme.

I'm SO confused.

Wish I could help you with your questions, but I see my GI next week and I'm going to ask for a colonoscopy. I don't want to do it, but I need some answers.

Please let us know how your colonoscopy goes!

Karen

[Shazza]

Well I had the colonoscopy and the procedure was a piece of cake, however whoever said the prep sucked is exactly right.
I hope they got a good look because NEVER EVER again.
sorry I have been away and haven't answered, just been really busy.
Anyhow the doc said he sees no colitis, which is awesome. He told me to take probiotics every day to try and keep the C-diff away.
I have a list of helpful tips for anyone who is going to do the colonoscopy. I wish someone would have told me ahead of time. LOL.
Anyhow, it sounds like good news. I had finished my flagyl about 10 days before the procedure so I hope that didn't make anything too hard to find.

[needhelp]

Shazza, I hope you are feeling better! I am glad to hear that they did not find colitis on your colonoscopy, did they find anything?

Actually, I have a colonoscopy scheduled in a couple weeks and I am scared about it. I do not look forward to the prep whatsoever and the paperwork said that I would be sedated, but awake. I am not interested in being awake, I will not even have it done if I am going to be awake so I will need to call them about that.

So, I would appreciate any helpful tips that you can share with me regarding the procedure/prep. You can PM me or share them here if they aren't too graphic. Thank you.

[bpagan]

The prep is the worst part. You should ask to be totally sedated...unconscious. That request should not be an issue with a sensitive GI. There are also different preps. Check to see if you can get a choice and ask which requires the least volume of liquid you will need to drink. Colonoscopies are life savers and should not be feared. You'll even get pictures to show your grandkids. :-)

[maryinflorida]

You are sooo right! The prep for the colonoscopy is the worst part about it! I have had a few (colon cancer in the family) so here are some tips:

Start the liquid diet 1-2 days before the actual prep day---the less you have in your intestines during the colonoscopy the more the doctor will see.

Despite the instructions on the jug, the Golytely taste better if not too cold and if you drink it as fast as possible---do not sip!

Tell your doctor you don't want to see anything or remember anything.

It gets easier after the first time---except for the prep part!

Good luck!

[Bobbie]

I would like to know who discovered an named Golytely -- he/she was a sadist.

Pills plus fluid are usually easier to take altho. some docs. still insist on Golytely. May they have to drink it themselves!

[needhelp]

I haven't filled the rx for the prep kit yet but here are the directions. I have to take 2 tablets (bisacodyl) and drink some stuff called "halflytely". It says to take 1 Ducolax at 5 pm. and mix the halflytely solution by adding lukewarm water to top of line on bottle, shake to dissolve powder. It also says this solution may taste better chilled.

At 6 pm start drinking 1 (8 oz) glass every 10 minutes. (but it doesn't say how much there is)
At 9 pm take last Ducolax tablet.

Now this sounds to me like I would be up all night in the bathroom. I don't know why I couldn't start it earlier in the day.

I finally got things settled down in my gut and now I have to go on a liquid diet and sit in the bathroom, once again. I just know this will stir things up again. Last night I finally ate a green veggie (peas) without side effects, I am so excited!

BTW, I called them today to explain my fear of being awake during the procedure and they said they would give me enough anesthsia to relax me but I would not be asleep. I might just cancel the appt.