Newbie...depressed, anxious, mad...etc

[carrie]

when I first had c-diff(after taking a round of Keflex) I tested negative after negative, I knew something was wrong but there was no convincing the doc. Finally after 10-12 days the pain was so bad and there was an increase of b and M. I went back to the doc for the 4th time and insisted on another test, I was never so relieved to get a positive test. Prior to that I thought I was going crazy as I was sure I had c-diff but couldn't understand why it would not show on any of my tests.
I must say though, after I finished a pulse dose of vanco I swore c-diff was back but I never got a positive and things eventually got better.

[nolagirl]

Hang in there girlfriend. I am in my 30's and healthy as a horse. I was Rx'ed Augmentin for a sinus infection at the end of December 2010. BAM!! I got C Diff after being on the Augmentin. I have been to the ER and scared my family nearly to death. :) I have relapsed 3 times. I have been put on 21 days of Flagyl (nearly killed me), went on Alinia and now I am on liquid Vanco.

I know your pain. I have cried many tears. I keep having flashbacks of my PRE-C DIFF life before I took that damned Augmentin. I wish I could go back in time and change things...but I know I can't. I think I coming to a place of acceptance now and knowing that I just must determined to conquer this evil disease.

Cry and do whatever you need to do to feel better emotionally. Feel free to Private message me anytime you need a friend to talk to...You aren't alone. The people on this board are wonderful and have been such a lifesaver for me. :)

[JenniferH]

Thank you all so much.

This is one of the most frustrating illnesses a person can have. I have been driving my family insane. I have been yelled at by my Mother, who said, "You're testing negative, GET OVER IT." She even said something like "It's like you want to have CDIFF or something" It so depressing to test negative, and everyone trusts the results but me. My primary care physician even told me that I shouldnt be this sick with Cdiff, and didnt want to fill out some FMLA paperwork for my job (FMLA protects your job if you use a lot of sick leave.) He thought that I should be over it already, and treated me so awful. I was in tears, I have never been treated so badly. He finally filled out the paperwork, and I'm going to find a new primary. My GI specialist seems like a good doc, and set up the colonoscopy right away. I'm not looking forward to it, but I know this is the only way to get some answers. I'm suffering from extreme depression right now, and I do the same thing, I think back of my life before C diff, and how happy I was. I see people laughing, having fun, smiling, and I want that so bad!! All I do is worry about what I'm going to see when I use the restroom. Sorry TMI, but that's how I feel. I too, wish I could go back in time, and wish I never took any antibiotics. It really angers me that Docs dont warn about the dangers of cdiff, and how important probiotics are. UGH!!!
I am so happy to have found such a wonderful group of people. So sad we had to meet under these circumstances. :(
I have one last question; Why is it that these test are so inaccurate? I even asked several people about the accuracy, and I have been told over & over that its accurate. I just can't believe that. And I see that I'm not alone. The type of test they perfomed was the A & B toxin, immunossay..Anybody know anything about this particular test? They also did a stool culture. I have taken a total of 4 tests now. The very first test was the only one that was postive. The last 3 have been negative.

Thank you thank you, thank you!

[wildwind]

The testing for CD can be frustrating. Even though on Vanco I got sicker, I knew I was still sick and tested negative, three days after the end of the Vanco course I tested positive. Some think that the Vanco and/or flagyl may mask positive tests and that is why they suggest your doctor treat your symptoms. And also why multiple tests may be required, but I side with the treat the symptoms. We have way too much to handle and these tests are not easy, particularly for women. Many doctors have not seen the kind of CD we 'reoccurencers' have and cannot believe that a single course of abx cannot cure it. They find out pretty quickly that this is a very viralent bacteria, and tricky. It is believed that the spores 'hide' out in places like your appendix and when the environment in your gut is favorable, they launch out and wreak havoc. It could be that just in the amount of time it takes to get your sample to the lab, the remaining abx kills whatever CD is present.

If/when you find a GI or ID you trust, that understands this disease, they will not be reluctant to believe you and will know how difficult it is to treat. Perhaps the colonoscopy may give you and your physician additional information and shed light on some of your concerns.

No one, ever, in their right mind or out of their mind would wish for CD. That line of thinking is not helpful. It is the nature of this disease to prey upon our fears and anxiety. Talk to an understanding doctor about the emotional side of CD and don't be afraid to ask for something that can help, most find that if they can get calm, focused and as pain free as possible that it does make fighting it much easier.

Hang in there, and keep posting. If after re-reading the responses to your posts, don't hesitate to private message PM someone who seems to resonate with your condition. I found great comfort from several of the members here during the worst of my illness...and continuing. Sometimes you can vent a little more freely one on one :) just a thought. The people here really care and understand...I care.

[beth22]

I relapsed about 6 or 7 times and between all of these relapses I tested negative. The last relapse that I had on Dec. 1, 2009 I took 3 samples in. I knew I was relapsing, but the first two samples were negative and not until I had the blood and mucus did the last test show positive. By that time, things were really bad and the vanco 250mg 4 x per day took about 4 days to kick in. I had gone over 100 days at that time since the last bout of c diff and was really depressed that I relapsed.

About a month after finishing vanco, I felt that I was relapsing again and this time I didn't even take in a test, but started the vanco and it got rid of the symptoms on the first day. That is when my GI decided to so a stool transfer on me. Just too many relapses and the tests do not show the c diff toxin until it is a full-blown infection, at least not for me. I suspect that if the infection is low grade, it does not show up. I have also read that there is another toxin that they have isolated, which the report called toxin C, which the tests don't detect. C diff never showed up on any culture test that I had. But, my doctor says I am about the worst case that he has seen and he has seen many. So we did the stool transfer and time will tell what the outcome will be.

I think that is why Roy posted that sometimes they treat on symptoms alone. In some people you simply can't wait for a positive test result if they are very ill and have a history of c diff.

What you are feeling emotionally is pretty much what I have been through too and I suspect most people on the site. I don't think age matters. I am in my fifties and I feel exactly the same way. I go out to eat or get together with friends and see all the things they can enjoy and put into their mouths and I feel really depressed. Because I am older, the weight loss has taken a toll on my skin - it just hangs there like someone who is in their eighties and I still can't seem to gain it back. I can't stand to look into the mirror anymore and none of my clothes fit me. My doctor told me to work out with weights for my arms. Easier said than done with my energy level, but I will try to do it.

If you get too depressed, read the success stories section. It gives us all some hope. We are all here for you - pm us when you need to.

[lawc30]

I know how you feel about the lack of support. Halfway through my 7 month c. diff. bout, I started having Post-partum depression compounding the mounting depression with the c. diff. I started having panic attacks and constant anxiety that sent me to the ER a couple of times, plus the ER visit with the C. Diff. My husband was supportive, but although my Mom came to help with our new baby, she told my Dad that she thought I was making stuff up to get help. When I went to the OB to ask why I was so tired, (Could it be too much, nursing while having C. diff.?), she asked me if I might be suffering from hypochondria! I've since gotten a new OB.

I was referred to a great Infectious Disease Doc who took care of almost all of my treatment. I relapsed twice, but I only had the initial positive test when I was diagnosed. I was told that perhaps the bacteria wasn't producing enough toxin to be detected while on the Vanco. At one point, I almost had a colonoscopy and my doc consulted a GI, but my gut took a turn for the better. A vanco treatment of 250 mg 4x per day that tapered over a course of weeks and consistently taking Saccharomyces Boulardi finally took care of it. Three months later, I got pregnant with our daughter and oddly my IBS started to ease up a bit then. Three months after that I was able to eat a bit of chocolate and pizza! Oh, how I craved pizza! Mexican would still throw for a loop for a while, but I am now enjoying it again! I have been c. diff. free now for 2 yrs. I am thankful for those that were supportive and to my Father in Heaven! I pray that you will be well soon.

Laura

[Vikingjeff28]

Amazing, all of our stories are so identical. I have tested positive 4 out of 5 times but i KNOW when I have it. MY GI will treat the symptoms and test 2-4 weeks after my last vanco. MY ID(that I just dumped) wanted to test me during vanco treatment and I politley refused and said you know it will be negative, no point. My GI NEVER tests during vanco but will do a colonoscopy so he can see what is going on in there. People at work thought I was depressed and I said "Pain 24/7 has a tendency to do that to you, get me out of pain and the depression will go away. I got help for the pain and anxiety and it helped tremendously while batlling C diff. They see most cases where people take a round of Falgyl and get better then we come along and some inexperienced docs don't understnad what we are going through. We are all here for ya, hang in, we believe and understand EVERY word you say. Show your relatives this board, I showed my wife way back when and she went "WOW", I never realized.

[Mommy23]

Like Jeff said, if you have unsympathetic family members or doctors encourage them to read through this board, they will soon find out we're not all crazy!

With regards to testing, I feel that although this illness has been around for many years, there is still much that the doctors don't understand and that goes for testing. For whatever reason there just isn't an accurate test. I met with the doctor who discovered cdiff a couple of weeks ago, Dr John Bartlett. Out of the many tests I've done he said that only one was slightly accurate, (I'll check through my file to find out the name). You will soon find that you will become the "expert" as I'm sure you are already aware. Keep searching for doctors until you find one you are happy with. Frustrating, but they work for you, not the other way around. Feel free to PM us, like wildwind said....I have found true friends on this board who genuinely care and have supported me, without them I'd be lost.

[deekay]

It is such a comfort to know we are not going through this alone. I have just tested positive again for the fifth time in less than a year. My life has become this disease. I tested negative twice during this time when the vanco was still in me. So yes don't even try the test when you are on the antibiotic. You are not alone with the depression, with the crying. I know there are people sick with such serious cancer etc, yet it is really hard to have a disease that no one is quite sure what treatment will work. I am trying to hang in there. What other choice do we have? But the comfort from those who are also going through it or have gone through it, is just immeasurable. Thank you all again. DeeKay

[JenniferH]

I'm back from the colonoscopy. The results are mild colitis, he's doing a biopsy to determine, what kind of colitis, and Monday he is going to prescribe meds....does this sound right?

Do I still have c diff? I'm sooo confused.

[beth22]

The type of colitis for c diff is usually a specific type, but there are others. When I had a sigmoidoscopy they tested me for microscopic colitis and collagenous colitis which comes about after having had another infection. I tested negative for them. There are meds for colitis, sometimes just high doses of Pepto Bismol is used to treat microscopic colitis I was told. Hopefully the biopsy will tell what type you have and the doctor will be able to treat you.

[Mommy23]

Did you ask if you still had cdiff? Isn't there usually evidence if the cdiff is active? Obviously testing it is most accurate.
I just had a sigmo done today, he said there was not evidence of cdiff, but it doesn't mean that it may still be there higher up in the colon so I don't know what to tell you!!

[JenniferH]

Ok, so the nurse calls me and says that I'm neg for cancer, and everything else they tested me for. I have no active inflamation.
I told her what do I do from here? S said she has no answers, and the Doc has to call me back on that.....UGH!!! I have never been so frustrated in all of my life!!!
If I am negative for everything, then what is wrong?....I'm anxiously awaiting the doc to call back. :( Am I just healing? Is there a special diet I should be on? Sigh...

[Vikingjeff28]

I understand her frustration as I am 20 months into this thing and no end yet. My GI could not get me in today so my precious wife called my friend who is a doc(I don't like to take adavantage of him even though he tells me to call him) and said my hubby is REALLY hurting bad, left him at home laying in the floor, can you see him? I was in at 2:00, got everything I needed. What really helped my wife understand what I am going thru is reading this board. I think in the beginning after about 2 months she thought I was half crazy. I simply said "How long have you known me, 28 years?. How many times have I acted as if I am dying and my guts are coming out? This is real unfortunately". I feel so much better tonight than this morning. Hang in there and just keep pressing on until you get what you need. The doc today was so sympathetic and said"You have had this 6 times over 20 months, I would be crazy by now. We are here for you." Thank GOD!

[wildwind]

If you want to see if and/or how your diet is effecting your symptoms, I would recommend starting again at the BRATTY diet (Banannas, white Rice, Applesauce, white bread Toast, green Tea, and Yogurt...unless you cannot tolerate any of these). Then, slowly add in bland foods, like baked potato (no skin, little or no butter, try low/no fat chicken broth instead), baked chicken breast with little or no seasonings, white fish (not oily like tuna or salmon at first but halibut or cod), cup of noodles (at first I would scrape off the vegies). Then if those are tolerated, work up to some whole grains like oatmeal, well cooked green beans, zuchini, or carrots (don't start your raw vegies for a long time....wait awhile before gassy vegies like brocoli and califlower). After a few weeks, if your symptoms are starting to subside, try gradually to add new foods, keeping in mind, if any of the foods aggravate your symptoms, go back until your system calms down and start again.

Sometimes it seems that curbing our diet is one of the most difficult in determining what is making us worse, and also difficult in that eating is a very social event, and it can determine our moods. But if you think of it this way: it took awhile to get this sick, it took even longer to get rid of the bacteria, we need to give it two to five times longer than we were sick to re-introduce foods. And yes, food is mood altering (I have to have my chocolate)...ask my husband :) It is a small price to pay, to take it very slowly until our systems learn how to digest food properly after a shock like C Diff. Just like a new baby learning to eat solid food, you don't plop down a steak, french fries, and cheesecake for their first week and expect their tummies to digest it, it would be a nightmare. You are literally a toddler, learning how to eat solid food again.

This also goes for probiotics etc. Go easy, see what works. Probiotics can make you feel much better, or they may aggravate your symptoms. Trial and error is the key, what works for me may not work for you. It really must be trial and error for y-o-u, don't dispair, think of it as a new self made prescription for healing. I've looked everywhere, there is no one sure fire diet that works for everyone.

Try to be strong when you are with others who question, or bully you about your diet, don't be tempted too soon to eat whatever looks good, it tastes great, and you feel so excited to eat it, then you pay....yikes! Most of us have gone through some very sad Holidays staring at our favorite foods that we can't eat, feeling sorry for ourselves. We've been there, it sucks, but not as bad as full blown CD. It will get better.