Cdiff & other medical problems

[pam2738]

Hi all,

I have a question that I'd especially like to ask of those who have been Cdiff free for awhile or who have been doing well on meds, maybe on a long taper.

What I am curious about is whether any of you have noticed other medical problems since having Cdiff. Problems that ostensibly would NOT have anything to do with Cdiff, such as heart problems, arthritis issues, any neurological problems, "female problems",or any blood components such as cholesterol, triglycerides, lipids, etc etc, that are out of whack. For me, I am having GI issues having to do with absorption but I think it's a no-brainer that that is directly due to Cdiff. But on the other hand, I think that given the intense nature of the disease & how sick we get when having active Cdiff, that I would not be the slightest surprised to know that it has its effects on other body organ systems that linger even after Cdiff is either in remission or quiet. I just find it hard to believe that a disease that ravages a critical organ like the large intestine just goes away without doiing some damage elsewhere in the body.

If any of you are dealing with o ther medical issues AC (after Cdiff) & are willing to share, please do. I don't think we will get this kind of information from our doctors cause frankly I think many of our doctors do not have as much information as exists here on this forum. At least that has been my experience.

Pam

[Bobbie]

Pam,
I won't list all that is "wrong" with me since having C. diff. Some of it is definitely related, some possibly, but other problems could be tied to genetics or just plain aging. Also, stress doesn't help anyone, & as everyone with C. diff. (or other illnesses knows) illness can be very stressful.

But what's done is done. Best to eat right, exericse if possible, & keep busy. Why let C. diff. ruin any more of our lives than it already has? If we do, we are victims twice over.

[pam2738]

Bobbie,

I agree with you on all you say, but I am not asking out of a "worry mode" or anything similar. I am not obsessing over what may be wrong with me or what might go wrong. The question comes purely as a form of research or information gathering. I would really like to know & I think the doctors would like to know -------- & maybe what information we can glean here might be made available to those who some of our members are seeing who in the forefront of treating Cdiff. All to benefit other Cdiff patients.

So I would really like to know about those things that have afflicted you siince Cdiff, both those that you are pretty sure are Cdiff related & those that might be.

Believe me, I am not stressing & if I was, right now it would not be Cdiff, it would be the fact that I was just diagnosed with glaucoma.

Pam

[fire7163]

Pam:

I've experienced medical issues that I didn't have before the arrival of C-Diff. My blood pressure became elevated, my blood chemistry HDL, TRi and ect went elevated, had a bout with gout in my fingers, muscle spasms, and photophobia along with fatigue. None of which I had before. As my GI said " If you didn't have it before C-diff, then it's most likely related ." The side effects of this are amazing and then it leaves you with IBS.

[jennie]

I think it is correct to say, having read many posts on this subject, that many of us experience all sorts of "other" things that go wrong, after c.diff. Some minor, some more difficult. GERD / nausea and UTI's seem to be what bothers most of us most of the time.

Fire7163, is HDL cholestrol? Mine has shot up to 6.1, and I never had this problem before, it was perfect when it was tested before. I am given a Rx for Lipitor, and have not filled it as yet, not sure if I want to. I do find it odd, do not eat red meat, eat low-fat, very little cheese, eggs. Your comment is interesting, if I am understanding that this is what you are seeing too?

[fire7163]

Jennie:
exactly right...I never had gout, photophobia, blood pressure or cholesterol issues until c-diff. I eat a healthy diet and due to my job stay in fairly good shape. The Doc's all agree that it's most likely the C-diff is responsible for all of the issues in one way or another. It makes sense when you have a serious infection in one of the largest systems and organs in your body. The body is going to react, especially when a system goes out of balance I see it all of the time in trauma calls. The difference is the C-diff is more of a long term course and allows for more lengthly and systemic effects to appear. I have been C-diff free for the last 4 months and we'll see what happens this time. The Doc's seem to think the other issues will resolve themselves in time, and I can lose the treatment drugs except for the IBS...that may be another issue...So my course of action is now vitamins, eat healthy, think positive and exercise daily.

[Christina]

My cholesterol shot up as well. Just prior to C-diff (3 months before) I had my cholesterol tested for life insurance. It was on the 160's which was the normal range for me. Five months later and two months into C-diff, it shot up to over 200. I haven't had it checked since which was 2 years ago now. I guess it's time to recheck it but have been putting it off as I can't stand the thought of having to possibly swallow another pill everyday. I have a whole bunch of health issues that I never had prior to C-diff. Who knows if their connected or not but I plan on talking to my GI DR. when I see him in 2 weeks to see what his thoughts on it may be.

[puremess]

I had a blood test done when I was on vanco and my liver functions numbers were high when it always been normal. I have a blood work coming up it will be interesting to see if the numbers came down.

[Connie]

C. diff was the first bump in a long road of medical issues for my son. Nine years later he is dealing with it again, and it sort of feels like coming full circle on something. My only comment is that, rather being a cause or trigger, in some cases maybe c. diff develops as a result of other, underlying, immune-related problems. It seems to me that many people have mutiple apparently "unrelated" immune system issues. even in the absence of measurable immune deficiencies.

[Bobbie]

OK. Here's my litany of health problems. Before C. diff., I was healthy with the exception of allergies & sinus problems. Since l993, I've developed:

C. difficile (currently inactive) twice (once for 4 yrs.).
IBS
Acid reflux/hiatal hernia (2002 - 3 yrs. after last bout with C. diff.)
Osteoporosis
Osteomyletis in lower jaw l993 (broken teeth from grinding; root canals, extractions, bridges, & braces; numb on left side of jaw)
Idiopathic microhematuria (unexplained blood in urine)
Bilateral arterial stenosis (significant blockage in one artery leading to the kidneys; some blockage in other artery)
Hypertension
Atopic dermatitis
Pneumonia – 5 X
Sinusitis (3 sinus surgeries)
Allergies & Asthma (asthma improved except w. resp. infection); nodule in right lung.
Floaters & flashers, cataracts, and dry eyes. Recurrent kerititis rt. eye. Torn left retina (9-02)
Raynaud’s Syndrome (rarely have symptoms) & posible Lupus (A & A 320)
Periodontal disease (improved); oral infection several X a yr. Recent root canal.
Insomnia

C. diff. caused by IBS. (No GI problems before C. diff.) Acid relux/hiatal hernia could be related. Osteoporosis runs in my family, but I was diagnosed with it right after I had C. diff. the first time & was relatively young (52). (It showed in an X-ray; by that time l/3 of your bone mass is gone.)

I doubt if C. diff. caused my eye or dental problems altho. I ground my teeth when I lst had C. diff., broke 2 teeth, & the oral surgeon botched pulling one, severed nerves, & I developed osteomyletis. Kidney problems could be genetic. Hypertension probably caused by blockage in arteries to kidneys. Atopic dermatis possibly related to stress or allergies. I've had Raynaud's Syndrome for years prior to C. diff. -- possibly causes positive test for Lupus altho. have other symtoms.

Repeated resp. infections probably related to immune system (perhaps damaged after C. diff.?) altho. I had allergies & occasional bronchitis & "one spot of pneumonia" prior to C. diff.

I went to an immunologist years ago (after C. didf.) who told me I was such "a mess" I would get worse & eventually wind up on IVIG's for the rest of my life. I didn't see him again for years & the next time I went he told me my immune system had improved! Go figure.

My son had C. diff. twice. I feel it damaged his immune system & led to other problems but no proof!

I recently read an article on stress. It says (paraphrased) Long-term stress leads to health problems & compromises your immune sytem. It is related to heart attack, stroke, diabetes, bone loss, obesity, etc. I know it caused my insomnia.

Stress is certainly part of C. diff. As part of stress control, I exercise frequently, eat well, am involved in lots of activities, & try to stay away from doctors whenever possible.

It's difficult to prove C. diff. is related to other health issues, I doubt if most docs. care. They just "shunt you off" to yet another specialist.

[fire7163]

Bobbie:

First of all....wow !!! rough road

Talked with my Doc's and they both were quite interested in all of our simularites with symptoms. They're not willing to blame C-diff across the board for everything, but think it most likey does have some ties to each other. Sure aging can play a part, but not in 4 months and cause all of the effects we suddenly acquire . Have you ever considered posting a symptom survey that we could all weigh in on to give the Doc's some hard data to use ? It just might shed some light on the issues and give them a tool.

[Bobbie]

fire7163,
We've done several surveys on site such as types of probiotics, participating in publicity for C. diff., etc. We had a good turnout on a "group Email" to Oprah but no response from the TV show. Others have tried contacting various media -- little success altho. there were a few stories on some of our sufferers --our legislators, doctors, etc. The few of us who have been with the site a long time (esp. we mods.) are tired. We welcome anyone who wants to do something positive for C. diff. & its sufferers.

If you want to start a poll, go ahead. Hit "new topic," name it, fill in message, & then go to bottom where there is poll info. I doubt if much will be gained, but it's "worth a shot."

Personally, (& this is a non-medical opinion) I think the damage done by C. diff. is related to the antibiotic taken (if one was involved), the length of time someone has C. diff., & how severe the disease is. I've known about C. diff. since l979 when my son first had it, & it can be one ugly disease!

Thank you for pursuing an often dangerous professsion to keep others safe. I "feel" for the firefighters involved in 9-ll who died or are still suffering the after effects of their bravery

[fire7163]

Bobbie:

Thank you it's the greatest job in the world. FYI...I just talked with my brothers in FDNY and the predications for post 9/11 deaths from exposure to hazardous materials from the rescue attempts are staggering. Looking at possible numbers in the thousands of first responders who are beginning to and suffering the effects such as sarcoidosis of the lungs. It may well be that another major larger loss of life tragedy is unfolding before our eyes. Please keep my brothers and their families in your prayers. For my brothers " Fallen but not Forgotten "

[Bobbie]

fire7163,
I've read some of the reports. What a disastrous result of trying to help! Our prayers & thanks for you and other firefighters.

[jennie]

Connie, except that c.diff is categorically not an auto-immune disease, it is not the body attacking itself, it is a pathogen that sets in, takes over, and causes the damage. That, essentially, is the difference between c.diff, an infectious colitis, and IBD.

Cause and effect seems to be what we are talking about, because how come so many of us were perfectly well, and all this stuff that goes on after having had c.diff? Sure, almost no-one has 100% perfect health all the time, but if these were underlying issues, would we not have known something was up? Or you get something, and recover, not go on and get more things, to have to pop more pills for, and keep doing the roundabout of specialists?

It does make intuitive sense, as others have posted, how could we expect to not have this lack of physical balance, after having been ravaged by this exceptionally nasty bug.

And it is tough to deal with. We don't understand it, and few of us have doctors who yet understand it.

As Fire says, take vitamins, eat healthy, exercise daily, think positive.