Looking for Input

[Andi]

My doctor's greatest concern is that if I was unable to tell people of my condition I may be given some type of medication, such as an antibiotic that would cause the "bad" flora to flourish. This is because I have gotten to the position that if I have one more serious episode of colitis we will be removing my colon. My doctor is very versed on C-Diff and he has a group of 12 partners with which to consult. He is also networking a crossed the US in an attempt to find a way to help me since he states that in all of the C-Diff patients he has treated he has never seen one present like me. As far as his concern for contamination, he is very concerned that within the next 10 years we will be seeing an outbreak of C-Diff in a section of the population that is similar to me and not the typical 1) hospitalized patients, 2) just recently hospitalized, or 3) was on antibiotic therapy within the last 2 months to as far as 10 weeks. I don't know if I stated it but I had not been in the hospital and I had not taken any antibiotics in about 5-6 months. So he has simply stated to me and I am just repeating what my doctor said to me so this is not meant for anyone to take as medical advice. But he stated that we supposedly knew how this was transmitted and to who but now people like me are getting it and they don't know how, so to use the old rules of how contagious it may or may not be is not wise. We know that if you were a certain population in a certain area then precautions would be taken around you by say medical personnel, so it makes sense now that we are unsure exactly how it is being transmitted to this new population set to take the strictest precautions. And I don't know about anyone else but the last thing I want to do is give this thing to my 7 year old son or my 73 year old mother. It's easier to just use the bathroom in the back of the house.

[Mia-Mia]

Andi i never looked at it that why. i uderstand. Good luck to you. We are all different and always need to follow our doctor advise just as you are doing. Good luck . Try to persue the Stool infusion. Maybe it sould be a good option. i know how you feel i was in the hospital to with an enlarged colon so take care,

[fire7163]

I can relate to where you're at. We fought my C-diff with relapses for almost 14 months and finally had surgery where they removed 10 1/2 inches and did a resection.

Fire

[anlockwood]

I would say I am a little surprised by your drs response although each case is unique. I know that CindyM on here has had this ongoing for 7 years plus and has some very near death relapses and they didn't decide to remove her colon, instead she just manages the c diff as any other chronic condition, with meds daily. I would also insist on trying a stool transfer first before removing the colon but that is me. Removal of the entire colon is a very serious surgery and I personally would not want it done unless I had tried the other options first.

Amanda

[Hua Kul]

I wonder if there is a wide range of toxin strengths that would cause different levels of colon damage in different individuals. The first time my wife had cdiff she had a colonoscopy and the doctor didn't see any evidence of colon damage even though multiple lab tests were positive for the toxins.

--Hua Kul

[beth22]

I was told by my doctor that some toxins cause more damage than others. I tested positive for toxin B last time and it caused a lot of damage very quickly - within 24 hrs or less. My doctor wanted more than one test, thankfully. The one on the first day was negative - I had already started with some D*. The next day no D*, but by evening mucus with blood and a positive test. The next morning, that is, about 36 hours later had I not started vanco I would have been in the ER. Toxin B supposedly is much more damaging to the colon than A and I'm guessing there must be various substrains too.