can't take this anymore

[Vikingjeff28]

Have you ever taken Colestid(pill form or packets of Cholystramine you mix with water or juice?)? I took it for 2 months and it REALLY helped pull the toxins out of me and stop the D's. I was taking it with Flagyl, Vanco and Xifaxin at different times.

[beth22]

I took Questran last year and two days ago when they sent me home from the ER with no meds. It used to make me nauseated. However, my doctors don't give that until you've tapered down to two pills a day of vanco because it not only binds up the toxins, it also binds up medications. I think it might be a good idea when I get down to two pills a day - taking it in between doses. Right now I'm still afraid the vanco isn't working. Still passing bloody mucus, but I've only had one day of treatment, so I will have to give it a couple of days. Fever didn't come back though, so that is a good sign. I don't remember how long it takes for the vanco to kick in - I think it was 2 or 3 days though and I never had such a severe episode as this last one either.

[cindym]

Beth- If I can stay near well and not feel as rotten as with full blown cdiff and only take minimum vanco I prefer to do that than potentially bring about more problems through experimental procedures. I have been sick enough and prefer quality versus quanity at this point in time.

[beth22]

The problem is Cindy, I didn't feel well on the vanco either. I know what you mean about the experimental procedures and I guess I am paying the price for that too, although I think taking the cipro was my biggest mistake for something that was not that serious. My internist didn't think I would relapse after 7 months of negative tests, but obviously he was wrong. Hopefully when I am able to taper down my dose I will feel better. I think I did ok on two a day last year, but then I had better intestinal flora and that will take a long time to build up again. What probiotics do you take if any?

[beth22]

Feeling extremely frustrated. It just seems like I traveled down such a long road only to be put back to the beginning. Each relapse I've had was worse than the previous, and the knowledge that this will probably not be my last in spite of stool transfers and treatments just sends me into a depression. Hopefully I can try to taper successfully this time, but even that will be months and months. How do you all deal with this??? It's been more than two years for me now since this all started, maybe even longer. Very depressed. The toxin also gave me a horrible rash that won't respond to anything, so I'm off to the colon & rectal specialist. Maybe she can come up with some kind of cream. That's all I needed on top of everything else!

Any advice????

Beth

[cindym]

Beth, For the first 4 years of my battle with cdiff it was like living on a roller coaster. I finally figured out what sparked my symptoms and started avoiding them when possible. I stay away from all carbonated drinks, anything with acid in it (juices) and I eat few veggies and small portions when I do eat them. Salads are a huge no no and chocolate might as well be ex-lax! I, like you did not feel great on large dosage of vanco but did and do when needed take up to 4 (250 mg) per day to stop symptoms. I have had to do that several times after having antibiotics for surgeries. IT WILL GET BETTER. It just takes time and your learning how to deal with it. If it wanted to kill you then you would be dead long before now! I also have learned that vitamins and most probiotics are no no's. The only probiotic which I can tolerate (but still have frequency from it) is Primadolphilus Reuteri. It did stabilize my weight and I regained my appetite. I had lost 60 pounds at the time. I totally got tired of the constant roller coaster ride and finally my doctors have allowed me to find the lowest dosage of vanco to take to stay controlled. I have decided quality is definitely worth swallowing those pills and I pray everyday that something else will come along to wipe out the spores. Hang in there.......I am alive, doing fair (except for other health related problems) and determined to live my life in spite of the damn bacteria!

[beth22]

Thanks, Cindy. Hopefully in a day or so I can start the 3 x per day regimen. I see the doctor tomorrow. If I remember right, the twice per day was not so bad - I didn't get the stomach cramps with it.

Let's pray that someone comes out with something soon. The article several months ago which said that they have now learned how the spore is formed and something about its shell (can't remember exactly) said this info gave promise for new medicines to make the spore inactive or to disable it somehow. Let's hope that comes to pass.

[cindym]

Beth- After a very long taper I have been able to get down to only 1 (250 mg) capsule per day and stay feeling pretty good. However, on the 1 pill I have to be especially more dedicated to eating properly. Good luck! I found out the best thing to do is realize if it wanted to kill you - it would have and to just ride the wave and consider it a major inconvenience and continue on with life. I have good days and I have not so good days but one thing I have learned is to make each good day count! I will never take my life for granted again---- I suppose this is the hardest lesson I have ever learned! ha!