Recovery after self-treating with probiotics

[atsilvan]

I am NOT suggesting that anyone else try this. I AM interested to know if anyone else has had a similar experience. I searched for weeks through the web and could find no one who had the infection and recovered without taking any antibiotic drugs.

In October 2009 I went to the ER after a bout of diarrhea which ended with passing bright red bloody mucus. (I had not had an antibotic for almost a year nor had I been hospitalized.) I would not have gone to the the ER except for the blood and my age (70). Stool testing revealed C. Difficile toxins and occult blood. Since my stool sample was taken after 3 days with no BM's, I think the occult blood can be explained as a residue of the blood previously seen at the time of the diarrhea. By time I saw the GI Dr., 2 plus weeks had passed when I did not know that I had the infection. I really did not feel too bad until after I got the news and was told I should take Flagyl or Vanco, then get a colonscopy done.

I knew about C. Diff. as I had a friend who had had a bad case in 2005 (hospitalized twice). He took both Flagyl and Vanco, felt terrible from both drugs and still has diarrhea frequently, treated with Questran as needed. I researched it at that time and discovered probiotics which I began to take regularly (Culturelle), well more or less regularly, always if I had to take an antibiotic (sinus infection, etc.) I will assume this friend left some spores in my bathroom, and that that exposed me to C. Diff. There is a study underway in Georgia which I got a letter about to learn more about community-acquired C. Diff. I am waiting for a call from them, and hope the study results in learning more about how this disease is spread.

So, I told the Dr. I wanted to self-treat with probiotics, no drugs. I felt my case was mild and had what I considered some very good reasons for opting out of the antibiotics. I had varying complaints, abdominal discomfort, multiple bowel movements, some bloating, gas, an occasional peculiar odor not really associated with BM's, and only a few isolated instances of true watery diarrhea. (At the same time I was having symptoms of GERD and started Prilosec.) I have taken a variety of probiotics including Culturelle, BioGaia Reuteri, Florastor (only a few of those), Align (2 months) and Primadophilus Reuteri (3 months) which I am taking daily at this time. I have only taken recommended dosages. I also used Metamucil fairly regularly (one moderate dose per day max.) I started making homemade yogurt and had that or Danactive or Kefir daily. Efforts to link my symptoms with diet were to no avail. But I did start to simplify my diet by having only the cultured milk product in the mornings, Ensure for lunch and a "healthy" home-cooked meal with vegetables and a little meat or chicken for dinner. Avoided raw stuff and most fruits (not really sure why - it seemed the thing to do). Tried to up my fiber intake.

In December and again in January I had stool cultures which were both negative for C. Diff. and blood.

It has been several weeks since I have had any real C. Diff. lower GI symptoms. I will date my "recovery" to about 6 weeks into the Align. Gas is rare, no bloating, rare abdominal discomfort, BM's are 1 or 2 a day, some looser than others, but mostly normal for me. I am still on my "liquid" diet for 2 meals, but eating most anything for dinner, including beans, some fruit, ice cream, nuts, etc.

At one point I had a urinalysis done by my GP (ER said they had done one - "normal" - but they had not. The urine indicated urinary tract infection, but I had no symptoms. Cipro was prescribed, but I didn't take it. A trip to my GYN (trying to rule out female problems as a cause for abdominal discomfort) resulted in yet another urinalysis (again positive for something). So I went to a urologist who cultured the urine, found no infection, but did find a little blood, had a cystoscopy, then an abdominal CT scan with no abnormalities found. I have still not had the dreaded colonscopy or upper endoscopy which I will do at some point. But I feel like the C. Diff. is past. I do have other health concerns, but my belly is not one of them at this point.

A long story... perhaps it belongs with the case histories. Does anyone else have a similar story?

ATS
Female
Age 70
Atlanta, GA

[Vikingjeff28]

I know of no one who had even moderate C Diff to heal without Flagyl or Vanco, you are fortunate indeed.

[Vikingjeff28]

i guess because we have all been hit so hard by C diff it is hard to fathom you could beat it without drugs...

[beth22]

There was another woman who posted here a long time ago who beat her c diff with high doses of Florastor. I spoke to her on the phone and she never had a relapse. Unfortunately, I got this information after I had already started vanco. Wish I had tried the probiotics first! I had symptoms almost identical, although not as severe, the year before and they went away until I took another antibiotic. Hindsight is always 20/20, but I am still dealing with the consequences of multiple courses of vanco. Don't know if my gut will ever be the same. For mild cases, I think it is definitely worth a try.

[Mommy23]

I think you are well on the road to recovery and very lucky indeed.

I too, wished I had listened to my "gut" and not treated as my symptoms were similar, but I had a very terrible pain in my side which really concerned me. I went two weeks and tried using floraster but no change, so on my doctors advise took vanco and my life has never been the same. Hard to say if I would have beat it without the abx.

I was curious as to why you are still on a liquid diet for your two meals.
Do you absolutely need the colonoscopy? Are your doctors pushing for it, with very little symptoms you might ask why they feel its required.
The colonoscopy made things even worse for me.

Roy,
I think this should go in "case histories" too, as many people read through these as they research and try different methods of treatment.

[atsilvan]

Reply to Mommy23

I am still on the half day liquids partly because I'm lazy and it's easy, but deep down I am probably still concerned that something I eat will cause a problem. After obsessing for months over my bodily functions, it's hard to give up the habit.

I need the colonoscopy as I had polyps 12 years ago. I really dread the prep, and feel it might undo my progress. I also need the upper for GERD. Simple to put me to sleep and do both, according to the Dr.

Not sure if this post will end up in the right place.

[fire7163]

The prep for the procedure is is worse than the scope and ENT...enjoy the nap...trust me after 6 in 6 months I do have a little knowledge on the subject. I know that I'm repeating myself, but the hardest thing about C-diff is accepting that you're getting well. What that means is eating normal foods, exercising, trying to regain your life pre-C-Diff. At some point you have to let your body take back over. Your immune system needs to be challenged to strengthen itself. The same is true for for GI system. It's totally your choice to either be a victim scared to take a chance, afraid to leave your safe place, or walk right out into normal life activities and see just how much that you can recapture. It may not be pretty, will take time and energy...there will be bumps and bruises along the way. I'm talking from personal experience...my choice was...well let's just say I was a attack Firefighter/Medic before C-Diff and I'm still a Attack Firefighter / Medic.

Now it's your choice

[beth22]

I agree with what Fire says about strengthening the immune system and so on. The problem with me is that every time I try to eat fruit or a different vegetable or dairy (although I haven't tried dairy in a while) I wind up with cramps and D*. Do you have a good way of introducing foods. I think my digestive system lost the ability to digest or handle the foods that I haven't eaten in so long. Is the key or trick to just start with one spoon a day and gradualy build up, or what? I am sure many others are wondering the same thing after being on such restrictive diets. Any suggestions would be most appreciated.

[atsilvan]

While some are looking to the future, I am looking past at age 70 and have no hopes or big dreams or even much to do except take care of myself and my cat. Making my dinner is the high point. I just want to be/feel OK during my going down time.

[Vikingjeff28]

I had a spoonful of my wife's chili the other day. It tasted so good! I stopped at one tablespoon to ensure I did not wind up in the ER, it worked!

[fire7163]

I found that a spoonful or 2 works fairly well in introducing different foods back into your diet. If you suspect that you've become Lactose intolerant, try using Lact-aid before eating or drinking dairy. You'll be able to tell very quickly. Remember moderation to begin. Keep a journal of what works and what doesn't. You won't believe how good food can taste...Vikingjeff I also missed Chili...it tasted incredible, and I didn't even mind the heartburn...Firehouse Chili...go figure ??


Fire

[Kathy George]

I agree with Roy!!! 70 is not old..... My God, I'm 68 and look forward to many more years. I'm still eager to learn and try new things. Go easy on yourself. You are as young as you feel. Remember POSITIVE THOUGHTS ONLY!!!!!

[paulah]

in response to anyone being cured w/out antibiotics...I got cdiff while doing a bowel prep for a major operation...long story which I'm not going into....after two relapses, one course with flagyl and vanco and the second with flagyl and some other drug used for TB which turned all my body fluid orange and I can't think of the name..I still tested positive for cdiff and i still had the symptoms. A dr who had alot of experience with cdiff in older patients started me on the chlos. 4x a day and probiotics only, no antibiotics. I also started eating alot more. i was nauseated all the time, so i ate something every two hours...i would try to eat 3000 calories a day! with only all the calories and only the powder and probiotics, within a week I could tell I was over cdiff. Never had a relapse, either. It has been 7 years. My guts are still mucho sensitive but whatever.....before everyone starts to post and say they can't eat with cdiff, believe me I didn't feel good either. but watching what I ate while having cdiff didn't help, I fugured i may as well give my body the nutrients it needed to fight the cdiff. This is just my case history, i am in no way recommending it to anyone. Listen to your dr!