C. Diff. again and again and again

[rtrospect]

thanks Beth. I will ask about the pancreatic enzymes. I know not having a gallbladder can cause stomach issues, but would it hurt and cause "D"? I am going in to the Doctor today. He is squeezing me in. Since I don't have a spleen, infections can knock me down rather quickly. I have no idea anymore if this is c. diff., or lack of gallbladder, or stress, or even PI-IBS. I just know I want to feel better and right now it seems nothing is helping. I can't even drink room temp water without it causing pain. I looked back at my bowel schedule and yep, sure enough this all started about 5 days after my last dose of the vanco pulse.......grrrrrr, I just want to scream.

[AThurston]

I would feel like screaming too, hopefully you get some anwsers from your dr today. Have you heard from your stool test? Hang in there.....

[beth22]

I have a friend who had her gall bladder removed and she is unable to eat certain foods without getting pain and D, so I guess it is possible. She is supposed to take the enzymes too - don't know if she does or not. I also knew someone who had his spleen removed and could not eat red meat after that. I think the c diff just makes everything worse and as I mentioned, can cause SIBO, which gives some of the symptoms you describe. I would definitely check into the pain. Maybe the doctor can order some kind of scan. Good luck and let us know what happens.

[rtrospect]

I had been diagnosed last year with SIBO but the general consensus of the docs that I am currently seeing, is that the positive test result was most likely caused because of the c.diff. living in my gut. So far all tests they have done have come back negative. C. diff toxin tests, giardia, crypto, salmenolla and a few others, even a culture to grow c.diff. I took another specimen today and they are re-testing. I have had a couple negatives and then had them followed by positives, many times in the past. They also took blood to do a metabolic workup to check my kidneys, pancreas and liver. They are also doing a CBC to check for elevated white cells. They changed the antidepressant to one that supposedly has less side effects, so we shall see. They also gave me tylenol #3 for the pain. That seems to have helped today. The doctors I see are at a teaching university/hospital, so they seem very interested. Especially interested in the fact that I am not a "text book" case. Nice, I will be famous for being the 44 year old, caucasion, female with recurrent clostridium difficle infection and no one will ever know it was me......ah, fame.

[amyc]

Did they repeat the SIBO test? I've read on SIBO boards that quite a few people have had success with flagyl for that. There's the xifaxin (or however it's spelled) but flagyl is a whole lot cheaper. I think both can have some side effects, so maybe it would be worth trying flagyl if you get another positive SIBO test?

Beth, have you tried chewable kiddie vitamins? I love the gummy ones from Whole Foods. I take a kiddie gummie calcium + vitamin D too.

[Bobbie]

rtrospect,
When my (then 4 yr.old) son had C. diff. in l979, he was listed in a copy of GUT (journal for GI's) as the "interesting pediatric case in Omaha who almost died." Fame is hard when it's not the right kind. Am glad you've kept your sense of humor - so important when you have many health issues.

[beth22]

I tried Flinstone's chewables for babies and they still gave me problems. But, I am planning on trying them together with a Tums and seeing if that helps.

Flagyl alone usually doesn't help that much for SIBO - this is per Dr. Pimentel, who is the "expert" on it, but when taken in combination with Xifaxan it works better than Xifaxan.

What you say about the SIBO being because of the c diff still in you - you may be very right. After my first stool transfer, I tested negative every which way for c diff as well, yet I had horrible food intolerances (worse than now) and my breath test was one of the highest that Dr. Pimentel had ever seen - 150%. I took a ten day course of Xifaxan, which pretty much went through me by day 10, but after that my food intolerances got better and the breath test came back as abou 5 50% - still positive, but not off the chart.

About a month or 6 weeks after that, I got another infection and was given Cipro to take for only 5 days. My doctors thought that since I had tested negative for the c diff, I should take the Cipro alone and then the day after I finished, start 125mg of vanco 4 x per day. My dose for c diff had been 250mg tablets and I had never taken 125mg before. Well, about day 3 of Cipro I started getting really sick again and despite starting the vanco, I relapsed with c diff worse than I had ever had it in the past. I lost about 7 lbs in 2 days and wound up in the ER with D like 40 or 50 times a day. I had to start all over with c diff treatment. So, despite all the negative tests, including a c diff culture, those spores were still in there waiting for their golden opportunity which I gave them by taking the Cipro. I do believe that the breath test was so high because part of that bacteria in the small intestine at that time was c diff. It happened to another poster (mray) too and he relapsed shortly after the breath test was so high for him.

Last year, my breath test was positive, but only something like 39%. I don't know if there is still c diff lingering. Probably, even though the tests are negative. My GI thinks so too and wants me to do the stool enemas at home. I am waiting for biopsy results of an upper endoscopy that I had done last week to see if anything else showed up before I do this. He also mentioned a capsule endoscopy, but I doubt my insurance will cover it a second time. I had it done in 2009 and it did not show anything and cost $5000, but it was covered by the insurance. You need pre-authorization for it though. So, I figure I will try my luck with the enemas, but unfortunately, most things I have done to treat my c diff have backfired - I don't have very good luck. I know I can't go on with this discomfort all the time though. The thought of teaching another school year and not being able to eat, wondering when I can sneak out to the restroom, etc. is really not what I want to do again. So, I will be trying this unless my doctor comes up with some other plan. I, like you, don't tolerate meds very well, even children's dosages. I took Benadryl the other night - very small amount and it got me all shaky and loopy.

Hopefully, you will continue to feel better. Introduce new foods back slowly. Try one new thing at a time so that you know what is what.

[rtrospect]

My breath test last year was also very high but I still think it was the c. diff. I had been treated with the flagyl and the Xifaxan. Flagyl was one of the worst things I have ever taken....I got extreme thrush and yeast infections each time....blah! I like that Vanco is not systemic by means of the intestinal track, it doesn't absorb into the bloodstream when taken orally.

Beth, have you tried pulse dosing of the Vanco? If so, was it a long pulse? Have they given you any medications to help with the pain and the anxiety of this illness?

Right now it seems the Desipramine and Tylenol #3 are helping me and I just started those yesterday. Amazing!!! I had tried amitryptaline and celexa. Both of those were awful for me. I just couldn't tolerate the side effects. I also had been taking S. bouldarii and Culturelle, however I was just reading up on probiotics yesterday and learned that people that are immuno compromised shouldn't take them. Something like rebound infection? I don't know for sure but I am going to look into that further. Soooooo, I am going off my thyroid meds and all supplements until my bloodwork comes back. I am having serious issues with sugars right now....seems like ALL sugars bother me and of course after reading all the labels in my house, my thyroid meds and half of the supplements have sucrose, fructose, or lactose in them. Heck even the lactase enzyme I was taking has mannitol in it. So now I can't even take the lactase to enjoy a piece of cheese....shoot! I am tired of feeling like yuck yuck and if I am going to go down, I am going down clawing, bighting and fighting. A sense of humor is a MUST or you will go crazy. C. diff and the mess it leaves afterwards is a lot to take in, mentally and physically. Each time I go through treatment I just assume I will get C. diff again. After all, statistics say this is so. I expect the worst and hope for the best. That way if the worst never happens again, you are good to go. Just think, those of us typing on this forum are SURVIVORS....regardless if we have beat this illness or are still fighting for our lives, we are still surviving....some don't. Coming to this forum is a great distraction. THANKS!!

[beth22]

Your breath test could also have been high if you had yeast overgrowth. I was told that either bacteria OR yeast can give you a positive result. Did you take anything for the yeast or thrush? If not, you might still be having the sensitivity to the sugars partly because of that. There have been studies done that showed that people taking Flagyl for c diff had fewer relapses when they took DIflucan along with it. A few posters took Diflucan or Nystatin after c diff antibiotics. I did a stool culture specifically for yeast, but none showed up for me. You could ask your doctor about doing one, although I am not sure how accurate they are.

I did a vanco taper and relapsed when I went down to one pill a day. I took vanco with a Xifaxan chaser and still relapsed. The only thing that helped me was a stool transfer via colonoscopy. I had one via ng tube first, and still relapsed. Wound up having a second FT because I was given Cipro 7 months after the first one and relapsed and started all over again, only worse (something to keep in mind when taking future antibiotics). Anyway, that was the only thing that helped. I have been off vanco since 2/10, but have all kinds of IBS issues. Had low grade c diff for a while and treated with Pepto Bismol. The tests have been negative for over a year now, but my GI thinks the spores may be contributing to the ongoing issues - activating just a few, etc. He wants me to do the stool enemas at home. I am planning on doing so. Had some other tests done first to make sure it was nothing else.

I never tried the pulsing. Others have had success with it. It might be something to discuss with your doctor as well.

[rtrospect]

It's been a while so I thought I would take a peek over here on this site. I have been sick...again and again, since I last posted. I had serious symptoms late february,early march. I had contacted my ID doctor and he wanted a specimen. Well long story short, it took two months of pure misery to give them the stupid positive result they wanted so that they could give me the meds. I took dificid in may, another round in june and just finished another round in July. I am currently taking Xifaxan as a chaser to the dificid. So far it seems to be working. I have successfully eaten salads, veggies and even some junk foods without any problems at all. The longest I went without my symptoms was 3.5 weeks after the second round of dificid so I am hoping this time it works. I have changed doctors and now have one that is willing to treat my symptoms since I generally test several negatives before I get a positive....even when in full blown symptoms. If I should become sick with c.diff symptoms after this xifaxan chaser, my GI doc will then set up the process for the FMT. I so didn't think I would be dealing with this so long. started out in 2007, then 2008, 2009, 2011, 2012 and now 2013. Sadly I am starting to feel like an ole pro at this. ugh. I hope everyone else is having good health.

[beth22]

I share your frustration. I have tested negative for quite a while now, but have had lingering food intolerances and other symptoms that seem to have gotten worse, especially when stressed. These past couple of weeks I had a lot of stress and in particular last Saturday. Well, Sunday I got the D and took it to the lab. It was negative. But, since then there have been more episodes, and like you, I usually don't test positive on the first specimen, so I took another one yesterday. The lab won't do it because there is a new rule that they will only test for c difficile every 7 days. My doctor is going to talk to the lab director tomorrow and they are saving the sample. I spoke to them myself and asked them if they were willing to take the responsibility if I have c difficile but can't begin treatment for 4 or 5 more days because they won't test. They didn't have an answer.

I'm sorry you have had such a rough time. Xifaxan is also used to treat IBS and SIBO which may account for your being able to eat more foods. In 2009 after a FMT I was left with bad IBS/SIBO and I took Xifaxan and improved with being able to eat more foods than before. Unfortunately a couple of months after that I took Cipro for another infection and started the whole thing over again - like pushing the reset button, so I know how you feel. Hopefully, you won't need the FT, but good that your doctor is willing to set it up for you. Let us know how things go.

[getwellsoon]

So sorry you both are having such a bad time with these on and off symptoms and Cdiff. I too have some but not as bad as you both. It is 2 yrs for me that I have been suffering and I'm so tired of it. The nausea continues and no one seems to have an answer for it. The Zantac mostly controls it but I still get it sometimes in the morning, sometimes after I eat. Until they really know all the ins and outs of Cdiff and gut problems I don't think they should make generalizations. I'm glad Beth, that the Dr. is fighting for your specimen to be tested. I also test neg. but don't feel well alot of the time and can't eat like I want to. I eat a lot of carbs and have gained weight. I know some of you are the opposite, have lost weight. All we can do is hang in there and hopefully one of these tests will turn up something. I will also go for the FT if I relapse again. Hope you both feel better. Carol

[rtrospect]

I was able to eat most everything for 3.5 weeks after the 2nd round of dificid and even prior to the xifaxan, so I am gonna give the dificid more credit then the xifaxan. Although I will take good days not matter what which treatment works. Crossing my fingers and toes as well as knocking on wood.....DAILY!! :)

[Bobbie]

Sounds as tho you are doing well. Crossing fingers and knocking on wood are typical behaviors for someone who has/had C. diff. - do anything that gives you comfort.

[rtrospect]

Bobbie, I hope you are doing better. I know you have had a long go at this illness. You have been a source of great info and I appreciate your posts and comments.