cdiffsupport.com

[Bobbie]

Gemstone - Wendy,
Greetings to you in Belguim. & welcome to the suppport site. C. diff. has become a worldwide epidemic, but few seem to care -- expect those of us who have C. diff -- or have loved ones with it.

I agree with you and repeat what Fire and Roy said. It's been 10 years since my last bout with C. diff. (l999); my first bout lasted 4 years. I've never been "normal" since although I never (repeat never) had GI problems before C. diff. Now, good days, bad days. (See FAQ-IBS & FAQ-Three Day Rule.) I gave up on deleting different foods from my diet. I enjoy the good days & try to ignore the bad.

We went to the UK for two weeks to see my eldest son & family the end of August -- 2 wks. -- long flights, long airport stays, eating the wrong foods, drinking wine, stress of traveling, five flights of stairs to navigate, three little kids, etc. Didn't have a problem. Came home, "ate right," etc. & had problems off and on since. Go figure. I have lots of stress here, however (elderly, ill mother, other problems).

Best advice: Ignore if possible. If not, contact your docs. It could be something else. Exercise if possible. For pain, get a heating pad. It's been my best friend since l999 and my first bout of C. diff. Lie on your side in a fetal position and use the heating pad on your stomach. (Get one with a "auto. turn off.")

Remember, everyone is different. Do what you feel is right for you.

And, wash your hands! All the stores & other businesses here now have alcohol dispensers everywhere. Great idea for viruses, but it doesn't work against bacteria.

[dawnie31]

thanks everyone for your support; I am "glad" to see that Wendy is from belgium and that I am not the only one in europe to suffer from this bug. The problem is that my GI thinks it is not normal to have such symptoms after Cdiff, I asked him about PI IBS and he told me not to labelled my symptoms under IBS. He also told me that Cdiff or tonsilitis are the same, once the bacteria is gone, no more problem should be seen... He never told me to wait or that the symptoms will end with time, so i don't know who's right; Maybe he wants to be sure that I have no other problem to conclude with PI IBS, which is rather professional but not really reassuring.

[beth22]

If you are malabsorbing fat this could definitely be causing a lot of your symptoms, so wait to see what the result of that test is. You can look on line and see what the symptoms of fat malabsorption are - I think they are similar to yours and could be part of the problem.

[roy]

[Gemstone]

Thanks everybody for welcoming me to your site. Dawnie, whats the latest news ? Cant believe that your doctor compares C Diff to tonsilitus !! Of course you get after effects including P.I. IBS, which I think that half of us here on this site suffer from after this horrible bug. I hassled my doctor to take more stool tests after C Diff, as I was sooo stressed out that it had returned again. It took 3 negative stool tests before I realized that the doc was correct in telling me that I now have P.I. IBS !!

There is something that you can take for your stress, I found that it helped me a lot, its a mixture of plants called " Bach Rescue Remedy " you can buy this over the counter at the chemists shop. I still take it now if I have be be somewhere early in the morning or take an early plane as I always think Oh no... Im not going to make it if there are no loo's around, then of course the stress begins.
I also agree that heat calms your stomach. I usually fill a hot water bottle and put it on my tummy for a few hours, anyway now the cold weather has arrived I take it to bed with me as well !

I still dont have a normal stool, but doc says it can take months or years before the gut flora gets back to normal.

Let us know how you are getting on and dont despair, you WILL get better with time.

[dawnie31]

I saw the GI professor last week and he decided to test me for SIBO (here one doctor who have heard of it, wow!) , I'm doing the test wednesday. The thing is, if it turns out to be positive he will give me antibiotics and I am scared to death to swallow one more abx pill... My thoughts are shared between the will to finish with SIBO (if i have it) with another course of abx and the fear of relapsing again. I drink infusions and tea and I also have a heating thing for my stomac when it hurts and it eases the pain and the stress a bit, but it is ephemeral. I realized that my current GI was not totally aware of his job, comparing tonsilitis and Cdiff and saying that the gut flora rebuilds itself within two hours... He explains that babies came with no gut flora and that tow hours later they have one. The professor I saw told me the contrary saying that a damaged gut flora does not come back miraculously eating vegetables and fruit and has to be cured if necessary... I think I will follow his advises. I asked him about the abx used to treat SIBO and he assured me that they could not give me a relapse but I doubt, as I relasped 7 times without taking any abx and relapse after a colonoscopy. It seems that the least thing that detroys my flora gives me Cdiff...

[beth22]

I took a course of Xifaxan for my SIBO because the bacterial count was extremely high. If your test comes back and is not that high, you might ask the doctor about treating it with probiotics, diet, etc. I had already tried this and it didn't work for me and Ikept getting worse. After one course of Xifaxan I did feel better and was able to eat a few more things, but I still had SIBO, but only one third as high a bacteria count. I was 150% - off the chart actually and it went down to 50%, which is still SIBO, but much less. The Xifaxan did not cause a relapse of c difficile, but unfortunately a few months later I took Cipro and it did.

[klt03301]

Just my 2 cents...I go to Duke Hospital and get excellent care there (though I'm 99% sure that's where I picked up my C Diff infection). My GI said the breath tests are notoriously known for giving false negatives and positives, so they no longer use them. They base SIBO on symptoms. She offered me the same med, and I came home and researched it a bit. Right there on the abx pamphlet, I saw where it can cause C Diff. I specifically asked her if it could cause C Diff again, and she was truthful with me when she told me any antibiotic could. I'm not trying to scare you away from it, and I know it's helped others here. You will have to do what you feel is best. What I felt was best for me was to give it a little more time rather than take the abx...it was a rough 3 months...rough...but it cleared up on its own. When I went back to see her for follow up, she asked me what I'd done to get better. I told her it was most likely time, better nutrition, and I did double my probiotic (though I don't know that helped.)

Wishing you the best whatever your decision is!

Karen

[beth22]

What Karen says is true. I tried the diet, probiotics, etc, but in my case it didn't help because mine was one of the highest counts the doctor had ever seen. The breath tests are not uniform. I was lucky and had it done at the hospital where they first came up with it - it was a hydrogen lactulose test and they are really careful about reading the results and doing the test. They do many each day - but all facilities are not like this. Nonetheless, I waited 6 months before I took the Xifaxan and I only did it because I was getting worse instead of better. I think it is always best to try and fix things with diet, probiotics, etc. if you can. It sounds like where you live they do not know much about SIBO and I am not sure how accurate your test would be. It is also possible that the bacteria I had in my small intestine was residual c difficile and the test does not tell you which bacteria is there, only if there is any and how high the count is. The Xifaxan is used to treat c difficile - I just took it as a chaser to vanco, but it can cause c difficile in some people just like Flagyl can.

Make sure if you get a positive test, that it is SIBO and that the count is very high. Dysbiosis can also be cured by doing a special diet - they have it listed on the IBS websites - it helps for c difficle too - you don't eat the foods that the bacteria feeds on. Good luck.

[dawnie31]

hello,

I did the SIBO test today and it came back more or less negative, it did not stay to 0 and came up to 5 my doc interpreted it as negative enven though the nurse who did the test seemed to say that when it is negative for sure it never comes up and stay to 0 but when it is positive it come up very much higher. In a way I am glad it is not so high, it allows me to stay away from abx. So it seems I have just a slight dysbiosis, or IBS, I an still waiting for the malabsorption tests and other blood stuffs, if everything is negative I will begin to think it is IBS and learn to live with it, and try homeopathy things.

[Mommy23]

Good new, Dawnie. I think it is wonderful that you tested negative, now hopefully you can stay off the antibiotics long enough to rebuild your flora.
If it helps any, I'm going through the same thing, testing negative but having most of the same symptoms. Very frustrating!!
I truly hope you start to turn the corner soon.

[dawnie31]

mommy23 thanks for your support,
What symptoms do you have exactly? My symptoms are really debilitating since i don' know what is causing all this and that all the tests are negative, I re test for C diff and it is still negative. Every morining when I wake up I had cramps and have to go to the bathrooms before and after eating. Then I go 3 or 4 times a day with loose stools exactly like with Cdiff but whitout mucus and blood. I still feel nauseated and I feel the right part of my colon bloating and uncomfortable all day. I am trying to take pentasa, but I see that I reject the medication in my stools, as i swallow it, it is little grains and I see them intact in my stools... and it did nothing obviously.
Wendy, as you took pentasa too, I was wondering if you noticed that too? I would like to know what were or still are your symptoms exactly during recovery, because it seems for most of you that IBS are some low stools or cramps which come one day and then resolve and go back to normal untill it comes back a few days or weeks later. however in my case I have this continuously without ANY improvement or good days, I have it every day, every day I feel bad with nausea and about 4 loose stools, the first in the morning is almost normal and then it liquefies... I have been off vanco for 5 months now and I am feeling desperate, I don't know what to take or do, as any medecine did nothing at all. I am still wondering if Cdiff is still there and that it is undetectable in my stools. May i ask another course of Vanco just to see if it improves or not? Moreover I am still loosing weight and can't get a pound even if I am eating great, I am strugling with all this for a year and i think i am going to enter into a deep nervous breakdown as anything is done for me. I feel that my recovery if it is a real recovery and no more c diff is really weird and hard to bear. I think I am definetly missing good bacteria in my Gi system but do they come back one day without a stool infusion, as it does not exist here, just waiting? Thank for your answers

[Mommy23]

Dawnie, I pm'd you.

[Nancy1]

Dawnie,
Check out the Ten Commandments for Surviving Cdiff and Coping with Cdiff, both in the FAQ section. I took Paxil for depression during my cdiff. My father and my sister both died during that time, and I'm not sure I would have made it without something to help me. Also, if I remember correctly, this class of antidepressants is supposed to help D.

You've probably tried phenergan and/or zofran for nausea, but thought I'd mention them again just in case you haven't. Hang in there.

[roy]

Dawnie
What you describe and 4 times a day sounds like typical IBS,
I will be a little blunter than Nancy.
Depression seems to be common in c.diff victims, It's probably part of the disease!
A little chemical help during the rough times can work wonders.
Don't be afraid to ask for help if your feeling depressed.
Banishing depression is just as important as banishing the "D"

Roy
_________________
Anything I post is just my own opinion from what I have learnt, I am not qualified to give advice you should check with a doctor before trying anything I suggest, I am in the UK and somtimes what I say is not in the US language!
so beware!