c-diff or severe IBS

[seekingcure]

Well, folks, I've been off Vanco since November and have had progressively worsening symptoms the last week or so. Yesterday was really bad, with pain similar to what I had when I first started with c-diff, along with M and flecks of B. Today I'm a little better. Pain is not quite as bad. I'm not having D, but I didn't have it when I first had c-diff either. It was more a situation of feeling like my intestines were twisting and not being able to pass anything for about 24 hours (including gas).

As you all know, I've been through a lot of stress the last month or so with my mom's decline and ultimate death. Long story short, I'm hoping that stress has just brought on an unusually severe IBS episode. I haven't had this much pain since this time last year, shortly before I was diagnosed with c-diff.

My husband took a sample to the hospital lab for me tonight, after I finally got one of my doctors to order it. The GI wanted me to just wait and come in a week and wouldn't even order me a test. The ID did.

Hopefully I'll hear something tomorrow. If I'm positive again, it's time for a FMT. And even if it's "just" IBS, I don't know what else to do to make it better. I've been dealing with IBS for forty years now, but this seems different. Pain is constant, not relieved by an BM, whereas before it always was.

Feeling hopeless! Bea

[beth22]

I tested positive about 7 months after an FMT, but it was not the classic D either. I had some very stressful weeks and then got what I thought was an intestinal virus for 2 - 3 days, but I'm not sure if it was. Since I was going on vacation, I tested and the test came back positive. I tested again, same thing. By then the D had stopped and both my ID and GI said to treat it only with Pepto Bismol, which I did. I took some with lunch and dinner each day and went on vacation. When I got back I tested again and was negative. What I am saying, is that even if your test comes back positive, don't jump to treat it unless you have to. Look into the FMT. I just did some stool enemas at home after taking Levaquin/vanco in February and my D stopped after the first one and things improved after each one I did. All the stress may be catching up with you. I hope it is not c diff. Let us know what happens.

[Bobbie]

Bea,
I doubt if you have C. diff after all this time. You will find out when test results are soon. If positive, I would try a FMT. If negative, I don't know what to tell you. I know you haven't been happy with the docs. in your town - any chance you could see a GI or ID in a nearby city?

I know how hopeless you must feel - have "been there" and it's a horrible feeling.

You have been under a lot of stress with the death of your mom. As we all know, stress can do awful things to us.

Do the anti-spasmodics work for you at all? I almost lived on Bentyl the first couple of years I had C. diff. It's didn't help much but I didn't know what else to do.

Let us know about your test results. You are a great mod. and a warm, kind person. We wish you the best! Hang in there. Hope tomorrow is a better day.

[seekingcure]

Test is negative. Thank God for that. But still having pretty severe pain and now D. As much as I hate to admit it, I guess the GI is right and it is IBS. I did have diverticula on colonoscopy so I almost wonder if when I have these really severe episodes of such severe abdominal cramping without D, maybe I could be having diverticulitis. I did have a low-grade temperature Wednesday night, but it has come down.

The GI's theory is that my IBS is caused by a bacterial imbalance. That's why he wanted me to try the Xifaxan. He said if it helped for a few weeks and then symptoms returned, that would prove the bacterial imbalance theory. He wanted me to take a round of Xifaxan every month to six weeks, which, for one thing, I can't afford. I asked him to test for SIBO, but he wouldn't. I'd like to know if that could be part of what is going on. He also said that the FMT would probably be the only thing that would really help me; but, of course, I can't get one for IBS.

Bottom line, I'm on a bland diet for the next little bit until things calm down a bit. Don't really know where to go from there. I may try the Xifaxan or I may eventually end up trying some FE's on my own. I really feel in my gut that the FE's would be the thing to actually help me, but logistically, it's difficult for me to do them, as my potential donor lives out of town. Anyway, for right now, I'm relieved that the c-diff is negative.

Thank you, Beth and Bobbie, for holding my hand through this latest scare. Just having someone who understands means the world. You guys are all the best!
Bea

[Bobbie]

Bea, read an article about Xifaxan recently. Will see if I can find it and PM it to you. Think it was on one of the FB support groups. I was on it for 3 to 4 weeks before FE's. I know what you mean about cost. I am paying $l,700.00 a month for Forteo - and don't know if it will help me. Damn C. diff.

[beth22]

I tested positive for SIBO after my first colonoscopy transfer and took a round of Xifaxan in 2009. I had a lot of food intolerances that would give me D and after the Xifaxan things were a lot better. Unfortunately, I did not find out how long the effects would last, as I had to take Cipro for another infection and relapsed with c diff again and after vanco, got worse with the SIBO. I think being on the vanco for so long is what caused the imbalance in my case because when I took it two months ago the same thing happened. Anyway, the Xifaxan did help. A

nd I can also remember taking Xifaxan as a chaser to vanco after my big relapse in 2009 and I felt better than when I would just take vanco. I'm not so sure that you would have to keep taking Xifaxan every month. I see the doctor who figured out that IBS and SIBO are related and he did all the studies with Xifaxan. He wrote a book about SIBO and IBS. Anyway, he also has some dietary suggestions that help. I know that he also recommends digestive enzymes for some people. He is going to do an upper endoscopy on me in a few weeks and actually aspirate some fluid from my small intestine via duodenum to culture it and see if it grows out bacteria or fungus because yeast can also be a problem in some people. I just read a study about a doctor who did research on many IBS patients and cultured this fluid and many had SIBO, some had SIFO (fungal overgrowth) and some had both. My main complaint is so much gas and bloating, so hopefully the test will show what's up. But, SIBO (which is the dysbiosis your doctor is talking about) can cause D too.

Don't forget the mind-gut connection. Even before c diff, if I got very upset, I would sometimes get D. Many women get D around the time of their periods. All the stress you have been under could have affected your hormones and certainly the nerve endings in your digestive tract causing your symptoms. If you take a lot of probiotics, you might want to try and cut down a little or maybe try a different kind. One doctor told me it is good to switch around. My mom takes bacillus coagulans and does well with it. That one is supposed to be less likely to cause D. Anyway, just some ideas for you to think about.

If you do take the Xifaxan, after you finish, then doing FEs would probably be a good idea. I just finished doing some and they helped me after the Levaquin/vanco combo I took in February. However, they won't do much if anything, for SIBO.