Am I on the right track?

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prblmacd
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Posts: 2
Joined: Mon Jul 02, 2018 8:37 pm

Am I on the right track?

Postby prblmacd » Mon Jul 02, 2018 11:59 pm

Hello all. First, I'm glad I found this site. Even though a lot of information is a couple years old, it has helped me a lot. I have read the rules about posting as well as a lot of posts. I think I have a pretty good grasp of what's going on but have some questions.

I'm a 47 yo male, very healthy otherwise.

Sometime in May I started having a pain in my right side/hip area. It's sharp and annoying depending how I sit, but not debilitating. I still have it now. By late May my lower abdomen feels tight like I did too many sit ups. I feel bloated a day later. I have lower back pain. I develop a low grade fever off and on, hot flashes, the shakes. I get this horrendous shooting pain all through my gut whenever I bend over or get up. I go to the ER. A CT scan shows part of my lower intestine is inflamed and I have free fluid in my abdomen. They dope me up for the pain and send me home on Cipro. I see my GI two days later who switches me to Vanco. He says it's probably C-diff and orders the labs. The lab screwed up my first stool sample. We find this out later and the second stool sample, after I've been on Vanco a week, comes up negative for C-diff. I continue on the Vanco and my primary doc prescribes Dicylomine. 3 days after I finish the 10 day course of Vanco, I relapse. The pain isn't as bad and no fever but I have the hot flashes again and my stool ranges widely from just water, to D, to very narrow. My GI is on vacation and his partner puts me back on another 10 day course of Vanco, orders another lab test to be taken before I start the Vanco, and recommends S-Boulardii probiotic. Both times I'm on Vanco I feel better after a day. Both good lab tests come back negative for C-diff. I finished that second 10 day course a week ago and haven't relapsed. No more D but things still aren't "normal". And I still have mid to lower back pain, the right side/hip pain, And some days of feeling tired I also now have the hot flashes and prickly skin feeling which seems to be par for the coarse.

My GI doc is convinced this was C-diff but both my tests came back negative. And the last time I was in an hospital or on antibiotics was 6 months prior. He says that's too far off to be related and that I contracted it somewhere else. My hospital visit was for severe food poisoning (below). My wife and I both had it and I had bad skin itching, redness and bad reactions to wheat 10 days after. It takes 2-3 hrs after eating for me to react but I still think that's were it started. You can read about that below if you wish.

I wanted to know how long do most continue taking the S-Boulardii? Once a day or twice? Now that I'm feeling better I've been taking it once before bed as it makes me a little nauseous and my GI doc didn't have much to say about its use. His partner recommended it instead. And how long have others continued the Dicyclomine? It does seem to help things move better but makes me dizzy and sleepy. I have a call in to my GI with both of these questions but haven't heard back yet. I may need to find a GI more familiar with C-diff or who has a better after care plan. Mine was thankfully quick to react but his follow up treatment plan is non-existent. I asked what happens if I relapse again and he just said more Vanco or a "stronger, more expensive" antibiotic. The thought of another relapse scares me and that's hard to do.





My food poisoning.... In mid December, 2017, my wife and I had very bad food poisoning from a top sirloin she cooked. It looked fine, smelled fine and the date was good. She's picky about her meats. We suffered for 11 hours with more water coming out of us than we could put in. We ended up in the ER, doctors were dismissing this as run-o-the-mill food poisoning until the labwork came back. I had few white blood cells in my stool. They said it was food poisoning with viral gastroenteritis. The wife wasn't as bad as I was. 3 bags of I.V. fluids and a bag of antibiotics each and we were released. They gave me Rocephin. Even our dog got sick as he got some of the trimmings from the meat. Poor guy suffered with D for two weeks until we figured it out and got him on some antibiotics.

10 days later I had a feeling of something stuck in my lower esophagus. Another ER visit, no antibiotics this time but they gave me meds to relax my system until I felt I could drink easily. Later that day my scalp started itching. Each day this progressed to my hairline, my neck, shoulders, sides, stomach. I'd get red patches that itched. Two days after the second ER visit I had the same feeling of food stuck but 7 hours after eating, so nothing could be stuck. I see my GI doc for the first time. Endoscopy yields nothing unusual other than potential scarring from acid reflux that may have been aggravated causing the "stuck food" feeling and restriction when swallowing.

I also end up seeing an allergist and immunologist for the red itching episodes 2-3 hrs after eating. Full panel reveals I now have a medium allergy to tree nuts, soy and dairy, and a severe allergy to wheat. I've never had this problem with foods before. And this only happens 2-3 hours after eating. Most food allergies I hear of are almost immediate.

I think it's all connected and that my system has been weak and suffering these past 6 months until I finally developed the right symptoms pointing to C-diff. Any thoughts on this?

Chris

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Am I on the right track?

Postby beth22 » Tue Jul 03, 2018 1:27 am

Hi Chris and welcome to the site. I see you have already read the first forum for more information. You may have picked up the c difficile in the ER. I had that happen to me when I sat in one with my mom. I had been c diff free for 4 years. It is quite possible that is where it was and since your immune system was down because of the food poisoning/virus, the infection took hold.

I have many things I still can't eat and I first got c difficile in 2008, but I did have relapses and I also have SIBO from all the antibiotics I took. The medication that your doctor is referring to that is pricey is probably Dificid, which is in my opinion a better medication as it targets the c difficile and spares other gut flora much more than vancomycin. I have some here at home in case I need it. I am colonized with c difficile and I test positive on PCR for the last 2 years, but negative on EIA meaning I don't have an active infection. You tested after you started vanco and that is almost sure to give you a negative result. It is very rare to have a positive test when taking it, although if the infection is very severe and the dose too low, it can happen and has happened to a few posters.

I could not tolerate Sacc. Boulardii. It gave me tons of gas, looser stools and even a rash. I did try other probiotics, but because I have SIBO, many of them did not agree either. I found VSL#3 and take small amounts of that. If what you are taking agrees with you, I would stay on it. Some people have been helped by drinking kefir that you can buy at the market. I could no longer tolerate yogurt or dairy, but others can. Any infection, even the food poisoning or virus that you had can trigger food allergies I was told. My husband's cousin had e-coli and has been gluten intolerant ever since and never was before. She was told it might eventually go away, but it didn't. Try to avoid those foods that contain what you can't eat. I know corn is hard because as you say it is in many foods. When the inflammation in your GI tract goes down, hopefully these things will improve. Work with your GI and allergist to see what you can do to help with the inflammation.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: Am I on the right track?

Postby georgina » Tue Jul 03, 2018 1:42 am

You weren't properly tested , you should have been tested before the Vanco, not after , you can end up with false negative results up to 2 weeks after the Vanco course. And if your doctor suspected that you are dealing with Cdiff , why did he made you take Cipro witch is a HIGH offender instead of having you tested and (if the test was positive) go directly with Vanco. Maybe getting a second opinion from another GI wouldn't hurt!

prblmacd
Brand New Poster
Posts: 2
Joined: Mon Jul 02, 2018 8:37 pm

Re: Am I on the right track?

Postby prblmacd » Tue Jul 03, 2018 11:27 pm

Thank you for the replies.

I've still got a lot of reading and filtering to do. But I'm glad I found this site to help make sense of it.


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