My sons's ordeal with C dif

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almadh
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My sons's ordeal with C dif

Postby almadh » Sat Oct 21, 2017 11:06 am

After taking antibiotics for Acne, Sinus surgery and Strep Throat my son got diarrhea with some episodes of constipation. I took him to 3 GI doctors in North Carolina and they diagnosed him with Chron's disease.( Really first thing I told them is that he was on antibiotics) They gave him a bunch of medicine that did nothing. Finally I was able to take him to the Mayo Clinic in Rochester and they tested for C diff. the result was positive . For 7 months he went untreated and we were so happy to have at least an accurate diagnosed and a cure...well that's what we thought, we have no idea what we were dealing with. He took Flagyl, probiotics, Keefer yogurt and for 2 weeks he was doing better, but then the diarrhea came back. He had to withdraw college due to his debilitating condition. On October 12 he finished Vanco , but he has a terrible pain in his stomach upper left side that irradiates to his back as well as motility issues. Doing some research I found out that Vanco may cause pancreatitis which match my son symptoms. I'm taking him to the emergency room to check his pancreas and give him iv fluids. I read that probiotics may be very dangerous to people with pancreatitis which fortunately I removed last week. Next week he has an other test for C diff....I hope is gone other wise I will demand a Fecal Transplant at Mayo.
No more Vanco!!!
Meanwhile, I'm a believer of alternative medicine as support. I read on the Peggy Foundation this article, " Holistic Treatment of Clostridium Difficile gut infection, Case Study" . I contacted Dr Hilty http://www.transformationalhealthcare.net/ and she prescribed Allicidin, Biocidin and other supplement to destroy the C diff bio-film. Also Dr Michelle Moore follows a similar protocol : c-difficile-treatment.com. I'm sure the supplements will help. I'm also taking him to an acupuncturist to help him with his motility issues and pain...at this point we are trying everything!
I'm so thankful for this group. It has help me a lot to understand this terrible disease and gives me hope that my son will recover.

beth22
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Re: My sons's ordeal with C dif

Postby beth22 » Sat Oct 21, 2017 12:28 pm

Welcome to the site and please read the first forum with information for new posters. I'm so sorry for your son's ordeal and for being misdiagnosed. I, too, got pancreatitis from c difficile. I continue to take small doses of probiotics, however. I would first make sure that it is pancreatitis because colon spasms can also give pain in that area.

I don't really know much about the supplements that you mention. I tried some, but nothing worked for me except FMT and that only worked until I took antibiotics again, so be aware that in the future your son should be very careful about antibiotic use and only take them if absolutely necessary.

I am sure others will come along to give you their thoughts. Good luck to him and hopefully he will be back at school soon.

roy
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Re: My sons's ordeal with C dif

Postby roy » Sat Oct 21, 2017 12:41 pm

Guidlines say that a test to see if its gone is not a good idea, there's a high chance the test result would be a false positive.
A bad Dr might want to treat just because of that test result.
Only symptoms indicate if it's gone.

Machaon
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Re: My sons's ordeal with C dif

Postby Machaon » Sat Oct 21, 2017 2:46 pm

Your son went seven months without treatment. During that time, the Clostridium Difficile infection could have done quite a bit of damage to your son's intestines. The large intestine runs up the left side of the body and crosses over, below the stomach, to the right side of the body. Could there be a possibility that the pain in your son's upper left side could be due to the infection?

Your son got better taking flagyl. You don't say if your son got better while taking vancomycin. I would assume that it did help, but your son got worse (relapsed) after he stopped taking it. Now that he has used the two inferior antibiotics, perhaps it is time for the most effective antibiotic against Clostridium Difficile.

Have you considered trying the antibiotic dificid? Dificid works by killing Clostridium Difficile in the gut, suppressing the production of certain Clostridium Difficile toxins, and inhibiting the production of spores, while preserving the normal gut microbiome. Great stuff! But... it is very important to build up the good gut bacteria while taking the dificid and after, IMHO.

Misdiagnoses is very common throughout our medical system. I just worry that your son has to wait another week without treatment.
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

NanciT
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Re: My sons's ordeal with C dif

Postby NanciT » Sun Oct 22, 2017 11:22 am

I want to add please be cautious with "Michelle Moore's" books and advice. Her books( not only CDIFF but MRSA and more!) do not appear from personal experience or based on any real studies. Her name has been brought up several times on this site.

NanciT

Bryan30
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Re: My sons's ordeal with C dif

Postby Bryan30 » Mon Oct 23, 2017 8:53 am

These folks are right. My chief complaints have always been upper left abdominal pain, which radiates to upper left back. I have had every blood test and every scan you can imagine. My adventure started with Giardia, which I was treated with flagyl. I then tested negative for the parasite. Dr's told me my symptoms were due to pi-ibs... a year went by... I begged for help and finally they tested me and it was found that I had c-diff from antibiotic treatment. I relapsed twice on vanco. I was finally given Dificid. I test negative now but still have the upper left pain, mild nausea, spasms, and reflux. The longer you have c diff the more it messes you up. It's the gift that keeps on giving.

almadh
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Re: My sons's ordeal with C dif

Postby almadh » Tue Oct 24, 2017 12:24 am

Thank you very much to all for your replies.
My son finished Vanco 12 days ago and he still feeling really bad :( constant pain on the upper left that radiates to the back. No diarrhea for the past 4 days, but stools not well formed. His GI doctor couldn’t see him today. So we will have to wait until Thursday for the pancreatitis test. On July they did Endoscopy, CT Scan, endoscopy, blood tests, everything came normal with exception of the C diff.
However , he hasn’t been tested for pancreatitis. I’m so frustrated with these doctors ,why in the world they prescribed him Vanco instead of Dificid? Looks like Dificid is a safer and more effective medicine. I’m so desperate :(

beth22
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Re: My sons's ordeal with C dif

Postby beth22 » Tue Oct 24, 2017 1:20 am

When I have the pancreatitis, my lipase is always elevated and sometimes the amylase as well. Make sure they test him for these as well as any others the doctor thinks are necessary.

Bryan30
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Re: My sons's ordeal with C dif

Postby Bryan30 » Tue Oct 24, 2017 6:08 am

Dificid is a very expensive drug. It's always a battle with insurance tryingbto get it. Generally, flagyl is the first line (which has terrible side effects, and lowest cure rate) because it's cheap. If you relapse on flagyl vanco is usually next. It was only after two relapses with vanco I fought hard and was given Dificid. Like I said, Dificid hit me negative results but I feel terrible. I've been negative since beginning of August. The left upper pain sucks for me. Along with it, I have pretty much constant mild grade nausea, low appetite, bloating, trapped gas (like I always need to burp), anytime I do burp I seem to regurgitate anything I've eaten. Like I said, I've had all tests. All negative. Multiple cat scans, MRI's, Barium, endoscopy, colonoscopy, endoscopic ultrasound, mrcp of pancreas, all bloods including all pancreatic enzymes countless times.... only ever positive on Giardia, and CDiff... it will wreck you. My stool is still just loosecmost of the time, but not diarrhea.

almadh
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Re: My sons's ordeal with C dif

Postby almadh » Tue Oct 24, 2017 10:02 am

Thanks Beth, yes I will make sure that they test his enzymes. Bryan 30, I was reading that if the MRCP for pancreas was normal then a EUS should be performed specially knowing that C diff and Vanco may give pancreatitis. I forgot to mention that my son has lost 35 pounds and can not put weight on and he starting to loose some hair. I'm So sad for him and for all whom are dealing with this horrible disease :( But knowing that many have healed gives me a lot of hope.

NanciT
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Re: My sons's ordeal with C dif

Postby NanciT » Tue Oct 24, 2017 10:08 am

GI's typically will give Vanco and then also a Vanco Pulse/Taper. It can be a real push to get Difcid due to cost. It can be a harsh drug to take, I did not eel well during my taper on it but it did rid me of CDIFF.
You want to make sure nothing is else is going on with his symptoms, if he has no diarrhea he could be dealing with Post IBS. Talk with his GI about this. Is it still a question if he has Crohns? That can complicate recovery.
Often people can get in a terrible cycle of treatment and there is a question if they sill have CDIFF. With formed stools they usually do not test.
I do hope things improve for your son and he starts feeling better
NanciT

Bryan30
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Re: My sons's ordeal with C dif

Postby Bryan30 » Tue Oct 24, 2017 2:06 pm

I'm sorry he's dealing with this. It's been horrible, but at the same time try to be positive. I was not aware EUS should be done after mrcp. Luckily, that was how mine went. Endoscopic ultrasound is pretty much the golden test to look inside your abdominal area. C-Diff is nasty and will leave some with food intolerance and PI-IBS. I am one of those. Btw, I'm a 33 year old athletic male. I had zero issues and an iron gut before this started. It truly is a nasty bug and will mess you up.

denizz
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Re: My sons's ordeal with C dif

Postby denizz » Wed Oct 25, 2017 12:39 am

hi almadh so sorry that ur son has to go throuh all those things at such a young age ..How did they diagnose him chrons ? bcs there are special tests for chrons and if they are positive they say u have chrons and did they give him immune supressive medicines for treating chrons ? hair loss might be related with that ..dealing with cdiff without treatmemt for 7 months is terrible ..so is ur son clear of chrons diagnosis or he has both chrons and cdiff ..

beth22
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Re: My sons's ordeal with C dif

Postby beth22 » Wed Oct 25, 2017 1:31 am

Some people have reported hair loss with c difficile, attributing it to the vanco, but any severe illness can make hair fall out. Have his vitamin levels been checked? Many of us were deficient in iron, B12, B6, vitamin D, vitamin A, etc. For me it was D and A and a bit low on B12.

I had a EUS too and nothing was found, thankfully. BUt, I still have chronic pancreatitis and they don't know why. Since it started after c diff, I assume that it was that. H pylori can cause pancreatitis, so why not c diff? For me, there is no other explanation as everything has been ruled out. And when I would be on vanco, the enzymes would normalize.

almadh
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Re: My sons's ordeal with C dif

Postby almadh » Thu Oct 26, 2017 2:25 pm

Just came back form the GI He is clueless!!!. My son lost 8 more pounds. The Dr. wants to do a colonoscopy. My son doens't have any more diarrhea. His main complain is the pain on his left side. The doctor prescribed him. Desipramine for IBS which is an antidepressant ???
They tested for pelvic floor dysfunction it came back positive but thanks good that can be treated with physical therapy.
Waiting for results of pancreatic enzyme labs.
Thank you guys for all your comments


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