3 years later

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
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3 years later

Postby Leely » Mon Sep 29, 2014 1:27 am

[I know it’s lengthy but all details are there that might be helpful to some!]

About 3 years ago, around this time of year, I was diagnosed with C.Diff. It all started with a visit to a dental clinic in September 2011. I was there to remove all four of my wisdom teeth. The doctor wasn’t as experienced but in my head, it was a simple dental surgery. He prescribed 300 mg Clindamycin for 10 days. I started taking the antibiotics without asking myself any other question. After about 5 days, I stopped Ibuprofen since the pain in my mouth was bearable but I felt pain at the bottom of my stomach. Googled the medication, read all the horrible side-effects and decided stop the pill. I went to see a pharmacist to ask more about the pain but the pharmacist, all arrogant and ignorant, insisted that I have to continue and my family pushed me too as soon as they heard his answer. I kept taking the pill for the full 10 days. I had a little hard time breathing and started having rashes on my nose, cheeks and above my eyebrows.
Ignored the symptoms and went on without any problem for 11 days after finishing the pills. On the weekend, I felt a little pain on my stomach and I realized that the smell and frequency of my bowel movement changed. It wasn’t loose stool but I was going to bathroom way more often. A week passed. I was out with friends. I started feeling cramps and I was extremely bloated. I went to bathroom many times within two hours but nothing was coming out. I just felt pain.
I decided to drive home before anything get worst. While driving home in highway, I felt sleep once for few seconds. Terrified, I forced myself to stay awake until I get home. I wasn’t hungry, I felt cold sweats on my whole body, and I drank a lot of water and went straight to bed. I woke up few time during the night, went to bathroom and again nothing coming out.

Next day, I felt good. I was full of energy but I went to bathroom about maybe 15 times. Pure clear water was coming out of me in some occasions and in others, anything that I’ve eaten during the day.
I went to Dr. the next day, he wrote me some tests and they all came negative. He prescribed me probiotic. I felt a little better but I wasn’t that great so after a week and half, I went back to the clinic. I insisted to get other tests done. I was given parasite tests (very gross) which came negative and C.Diff again that came positive this time around. This Dr prescribed Flagyl for 10 days. I started taking it the same day and after 4 days, I had extremely sensitive skin (I couldn’t hold a cup or a fork), rashes were all over my cheeks and nose with hive-like bumps, no appetite, and breathing was challenging. Went to another clinic on the weekend and as lucky as I am in life, I felt on another inexperienced money lover doctor. How do I know that? I went back to same clinic for insurance and school papers and when I talked with one of the best doctors there, she rolled her eyes as soon as I named that other ignorant doctor. So what did she prescribed without any examination or discussion about my symptoms? 10 days of 500 mg (2pills x 250 mg) of Vancomycin. The whole thing costs 2000$ CDN but thanks to my insurance, I paid a small portion. Took it for a day, and I don’t lie, nothing was staying in me. No food out there was seating more than half an hour in my body. I either puked or had diarrhea. During those few weeks I lost about 15 pounds.

I decided to go to the best hospital in Montreal as some claimed. After 12 hours wait and my third blood test within 3 weeks, I was told by an amazing doctor that the rest were fooling with me and I had a mild case of Clostridium Difficile. He asked me to stop it all and continue probiotics. He looked at my face and chest and said the reaction that I was having (yes another one with the third antibiotic) is linked to Vancomycin side-effect but he found that I was having way too much reaction and could not understand why.

Breathing problem improved but was still bothering. Infection specialist I saw after a week off antibiotics said it could be Thyroid. Another blood test and I tested negative. Two week after, I went to see an ORL, he looked inside around pharynx area and said my throat is very red but there’s nothing abnormal, prescribed antacids for acid reflux that I didn’t have so I didn’t take it. Throat problem, that feeling of having something stuck in my throat was there for 7 months and it would come and go for 2 years after I took antibiotics. Meanwhile, I got lucky by having my useless family doctor replaced by my current handsome caring family doctor. Thanks to him, I was able to find out in summer 2012 that I was allergic to both Clindamycin and Flagyl by him referring me to an allergist. Same specialist ran food allergy tests and all came negative (I wanted a food sensitivity test however). Check up blood test in August 2012 showed finally that I had hypothyroidism but was not in need of any medication. And by then, my throat problem was a lot less bothering. I also TESTED NEGATIVE for C. Diff at that moment. YEY!

My family doctor also pointed out in October 2012 that I was lactose intolerant and I was better of taking Lactaid with any dairy product that I liked to have. This is what I do to this day. I was also told that I might be going through what’s called PI-IBS with Diarrhea.
Summer 2013, I had a test for Celiac Disease that came negative. I did by myself decided to stop gluten since April 2014 and I can say that, after 6 months, I see a difference: a lot less loose stool. However during period, I still have the IBS-like symptoms that lean to PI-IBS-a

Since then, I’m working on elimination diet and I know most of the food that bothers me (FODMAPs is a great indicator for what is good to take and what should be avoided). I do not take any sugar other then what is natural: honey, sugar found in fruits or vegetables, starch. No alcohol, no coffee, no gum, no fast food, no soft drink can be found in my diet. I have chips time to time. I have 100% organic dark chocolate powder with my soy milk.
On October 2013 (on the same day I got sick 2 years prior to that), I finally got to seat down with a GI. He gave me blood test and results never came in (it got lost). 3 weeks ago, I did all those tests in addition to some other that the specialist added. Blood test totaled 18 tubes. Waiting to see if any comes positive. No call yet.
I still have problem with my belly every now and then. Extreme fatigue some days. Daily joints and muscles pain. Headaches are often present. Some days I feel awfully weak and I can’t stand up for more than 5 minutes. I started stretching which helps with the back pain but I didn’t have the courage to work out like before: I tried few months ago and ended up with a foot injury.

Conclusion: I still don’t know what I have but I feel better and I hope it helps some of you out there that are going through similar symptoms.

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Re: 3 years later

Postby beth22 » Mon Sep 29, 2014 2:11 am

Thanks for sharing your story. Please let us know how you do and how your tests come out. Did they give you a breath test to test for SIBO? It is a type of IBS and a lot of people who had c diff or other intestinal infections get it. Fibromyalgia and joint pains can accompany it. I got it after c diff. It gives food intolerances as well, not allergies, because I was tested too and all was negative, but there are foods I can't eat - dairy products included. Hopefully, the tests will give your doctor a better idea of what you have and how to treat it.

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Re: 3 years later

Postby Bobbie » Fri Oct 03, 2014 3:08 pm

Clindamycin was the first antibiotic implicated with C. diff. Dentists and docs. continue to use it without warning their patients of the possibility of C. diff. Scary! Flagyl causes side effects in many and is becoming less effective in treating C. diff. These two drugs and C. diff. did a "number" on you.

I hope you continue to improve. Thanks for posting your story. Do NOT take antibiotics again unless absolutely necessary. Tell your story to the doctor and stress how ill you were, check with a pharmacist, do research.

Best to you.

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Update on C Diff aftermath

Postby Leely » Wed Jun 06, 2018 6:25 pm

It’s nearly 7 years since I had to deal with one of the nastiest infection ever known and 4 years since my last post.

Since I last stopped Vanco, I have not taken any antibiotics. I had several dental extraction and surgery since 2014 and I always told my surgeons that I will not take antibiotics if they were to prescribe it unless I have an infection. Luckily, they all told me no antibiotics are needed for those procedures.
As one of the comments on previous post enquires, I did not get the SIBO test. My GI said with my symptoms and knowing my case, I do not have it most probably.

As for the 18 tubes blood test: all came negative. They were running test from the basic RedBloodCount (RBC) to my liver and colon condition. My GI confirmed that he agrees with my IBS-D (back then – today IBS-A) diagnosis but to be sure no other illnesses were involved, he gave me few tests. Barium enema, small intestine test and echography for my abdomen. I’ve accepted to do Small intestine test and echography but did not do Barium enema for obvious reasons. (how horrible it is)
The small intestine test consists of drinking chalk-like white drink. Special x-rays are taken of the abdomen every 30 minutes. Mine did not show any abnormality but the radiologist asked me to do the Barium enema to rule out Crohn Disease (fyi. we do not have any history of such disease in our family).
Based on the result and missing test, my GI said that he is 87.5% sure that I do not have Crohn and it is simply IBS.

I have since had my regular annual check-up and everything seemed fine until now. I have had a liver condition for as long as I remember which might need to be treated soon. I have an appointment with my Specialist in less than 4 weeks to get the prognosis confirmed. Since it is unrelated to C.Diff, I will not elaborate.

What I like to list here is what helped me out.

Back in 2015, I started having eye problem. It felt like a layer of foreign fluid was covering my eyes when I was getting tired and rubbing it would not help. I’ve seen a Specialist and he told me that my eyes are not producing much tears. The redness of the eye is apparently also a side-effect of IBS. He prescribed Omega-3 pills and asked me to take it on a daily basis. He said I will see improvement only after 4 months. He was right and I did have better vision and I still do now.

The beauty in all this is that the Omega-3 (krill oil back then, the new one I buy is fish oil) helped my IBS so much. Those with IBS are for sure familiar with their body’s inability to absorb fat and I guess the pill helped me and I was able to regain healthy weight.

My GI suggested Align probiotics but since it contains milk and I’m lactose intolerance, I didn’t show much interest. Instead I started taking liquid form of probiotics named Bio-K+ and the difference is amazing. I enquired my GI and he said it is a very good probiotics but pricy. I believe my colon deserves the 22$ CDN (6 bottles). I drink one every weekend (usually, when I overeat or should I say indulge myself) and both me and my tummy have big smile on.

I do still “follow” FODMAP and suggest it to anybody with consistent bloating or bowel issues. I know my food triggers and plan my time ahead to have a day off if I go out and eat junk food the night before.
My IBS is doing fairly good but since I do cross the line sometimes, I do pay for it.

I had belly problem when consuming alcohol but since my liver condition got worse (mentioned earlier), I stopped drinking about a month ago. To be precise, we are talking about eliminating that one glass of wine or one small bottle of beer. I never drank obsessively and I haven’t touched strong liquor since my c.diff diagnosis.

I have gained more weight…I guess it has to do with the fact that I’m not in my twenties anymore and I also found yummy Gluten Free desserts. Plus, it might be a sign that my colon is healing slowly. I was not able to have anything with fibers (salads, raw vegetables, some fruits) but now, to regulate my bowel movement and eliminate IBS pain, I need to have vegetables every day. That makes me VERY happy. I love both the taste and texture of all kind of vegetables.

What I feel like is not mentioned much and treated properly is psychological burden that C.Diff brings for its survivors and patients.
I had the chance to get my therapy session covered by my work insurance and I have several visits to two different psychologists. It’s sad that these services are not offered for free for those in need…

Some of the topics we covered were
1. How to go back out again and socialize with several food sensitivities
2. How to deal with the anxiety and fear of getting sick in public every time stepping out of the house
3. How to deal with continuous fear of acquiring the C.Diff or any other disease
4. Having a long term vision of life and having some concrete goals instead of viewing everything short term
5. How to cope with OCD ( triggered by C.Diff in my case) through hard times
6. Last but not least, how to date with food sensitivies and other complications ( I still haven’t fully figure this one out lol)

I hope the long essay above help someone out there and to increase positivity on this subject, the C.Diff cases acquired in hospital had been dropping continuously since 2014 that is (11% to be precise between 2014 to 2016 – I got the stat from some Government website) .

Have a happy and healthy life everyone – not matter how hard it gets!

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