Almost 14 months and counting :)

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.
Jill79
Regular Contributor
Posts: 112
Joined: Mon Jul 18, 2016 10:51 am

Almost 14 months and counting :)

Postby Jill79 » Fri Oct 27, 2017 2:47 pm

As some of you may remember I suffered from a mild, but still debilitating, bout of C. Diff last summer. I am a 38 year old female who attributes getting infected to a round of antibiotics (Amoxicillin) possibly in conjunction with my frequent trips to the hospital and various rehab and nursing facilities to visit my grandmother after her stroke. I may not have suffered nearly as bad as a lot of members on here but maybe my story can help someone or at least give them hope.

Unlike most, I only had WD a few times a day for 3 days, however after those three days the consistency was still somewhat soft and not the usual for me. My main symptoms were lower abdominal pain, cramping & burning, nausea, headaches, no appetite, a temperature of 99 (which I know is not considered a fever but very unusual for me) and never ending extreme panic and anxiety not consistent with my normal anxiety and panic disorder and did not respond to my anti-depressants. I also lost over 30 pounds in less than 1 1/2 months. I've suffered from Generalized Anxiety with Panic Attacks and IBS for 19 years but this was completely different.

I was in the ER three times in one week, had an abdominal CT scan with contrast, pelvic ultrasound and blood and urine testing. I even spoke to a crisis counselor because I thought it was just an exacerbation of my anxiety. But except for a benign spot on my liver and a complex ovarian cyst which my gynecologist advised would not cause these symptoms and a visit to my primary doctor I still had no answers just a supply of antispasmodics, anti-nausea and pain medications and a different antidepressant that didn't work.

After three weeks of suffering with no answers I finally I went back to my primary doctor who went over all my symptoms again, noticed my brief period of WD and suggested a stool test. Two days later I got the call that I was positive for C. Diff (toxins A & B). I was relieved to have an answer but scared because I had no clue what C. Diff was. Luckily my internet searches led me here and I'm still forever grateful for all the knowledge and support shared by the moderators and other members on the board. :)

My first round of medication was a 14 day course of Metronidazole. My stomach would literally burn shortly after taking it, even with food and the spoonful of applesauce I took to get it down. I retested 14 days after my last dose and since two days before my appointment I starting having all the same symptoms again, I wasn't surprised when I was still positive. My primary doctor then wanted me to try Xifaxan but after reading many of the topics on this forum and learning that Xifaxan was normally prescribed as a chaser with Flagyl or Vanco, I questioned why he was suggesting that instead of Vanco. I was told it was because it was cheaper and my insurance may not cover Vanco. I called my insurance, they verified that it would be covered and was finally given a 10 day prescription.

For over 6 months I still didn't have much of an appetite but stuck to the B.R.A.T. / B.A.R.T. diet and other bland foods like mashed or baked potatoes with no gravy, grilled chicken, crackers, yogurt, stuffing, english muffins or part of a bagel with a tiny amount of butter and only drank water and diluted iced tea. I still don't drink caffeinated coffee, tea or soda as it causes bad cramping. I made a follow up appointment with my gastroenterologist who treated my IBS and started taking a probiotic (VSL 3) which I still take to this day. I bought gloves, germicidal bleach wipes and washed my hands meticulously. My boyfriend and mother never caught it even when I had the WD and wasn't disinfecting more than normal cleaning. I also bought "Sea Bands" thanks to NanciT and still use them frequently for occasional nausea and dizziness.

I tested negative after the Vanco in early September of last year and even though I was relieved I didn't feel even close to normal. I still had lingering nausea, cramping and pain and ended up looking for a new gastroenterologist because of office staff then another who wouldn't even see me after my initial consult because after a second negative re-test for C. Diff he said there was nothing he could do and instead prescribed me Viberzi for IBS-D when I wasn't having D and he knew I had IBS-C. Finally I saw a third gastro who sent me for an upper endoscopy which indicated inflammation and prescribed a PPI (which I also know can cause or contribute to C. Diff but I was still suffering and missing even more work). I honestly believe the Metro partly caused the gastritis but the infection and two rounds of meds just wrecked total havoc on my GI tract and I also had irregular menstrual cycles for months. Needless to say the generic Prilosec worked. I also wound up with a BV infection from the Flagyl and Vanco which I thought was a UTI but was easily treated with Metrogel.

I finally started feeling almost back to normal around March and April this year, I can eat a lot more of the things I used to and gained all the weight back to show for it! lol :)

The things I learned during my run in with C. Diff: *Not medical advice*

1. It is possible to have an active C. Diff infection without copious amounts / days of WD.
2. If you don't get anywhere with your primary doctor or the hospital seek out a reputable gastroenterologist who will take the time to listen to all of your symptoms and answer any questions and concerns you have (or more than one if you're not happy with the answers or treatment) and request to have your stool tested if you haven't already and don't have a diagnosis.
3. If you relapse after a round of Flagyl request Vancomycin instead of another round of Flagyl or Xifaxin.
4. Keep a detailed log of your symptoms, diet, medications and when you take them and how it affects your bowel movements, but don't worry too much about loose or unusual stools while you're on medications to treat your infection. They will be all over the place.
5. Buy germicidal bleach wipes to wipe down the toilet, sink, and door handles and gloves or you will ruin your hands.
6. Bleach your towels, undies and sheets, pants if soiled, and wipe down surfaces with the germicidal bleach wipes.
7. Always wash your hands after using the bathroom, before eating, preparing food or putting your hands near your mouth. Anti-bacterial gel only will NOT kill C. Diff. Only soap and water will wash it off your hands.
8. Try a probiotic (staggered with Flagyl) and continue it even after you're free of infection. It really helped and continues to help me.
9. Don't drink alcohol while on Flagyl. I felt sicker after even using just lotions with alcohol in them for my severely dry hands.
10. You may have no appetite but you have to eat, especially with the medications. Bland, bland, bland. B.R.A.T. / B.A.R.T diet.
11. Take Flagyl with a spoon of applesauce or yogurt so you don't taste the bitter metallic horse pill.
12. It's completely normal to feel anxious, panicky, worried and scared of relapsing. It's also normal to be overly worried about touching things (I didn't want to pet my cats for months for the fear that maybe they gave it to me or I could give it to them. Completely irrational now that I look back at it as long as I washed my hands before and after.)
13. Don't feel ashamed to tell the people close to you what you have and make sure they understand you can't give it to them from simply shaking their hand, kissing or hugging them. However you don't have to disclose your illness to anyone, especially people you work with, if you don't feel comfortable doing so.
14. You probably won't feel even close to 100% even after testing negative. You can request to be retested for peace of mind but if you're not having WD or loose stool and not experiencing the same severity of symptoms, it could be something else like Post Infectious Irritable Bowel Syndrome or gastritis inflammation.
15. If you can't work, speak to your employer about a short-term disability leave of absence and Family Medical Leave.
16. Try eliminating all caffeine, soda, spicy foods and eat slow to aid digestion.
17. See if your doctor or gastro will prescribe antispasmodics and anti-nausea meds if your cramping and nausea is severe. Try Sea-Bands as a natural way for some relief.
18. Try not to take antibiotics in the future, but if absolutely necessary I have had two rounds of a Z-Pak for severe upper respiratory infections since I tested negative with no relapse. I'm also still on the PPI for the gastritis with no relapse, however everyone is different.
19. This site is an amazing resource and help if you are dealing with C. Diff but always check with your doctor or gastro with any questions or concerns.
20. Breathe. Have hope, you're not alone and this too shall pass even if it takes a while. Seeing a therapist can really help your mental state during and after C. Diff.

Finally I would like to thank everyone who took the time to respond to my worrisome posts and numerous questions. This forum is a godsend!

Thanks for taking the time to read this. I still have bad days but they are getting much more far and in between. You will too!
If you have any questions feel free to message me! :)

Wishing you all the best!

-Jill

NanciT
Long Time Contributor
Posts: 1982
Joined: Thu Sep 18, 2014 12:01 pm

Re: Almost 14 months and counting :)

Postby NanciT » Sat Oct 28, 2017 10:42 am

Jill Great to hear how things have improved! I also still use the "Sea Bands" and I am in my 3rd year post CDIFF but left with IBS and find they do help.
I wanted to mention the PPI. Not sure which one you are on. I was on Aciphex for several years but last year was able to wean off that and switch to an H2 which is Pepcid ac. I did this but ended up needing a endoscopy to confirm, it was a long process. Just thought I would mention that to you.

Wishing you continued health!!

NanciT

Jill79
Regular Contributor
Posts: 112
Joined: Mon Jul 18, 2016 10:51 am

Re: Almost 14 months and counting :)

Postby Jill79 » Sat Oct 28, 2017 2:11 pm

Hi NanciT! So great to hear from you! I was actually put on Pepcid first by my primary before I found the gastro who did the endoscopy. The gastro then switched me to Omeprazole (Prilosec) once a day, but still not feeling great and worried over relapse, he lowered it to every other day. I see him on Nov. 7th so I'll ask if I can switch back because I still feel I have some reflux.

Thank you so so much for recommending the Sea Bands! I have two pairs and still carry one in my purse. They've been a huge help!

Best of health!

Jill

Lisa33
Long Time Contributor
Posts: 2295
Joined: Mon Sep 29, 2014 1:45 pm

Re: Almost 14 months and counting :)

Postby Lisa33 » Mon Oct 30, 2017 10:10 am

Thank you so much for your post, Jill. I wish you continued health!

Alexnew
New User
Posts: 9
Joined: Tue Oct 17, 2017 2:56 am

Re: Almost 14 months and counting :)

Postby Alexnew » Wed Nov 01, 2017 10:49 pm

Hello, I am glad to hear you are doing well.
Believe it or not your story is very similar to mine.
Reading your post has given me a sense of hope.
I also had little to no Watery D. More or less burning pian. I also have had pain near my liver awaiting a MRI to see if there is anything there. I did fagyl, only 250 mg for 10 days, not sure if it helped, to much.
I currently believe I am in a relapse. I have had 1-2 bouts of the D over 3 days. My doctor says I need to have it more times in one day to be in relapse. I almost feel like lying to get put on dificid.
I am just at a lost for words.

I hope for your continuous health and recovery.
Thank you for your time

Jill79
Regular Contributor
Posts: 112
Joined: Mon Jul 18, 2016 10:51 am

Re: Almost 14 months and counting :)

Postby Jill79 » Sun Nov 12, 2017 9:46 am

Hi Alex,

Sorry that I'm only seeing this message now. It's been a busy week. I'm happy my post helped give you some hope.

I'm assuming you tested positive when you were put on the Flagyl? How are you feeling now? If you are still experiencing WD and no change at all in your other symptoms, I would definitely see your doctor. If you still have an active infection ask about Vancomycin or Dificid.

I hope by now you are doing better or on the right course of treatment!

Wishing you all the best!

Bobbie
Administrator
Posts: 11880
Joined: Sat Aug 06, 2005 8:00 pm

Re: Almost 14 months and counting :)

Postby Bobbie » Mon Nov 20, 2017 3:05 am

Congrats. &'thx for the tips "in a nutshell."

Please check out the PPI with your doc. There have been several studies linking the two. I had c diff and acid reflux. I know you know the connection. There are many ways to control acid reflux. See CDI - acid reflux.

Acid reducers have also been linked to c
diff but not as much. I take 150 mg ranitidine, the generic form of Zantac, twice a day and found it more successful than a PPI.

Again, congrats.


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