13 Weeks Post Vanco taper/pulse

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.
sammyp
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13 Weeks Post Vanco taper/pulse

Postby sammyp » Sun Nov 18, 2018 11:04 pm

I’m am a 29-year-old female from Washington. I am a wife to an amazing husband. I also used to be a student pursuing a graduate degree and a fine art photographer, but illness and PTSD have stolen these things from me for the time being.

My Cdiff ordeal began at the end of April 2018 when I contracted shiga-toxin producing E-coli 026 after eating at a local restaurant. I was sick for weeks with many doctors both in clinics and in the ER telling me that Ecoli was a self-limiting infection that would resolve on its own in 7-10 days. 7 days came and went. Then 10 days. Then 14, and before I knew it, I had been sick for 21 days. At this point, I was getting worse, not better. I was now using the bathroom at least 20 times per day. I couldn’t eat or drink anything. I sought the counsel of an infectious disease doctor who decided to administer another stool test to make sure the Ecoli was gone. As it turns out, the stool test showed I still had Ecoli and now tested positive for CDiff as well. My case is a bit unusual. I had not taken any antibiotics in years. My infectious disease doctor’s best guess is that the severe Ecoli infection compromised my good gut flora, allowing CDiff to flourish.

Having two infectious diseases at once turned out to be more than my body could handle. I ended up hospitalized soon after my confirmed positive CDiff test. This came about after my third visit to my local ER for fluids. The doctor on call decided to have me admitted for severe dehydration, weight loss, rapid heart rate, and low blood pressure. At this point, I hadn’t eaten anything in over three weeks and had lost 25 pounds in that time. I was in the hospital for 4 days where I was given round the clock IV hydration and was started on Vancomycin. Finally, during my second day in the hospital, my bowel movements started to diminish, and I was able to tolerate liquids on my own.

I would have never imagined how long of a battle this would end up being. I finished the 14-day Vancomycin treatment that I started in the hospital. Exactly two weeks after my last dose, my CDiff infection reoccurred. I knew it was back when I went to the bathroom over 15 times in the span of four hours. I immediately made an appointment with my infectious diseases doctor and was started on a long Vancomycin taper/pulse treatment. My schedule was two weeks at full dose followed by two weeks of taking two pills per day, then two weeks taking one pill per day, then two weeks taking one pill every other day, and then finally four weeks of taking one pill every three days. This time, I also started taking S.Boulardii pills, once per day and a tablespoon of manuka honey as well which I decided to try based on my own research. I also started eating more miso, fermented pickles, and bone broth which I read could help heal the gut. It wasn’t the popular opinion in some CDiff support groups, but I chose not to radically change my diet. As soon as I was able to move away from bland foods, I let me body eat whatever it could tolerate or craved including sugar. I felt like getting the bacteria from foods I use to eat back into my gut flora was the right thing to do. As of right now, the taper/pulse treatment and supportive care I choose based on my research seem to have worked.

At nearly 13 weeks past my last dose of Vanco, my doc and I have agreed to say I'm in remission. It has been a long journey since that initial Ecoli infection. The longest, darkest six months of my life. During my Vancomycin taper/pulse treatment and even once I was done with it, there were many, many, many times I thought I was relapsing. I would get an instance of diarrhea or a pain that felt similar to my CDiff pain or my heart would beat a little too fast and I would immediately fear the worst often to the point of having a panic attack over the anxiety of it returning. As hard as it was, I adopted the popular 3-day rule which I learned here– 3 days of 3 or more instances of watery diarrhea before testing. Thankfully, waiting always solved the problem and I never went three consecutive days with symptoms and so I didn’t need to seek any further treatment.

Almost 13 weeks into recovery and I still have bad stomach days, especially the week before my period. I still have some food issues that I didn’t have prior to Ecoli and CDiff (my stomach hurts if it eat tomatoes, red meat, raw veggies and fruits) and some days my stomach is just off no matter what I eat. I’m learning to live with this and to rest on the days when my body says rest. I remind myself that I had two very serious infections. My body is not the same body it was before this happened to me. It will take time and patience to heal.

The good days are finally starting to outnumber the bad ones. Mentally is where I'm having the hardest time. I am in therapy and on meds for OCD, PTSD, and anxiety. I had anxiety prior to CDiff but it's certainly been amplified. I’m waiting for the day that I don’t wake up worried that CDiff will come back today. I thought this far into recovery I’d be over this fear but I’m not there yet. I'm also in a legal battle due to the initial food borne Illness that triggered all this which has been taxing but necessary to pay my medical bills. Hopefully this will soon be resolved as well.

I’m sharing this so that those who are suffering can read my story and have hope. I spent hours at a time reading people’s CDiff stories during the worst of my illness trying to understand and to find hope to cling to. I want to be that story for someone else now. Don't lose hope. There were days where I didn’t think I’d make it another second let alone 13 weeks into recovery. I was suicidal through much of this ordeal but today I'm glad I'm still here. I miss traveling, making art, and going to class. I’m looking forward to the day I feel safe enough to do these things again. It’s not today but maybe it’ll be tomorrow. For now, I’m taking it one day at a time and giving myself the space to heal both physically and mentally.

Aurora
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Re: 13 Weeks Post Vanco taper/pulse

Postby Aurora » Tue Dec 04, 2018 12:35 pm

Wow. You have been through so much. Thank you for sharing. May you continue to get stronger and healthier with each passing day. This illness has increased my anxiety as well. I did decide to start seeing a cognitive behavior therapist and it has helped. I am able to talk myself back down when I am getting stressed out about health-related issues. I had an off day and my mind immediately went to the worst. The constant worry that it is back is always what pops up first. This site and the people here are such an important resource to all of us navigating through this journey.

Robbie
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Re: 13 Weeks Post Vanco taper/pulse

Postby Robbie » Wed Dec 05, 2018 9:24 pm

Your story is so heartfelt. Thank you so much for posting it. I'm finishing up 14 days of vanco and trying to decide if I want to do the taper/pulse. My Dr said the best way to treat is long and slow, but I don't want to take more meds than I have to. I'm at the point now where I can feel the anxiety increasing and I don't know what to do. I've read in these posts that a lot of people experience IBS symptoms in recovery. I had IBS before I got c diff, so how will I know if it's a relapse or not? I'm really scared at this point. Do you have IBS now from the c diff and if so what are your symptoms?

sammyp
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Re: 13 Weeks Post Vanco taper/pulse

Postby sammyp » Thu Dec 06, 2018 1:47 am

Hi Robbie. I'm glad I tried the 14 days of Vanco before doing a taper pulse. Im sad I had to go through relapse but I didn't want to overtreat either. One step at a time. A lot of people do well with one course of Vanco. I wasn't one of them but it was worth a try.

Yes, I definitely have post infectious IBS. My symptoms are cramps, gas, bloating, food sensitivities (raw veggies, fruit, tomatos in any form even sauce). I know CDiff isn't back as long as my BMs stay solid and aren't profuse (when I was active I was going 20+ times a day). The anxiety is definitely the worst part. Im still not working or attending class or traveling or even leaving home most days and it's been 4 months since I was active. Most people say time and patience is key. Healing from this thing is journey. There's no quick fix for recovery from this, especially when you consider the mental aspects.

sammyp
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Joined: Thu May 24, 2018 2:08 pm

Re: 13 Weeks Post Vanco taper/pulse

Postby sammyp » Mon Dec 17, 2018 9:37 pm

17 weeks post treatment today with no reoccurance.

I told my husband that last week was the first week I felt like myself in months. I had an appetite, less anxiety, and felt pretty good overall. Even tried some new foods and a new restaurant without issues.

Basically it's taken 4 months to have any semblance of normalcy. I still have the occasional bad day but it's usually once a week as opposed to every other day now.

Wishing you all healing and happiness. If I could give any advice it would be to have patience.

sammyp
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Posts: 90
Joined: Thu May 24, 2018 2:08 pm

Re: 13 Weeks Post Vanco taper/pulse

Postby sammyp » Sun Jan 13, 2019 3:28 pm

I'm at 21 weeks today with no reoccurance. More than 5 months. I had some off days last week which I think was a stomach bug. My anxiety was not nearly as high through this as I expected it to be. Some days life actually feels normal again. I was able to do a photoshoot the other day and I also recently began taking steps to starting my own business. Six months ago I thought I would be dead honestly. But here I am, alive and getting things back on track. My advice continues to be patience. This is a major infection and it takes time to heal. You will have bad days but your good ones are coming. Hang in there ♥️

Mich
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Re: 13 Weeks Post Vanco taper/pulse

Postby Mich » Sun Jan 13, 2019 5:43 pm

What psych Med helped I need one badly now because I am in the same boat

sammyp
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Re: 13 Weeks Post Vanco taper/pulse

Postby sammyp » Mon Jan 14, 2019 3:14 am

Cymbalta was what I was on but everyone is different when it comes to meds. Definitely talk to your doc to see what would be best for you.

nestorb
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Re: 13 Weeks Post Vanco taper/pulse

Postby nestorb » Thu Jan 17, 2019 4:52 pm

Please proceed with extreme caution regarding Cymbalta...the side effects from it tend to not be fully understood by those who are prescribing it...close monitoring is also recommended which did not occur in an example I am familiar with...take care Barry

sammyp
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Re: 13 Weeks Post Vanco taper/pulse

Postby sammyp » Sun Feb 03, 2019 9:33 pm

A full 6 months CDiff free! The anxiety and fear of reoccurance has gone down tremendously (it crops up sometimes but nothing like it was). I still have some issues with traveling, being far from home, etc but I feel it's slowly improving. My BMs are pretty much normal and regular except for some occasional mucus which I attribute to IBS flares. My diet is not completely back to normal but I'm definitely expanding farther this month (I can eat cooked tomatoes again!). I still avoid raw veggies and fruits.

For those reading and looking for hope, there is life after CDiff. I know it feels like you will never have your life back but you will! This month I started my own business and have thrown myself into that. If you had told me six months ago I'd be able to do this, I would never have believed you. Recovery had been rough. Lots of ups and downs and fear and anxiety but I finally feel like I've made it to the other side.


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