My mind is a prison

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okaylo
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My mind is a prison

Postby okaylo » Sat Jul 18, 2020 1:18 pm

I had cdiff in 2014 after taking repeated rounds of Cipro.
One round of Flagyl got rid of it.

A year later, after being on antibiotics for SIBO, I went around my uncle who had recently been in the hospital and recovered from cdiff. Everyone swore to me that he was okay and there was nothing to worry about. My mom forced me to the thanksgiving gathering against my better judgement. 2 weeks later I tested positive for cdiff.

I then struggled with cdiff for close to a year being on repeated rounds of antibiotics and undergoing TWO fecal transplants. In October 2016, I had the second FMT and it finally took.

For the last 3+ years, I have suffered with PTSD from cdiff, severe anxiety and mental health problems. I see a therapist and had to work very very hard to get past the OCD behaviors I once had. It has gotten better and the obsessive bleaching and cleaning has stopped but the fear lives in the back of my mind.

I had avoided my uncle for over 3 years and missed out on holidays and family events out of fear of getting cdiff again if he was possibly a colonized carrier and also the PTSD that is triggered every time I’m around him.

My uncle has prostate cancer and recently I agreed to see him as I don’t want to regret it when he’s gone. The first two times I really kept my distance and washed my hands a lot. This last time a little over a week ago we all had dinner together, played cards, shared photos on my phone and I even sat next to him.

The next day I woke up and was in such a panic mode and crying hysterically as all the fears were back. It’s been a week and I’m terrified that I have cdiff again. I went out and bought a new phone because he touched my old one. So again, mental health is still an issue. I haven’t been feeling too good and feel nauseous, fatigued, and my stomach is in a nervous knot.

I’m on tramadol for interstitial cystitis so I never have loose stools anymore. The watery stools 3x a day rule won’t apply to me. The last time I had cdiff I didn’t have loose stools either.

My uncle didn’t have spores on his hands. I didn’t get spores from eating dinner or sitting at the table playing cards almost 4 years since he had cdiff. But my mind is torturing me as I don’t feel good and don’t know why. He didn’t even use the bathroom the entire time he was there and when he left he used one at my parents house that I never use. I do have IBS and unresolved SIBO despite many treatments but the timing of everything has me worried.

I don’t need to be asked about seeing a psychiatrist or being on medication I just need to feel safe and be told everything is going to be okay. I’m sure a moderator will be along soon to tell me how ludicrous I’m being.

I know this post is long and most probably won’t read it but I just needed to vent because being in your own head when no one else around you understands is just like being in a prison. I’m speaking to my therapist on Monday. I’m trying to put this out of my mind but the fear is taking over. Cdiff destroyed me mentally, physically, and emotionally and I cannot fathom it again.
Last edited by okaylo on Sun Jul 19, 2020 12:51 am, edited 1 time in total.

beth22
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Re: My mind is a prison

Postby beth22 » Sat Jul 18, 2020 1:34 pm

I don't think that you would catch c diff from your uncle. He doesn't even have it now. I am colonized and my husband has never gotten it nor anyone else that I have been around.

okaylo
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Joined: Thu Jun 16, 2016 6:32 pm

Re: My mind is a prison

Postby okaylo » Sat Jul 18, 2020 2:19 pm

So even if he was colonized it’s not like an active infection that’s highly contagious? Thanks Beth.

Ali-Mar
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Re: My mind is a prison

Postby Ali-Mar » Sat Jul 18, 2020 11:00 pm

I have been fighting C Diff for last 5 month and 15 days now, I relapsed 3 times so far and had my 1st FMT 3 days ago. I know exactly what you mean, I am constantly worry, that I never can get rid of it. I had my last Difcid pill 30 hours before my FMT and I am worried that I might have messed up the FMT having the antibiotic so close to procedure...

There is an article on this site, was posted recently about 3 or 4 weeks ago, that states the odds of catching C-Diff from a family mere is 0.48% , almost zero.. it is very unlikely to catch from your uncle, it is fecal via month route, which is very difficult for it to happen
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

okaylo
Regular Contributor
Posts: 147
Joined: Thu Jun 16, 2016 6:32 pm

Re: My mind is a prison

Postby okaylo » Sun Jul 19, 2020 1:02 am

Ali-Mar,

I am so sorry to hear about your ongoing struggle with cdiff. The best thing I can say is that I know what you’re going through and I am sending all the good thoughts and vibes your way.

I never thought I was going to make it past cdiff. It felt like I would live with it forever and was a very isolating feeling.

I don’t think you messed up your FMT. From what I remember, I took my last dose 24-48 hours before the FMT. They infuse TONS of live bacteria into your colon and coat the walls of it. The success rate of an FMT is very high. I just had a very stubborn case and I will be praying for you and the utmost success of your procedure.
Thank you for the info on the article. That’s very helpful. Best wishes to you. Hang in there! Better days ahead.

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: My mind is a prison

Postby beth22 » Sun Jul 19, 2020 1:16 am

The laxative prep that you did would have gotten rid of any medication that was still in your intestines anyway.

poppy86
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Re: My mind is a prison

Postby poppy86 » Sun Jul 19, 2020 7:50 pm

Hi Okaylo, I can relate to a lot of what you described. While my cdiff journey has been different, I still feel like it hijacked my life. It's all I can think about most of the time, for the past 4 months now. It consumes me. I'm doing my best to keep myself distracted, but it can be very difficult at times. I think cdiff can make even the most rational person feel like they are losing their mind. Take care of yourself and stay strong.

NanciT
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Re: My mind is a prison

Postby NanciT » Sun Jul 19, 2020 8:51 pm

Hi there!

It's been a long time.....good to hear from you although I am sorry to hear about the struggle. I know we have talked about the fear in the past...it seems so many of us carry that. I always hope time is what can get us past it.

I am sorry about your Uncle but agree the chances are very very low. You may not remember but I work/teach in a hospital. I still continued to check the boards each day to see if there were CDIFF patients. I also did not allow my students in those rooms and I have been extra careful while there. We are not there now due to Covid....

I wish I had more wisdom for you....it's tough to overcome every aspect of this illness

Take Care

NanciT


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