Need to Vent, Could Use Good Vibes

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Kuro
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Joined: Thu Mar 29, 2018 5:12 pm

Need to Vent, Could Use Good Vibes

Postby Kuro » Fri Apr 06, 2018 1:14 am

Hi everyone,

I haven't posted very much, as I've been trying to hold it together throughout this whole unexpected ordeal. Unlike many here, my symptoms haven't been nearly as severe as some (knocking all wood in the house), but I nevertheless ended up here in an effort to learn about what I had and what we needed to do for the safety of myself and my family.

But, I need to vent to people who understand. I'm really sorry if this gets long winded.

We learned about my C. Difficile diagnosis (tested positive for C. Diff Toxin) Thursday of last week, despite no antibiotic exposure, and I started Vancomycin 125mg 4x/day the next day. A lot is in my favor. My diagnosing GI specialist really seems to know his stuff, as basically everything he said lines up with advice one would get here. It took almost two months to meet him, and about a week or so thereafter to hear about the C Diff. Otherwise, I've had mild IBS-like symptoms all my life, and I considered that to be the likely diagnosis just by having watched a mom with actual IBS all my life. I was at peace with that diagnosis, and after finishing my last test - an Upper GI x-ray with small bowel follow through - I thought I would be free and clear after the blood and stool test results came back.

Well, as we all now know, it didn't turn out that way. Let me begin by saying that I'm a physically disabled young man who turned 33 in February, onset of disability at age 17. That turned my life upside down, but it wasn't life threatening and I came to accept life with it in the long term. To be handed another diagnosis which feels like a lifetime ordeal has left myself and the parents I live with feeling anxious (and that word is a vast understatement). There are so many things to consider. What if I relapse a month from now, or a year, or at a time when they can't help me financially like they can now? What if I'm infectious when I need to make my pain management appointment in about 1 1/2 months, and can't get my meds? So on, so forth.

We've kind of gotten into a routine about dealing with the whole thing, partly using info from this site, for which I am grateful. We Clorox my personal bathroom down with spray and the Amazon wipes twice per day, and I bleach down my keyboard (always on the laptop) and anything else I happen to handle in my room once per day. I've been keeping to a very plain diet which basically consists of toast, baked chicken, and either rice or boiled potatoes. Taking probiotics. Lost quite a bit of weight, and I was fortunate that I had the extra to lose. Not sure of what will happen there if it continues or comes back. Anxiety is a monster here, especially health anxiety, and I'm trying to keep it in check. But that brings me to the rant part and where I need good vibes.

In short, my family can't handle this. My mom is a two time heart attack survivor who has anxiety & depression herself, and though she is holding together well, there's no denying her anxiety both for my safety and for not getting herself and dad infected. My dad is the breadwinner (my SSI aside) and is largely exhausted as it is by the time he gets home from work. I have my disability, my health anxiety, dealing with pain management, dealing with psychiatry, and all of these other great things to face. Feeling like I'm a walking hazmat zone with the constant bleaching and hand washing doesn't help my spirits.

Worst of all, I have felt a distinct lack of hope since I got this diagnosis. I'd like to have hope that this first round of Vanco will cure me and I'll never have to think of C. Diff again. Unfortunately, I can't seem to bring myself to allow that kind of positive thinking. Maybe I'm afraid that being positive about my chances - and I admit, 80% or 4 out of 5 would be good odds for any betting man - is just placing myself on a cliff that much higher to fall from if I relapse following the course.

The GI specialist sees C. Diff patients all the time. He says I'm young and in good health, and he feels my chances of recovery are excellent. I can't find it in me to trust him on that one.

I'm counting down the days until that last pill, after which the shield will be gone and the real worry will pick up. It's damned scary. I could use some good vibes, some hope that things can be fine from here on out after the first time around. I'll take anything, really. I'd just rather not relapse at all, and I certainly don't want to go the FMT route (I know it has been a miracle for some, but it's something I'd *very much* prefer to avoid). I need to know that these 14 days could work out and I can just move on with life. That it happens more often than not, even if I can read the odds and should realize that myself. I suppose, after reading some of the worst case scenario stories here, I have soaked them up and taken on the assumption that those will be me.

Sorry for the long vent. I guess I needed it.

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

Re: Need to Vent, Could Use Good Vibes

Postby beth22 » Fri Apr 06, 2018 2:07 am

Since you did not get c difficile from antibiotic use, perhaps the vanco will work for you. If not, there is always Dificid which has worked for many, even after taking vanco. Try to just take it one day at a time and not project too much into the future. I tend to do this myself and it really is of no use, but is hard not to do if you tend to worry, as I do.

We are here to support you, so feel free to vent whenever you need to.

Kuro
Regular User
Posts: 54
Joined: Thu Mar 29, 2018 5:12 pm

Re: Need to Vent, Could Use Good Vibes

Postby Kuro » Fri Apr 06, 2018 2:33 am

I hope you're right, Beth, and that things work out for me. I can't even recall exactly when I last took antibiotics, but I do seem to remember it was Flagyl, which also happens to be among the C. Diff acceptable choices.

I've held it together until the last couple days, when that sense of hopelessness sank in. I just can't shake the sensation that the first round of Vanco isn't going to take. It's an illogical, doom and gloom perspective, but I guess that's part my negativity and part the health anxiety beast. Yesterday, I was pretty despondent. Tried to do better with things today, succeeded until night. I guess all of the repercussions of this came crashing down, even though in theory, one dose of Vanco could leave me not having to think about this ever again.

Thanks for replying to me.

NanciT
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Re: Need to Vent, Could Use Good Vibes

Postby NanciT » Fri Apr 06, 2018 10:00 am

I think having other health issues that you have learned to deal with is very positive here. Pull from the strength you already have to overcome what you have in the past. The other thing that JUMPS out at me is that you have an excellent GI. That can be half the battle with CDIFF and he seems to have the experience we all HOPE for. I have had 4 through this journey.
There is no doubt there is a Brain/Gut relationship and we all FEAR relapse. It is part of the recovery, if we know that and understand it, look at each "good" day as one towards putting all of this behind you. Don't expect to feel 100% once you have finished Vanco, its a day by day thing and slowly add to your diet.
It gets down to time, you will need it to start feeling better. The gut takes time to heal.
Know that you are not alone wit this, every single one of us walks through this the same way with the same fears.
You WILL get there, baby steps
NanciT

beth22
Long Time Contributor
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Need to Vent, Could Use Good Vibes

Postby beth22 » Sat Apr 07, 2018 1:57 am

I don't know if you are on anti-depressants, but some people have done very well on them and it has helped in their recovery. You might talk to your doctor about it. If you are already on one, I would still talk to the doctor if you are very despondent, because as Nanci pointed out with the gut/brain relationship there are things to consider like serotonin levels, etc and perhaps your medication needs to be adjusted.

Bobbie
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Re: Need to Vent, Could Use Good Vibes

Postby Bobbie » Sat Apr 07, 2018 2:50 am

Kuro,

Sorry for your problems. You have enough without c diff too.

The hardest thing about C diff is the waiting, We have all gone through it, and it is a nerve wracking.

Vent whenever you feel like it. No one understands c diff except those who have had it. I am 77 and lived through three bouts of it. There are other treatments now including Dificid and FMTs. I had an FMT five years ago.

With every good wish and hope fora rapid recovery.

Count on our support.

Kuro
Regular User
Posts: 54
Joined: Thu Mar 29, 2018 5:12 pm

Re: Need to Vent, Could Use Good Vibes

Postby Kuro » Sun Apr 08, 2018 2:21 pm

Hi all,

Thanks for your replies.

Now, with my Vanco treatment almost up, I’ve had a buzzing/vibrating sensation from the sacrum down the backs of my legs for about two days. I did have a difficult BM the night before (took three trips over the evening to get it all out). It doesn’t hurt, just the sensation is driving me nuts and interrupting sleep. Can Vanco do this?

I am trying to hold out til Monday so I can gall around to the GI, pain management, whichever of my docs might have insight. The ER is probably the last place one should go when just recouping from C Diff.

Then again, my nervous system may just be plain shot from the extreme panic in the wake of the diagnosis.


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