Feeling hopeless. Need some comfort.

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RomGrl
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Feeling hopeless. Need some comfort.

Postby RomGrl » Wed Feb 01, 2017 7:03 pm

If you've been following my posts then you guys know I've relapsed and I'm on my second 14 day treatment... I'm starting to feel so down.... I know many of us go through these emotions but I can't help but feel like this is a slow death sentence. I've tried to stay off google but everything I read is so negative. And scary.

Like, do we honestly get through this.... sigh. I know you can't diagnose me but I'm losing hope.

amyc
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Re: Feeling hopeless. Need some comfort.

Postby amyc » Wed Feb 01, 2017 7:53 pm

You got to a good GI who put you on vancomycin, right? Lots of people need two courses of meds to kick C diff. I relapsed after flagyl but was cured by a course of vancomycin and now feel great, and I don't have food intolerance issues any more either. Don't let the scary stories get you down!

RomGrl
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Re: Feeling hopeless. Need some comfort.

Postby RomGrl » Wed Feb 01, 2017 7:57 pm

amyc:

Yeah, the GI put me on 250 for 14 days at 4x a day, this will be my second round. He did say the first one was a low dose. And that's probably why it came back....

I just wonder if I will ever live a normal life again.... my stomach hurts today.... and I keep having stupid dreams that scare me and make it seem like I won't make it through this. I'm 26 years old... I'm just so done with feeling this way.

Thank you for writing me. I hope this was an okay place to post....

NanciT
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Re: Feeling hopeless. Need some comfort.

Postby NanciT » Wed Feb 01, 2017 11:14 pm

Romgrl

Sometimes it takes awhile to beat this thing. I do understand the depression that hits with a relapse, I also wondered if I would ever get my life back.
It took time, but here I am to say I beat it. We have the fortunate ones who are treated once and on their way. It really is all over the place on this site. The ONE thing we all have in common is we know our emotional health is related to our gut, when you have CDIFF it really is part of the battle.

That is why I remain here, to share this with anyone going through it and let you know you WILL get better. It may take some time, treat yourself special. When you have stomach pain, get the heating pad out. If you get really down...put a funny movie on and focus on that. If you can get out...go see a good film. I found relaxation music in a quiet setting, feet elevated....heating pad helped me. Sometimes walking helped, I had to push myself due to low energy.

You are not alone in this
NanciT

georgina
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Re: Feeling hopeless. Need some comfort.

Postby georgina » Thu Feb 02, 2017 2:07 am

RomGirl
Unfortunately for some of us it gets difficult to beat Cdiff , and we need more time and lots of treatment but at some point everybody finds the proper treatment to cure it. You are young and otherwise healthy and you will beat this too, have patience , if "God forbid" vanco fails again you have more options like :Dificid and FMT's.
And , there is life even with Cdiff , I am living every day with the "joys" of Cdiff and I am still testing positive for toxins but I'm happy as long as I do not have a full blown infection.

RomGrl
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Re: Feeling hopeless. Need some comfort.

Postby RomGrl » Thu Feb 02, 2017 3:09 pm

georgina:

Thank you for the encouragement... I didn't realize that you still have an active infection? Is that right? Or do you just test positive and all? I've read it's rare for that to happen... Have doctors explained why that may be happening for you? Thank you again for the encouragement... It's been so rough. I shouldn't be feeling so depressed, it's rough.

NanciT:

Thankk you, I really hope that we do end up finding a way to treat it. It's def hard when you feel like it's taking so much from you. I never thought I would be one to have CDIFF. I worked as a CNA for a while and always felt for my patients with it.... It's hard to watch and even harder to go through. I never thought it would be me... I guess with these things, you never really do think it will become you... I just wonder how long this is going to take but I do know I need to perk up and do the things I used to before CDIFF. It's just so hard to even care when you think "what's the point of trying anymore?"

I guess I've been fighting and fighting with so many things in the last year that mentally I"m shot. I even went to a therapist and they weren't much help. They did some EDMR stuff with me and then tried to charge me a crap ton of money. I didn't want to try meds right away but now I"m wondering if they would help me stop worrying.

Every morning is dreadful and I don't want to do half the things I used too... Including write. I just feel like my existence is being cut short by the CIDFF but everyone has said to me "This is no a death sentence, you will get through it."

maxny1
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Re: Feeling hopeless. Need some comfort.

Postby maxny1 » Thu Feb 02, 2017 5:26 pm

Sorry you are going through all this. I think many of us go through a pretty dark place at some point with this, but you're right, it's not a death sentence, for the vast majority. You are young and receiving treatment, so the odds are in your favor. It just takes time, time to heal, physically and mentally.

And the silver lining is once you are healthy again, you appreciate life that much more, every day, having been through the suffering and come out the other side.

When I was really sick, I listened to a lot of podcasts and watched some comedy- SNL, Tig Notaro (who is a CDI survivor!), the Daily Show, etc. That helped. Also focused a lot on nutrition and eating, figuring out what I could tolerate and how to get nutrients and probiotics and keep on weight. And that helped me feel better mentally because it gave me the feeling I was doing something positive to heal.

RomGrl
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Re: Feeling hopeless. Need some comfort.

Postby RomGrl » Thu Feb 02, 2017 6:26 pm

maxny1:

You're right, it really does bring you to a dark place. I just went to a health and nutrition store and got some really good probiotic to take post Vancomycin. The gal there said she's also a pharmacist but believes in natural remedies, which was pretty shocking because most of the people I've met that work as pharmacists have always been pro medicine (at least the people I've talked too). But she explained to me that probiotics without an expiration aren't as great and I asked what all I've been on (Flagyl and Vanco) and then she directed me to a brand she felt always has great feedback. It wasn't even the most expensive one, so, I do feel she was being honest and helpful.

I also bought some Kombhucha, Kefir and some organic tea that is meant to sooth the digestive system. I'm not sitting in the living room, writing and listening to the commentary for the film "Liar Liar." It's one of my favorite things to do before I begin writing a movie.

Back to CDIFF though, I can't agree more, I really am SICK of being SICK. I was just telling my mom how much I appreciate what our body does, even when we aren't aware of it's functions... It truly does so much for us, day in and out, night and day. I'm so thankful to be alive and I have so many things that I want to continue to do for others in the world. That's been my motto from the beginning (hence the positive news website). I just want to make the world a better place, have a family...

My husband and I were talking about having a baby just weeks before the CIDFF started and now I'm terrified because I'll have to go to a hospital and I'm afraid the CDIFF will come back right after I have the baby. It's literally put TERROR in my life and I'm sure all of our lives. I guess I shouldn't let it control every decision I make but gosh... It's so hard.

Ugh.

NanciT
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Re: Feeling hopeless. Need some comfort.

Postby NanciT » Thu Feb 02, 2017 9:57 pm

Romgrl

It is a matter of working through the fear, once you are in recovery and start feeling better, you can rationally think about the fear.
It took me awhile to get through that, and just today while at the hospital( where I work) I saw 2 patients listed with CDIFF. That little fear started taking over again and I had to push that fear aside. It's difficult to do while you are in the battle...once you get through that it becomes easier.

Give yourself the time for treatment and healing
NanciT

georgina
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Re: Feeling hopeless. Need some comfort.

Postby georgina » Fri Feb 03, 2017 4:35 am

It doesn't feel like I have a active infection , I know how it's like to have full blown Cdiff and belive me , I'm nowhere near it. I think I may have a low-grade infection that I hope that my body can overcome in the future by it's own.

RomGrl
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Re: Feeling hopeless. Need some comfort.

Postby RomGrl » Fri Feb 03, 2017 6:40 pm

georgina:

I'm sorry we have all had to go through this, it's not fun... but our bodies are strong. I have faith we will all get through this...
I just hope it's sooner rather than later.


Update (2/7/2017):

I'm finally on day 7 of Vanco but going through D a little this morning. Just twice but I am just worn down mentally. I really hope this gets better... I hope everyone else is doing well today.


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