How to move on..

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Lissaucd
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How to move on..

Postby Lissaucd » Mon Jan 31, 2022 11:36 am

Hello everyone,

I want to ask advice on how others have moved on… to go back to living life without constantly worrying about c diff. Whether it’s going to come back, if I washed my hand enough, bleached the toilet after BM, examining every BM, worrying that it is back when I get IBS or D especially during the lady time of month, washing clothes separately, fear of giving it to my family. I’m ready to move on. But I feel like when I let my guards down and if it comes back- I wouldn’t be protecting my family bc I can exposing them without using bleach, separate bathroom, clothes separately. I’m not the same, I’m skinny, my hands look beat up with cuts from washing too much, my hair is thinner… I’m tired of looking in the mirror Ans not seeing me. I want my weight back (which isn’t happening), I want my normal hair back, I don’t want to be a hypochondriac/ germ Person. My husband thinks I need to go back to work since my daughter will be going to start preschool in Aug. I will be able to make my own schedule if I do my own thing (I’m in the legal field) I’m ready to move on!!!!!!!!!!!!

roy
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Re: How to move on..

Postby roy » Mon Jan 31, 2022 12:19 pm

One fact might help you move on.
Half a million US citizens get c. Diff EVERY year!
So in 18 months that's more than the population of Washington DC.
99.99% will never give it another thought and you certainly don't see the whole of Washington worrying about getting the runs!
Get back out there and live for today, tomorrow might not come!

Lissaucd
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Re: How to move on..

Postby Lissaucd » Mon Jan 31, 2022 12:34 pm

Hi Roy, thank you! You are so right. Now, I just got to go out and do it!

NanciT
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Re: How to move on..

Postby NanciT » Mon Jan 31, 2022 2:28 pm

Understand you have been through a battle and made to the other side. There is a peace in that, hold onto that. You may NEVER get Cdiff again.....some never do and never return here. I know it all takes time, but I became very grateful for my health after my year with CDIFF.

I would get it again 5 years later after being in the hospital and given IV antibiotics BUT I knew exactly what to do, I have and ID on board who quickly treated me and I pushed through it. I knew so much more, it did not take over my life.

After what we have all seen in the world the last two years......so many more know that health is everything. On days you feel good........be grateful. It can concur the fear which really becomes a weight dragging you down.

In time your body will get there, weight and all....you will get there

NanciT

beth22
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Re: How to move on..

Postby beth22 » Mon Jan 31, 2022 3:52 pm

I think going back to work is a great idea. I was a teacher and when I worked, I thought much less about my health issues. In the summer, when I was off, I would think about them more and they seemed to bother me more. Now that I am retired and doing few things because of the pandemic, things are way worse again. Keeping busy was key to me and it may be for you, especially working outside your home. It definitely helped me.

Lissaucd
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Re: How to move on..

Postby Lissaucd » Mon Jan 31, 2022 4:34 pm

Thank you for all the kind words of encouragement! I’m going to start the ball rolling for my work. I think it would help me even if part time! Being a stay at home mama is wonderful but gives my mind the opportunity to race. Time for a change. Thank you again!!

D1dad
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Re: How to move on..

Postby D1dad » Mon Jan 31, 2022 6:29 pm

I’ll be saying “it’s been 3 years” in another month or so. I can promise you that the smelling of your own feces will fade in time and so will the constant worrying. I say constant because even after 3 years I still worry about that antibiotic that’ll send me to the crapper for days on end, the sweating, the prayer that a lightning bolt knocks me off the commode or the widow maker that allows the wife and kids to finally be rich via life insurance. I couldn’t ever imagine life without crossing my fingers while letting a silent one go in a grocery store without having to do the puckered cheek shuffle to the restroom, but it happened, and it will for you as well. Day by day with bravery you’ll try new food and hopefully realize your were worried for nothing. Time and being headstrong is the only thing that’s gonna fix getting past this. Keep your mind positive and stay busy. Laying on your backside worrying will only make your tummy rumble.

Lissaucd
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Re: How to move on..

Postby Lissaucd » Mon Jan 31, 2022 8:14 pm

Once again 1dad, you have me laughing! It’s hard for me, bc I didn’t get c diff from taking an antibiotic. They like to call me a “unique” case- according to the specialist. So my mind races, since I didn’t even need an antibiotic to get sick. I just got it. You are right, going back to normal is what I need to do!

Steffi
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Re: How to move on..

Postby Steffi » Tue Feb 01, 2022 12:32 am

The antibiotics are not always the reason for cdiff to progress - failing immune system also can open the door ...

Lissaucd
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Re: How to move on..

Postby Lissaucd » Tue Feb 01, 2022 12:37 am

Guess I should look into strengthening my immune system then!

beth22
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Re: How to move on..

Postby beth22 » Tue Feb 01, 2022 1:50 am

When I had c difficile, my ID checked my immune system with IgA, IgM, etc. to see if my immune system was okay. It was. Next time you see your doctor, you can ask about that and see if it is worth testing your levels. But, getting rest and making sure your vitamin levels are normal is also good.

Lissaucd
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Re: How to move on..

Postby Lissaucd » Tue Feb 01, 2022 5:18 am

Looks like I had the IGA test done already! All normal!

BetsyS
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Re: How to move on..

Postby BetsyS » Tue Feb 01, 2022 10:09 am

I think "moving on" is accepting your new norm. Doesn't mean giving up if you have residual issues you're still working on, rather it's deciding you're not going to let it rule your life.

I am celebrating an anniversary of sorts; two years off of my Vanco taper after severe CDiff and two relapses. I've been left with chronic D and probably a mild recurring case (Roy- my Dr. agrees with the advice you gave me). I no longer obsess over the color and texture of my poo (for which my mother is grateful), nor do I let it curb my activities if it can be helped. I have chosen to view my glass as half full and celebrate the few days I have a " normal" stool rather than focus on the chronic D.

My mother has been an inspiration working through this. She went through 3 bouts of cancer and 5 abdominal surgeries in 10 years, leaving her with a colostomy. At first she thought she'd have to give up traveling, but she's a fighter. We've been on 20+ cruises since the diagnosis of her first cancer at 79. She is now 94 and we have have a cruise booked for next Oct, Covid permitting. She taught me there are others who are worse off; be grateful for what you have and what you can still do.

Lissaucd
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Re: How to move on..

Postby Lissaucd » Tue Feb 01, 2022 2:58 pm

How wonderful Betsy!!! We are a cruising family too! My grandparents loved to cruise- over 75 cruises! My husband and I actually got married on a cruise-ship- the grand princess! You mom is right, people have it worse off. Thank you for sharing- very inspirational!

beth22
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Re: How to move on..

Postby beth22 » Tue Feb 01, 2022 10:48 pm

Lisaaucd - Great that your immune tests were normal, so that is another reason to be grateful and move on. If you haven't checked vitamin levels like B12, B6, D, iron and other minerals (calcium, folic acid) that might be worth doing too. I and other posters have been low on vitamin D and when I started supplementing, my stools got much better consistency. B12 is also important and some posters have been low on that as well as iron.


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