Terrified and Ready to throw in the towel!!!

If you have had or are considering an FMT please share your experiences here.
CDnotME
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Terrified and Ready to throw in the towel!!!

Postby CDnotME » Mon Sep 24, 2018 10:19 pm

I have had CDiff since September 2015. It went undiagnosed for the first 9 months I had it. They treated me for UC instead because they didn’t do a stool culture and my colonoscopy was undefinitive. Well i have relapsed from Vanc and Dificid and flagyl. Never had IV abx. I’m a new grad nurse, newly wed, I’m 24 with what I hope is a long life to live. I had my first FMT on July 19th this year. Tonight i started having watery diarrhea. Frothy like. All the signs of a relapse along with it. If this FMT fails; I’m just ready to give up. I honestly feel like my husband would live a better/happier life with someone else. I feel like I’m NEVER going to get past this. I’m afraid i will lose my job with how much I’ve been absent in the last year with cdiff. When i have symptoms or test positive i cant work for three days after my symptoms finally clear up. I just feel so hopeless. I don’t know if i will ever be happy again, hoping to get over this thing but I just can’t seem to shake it even though I’m otherwise perfectly healthy. I’m just so so extremely terrified.

(I’m taking in a stool sample AS SOON as the lab opens in the morning).

Lisa33
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Re: Terrified and Ready to throw in the towel!!!

Postby Lisa33 » Tue Sep 25, 2018 10:40 am

I am so sorry you have been dealing with c-diff for so long. I know you must be so frustrated and feeling helpless at this point, but you can never lose the hope that you will feel better and c-diff will be in the past. You are young and will get through this. There have been several posters on this site who have had a very hard time getting rid of c-diff. One poster comes to mind that failed numerous round of meds/tapers and an FMT. What finally worked was a bottoms up and top down FMT. It was a long road in recovery to get to some sort of normalcy, but it did work. I have never heard of anyone your age not eventually being cured. I know you said that you have been through meds before, but did you try a Dificid taper with Enteragam. Many posters on this site have had luck with that. Probiotics such as sacchromyces boulardii (Florastor) seem to have benefits in helping to get to a cure as well. You CANNOT give up hope. Also, it is highly possible that you are not relapsing. It could be just a bug. Hang in there.

roy
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Re: Terrified and Ready to throw in the towel!!!

Postby roy » Tue Sep 25, 2018 11:05 am

When you say you relapsed do you mean you had watery D several times a day or do you mean you tested positive?

CDnotME
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Re: Terrified and Ready to throw in the towel!!!

Postby CDnotME » Tue Sep 25, 2018 12:00 pm

Thanks Lisa! I didn’t do a dificid taper but i did use enter enteragam and I pop florastor and another 50 Billion CFU probiotic like candy! I’ve done a long vanc taper three times. Im hoping this isn’t a relapse. I’m just so extremely tired of living in fear and then testing positive.

Roy, I have tested positive each time I’ve considered it a relapse and each time I’ve tested positive I’ve had all of the same horrible symptoms. That’s been 6 times in 3 years.

Princepg
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Re: Terrified and Ready to throw in the towel!!!

Postby Princepg » Tue Sep 25, 2018 12:24 pm

Im sorry that u r going through this .. i just want u to know that this wont go on forever u will eventually beat it and i personally think u did and this is just a scare. Never lose hope and i totally understand what ur going through this sickness is about to destroy my family thats y i cant wait to get rid of it.. anyway stop stressing and dont think about anything negative anymore. Everyone is here for u.

roy
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Re: Terrified and Ready to throw in the towel!!!

Postby roy » Tue Sep 25, 2018 3:16 pm

By symptoms do you mean watery D several times a day that lasts for over 3 days?

CDnotME
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Re: Terrified and Ready to throw in the towel!!!

Postby CDnotME » Tue Sep 25, 2018 3:54 pm

I’m the past yes. However i haven’t had any diarrhea since last night (i had 3 bouts). Last night it was watery/frothy with mucous. But so far today...nothing. I hope it stays that way. Idk if I can mentally or physically handle another true relapse. Could i still be relapsing if I’ve been okay so far today? I’ve only eaten soup and crackers.

roy
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Re: Terrified and Ready to throw in the towel!!!

Postby roy » Tue Sep 25, 2018 3:59 pm

When you relapsed in the past did you have frequent watery D as the main indication of the relapse that lasted 3 days or more?

CDnotME
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Re: Terrified and Ready to throw in the towel!!!

Postby CDnotME » Tue Sep 25, 2018 4:07 pm

Yes. Way more than 3 most times. With blood and rectal inflammation.

NanciT
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Re: Terrified and Ready to throw in the towel!!!

Postby NanciT » Tue Sep 25, 2018 7:04 pm

So sorry you are going through this, that is a long time to relapse so often, I would have advised changing GI's after the second Vanco taper.

We often ask about watery D because people often have various GI symptoms POST Cdiff. It sounds like the D has slowed down, hopefully it is gone but know it can take a long time for recovery. Unfortunately many physicians and nurses don't know how difficult this can be to deal with and recover from. It may take time to get things back to "normal" sick with a bland diet and add new foods slowly. If things start up again and you have symptoms that become severe, see an ID.
If you have missed work they should understand but once again , most think recovery is a quick thing,

Give yourself time, at work make sure to use ALL PPE's etc. Hand washing is a must.

Hang in there, let us know how you do

NanciT

CDnotME
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Re: Terrified and Ready to throw in the towel!!!

Postby CDnotME » Tue Sep 25, 2018 7:49 pm

I have been to two GI’s the second one is the one who found the CDiff and I’ve been to an ID also. :/ both at my regions best healthcare provider. It’s been very very frustrating. I know i have heard ALOT of people having CDiff symptoms but test negative while in recovery. My GI told me that I could have severe post infectious IBS especially since I’ve had CDIFF so long. My anxiety just goes THROUGH THE ROOF anytime i have a bad BM.

beth22
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Re: Terrified and Ready to throw in the towel!!!

Postby beth22 » Tue Sep 25, 2018 9:40 pm

I am one of the people that had to have more than one FMT. You will get well. You may not even have c difficile. There are other bugs going around or you could have an entirely different bacteria. I had campylobacter after c difficile and the symptoms were pretty much identical. If you test, test for other bacteria too. You could have picked up something at the hospital.

NanciT
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Re: Terrified and Ready to throw in the towel!!!

Postby NanciT » Tue Sep 25, 2018 9:42 pm

I also had it for a long time, nearly a year of treatment and a Dificid taper is what finally got rid of it. Recovery has been long, I was on a very long Difcid taper which I feel caused the recovery to be so long and also possibly had a very difficult strain due to years in Healthcare.
There were several times I thought it had returned but it has not and I have made sure to take all precautions and also avoid antibiotics. Be extra careful at work, it can be so difficult. If the GI believes you have Post IBS, there are medications that can help. I was on Levsin which really helped and I also continue with VSL#3 once a day

NanciT

CDnotME
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Re: Terrified and Ready to throw in the towel!!!

Postby CDnotME » Tue Sep 25, 2018 9:48 pm

I am very careful. I actually left the hospital and now work in a wound care center (outpatient doctors office) in the hopes of avoiding CDiff. However i am thinking of going back to ICU. I am the most precautious person EVER. I wash my hands constantly and use PPE if I’m suspicious or if a patient has a history of CDiff. I know everyone says I WILL get over CDiff. It’s just when i start to see the light at the end of the tunnel I have a setback that makes my anxiety 1000x worse. I really think I need anxiety meds. :/


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