Hi all im new on here and really need to vent

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
txjoanna
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Hi all im new on here and really need to vent

Postby txjoanna » Wed May 10, 2017 8:26 am

36 f It all started last week of march this year. To make long story short. I was put on vanco for 14 days when I was done D came back ended up in Er and they kept me for 4 days. Dr decided to put me on vanco taper and I felt OK by second week on vanco but as I was going down on dosage my stool became real soft mushy it had form but now just plops out and sits on the bottom of the toilet I know tmi. At this time my anxiety so high I'm constantly worrying. I don't want nothing bad to happen to me because I have people that depend on me:(i have loose and mooshy stools I went like 5 times yesterday. I'm so frustrated I see GI Dr today and go from there. I'm honestly over these strong antibiotics thinking about asking for a fmt. I feel like I'm not beating this thing and starting to feel like this will never end:(

Musings
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Re: Hi all im new on here and really need to vent

Postby Musings » Wed May 10, 2017 3:52 pm

PI-IBS is common after c.diff and its' treatments and while 5 movements is a little high - it's not unheard of in recovery especially if you ate a food/foods that might upset you or have had increased stress/anxiety. The real recovery starts once you are off the medication as your body needs to rebuild its' natural defenses so it is recommended to stick with the BRAT diet for awhile and slowly introduce new foods one at a time. Many experience food intolerances after c.diff with common triggers being dairy, greasy, spicy, fried, and high fiber.

If you can tolerate them, you might want to try probiotics. The pills did not settle too well with me so I drank kefir daily and still do.

If you do end up needing a FMT, they will have you on antibiotics first so right now consider finishing off your taper and seeing if your body can heal from there.

~Lauren

txjoanna
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Re: Hi all im new on here and really need to vent

Postby txjoanna » Wed May 10, 2017 7:08 pm

Thank you Yea I'm gonna see how I do these next few days. I seen my GI Dr they want to do a colonoscopy but that's like 4 weeks out. And they have me taking the vanco 3 times this week and next week m w f .
I guess its a taper pulse I dunno. And I'll be done with meds. I'm just so frustrated because I been going 4 times 5 times 2 times but now 4 times and I'm afraid I may be relapsing. And I gotta wait a month to get a colonoscopy Sooooo what am I supposed to do just keep pooping so much until then smh. And I do have very high anxiety from this to the point I'm having cry spells. I just want to be normal again.

Acres
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Re: Hi all im new on here and really need to vent

Postby Acres » Wed May 10, 2017 10:03 pm

Hi,
Ask your doctor about Dificid.... Vanco did not work for me and my GI did not bother with another round of it....He gave me a 10 day script of Dificid and that worked (He told me it does not kill off any of the good bacteria in the colon)...
During my recovery my stools were all other the place....pencil thin or thinner, flat, pieces etc...Some days I would go 5 times some days just once....
I had pi-ibs which included gut, flank, hip area, lower back pain for many months but I slowly improved....
I ate a bland diet (rice, apple sauce, almond butter, broiled chicken w/o antibiotics, pita chips, zucchini etc...) for many months as well...
But I slowly improved...It took time....
Do you take probiotics ?
I took Florastor and vsl3 last year during my fight and continue to use vsl3 daily...
Not everyone can tolerate them, but they were ok for me...
Why do you feel you need a colonoscopy ?

The anxiety is overwhelming..... I know exactly how you feel and so does everyone else here...I see a therapist and have a very supportive wife...Having someone you can really talk with is (imho) extremely important...
Scott

NanciT
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Re: Hi all im new on here and really need to vent

Postby NanciT » Wed May 10, 2017 11:42 pm

Hello txjoanna and welcome to the site Please read the first forum for all new posters

There is a definite gut/emotion relationship as we see on the forum over and over again...you are not alone. When the gut is sick, its very difficult to deal with the emotions. I also feel one of the most difficult things about CDIFF is if it returns, it can really cause despair. Hang in there, it sounds like you have good DR's, they have you on a pulse/taper and that may take care of it for you.

Hope you feel better soon
NanciT

txjoanna
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Joined: Sat May 06, 2017 6:44 pm

Re: Hi all im new on here and really need to vent

Postby txjoanna » Thu May 11, 2017 1:56 am

Well Dr wants to do a colonoscopy because she wants to make sure nothing else is going on. I thank all that has replied and gave advice I really appreciate it. Yes I'm taking cultrell twice a day. Went to store bought some kefir it taste weird but I'll try anything at this point also a nurse told me to drink these lil probiotic drinks that ate tiny juice bottles where the yogurt is. All I can do is pray and take it day by day and hope it goes away soon. I heard of dificid but how much does that cost? One thing I dread everyday are the mornings. For some reason my anxiety is high at that time because now I fear going to the bathroom I feel like a complete mess constantly worrying. I try not to but its so hard. I really hate this infection it makes you feel gross and not yourself. Its late gonna try sleep again I thank everyone who responded:)

georgina
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Re: Hi all im new on here and really need to vent

Postby georgina » Thu May 11, 2017 9:16 am

Txjoanna
Cdiff is a disgusting , lonely , isolating , depressing disease and everybody can relate to the "bathroom anxiety" , we all been there , most of us couldn't endure the anxiety anymore and seeked help from psychiatrist or therapists , witch i suggest you do the same if you feel overwhelmed.
Dificid is a expensive drug but is very efficient as it is made to target only clostridia , doesn't touch your good flora , if your insurance won't cover it you can look into Merck's assistance program , see CDI - Dificid & Dificid Assistance Program.

Lisa33
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Re: Hi all im new on here and really need to vent

Postby Lisa33 » Thu May 11, 2017 9:38 am

So sorry you are going through this. I just wanted to add that in my experience, 3-5 BM's that are not D, is not unusual in early recovery. I would have terrible mornings in early recovery where I would have to go several times. It was always loose, but not watery D. I thought I was relapsing a couple of times and actually was retested. My GI at the time had said to start the vanco again, but my gut told me to wait on the test results. It seemed that my mornings were terrible, but the rest of the day would be ok. My test results were negative. I was so thankful that I waited, otherwise I would have started another round of vanco unnecessarily. The real healing takes place once you are off meds. A lot of people, like myself, experience PI-IBS. It actually took me 8 months to have only 1-2 BM's per day. I never went back to how I was pre-c diff. I had a new normal when it came to bathroom habits. I had c-diff in Sept 2014, and I still get bouts of IBS at times. I recently had a colonoscopy and endoscopy done to make sure that there wasn't anything else going on. Results were all negative. C-diff just altered my gut for one reason or another, where I get IBS from time to time. I never had any GI issues prior to it. My advice would be to take one day at a time. If you are going frequently but somewhat formed and not watery D, it doesn't mean that it's c-diff, but just early recovery. I would also discuss Dificid with your GI as a next step plan, as Dificid has worked for many after vanco tapers failed. I also recommend probiotics as the others said. Florastor and VSL-3 are both highly recommended ones. I also would get a second opinion on the colonoscopy. My GI also wanted to do a colonoscopy very early on after c-diff. I refused as I was still not out of the woods and trying to get my good gut bacteria in check. From what I understand, a colonoscopy cleanse can upset that balance again. I switched GI's who said unless I had blood or severe pain, it was not necessary at that time. You have to listen to your doctor, but make sure that your concerns are addressed. I am still not convinced that c-diff is still there based on what you are saying, so try not to lose hope that this vanco taper isn't working. If things start to decline and the watery D comes back with revenge, then I would definitely discuss Dificid or a Dificid taper as the next step. And then there is the FMT when all meds have failed. But try to stay positive, that this vanco taper will do the trick.

Lisa

txjoanna
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Joined: Sat May 06, 2017 6:44 pm

Re: Hi all im new on here and really need to vent

Postby txjoanna » Fri May 12, 2017 8:32 am

Thank you gorgina and Lisa. It really helps when people understand you. Everyone telling me to take it day by day and I'm trying my best. Yesterday wasn't so bad had 2 bowl movement I actually was relieved for that moment and tried to relax yesterday. Its a struggle to decide what to put in your gut and as far as fluids I been only drinking water and I guess apparently I'm not taking enough calories in because when I seen my GI the other day I had lost like 6 pounds and she told me to up my protein and try these breakfast drinks that has vitamins and ect. So I got some almond milk and mix my breakfast drink and for that moment I smiled because I was like its nice to have something besides drinking water since this whole ordeal started. My problem is having anxiety and being inpatient dealing with this is overwhelming. I did ask my PCP for something for anxiety she gave me a 30 day supply I'm thankful but at the same time I'm like no refills? And its helping lil bit I guess some these Dr don't want you on these anxiety meds for too long I dunno. I'm really glad I found this site because it seems like you get better info from patients who or have dealt with this with a better understanding than most doctors.

txjoanna
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Joined: Sat May 06, 2017 6:44 pm

Re: Hi all im new on here and really need to vent

Postby txjoanna » Wed May 17, 2017 6:35 pm

So confused don't know why I'm still having stomach pains :(

txjoanna
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Re: Hi all im new on here and really need to vent

Postby txjoanna » Fri May 26, 2017 11:49 pm

Definitely relapse not a happy camper right now

beth22
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Re: Hi all im new on here and really need to vent

Postby beth22 » Sat May 27, 2017 1:34 am

Did your test come back positive?

txjoanna
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Joined: Sat May 06, 2017 6:44 pm

Re: Hi all im new on here and really need to vent

Postby txjoanna » Sat May 27, 2017 8:09 am

Hi beth as I'm here in the hospital room yes I gave them a stool sample. Yes positive! Oh just to make long story short. Had rude Dr tried to tell me I'm OK and was trying to discharge me and I wasn't having it because I knew something was wrong. That Dr is fired! Just curious on what the next step is hopefully they will talk about fmt because I came off a vanco taper and relapse 5 days off of antibiotics. Very frustrated!


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