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Ulcerative Colitis
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limey
Regular Member
Joined : Sep 2016
Posts : 194
Posted 11/23/2019 1:31 PM (GMT 0)
Don't be afraid of FMT I was on it at my research hospital after 4 bouts of C_diff.
It was a life saver for me and have been clear for the past 2 years.
I recently was in Hospital for a Knee replacement and have not been bothered by catching anything.
I would go back on FMT in a flash if I had to.
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2813
Posted 11/23/2019 1:51 PM (GMT 0)
So sorry to hear this, Jen. I know you are scared, but try to keep thinking that FMT is going to be your miracle treatment and you are going to have your life back very soon. Make that be your mantra .. think it, say it, BELIEVE it, get excited about
what comes after.
You may hate the preps but you know you can get through them because you have before ... try not to worry (easier said then done I know). Hang in there and just take things one step at a time,
Wishing you all the best!! Let us know how you are doing.
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/23/2019 4:05 PM (GMT 0)
Why aren't you trying the Vanco taper first anymore? You can still request Dificid first. It's a bit odd she isn't having you try that first.
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/23/2019 4:09 PM (GMT 0)
I would personally try dificid first. Hospital stays aren't exactly cheap either. And your doctor should be getting you in for an appointment. I don't care how busy she is at this point.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/23/2019 6:42 PM (GMT 0)
I think she is worried about
how long I have been sick(since August 18th). I have done three rounds of Vanco and both times I got off it I got really sick again after 24 hours as it was never actually killed. I don’t think this is recurrence. I think the Vanco calms it but it is still in me. Because of this I think she believes the only thing that will cure me is the FMT. So now I don’t know. On one hand if I am going to need FMT anyway I would rather go in and get it done. It would likely take 3-4 weeks to get me a scheduled one which is why she wants me to be admitted because then they have to treat me. On the other hand I am not that sick. I have only lost 5 lbs. on Vanco I don’t have D a lot mainly just morning. I am really fatigued and have stomach pain(feels like an alien in my stomach) and def still have the c-diff smell but I could deal with this if I had to. On the other hand I also read some have to have their colon removed and if by letting this go on and on that happens it would be devastating. I gave good insurance so not worried about
the money. Also quitting my job in 5 weeks and would like to do this under this insurance vs my husbands. I wish someone had a crystal ball to tell me what to do.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/23/2019 6:43 PM (GMT 0)
Oh and the taper only works if you are better first then taper off. My issue is I never get better to be able to taper!
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2813
Posted 11/23/2019 7:20 PM (GMT 0)
Hopefully you are completely off the vanco now. I would think that antibiotics would destroy the good bacteria you would get from the FMT making it fail without having a chance to work.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/23/2019 7:52 PM (GMT 0)
CC really??? No I can’t go off Vanco. I get really sick going off it. Does anyone who has done the FMT know if they still were on Vanco? So many unknowns.... I don’t know what to do
swhitty
New Member
Joined : Nov 2019
Posts : 9
Posted 11/23/2019 9:20 PM (GMT 0)
I was still on vanco when I did the FMT. In fact, I just finished my last dose about
a week ago. I was on a taper of the vanco after getting the FMT (125 four times daily for five days, then three times daily for 5 days, then two times daily for 5 days, then once daily for 5 days). It certainly seems counterintuitive to continue to be on an antibiotic after getting a fecal transplant, however it didn't seem to make anything worse, and I have been fine since stopping the vancomycin. The entire time, I have been taking probiotics as well. Not sure if they actually help since it's only three bacteria in the product I use, and the fecal transplant is thousands of bacteria, but it certainly didn't make anything worse.
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/23/2019 9:25 PM (GMT 0)
I see. Well, I think either option -- trying Dificid for 10-14 days or just going for the FMT -- will be fine. Sorry you are in this position! I am sure they will give you a xanax or whatever for the scope again. Are you going to be prepping in the hospital or at home (if you go this route)? I was confused because you said they'd have you give a stool sample at the hospital. I've honestly heard nothing but good things about
FMT for c diff. Maybe you should just trust your doctor on this one and make the decision easier on yourself.
Btw, that's the same thing that happened to me with campylobacter. I'd feel better while on antibiotics and get worse again after getting off of them. My doctor was convinced something in my house was reinfected me (my water, my cat's poop), but it wasn't! Eventually, he gave me a different antibiotic and it cured it.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/23/2019 9:31 PM (GMT 0)
I have to check myself in through the ER, they will do a stool sample to confirm c-diff, and then if they determine to do a FMT I will do prep in the hospital Sunday night and FMT on Monday. If I don’t do it this way I will have to wait for an
opening on the schedule which could take 3-4 weeks. If you are inpatient they take you immediately. I hate this whole system and process. Second guessing if I should do Dificid first......
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/23/2019 9:32 PM (GMT 0)
I just updated my last post. If you're in the hospital, they'll definitely give you an anxiety med. Maybe you can ask if you can do the stool sample at home. Nevermind, I guess they prob wouldnt let you do that. They cant expect you to poop on demand though! Lol!
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/23/2019 9:36 PM (GMT 0)
I don't want to sway your decision. I just heard how anxious and stressed you were over it. Your doctor probably knows best.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/23/2019 9:50 PM (GMT 0)
Thx Sara. I just keep thinking does my doc know something. Like having c-diff for 3 months and 3 failed Vanco means I should just go to FMT. I don’t know. I wish I had a doc I could trust. I see myself stuck in a hospital waiting for days. I don’t know...
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/23/2019 10:02 PM (GMT 0)
Yeah. That is a long time to be sick.
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 11/23/2019 10:07 PM (GMT 0)
I haven't had c diff (knock on wood) but from all the posts I've read on here over the years, I think you should go for it. It seems to be very effective against it. At least with it being hospital administered it sounds safer than doing home made fmt which I've read about
people doing.
I agree it feels stupid to have to go to DR to get admitted. That's what I had to do too when I was first sick, otherwise I'd have had to wait days for a bed and insurance approval.
Good luck and hope you feel better soon!
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2813
Posted 11/23/2019 10:42 PM (GMT 0)
Jen ... I have no idea. Just seemed to make sense, but perhaps vanco is a very targeted antibiotic and won't kill off good bacteria. Swhitty said that they did just fine. Listen to the person who has experience , not me! Ask your doc when you check in to be sure,
I have seen many people on this site who have had great success with FMT. I definitely wouldn't be afraid to do it. You have suffered a long time .. this is likely the quickest way.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/23/2019 11:07 PM (GMT 0)
Thx CC. I think that is why my doc is just skipping right to FMT. Just nervous about
all the what if’s including a couple of different mentions of UC flare. Ugh. That’s all I need... I am 80% sure I am going for it. Unless someone tells me they did multiple rounds of Vanco and had c-diff come back immediately and then tried dificid and it cured it.
CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2813
Posted 11/23/2019 11:13 PM (GMT 0)
I have seen people here do FMT for their UC and it works great for that too!
I don't want to talk you into something, but you said before your doc is a good doc, she's just so busy. Sometimes we just have to trust docs
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/24/2019 3:59 PM (GMT 0)
So what'd you decide?
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/24/2019 4:15 PM (GMT 0)
I am still home(it is only 8:20). I think I have to go.
garyi
Veteran Member
Joined : Jun 2017
Posts : 2244
Posted 11/24/2019 5:40 PM (GMT 0)
I've read that having a family member, someone in known good health, donate the fecal matter, increase the long term FMT success rate. For what it's worth.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/24/2019 8:53 PM (GMT 0)
In the ER, I told them I needed to provide stool sample, I held it in the morning and was able to. The nurses decided it was too formed to need to be tested!! The ER doc comes in and assess me and on his way out says he needs to run a stool sample. ***?? I am so angry about
poop!! How am I suppose to poop now??? Good news is my GI did alert
the GI team so hopefully everything else goes smoothly. I hate feeling helpless and at the mercy of the staff. Get ready for more ranting posts from me.
Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 11/24/2019 10:01 PM (GMT 0)
Wth! God, I hate dealing with incompetent medical staff! Rant away.
*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 11/24/2019 10:19 PM (GMT 0)
My hubby got me black coffee and I was able to poop!! Good news is already met with the admitting doc and they are starting paperwork to get me admitted. Everything looks in order and GI dept is expecting me. Should see GI once admitted to the hospital so I know timeline and hopefully start prep. Feeling optimistic and downloaded full season of the crown to watch on my iPad. Bonus of having c.diff is isolation and required a room to myself. Others in the ER not so lucky. There is always worse. Hubby left to go be with our kids. It will be a long 24 hours+ but hopefully I will finally be cured. Who knows maybe I can still walk the turkey trot. 😊
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