2 FMTs still problems

If you have had or are considering an FMT please share your experiences here.
okaylo
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2 FMTs still problems

Postby okaylo » Sun Nov 27, 2016 12:38 pm

I think my previous post regarding this was too long as advised so I'm making it shorter here. I have had 2 FMTs. My donor was my mom who had cdiff 5 years ago but recovered quickly while in the hospital. I specifically asked my doctor who is the Chief of Gastroenterology at the hospital if this was a concern. He said it was not and didn't exclude her from being my donor because she had it years ago and did not have it now. Some fellow posters have said she shouldn't have been my donor which I'm not disagreeing with I just don't know why my doctor would've gone through with the procedures if he felt it was unsafe. Losing my mind and sanity here right now. Need someone to talk to.

amyc
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Re: 2 FMTs still problems

Postby amyc » Sun Nov 27, 2016 1:27 pm

Medicine is art and science, and FMT is new enough that not everything is known about it. That said, I would recommend a different donor if you have to have another FMT, and not use anybody in your family since your mother and uncle have both had Cdiff. I personally wouldn't have used somebody with Cdiff history as my donor, but perhaps he has had success with donors with Cdiff history in the past, and it really isn't the reason yours might have failed, if it did. It's possible your body just rejects your mother's stool for some reason, or you just caught a bug or something.

Just re test and if it's positive go through the process again using open biome.

roy
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Re: 2 FMTs still problems

Postby roy » Sun Nov 27, 2016 1:28 pm

Thanks for the shorter post.
There's no need to post about your previous history.
We all know it by now!

If someone has previously had c.diff there's a possibility they can still carry inactive spores.
Not active and they will test negative.
If someone has had an active c.diff infection I would not want them to be my doner.

ashtontw
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Re: 2 FMTs still problems

Postby ashtontw » Sun Nov 27, 2016 2:21 pm

I agree to try a different donor. I just had my first FMT last Tuesday, and I didn't get to pick my donor. They had a bank, and I saw them bring in two containers of my transplant all mixed and ready to go right before they knocked me out. I did have to sign a FMT consent form.

Are you recovering, or have you relapsed? I'm not sure if I read your other post, I will go look. But like the others have said, I would want to stay as far away from anyone or anything with C DIff as possible in regards to FMT. Does your doctor or hospital have a bank where they can get pre tested and verified stool if you get another FMT?

okaylo
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Re: 2 FMTs still problems

Postby okaylo » Sun Nov 27, 2016 4:53 pm

Great, well it's a little late now since I've already had this done twice and had the same donor. I can't see why my doctor would've okayed it if he didn't feel it was safe but I guess it doesn't matter now. I'm going to call him tomorrow to talk about it. I don't know if it's back for sure or not and I'm really afraid to retest but I don't see any other option at this point. I'm honestly in disbelief that this is my life right now and I feel like it's all just a bad dream. I really thought it would all be over by now. Sometimes I just don't want to keep going. I have a call scheduled with my therapist today to talk since it's clear I need continued professional help to manage. Still angry and upset though.

ashtontw
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Re: 2 FMTs still problems

Postby ashtontw » Sun Nov 27, 2016 5:03 pm

I'm so sorry you're going through it too. :( I'm having symptoms today after my first FMT last week and I can totally relate to how you are feeling mentally. I have been seeing a therapist through all of this, and it does help. She diagnosed me with mild PTSD from C Diff. I ended up starting to take my Klonopin again before bed to help me sleep. But I refused to go on an antidepressant, just my personal feelings. Some people on here take them and it works wonders for them. I have been on them in the past and don't tolerate them well. If you like books/workbooks - there is a great anxiety/self help book called "Mind Over Mood" and it has worked wonders for me in my darkest days with all of this. It helps with cognitive therapy and positive mindset, which is so hard and so important for us. I hope that if you test, it comes back negative and that you are just experiencing a bug or maybe PI-IBS. But do discuss your concerns with your doctor - that is what they are there for. Even if some of them suck. I will be keeping you in my prayers! Feel free to PM me if you ever need to vent or chat more.

beth22
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Re: 2 FMTs still problems

Postby beth22 » Mon Nov 28, 2016 5:44 pm

Okaylo - The best thing to do in my opinion is to have a test done for c difficile. If it is negative, then you know that you are dealing with something else like a bug or PI-IBS. If it is positive, then you will know that is what is causing the symptoms. I would want to know one way or another. Maybe a negative test will ease your mind and that would be worth it in and of itself. Talk to your doctor and see what he tells you. Generally, it is not recommended to use the same donor again where the FMT failed before, at least that is what I have been told, but different doctors have different protocol. Your mother's stool is probably similar to yours and if she had c difficile, then she was not able to fight it off well either. A different donor, that is not related, might be better in this case and have something in the stool that will protect more against c difficile. My mom had c difficile too and I did not use her as a donor. I probably got it from her or the facility where she caught it. See what your doctor says, but I would ask for a test.

okaylo
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Re: 2 FMTs still problems

Postby okaylo » Tue Nov 29, 2016 2:59 pm

Ashton, I PM'd you. I'm back.

Beth, I asked my doctor before having the second FMT if I should use a different donor to increase chances of success and he said it did not make a difference. Now I am contemplating all of this. I am so upset as I feel like I endured those preps and procedures for nothing. I have the lab work to retest and am going to as soon as I can. This is eating me alive. I really don't want to have to do this a third time. I also have a call into my doctor to discuss everything. Just when I think I'm making progress in therapy and on the road to recovery I end up feeling horrible again. I pray that it is not back.

jds0870
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Re: 2 FMTs still problems

Postby jds0870 » Tue Nov 29, 2016 4:03 pm

I had two FMTs a year ago December 16th and 23rd. I can tell you I still have IBS. Sometimes severe. I have tested multiple times from symptoms. Each time negative. I had c diff almost two year when I finally got the FMTs. Your recovery is going to be up and down....sometimes you will feel horrible and positive it's back. I had Mucous and D. I still get Mucous from flares. Now that I've been pregnant my ibs is on overdrive. Please don't give up. Give yourself time to heal. The damage didn't happen overnight it won't go away overnight. I've read a lot of your posts and I'm so sorry I can see you're on the edge and scared. I used to be the same way. Try to do something to take your mind off of the healing. I'm sure my ibs is a lifelong thing now which sucks I get it I do. I had a great stomach before. Now it's bad. I get the fear. I was 28 when it started I'm almost 32. I have two daughters and a baby on the way. Don't let c diff take every joy out of your life. I promise you will be happy again. Praying for you for peace of mind and comfort. You will get there. I have been on this board for a while now and read success stories from those who thought they'd never heal. But they did! You will too

okaylo
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Re: 2 FMTs still problems

Postby okaylo » Tue Nov 29, 2016 4:30 pm

Jds0870, thank you for your concern and for all of the nice things you said. Did you have FMT's in the hospital or did you do them at home? What concerns me is that the symptoms have gotten worse within the last week or so and I have a really bad feeling about all of this. The pain has multiplied and the burning is near unbearable along with the cramping that comes in waves. I either have loose stools, D, or a day in between where I don't go at all (probably because I am not eating a lot and there's nothing left in my stomach). I feel like I am not properly digesting food and that the food is racing through me. It does not matter what I eat.
I'm questioning my FMT's, if I should've used my Mom in the first place, if I should've used someone different the 2nd time around (even though my doctor told both my Dad and I at my consult appt. that it didn't make a difference), and so on. I'm beating myself up over this and getting really resentful. I can't go on like this every day being nearly 2 hours late for work and feeling so ill I just want to curl up in a ball. I have days where I cannot even stand up in the shower and feel like I'm dying and about to black out. That paired with the anxiety of it all is enough to send anyone into orbit. I've tried to be patient and give this time, it's been almost 2 months since the last FMT but I feel progressively worse every day. A negative test would really ease my mind but I have a feeling that's not going to be the case. Usually when I've trusted my gut and tested it's back. I'm waiting on a call from my doctor and the lab order was sent last week in case I needed to retest but I need to talk to him about these concerns of mine and everything that's happened. I've since gone to counseling to work through the mental stress but when you feel so poorly it can only take you so far.
I am sorry you've endured all of this as well and I cannot imagine going through all of it with children. You are a brave woman. I agree that the ibs is a lifelong thing, I had ibs before this and everything is 10 times worse now. Antibiotics and infections just add to the problems. I'm so afraid of getting others sick and feel like I'm only in control if I clean. I wish more than anything for happiness and it's beyond scary to go through something for this long. I see that you are going on 4 years of dealing with these problems and I'm right there with you. Praying that you have continued improvement. Thank you for the well wishes.

jds0870
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Re: 2 FMTs still problems

Postby jds0870 » Tue Nov 29, 2016 6:35 pm

I was part of a Rebiotix trial in the 3rd phase where they did two real enemas in the gi's office. I did Vanco for up to 24 hours before the enema. They did not have me do the clean out before but honestly there couldn't have been much in there. I was one that vanco gave d too. I did them a week apart. It was a 4.5 hour drive both ways in the winter. After the second I was so sick with a f vet and flue like symptoms I called the on call doctor. I definitely get what you mean with how tired and sick you feel. I read some people seem to bounce back quick after the dnt. That's not the case for me. I lost 63 pounds..I needed to lose :) I had anxiety before c diff but it felt like it tripled after c diff. I would bleach so much I felt sick. When I was really sick I had to stop working and moved in with my parents I couldn't take care of my girls all of the way. I'm so blessed to have them because I didn't work for like 7 months and there were days I didn't get out of bed except to run to the bathroom. My girls would say mommy is your c diff back. I get how sick you feel and you literally feel like walking death. Although I still have bad days I have good too. Test for peace of mind. You will only drive yourself crazy and scared with worry. If it's positive don't give up... there's a guy on here Skizmazil he needed 4 FMTs to get better. What cured him was top up and top down followed by fmt pills next day. Don't give up hope. It could be negative. I was positive many times it was back. This time if it is you can use a different donor. Stay strong!

roy
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Re: 2 FMTs still problems

Postby roy » Tue Nov 29, 2016 8:51 pm

Okaylo
You seriously need to make your posts a lot shorter and not repeat things.

Please follow site rules and only post once a day.

okaylo
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Re: 2 FMTs still problems

Postby okaylo » Tue Nov 29, 2016 9:15 pm

Thank you for letting me know, Roy. By posting once a day you mean starting a new post correct? Not posting replies, right?

amyc
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Re: 2 FMTs still problems

Postby amyc » Tue Nov 29, 2016 9:57 pm

If you have the lab slip already there's no need to talk to the doctor before you submit the sample. Just submit it so you can get an answer. It sounds like this doctor has worked with you for quite a while, so getting into an argument over your donor choice can only be counter-productive. I understand your frustration, but your care will possibly suffer if you have to find a new doctor during a relapse.

We have all told you that you need psychiatric care, and I think you need to be willing to hear that. If FMT failed you need to take Dificid or vanco to see if the course of meds post C diff will cure you. But you can't work towards being cured until you submit the test.

okaylo
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Re: 2 FMTs still problems

Postby okaylo » Wed Nov 30, 2016 1:46 am

Amy, I went and got the kit today. I'm not looking to pick a fight with my doctor or find a new one. If I need another FMT down the line I'll use a different donor who's not related, living with me etc. I voiced my concerns/how I was feeling and we went over things... I have gotten so upset and have realized that dwelling on the what ifs now isn't going to help me. It's hard for me to accept but it will just harm me more if I do. I'm getting professional help and am willing to stick with it and hear it. My doctor thinks I may have a problem with my immune system and that I'm more suspectible to a lot of illnesses. I recently found out I have something called Porphyria after seeing a rhuematologist which I don't fully understand but with that, prolonged antibiotic use even before Cdiff, poor diet, and so on, my immune system most definitely is down. I'm doing the test as soon as I can.


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