4th FMT and struggling

[skizamii]

So I had 60 cc's top down/480 cc's bottom up FMT at RDS infusions in Tampa Monday followed up by 20 FMT capsules the next day. It was a really positive experience and I was hopeful. I was doing ok until Wednesday afternoon, I ate Wendy's in the airport and got really lightheaded, dizzy, nauseated, and started to have stomach rumblings. That night I started VSL#3 per Dr. Shephards instructions. That night I woke up sweating profusely, nauseated, stomach was churning. Yesterday started back on Enteragam Per Dr. Shephard. Yesterday morning I had a bout of flu like symptoms in the morning followed by some yellow/greasy stools. Ate dinner last night and took my VSL#3 again. Had a horrendous night, stomach churning, achy, couldn't sleep much and woke up this morning with full on watery diarrhea at least 8 times, couldn't even make it to work without stopping. Weakness/dizzy/lightheaded, fatigue, cramps, abdominal pain, bloating, flu like symptoms/body aches, Difficulty eating, Skin crawling, & Racing heartbeat. Feels like a really bad flu. I've also been having stuffiness in my hands/joints, numbness/tingling in my feet, shooting nerve type pain, severe anxiety and depression (depression is new), can't sleep at night.

I called Dr. Shephard and he said I should go to the ER to be evaluated and/or get a stool test to see if it is C. diff, didn't really have much to offer. Really struggling not to loose hope. I see that FMT's can take awhile to work...anyone else have similar experiences? Can VSL#3 cause this? Dr. Shephard said IBS/D is normal after FMT and it takes awhile to work, but the flu like symptoms make me nervous. I never had flu symptoms with IBS before.

[Lisa33]

So sorry you are so sick. I'm sorry that i do not have any experience to offer as I never had an FMT, but I would think that this could not possibly be c-diff again, given that you just had all of those procedures. I know that you need to be medically evaluated, and we cannot offer medical advice, but given all the treatment you just did to cure you, I would think that all of that has to have some after effects on your body. I don't think it's an over-night cure, as many on here who have had just the colonoscopy FMT had suffered with D and other symptoms after the procedure. It seems to take time for things to improve and to feel "normal." I guess there is always the possibility that you caught some sort of bug simultaneously with the procedures, but would be coincidental. I would definitely get checked out and make sure there is nothing else going on. But if you were to tell me that this is c-diff after all of those procedures, I would be extremely shocked.

My heart goes out to you. You are one of the posters that really has been through the mill and I always pray that you come on here and post that you are doing better. I am sending you prayers that even though you are feeling so ill, that the procedures all worked and the c-diff is gone for good.

I hope you feel better soon.
Lisa

[beth22]

I never had that after FMT, but I did have it with an infection I got post c diff - campylobacter. If you got a virus of some kind of another pathogen, it could easily do that. I would ask to have your stool tested by culture for other pathogens. Maybe the donor had some other bug, which can happen, or maybe you got a virus. Norovirus is going around in many states.

I hope you feel better soon. FMT can give IBS, but your symptoms sound pretty severe. I don't think c diff would come back that quickly, but might as well test for that too.

[skizamii]

Update...it worked :-) I just realized that I haven't posted anything positive here, I'm so sorry. My gut is gradually healing, my appetite is returning, and very little D...actually much less than I ever had prior to C. diff.

I can't recommend RDS infusions enough, Dr. Shephard knows his stuff. He cares and understands c. diff more than others I've talked to. The FMT felt a bit more "fly by night" than mayo, no fancy office, the colonoscopy facility is not all that impressive, but the results are what matters. RDS has the highest success rate and it's cheaper and generally easier than going somewhere like Mayo.

What I've learned:

1. FMT via colonoscopy is generally most effective. In hard cases with RCDI FMT via colonoscopy and EGD (top down and bottom up) may be needed. This plus FMT capsules is what finally worked for me.
2. Don't over analyze your symptoms. If you aren't having watery diarrhea for 3 days in a row, don't worry.
3. Your stool isn't going to look the same, maybe ever again. So how it looks, smells, etc. Isn't an indication of c. Diff unless it's watery D for 3 days in a row.
4. There is no such thing as antibiotic resistance, all strains are sensitive to either vancomycin, dificid, or flagyl. Mine WAS resistant to flagyl...so when they tried that it made it flare up as it killed off good bacteria and not c. Diff. So if you've only tried flagyl, then you would need to move to vanco or dificid.
5. Be careful about fear and anxiety, it was/is my worst enemy. Thru my actions I made things worse and actually caused recurrences.
6. Don't over test. I kept doing this, freaking out, got put on more meds, which may have caused relapses.
7. the Antibitoics are HORRIBLE. I developed severe reactions to all of them...after people have c. diff for the first time and try a couple rounds of flagyl, vanco, or dificid and it doesn't work...just do the FMT. I actually think that FMT should be the first like of treatment.
8. Not all FMT's are the same. Its still guess work, and it all depends on where the material gets placed, the quality of the sample, and quantity. Go someplace that has done a lot of FMT's, somewhere you can trust.

[richlin]

Skimazzi,

It is so good to hear from you. I was following your thread and at your last post I thought something absolutely horrible happened. It's really awesome to hear its positive news and that you are improving.

I'm still struggling after the FMT. It's pretty unfortunate because I did FMT for my IBS which got me cdiff. My IBS symptoms previously were nothing compared to the c diff and my recovery now.

Do you still have formed stools? Less frequency? Sleeping better?

[skizamii]

No sleep, but that is another issue altogether. Because they couldn't diagnose my c. diff for awhile, docs thought it was in my head and put me on psyc meds. I'm off them now, but the withdrawal and recovery has been extremely difficult. So this is one of 3 forums I'm on :-)

My stools are mostly formed...kinda weird looking but I've given up worrying about them! Once and awhile I'll get D, but it is usually in the morning and due to excessive anxiety.

Did the place you got your FMT from not test the stool for c. diff? Hard to believe but that would be grounds for a malpractice suit if you could prove it...

It takes awhile post FMT to recover, it really does. I didn't want to believe it, but the first month after FMT was really difficult. It will get better...

[richlin]

Unfortunately, I did a DIY FMT. Which means untested donor (my brother). He didn't mention to me he was having gastro issues. His sample was borderline bad so it's really my fault.

I've been having excessive sleep issues from the FMT. Literally wake up around 4x a night. Also bene having trouble falling asleep (not till 5am) but I blame the jet lag for feeling so horrible.

I noticed if I get a full nights rest my stool is a lot more formed and darker. For some reason when I went to taiwan and switched time zones I slept like a baby. Albeit, I was going to the bathroom around 3-4x/day it was formed. Also I had more tenesmus (feeling of needing to move bowel movement).

Otherwise, I'm glad you are feeling better. It makes me happy even though I've never met you.

[Lisa33]

Skizamii - I can't begin to tell you how happy I am for you that things are going well and you are FINALLY free from the c-diff. You have been one of the posters that has really struggled down a long, hard road with this, and I always prayed that this day would come for you. This is such great news! You can give others so much hope as you are living proof that even the most resistant of c-diff will be cured. It was definitely not an easy road for you, but you are so strong and you can finally move on from that dark time. Congrats to you, and please post in success stories when you feel the time is right. We can all use the positive news and stories!

God Bless and continued health to you,
Lisa

[georgina]

Hi Skizamii
I'm so very happy for you , i can't even put that in words.I followed your posts and i know you had a really hard to get rid of case of CDiff , and i prayed for you to get well.I hope someday you will get brave and write a succes story.Great news!!!I wish you a speedy recovery!

[NikaNik]

So happy it worked, skizamii! You've been through so much - I wish you a lifetime of health and happiness!

[richlin]

@skizmazz

What were you doing those 2 months from when you first got FMT till when you said it worked?

Were you just living life and symptoms started abating?

[skizamii]

Yes, mostly...I was on Enteragam as well which I think helped.

[richlin]

@skizamii did you get any mood issues after FMT? Since I know you used multiple different drs so different donors for transplant.

I noticed when I watch movies that cause high adrenaline it causes me to have physical issues (anxiety/depression)?

Also I don't know how open you'd be to try a ubiome study for the gut, but it'd be really cool to share data on how the FMT has changed our microbiome

[skizamii]

In short, yes I do have mood issues right now including what you described. However, I also had these issues before the FMT's. I potentially have 3 things going on right now:

1) Spiritual/emotional - I am a Christian and have been working through some spiritual battles since going to China. There is a battle raging around us and that has significant impact on our physical bodies and minds. When I am right with God and trusting him completely things are SIGNIFICANTLY better regardless of what else may be going on physically. The power of God heals and overcomes my physical weaknesses. When I take my focus off my physical issues and focus on God, these issues are so minor they hardly impact my daily quality of life. God heals...I attribute any healing to him.
2) Psyc meds - When I got back from China I was put on a slew of heavy duty psyc meds. I had only low grade generalized anxiety before, no history of depression. I have since come off from them and there is a long withdrawal and healing process associated with these meds. It can change the chemistry of our brains, and unfortunately a good portion of the medical community thinks that once the drugs are out of our systems things are "normal". If this is an issue like I'm being told can be the case, it may take several months if not a year or more to stabilize as CNS receptors re-grow and relearn how to function. I don't know if this is a real issue or not, but again...see #1 above :-) I'm waiting this out and trusting that if there is an issue, God and time will heal.
3) Gut - There is a lot of research out there with the brain-gut connection. Supposedly certain strains of naturally occurring bacteria produce serotonin in the gut which gets to the brain. FMT's are being used to TREAT depression and anxiety, so I refuse to worry about the FMT's causing this. For me, if my microbiome was impacted, it was due to the HUGE amount of antibiotics I was on over the last year. My recent psyc/emotional issues started 3 days after I began Flagyl back in December, not after the FMT. I also had issues prior to starting the antibiotics in December, see #1 and 2 above. With that being said, I am taking certain strains of probiotics to help keep things balanced. Specific strains include Bifidobacterium Infantis, Lactobacillus rhamnosus, l. casei, Bifidobacterium longum, and Bifidobacterium breve. Again, there seems to be some good science and research behind this, but see #1 above :-)

I don't know where everyone else is spiritually but I can say with absolute confidence that God is real, Jesus came to save and heal, and the power of the one that created us can heal and overcome our weakness if we trust him and let him. I have been healed miraculously in the past, this time I believe its about the process as I grow and become stronger. I'd encourage everyone struggling with c. diff, emotional/mood issues, psyc issues, etc. to reach out and put your faith in him. I'm not advocating no meds, im still on one myself. but God's presence and power is more effective than any meds and there are no side effects :-)

[richlin]

Praise the Lord that you see that Christ is the ultimate healer. This life is temporary and we are but citizens in this world. Christ and our glorified body that has no sin in the resurrection is all the more our treasure seeing what the best this world has to offer. Hold fast to Him even in this disease and He will use it for His glory.