Back again or not...

[okaylo]

I had my second FMT close to 2 months ago. The recovery has been up and down / all over the place and every day is a surprise. Paired with the PTSD and anxiety it's enough to send you through the roof. I have since sought professional help and counseling to combat the mental stress of this but when you feel so poorly, the counseling only goes so far. I have a host of other issues including SIBO, IBS, etc but picked cdiff up along the way. Today I woke up with the most intense pain and burning I have ever experienced since I first got cdiff back in 2014. I wake up with pain and urgency every morning but this was by far the worst day. I've gone 3 times and for a lack of better words it's yellow and muddy. I'm extremely nauseous and my gut is on fire. I could barely take a shower this morning after I bleached down the whole bathroom and I'm back in bed with a heating pad. I have a suspicion this is all coming back again and I cannot even begin to fathom the reality of what may be going on. I'm so frustrated as I have so many things I want to be doing and the only thing that feels remotely good right now is laying completely still with heat. I feel like I'm dying. Has anyone else felt this way after an FMT? I don't know if my other issues are coming into play or what to do. My diet is very limited and I basically eat rice, crackers, chicken, tortillas, turkey,, Rice Krispies, egg whites and I dared to try a little avacado the other day. My doctors only suggestion is to retest if this continues. I have promised myself I wouldn't retest and would give it time but it is getting really bad. This has gone on for so long and it doesn't seem like the nightmare is over. Probiotics make things worse for me so any other suggestions are appreciated. I've been on Questran, acid blockers, a million antibiotics, Antidepressants to slow my gut down, antispasmodics, and more. I've tried natural and holistic supplements and nothing has worked. I know my gut is destroyed and the bad bacteria is just wreaking havoc but nothing has helped. I'm worried. I know my body isn't getting what it needs nutritionally but I cannot handle a majority of foods including fiber, veggies, fruits or dairy. I also have recurrent yeast infections. I don't know what's left besides a 100% liquid diet. This is just exhausting. From cleaning, worrying, feeling like crap (literally), missing out on so many things and not having the strength to live life normally. I feel like I'm going crazy. I flush the toilet with my knee, turn lights, faucets, and doors with my elbow or shirt, flush with the lid down, clean like crazy, and even throw clothes away that aren't dirty. Cleaning and doing laundry is the only way I feel remotely in control of something. The rest of my family is healthy with no issues and cannot understand. My mom had cdiff 5 years ago when she was in the hospital for sepsis but recovered quickly. She was my donor for both of my FMT's and my gastro docs and infectious disease doctor said my mom was fine to be a donor as she had it 5 years ago and was clear on all the donor tests. They said she still had trillions of beneficial bacteria in her colon and I shouldn't worry. Going through this has caused me to question everything and there are days where I don't even know myself anymore. Again, I am getting professional help but it always helps to hear from those who have gone through it.

[amyc]

I would re test, and if you are positive again I think you should try a different donor. People seem to have good luck with open biome. Hopefully it's just a bad day.

[roy]

I am VERY suprised they used your mom as a doner if she has a history of c.diff.

A bit of advice.
If you make your posts a lot shorter they will be more readable.
Most people will skip reading long posts or just read parts of them.
Anything over 12 or so lines and people just move on to the next post.

[okaylo]

Thanks Amy and Roy.

[beth22]

I am surprised that the doctor felt it was ok to use your mother as a donor. If you are positive again, don't use anyone who has had c difficile. OpenBiome is a good idea if you don't have anyone else that you can use.

[okaylo]

Beth, they all reassured me it was fine... But now my mind is spinning. I told my Mom and Dad about it and my Dad was just quiet and my Mom went off and said I'm continuing to look for something to be wrong and that the doctor wasn't wrong. I really hope this is just a bad day. I don't want to do it a third time.

[georgina]

If your mother had Cdiff years ago it makes her a unsuitable donor. Your mom shouldn't donate for you anymore. Beth gave you a good ideea to use Openbiome next time or go to a clinic where they use their own donors like Mayo clinic or RDS infusions in Tampa.

[okaylo]

Well, I don't know why the Chief of Gastroenterology at the hospital who did my FMTs would've told me it was okay if it was not. So, I endured both of those procedures for nothing? I'm at a loss for words right now. I cannot go through this again.

[Bobbie]

Call the GI doctor tomorrow and ask him these questions,

You might be OK. Sometimes, It takes awhile for a FMT to work. Do not panic yet.

[okaylo]

Bobbie, I have a call in to my doctor to express my concerns. Waiting to hear back... :(

[amyc]

Just ask for the test. While I personally wouldn't have chosen a donor with C diff history, I believe picking a fight with your doctor won't do you any good.

[Bobbie]

Agree with amyc. Find a new doc before you dump the current one,