Need some encouragement

[beth22]

So, you took meds after the first FMT because you tested positive and the FMT did not work. I'm still confused if you had a second FMT yet or not. If not, then that would be the next step. I have had more than one FMT because one does not always do it for people. Others have had the same problem. Once you get another FMT, you should not treat with Dificid though. Treat with something before the FMT to get the bacterial load down as much as possible and then do the FMT. That is the usual protocol.

[roy]

You say your a week out from your 2nd FMT.
To us that means a week after the procedure.

I think we are confused because what you mean is that you are having an FMT in a week's time.
Is that correct?

[okaylo]

Beth & Roy: Oh my goodness! I am so sorry for the confusion. I can see how my wording would've been taken that way... What I meant to say is that I am a week AWAY from having my 2nd FMT. I have not had it yet. I have been treating with Dificid prior to the upcoming 2nd FMT but have had horrible side effects and have just switched to liquid vanco to get me through the rest of the days. The hospital protocol says to discontinue meds 24-36 hours prior to the FMT... I know some posters have said they discontinued 48 hours prior to the FMT, so I guess different hospitals/facilities have slightly different protocols...

Beth: Initially, I took Dificid after my first FMT after I tested positive for the GDH antigen, negative for the Toxin A&B. Granted, the toxins were not detected but I was feeling awful so my doctor suggested trying the Dificid again. I ended up discontinuing the treatment because of the side effects. My doctor said that there was a possibility that I may have been a carrier at that point so let's see how I did off the meds completely. A month went by and I was still feeling bad. The only thing that allowed me to leave the house was taking Questran but I still had to deal with feeling toxic, nauseated, run down, and just a general ill feeling. It got progressively worse every day and I had that feeling that something still was not right. That's when I tested positive for GDH antigen, positive for Toxin A&B. My doctor said obviously discontinuing the meds was not helpful as the cdiff had continued to grow/produce toxins so here I am awaiting the 2nd FMT. Could you share your experience with having a 2nd FMT? Hope you're feeling a lot better!

[roy]

That makes more sense and ignore anything we said before this.
Your on the right treatment.
It's unusual to get symptoms on dificid (and side effects as it does not go systemic) but anything is possible.
Liquid vanco is the same med as the pills but you won't be the first to say it works quicker.
Always remember though is that it's the symptoms that need treating and not the test result.
When you have the 2nd FMT a test to see if it worked is next to useless.
C.diff is still there and the seeded good flora has to grow and go and kick it out.
During that time (many months for some) a negative or positive test means nothing unless the symptoms match the test.
Good luck.

[Jill79]

A few things from my experience for some mental encouragement.

- I also only presented with watery D for a total of 3 days, a few times each day, two weeks before I tested positive for toxins twice on soft but not watery D. Instead I had more localized stabbing / burning pain, cramping, hot flashes, sweats, chills, nausea and severe anxiety & panic. My GI felt that I had a mild case or we caught it very early.

- I agree with Beth that it is humanly impossible to kill every spore. I had and still occasionally have the "remote" and "bedding" phobias you speak of. You're not alone! :) I've bleached my phone a few times with the germicidal wipes and didn't care about the consequences but it survived. I wash my hands before I fold clean laundry. But the bottom line is if you're not having accidents all around your house you should try and just focus on washing your hands thoroughly after using the restroom, before making food and eating or any time your hands will be around or in your mouth. I just made sure to flush with the lid down, bleached only the toilet after each BM wearing a glove and using the wipes, wiped down the sink every few days and cleaned / bleached the floor as I normally would once or twice a week. I also use my elbows or a paper towel to touch switches, faucets, doorknobs, etc. The cleaning makes you feel in control, but it also keeps your mind and body busy and not idly over analyzing everything. The only way for me not to obsess was to push myself to do things to occupy my mind, sometimes cleaning was one of them. Try to find something other than cleaning that makes you happy and that your are physically able to do. It could be anything, drawing, painting, crafting, gaming, etc. The hamster wheel in your mind can be stopped when you're distracted by something else. I know, easier said than done. :)

- I'm a hobbyist photographer and have done weddings, maternity, newborn and engagement shoots. I've had an anxiety disorder with panic attacks and IBS for years and worried that my stomach would be off on the day of a project even before C. Diff, but especially now. In fact I started the photography to purposely push me out of my comfort zone and it worked! Eat light and bland the night before and morning of the photo shoot and discuss your concerns with the photographer. A good photographer will take that into consideration and can pose you a certain way or edit the photos afterwards to minimize any scars or marks on your hands. That day to celebrate you and your fiance, you shouldn't have to shudder when you think about it.

- If your skin is raw, you should try to cut down on overdoing the hand washing and cleaning, please use gloves when you use bleach and use a good moisturizer after you wash your hands and before you go to bed. You have a week and a half roughly. Put "Pamper My Hands" on your to do list and it might give you another feeling of being in control. :)

- I've been in counseling for years, even before this, and it really does help.

I've never had a FMT or took Dificid, and I'm not providing any medical advice, just trying to give some encouragement. Just my 2 cents. I hope the pictures go well and you get the treatment and relief you need. :)

[roy]

Good post Jill!
Thanks for giving something back to the site.

[Jill79]

Thanks Roy! :)

[okaylo]

Roy, thank you for checking back in. Sorry for the initial confusion. I appreciate your insight and good wishes! :)

Jill, thank you for reaching out to me. I ended up rescheduling the photos for the end of the month just to ease my mind and give me some time to relax/recover... I really appreciate your kind words and suggestions, you have no idea how nice it is to hear... I think my cleaning regime has gone above and beyond as I wipe every part of the toilet with bleach spray and a paper towel including the handle and then clean the bowl with cleaner that includes bleach plus regular bleach out of the bottle. I then wipe the floor surrounding the toilet with full strength bleach. The faucet and counter gets a full wipe down with bleach spray and full strength bleach in the sink. I only use one bathroom and one sink so I don't have to endure anymore cleaning. I know it is extreme but it just gets in your head and takes control. I don't even flush the toilet or close the lid with my hand, I use my knee if I've had a BM and I use my elbows to turn on the sink, my arm to turn lights on and off, etc. Oh, and I use my feet to push doors open, so silly but I haven't gotten past it yet... My Mom keeps reminding me that I don't have "stuff" on my hands and that I need to take a deep breath but easier said than done.
When I shower, it's the same thing using my arms to turn things on and off unless I've actually washed my hands again prior to turning things off. I over wash and my hair is drying out because I've been washing it twice a day. I wash my hands after I get out of the shower too.. I just don't feel clean otherwise. I think everything has gotten more extreme since I have endured this so long and my fear has increased over time. The first time I had cdiff I did not even know anything about cleaning and no one in my house ever got sick and I had very little anxiety. I even went almost a whole year clear of cdiff and was told I probably got it again from an outside exposure (presumably from a non-immediate family member who had recently been hospitalized and treated for cdiff, but I will never really know).
I clean the bathroom at work and I don't even have BM's there. Everything is super clean but like you said it makes you feel in control. I am going to try and find something to occupy my mind and fill my time. My fiance and I are looking at a guest house to rent and are planning to move out together after 8 years and I really want to be excited but it's so hard to focus on other things... I have been thinking about joining a church or some type of group so I am not constantly at home scared and upset, I hope to get to a stabler place soon.

[Jill79]

Okaylo,

Here's what I did while I was sick and on treatment. Gloved one hand for wiping, putting the lid down and flushing. I then kept the glove on and used a bleach wipe (clorox germicidal) on the handle, lid, seat, etc. I have a bleach tab in my tank so I don't clean the inside unless it's been a while or the tab ran out. I would peel off the glove with the wipe inside and toss it. I would and still use my hands to turn on the faucet, wash and rinse thoroughly and then use my elbow to turn off the water. I don't clean the floor until I cleaned the whole floor 1-2 a week, and no need to clean the floor around the toilet unless it's soiled. I only wipe the sink down every couple days with gloves and the germicidal wipes.

In the shower I don't use my elbows because the shower is the whole body version of hand washing. I spray the shower down with the wand after each shower and only bleach the tub as I normally would. Can you try only washing your hair once a day? It might make you feel better about yourself if it stops drying out from too much shampooing.

I can't stress enough that it's impossible to kill every spore and the over cleaning is unnecessary if you are not having accidents and properly washing your hands after the bathroom and before eating. I have to just keep telling myself that and the obsessive cleaning or stressing about touching things gets less and less.

So glad you were able to reschedule your photos to give you some more time to recover and work on healing your hands. If you're hands are raw, chapped, cracked or have areas of broken skin, you could get another infection. Really try to make a point or a goal of some TLC for your hands. Are you planning to get a manicure? I would consider the manicure and photos a reward for completing a goal! If you cut down on washing your hair and treat it with a nourishing conditioner, treat yourself to having it cut, colored or styled before your photo shoot as a reward.

Again, I haven't suffered the severity or extent that you have, but still to try to share some of my personal experience in the hopes it can help others. :)

[georgina]

There is a balance, its important to clean, but not to become excessive.Too much cleaning never allows our bodies to be exposed to germs and gain immunity against them.Is good to have some dirt from time to time :)).In the beginning I cleaned constantly but now not so much, i am only cleaning the toilet every time i use it for BM and the sink . Careful hand washing is essential, I wash really, really well. I think we've gone over board with the whole fear of disease and sickness.Agree with Jill , overcleaning is totally unnecessary.You cannot stay away from Cdiff forever , it is everywhere , in the soil , in the raw meat , everywhere!

[beth22]

Okaylo - To answer your question about my second FMT. I prepped with vanco and stopped about 36 hours before I think it was. It doesn't matter that much if it is 24 or 48 because you do a laxative prep for a colonoscopy transfer and that gets rid of any of the medication left in your colon. For my second FMT, I had both upper and lower endoscopy. I was not able to hold in the colonoscopy deposit. Unfortunately, my laxative prep worked late, but when it worked, it kept on working. I think I lost most of it, but I still had the upper transfer.

For my first FMT, I took two Imodium before the procedure and two afterwards. I was able to keep the FMT in for a few days. For the second FMT, I took only one Imodium before. Ask your doctor about that -see if he/she recommends taking Imodium before and after and how much. Most people lose some of it, but you don't want to lose all of it. If you had no problems with whatever laxative prep you had the first time, then I would do the same thing again. I drank that big container of GOlytely the first time and had no issues. The second time I used an OTC magnesium citrate and it took a long time work, but then kept on working and working and that is what messed up the FMT. Good luck and think positively. Many have been cured with a second FMT.

I would try and cut down on all that cleaning. I have to say, I am pretty lax about that type of thing. After you do your laxative prep, then obviously, clean the bathroom well, but after your FMT, I would really try to relax and just do the common sense cleaning that we all do. My husband never got c diff from me and I doubt that I re-infected myself from spores in my house. Let the FMT do its job. I had off days for sure. I tested several times and the c diff tests were negative. I did have SIBO however, and that was responsible for many of my symptoms post FMT.

Let us know how it goes.

[okaylo]

Jill- Thank you for your suggestions. I think I am going above and beyond here and doing things unnecessarily. It is just very hard to stop once you've gotten in a routine no matter how bad you want out of it. I am so excessive on the cleaning that I think it is actually the main cause of the anxiety. I wash my hands so thoroughly and you are right that you just have to tell yourself it is okay, you've done what needs to be done. I have been putting Aquaphor on my hands at night and sleeping with gloves on... I am hoping that I will be able to reduce the hand washing soon. I am planning on getting a manicure before the photos, I think it will be a nice boost plus the haircut and color should make me feel better about myself as well. Thank you for that reminder. This whole journey has just made me feel like a diseased and dirty person and I have to get myself out of the mind frame and start treating myself like a normal human being again. I have to stop contemplating every hypothetical situation and mentally torturing myself. I'm now worried that my hairdryer cord could have something on it because it touched the sink momentarily, which is silly because I don't have anything on my hands when I wash them. I have to break the cycle, I know. I really appreciate you sharing your experiences and offering valuable advice.

Georgina- Thank you for your reminders as well. It is just difficult because the cleaning makes you feel in control. I will keep what you've said in mind, I think often the fear is the driving force behind a lot of illnesses.

Beth- Thank you for sharing your experiences regarding your FMTs. I have taken Prepopik for my colonoscopies and it has worked well. I have been able to stop going before reaching the hospital and having the procedures. I did take magnesium citrate when I had a partial sigmoidoscopy and I remember having the same experience as you, it took forever to work and didn't kick in at the right time... I will do my best to think positively and cut down on the cleaning. That is my biggest fear, reinfecting myself or infecting others. My doctor told me that unless you are around someone who is immunosuppressed (receiving chemo etc) that a normal healthy person is not going to get it. I just have to remember that and keep calm. I know I need to let nature take it's course but sometimes waiting is the hardest part. Since your FMT's have your BM's firmed up? The only thing that has helped me in the past has been Questran, it really cut down on the anxiety of going to the bathroom... I will ask my doctor about the Imodium again. I asked after the first FMT and he said it was not necessary but I will ask again.

My FMT is tomorrow. I will keep everyone posted.

[beth22]

Good luck tomorrow, and yes, after the FMT my bms did firm up, although I had a period where they were all over the place. Sometimes solid, sometimes not. It may have been IBS or the SIBO. But since I did home enemas, things have been much better. I get C sometimes, but I was like that before c diff anyway.

Try and relax after the FMT and let your body heal. I find when I am very anxious, that is when I will catch colds, etc. Anxiety runs the immune system down in my opinion and there are a few studies out there that indicate the same thing. I do best when I am working and my mind if on something else. You WILL get better. Let us know how it all goes tomorrow.

[georgina]

Good luck tomorrow! I'll pray that this FMT puts an end to this Cdiff misery , for you.
Don't forget to ask about Lomotil or Imodium to help you keep the slurry in for a couple of hours.

[okaylo]

Thanks Georgina! I ended up holding the donor stool in for almost 48 hours! Last time I was only able to hold it in 5 so that's an accomplishment right there. The day after the FMT I felt like I died and went to heaven. No bowel movement, minimal pain, no upset... It was magic. Today I woke up with my first BM (diarrhea). I know it is going to take some time for my body to acclimate due to the long use of antibiotics and history of IBS. I am trying to maintain a positive attitude. I will keep everyone posted as time goes on.