Need some encouragement

[okaylo]

I am a long time c-diff sufferer who is 26 years old. I have several other gastro issues but c-diff is by far the most mentally and physically taxing thing I have ever had to endure. I've already been through countless antibiotic treatments and an FMT that failed. The mental strain and anxiety of this disease is enough to not want to even get up in the morning. I have cleaned vigilantly since my last contraction of c-diff back in December 2015 (I am still fighting this). I have spent so much money on cleaning products I could open my own store. I have become even more OCD than before. My hands are raw and bloody from washing them so much. I clean the toilet repeatedly on a weekly basis and cannot stop. My doctors have told me that I should not consume myself with cleaning but it is so so hard. This disease controls your life. I have had anxiety/panic attacks over this many times.

My latest episode came a few days ago. I had cleaned the toilet and the floor thoroughly with bleach products a little earlier that day. I got into bed to watch tv that night and one of the remotes hit my foot. I immediately freaked out and thought "Oh my God, my foot may have gotten spores on the remote." I took a deep breath and told myself I'm not doing this to myself anymore. No more mentally torturing myself and constantly getting the gloves and bleach out. I calmed myself down and resisted the urge to clean. Two days went by and I had cleaned the toilet and floor again. This time my foot hit my cell phone in my bed and I had the same freak out moment except this time I could not control it. I got up early that morning and cleaned the remotes, phone, and even went and got my iPad and cleaned that. I had a full disinfectant station set up outside on the patio. I ended up dropping my iPad on the concrete and shattering the screen after I saw some residue on it. Now, I know that it was not from feces but my mind immediately went there. I sat on the patio and began shaking and crying. I was so overwhelmed by what had just happened and that this is what my life had come to. I threw my iPad away. My cell phone wouldn't even turn on because of all the bleach I put on it. I ended up having to get a new phone. I am resisting the urge right now to go clean my work station, truck, and anything else I may have touched after my "foot episode." I know this is not healthy but I feel like I'm going insane. People who haven't had c-diff have no idea what I am going through. I make cleaning checklists, record when I clean, I vacuum at least 3 times a week at work and at home and clean and organize in any way possible because it is the only way that I feel somewhat in control. I constantly replay situations in my head and go over what I cleaned and if I did it well enough.

I still cannot stop washing my hands and wash them pretty much after everything I do (I go through a bottle of hand soap a day lately). Even when I fold clean laundry, I have to wash my hands after. There are doors in my house that I will not go in or out of because I'm afraid there is something on them. There is a dog gate that I won't touch. If I have to touch light switches, handles, etc I use my elbow or my arm. I know this is not normal and I so want to get back to my old self again or at least to a healthier state of mind.

I am engaged and my relationship with my fiance has suffered greatly. He has been so understanding through the past 3 years since I was diagnosed with IBS and this rollercoaster started but I can tell that this journey has worn on him. I am afraid to take my engagement pictures because my hands are so raw and also because I'm afraid my stomach will act up while I'm taking them. The pictures are 3 weeks away and I am literally shuddering at the thought of it.

I am going to be having a 2nd FMT that I pray will resolve this once and for all. I'm already rehearsing in my head what will happen and planning the cleaning of the bathroom before and after the prep. I am trying so hard to remain positive and hopeful but this diseases grips you so tightly and I feel like I cannot breathe. I guess I am just looking for a friend in all of this and someone to talk to.

[beth22]

I think that it might be a good idea to get some counseling. C difficile is such an anxiety producing illness because it is so unpredictable. You are not the only one who has posted similar experiences. I hate to say this, but no matter how much you clean your house, you can't control the outside environment. Any time you use a public toilet or even walk around someplace, you get so many germs and various bacteria on your shoes. Studies have shown this. The idea of FMT is to enable your digestive system to not get c diff, even when you get the spores in there. Hopefully, this next one will be your cure. Do you take probiotics? Ask your doctor if he or she recommends this after the next FMT. I still take a small dose after my FMTs.

Some people have also taken anti-anxiety meds and they have helped. I am not a good one with reactions to meds, so I have not done this after amytryptiline made me feel like a zombie. Find something to relieve your stress. Exercise helps some, praying others, joining a group of some kind. Also, if you get cuts on your hands, that is also a way to get bacteria in them and get an infection and you don't want to do that. Use gloves to clean and no need to wash that often. Again, sometimes counseling can help with these issues.

[Bobbie]

Agree with Beth. C diff can ruin your life - if you let it.

Get some counseling. Many of us have. Buy disposable gloves. Walgreens, CVS, and similar stores sometimes have them on sale.

You are now with a group of people who understand. Welcome to the site.

[okaylo]

Beth,

I have seen a therapist and tried to explain the illness a bit but the average person just doesn't understand the weight of it... I avoid public restrooms at all costs and I never wear shoes in the bathroom at home but I totally get what you are saying. There's no avoiding germs in the outside world. I have tried many many probiotics and haven't reacted well to any of them. They just make my stomach more upset unfortunately. I have tried antidepressants and anti anxiety meds and I cannot function. Same zombie effect you've described. Coming off of those was no joke either. I have disposable gloves and they are my saving grace. I appreciate all of your suggestions, I am going to try taking a walk in the evenings and possibly find a group as well. Thank you for reaching out to me. I truly appreciate it. Thank you Bobbie as well!

[beth22]

I saw a therapist too and she told me that my depression was called situational depression and it was because I was sick. When I would get well, then the depression would get better. Gee, do you think? I'm sorry that the therapist was not of much use to you either. Sounds like you at least gave it a go. Sometimes just having a good friend to talk to is helpful too, even if they can't come up with solutions. You can always reach out to the people here because we understand totally where you are coming from. I don't go to the extremes you do with cleaning, but I am much more careful than I used to be.

I can't take probiotics much either. Those of us with SIBO have problems with them. What I do is just take part of a capsule with a little applesauce and the small amount does seem to help. I use VSL#3. I tried others and they did not agree with me. Florastor was the worst. That IBGard product has helped some. It is just peppermint capsules that are encapsulated I think. You can find them at the drug store OTC.

Well, hopefully after the FMT things will improve. Try using hand lotion after you wash your hands. It does help some.

[georgina]

My greatest "therapist" is my dog . I'm still on antidepressant and they did help but my mood was better after i got Toby .I used to cry myself to sleep for days ,and now it has been 2 months and i never cried a tear even if my day is awful . It has changed me so much , he is bringing me so much joy even when I have my worst days and i am a long time sufferer of Cdiff as well . Had this since april 2015, and don't think i get over it but no full blown symptoms until now so i won't test. Cdiff messed my life so bad last year along with his friend Mycobacterium tuberculosis : couldn't enjoy my wedding because of it , no honeymoon , no babies (and i would love to be a mother) no Christmas , biggest depression , worst insomnia , panic attacks , i was heartbroken too when my FMT failed after 7 months of negative tests etc etc etc ... Ohh , the joys of Cdiff! Dificid is not an option for me because in Romania is not on the drug market (written loads of letters to the health minister , asked infectios diseases doctors if they have samples , spoken with Astellas company that produces it in Europe if i can get a discount to be able to afford at least the 10 day course)
,so other then getting another FMT i have no other option.
Don't just stay home depressed and go out , enjoy the good days , go shopping , go for a walk , a movie , do something you love and it will make you feel better. And please stop that obsessive cleaning , it is enough to clean your bathroom and wash your laundry separately and wash your hands thoroughly after bathroom use or before preparing meals. Cdiff spores are everywhere , as Beth said , you can't hide from it forever!

[Ismaila]

Okaylo,

You are not alone - I have been on anti-anxiety medications since I got sick last February, I am constantly obsessing , ruminating 24 hours a day: Did I somehow re-infected myself, or whether it will just come back out of nowhere. My new GI put me on Amitriptyline, which is one of the oldest anti depressants medicine, that has been proven to help IBS too. This thing has practically taken my life away, and is running it on its own will. My family suffers as well. I will not bother you with my germophobia details - you can only imagine.

I am trying not to lose hope. So many people got eventually cured, even after suffering for a long time. Actually, most of the people eventually are cured. Please, please do not lose hope. You will get cured, you will have your life back.

PM me if you ever need a friend to talk to.

Ismaila

[NanciT]

Okaylo,
It is very common for so many of us who have been through several relapses over a period of time to become extra vigilant in our cleaning and obsession. One thought I want to share is as time passes, I realized I actually needed to have some typical normal bacteria and dirt around. I spent so much time trying to get rid of it, I found my road to wellness included have it around. Adapting back into the "general germ world" would allow my body to build up once again. My issues with food was really terrible, I could hardly add new foods after a 3 month taper of Difcid but I had to push myself and yes at times I got sick, sometimes for 2-3 days of D but I pushed through.
I know you are not there yet as you are still fighting the beast, but you will get there. Many have had a second FMT with great success. Give yourself the time you need emotionally to walk through this illness. If the therapist you have is not helping, find another. I changed GI's 3 times through this illness, sometimes we have to move on to find the support we need. If medication is not working, possibly ask to try something else.
It is such a difficult battle, and I believe no one can understand it unless they have walked in your shoes.
Wishing you the best with the FMT, you WILL get past this. We are here to understand and support
NanciT

[okaylo]

I truly appreciate everyone's suggestions and support. Thank you for reaching out to me. I am a week AWAY from my 2nd FMT and having extreme difficulty with Dificid. It is making me so sick with diarrhea that wakes me up each and every morning usually by 6:00 AM, extreme abdominal pain, nausea, weakness, and so on. The little amount of food that I do eat is just running right through me. I may be switching over to liquid Vanco for the next week, has anyone tried this option? (I've only had the pill form before). The liquid Vanco was suggested to me by an infectious disease specialist. I was informed that not everyone will react well to a certain medication and it truly is on a individual basis... I guess I'm one of those people who isn't reacting well...

I've read some posts on here that people did not feel well throughout their Dificid treatment. Any shares on experiences are welcome. I just want to be done with this. The obsessive cleaning has continued and I'm to the point where I don't even want to lay in my bed as I'm afraid there's something on my blankets etc. This is absolutely insane. My hands have gotten worse and the washing continues. I never thought something would take such control over my life.

[amyc]

Did you take medication before your FMT? Did the FMT fail? It seems odd to do an FMT and then immediately start on Dificid?

[MKW]

Okaylo, I can completely commiserate with you on the obsessive thoughts and cleaning, and the condition of my hands. I bought a box of blue nitrile gloves and they have helped a lot. I have been dealing with C Diff for about two months. I was well for 4 weeks and it just recurred over the weekend rapidly with severe symptoms and am now on Vanco. I bleached and cleaned and washed everything in my environment repeatedly and regularly, as much as I possible could have within reason, and my C Diff still recurred. I have thrush also. I think I just feel contaminated, diseased, infected, and feel the need to wash my hands constantly and that everything in my environment I have touched is contaminated too. I have two teenage daughters that I constantly worry could be exposed to this within my household. I worry about using the bathroom at work, and exposing someone there. And then of course is the knowing that if I neglect anything, it may cause me re-exposure later and the nightmare will happen to me again. In many ways I think it's a normal protective response. But I know now that this is something I may be dealing with for a while in my life, and I have to come up with practices for sanitizing and a cleaning routine that is practical and livable and not obsessive. Like you said, this problem takes control of your life. I have to say for me, C Diff is the most difficult medical problem I have ever had psychologically and emotionally.

[beth22]

I have the same question as Amy - are you taking Dificid before the FMT or are you taking it after? I have never heard of taking an antibiotic after unless the FMT failed.

[roy]

Beth and Amy are correct!
Antibiotics after an FMT is not a recognised procedure.
Normal an antibiotic is taken for 10 days and stopped 2 days before the procedure so it does not kill the newly seeded flora.
Have you misunderstood your Dr's instruction?
Taking meds directly after an FMT has never been mentioned here by any other poster.

[roy]

I just checked your older posts.
it seems that your trying to eradicate asymptomatic c.diff.
You have had stomach problems for a long while and a test has just happened to detect you are colonised with c.diff but toxin test was negative.
You have never had the classic c.diff D.
Trying to eradicate asymptomatic c.diff is not recommended, maybe almost impossible, and doing so can cause harm.
Having a positive test but no toxins is NOT c.diff as a disease!!!
It's simply another inhabitant of a normal gut flora.
There's around 27 strains of c.diff, half of them are totally harmless.
But they all cause a positive test result.
You need to see a specialist who knows that c.diff without toxins is not something to treat.
Tests for any bacteria are not an indication of a disease.
Only symptoms say if a bacteria is causing illness.
We all carry bacteria that can freak us out if we knew it was there!
E.coli, salmonella, staph, strep and even the bacteria that causes meningitis are all common inhabitants of the body and cause no harm.

[okaylo]

Roy, Amy, Beth: I had my first FMT in June 2016. I was on Dificid up until 36 hours before the procedure as instructed by the hospital's protocol. No meds were taken after the procedure. I was not feeling well for weeks and retested a month or so later. My test was positive for the antigen but no toxins, yet I felt like I was being poisoned from the inside out (nausea, abdominal pain, overall sick feeling, burning, loose stools). My doctor told me I could try the Dificid again if I wanted to and see if it brought any relief. When I reacted poorly to the Dificid post FMT, my doctor had me reduce the dose to see if that helped and I still felt bad. My doctor said that perhaps I was now just a carrier of cdiff so we stopped the meds for over a month to see if things would get better. I still was not feeling well at this point so I retested. This time the test came back POSITIVE for both the antigen and TOXIN A & B. My doctor said obviously stopping the meds was not helpful as the cdiff continued to grow/progress. The only time I had watery diarrhea as the "classic case / indicator" of cdiff was the very first time I tested positive for cdiff in 2014. From posts on here, I have read that other people test positive for cdiff w/toxin production and do not have watery diarrhea. I asked my doctor how I was testing positive without watery diarrhea as the indicator and he said that my cdiff was probably at a lower volume than before and although I was feeling so bad, it wasn't causing the full blown watery diarrhea. I told him that I was fearful that if I just solely took the Dificid that I would end up relapsing down the road whether that be a few weeks or months from now. He told me that is what he predicted would happen and said we should try doing a second FMT.

I have read that many people deal with stubborn cases of cdiff that are not cured with several rounds of meds or even a single FMT and some people require a second FMT to get well. My most recent test was positive for cdiff WITH toxins. My test reads Clostridium Difficile Toxin/GDH w/ REFL to PCR. RESULTS: GDH ANTIGEN: DETECTED. TOXIN A & B: DETECTED. TOXIGENIC CDIFFICILE DETECTED. I am a bit confused as to how that you say it is not considered a positive test, Roy. Cdiff w/ toxins is something to treat, maybe treatment should've been held off on given the prior test in which just the antigen showed up, but it is clear now that the toxins are detected. I realize that I have other issues that are coming into play but none of them have ever made me feel as sick as Cdiff. I acknowledge that I had issues before cdiff ever developed but this is something that I picked up along the way that needs to be addressed. My SIBO cannot be treated as it will increase my risk of cdiff again and I have been told my an infectious disease specialist that I will have to just deal with the SIBO and accompanying IBS. Hope this makes more sense...