Need your encouragement. Can't stop crying. Please help,.

[Dianlynn]

My Cdiff friends, I am 24 days past my diagnosis and on a vanco taper. Some of you know I have a wonderful doctor (Dr. Kelly) who told me if I regress we go right to a FT. I have so much to be thankful for and really try.

Today I just cried much of the day. Watching others eat foods I can't eat at work, feeling crappy from no sleep last night trying to get through the day,awful pain in my left side from God knows what, maybe the oat bread, so tired of not eating real food, not being able to cook good food for my husband, afraid to eat anything new, constantly washing, constantly vigilant, fearing the BMs. I wonder if I'll live through this. I wonder if I even want to live through this. I have a counselor. I have sleep meds now that sort of work.

I just can't stop crying today. I'm afraid to touch things and then eat. I'm afraid of not being able to work. I'm afraid of telling people what I have. I'm so lonely and scared that this is going to never, ever go away. I feel like my life ended. This isn't living. This can't be the way it is going to be, is it?

I saw my own GP doctor but she gave me nothing besides valium. I've called prayer lines and prayed. I'm just so scared and so lonely and I need to hear it gets better. Did you suffer depression too? Did you want to give up? How did you get through it?

I hate reading the horror stories here. I try to read the success stories. But tell me, please, tell me this goes away. I don't care if I'm perfect. I just want my life back. I want to eat. I want to go to a restaurant. I want to sleep and not be afraid all the time...............

I know this depression is part of the Cdiff. It's just so darn hard.

Please tell me how you got through it. Please tell me you got better. Please, help.

[NikaNik]

Hi, Dianlynn,

First - I am so sorry you're dealing with this. C diff sucks. Period. Hate it! BUT rest assured, it is not forever.

Last year I could've written your post (actually, if you look at my post history my early posts are SO similar). The desperation, the wanting my life back, the wondering when, exactly I ingested the bacteria (likely during a hospital visit several months before taking an antibiotic for a sinus infection), the anger at this bacteria that no one else seemed to know about or understand, the being jealous of everyone for eating regular foods I loved while I barely had an appetite, trying to work two jobs (one as a magazine editor with a 2 hour bus commute to NYC on a bus that didn't always have a bathroom and the other as a wedding photographer with 12-13 hour days and the anxiety that went with that) and, most of all, wanting to hit rewind and get my old life back.

Everyone on this site was so incredibly supportive! No matter how fearful I became, they told me to just keep hanging on, that there would be a light at the end of the tunnel and that I would get better. Still, I worried I would have it forever.

They were right! Thankfully, I've been c diff free for almost a year and a half, feeling great and eating everything in site (I lost 12 pounds with c diff and went down to 99 pounds but have gained back all the weight). I eat everything as I did before and only have very minor IBS every now and then, usually stress or hormone related (very fortunate). Yes, I worry what will happen if I ever need an antibiotic in the future. But I am so, so grateful and didn't want to miss the chance to tell you that you too will get on the other side of this! You too will enjoy life and food once again. Hang in there and take one day at a time, one hour or even one moment at a time if you have to.

In the meantime, you've found an amazing place for support with plenty of success stories (and don't forget - many of those success stories are off living life and not posting here). : )

Hugs!
Nikki

[overit]

DianeLynn,

I'm 6 months post diagnosis and 2 months post FMT and I can tell you I have felt every thing you describe. I spent the first 4 months crying every single day and feeling hopeless but I'm starting to turn the corner. I now have "good" days where I'm not in tears or worrying 24 hours a day so little by little it's getting better. I'm so glad you posted this because it validates all of the feelings I had (have) as well. No one but the people in this group understand what we go through. Hang in there! It will get better!

[beth22]

I have felt all of what you posted, including anger at the nursing facility where my mom was a patient and where she and I both got sick. You are in good hands with Dr. Kelly. If you need the FMT, so be it. I have had more than one and really, it is not any different than getting a colonoscopy. You are asleep for the whole thing. You will get better.

[Ashley20]

Hi DianeLynn, i could have written your post too! When i first got diagnosed i was 4 months postpartum. I had never heard of cdiff before and i spent so much time googling and researching that it made my anxiety grow to the point of not sleeping anything for 2 weeks. I spent my whole day bleaching and crying. After my treatment with flagyl and trying hard to stay positive i got the news that my baby tested positive for cdiff too...both toxins A and B :/ i went into a deep depression, i lost about 50 lbs in 2 months...i was so afraid to eat and i spent most of my day washing my hands raw and bleaching my whole house. I truly believed i would never get better and even if i did.. i was too scared of getting reinfected by my baby. Changing diapers and bathing him became unbearable but i didn't want anyone else doing it either...i was exhausted. I did get better, both physically and emotionally :) i started taking Zoloft and ativan in December and slowly i started trusting and letting go. I now change and bathe my baby with no fear. I dont bleach anything anymore either. I understand how hard it is to be so paralyzed with fear and just wanting everything to go back like before. Please feel free to PM me whenever you want and ask me anything or just to talk. .take care :)

[Lisa33]

Dianlynn - This does go away and things WILL get better. Although it may not feel that way now, you WILL beat this and get over c-diff once and for all. It may take time to be able to eat normally again and for your gut and colon to heal, but you will get there. Try to focus on the success stories posted. Even the most stubborn of cases are cured. There are many of us on here that can tell you that you will get your life back. I'm 20 months post c-diff. I was lucky to have relapsed just once and then cured by vanco. Recovery was tough, especially early recovery. But, I got through it. I even got through a z-pac recently without a relapse. You WILL get better!

Lisa

[NanciT]

Dianlynn

There are SO MANY of us here on this site that could have written your words. There is a Gut/depression/emotion relationship. I hope one day we see that as part of the description of CDIFF. I have had 3 GI's through this, I can honestly say only my current one has any sense of this. I have never cried so much in my life, it was terrible.
I am so very happy you have Dr Kelly taking care of you, finding a GI that knows CDIFF is very difficult and some suffer for a long time before getting to the right doctor. I believe that will help you overcome this , it is a big deal having the right physician.
You are not alone, we are here for you. Give it time to work, you WILL get well
Sending positive thoughts and prayers your way
NanciT

[Dianlynn]

I can't thank you enough. I needed so much to hear your words. i read them over and over and over again.

I printed them out.

I love you guys.....really.........I just love you all for your kindness and care. You understand how it feels to be so sick and so scared and so alone.

I have stopped planning to kill myself.

Thank you!!!!!

[NanciT]

A few things to know.....

Get an emergency number from your counselor to call if necessary

There is a suicide crisis and prevention phone that is fantastic, its a kind voice on the other end that will talk with you if you feel desperate

So many reach this point, it's that GI/Brain connection that effects nearly all of us with CDIFF, I see it in people who have had it for a week, month, year, nearly everyone.

The hopeless feeling is where it leads us, just know you will get through this. You will move on with your life and family. One thing I can say, I never appreciated the good days I have until now.

Be good to yourself. Treat yourself with something you like. You have been though alot, something only those of us who have been there can truly understand.
NanciT

[okaylo]

Thank you to everyone who has posted on this. I can relate to and have lived through many things that each of you have said. After being on this site for a few short weeks, I feel like I have found some truly kind souls who know exactly what I'm feeling. I'm having a moment of clarity as I type this and am grateful for everything that each of you have said. Good luck to everyone.

[Acres]

There were times when I prayed for god to take me....There were moments I thought my life was done. I cried an ocean of tears...
I think sea levels are up because of me....

The illness, the anxiety, fear, pain, scared to go anywhere and the constant worrying about eating...
We must fight this monster, the depression and the fear....

I will lose myself listening to music or watching movies - Things that make me laugh...My wife bought me the old Odd Couple tv series on DVD which I watch whenever my anxiety goes into overdrive....

My experience continues to be a rollercoaster in recovery. There was a time I thought I would never feel better, but I am recovering...Improvement comes slowly with some bumps in the road, but you will get well....

The people here have been a godsend to me and I'm sure many others... There is no shortage of wisdom and compassion on this site. That in itself is uplifting and raises my spirits when I come here to read, ask a question or vent....
Scott

[Jill79]

I may only be just wrapping up my first round of meds and dealing with C. Diff for a month but I can totally relate. I feel extremely guilty having a pity party after reading all of the brave stories on here of those who suffer more and for a much longer period of time, but I felt / feel that my life has been turned upside down.

Ironically up until a week or so ago, I couldn't cry. I felt lost and numb after the first two weeks with my anxiety and panic controlling my every thought. Then when I finally could, I started having cry fests here and there but felt a little better afterwards like it was something I needed to do. I absolutely love this skit by Dane Cook about crying, I laugh like heck every time - https://www.youtube.com/watch?v=4uTFBKiE18Y

I too am jealous of what others can eat, especially when my family orders out so often. I'm not sure how much more of the BRAT or BART diet I can stomach, pun intended. :) I'm also scared to introduce different foods but I have gained some of my appetite back and just pick a small portion of something new to try every now and then and see how it goes.

My hands feel like that of a 90 year old with all the hand washing, cleaning and not being able to use most lotions because they contain some form of alcohol while I'm on this poison, Flagyl. (Finally found some baby scented 100% petroleum jelly that really helps.) I end up washing my hands after touching pretty much anything. I'm angry that I just can't cuddle up and pet my kitties before falling asleep, instead I'm off to wash my hands and moisturize them for the umpteenth time that day. My mother is starting to jokingly call me Howie Mandel. :) I've had an anxiety / panic disorder for years well controlled with medication and weekly counseling but C. Diff escalated it to a whole new level where I ended up in the ER three times finally asking to speak with a crisis counselor to be admitted but was denied since I wasn't a harm to myself. Depression wasn't far behind.

I'm afraid about work. I've been on a leave of absence with short term disability since this started and plan to return in a few weeks and boy do I want to! I'm just terrified that I'll relapse after finishing this round and will have to start from square one again. Other than my Human Resource Coordinator that I've been working with to hold my job, only one of my best friends who works in the building in a different office knows the nature of my illness at work. I have no plans to disclose it to any other coworkers when I'm well enough to return and they are not at any risk. I don't need the added anxiety of the stigma of what goes along with C. Diff. I don't want people to feel awkward working close to me or using the restroom after I have.

I've been slowly crawling out from beneath the rock of depression, guilt and feeling like a burden. I agree with Acres that you need to find other things to occupy your mind or the hamster wheel of "what ifs" will just take over. Do you have any hobbies? I'm an amateur hobbyist photographer (also with a few weddings under my belt, yes I read your post Nikki :) ) and have found that puttering around with some new or older photos that have been sitting around on my computer really helps keep my mind going and then I feel I've accomplished something. Up until recently I couldn't even enjoy watching a movie or TV because the hamster wheel would start spinning and I'd forget what I was watching. Cleaning, sudoko, crossword puzzles, mindless phone apps or computer games, even replying to you right now is keeping the demons at bay and helping me. I also find that thinking about people dealing with worse diagnoses than I, watching what I like to call self-help shows like Intervention and Hoarders makes me put things in a better perspective because I don't have a terminal illness, I'm not an addict and my house is immaculate compared to the hoarders I've seen! haha :)

Stick with the counseling, find something, anything that you enjoy that you are well enough to do. Draw, paint, knit, even coloring books have been said to be therapeutic. Here is a fun one:

https://www.amazon.com/dp/1522864741/re ... KSK6ARXXGB

Lastly, enjoy time with your husband. I'm not sure where I would be without my significant other or my mother. After being irrationally angry and snapping at both of them the past few weeks in the despair of C. Diff and depression, I've apologized profusely and try to enjoy as many happy moments with them as possible.

It will get better. :)

[Dianlynn]

Oh my gosh, I love you guys. Thank you. Thank you. Thank you!!!!

Reading your posts makes me feel normal. I see you feel what I feel and know exactly what I am going through. Even though we are different, we all share the same fight with a devil of a monster. Wow. Normal. I said that word?

I realize, now, for the first time, I actually believe this is going to get better in time.

I realize I may not die from this even though it really felt like it.

I realize the first weeks and maybe month or two are the worst. You just have to get through it. Day by day. Maybe moment by moment sometimes. Just get through. Just find something else to put your mind on. Just get through one day at a time.

I realize some days are horrible and some days are going to be better but the trend will be upward. But the measure must be in weeks or months not days.

I realize depression, anxiety and despair are commonalities we all battle. It's not me. It's not my lack of faith or effort. It is the frigging disease. That's what's playing with my head. And in time, this can get better.

I realize you are here for me and we are here for each other. We aren't alone. We have each other to lean on during those days when we would pull the trigger on the gun to make it end if we had one.

I realize this is a process. I need to be more patient.

I realize most of the people who get better aren't posting here any more. We don't see all the great stories because they have moved on. The horror stories are not the norm. Most people get better.

I realize there are some amazing cures right on the horizon. We could be seeing a few pills available to cure us or at least 90% of us in the next 2 to 5 years (and that is a quote I got today from one of the women running the Seres study).

She said "The cure rate for our normal FMT is 87% for a first dose (30 capsules) and when we account for people who relapse and are re-treated with a second dose, the cure rate goes up to over 90%. I am not exactly sure what the cure rates for the Seres drug SER-109 are but I know they are comparable."

Ha!!! And there are lots of other studies besides that one doing great work and making strides. And that's for people who relapsed on Vanco at lesat 3 X !!! Yeah! Yeah! Yeah!!!!

And today, ladies and gentlemen, I had a little coffee. After almost a month, I did something normal. It was 3 tablespoons in almond milk, but who cares. It was coffee. It was caffeine and it was darn good.

I'm drinking a bottle of Kefir a day and I swear that is doing amazing things for my gut. Dr. Kelly may be right. It could be as good as vanco.

Thank you for being there when I was at my lowest with no sleep, no hope, and no one who understood.

Love you guys. Hang in there. We need each other.

Matthew 25:36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'

That's you. You visited me when I was in prison. You are God's hands to the wounded and doing His will. Be blessed today.

Dianelynn

[Bobbie]

Glad you are doing better and happy the site is helping. Misery does love company and we understand what we all are going through - or have gone through.

[zinnia1]

Hi Dianlynn- I am glad you are feeling better. It is truly baby steps and sometimes you will just wonder what the heck works. Just know that you do move a head. I had c diff last year during my daughter's wedding..... I still felt awful right after I finished vanco (which I think contributed to my gut still feeling upset) and took another round w/out getting test results back (they were ultimately negative...) cause of timing and wedding and Memorial Day and 120 people showing up at my house. I had lost 15 lbs and was drinking pedialyte and eating peanut butter and jelly sandwiches through out the event! As summer wore on and I had tested negative (and I asked to be retested several times, which made my GI crazy, but she obliged) I stayed on a pretty bland diet just cause I had to travel so much and there was a lot going on (my mother in law passed away a week after wedding..) For a long time it felt like my intestines were just so raw and inflamed. I just didn't feel comfortable testing my diet so made sandwiches to bring w/me etc. I must admit I ate whatever "stayed" in my stomach and helped put weight on- raspberry sorbet was my friend! I took some probiotics, but anything too intense made me feel worse and Kefir didn't agree either. By 4 mos out I realized I wasn't being so cautious and by 6 mos I was being pretty cavalier. I had a routine colonoscopy the spring and all looked good. I did a number on myself by eating way too much risky stuff afterwards and suffered of r a few days, but I was unwise!
I suffered severe anxiety and depression. I was so scared and so frail and had so much life on my plate to deal with and it was overwhelming to manage that. No one knows about or wants to talk abut cdiff. It is like having migraines (which I have) that no one can see so they don't get it. But no one wants to discuss bathroom issues. And to be so unsure of what your bowels are going to do is awful. I was doing a lot of traveling and it is awful to be in those situations. You just want to be home and safe.
Pepto bismol helped, antispasmodics, sleep aid, and an occasional anti anxiety pill. My gut would wake me up every morning at the crack of dawn so I would be in bathroom for a few hours and then rest of day wiped out. But a year later I have gained the weight back and eat what I want. But I will always feel like a survivor slightly anxious about ever going thru this again. My doc said once it is done it is done. Fingers crossed!