Just Tired and Lost

[TowerL]

I have posted before but I am on round two of treatment. Have one more day of Dificid after today and then begin the long wait to see what happens. My bowel movements are still yellow and Im going about twice a day. Theres still mucus and I can't eat alot of foods.

But I'm already over it. The downstairs toilet which was the only one I was using is clogged. I think my yeast infection is back as I am itching again. I have to be extra careful about catching any little bug when I'm at work and there are lots of sick people around. Financially it's taking a toll on me and I'm having to dip into savings which took me years to build.

I just watched my mom cry in fear that my brother might be infected.

I just watched her cry because she is over the situation and is afraid were not doing enough to avoid contamination.

I live with both of them and have no where else to go.

I go to work because I can't afford not to, with a bottle of bleach, gloves, and supplies for when I have to go to the bathroom or to avoid catching other illnesses.

If this medication does not work I don't know how I am going to continue. I can't do this to my family anymore. I wish they had a center where I could go to avoid exposing my family until it was safe.

C diff has destroyed my life. Two months ago I was an energetic 28 year old who with a great job, great friends, great boyfriend and even her own place. I could do high intensity excercises, eat almost anything and go almost anywhere. Today I barely go out to avoid getting sick, I had to move out after the breakup of my relationship, I don't know how long I'll keep my job, I can't eat the foods I used to love and I don't even know if this horrible illness is gone.

[georgina]

Oh , TowerL you poor thing,i know how you are feeling , belive me , i'm right there with you.It's been 4 weeks since my FMT and i'm still miserable, still can't get relief.This monster has robed me 9 months of my life and it seems it wants to stay with me more.I hope that this round of Difficid will do the trick for you and you'll be cured.Your family however should not be that scared of you.I am living with my husband and we share the same bathroom , the same bed and he did not get it although i was a bit scared last week because he had to take a single dose of Ciprofloxacin because he came in contact with a patient with a severe case of meningitis (we both work in heathcare).And i had to stay with my parents for 2 weeks and they did not get CDiff either.Both my mom and my husband were tested for CDiff and they were clear.You are not exposing anybody as long as you are having good hygiene.Difficid is a great drug , it has a high cure rate and it cured several posters on this site, so....fingers crossed! I'll keep you in my prayers.

[NanciT]

TowerL

I am so sorry you are feeling so low. Please know this WILL pass. It's very hard while in the middle of treatment to see the light at the end of the tunnel. We are here to tell you there is one. I also know when you are feeling so bad all the time and each and every effect this illness has on your life...it becomes overwhelming. It's tough not to look back to a few months ago and then see yourself now...but just know you are working through it. You will beat this illness, it takes time. Some are treated once and move on, others go through what you are experiencing and I think that what this site is all about. You can see many of us here that are here to support you and let you know you will get through this. Maybe try and find some things that will help you feel better. Some examples....watch a funny movie at home, relaxation music( this helped me alot) a good book, a nice brisk walk. I found walking helped the GI pain I had with Dificid. As far as eating, my "normal" changed. It's taken some time but I am slowly getting back into the foods I use to eat. It will happen.
Give it some time...let the Dificid work and your body recover. Be good to yourself right now....
I hope you are feeling better very soon!
NanciT

[TowerL]

Thank you Nancy and Georgina, your words and support mean a lot. I have actually started reading the responses on this site to my mom, as she has had a hard time with it as well. She was my caregiver when I was so sick with the D and at the hospital and dealt with her own fears after being prescribed antibiotics for bronchitis while I was sick.

I am hopeful that we are all 100% this new year and that more is done to both prevent and treat this aweful disease. My prayers for you and everyone dealing with C diff and its effects.

[amylong]

I know how you feel .. I have also had cdiff come back 3 times in one year. I lost my job ( was to sick to work) Cancelled vacation and other life plans. I have been so upset and unhappy from this. I am scared it will never go away. Reading posts from this group I know it will go away. It just takes time. There are people on here who have got better. I too share a bathroom with other family members my mom father and sister. No one has got sick. I lost my boyfriend because I was so upset from this all the time and he was scared I would infect him. He also thought I was over reacting to this. I have a big problem with people thinking this is nothing and I shouldn't think about it. You are not alone and I am suffering too. Its such an isolating feeling having this. I also find many doctors do not know much about this. Think positive difficid is a very good medicine and usually has great results. I am praying that it works for you this time around.

[beth22]

Dificid has helped many and hopefully it will help you as well. Some people do not feel well when they are on it. It can be hard on the GI system too. Hang in there. I'm another one that shared the same bathroom with my husband and we slept in the same bed and I did his and my laundry together. He never got sick and was my first donor for my FMT.

[TowerL]

Thank you Beth. We are trying to keep laundry separate and bleaching the machine after each time I use it. It's nice to know other people have continued with their lives and their family has not become infected. But I know we'll keep bleaching like crazy. Thankfully my body started adjusting to the Dificid by the end of the week. I did get a hive but since it went away things on the medication have been easier (thankfully constipation stopped).

Amy, I am so sorry. I also agree doctors don't always understand. I already worry going to my PCP on Tuesday. I know when I mention the yeast infection and the fact that I am late on my monthly cycle he isn't going to be sure what to do. I also fear I might be tested quickly for a negative PCR, which I'm not sure about.

The toughest part of this disease (besides the physical) is when people don't understand that you are not over reacting. That it is really that bad. I feel your pain seeing someone who you think will be your greatest supporter turn out not to be. I've been told better to find out now who they really are but honestly I would have rather found out when I was healthy and not when I'm going through this. It makes dealing with the illness harder. I am praying you get better and that it never comes back.

Thank you everyone for your support. I am still up and down emotionally (cried all day yesterday, angry all day Friday) but am hoping for an early Christmas present of no C diff.

[susant]

Sweet girl!!! I've had this thing once last year and now twice this year. Nobody has gotten it in my family and I can tell you they don't go overboard with cleaning. I do but they don't. I'm struggling too. I have to take xanax a lot just to be normal. I've threatened suicide (not that I would do it... I'm afraid of dying) but being that we are both 28 years old we will make it. I'm terrified I'm not gonna lie. I just had a tooth pulled and possibly need a root canal on another. I never used to have teeth issues but after pregnancy and cdiff my mouth hates me. We will make it. I'm here whenever you want to vent.

[Lisa33]

I am also here to tell you that the chances of passing it on to your family members is slim to none if you are practicing good hygiene and bleaching the toilet area. Neither my husband or 3 year old at the time got it, and they both had to take antibiotics several times and shortly after I had active c-diff. I don't think that I ever read on here once that a family member caught it.

All of your feelings of anxiety, being fed up and just wanting to give up are all very common when you are going through it. But as the others said, you have to be strong and hopeful because it WILL pass. There are so many of us that are living proof that there is an end to this hell, and you will get on with your life again. For some it can take longer than others. I agree with Nancy and try to find something that can lift your spirits and get your mind away from the constant anxiety and depression that c-diff causes. A funny movie is always a good way to boost my spirits.

Dificid has a high cure rate, so hopefully the c-diff is gone for good now. We all understand how you feel.

Hugs,
Lisa

[zinnia1]

everyone has shared such good information here- this is the most helpful site! I won't add on much, but just thought I would share that I got c diff 2 weeks before my daughter got married! 4O people at my house for rehearsal dinner, 120 next day. I couldn't eat (or wouldn't risk eating ) anything and the bridesmaids were bringing my pedioltye and peanut butter sandwiches! My neighbor kept making me white rice. These was one bathroom at the site and my daughter was married out in a field. OMG. I saw my doctor's partner the morning before the hordes of folks descended on my house as I was a nervous wreck and he was like "we need a game plan to get you thru!" I truly thought I was going to maybe faint walking down the aisle and it was mind over matter big time. I had very rapidly lost 15 lbs.
But, once vanco was out of my system I then went thru a long time of IBS trials and tribulations and I am getting stronger all the time. My point is I thought that maybe I would just curl up and fade away, that there was no hope. But you will get better. I promise.

[TowerL]

Thank you! Lisa I took the suggestion and watched a funny movie and it helped. It distracted me for a bit. Going to work also helps although it has its physical issues for me. Tommorrow is my doctors appointment and my last pill of Dificid has been taken. I am not sure if my doctor will test me again considering I have formed stools (the lab will test on formed stools here). My bowel movements feel better but I know they are still not normal. So far my brother is fine although my mom has had some tummy issues through out (she also was on antibiotics recently but tested negative before).

Susan I hope you are feeling better from your tooth and stomach. I have also told my family a few times they would be better off without me and that I don't have much of a life. But the forum reminds me I'm not alone. I will admit I forget that sometimes.

Zinnia not sure how you managed the wedding, I have enough trouble managing my day to day sometimes even now that I no longer have the D.

[Lisa33]

I'm glad you watched a funny movie. Laughter is the best remedy!

I just want to give you a reminder that formed stools is a great thing! I think that is positive and an improvement. I don't think any of us know what normal stools are after c-diff, so don't get too hung up on getting back to where you were before c-diff in the bowl. :-) My BMs never went back to how they were before c-diff and I'm a year out. I think many of us have "a new normal." We are all guilty of examining what's in the bowl, but you have to try not to do it. The inconsistency of recovery will just drive you crazy.

I wish you continued improvement. Your BMs feeling better is a step in the right direction. Sometimes it can feel like baby steps, but you are moving in the right direction. Keep your chin up and try to enjoy the positives a little bit more. You will get better.

Lisa

[Bobbie]

You share your losses and fears with most of the posters on this site. I first developed c diff in 1993 at 52. I am now almost 75 and had two more bouts. Don't panic - extenuating circumstances. C diff ruined my youngest son's high school graduation and my oldest son's wedding for me.. It has stolen many precious moments from my life. BUT I am alive and probably in better shape than others my age and I still have good times.

No one else in my family developed c diff. Sit down with your family's and discus hygiene info with them.If they-are involved, they will feel better. Hand washing is the most important thing.See CDI - HYgiene.

You will get well- honest.Rely on us for support.We know how you feel. As Lisa said,laugh all you can.

[pes22]

Very sorry you are going through this! I can certainly relate to the life changes that this beast brings! I am crossing my fingers for you that the difficid will work and you can get back to your life.

When I first contracted Cdiff, I did not know for a few days and just thought I had a bad case of diarrhea. I had both of my boys, my parents, and my husband using the same bathroom and they all have been fine.

It is a rough thing to go through, it seems like I take 1 step forward then go back. Now going back to 4x a day on the vanc for a UTI with Bactrim. I was almost tapered down to 1 a day. Frustrating!

Anyway, it is nice to find joy in other things. I watched a funny Christmas movie with my husband the other night and it did help to take my mind off the Cdiff for a bit. We will get through this! Take care

-Heather

[justme]

TowerL: I can't add much to what all the others have said. Like Bobbie, I am a "mature" lady of advanced age and it has been nearly 3 years since I got the "beast". I have some serious underlying health issues, but dealing with C. Diff had the most impact on my life. I very rarely cry (it just isn't in my nature), but I shed a lot of tears dealing with this condition. I didn't relapse, but have had quite a bit of trouble with IBS from various things unfortunately including probiotics of any kind. The healing process has been a long road (mostly due to age, etc.). Most people heal pretty quickly and can return to their regular lives and diets. Others have a rougher time. You are young, so odds are in your favor. If your relationship broke up because of this, he wasn't worth it!! Consider yourself lucky that you found out now. I coped through my association with the beast by distracting myself - reading, watching movies, and mild exercises. A heating pad became my buddy. My husband did not get the bug (it is NOT easy for family members to get). As long as you wash your hands thoroughly after using the bathroom, they are not going to be "contaminated". If you are worried about soiling your underwear, wear a disposable pad and/or wash your underthings separately from the rest of the family. They are overreacting. This is NOT a virus and cannot be spread through the air. You WILL heal. It will just take time. I hope you eventually find a great boyfriend who loves you unconditionally.
Aloha,
Anne