Exhausted of treatment.

[Zapper]

First let's start with the facts.
I am a 27 year old female who works in hospitals and LTC facilities. Generally healthy with a little trouble with IBS (nothing that couldn't be handled with diet and Imodium).
I am prone to UTI's and got one overnight late October. Prescribed 5 days of Cipro and about 1 week after I started feeling the symptoms. I thought it was the stomach flu on day 1. Day 2 I never left the bathroom. Day 3 I was exhausted and starved and went to the urgent care. I was quickly dismissed as a stomach flu and sent home with prescription strength anti-diarrheal (HUGE no no). Anyway, day 4 and 5 I was feeling like I was dying and my husband took me to the hospital. I was severely dehydrated and my body shutting down. I was admitted and received my diagnosis of c diff. I got myself an Infectious disease specialist and a gastroenterologist and saw them weekly. I was placed on flagyl and only made it 4 days (and 12 lbs) and begged for another treatment. I was switched to vanco and was grateful. I finally felt like I could eat and leave the house. After my 2 week vanco course I tested negative twice for c diff but still had raging symptoms and weight loss. (Side Note: I am 5'7 and 115 to begin with so at this point I am very underweight). My docs both felt a colonoscopy would be necessary to see if there was something else causing the symptoms. Colon prep was a breeze compared to c diff. I had my colonoscopy on Christmas Eve and felt pretty good. Christmas Day I was back in the hospital in ventricular tachycardia and dehydration. I wanted to die. I would never wish that feeling on anyone ever. I was given another stool sample and positive for c diff again. I was in isolation and after 2 days stable enough to go home and continue treatment. Now I just finished my 6 week vanco course yesterday and absolutely terrified. Every pain and bowel movement I want to cry.. Not because I am in pain but purely fear of relapse. It's all I can think about.
It's been very helpful to read the boards and other people's experiences. But I can't get myself out of this anxiety/fear/depression. I constantly bleach things over and over. I'm afraid to touch anything outside of my home. I find myself staring into space at work thinking about the next time I relapse. My doctors are never concerned.. Keep telling me I am young and should be able to fight it. "Should".
I asked about probiotics but my ID does not believe it to be necessary. I can't really alter my diet much since I basically have been confined to eating bland chicken, rice, and bananas. I swear I will never want to eat another banana ever again.
My husband doesn't understand. Says that I need to stop being so negative. I can't help it. Fear is a part of my life now. And don't get me started on the fear or needing to take antibiotics again! Eek.
How did you guys mentally get through this? Anyone else have trouble with post c diff depression/anxiety/OCD?
I appreciate any responses...

[Bobbie]

STANDARD INTRODUCTION:

Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.

Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.

No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.

Again, welcome. Remember, the odds are in your favor. Again, please read the posting rules in the first foum. (End of letter.)

We all are terrified of c diff. You are not alone. Have you tried counseling? You might ask your doc for anti anxiety or anti depressant meds for a awhile to help you get through the worst of this. Remember,these meds are addictive.

Exercise helps many plus doing things you enjoy - reading.writing, going to movies, etc.

Let us know how you are doing. You will be OK. It is common to have an increase in anxiety at the end of treatment. We understand.

[Lisa33]

Zapper - Your story mimics many of ours on this board. We all understand your fears, anxiety and depression from this illness. If the feelings are too much to handle, then I agree with Bobbie, maybe seeing a therapist may help. The one thing that really heals the anxiety level is time. With each passing week, you will continue to heal and improve physically and mentally. The longer you go in recovery, the least likely of a relapse, hence the fears start to diminish. I can't say that the anxiety will ever completely go away, but you will start to not worry as much about weird BMs, every tummy grumble, etc. The fear of antibiotics is probably the one anxiety that has stayed with me. I am 15 months out now, and have faced that fear twice with what could have been bacterial infections. I actually am still sick from horrible tonsilitis with fever, etc. I was convinced it was bacterial, but it turned out to be viral to my surprise. I haven't been this sick in a very long time. We just have to continue to remind ourselves that 90% of the time, illnesses are viral. All we can do is take one day at a time. Anxiety is worrying about what COULD happen. Try to live in the moment because the majority of times what could happen doesn't happen, and we have worried ourselves sick for no reason.

I know your doctor said not to take probiotics, but based on my experience with them, I do feel like they have helped. I felt like Florastor helped to bulk up my stools after c-diff. I also think that Kefir is a great probiotic drink with benefits as well. I feel that the probiotics help with PI-IBS as well. I also take VSL-3. That is just my opinion.

I wish you continued improvement. There is a lot of great info and support on this site to get you through this difficult time. Reading through the posts, you will see that you are not alone and what you are experiencing is quite normal for having gone through c diff.

Lisa

[NanciT]

Zapper

Both Bobbie and Lisa have given you great information. The fear you speak about is so common with CDIFF, it often takes us to the "brink" of life and then we slowly get better. But as we recover, there can be days of IBS, BM's can be all over the place, pain, nausea, and the fear returns.
I am also a healthcare provider and honestly had NO IDEA what this illness was really about until it hit me.
I don't believe anyone can really know until you go through it, including all 3 GI's I have had in the past. That is what makes this board so great, we all understand.
My last 2 Gi's also told me there was no need for any probiotics post CDIFF. Right on the bottle of VSL#3 it states it is for IBS, which I continue to have. I have continued with it and believe it helps. Might be something to consider.
Many go through the fear, and like Lisa has said, it can continue if you get ill and require antibiotics. I am 6 weeks out after taking Keflex for a UTI. I had been 1 year Post CDIFF and I still have the fear, but as time passes I don't think of it as much.
Time will get you through this but do know what you are going through is very normal and we are all here for support.
NanciT

[tessa63]

Hi,

I had talked to an ID doctor and he said PTSD is very real after C diff. I took a 1/2 a klonopin at night to calm me down when my tummy was rumbling. I only used it when my anxiety and fear were going to prevent me from sleeping and it helped a lot. This is all very normal and the obsession with C diff and relapsing is much worse in the early recovery days. It is so hard for family members to understand what you are going through and the brain-gut connection is a real thing that contributes to the depression and anxiety. I am in my 8th week post Dificid now (failed flagyl and vanco) am feeling much calmer. Last week the IBS was a little rough so I think I did take the klonopin a night or two, but it really helped me get through the rough parts. Yes these drugs are addictive but if you use them in clutch time they are lifesavers. I pray that Vanco is the last drug you will need and that with each week you will feel better, unfortunately the first week off of meds are the hardest and doctors are not always the best resources as they disagree on the management of it all. You have to know that you will eventually get better and that reading the stories on this site helps so much. Everyone is different, but empowering yourself with information helps you guide your own care. If by chance the Vanco doesn't work (I hate saying that) I would push for trying Dificid/dificid taper or an FMT at this point. You have been through so much already!

[Dukiemom]

I am so sorry that you are experiencing both this disease and the associate feelings. I believe that feeling a sense of control over your situation is one way some of us started to feel less anxious. In your case this might mean knowing that if you relapse your long vanco course the next action would be to go on Dificid which was a cure for so many on this board with multiple relapses. You can decide that your limited food intake,which is best for you now, is not your forever diet and circle a date on your calendar to add one new, mild food every three days or so. There is little downside to taking probiotics, so you can choose to add one that you find recommended by many doctors of folks on this site. Your fear is proof that you are taking your situation seriously and that is a good thing because so many doctors misunderstand, or are still figuring out, the best course of action for their patients, so you have to be your own advocate. Spend time on this site. The veterans here are wonderful in their knowledge and support. And as far as your weight, I got down to 90 lbs and I was still relapsing. Today I hit 96 and feel like I finished a marathon I'm so happy. Prayers and hugs and keep us posted.

[notheidi]

Zapper!!! I am so sorry you're going through this. I too work in nursing homes! I live with the fear every day. It DOES get better after a while.

Don't be afraid to take antidepressants or other medications if you need them. C diff is devastating to the gut, which holds a lot of serotonin receptors. Then on top of that, we get the PTSD, fear of relapse, and malnutrition due to malabsorption to boot.

Just keep putting one foot in front of the other. I just kind of had to keep redirecting myself to "What's happening right now? Have I been rediagnosed with c diff right now?" "No." "Well ok then!" I like the Socratic method. :P

[Bobbie]

Self talk can be helpful. I often dare myself to do things I don't want to do - like see a doc.

I, too, would be leery of working in a hospital or nursing home .

[Zapper]

I love my job but lately have felt the need to find a desk job and stop visiting these facilities. It's amazing I used all precautions and still ended up with c diff. My ID doc thinks I could have picked it up anywhere really but the likelihood is either the hospital or nursing home.
Add the stress of c diff with a career change = breakdown. For now, I've decided to wait it out until I know I am c diff free before even looking (nothing looks better than getting sick in your probationary period).
I am 3 days off antibiotics and feeling gurgles and temporary pains. I can deal with the c diff diharrea.. It's the dehydration that gets me all nervous. I drink the same amount if not more and end up hospitalized each time.
I am curious if the colonoscopy/endoscopy was the cause of my most recent relapse. I've seen on the boards people reporting relapses after the procedure.
My support circle is large but even though they support me, they don't have any idea of what this disease is. I have to explain over and over. I get a little irritated now we have the Internet at our disposal and they still don't look it up. Sigh.
I have lightened my eating as I seem to be less hungry right now (maybe it's stress driven). I am currently about 100 lbs. my husband made a remark a few days ago about my figure looking a little "sickly" and I wanted to punch him in the face but I had some self control. ;) But it's moments like that when my "rock" makes comments about things I can do absolutely nothing about right now. I'm hoping with time it can go back to how I was but obviously that can not be soon enough for the hubby!!

[Lisa33]

The colonoscopy could have definitely added to the recent relapse. I opted not to do one after reading some posts on this board of possibly relapsing from a colonoscopy. But, there's no point of thinking about that, as it's done and over with, and there's no definitive evidence that the colonoscopy caused your relapse. Just think forward and try to not dwell on if I did this or didn't do this. It will only add to your anxiety. Also, try to take one day at a time, and not make any drastic decisions about your job until you are feeling better. You are putting way too much on yourself, which is all causing you undo stress. I know it's all easier said than done, but try focusing on the present and don't be hard on yourself. Do whatever it takes to feel better today. Eat foods that you can tolerate and don't worry about the weight. As time goes on, you will feel better and better, and the weight gain will come. Nobody truly understands what you are going through other than people who have been through it. We all had family members or friends who just didn't get it. Don't let them get you down. Just focus on getting well and on yourself. You are doing everything right. Things will get better!

Lisa

[Zapper]

Well, I'm starting to feel very ill again.
All weekend it's been a slow progression back to diarrhea and stomach pain. I have a low grade fever for now so I am trying to push fluids. I don't want to see my doc until I know for sure it is C Diff.. The financial strain has been too much (200 out of pocket each visit).
I called out of work since I can't seem to make it out of the restroom let alone a 45 min drive. A part of me hopes this is anything else.. Stomach flu, food intolerance, anything.
Trying my best to stay positive but it is so very hard to do when actively sick.

[roy]

That sounds like a typical relapse.
Its not something to ignore and you should see a Dr right away.

[Zapper]

Update: diarrhea has stopped for now. It's been about 6 hours since my last bowel movement and I'm feeling much better. I also brought my fever down with Tylenol and pushing water. I have relaxed a bit as well emotionally. I don't believe a relapse would get better as both times I have relapsed before it got progressively worse.
Thank you for all your advise. I have to keep reminding myself to take each day as it comes..

[beth22]

See how you feel tomorrow. As you say, a relapse will continue to get worse. Maybe you had some kind of virus or PI-IBS. If symptoms continue, get tested.

[Zapper]

Okay... So it was c diff. I got very ill last night and back in the hospital. I can't believe I am on a 3rd relapse. A new symptom this time is incredibly painful stomach.
I also found out another surprise... I am pregnant.
Feeling pretty overwhelmed. I know my doctor wants to do an FMT but is it safe when pregnant? Thoughts?