In need of a friend

[Coco97]

23 yo female

Hi everyone I pray you are all getting through the struggles you are faced with. I tested positive for Cdiff in April and I was almost 8 weeks in the clear but I had retested yesterday and it returned. This infection has taken over my life I feel so hopeless. I don't mean to sound like I am looking for attention I just really need a friend. I have extreme OCD/anxiety/PSTD/Depression even before c diff but now it's completely taken over. My fear is horrible. My loved ones even struggle because of my ocd anxiety etc and I was wondering if there is any other girls out there like me that I can possibly talk to and share experiences, symptoms, etc with as I don't really have anyone to talk to. I can never be at peace. I feel so alone living in this nightmare. Please help me. ✝️

[beth22]

Hi Coco97 and welcome to the site. I'm so sorry that you are going through this, but C diff seems to unnerve many people and causes anxiety in and of itself. Since you had that even before the c diff, I'm sure it must be especially hard.

It is not uncommon for C diff to return, but you will get through it. What have you been given to treat it? Are you taking anything for the anxiety? Did you have symptoms or did you just retest to see if the infection was gone?

[Coco97]

Hi there Beth, thank you so much for your kind words it means a lot. I have been prescribed Valium but don't want to take it because risk of infection. No bueno with cdiff. I haven't been able to get ahold of my GI for two days. I got tested by my regular Dr because I was having the same symptoms I was having the first time around. I was originally diagnosed PCR first time then 2 weeks after vanco I tested only EIA and that was negative. This time the Dr. used PCR but this is only the second time I have gotten the PCR. I did an EIA as well but results won't be back for several days. Dr. wants to prescribe vanco again but last time I talked to GI during first infection she said if I got it again she wants to see if my insurance will approve dificid. Dr ordered vanco already but haven't gotten it as I don't know what the GI wants me to do. Hopefully that won't get in the way of getting dificid. I also hope they don't treat me if t by e EIA is negative but I'm not sure if I should risk waiting that long for the results to come back to start medication. It's so confusing but yes the anxiety and OCD is very troubling. Sorry for the king response! I appreciate you reaching out.

[roy]

Please be clearer about you symptoms.
Are you experiencing frequent watery D?
Positive by PCR but negative by EIA and no D is a negative result and that means no treatment.

[Coco97]

Hi so when I first had it I tested positive PCR had a lot of M, yellow mushy sorry TMI and abdominal pain sharp as well as sharp pains in my sides and back and felt very fatigue. I tested 2 weeks after vanco with the EIA and it was negative. I felt better had occasional M but nothing alarming. Then several weeks went by and I began having those symptoms again and it's been a little over a week today. My Dr gave me a PCR test which came up positive (I know everyone after cdiff will most likely test positive even without infection) so they ran am EIA but I haven't gotten results back yet. I hope that makes sense. Sorry.

[beth22]

I had a positive PCR and negative EIA for over two years and my doctors told me not to treat, but just to use Pepto Bismol as needed. If you can wait until you get the EIA, it would be better so that you know where you stand. Dificid would be my drug of choice. I used vanco for recurrences, but if I got c diff again, I would use Dificid. It kills less of your good flora and targets the c difficile. I hope you feel better soon!

[Lissaucd]

I feel the same way. I have bad anxiety. I know how you feel. If you need someone to talk to you can email me. I’m having a really hard time myself and got c diff back. I cry all the time and my parents have been helping me with my daughter. I feel weak, constantly nauseated and loosing weight. I hear you and please know I feel the exact same.

[Ril]

Lissaucd, you should try sending Coco97 a pm. If you notice, her last post is a month old. She has not been active on the site since July 16 so may not see your post. If you want to be in touch with her, she will get a notification if you send her a pm.

[Red1234]

Hi, I feel very similar to the other people posting. My family (I have 4 children - one at college) is tired of me asking them to wash their hands. I feel very anxious about it all and relapsing and I am seeing a therapist as a result. I was diagnosed 3 months ago. However, I believe I have been dealing with this for 3.5 years as I was very sick 3.5 years ago with symptoms and the lab kept saying my stool was too formed and would not test for Cdiff. My GI put me on Flagyl thinking it was an overgrowth of something and it seemed to help but then I had strange symptoms for the last 3 years. My GI mentioned I needed to see a Psychiatrist (even though there were rare times I had significant blood in my stools). I changed GI's and then last Fall 2020, I was very sick after I took a zinc supplement - and now I know I had Cdiff that time. However, I did not do anything thinking I was just ill and it did somewhat resolve on its own after a couple days. But then it seemed I was having bad IBS symptoms for months until finally in May 2021 I got sick with bad D and then I was diagnosed with Cdiff and put on Vancomycin for 10 days. I tried to tell the new doctor that I do not think this was the first time I was sick with Cdiff. I am not sure if he believes me. My husband seems frustrated with the cleaning and asking to wash hands, etc. I have one BM a day but it is massive no matter what I eat. I have lost 35 pounds and cannot seem to keep weight on but I am not in a danger zone of low weight, so my new doctor seems to think one BM is okay. But honestly, after 3.5 years but BM have rarely been "back to normal". However, the last three days it has been turning more and more yellow and mushy, so I am very very nervous. Thank you for reading and I appreciate any support.

[beth22]

Hi Red1234 and welcome to the site. You can find more information for new posters in the first forum.

I'm sorry that you have been so ill with this. Are you on vancomycin again? If the stools continue to be yellow and mushy, I would ask your doctor to retest. It may not be c difficile, but it would be prudent to rule it out. Many people have PI-IBS and can have mushy stools, odd colors, etc. It takes a long time for the intestines to repopulate with good flora. If you do test positive again, speak to your doctor about using Dificid. It targets the c difficile better and kills less good flora.

[Lissaucd]

I’m sorry, I know it’s overwhelming! My husband gets irritated with me too- I’m constantly bleaching and asking him to wash his hands. I’m a mama too! I would ask to talk to a infectious disease doc- they can really figure out what’s going on. Mine are yellow too! I have learned that this can be a normal part of the recovery process! And I still get mushy stools. I only go one to two times a day myself. But I’m almost underweight bc I lost 20 pounds. I’m not sure if it was from c diff or anxiety related to c diff I hope you feel better soon!

[Red1234]

Hello,
Thank you for responding. I appreciate it. And I am sorry you all are going through this as well. I am scared to get retested as I do not want to take antibiotics if not needed. I would get retested if the D returned (so hoping and praying that never happens) and/or if I do not stop losing weight. I do not have D but I have huge (really, it is way, way too much for what I eat) 1x a day BM (sorry, so gross). I feel so nervous about what to eat or not eat. I may consider going on medication to make my anxiety better. But I do not want to take anything that will make my stomach worse. Thanks again for responding to my post. This has all been so upsetting and I am having a hard time with it. I do not know how people stop the constant worrying about it.

[Lissaucd]

I hear and feel the same way you do. I was scared to eat, my mom literally had to come over and make me little meals. I felt like a child. But it worked. I started out small like tortillas with chicken and rice. I haven’t started my anxiety meds bc I’m scared too! Last thing I need is more GI problems! How about sending a quick email to your doc asking about your stool size? I constantly worry too, but it’s getting a little better. Feel free to PM me anytime bc I get it. I feel the same way.

[JocGreer]

I have had several reoccurrences of c-dif over the years and decided to try the fecal transplant. My doctor used OpenBiome and it was life changing. My symptoms subsided within 24 hours. It’s been 3 years since my fecal transplant and it’s the best decision ever! I actually did the frozen pills you have to swallow within a specified time. A nurse stayed with me and administered each pill, one at a time. I think I took 30 pills in 15 minutes. My insurance did not cover it but it was worth every penny. Back in 2018, I think I paid $3000 out of pocket for the treatment. I am not sure if the price has changed. Again - it was life changing. I would do it again if I had another flare up. Sending you positive energy.

[jackie24]

JocGreer

Where did you get the capsules done at? I am going to have to get a FMT and that sounds easier than the colonoscopy way.

Jackie24