Feeling defeated and needing support

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LT428
New User
Posts: 10
Joined: Mon Jul 24, 2017 11:03 am

Feeling defeated and needing support

Postby LT428 » Thu Sep 27, 2018 10:57 pm

Hi Everyone,

I’m hoping to find some comfort and support through this post. I’ve been dealing with the C Diff diagnosis since July 2017 because of clindamycin. To summarize, I’ve been off of medication after 3 relapses since December 2017 and test negative twice, with the recent one in July of this year. However, I’ve been living with an epigastric pain since the beginning of the diagnosis. The pain is consistent and never goes away. Two different GI doctors have diagnosed me with IBS and that’s all they can do for me. I’ve tried adjusting my diet from being gluten to dairy free. I’ve tried the fodmap diet. I’ve taking the most expensive probiotics. Nothing works for me!

I went through a lot of changes this year. I recently got married and purchased a house. I started a new career and the most exciting part, expecting a baby girl in December. However, with all the positive things that are happening, C Diff is still ruining my life. Everywhere I go, I search for a bathroom for just an “incase” moment. I don’t enjoy taking vacations anymore. Unfortunately, in the last week, my symptoms have gotten worse. I’ve gone from going once a day to 2-3 times a day with different consistency and color (sorry, TMI). So far, no WD, but I’ve tested positive with firm stool in the past. I work in a hospital so the likelihood of me re-infecting myself is pretty high. My stomach has been hurting more. I tried to get an appointment with my GI but the earliest I could get was the end of October. I feel like C Diff is lurking to attack for relapse.

Is anyone going through the same thoughts and feelings as I am? Part of me just need to accept that I will never be the same again, but I can’t come to term because I was perfectly healthy before this whole diagnosis. Food is now my enemy and I don’t enjoy it anymore. I sometime eat only one meal a day because my stomach hurts. I live in fear with every bathroom trip. With my upcoming delivery, I’m scared of being Strep B positive and getting a C-Section where antibiotics is necessary. I don’t know what to think at this time except for seeking mental health as I live every day with fear and anxiety. I no longer trust doctors. No one around me understands and I believe people are beginning to think I’m crazy. The first GI even told me to get over it because it’s not cancer. I know it’s not cancer, but the pain and fear I live with every day is not making me happy.

Thank you for listening to me ramble. I probably sound crazy. Though I don’t post very often, I cherish each and every one of you.

-LT428

beth22
Long Time Contributor
Posts: 9485
Joined: Tue Apr 07, 2009 2:23 pm

Re: Feeling defeated and needing support

Postby beth22 » Thu Sep 27, 2018 11:58 pm

If you are due in December, perhaps the baby is pushing up against your stomach too. I know that can cause nausea, but maybe it can also cause pain if your stomach is extra sensitive since the c difficile. I remember having a lot of rib pain during the last months of my pregnancy, but that was a long time ago.

After your baby is born, perhaps the GI will do an upper endoscopy on you to see if there is anything to be seen - gastritis, ulcer, etc. If you need to treat during delivery with an antibiotic, then you have no choice. Maybe you can take Dificid afterwards. After your baby is born, you will have more choices - meds, FMT if necessary. Meanwhile, there is not a lot you can do except what you are already doing with diet. You don't want to take a lot of IBS meds when you are pregnant.

NanciT
Long Time Contributor
Posts: 2468
Joined: Thu Sep 18, 2014 12:01 pm

Re: Feeling defeated and needing support

Postby NanciT » Fri Sep 28, 2018 12:32 pm

I agree with Beth, perhaps after the baby an endoscopy might be a good test to have if you have not already. I want to add recovery can take time, sometimes it's rapid for people on the site, for others like myself it takes a long time.

Diet is what drives me, I go back to bland if I get any GI upset which seems to always help. I did go through CT, endoscopy, lab etc post CDIFF to make sure nothing else was going on.

Do know things will improve, the pregnancy can cause GI issues all by itself. I used "Sea Bands" for nausea which really helps

Take care

NanciT

CSHF
New User
Posts: 16
Joined: Wed Oct 26, 2016 2:40 pm

Re: Feeling defeated and needing support

Postby CSHF » Wed Oct 10, 2018 9:01 am

Hi LT.

First of all, congrats on the positive changes you've been experiencing, most of all, becoming a mom! This is just to share that I have had similar thoughts and feelings in terms of the worry, frustration, and hopelessness at times. I think of it as a post-trauma response- always waiting for the next shoe to drop, for the infection to come back. And although I have support and good coping strategies and know what to do (stay in the present, enjoy what is in front of me....), there are times when I just can't help but worry. Visiting the forum is helpful because I am reminded how many other people are going through this, too, and whereas I would not wish this on anyone, I do feel better knowing there are others who get it. And the information people share is so helpful.

I have an autoimmune disease, which complicates cdiff treatment and vice-versa. The other thing I will say is that on a personal level, the most difficult part of having a serious chronic illness for me is knowing when to accept a new normal and knowing when to fight (fight to get back to my old normal)- if I can put it that way. Intellectually it seems simple- just accept where I am now and make decisions from there. But in practice it is not simple and not at all easy. Do I bother with more research? Do I see another doctor? How much of my resources do I put toward fighting? Do I force myself to go out to dinner when I dread it, but maybe there will be something good about going out; what to do? Do I just give in...?

I hope you feel some comfort knowing the forum is here, and I hope you are able to enjoy some of the good in your life now. Good luck to you & I hope you'll post some updates in the future.

Mindy
Regular User
Posts: 56
Joined: Sun May 03, 2015 1:58 pm

Re: Feeling defeated and needing support

Postby Mindy » Wed Oct 10, 2018 5:53 pm

I'm three years post c diff, and I still think about it every single day. I feel for you. I still feel only 60 percent of myself and just have to accept it. Best of luck on your new baby. Keep us updated.


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