Having a rough few days

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Davidtm
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Having a rough few days

Postby Davidtm » Sat Nov 04, 2017 5:06 pm

Having off days doesn't seem to get any easier for me. I was just thinking how I didn't have any issues the entire October.. then I'm hit with an off day yesterday and sensations and uncomfortable today that I just want to let up. It's so hard to differentiate what I remember as the start of a relapse and normal Ibs/off days. I've thought I've been relapsing at least 2 dozen times since my fmt in February. 8 months out and those all too familiar feelings have me worried. I guess time will tell and I just have to keep an eye on it and hope for the best. Reading some of my older posts since the fmt I see the same worried guy but also got comfort again from the support.
When I have off days it gives me a tunnel vision for the rest of my life. It's hard to focus on everything else around me and pay attention to what needs to be done or enjoy. I wish it didn't happen like this. I just want to feel safe and away from it. I know relapses/reinfections this far out are not common and that it's normal to have off days occasionally. Things going back to normal seems to be the only thing to put an end to the anguish during these times. I hope everyone else is doing well! How did you all cope? Deal with concerning days so that it didn't consume you?

amg
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Re: Having a rough few days

Postby amg » Sat Nov 04, 2017 7:49 pm

Hi David,

You're 8 months out! That's excellent and should help inspire some confidence, unless you have used antibiotics. Your body has had a long time to heal and build up its immunity and ability to keep c diff away.

My daughter has the same feelings as you do any time her stomach gives her issues. The best way we've coped with it is to try to take a logical approach. When she relapsed, she didn't just have looser stool; she had other symptoms along with it including mild fever/chills, puffy abdomen, pale face, EXTREME fatigue. If she doesn't have those other symptoms, we tell ourselves not to be scared and to try to relax because yeah, stress makes everything worse.

Recently she was having days of looser stools and cramping and a bit of urgency, and she was tired, and we both were starting to worry (and this is after almost a year c diff free), but we realized she was tired because of her volleyball schedule and she had NO other relapse symptoms. And we soon figured out that almonds/almond butter sandwiches were giving her the cramps and looser stool!

We cut out almonds, and everything is back to "new normal" now.

There is most likely a non-c diff reason you're feeling the way you are. I hope you figure it out soon. But I totally get what you're saying. And I'm sending prayers and good wishes you feel better fast!

NanciT
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Re: Having a rough few days

Postby NanciT » Sat Nov 04, 2017 9:00 pm

Hi David
I think this is a struggle many of us go through so please know you are not alone. Time is what I needed, alot of time. I also thought I had relapsed so many times but what I found is my diet played a big role in this. When I felt poorly, I would go back to bland for a few days. Then slowly work my way back up to eating a more varied diet. I still struggle with it, the IBS comes and go and there are now months when I feel like my "before cdiff" self.
You will get through this, hang in there and know you are not alone
NanciT

beth22
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Re: Having a rough few days

Postby beth22 » Sun Nov 05, 2017 2:09 am

I get those days too. In fact earlier this week, I had some loose bms too, which I haven't had in ages. It continued, so I tested yesterday. The doctor hasn't called, so I assume the test is negative. But, I also came down with a sore throat and sinus symptoms yesterday, so perhaps it was the start of the virus. I would eat bland for a few days as Nancy suggested and see what happens. Pepto Bismol helps me with IBS symptoms.

MKW
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Re: Having a rough few days

Postby MKW » Sun Nov 05, 2017 5:30 pm

Hi David, I had my FMT around the same time as you, so am 8 months out also. I developed IBS a few months following my FMT and still struggle. I ended up with bad anxiety and panic symptoms, so my PCP put me on Klonopin about 2 months ago or so. I have to say, it helps ALOT. My doc says I have PTSD from C Diff. My thought processes are NOT healthy to say the least, and I can't afford therapy. I work full time and lead a busy life, but I am afraid a lot of the time. I have intermittent IBS symptoms... I feel fine for a few days then bad for a few, feel perfect for 2 weeks, then horrible for days. I don't know why. Initially I tried to attribute it all to food intolerances, but that is just not the case. I often have worse symptoms on my relaxed days when I am less busy, so I can't just attribute it to stress either. The hard part psychologically is that initial IBS symptoms mimic initial C Diff symptoms. Painful cramping and urgent BM's. The difference with IBS is the D ends up and stops, and with C Diff it doesn't and progresses. So, for about 12 hours I psychologically go through fearing a C Diff recurrence each time. It is like TORTURE. I have gotten to where I tell myself that it's not a relapse now when I have an IBS attack. ... The fact is when you become a hard to cure case, and treatments fail, and you become one of the UNLUCKY ones, it changes you. C Diff is potentially fatal, can lead to colectomy, sepsis, and even death. Part of us knows that. Part of us fears that. And we know we still likely carry the bacteria, and no matter what the statistics are, when you have become the rare statistic, you fear that will happen to you again. So how do we ever get past being afraid of C Diff?????? I have absolutely no idea. How do I cope currently? - with drugs. Do I need therapy? absolutely but can't afford it! ...The one thing I can say is don't let it stop you in your life on your days you are afraid. Don't not do something you want to do a single day over this. It's already robbed you of enough ya know. As far as the thoughts and fears, I have no answers, and sometimes think I will be terrified of C Diff forever. I can tell you that you are not alone! and sometimes that is the biggest help of all, just being able to relate to other people and all we emotionally go through with this. When I read posts from people on here who have coped and dealt with this for many years and have been strong and managed, it is a great comfort and it keeps me grounded in healthier thinking I believe.

Bobbie
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Re: Having a rough few days

Postby Bobbie » Mon Nov 06, 2017 12:32 am

David'm,
Have dealt with c diff for many years. Just when I think "I am cured," it acts up again and "bites me in the butt."
I think the uncertainty is what makes it such an awful disease. I am sure I have IBS but need to make sure.I agree with you and with MKE, but at least we have others for support. I have "good" days, weeks, and months and "bad"days, weeks, years.

I had planned on dying before I ever had another scope but it has been 5 yrs, and I am so uncomfortable. I gave in and am having a colonoscopy and an endoscopy In several weeks. We are going out of town for Xmas so hope to feel better. The scopes will not give me such a 'Merry Xmas."

At least with this site and other support sites, we have company, and "misery loves company." Years ago when my son had c diff in 1979 and when I had it it later beginning in l963, there were no support groups. This was one of the first in 1998-99.

Take one day at a time and hang on. In the meantime let's have a contest on descriptions of c diff. A " good" week for first prize. I wil go first:

DESCRIBTIONS OF C DIFF

Bobbie - disgusting and damnable

Nancy1
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Re: Having a rough few days

Postby Nancy1 » Mon Nov 06, 2017 1:39 am

Good contest subject. I submit:

Humiliating and embarrassing

georgina
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Re: Having a rough few days

Postby georgina » Mon Nov 06, 2017 1:50 am

Disgusting , embarrassing , lonely and scary!!

MKW
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Re: Having a rough few days

Postby MKW » Mon Nov 06, 2017 10:11 am

I will go with: Isolating and Terrifying

Lisa33
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Re: Having a rough few days

Postby Lisa33 » Mon Nov 06, 2017 10:24 am

David - You are definitely not alone with these feelings. Everything you said, is exactly how I felt for quite some time after c-diff. I thought I was relapsing several times as well. I definitely had PI-IBS. If something was going on that made me worried or stressed out, the IBS would kick in. Food was never a trigger for me. Sometimes, the off days just happened for no rhyme or reason. I'm 3 years out, and still have bouts of IBS from time to time. As time went on, the less worried I was about relapsing. We are all so in tuned to our BMs and every twinge or unusual feeling that we get in our gut because of c-diff, that our mind automatically goes to the worst. I'm sure that this happens to people who never had c-diff and they don't feel the least bit anxious that something's wrong. I'm sure you will get back to normalcy again soon.

Davidtm
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Re: Having a rough few days

Postby Davidtm » Mon Nov 06, 2017 5:23 pm

Thank you everyone. You're all very encouraging and a great source of perspective during the times I can't see 10 feet in front of it. I think I need to write a message or take a video on the good days and encourage myself and watch/read it on the bad days.

My descriptive words for c diff:
Intrusive, annoying, and taxing

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Having a rough few days

Postby NanciT » Mon Nov 06, 2017 7:24 pm

My description: Painful, isolating, lack of understanding from Healthcare providers

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: Having a rough few days

Postby MKW » Wed Nov 08, 2017 11:21 am

Hi David, I was thinking about your post again since I suffer with a lot of fear of spontaneous C Diff recurrence (meaning onset of active infection due to non-antibiotic undetermined cause). You always say something that sticks with me.... I just want to feel safe.
Me too. It's not that I can't deal with pain and suffering, or treatments or procedures. I just feel so "unsafe" also. Psychologically a sense of safety and security is almost a basic need of people. This is the core issue of the Anxiety we experience. And no matter how hard I try I just can't seem to overcome it. On a daily basis, I review the internet and especially Twitter for any articles concerning treatment developments for C Diff. I think ALOT of my fear has to do with that it turned out my only effective treatment was a non-FDA approved experimental treatment that in my area I had to go out of town for to a teaching hospital, that regular GI's aren't even allowed to do. All the initial doctors I saw were ignorant about recurrent C Diff. It was awful. ... I just wanted to post again here because I feel you are phrasing the core issue that needs to be dealt with psychologically- how do I create a way I feel safe?.... I wish I could afford therapy for this. I know I need it!!!! The truth is I believe I will feel "safer" when these microbiota restoration drugs hit the market, and when the c Diff vaccine and the new narrow spectrum first line treatment drug is available also. These will happen in three years or less. All are starting or are in stage 3 trials. I just hope the trials go well. And maybe it will just take time. I get frustrated on this board when people post they have had c Diff recur 8 months or 10 months later for example, and then they don't post again. I'm left wondering why they recurred or if this could happen to me for no apparent reason. .... but, I believe one day we WILL feel safe from this :-)

Acres
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Re: Having a rough few days

Postby Acres » Wed Nov 08, 2017 9:18 pm

My terror: The need for abx. It's always on my mind.....Having a lyme issue and tried a few days of doxy...I literally went temporarily insane when my stool went south...It resolved after I stopped (I also over did it with probiotics)

My new terror : How do I deal with lyme w/o abx ? Trying the herbal route...we will see...

I can relate to your anxiety...Live with it everyday as well....
I pray every night for a cure....

Contest: Gut terrorist

Ril
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Re: Having a rough few days

Postby Ril » Thu Nov 09, 2017 12:28 am

Disgusting, isolating, provokes feelings of hopelessness


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