Fighting Anxiety

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Kuro
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Fighting Anxiety

Postby Kuro » Thu Jul 05, 2018 7:48 pm

Hi everyone,

I hope all had a good 4th of July.

I've discussed the topic I would like to raise via private messages with trusted friends here, but I've decided there is no need to be so embarrassed about it. It's a common, important problem for people with C. Diff during and after. The problem: anxiety.

To elaborate a little, I have had Generalized Anxiety Disorder with a pretty specific focus on my health for most of my life. I'm medicated daily. I had been doing really well and was even tapering down my medication dosage until CDIFF hit. At that point, the fear it created just consumed me. It's not just that I'm sick, because I was physically disabled for 12 years prior to this and handled that. It's the unpredictable nature of the disease. For me, I have a particular fear of relapsing.

Yesterday, four months after my last Vanco, I flinched and chose to submit for a PCR retest. I know it's not good to do, but it's done. My GI isn't opposed to testing but will only treat if a positive comes along with D. Personally, I hope for a negative so that my recovery can continue! I'm more than happy to have my anxieties proven wrong.

The fact that I did this still shows that I have a problem, which is that I am not handling the anxiety caused by my CDIFF well enough. Or, maybe you'd say the worsening of my GAD caused by the disease. I am working on getting connected with a certified online psychologist who specializes in chronic illnesses. The online aspect will be very helpful in that we can have video meetings, we can send messages, and no need to worry about making appointments. I'll still worry about relapse even with her help, particularly since being disabled means I can't access or afford better treatments like Dificid or FMT. However, she may be able to teach me some ways of better coping.

I'd like to ask both people going through CDIFF and veterans who have recovered, how are you handling the anxiety caused by C. Difficile (or, how did you if you feel you've overcome the anxiety)? What tips do you have to share which have worked for you?

Ismaila
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Re: Fighting Anxiety

Postby Ismaila » Thu Jul 05, 2018 9:14 pm

Dear friend,

I have suffered a health anxiety for about 12 years now. I had every test for almost every disease, and would calm down for a while , and then would get scared with something else ( or move to something else). And then: C DIff! From clindamycin. My Vanco treatment was (successfully) finished on April 19th 2016. So - 2 years and three months ago. And guess what: I still fear it like hell! I never became completely at ease as far as C Diff goes. Every time my IBS flares up, I think the worst. Every single time. I do not believe there was a single day during the past 27 months that I would not think about this horrible illness. Sometimes I ask myself: What kind of life is this?

I personally do not have a good piece of advice to you - if I had it, I would help myself. But, I want to tell you that you are definitely not alone, and I think that this beast in particular affects us mentally because it is unpredictable. Or at least we think so - but many doctors would say that it is not the case. Majority of people get treated and move on.Many people get treated and never get it again.

But, yes, some of us keep on lingering, keep on fearing, keep on thinking and ruminating about it. These days I have had somewhat bad period, and I am going to see my GI after a long time. I just want to be reassured that it can not come back just like that, willy - nilly, without real exposure to antibiotics. But, I would also like some help with my IBS - do I take too many probiotics, do I take wrong ones, what is it that I am doing wrong, that sometimes I would have days with cramping, spasm, D, pain....I am very, very tired of this, to say the least.

Anyway, based of what we all know, especially from this fantastic Forum, if one is relatively healthy, does not spend time in nursing homes or hospitals, and, most important, avoid antibiotics - chances are really low, and for many non-existent.

I also take medication for anxiety, and next week I will ask my doctor for Elavil, old antidepressant that many GIs prescribe to calm the stomach ( for IBS). I want to give it a chance, because I heard a lot of good things from many IBS sufferers. But, it also calms the mind. I truly believe that Clostridium Difficile bacterium affects the brain by ravaging the gut.

It is very good that you will have sessions with a good therapist. It will surely help, at least some. And I want to hope and believe that with more time passing this anxiety about C Diff must disappear. Because, if it does not, how can one live?

All the best to you,

Ismaila

Kuro
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Re: Fighting Anxiety

Postby Kuro » Thu Jul 05, 2018 11:34 pm

Thanks for your reply, Ismaila. I can relate to every bit of it!

It really is the unpredictable nature of the disease which makes it hardest to handle. Will I relapse? How long will these annoying, weird sensations last? When will my stomach better handle more foods? Is what I'm feeling normal, or is it coming back? All of these questions nag at me in physical ways. Don't you miss the days when our health anxiety was just us being crazy, and a little reassurance brought us relief? :)

I have thought about an antidepressant. Unfortunately, most of them would have a bad interaction with a drug I take which can cause Seratonin Syndrome (and that can kill you). So, no antidepressants for me overall. Maybe the really old ones like Elavil, but I remember taking that because it had some possible benefit for my disability and it ended up not agreeing with me. I hope it works for you, Ismaila!

I absolutely try to believe just what you say, that it doesn't tend to just relapse at random after a point. The further out we are, the more we avoid antibiotics and exposure, the less likely relapse is. But, also like you say, I still panic when things go in an unexpected direction. Not helpful at all.

By the way, congratulations on making it 2 years and three months! I hope that I can say the same thing one day. Right now, I'm hoping for a negative test so that I can keep saying I've made it 4 months. After that, I'll worry about working out my other symptoms.

I often see it said by veterans that the further out you go, the less you worry about the condition. I think that is generally true, but for those of us with health anxiety in particular, maybe not as reliable.

beth22
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Re: Fighting Anxiety

Postby beth22 » Fri Jul 06, 2018 2:07 am

Hi Kuro - I am a veteran of sorts, but I have been testing positive on PCR for the last two years, ever since I came out of the hospital and had antibiotics. I am considered colonized. The EIA test is negative, meaning I don't have an active infection. However, knowing that this can change from one day to the next and knowing that I really can't take antibiotics again without causing a relapse, is very disconcerting to say the least and does cause me anxiety. The problem is that anxiety in and of itself can aggravate GI problems. I, too, wonder if I will ever be well and back to normal. I feel like walking time bomb ready to go off.

What I do - I try to keep busy. When I work, it takes my mind off things. I know in your case, that is more difficult, as you are mostly at home. But, perhaps you can find something that interests you to take your mind off it. A hobby, reading, online classes.

Personally, I pray. That gives me a sense of hope and is calming. If you are not religious, there is always meditation. Some people have done very well with that to ease anxiety, blood pressure, etc. They have classes for that, but if you can't attend, I am sure they must have them online or at least a description of what is done. There are also relaxation exercises. My mom used to do that. There is biofeedback. Maybe the psychologist that you will be talking to can suggest some of these.

notheidi
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Re: Fighting Anxiety

Postby notheidi » Fri Jul 06, 2018 2:32 am

Great thread, and timely for me since I just had a scare. I have also felt that the more time goes by, the more the anxiety improves, until and unless that anxiety is triggered again.

For me, time helps the anxiety transform from a daily huge constant preoccupying thought, to maybe a daily little thought. Then if I have a scare, it becomes the huge constant preoccupying type again.

I'm sorry that others are suffering with overall health anxiety too, but it is helpful for me to hear people talk honestly about it. I'm wondering if others who have it live alone or feel socially isolated or have a weak social support network? That seems to be a part of it for me. I overreact to health stuff because there's no one to process it with, or to keep an eye on me, so a lot of times I head to the ED because I get really scared. I try not to do that because the ED is a bad place for germs, and I end up getting extra tests because I'm there and they have to take me seriously for their liability, so I've had more CT scans than I can count. Which makes me sad and scares me too. Ugh.

I think it's partly a personality trait, the tendency to easily escalate from responding to a candle as if it's 5 alarm fire.

roy
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Re: Fighting Anxiety

Postby roy » Fri Jul 06, 2018 3:04 am

Theres another way to look at the positive test if you dont have symptoms.
It means your body is coping with c.diff and not reacting to the toxins.
EXACTLY the aim of the medical world if they ever bring out a c.diff vaccine!
A positive test without symptoms does not mean you have c.diff (the disease) but it does mean you have strong immunity to its disease causing capability.

Kuro
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Joined: Thu Mar 29, 2018 5:12 pm

Re: Fighting Anxiety

Postby Kuro » Fri Jul 06, 2018 3:07 am

@Beth: You and I talk privately, and you know that I always value your input and responses. I do have hobbies which I do online from home, involving creative writing and gaming. Unfortunately, even those are a bit uncertain right now due to how I feel in the given moment or such. It's possible to inconvenience even online people when your offline issues take you away from the keyboard! I also have found trouble focusing on that without letting my focus be drawn away and back to CDI. It's really hard right now, as I await my test result.

@notheidi: Sorry to hear about your scare. It was a scare that prompted me to test, as you might have read! I am about the same as you in terms of catastrophic thinking, particularly with my health. I had finally started to overcome the worst of a 12 year (painful but technically harmless) physical disability, seeing a bit of life, when the CDI result hit out of nowhere. Suddenly, my lifelong IBS seemed like a cakewalk and CDI has been consuming - particularly whether or not I'll relapse - to the point of fracturing my relationship with my support network, the two parents I love so dearly. That's part of why I am now getting a psychologist and seeing how that works out. I've never felt socially isolated because I have my parents and a community of online friends in the hobbies I have maintained, though both have been limited by this sudden change in life.

@roy: I am hopeful for a negative test, but if it comes out positive in the absence of D, my GI will not advise to treat. I certainly hope you are right for me on all other counts! However, I am having what I consider nuisance symptoms, bothersome enough to upset me/interrupt my day (and again, my anxiety may inflate that) but not enough to warrant the ER or anything like that. I've been told by another mod that hospital policy is now to follow a positive PCR with an EIA test, so I wonder about that, but I hope - again! - that I won't need to bother with that.

Ismaila
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Re: Fighting Anxiety

Postby Ismaila » Fri Jul 06, 2018 8:35 am

@ Kuro - I had to laugh when you said that about IBS and us being troubled about it; yes, these were wonderful days! And yes, how I miss them. By the way, I believe that all of us with prior anxiety and especially health anxiety, actually do have much harder times overcoming this whole thing. We just process things and feelings and bodily sensations differently, and that goes around a full circle, and further upsets our gut. I firmly believe this.

@Roy: Roy, it is always so good to hear anything from you, because, you , and some of the ladies running the Forum, are bottomless source of knowledge, and, yes, comfort to all of us. I was comforted so many times by Bobby, Beth, Georgina, and Nanci, and felt so much better afterwards...
I just have one question that has been confusing me all this time: if the spores do stay forever (?), how come , after the successful treatment, some people keep on testing negative? I am pretty sure I do not understand how the tests work, but if you can explain Roy? Many do have negative tests after treatment and move on, right? So, is there a chance spores sometimes do get expelled?

@Kuro: I am thinking of you, and it will be negative!

Best of health to you all,

Ismaila

roy
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Re: Fighting Anxiety

Postby roy » Fri Jul 06, 2018 9:45 am

Yes spores can be overcome by the returning "good" flora and be expelled/destroyed/rendered harmless, though they are not readily detectable by any of the currently available tests.
It's very likely that almost everyone that had c.diff does eventually eliminate the spores.
GDH or PCR might detect a low infection but that's why they should never be carried out unless theres already a high suspicion of c.diff because of symptoms.
BUT even if you do eradicate all the spores the chances are you pick up new ones many times in the future and your body just deals with them without becoming sick.
Having c.diff in your gut is not always a disease because the normal, healthy microbiome is very well equipped to keep it in check.
Several studies I read say that once someone becomes sick because of c.diff the chances of a new infection if they take antibiotics in the future is higher.
My opinion is that if antibiotics have already caused someone to have c.diff then that is proof that their particular gut microbiome is susceptible to damage so caution has to be used in future.

Ismaila
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Posts: 147
Joined: Sun Mar 06, 2016 11:20 am

Re: Fighting Anxiety

Postby Ismaila » Tue Jul 10, 2018 12:36 pm

Quick update on what Roy said - apparently, totally true ( as usual with Roy). Gastroenterologist / internist at Virginia Hospital center in Arlington, VA, a partner of MAYO clinic, told me 4 days ago that MOST of the people eventually get rid of the spores. Most of them, he stressed, especially if not exposed to new round of antibiotics soon after the initial infection. Some do not , though. But he said it is not common. Good news after all, I guess...


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