Early Recover Struggles

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Early Recover Struggles

Postby Kuro » Sun Apr 22, 2018 6:24 pm

Hi everyone,

By my count, I am going on twleve days out from my last dose of Vancomycin (first course of treatment ever). I'm having a hard time of it, so I thought that I would post. Most of this is just me saying what's going on. Sorry to be negative, but that's what vents are for!

For those who have not followed, I am a 33 y/o male diagnosed by a GI specialist. We all thought I just had IBS, but then the big panel of tests he did came back clear except for C Diff. I was an atypical case because I had loose but formed BMs with M, never WD. In fact, been kinda C again since treatment. Always been chronically C. Still, all was negative for all except the CD PCR, so that's what my GI has treated. I've tried to have faith that he made the right diagnosis. I took Vanco 125mg 4x/day for 14 days.

1. Fear. This has been my biggest problem so far. I have learned and read so much, I kind of live with lots of fears even with anxiety meds (I have GAD/depression and health anxiety). My biggest fear is relapsing, which happens in the early stage. I think it would leave me feeling defeated to not be the 80%. I have read about people relapsing months or years down the road for no reason. I can't get away from the feeling that it's gonna happen, one dose won't be enough to never have this again. It's like having an axe hanging over your head, waiting to see if it will fall.

2. Trouble facing the day. When I go to sleep, I have some peace. When I wake up and am kind of in that place between fully awake and asleep, I still feel okay. I try to push myself up out of bed by telling myself "you've been doing okay, you will be alright, you don't have to live in fear" but what I'm really thinking is "another day of feeling lousy and afraid." The second thought has been more true so far.

3. To follow the second point, feeling lousy. I just do. I don't have a better word for it. Exhausted (even after 8+ hours sleep!), no energy, no real interest in anything other than reading more about my new condition or worrying about it. My hobbies involved things on the computer with other people, but it's difficult now to commit to that and to concentrate.

4. Appetite and weight loss. I've lost a lot of weight since this started in February, enough that a lot of my clothes don't fit anymore. Unusual for me when I was overweight prior. I'm too scared to weigh. I've tried adding a bit more to my diet, but I worry about eating something which will upset my stomach. There is also a point where my body says "no more" to food and just doesn't want to eat, even though I know I'm not eating enough. I have tried adding new things, like a well cooked vegetable to my rice and chicken dinners, or some very plain cereal to go with my toast, or some baked banana chips. It's just hard.

5. Having hope, being positive. Very, very difficult for me. This early into recovery, like I said, I am just waiting for the relapse. My anxiety has me on edge, to the point that it sometimes creates some physical symptoms like nausea! I try to wake up on a positive note, but not much luck with that so far. My usual hobbies are on the computer, but I have trouble doing them now, which doesn't help this issue. I suffer that chronic relapse fear and just being so sure I won't be the 80%. Not even sure when I can start to feel secure that won't happen.

6. Fear of leaving home. I am physically disabled with another condition which is painful but does no harm (but is pelvic, of course - just my luck). It was already hard to leave home, and I haven't since I learned of the CD. This isn't good, but I figure I need more time to heal. Unfortunately, I don't have it. I have to go to see the GI's assistant on Tuesday and I worry about stomach troubles while out. In June, I have to travel an hour to see the pain management doctor for my regular disability visit and med refills. Not sure how to face all that. The upcoming Tuesday appointment is purely to reassure me since the GI knows I am very nervous/upset, and I have been told I can ask for a retest during the visit. Should I for peace of mind?

I have so much going on that it's hard to vent it in just a few points. I know I should feel fortunate. I may not go much in the restroom due to C and light diet, but it's not D/M/B when I do (knock wood). No fever, no serious abdominal discomfort, none of that. I am sure I'm malnourished after eating BRAT for so long, but otherwise, I just don't feel great. I've read this is normal early on, just not sure if what others are feeling is what I am. It's hard being an atypical case in some ways.

More than anything, I guess it bears repeating that I am afraid. Mostly afraid of relapse. It feels like what life and sense of security I had managed to rebuild after my first disability has been taken away. If I do relapse, well, I'm poor and only have a Medicaid insurance plan. A lot of the treatment for relapsers, I wouldn't be able to afford. I was surprised they covered a course of Vanco.

Being afraid sucks, as does obsessing (often on the worst outcomes). I still can't help but do both.

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Re: Early Recover Struggles

Postby Ril » Sun Apr 22, 2018 6:45 pm

Kuro, this disease causes anxiety and fear in all of us but it seems as though you are being paralyzed by yours.
Many of us have taken medication and by the sound of your symptoms I suggest that you speak with your dr about the possibility of anti anxiety or antidepressant medication and think about speaking with a therapist. There is nothing wrong with getting help to deal with your fears.

You do not retest to prove cure. You go by symptoms and you do not seem to have any.
Again, I stress that this is an anxiety provoking illness, most of us have gone through some degree of what you are describing but when it gets severe you should get professional help rather than suffer.

Good luck,

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Re: Early Recover Struggles

Postby Kuro » Sun Apr 22, 2018 6:59 pm

Hi Ril,

I am already on anti-anxiety medication. I was prior to when CDiff came on. We had actually been weaning down the dose some because I was making progress with not needing it, but I guess I may have to give that up and call my psychiatrist to request more. I get very little money as a disabled person, so adding on more doctors who may not take Medicaid (my psych doesn't, but I like him) is a challenge at best.

From what I've read, I don't think I am expressing fears others haven't expressed, that they worry a lot about relapse and not being the 80%. But, I just needed to state them somewhere, regardless. Should I not take the offered retest, then? Testing negative for Toxin B would be something, at least, for my anxiety. I think.

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Re: Early Recover Struggles

Postby roy » Mon Apr 23, 2018 8:39 am

Testing without classic symptoms can lead to a "diagnosis" of c.diff even though it's not causing a disease.
A specialist would (should) know that and know that treatment is not required.
If you were to test again now it's highly likely to come back positive, It did before and will probably do the same again.
That does not mean you have the disease known as c.diff it only means you have the bacteria, and that's NORMAL!

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Re: Early Recover Struggles

Postby K723 » Mon Apr 23, 2018 9:08 pm

I am 24 years old, and I’m currently dealing with c diff for a third time, the doctors are going to have me taper off venco. I too have struggled with anxiety for years and was also about to attempt to go start going off anxiety meds when I ended up in the ER. My dr had over looked my pain. I said I was having bad pelvic pain, she kept describing me antibiotics. Fast forwarding a month later in the ER they tell me I need my appendix out. After my appendix surgery I got c diff. I had been on antibiotics for almost two months basically for no reason. Unfortunately my insurance does not cover my medication, man that stuff is expensive ! I learned how doctors are over prescribing antibiotics and so many people are dealing with c diff. It is how my surgeon said “ a bitch” for sure. Plus it’s so uncomfortable. Hoping to kick this for good.

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