ANGRY AND RESENTFUL NOW

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okaylo
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ANGRY AND RESENTFUL NOW

Postby okaylo » Thu Nov 17, 2016 8:41 pm

Looking back on all I have been through I am angry and resentful now. I took 2 rounds of CIPRO to treat SIBO in Nov 2014 and then ended up with CDIFF in Dec 2014. I had no idea about CIPRO and the risks that were associated with CDIFF when I took it. Anyways, treated the CDIFF and was negative Jan 2015-July 2015. I was still testing positive for the SIBO and treated it again in March 2015 with CIPRO and then with Xifaxan in July 2015. Still no resolve and I tried special diets as well. My doctor told me I was just going to have to live with the SIBO as it had been treated 4 times with no resolve and I could not continue on these antibiotics forever. So I have lived with the SIBO since then. (I worry about this every day as it can cause damage to your intestinal lining along with numerous other issues). In Dec 2015, I tested positive for CDIFF again (a whole year later, not sure when it actually manifested or if I picked it up from an outside source as my Uncle had been recovering from CDIFF around the same time I tested positive).

I have recently told my mom about this and how angry I am and that I should've been warned and she said that my doctor or any other doctor could not predict what would happen or how my body would react and they are not God and that we can only move forward now with no need to dwell on the past. I feel as if CDIFF is very under acknowledged and more awareness needs to be raised on it including what antibiotics may put you at risk or are a "high risk" to take. I wish someone would've given me this knowledge earlier and maybe some of my problems could've been prevented. Since all of this, I have been through countless rounds of antibiotics for CDIFF and have undergone 2 FMTs and am trying my best to recover. My gut is destroyed from all of these antibiotics and I have IBS, food intolerances, and do not digest food how I should. Some of these issues were present before CDIFF and some of them were developed after or became more prevalent as CDIFF wreaks havoc on your body and seems to just make everything worse. I have since found a list that a fellow poster put on here about which antibiotics are "high risk" and I think it should be shared. I'm not sure how to post this without just pasting it here so I will leave it and if a moderator can put it in a separate post I think it would benefit many people...

What classes of antibiotics had probability of causing a C Diff recurrence:

→ Low probability or no chance: Sulfonadmides, Mandelamine, Fosfomycin, Furadantin
→ Low probability: Sufla-trimethoprim, narrow spectrum beta lactam (such as penicillin, cefazolin), Macrolides (although recent data suggests these may no longer be safe), Tetracycline, Aminoglycosides
→ More risky, but relatively safe: Broad-spectrum beta lactams other than third-generation Cephalosporins, Carbapenems
→ High risk antibiotics to avoid: Clindamycin, Amoxicillin, Fluoroquinolones (Cipro, Levaquin), Third-generation Cephalosporins (ceftriaxone and cefotaxime)

If this can help just one person avoid what I have gone through, I will be happy. While my doctor has done everything he can for me over the past few years, I think we all need to do our homework and I wish I would have known more overall and about this site when I first developed CDIFF. Along with the resentment and anger has come fear, sadness, and anxiety which I'm sure many people have seen from my past posts. My relationships with loved ones have suffered and my quality of live overall has not been good or positive. I am meeting with a counselor tonight to discuss my issues and hopefully find better ways to cope. I wish everyone who is enduring this journey or recovering continued well wishes and the best of health. Hope this can help someone.

roy
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Re: ANGRY AND RESENTFUL NOW

Postby roy » Thu Nov 17, 2016 9:07 pm

That list has been posted here many times!

okaylo
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Re: ANGRY AND RESENTFUL NOW

Postby okaylo » Thu Nov 17, 2016 9:20 pm

My mistake, I was not aware.

NanciT
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Re: ANGRY AND RESENTFUL NOW

Postby NanciT » Thu Nov 17, 2016 11:57 pm

I think MANY people come out of this angry, and we each have a right to feel that way. There are many on this site like myself who have had several doctors, apathy, lack of compassion and on and on. There are also a great deal of us who were given antibiotics and I was an inpatient at the time so more than likely picked it up from the hospital.
As these feelings come up, think about what you can do with them. I landed here on this site, wanted to take my negative experience and turn it into something positive by helping others. I needed to put all those feelings someplace, it also gives me the opportunity to see so many on this site who have endured so much, some are still in this battle. Some don't have access to care or medications that I did. We all have battles within the battle of CDIFF.
I know you are in the process of getting your appointment with counselor. While you are waiting, maybe think about starting a journal. Write out your feelings, the good and the bad. Sometimes it helps to work through these feelings and it can also give you some insight to have things are improving.
Just some thoughts
Feel better soon
NanciT

beth22
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Re: ANGRY AND RESENTFUL NOW

Postby beth22 » Fri Nov 18, 2016 3:04 am

Diet can help SIBO. I've had it too, but it was way worse before. I'm surprised they treated it with Cipro. I got c diff from Cipro too, but actually I should be glad that is all I got and you too. If you look at the more recent guidelines for Cipro and that class of drugs, they have tightened the recommendations for using it as it can cause severe and irreversible neurological damage. It always had a black box warning, but now it is not recommended for sinus infections and even urinary tract infections unless there is nothing else. Personally, I will never take it again unless it is a life or death situation. It is one of the high offenders for giving c diff. I learned it the hard way too.

Bobbie
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Re: ANGRY AND RESENTFUL NOW

Postby Bobbie » Sat Nov 19, 2016 11:19 pm

Most of us have some degree of anger about having c dif. The doctor who was supposed to help us unwittingly hurt us.

I had gone to the same doctor for many years and took my son to him. I was in a board with him and considered him a friend,

I had a series of sinus infections he had been successful in treating but in February 1993' he prescribed a "new" antibiotic called Vantin. Because I trusted him, I took it and became horribly ill four days later. I have had problems ever since. Vantin is now seldom prescribed because of all the c diff linked to,it.

This doctor is a fine man and good doc. He meant no harm. "Shit happens." I don't blame him but would like my old normal life back. Unfortunately, it ain't going to happen.

More is known about c diff now so your treatment might be successful early on.

okaylo
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Re: ANGRY AND RESENTFUL NOW

Postby okaylo » Mon Nov 21, 2016 4:17 pm

Nanci, I have since been to a counselor and am trying to work out my issues. I have quotes that I say to myself every day to reaffirm that I am going to get better. I do gratitude exercises at the end of each day now where I reflect on what I'm grateful for and I am keeping a journal to write my feelings out especially on bad days.

Beth, I am sorry you endured a lot of what I have gone through as well. I hope you are doing better and better continuous days ahead.

Bobbie, you're right. I am sorry for what you have had to go through. Your journey has been much longer than mine. And you're right. Things happen, we can't go back. It's difficult not to be resentful and question all of the "what if's" but the past is the past now I guess. Continued well wishes to you.

Also, I can't remember who here has had an FMT or has done research on them... I know the FMT is the ultimate probiotic for repopulating the gut but has anyone else heard of any other suggestions? I know some people say fiber but I can't handle it even the smallest amounts. I am trying to add foods in slowly in extremely small amounts. It's like learning to eat all over again. I know what works for everyone is different on an individual basis, just wanted to hear what other people had to say...

Rehanauu
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Re: ANGRY AND RESENTFUL NOW

Postby Rehanauu » Tue Dec 27, 2016 12:31 pm

I feel for you about being mad when the doctors didn't inform you of the risk. My first bout of c. diff was after taking Cipro too. It was my 9th round of antibiotics in less than a year, all different types, to control a tear duct infection/blockage until my surgeon got back from a trip out of the country. No one told me about c.diff or what could happen when you take that many antibiotics. Had I known, I would have just found a different surgeon and gotten it done sooner.

And just a few months ago, I relapsed after being given a round of Amoxicillin for a sinus infection. I told the doctor I have a history of c.diff and kept asking "are you SURE this won't make me relapse?" He said Amoxicillin "almost never" causes c.diff, and as long as I eat yogurt, I'll be fine. I even asked the pharmacist when I picked it up. She said the exact same thing. It had been 6 years since I last had c.diff, so I thought I would be fine. I ate yogurt religiously and took a general/broad probiotic daily. Still relapsed. I got a cat bite that got infected like a day after c.diff onset, and the ER kept insisting I take antibiotics to treat it while I had active c.diff. HAH! I used a prescription topical and it healed just fine. And then the stupid doctors office wouldn't answer their stupid phone so I could get proper treatment! Getting a new primary doctor soon. The anger is real.


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