Feeling terrified, frustrated and just can't do this again.

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kelseym
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Feeling terrified, frustrated and just can't do this again.

Postby kelseym » Sun Apr 03, 2016 7:21 pm

I'm scared I'm relapsing again. I know not everyone reads prior posts and histories so just to recap.. Had c diff in 2014, one round of flagyl cleared it. Mastectomy for breast cancer in Oct 2015, got it, flagyl, relapsed, vanco taper seemed to work. Off taper for 6 or 7 weeks, macrobid for uti, then second breast surgery 3 days later with IV vanco and 2 days of doxycycline BC I couldn't tolerate it. It's now 12 days later and the last 2 days have me scared. I'm crying and a mess and it's Sunday and I took pepto yesterday so not sure if I should even then in a sample tomorrow. Will this ever effing end? I haven't even have had this as bad as a lot of ppl on here but I'm so over it! I'm 34 with a young child and since last October I feel like my health is ruining me. I'm scared all the time. I feel like I just can't do this again. I hate this.
I haven't tried dificid, I have some. If I test positive again I qualify for a fmt but do I try what I already have or spend more money on this stupid bacteria from hell? The amount I spend on probiotics alone could pay for a second honeymoon in Hawaii in a year. And for what? What if they don't work this time?
What if this is just BC I ate something bad? Every time my stomach hurts I feel like I'm going to lose my mind. I was crying uncontrolled in front of my 4 yr old today and I'm supposed to go on vacation in May and have a crazy busy April at work and wedding's and I want to enjoy all the and not be worried! I don't want to freak about relapse while on vacation. I've been on abx since last October mostly and that can't be good for you. I'm sorry to rant and ramble but I just want this to go away. And never come back.

roy
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Re: Feeling terrified, frustrated and just can't do this aga

Postby roy » Sun Apr 03, 2016 7:25 pm

I can see your online wait for replys

roy
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Re: Feeling terrified, frustrated and just can't do this aga

Postby roy » Sun Apr 03, 2016 7:39 pm

If you have now got frequent watery D its time to consider treating but not just taking the Dificid you have in reserve.
You must get a Drs advice.
But if its the normal and totaly understandable stress reaction from your recent history it might be better to hold off from meds for a while.
PM Dobbies.
She is going through almost the same as you are

kelseym
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Re: Feeling terrified, frustrated and just can't do this aga

Postby kelseym » Sun Apr 03, 2016 7:56 pm

I have never really been the frequent watery 10 + sufferer. It's like 5 times, always within an hour of eating with lots of M. My last relapse I had blood but that was the only time.

I'm having the usual is it IBS or a relapse problem. I honestly can never tell the difference. The only reason I'm really freaking out right now is BC I'm in the range of days after IV abx that I've gotten it before. Within 15 days.
I would never treat without a positive test. I am torn on trying dificid since I already have it or doing fmt. IF I'm positive. Was looking for reassurance and opinion on the dificid. Dobbies had a taper while doing chemo if I recall and was good after right? I'm not doing chemo.

Lisa33
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Re: Feeling terrified, frustrated and just can't do this aga

Postby Lisa33 » Sun Apr 03, 2016 8:14 pm

I can feel your anxiety just from reading your post. You seem to be in full blown panic and putting an enormous amount of stress on yourself on what if I'm sick for vacation, what if I can't get through work this month, what if I can't make the weddings because I'm sick. That is a lot to put on your shoulders. This worry is going to make your GI symptoms a lot worse. Try to reel your anxious thoughts in to living in the now. It's a very hard thing to do, but you must try to calm your nerves. If I were you, I would definitely retest before taking any meds. I also wouldn't just start taking the Dificid that you have in reserve. If you test positive, then come up with a plan with your doctor. Maybe a Dificid taper, and then an FMT God forbid that fails. But, first things first, and find out if this is a relapse or not. You have to try to not worry about things that have not happened yet.

I'm so sorry you are feeling ill and pray that this is not a relapse. IBS can present itself very similarly, so try to stay positive.
Lisa

NanciT
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Re: Feeling terrified, frustrated and just can't do this aga

Postby NanciT » Sun Apr 03, 2016 9:40 pm

Kelsey,

I am so sorry you are going through this, you are still post surgery and I can understand why this is causing so much stress, you have been through a great deal. The fear can really take over, Lisa has given you some good advice. Before thinking about treating, find out first if you even need anymore treatment. This could be IBS, I tested 3 times over several months due to several days of D with ABD pain etc because I had also had to take antibiotics. Thankfully, I tested negative and I was nearly 100% positive it was back.
Talk with your MD about testing and the Pepto you took.
Hopefully all will be well, give yourself time to heal.........sending Positive thoughts your way
NanciT

kelseym
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Re: Feeling terrified, frustrated and just can't do this aga

Postby kelseym » Mon Apr 04, 2016 12:04 am

Thanks Lisa and NanciT. I'm trying really hard to keep cool. I'm also hoping it's just some IBS. Like I said I can never tell the difference except the IBS gets better after 5 days. I'm just nervous BC of the time period I'm in after the surgery. I'll call my Dr tomorrow and ask if I should test since I took pepto on Saturday. And I'll take it from there. Thank you for being there for me, all of you.

Dukiemom
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Re: Feeling terrified, frustrated and just can't do this aga

Postby Dukiemom » Mon Apr 04, 2016 3:33 am

Kelsym I want to start by saying that it is just not fair for you to have to go through so much. It is more than most people could endure and it is not at all surprising that you would be having the feelings that you are. Having said that, you are going to recover from cdiff. You will not have it forever. In your four year old's lifetime there will be a reliable, recognized cure for this disease that right now is so confounding. You are part of a group of people who are blazing a trail of trial and error for the medical community as it figures out how best to treat this disease and as the pharmaceutical community and research community that attempt to figure out how to cure us.

As for going forward, you seem to have access to drs who understand the current options and you have good enough insurance that Vanco and Dificid are options. Although it certainly doesn't seem like it, this puts you in a better position that most sufferers. I had four relapses and ultimately after another positive test. I believe, have been cured with Dificid. Although it is wonderful that FMT is available and has such a high cure rate, it too is being administered differently depending on where you are treated and has its own (sometimes long term)side effects as noted on these boards from many recipients. Most of them seem to say it is a last resort choice. One step at a time. If you have had a relapse, you have a good option in Dificid. If nothing else it would give you a reprieve as you can settle down and regroup and move forward researching and choosing to have FMT. You are not alone. You have folks on this board praying for you and caring greatly about your health and well being.

kelseym
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Re: Feeling terrified, frustrated and just can't do this aga

Postby kelseym » Mon Apr 04, 2016 10:19 am

Thank you Dukiemom. I'm sorry you had to go through so many relapses. I'm so glad dificd worked for you - did you only do the 10 days or a taper like a few others?

Dukiemom
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Re: Feeling terrified, frustrated and just can't do this aga

Postby Dukiemom » Mon Apr 04, 2016 10:57 am

I did the ten days on Dificid and my dr had said that the next step would be FMT and that I should pursue that option with my insurance so we would know exactly what to do because my weight was below 90 at the time. Based on what I have learned on this board, however, I would have instead asked for Dificid with taper as the next step, and if I had a relapse now after almost 3 months it is what I would do. I think it is wonderful that FMTs are an option but based on what I read here I consider it my last best option, with Dificid after vanco taper and Dificd with taper after that. Thinking about you!

Bobbie
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Re: Feeling terrified, frustrated and just can't do this aga

Postby Bobbie » Mon Apr 04, 2016 3:35 pm

Kelseym,
You have had more than one person should have to bear but you will eventually recover altho I know and understand your panic and desperation.

Numerous posters on this site have had both cancer and c diff and think c diff is worse. Dobies is one of our current posters with similar problems.,PM or email her. Do a search for others in the same situation. Misery loves company, and if one person can stand something, it gives hope to others.

Have you asked your doc for meds that might help such as anti depressants and anti anxiety meds? They might get you through the roughest times - but are addictive. I can't tolerate anti depressants but have taken anti anxiety meds and they helped me sleep and thus cope.

Have you tried counseling?

C diff is a particularly anxiety producing infection because it fluctuates so much. One minute you feel fine and horrible two hours later.

You will survive this but it will take patience, perseverance, and prayers.

We are here for you and understand what you are going through. I have a long hustory of c diff and other health issues,am 75 and work out four times a week. There were days years ago when I Had c diff and other infections and thought about suicide but it is a permanent solution to a temporary problem, and I didn't want to hurt my family.

Have you tried a heating pad on your abdomen while lying on your left side in a fetal position with your knees pulled up under your chin?

Remember there are more treatments than there used to be, and one will eventually help you. Check out CDI -pulsing and tapering viewtopic.php?f=4&t=659#p4770 and IBS and the three day rule viewtopic.php?f=4&t=672#p4787. Several Of our moderators were "cured" by the pulsing/tapering method. Some responded to Dificid and others to an FMT.

Feel better.

jds0870
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Re: Feeling terrified, frustrated and just can't do this aga

Postby jds0870 » Mon Apr 04, 2016 10:23 pm

Hey Kelsey
My heart goes out to you....I've felt just like you so many times. I didn't think I could do it for one more day. I also have small children they are 6 and 7 now both girls. They were almost 5 & 6 when I got this crappy c diff. I got diagnosed in February of 2015 after complaining to my doctors for two months how awful I felt and the d. I had no idea when they diagnosed me what a battle I was in for. I don't think anyone does when they are first diagnosed. Had an FMT via enema twice in December 2015. I have Graves' disease which is an autoimmune disease also. I have cried so many times and screamed and wanted to literally crawl outta my skin and give up. But I didn't and you won't either. Just keep lookin at your beautiful child and know that eventually you will be okay. You may never be the same cause I still have bad ibs d but you will get better and this won't always consume your mind. It will take place in the back of your mind. But please know you can do this. One of the toughest parts of c diff is healing your mind. There's so much uncertainty with c diff and the healing process. I think that's one of the things that makes it so tough. A very dear friend I made on this site and talk to daily via text now even though she's in New York and I'm in Idaho is....don't borrow worry sis...you already have enough to worry about. I believe Bobbie has also given me similar advice and she is a true survivor. I still tear up reading people's post on here and their suffering. There's no one I would wish this on. Lisa gave me good advice because she also had a little one when she was sick...she told me it's okay give yourself a break and don't be so hat on yourself. Youre sick and need let yourself heal. And don't be so hard on yourself your child will not remember mommy being sick they will remember the good stuff. I wish I could give you a hug. I'm so sorry you're hurting and will pray for you. For strength and healing. Stay strong you got this!

kelseym
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Re: Feeling terrified, frustrated and just can't do this aga

Postby kelseym » Mon Apr 04, 2016 11:10 pm

Thank you Bobbie and jds. I felt better today mentally and know I can do this. I'm going to wait a few more days on the sample as it really could be nothing more than IBS. I had it a year ago too and sometimes you never can tell, I just think the timing was bad enough for me to get that worked up. I also appear to have another uti. It's being cultured as we speak. So I'll deal with that and whatever else as it comes. I know I can do it. You all can and have done it. Occasionally the fear really takes over and it's hard. I know you all know that. I'm hoping to be fine and get through the uti meds with no issues. I'll ask my Dr about some anti anxiety meds. I don't do too well with antidepressants either, been off and on a few different ones at different difficult times of my life and usually I can only stand it for 2 weeks or so. I get too numb.
Just need to get past this next cpl of months and get back to the new normal.
Have any of you seen a naturopath or dietician and was it helpful?


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