Give up

[ashtontw]

When is it okay to give up?

I'm sitting here bawling my eyes out. I've been on Vanco since the first week of August. Tomorrow was supposed to be my last day of it. And I'm relapsing.
I don't wanna do this anymore. Every time I feel better and get my life back on track, I relapse and go back to being afraid for my life and so sick. I feel like I'm never going to beat this. I've been on the Vanco for months - why isn't it helping me? I can't afford Dificid. And it's in the same class of drugs as erythromycin, which I'm allergic to. My ID doc doesn't wanna do FMT. So is this it for me? Is this how I go?

I called my ID doc this morning and they sent a page to him. He's making his hospital rounds today and is not in the office. I told the front desk girl I'm terrified of going through the weekend not knowing what to do. Do I take an extra dose of Vanco if I don't hear back and see if it helps? I'm at a loss.

I don't want to do this anymore. But I don't wanna die. I feel like either this infection or being on these meds long term is gonna do me in. And I'm so, so, so scared. I just can't mentally handle the ups and downs. The false feeling of beating it and then it knocking me down again. It's torture. I want out.

[Lisa33]

You need to breathe. Are you sure that you are relapsing? Are you getting the frequent watery D? Since you have an allergy to Dificid, I am not sure why your ID doctor won't do an FMT as a next step plan? I didn't read through your older posts, but do you have other issues putting you at some sort of risk for an FMT? Barring any known risks, I would think that would be the best next option for curing this beast once and for all. You must stay strong and be hopeful. There are many posters on this site, who have been cured after long, hard battles with c-diff. You will make it through too.

Lisa

[ashtontw]

Lisa,

I'm very positive at this point that it is a relapse. My ID doc says he doesn't like to use FMT unless it's last line of treatment because it's a transplant and the risk of catching something else from somebody. He said the next step after FMT is to take my colon out.

Still waiting on him to call back as to if I can increase my Vanco.

I'm having severe cramps, a dry nausea feeling, and gritty diarrhea. Back to the orange-ish color, too.

I did get health insurance today, but it doesn't start until January 1. Nice to have that over with and covered but these next two months scare me as to what I'm gonna do.

[NikaNik]

Hi, Ashton!

I'm so sorry you're dealing with c diff and what seems to be a doctor who is not so knowledgeable. Dificid has patient assistance http://www.merckhelps.com/DIFICID It has a great cure rate, particularity the taper and/or pulse (it was a Dificid taper along with Enteragam - a medical food that is supposed to disable c diff toxins and heal the gut - that got rid of my infection last year after two relapses).

Also FMT has around a 95 percent cure rate the first time via colonoscopy (we have had a few posters need more than one, however). Taking your colon out, to me, seems absolutely nonsensical (and we've also had posters with no colon who have c diff - I believe it can be in the small intestine) so that makes no sense for the doctor to tell you and scare you unnecessarily.

Don't give up. I know it feels hopeless now but you will get better!

Nikki

[ashtontw]

Thank you Nikki!

I am going to fill out that form and take to it him. I have had horrible doctors my whole time with this since June. I went to this ID doc to get away from my GI doc who was borderline verbally abusive. I just don't know if I can take Dificid since I'm allergic to erythromycin - they are in the same drug class, I think.

I definitely want the FMT. I just know that I can't pay for it. My new health insurance kicks in Jan 1 and should help cover it, I think. I may just have to stay on Vanco until then. I'm not sure. I'm waiting on the doctor to call back and give me a plan of action. I'm a complete nervous wreck. I haven't stopped crying since I woke up, I can't get myself under control.

[overit]

Ashton,

Hang in there! You will get better. I know it's hard to believe that now but this illness is beatable! I relapsed 3x and eventually had the FMT which cured me but it's been a long healing process. I hope you are able to try Difficid or the FMT.

[ashtontw]

overit - Thank you!! This is my fourth relapse :( not even off the dang meds fully. I did "beat" it once for about a month, until I had to take an antibiotic for a UTI. That's what led to this relapse and now reoccurence/relapse.

I need my ID doc to get on board for this FMT. I created a Go Fund Me and put it on my FB. I'm grasping at straws to be able to get a cure.

[susant]

I have had three fmts and been dealing with cdiff over a year and I haven't given up. I'm pretty sure I still have cdiff pending results. I say all of that to tell you... you're going to make it. I have had days where I literally contemplated suicide because it seemed easier than trying to get rid of this devil bacteria. I'm 28 and have a beautiful daughter and husband that I have to fight for... we can't give up. If we give up cdiff wins and I'll be damned if I'm gonna let cdiff win. Cry. Scream. Punch your pillow but at the end of that get up and fight. We are young and we can do this. Fmt may be your magic cure. It is for many people. My immune system isn't working for some reason... vancomycin just doesn't work for some and that may be your issue. You will beat this. You can message me anytime if you want to vent. I get it...

[beth22]

I relapsed when I was on one pill a day and then I had FMT. You can see if Rebiotix is still conducting clinical trials. One of the doctors out here in CA was part of that. If they accept you, it does not cost anything as far as I know. You can check the Rebiotix website and see if anyone is doing them in your area. If not, I would try and find another doctor. There are doctors listed in the doctors section by location who do FMTs. If your ID doesn't want to do it, find a doctor who does them.

[Ril]

Beth said exactly what I was going to say. Don't give up!!! Do not let this dr bully you! If he won't do a FMT change drs and find one who will. Most who do them would do it for you unless for some reason you are not a good candidate, and you don't know that to be the case.
But first look into Difficid, with the help of a good dr. Since they have the pt assistance program it might be a good option. Don't just assume you can't take it. Find out for sure.

You can still kick this. Giving up is not an option. Come to this site to vent then go back and fight!
Rita

[Davidtm]

I'm sorry but I feel the need to chime in. If my ID Doctor said that to me I would be asking my primary for a new referral and to a GI. The next step after fmt is colon removal!? I would think that the numerous people cured by a second fmt who still have their colon and are now in recovery would greatly disagree. You are not without options and as someone who has had to fight a long time uphill, through heavy rain, and against raging winds I assure you there is always an option. I feel for every story and person I read about on here and almost take it personal when I see them in these situations. Hang in there Ashton and please don't give up. I've been on vanco for months waiting for the fmt to be figured out so if you need to wait until your insurance kicks in then you can do it. Just don't give up and stay strong. I look forward to hearing your future successes with this!

[georgina]

Ashton
I'm in same situation as you . I have pulsed, tapered, and cold turkey went off vanco so many times I quit counting , i done a Rifaximine chaser , had a nasogastric FMT , can't touch Dificid , very difficult to get it in Romania and i have to sell my house for a long course of it , my doc doesn't have the time to perform colonoscopy FMt for me , no options left until a real cure comes out . Been fighting this since april 2015 and got pretty tired of fighting , diets etc but at least i'm not living in fear anymore. Right now i'm pretty sure that if i test the result will be postive but i won't test because i can live with the rough mornings , i keep my anxiety and depression under control with meds and thank GOD that i don't have the full blown symptoms , no out of control diarrhea , no excruciatng pain or high fever.Try to stay hopefull that this round of vanco hasn't failed and it may be a bad tummy day and if that fails the you go for the FMT and if that fails you go for another one until you get well or until the real cure comes out.
By the way , if your doctor has proposed the colectomy , you should start looking for another doctor soon ! Colectomy is reserved ONLY for severe cases with toxic megacolon , not your case , and as NIKANIK said you can still have Cdiff even after surgery ( Davis L'Heureux case ).

[Bobbie]

Ashtontw,
I've had c diff off and on for years and understand how you feel - desperate, alone. And scared to death. (My younger son also had it.)

If by giving up, you mean suicide, please, please call a suicide help line. Suicide is a permanent answer to a temporary problem. If I "over read" your remarks, I apologize.

Please get some counseling. You will recover - eventually. We tough ones survive. Get a new doc. Yours sounds like a jerk who enjoys frightening patients.

[ashtontw]

Bobbie - Thank you so much. I sometimes wonder if it's worth the suffering and fighting, but ultimately I am more fearful of death than anything in this world. I could never take my life. I want my life back, so badly. The fear is just so overwhelming sometimes. Thank you for making sure I am safe. I am seeing a therapist weekly. Things have been going really well until the last three days.

Georgina - I'm so sorry you are stuck on the treatments also :( Are you on Vanco currently or on nothing at all?? My ID doc thinks this may not be C Diff. But the cramping and empty/nauseous feeling I'm having and the 4 pounds I've lost in three days are telling me otherwise. I hope to God I can get in to see him on Monday like he wanted. He wouldn't raise my Vanco today at the ER since my blood work is all "perfect." Which it's not...I got the results emailed to me, and my total protein is high. Not sure if that's relevant.

David - I know, the colon removal freaked me out. He said removing a portion of it and that that is the last stitch effort. I almost got a referral to an FMT today, but my blood work in the ER came back clean and the ID doc doesn't wanna tweak my meds even though I'm having symptoms and still wants me to finish taper and pulse. Pulse starts tomorrow. I have a bad feeling. I'm supposed to follow up with him Monday but I may be giving him a call tomorrow as he is on call this weekend. I have a script of Vanco on hand that hasn't been filled. I feel like I've been through this enough times to know.

Ril - Thank you!! I came close to getting the FMT referral today. If I keep progressing into relapse by the time I see him on Monday, I'm going to demand it. There is a doctor about 30 minutes away from me who does it. Money is the only thing holding me back. I would hope he'd at least put me back on the Vanco to hold me over until I can get the FMT if it keeps steering that way.

Beth - I will check into Rebiotix, thank you for the suggestion! ID doc isn't convinced that it's C Diff and wants me to see a new GI and says other things can cause D. But after going through this four times, I'm fairly confident in my symptoms. Can't get an accurate test since I'm on Vanco still, he tried to get a test done for me today at the ER anyways but they refused it because it decided to be soft/formed while I was there, of course. I was diagnosed on soft. I wish these labs would realize that it's different for everyone. So many people are at risk of getting severely ill by being turned away for tests.

Susan - Thank you so much for the encouragement. I'm so so sorry you're dealing with it for so long. I am about to be 27, we are so close in age. You're absolutely right about not letting C Diff win. I just hope that my fight is enough and that it's not just gonna take me anyways. Have your doctors given you a next plan of action after the failed FMTs??

[georgina]

Haven't touched vanco since july , i'm keeping the vanco in my cabinet in case of a full blown infection. Right now i can live with 2-3 bouts of D and cramps in the morning.