Let's give a big, collective scream

[Bobbie]

Isnt it fun sitting in a doc.'s office for an hour waiing for your 10 min. with him/her?

Don't you enjoy taking a medication for years and then finding out it's been recalled because of all the harm it's done?

Don't you love to wait for test results? And wait? And wait?

Don't you enjoy being told you don't know your own body?

Do you have to remind yourself that the medical profession is overworked and stressful -- and then think about the work and stress of being a patient?

Let's all give one big collective scream to relieve tension. UGGGGGGGGGGGGG. Now, don't we all feel better?

One more thing - as frustrating as it can be here, we are fortunate to live in a country with competent medical care. Think of being sick in another country. I'll chose this one.

[Suezer]

Where is the like button?
Great post, I am sure most all could relate and agree on all points!

[AThurston]

And don't you appreciate making telephone calls and NeVeR getting a return call!!!! !!!AAAHH

[Bobbie]

I do have an answer for the "no call back" problem. I call again and say very sweetly, "I know how busy you are, but I need your help now and I'll keep calling until I get it."Sometimes it works; sometimes it doesn't.

I've been trying to get tests done for a possible transfer. Talked my husband into being a "donor" - amazed I was able to do that. I had to go to the doc. with him and explain "the embarrassing stuff." Showed his doc. an article on the transfer. He said, "Oh ick." I agree. He had all the tests, but when he went to the lab with the new PCR (he even took a laxative), the lab tech let the sample sit out without refrig. - I had it clearly marked "C. diff. Test. or refrig." I think the tech is from Africa - difficult to understand his accent. I believe he thinks the test was already sent - yes, the toxin test was. I can see why in a way - the nurse's instructions were poorly written. My husband is worn from all this - poor baby. I doubt if I'll get him to participate again. (He is 72 - never had a colonscopy. Handles health issues by ignoring them.) Unfortunately, he is all I have. My older son is in the UK; my young son has had C. diff. We have few family members left, and it would be difficult to ask a friend or neighbor for a "cup of shit."

I only agreed to this because of our trip to the UK. I had a "bad feeling" about it, however. I had been off Vanco. for months and doing well. Am back on it because of the possible transfer and not doing well - have had a lot of it for almost l9 years.

I think the "experts" are us. For the first time I feel like giving up but suppose I won't. Am going outside to plant some plants. Perhaps Mother Nature can "cure me." Father Time and Doctors Do Good (although some have tried with good intentions) haven't been been able to do so. This is just such a weird disease. I developed it almost 20 years ago because a good, competent, kind physician (who I knew well and was on a board with) gave me a "new" antibiotic. Scary, scary.

In case this frightens some "newbies" I am a "rare case." Developed infections (pneumonia) several times plus osteomyletis after and during my first bout of C. diff. This is unusual and "special." Remember about 80% recover with one round of flagyl/Vanco. The "frequent fliers" you see on this site are like me - the exceptions. There are new treatment "out there" now.

[amyc]

Hey, the test will be negative, which is all you need anyway. I wouldn't worry about it. Have you made your travel plans? Are you going to stay at the hospital's guest wing? Integris is a regional heart and transplant center, so I wouldn't worry about the cleanliness of their guest rooms re:C diff.

[getwellsoon]

Yes, I want to scream too. My GI put me on yet another taper. What makes him think this third time will do it? Maybe third time a charm. Bobbie hope it all works out for you. My next step is either FT or doing it at home myself if I relapse again. I'm sick of the meds. Hang in there, thats all we can do. Carol

[getwellsoon]

Oh another thing makes me want to scream. This last time I picked up my liquid Vanco taper med they told me they would only mix it 2 weeks at a time because it wasn't good after that. What?????????? So I told them, you gave me a big giant bottle of it twice before and now your telling me it might not even have been effective? They kind of stammered and then admitted it shouldn't have been mixed for over 2 weeks at a time, I should have come back every two weeks for fresh. I started crying and said Thanks alot, maybe thats why I cna't get rid of this horrible illness. What a mistake. Anyway, maybe this time will do it but how about screaming about that. I should have cusssed someone out but I was too upset. Carol

[AThurston]

Oh my Carol, I was not aware that you didn't know that, that is terrible.... The IV solution after mixed is only good for two weeks.. I bet you are furious!! I would be. Hang in there my friend, I'm praying for you and everyone...

[getwellsoon]

Thanks Aletta, Just finished my taper so we'll see how it goes. I feel ok right now but still have to take the Zantac. I think I have GERD. I want to stop the Zantac but can't because I wake up with horrible nausea and indigestion if I do. Hope you are feeling good too. Carol

[braziliannurse]

Bobbie,
Imagine having all these problems and live in a country where we have so many problems with medical care, like here in Brazil!
Sometimes I feel I will go crazy with.......I can't count with doctors here! They just say crazy things to me. The majority of them just believe I am not sick or never heard about this disease!!!!!!!!!
So, this support group is really a life- saver to me!
Thank you guys for all help!
Simone

[Bobbie]

Simone,
I do "feel" for you because as bad as things can be in the US we can usually find good medical care, and I know other countries, such as Brazil, don't have it.

I wish we could help you but don't know what to do. I contacted the manufacturer of Dificid for you - not available in your country.

Docs. here say the same thing - those that don't know much, "You can't still have this." I develped C. diff. again in Dec. after having to take an antibiotic for a strange UTI. I've had C. diff. for almost 20 years - on and off - although I had two or three good years until Dec. I do know how you feel even though I have access to far more care than you do.

You are not crazy; you are ill. Plus you are a nurse and have more knowledge than most. Remember that - and you know your own body far better than any "expert." The fact you are still fighting tells a lot about your character. You will survive, and someday you will be "cured."

Keep posting. We understand. At least, we can listen to you and empathize.

[braziliannurse]

Bobbie, I am so sorry you are going through all this again after years!
I really know how this disease can affect us psysically and emotionally!
Thanks once more for the support!
And definitely lets give a big, collective scream!!!!!!!!!!!!!
Simone

[CDiffHelp]

I'm so very sorry you are all having to deal with this nasty beast... Bobbie any new news? I know you were waiting for results to do possible FT.... How are things coming along? How are you feeling? 20 yrs is a very long to battle something, yet here you are each day helping all that you can. And I know myself, and so many are grateful for that and for YOU. Thank you for taking time to do all that you do, and for admitting to your frustrations, struggles and all that you go through in this. You are "REAL" and we needs lots more people in the world to be such a thing.

To everyone, you will get through this. You will get through this. You will beat this. C Diff will NOT beat you. Always know that you are not alone. It's okay to feel all that you feel. Sometimes it will kick your a$$ and you will feel defeated or depressed. It's not much different then grieving from a death. It feels much the same cause in many ways many grieve in regards to a life they once lived. But know one very simple thing... YOU ARE ALIVE and although some days you may not much feel like you are living while battling this horrific beast, you will AGAIN... Every morning that we even awaken we are being giving the gift of life. And as difficult as some days can be, we have to realize how truly blessed we are even to be here. Well over 150,000 people die in the world each day. Very sad thought, but did you also know that 350,000 are born each day as well. Many are born, many leave this life. The key is simple, living while you are here.

C Diff is ugly, nasty and makes us feel robbed in many ways. But it does not DEFINE who you are. IT DOES NOT!!! It's something you deal with it, but it is not who you are. There is always a light at the end of the tunnel no matter how dark it seems. And that light is in YOU.

This forum is incredible and helps so many. Bobbie, that in great part is because of YOU. It's because of everyone who reaches out and listens, shares and helps in any way possible. I want you all to know how grateful I am for YOU ALL.

My own update.... 12 weeks tomorrow since home FT treatment. Doing great. No signs of C Diff. Gained back 40lbs. Hair not falling out any more. And no more fevers, burning eyes, burning urine, crazy guts, and the rest of laundry list on c diff nightmares. Stronger every day. Still healing from the amputation surgery. But think now that body can actually get the nutrients it needs without c diff robbing it all, that things will start improving even more... I know the FT isn't for everyone. I also know the meds aren't either, based on my own reaction to them. Everyone has a fit with one treatment or another. I want some day to speak more of cures than treatment to be honest. I feel good about the treatments we've done, and all tests have remained NEGATIVE since... And I can say without a doubt if ever symptoms returned, we'd know how to better handle it now. I have not spent years fighting c diff as many of you have. I spent 8 long months awaiting answers on what I had and then treatments that failed for me. I am no stranger to hards, as many of us on here are... I battled cancer and was told I had 6 months to live, and proved many a doc wrong there. I almost died on more than one occasion from other serious medical issues... But one thing that has never changed is my outlook on life. And I know we are never given more than we can handle. FIGHT... FIGHT with all you are. This is a WAR that you will win. And it's just one battle in this thing we know as life. You will get stronger. You will find a cure. You will also find ways to find the positives in this negative. They are there...I know my husband and found our positive in this negative, by bringing awareness to others about c diff. By helping all we can know more and just being there and sharing our experiences in this. In the last 3 months time since returning from the mainland and having the Colonscopy FMT done there we have helped over 100 other c diff sufferers get treatments of other natures done at home, done with their own doctors, and helped get places who've never done FMTs to agree to do them. And all the men and women we've spoken with are in recovery and doing amazingly. For me, thats a HUGE positive. And if my getting this nightmare infection during my amputation surgery has helped others to rid their bodies, minds, and LIVES of it, then it was worth getting.

Please don't ever feel alone. Please reach out to others when you need to. Never be embarrassed, ashamed or afraid to ask for help. And allow your self to be human most of all. It's okay to feel tried and weak. YOU ARE HUMAN, none of us are SUPERHUMAN. We sure as heck try at times. lol. Sending so much blessings out to you all, and know that I, like many others here in this forum are here if you need anything. Pls msg me anytime if there is anything I can do. I sure as heck don't have all the answers. But I do have a heart and an ear as well as eyes to listen.

Peggy

[Bobbie]

Peggy,
Thanks for your lovely post. I'm glad you are doing well and so glad we helped you and now you and your husband are helping others. You have been through some horrendous things, and yet you still are fighting - and it sounds as though you are enjoying life. You are a special person and we wish you the best. Please continue to let us know how you are and keep encouraging others.

[AnnieKr]

Peggy, I have your post bookmarked so that when I feel down, I can read it, thank you so much! And thanks for all who contribute on this site and have helped me (you know who you are)... I am beyond grateful. You are all so brave.
Annie