i just need to throw a fit......

[teresajo103]

Not so very long ago (like in September) I was a very healthy 54 yr old grandmother. Thanks to a total misuse of ciprofloxacin...I am now not so healthy. I have been to 6 doctors ....the er 11 times...spent a week in the hospital.....taken flagyl, vanco....twice and dificid. I have tried prebiotics, probiotics antibiotics anxiety med, pain med, anti spasms, I have tried everything under over and around the counter. My poor husband works a full time job.....then comes home cooks..and takes care of me. I know how hard that is because I took care of my epileptic daughter for 26 yrs. ...I worked full time....and then had home duties to take care of......and dealt with a sick kid. He is patient most the time....but he gets tired too. He told me today when I get well....he is not doing anything else in this house(hahaha...he was just kidding.). I have good days and bad days. I realize I am so lucky to have him.....and my best friend KC. My problem is.....I don't want to be sick....I want to love my grand kids....I want to go to the casino....I want to go to a restaurant and order whatever I want. I want to spend my christmas money on something other than doctor visits and medicine. I want to go see my parents and my sister's. I have a niece that I have never gotten to see....born in October. I missed my grandsons birthday party....I was in the friggin hospital. I slept thru Christmas day. I have literally spent whole nights in the bathroom.....for two months I hardly came out of my bedroom. I don t really have a point to all this.....I just think this is the worst predicament I have ever been in. C diff is ruining my life and nobody in the medical profession is really that interested. Thanks for getting it guys. Just a really long day with little to no relief.

[Bobbie]

Vent away. That is the purpose of this forum.

C diff has affected my life for many years. My then four year old son had it in 1979 when few, even doc's, knew anything about it. he had it again six years later. He is now 40, smokes - has asthma- and works in a sushi restaurant. Raw food - just what he needs. He was ill often as a child and almost died several times.

C diff is one rotten infection. I developed it the first time in 1993 when I was 52. Before then, like you, I was healthy except for sinus infections and allergies. I am now 74.

You will recover and see the people you miss and love. In the meantime, call and email who you can. I'd find another doctor - preferably a GI or an ID. Look into your other option - FMT - if you aren't responding to treatment.

Your husband sounds like a gem. Tell him so from all the female posters on the site.

Try to get up more and exercise if you can. It one of the things that has helped me keep what is left of my sanity. It won't cure your c diff but it will help you mentally and physically. Start slowly with short walks and work up to longer ones. Try to stay way from antibiotics. I've had c diff 3 times - all linked to antibiotics for pneumonia or UTI's.

I am sorry about your daughter. You've had some tough breaks in life. Hope tomorrow is a better day for you. Let us know.

[beth22]

I felt pretty much the same way today. I got diagnosed in May 2008 and my life has not been normal since then. I can't eat a lot of stuff, I don't see a lot of people I used to see because getting together most of the time has to do with food. I was very depressed all day and wondered if I will ever be well and like you said, the medical profession really doesn't seem to care. They want to write you a prescription and send you on your way, even if the prescription doesn't help. I'm tired of being my own doctor, doing the research and bringing it to the attention of the doctors. I really don't think anyone cares. Not sure what to do any more either. I'm pretty much worn out as are you. I understand totally what you are saying. Hopefully, there will be new treatments soon. Now I have to look into getting another FMT and I've already had a few. My husband is tired of all of this too, although he does help. But, no one likes having a chronically ill spouse.

[justme]

Believe me - I understand!! It's been nearly two years in recovery for me. I was lucky and didn't relapse, but it was very difficult finding anything to eat that my digestive system could tolerate. I keep trying probiotics, but the gas they cause makes me give up for awhile - but I keep trying. Nearly every day, there is colon pain and abdominal discomfort, especially at night. I am way better than I was 6 months ago and 6 months ago I was better than a year ago, etc. That's how I count my progress - where I am now compared to where I was. I can walk a 20 min. mile and I could barely walk around my cul de sac last year. I don't want to make trips to be with my grandkids because they are in L.A. and 5 hrs. on a plane doesn't appeal to me. However, I am one of those very lucky ladies who has a husband who bears with me through it all (and does most of the cooking and shopping). Going out for dinner is a challenge - finding something to eat that you aren't going to have to pay for in bathroom then next few days. But, in my case - 7 years ago I had an SCA and had to be revived 7 times. I survived with quite a bit of brain damage, but it is barely noticeable now. If my brain can heal, so can my damn colon. We are tough survivors and we will make it! Distractions help as does exercise. Unfortunately, healing is a slow process, especially when it is an organ that gets so much use. Hang in there . . . this too shall pass (eventually).
Aloha,
Anne

[teresajo103]

What is it about this nasty illness.that makes you want to just lose your mind? I am so sorry I have a tendency to be very impatient. I appreciate all the words of very kind wisdom.

Bobbie...I have been looking into a fmt. My gi doctor just wants to make certain we are past the UTI. Meanwhile, my pcp has ordered another cuture/sensitivity test and I have to wait on the results of that to see where we are. My husband is being tested to be my donor, not that he was particularly excited about that. He is one of a kind though I have two grown daughters that are their daddy made over. I have to tell you about my daughter Mylissa....a kinder soul never lived. She was born with epilepsy...she has been through every hospital that would see us. Odessa/Midland, Lubbock, Dallas, Houston, and several others that she accidently wound up in. She couldnt drive so I drove her 60 miles every day so she could get her bachelors degree in criminal justice and her licensing as a paralegal. It is rather funny now that I think about it. She would go to class and I sat in the car and crocheted or read or occasionally took a quiet nap. In 2004, they had a new device that was finally FDA approved for treatment. I worked for over a year to get her eligiable for the implant....seizures at that point were up to 3 a day. She was implanted with a vns device (it was a gruesome invasive surgery) and she finally started to be "normal". Long story short...she is married...has a beautiful little girl (my 3 yr old little miracle)...she is a police/fire/ems dispatcher....and seizure free for 10 yrs last November.


Beth...I understand what you mean about food. Nothing but adverts on tv of things we can not tolerate. I am a pizza freak....and I would not dare touch that. I am to the point that one more dominos commercial and I am having the cable disconnected (LOL)
I have had horrible pain all weekend but unless I get where I can not take it anymore....the er is not an option. They dope me up.....and send me away. I have perscriptions at home.....and they are probably not going to knock me out for two days like the crap they give me in emergency. The depression has been my hardest obstacle. I have become a cry baby and my husand can take on a 300 pound man head on....but let me start to cry and he cant handle it. My pcp has been our doctor for over 20 yrs. But, my husband is so mad at him when this is over....simply because we do not want to start all over in the middle of this.....we will more than likely look for another family physician. I absolutely agree that a chronically ill spouse is not something any one wants to deal with....luckily we have good ones that are willing to try.

Anne....I am truly glad you did not relapse. I have to tell you, not long ago...I had a few good days and thought that I should try beef....WRONG!!!! It was just a grilled child size hamburger patty.....but I paid for it for days and days afterward. We are having snow and very cold weather right now.....I know...it is supposed to be hot in Texas....but we live in the panhandle.....so the past week has been Winter on a major scale. I am wondering if i should just go to the fitness center. It has an indoor walking track and a pool where...before c diff I would swim laps. We will get better.....and you are right...this too shall pass.

Well...I have rattled on enough. I am so glad I found every single one of you. We came together as strangers with a horrible sickness but I have come to think of you all as my c diff family. Have a good day. Hug to you all.

[NanciT]

I am right here with you, days and nights of frustration, hoping and praying to get my "life" back. I have said these words over and over," I just want my life back"

I have had other difficult illnesses in the past and...I recovered. C Diff is not only at times relentless, the recovery itself is difficult. The frustration with Doctors has been unbelievable. SO many ER visits...I once had a nurse tell me" If you had a positive attitude you will stop vomiting", that was after IV Zofran. I am a health Care Provider and could never imagine treating anyone like that.
I have gone the same route as many here for 10 months and finally after a 3 month taper/pulse dosing of Dificid....I believe I am in the recovery stage. I finally tested negative! I now have "good" days and I am thrilled to write those words. Eating is a challenge, I have developed severe IBS with the DIficid but things are getting better. I have a very simple diet and drive my husband crazy at night when the Pizza commercials come on and I say..".maybe tomorrow" but that day is still off for awhile.
This site is where I found my Hope from so many sharing the same experiences. Wishing you brighter days ahead, they will come.

[megan2]

I am 54 too. I have no other health problems other than this c diff now. It is worse than the cancer , anyerysm and gallbladder surgery I have overcome. This cdiff has destroyed my insides , ruined my job, killed my social life made me almost totally bedridden . I am discussted by the medical field for the way doctors have acted like this is nothing and that I am making a big deal of nothing. I am weak , dizzy and in pain and no one will help me. I am desperately trying to rebuild my intestinal flora and in fear of this rearing its ugly head again. The reason this is worse than my other health issues I overcame is that I knew where I stood with them. I believe weather it is true or not that I will never be able to live the way I once did before this c diff. It has caused my insides such horrific damage. I wake up waiting for my next BM only to examine it praying it will be formed. I spend all day drinking water so I have energy. When will this all end? Will this all end??

[Dobies#1]

I too am tired of living my life around the after effects of C Diff! I've been off Vanco for well over a year yet I still worry over my BM's! If my toots smell I worry. one stomach cramp I worry. I get so jealous of folks who can take any antibiotic with no problems. it's crazy! It's consuming and exhausting. I am having UTI symptoms as we speak and I dread going to the doctor tomorrow. I've had off and on burning but urinalysis' always test clean, but I had my yearly pelvic and Pap test Thursday and I've been burning down there and having abdominal pain ever since. Worse this time! The thing is I don't know why. My cycle is messed up ever since finishing chemotherapy so it's hard to tell if it's a female issue or a urinary issue. I think it's time to demand an ultrasound. Anyway if it is a UTI or any kind of infection for that matter I'll panic due to needing an antibiotic! My ID doctor who has moved to South Africa told me to try Vancomycin along with whatever other antibiotic I may need and for seven days after completing antibiotic therapy to try to prevent C Diff recurrence. But I've heard from some that their doc recommended that for only six months after C Diff therapy. So I wouldn't know what to do. It's crazy that while I was going thru chemo, I never worried about infections and I was so vulnerable to them then, but now I freak out over a paper cut! I never thought I'd be experiencing menopausal issues due to chemo or especially bowel issues at the age of 38! God help all of us!
Teresajo, where do you live in Texas? My husband and I moved to NC from Lubbock. I'm originally from the Midland area and he's from the Panhandle.

[teresajo103]

Nancy....I was taken to the er by ambulance in December....I was not conscious and I don't remember that 1 mile 450 dollar ride in a giant white box. when i got to the er they hooked me up to wires and ivs and oxygen and auto bp cuff things on both index fingers....and put me in warming blankets. I truly thought I was a goner. when it was all calmed down and I figured out where i was and tht it was just dehydration....i asked the er doctor why i fainted like that .....he said honestly....i think it was the combination of pain and dehydration....but i just do not know. I have more respect for that than the guess work my pcp has done. I dont think they realize how bad this scares us. Now we just try to wait it out unless it gets too out of hand.

megan....i totally get it. i am not so dizzy but i am still weak and the abdominal pain is unbelievable. i keep thinking it will get better when i get off the vancomycin. i stll have 3 weeks of pulse. i had a consult with my gi about fmt but it cant be done until uti is gone. i have been tested but i havent got results yet. its always something. i am calling my pcp tomorrow and making an appt. i am also sending dr miller a message that describes this weekend in incredible graphic detail. (lol) Maybe that will get his attention. i have decided i dont have to be like this and if they wont listen....i will find somebody that will. i think it will end....i just dont know when.

[teresajo103]

Dobie...
Iam originally from Odessa. We live in Denver City....the southern south plains. My youngest daughter lives in Midland. I think it is really a small world. My gi doctor is in Lubbock and I truly do like him. I just wish he would do something to fix ths. I am having an awesome day today.....but one hamburger patty caused me three days of mortal hell. I had a urine test done on Thursday....but dont have results yet. If we can get it cleared up while I am on vanco.....I can get the FMT done and hopefully start getting better. It is a crap shoot (no pun intended) but I am going to beat this some how. I even called a doctor in Houston bout doing the enemas myself. Of course, my husband lost his mind over that one. He says there are professionals that can handle that. (lol) Anyway, It is just nice to have people that care about how you feel and what may be working and what isnt.

[beth22]

If you can have someone do the enemas for you, I would have it done and you can always follow up at home. The problem with doing them at home (and I have done them) is that you can't get that far up with the solution, whereas a doctor or nurse can do it with the regular enema bag and have had more practice. I'm especially depressed because since I have just tested positive now again after 4 years, I would need 3 positives in order to qualify for a doctor to do FMT. I'm waiting for my results. The on call doctor was not kind enough to call with the results yesterday even though they were ready. That's what I mean about not caring. Even if they are negative, I would like to know. I will have to wait until tomorrow to find out. Meanwhile, I'm dealing with the pancreatic issues and again, doctors don't seem to want to make a connection, but I believe there is one.

I guess we all have to hang in there. Not much choice. The problem with me is that the small intestine is involved, and FMT enemas or colonoscopy wouldn't help that. I'm running out of energy to keep fighting and pushing. Part of me wants to just crawl under the covers and give up.

[Dobies#1]

Teresa I grew up in Stanton and I know exactly where Denver City is. We do miss West Texas! The people, wide open spaces, and the Texas speed limit are the things we miss and our families of course! The sunsets are awesome there as well. One thing we don't miss is the wind and dirt though! It is definitely a small world! Hang in there. It will get better!
Beth don't give up! We need you!
All of you are in my prayers!

[teresajo103]

I have been a vendor at trade days for years....lol. if you have been in barn g we are coyote flats....home decor and wood crosses. I wasn't there in October because of c diff. I plan to be at the next one if I can get well. I make gemstone jewelry. My sales are awful for this year. Oh well....it's a new year and things are going to be better. I am glad to know you are from down here.....and I am sorry we met like this.

[getwellsoon]

Just to give you all hope I relapsed over and over, was hospitalized, had horrible IBS, colitis etc. and finally after 3+ yrs. am almost back to normal GI wise. It takes so much time for some of us. I have lots of other issues but none was as scary as CDiff and its recovery. Hang in there, all of you. I firmly believe they are on the cusp of a cure or vaccine for it and we will all be first in line. They have made tremendous strides in treatment and research so the answer is out there. I pray this is the year. Love to you all.

[Dobies#1]

Wow Teresa, I'm sure I've seen you at trade days because I went several times before moving. It's a tiny world at times. I too am sorry we met like this. If you would like to talk about anything at all, send me a private message and I'll be more than happy to give you my cell phone number!
Carol, thanks for giving us all hope. I hope and pray they find a cure soon. This is such a depressing thing to deal with.