New Member - just ranting

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
rprice76
New User
Posts: 5
Joined: Sat Apr 11, 2015 10:56 pm

New Member - just ranting

Postby rprice76 » Sat Apr 11, 2015 11:34 pm

Hey all!

So I found this board just through a google search. The internet being what it is, I figured I'd find a support group for c-diff. So here's my story.

Last year (August 14) I went in to have a procedure done on my spine. In-and-out stuff. Overnight stay was all I needed. Well, it turned into three, which turned into 10, which turned into 4 total surgeries due to a Pseudomonas infection. Well, my final surgery was the day after Christmas (Dec) after being admitted to the hospital with severe pain and wound drainage.

I went home a few days after new-years and returned to work after almost 5 months. I went on a long-term dose of antibiotics for my Pseudomonas infection after failing to fight it off three times.

Well, things went to hell.

I started having diarrhea early February (around the 3rd or so). Then on the 9th, after non-stop issues I got a positive test result of C-Diff. Knowing my problems with the Pseudomonas infection he prescribed Vanco, but my insurance refused, even when it was insisted by my doctor. So I went on Flagyl on the 10th. By the 13th, I was in so much pain, and so miserable I just wanted to die. Finally the insurance co relented and let me go on Vanco. That was in February.

It's been months no. At the end of March my doctor cleared me for work as I was somewhat mobile. He cautioned me on my gut as I am STILL on Vanco. I've been placed on a combo of Cipro and Vanco. Cipro for the remaining infection in my bones, and Vanco for the C-Diff. The doctor wants me on both for a year. I think its really aggressive compared to what I've read online, but I'm not a doctor.

Recently I've been having recurring stomach problems. Gas, bloating, pain, etc. The docs have checked me out but just assure me this is normal at this point. I guess I have C-Diff really bad, and my body, for some reason, does not fight bacterial infections well. I've been getting depressed lately, and am turning to these boards for advice / information as I continue this fight. This last week I really just bared my soul to my mom (she's nearing 70) and it was hard to watch her tear up. It's been YEARS since I was really sick (I was a sickly child with Scarlett Fever, Strep, etc - you name it).

I'm lucky in that my SO suffers from severe Crohn's and he has my back and sympathy, but it's still hard to deal with. His Crohn's is contained by medication and he has very little side effects. He was suprised when I mentioned that I envy him his good health (gut wize). I just keep suffering from constant nausea, pain, bloating, etc. It just sucks. My appetite is all but gone, and I've lost 20 pounds (down to 150). I keep up the mantra that "this too shall pass" but it still is one sucky disease!

Oh an just FYI: I'm 39, College Educated, and live in the AZ South West

Anyway - hope all of you continue to do well. Be strong, and catch you all later!

teresajo103
Regular Contributor
Posts: 244
Joined: Thu Dec 04, 2014 5:34 pm

Re: New Member - just ranting

Postby teresajo103 » Sun Apr 12, 2015 1:10 am

I am so sorry you are suffering so badly. You have you found a group of really good people.that truly get it. We are all here for the same reason.....cdiff is not our friend. You have been thru some rough stuff. I was diagnosed in late September....relapsed several times...then in Feb I had an fmt done. I still have some pretty rotten days.....but..I have had some good ones too. Getting over cdiff is not easy....but you can do it. My worst days I spend crying .....but the folks on this site have held me up and helped me survive. One of the moderators will get you a welcome letter soon. Meanwhile, welcome to.our world....sorry you have to be here....but glad to have you and nice to meet you.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: New Member - just ranting

Postby beth22 » Sun Apr 12, 2015 2:29 am

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Sorry for all you have been through. That is a lot and you seem to be handling it very well under the circumstances. To answer your question, sometimes people do have to take vanco for a long time. Since you are on an antibiotic for the other infection, you need some protection. I found that the longer I took vanco, the more irritated my GI system got. Are you taking any probiotics? Those help to a certain extent. You have a Mayo Clinic in Arizona. Have you gone there? I have read they are very good with c diff. We have had some posters who got stool transplants there or other treatments. It may be worth it to get a second opinion there about how to handle your situation. Are you on full dose of vanco or just a maintenance dose?

rprice76
New User
Posts: 5
Joined: Sat Apr 11, 2015 10:56 pm

Re: New Member - just ranting

Postby rprice76 » Sun Apr 12, 2015 10:59 pm

Thanks for the intro letter, I appreciate it!

As far as how things are...I'm on a pretty strong dose of Vanco from what little I understand (again not educated or a doctor). It's an oral solution in suspension. I think the bottle is 100ml/25 and I'm on 25 ml four times a day for the next 11 months - the bottle gets refilled every two weeks. What kills me the most is that this was a complication of a complication. I was just supposed to be in the hospital for a day or two, followed by a few weeks of recovery, and then back to real life. The first surgery didn't get completed right. The second - it got infected, followed by the third, and fourth. The last was a MAJOR re-do of the first, and a clean out, but I was still infected with Pseudomonas which got into my spinal column / bones and then due to the "cure" for that (can't recall the IV drug) I got C-Diff.

I am NOT an advocate of heavy dosing of antibiotics due to the problems with strain mutations and drug resistance. I'm kind of irked at the docs about this, but I defer to their judgement. My degree is in IT. I expect my customers to know what I'm doing with their systems to clean them, so therefore I extend the same courtesy to the doctors who are going to "clean my system."

I AM on Pro-biotics. Can't remember the brand, it was recommended by my doctor, and is "Extra extra strength." At first I doubted them, but the longer I'm on them, the better I am (sometimes). Overall I am better, but I have "relapse days." Weds-Sat for me this week. Today is Sunday and I actually managed a good lunch AND some dinner - light pasta and some just tea and toast for breakfast.

I think what is GOOD is that my co-workers, being the techies they are, had never heard of C-Diff. I called and let them what I had as they are all close friends and I know how infectious this thing can be. They ALL did research, and I get advice sometimes from them every day on what I should be doing / not doing. At least my bosses also understand when I can't do work due to this bug. There are days (Weds-thurs this week) where I just clutched my tummy and stayed in bed. Today - I ran two trips to the store, cleaned my room, got laundry done, and read all afternoon without feeling like crap! So here's hoping for a good monday!

What is BAD though - I am a techie - but my hobby is working on classic cars. I have a few of them. I haven't been able to touch them in months as its either my back killing me (Pseudomonas as an Osteomyelitys pathogen SUCKS) or I'm not feeling well in the gut. ONE day a few months ago one of my best friends helped me get one of my cars going. He didn't get it but it really was one of the best days I've had in a year almost!

Thanks again all, you're a great resource!

Ryan

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: New Member - just ranting

Postby Bobbie » Mon Apr 13, 2015 12:32 am

Ryan,
I had osteomylitis in my jaw - dental surgeon screwup - and know how painful it is. I was on IV Vanco for 7 or 8 weeks - along with oral Vanco as I had c diff at the time,

Altho IV Vanco was inconvenient I was able to work most of the time. I had a treatment in the morning, flushed the IV, drove to work, worked late and drove home and repeated the treatment.

Best of luck to you. Am so sorry this happened to you. Tell your mom hi.i had a child - now 40 - who was chronically I'll, too.
We moms worry about our kids no matter what their age.

rprice76
New User
Posts: 5
Joined: Sat Apr 11, 2015 10:56 pm

Re: New Member - just ranting

Postby rprice76 » Mon Apr 20, 2015 9:10 pm

Hey Bobbie!

Thanks for the encouragement. It always seems like it's three steps forward, and two back, especially when you through in osteomylitis of the spine. I'm seriously considering a malpractice suit as he botched surgey and caused not one, but two infections. In fact that hospital was fined for causing high levels of preventable diseases (in point of fact, pseudomonas and C-Diff).

What is also a pain is I live in Rural Arizona. The closest compounding pharmacy is in Tucson which is a 90 mile one way trip (180 total). So today was my day to go get my oral vanco and they forgot to fill it. They had to call in the compounding pharmacist and I didn't get it until 4pm (I got there at 10). My insurance won't ship (so they claim). I may just have my mom pack and ship it for me as I can't really sit for long periods with my back the way it is.

Well sorry for being a grumbler.

Ttyal!

Ryan

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: New Member - just ranting

Postby NanciT » Mon Apr 20, 2015 10:26 pm

Hello Ryan,
Reading your story....so difficult following a complication from surgery! You mentioned the doctor put you on the Oral Vanco, are you seeing a GI Specilaist? Are you now clear of the post surgical infection?
I ask about the doctor because if you are not feeling better, you may consider a 2nd opinion with a GI Specialist.
I myself am now seeing my 3rd GI specialist and I live in an area where we have alot of doctors, just not many that are that knowledgeable about C Diff. I was on and off Vanco and a Vanco taper and then was put on DIficid. Finally, I am 6 monhs Post C diff after a Dificid Taper. This treatment was over 10 months.

It sounds like you are doing a bit better, for the nausea if it continues I used"Sea Bands" . They are wrist bands with a pressure point which you can get at any pharmacy. I wore them for months.

Hope you are feeling better soon!

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: New Member - just ranting

Postby Bobbie » Mon Apr 20, 2015 11:53 pm

Ryan.
I don't know which is worse - osteomyletitis or c diff. If you do consider legal action, make sure the attorney takes your case on a contingency basis. I considered the legal route and was a legal assistant so knew a little about the system - if you think the medical profession is a minefield, wait until you see the legal profession.

Get all your facts in order. Because you are young and have a good job and are self supporting, you might have a case. I was older, did not work full time, and had no one dependant on me. In most states, you have two years from the date of injury. I never suggest anyone"sue" unless he/she has proof. There are triply dedicated competent people in every professions - and then there are the others.

I remember the pain of osteomyletitis was horrendous, and of course the pain meds screw up your GI tract.

Your have a lot to grumble about so grumble away.

Keep us posted.

rprice76
New User
Posts: 5
Joined: Sat Apr 11, 2015 10:56 pm

Re: New Member - just ranting

Postby rprice76 » Wed Apr 22, 2015 2:30 pm

Hey Nancy!

No I am not clear of the Osteo infection. In fact it's recurred three times. I'm under the care of an Infectious Disease specialist. They are the ones who diagnosed the Pseudomonas infection as well as the C-Diff. I was on a pic-line for four months for the Pseudomonas infection (can't recall the medication I was on at the moment - but it was a newer drug - very expensive - and tailored for Pseudomonas) as the original hospital treatments did nothing for me (Vanco IV and Cipro). Since Feb I've been on oral Vanco for the C-Diff, and oral Cipro since March for the Pseudomonas. The doctor wants me to continue this treatment for 11 more months.

I hate it. I just hate it. Yesterday was not too bad, today is horrible. No fevers, no vomiting, but well the big D and a LOT of nausea and no appetite. I just called into work for the second time this week.

I went from being a strong healthy 38 year old to a 39 year old who feels like he's 80. Walking from my car to my house is a pain (it's up a lot of stairs - I live in a Canyon), as is just sitting. Now add in the nausea and such and I'm just a wreck. I have a masters degree in IT, I made it to middle management, I am looking to move to senior management in a year. Or I was. When I returned to work a month ago I thought, well I feel almost normal, I bet I'll get better in a few weeks. Now I just hope to make it through the next day. All my hobies are on hold. I can't sit long enough to practice piano (I've played since I was 7 - even studied music in college before changing degrees), I can't work on my classic cars as bending is a problem, and I can't even eat anything I used to love. Its just hell. My mom gets teared up when I rant, so I've stopped confiding in her as I don't want to spread the pain. My partner, he's got his own issues, I don't want to burden him. So...I just deal and rant on here I guess.

*sigh*

Today is not a good day,

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: New Member - just ranting

Postby NanciT » Wed Apr 22, 2015 7:54 pm

I am so sorry Ryan!! The infection has gone on for so long despite all the treatment....you have 2 major things going on! Come here and rant all you want, we are hear to listen and understand. Do you have medication for the nausea? Zofran is given alot and works well, but you can also try the "Sea Bands' I mentioned. I had terrible nausea and also vomiting during the c diff....it is very wearing.
Do you also gave a GI doctor involved? Between the two, they should be able to help you with both the infection and the C Diff. You may want to consult one of you do not have one especially since you are having a terrible time right now. I myself kept searching for the right doctors and getting additional opinions.

I wish I had some words of wisdom for you...wishing you the best

rprice76
New User
Posts: 5
Joined: Sat Apr 11, 2015 10:56 pm

Re: New Member - just ranting

Postby rprice76 » Wed Apr 22, 2015 8:16 pm

Thanks for the advice NancyT.

As far as a GI doc, no don't have one. I doubt I could afford one right now time wise. Right now I have my regular doctor, an orthopedic surgeon, and infectious disease doctor all involved. I'm on a CDHP plan right now, and believe it or not I hit my out of pocket deductible in Feb. Sure that means things are free from here on out, but I just don't have the time to take off work more than twice every two weeks (for meds and for doctor visits - if I made a third visit - it would have to be the same day).

If I miss too much more work I'll either be put on "Casual/Part Time" status, or I'll have to go on Long Term disability. If I do LTD - my life will have to change drastically. Sell the car, sell the house - etc. Or declare bankruptcy and hope like hell I can get on some type of medical plan.

For now I'm forcing myself to go to work even when miserable unless I really can't go (like today).

My partner was on Zofran while he had his own intestinal problems (all gone now) but I didn't think of it. I'll ask my doctors to see if it might work. I also would love to have an appetite again. Right now I eat enough to get by, but energy is flagging badly. At the start of this I was 175. I'm now 159. That since February. My doctor joked that he doesn't charge for the weight loss part of the plan. At the time I almost decked him, but in retrospect he was trying to lighten my mood.

For today the nausea stopped. No more vomiting, and I ate some mashed potatoes. At least it was something!

I'll take a small victory and hope I can get back to work tomorrow.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: New Member - just ranting

Postby beth22 » Wed Apr 22, 2015 9:08 pm

Have you thought of going to Mayo clinic in AZ? They have a c diff program there I understand. You might call and get the information at least to see what it would involve.


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 21 guests