so sick of being sick

[carleym]

hey, just here to vent. and i apologize for my grammar and spelling. the last couple of months have been insane for me. i am a senior in high school and i am missing it all. i was out for 2 months when i was diagnosed and multiple days and weeks afterwords. i was diagnosed with c-diff around thanksgiving of last year and it has been a crazy battle, between relapsing on Christmas. they could figure out what was wrong with me due to the fact of how old i am and its not common for my age to get it. But apparently i had another illness called esbl (don't know alot about it ) but i have it for months before the hospital told me. apparently they forgot to call in the results. i was so mad!!! considering it was the reason i got c-diff because they put me on multiple medications for uti's that were cause by the ebsl. so anyways i have lost an extreme amount of weight, to the point that i look anorexic, and i am called it often, but im not no worries. i lost 21 pounds in 2 weeks when the c-diff got bad, and ended up in the hospital. as of now i lost 28 pounds and dropping, its disgusting. and my starting weight was low to begin with, i was always slim and fit.

i am constantly worn out from lack of calories, cause i am constantly sick to my stomach. i am so sick of not being able to eat food i crave and need. i had problems with lactose and irritable bowl syndrome before i got c-diff, and that has worsen alot. Also like any teenager i lived on junk food and candy, now its pasta and chicken, its gross. In doesn't help i am a picky eater either.

my senior prom was this weekend and i was getting sick in the middle of it, it was terrible. just everything that has happened to me i just cant handle. between my goals and dream being taken away, and losing friends, and my life its been to hard.and being cheated on the the hospital, really nice of him huh? but for 2 years i have planned on going into the military, it was my dream to help people and fight for the people i care about and to be apart of something more than myself and now i no longer can go for simply the reason i cant eat normally and i dont meet the weight cut. also i have been an athlete all my life, and my senior year, my last year to play sports,and i cant play. i had to watch my team on the sidelines, it was depressing. MY whole life, and my families lives have been turned upside-down. Its seriously getting to me to the point of giving up, i know i cant give up but everything is just going so wrong. and as soon as i start getting better i get sick again. im am getting retested today for c-diff. im to the point where if i have a headache i freak out thinking im getting sick. i hate this, just want it to be over.

thanks for listening

[amyc]

Hey Carley. Sorry to hear your senior year has been so screwed up by C diff and by physician negligence to notify your family of the bladder issue. I'd guess you might have a lawsuit there somewhere...but don't call the ambulance chaser guys who advertise on TV unless you live in Las Vegas, and then Glen Lerner really may be the way to go, or so I've heard. Anyway, beyond the bladder problem (what is it again?) you can get rid of C diff by doing the fecal transfer. Do you live in the US or Canada?

Have you been on flagyl, vancomycin, dificid, pulses/tapers/whatever?

I'm 44 and saw a doctor for asthma yesterday, and when I mentioned I'd had recurrent C diff he looked at me funny and said, "where did you get THAT?" like it was crazy that an otherwise healthy middle-aged woman could catch C diff. He's a good doctor, but it seems an awful lot of them just don't know how prevalent this infection has become. Have you seen gastroenterologists or infectious disease specialists? If not, you definitely need to get your regular doctor to find you a good one/ones of those.

[carleym]

yeah i was on vanco and flagyl the flagyl didnt work on my so i went to vanco for both treatments. and yeah i have seen every doctor out there from kindeys , gastro, infectious disease, and more. the problem i have is that i am technically a minor, so finding doctors that would take me was really hard. because its so rare for a teenager to get this! like my doctors knew nothing about it unitl me. so i have to travel far for most of the doctors. and another issue is when they treat the esbl it brings back the c-diff because it antibiotics. so it is an on going cycle sadly. and with the lawsuit my mom just gave up due to the fact we need the money for the medications and bills from the hospital.

[Kathy George]

First of all I’m very sorry you have to go through this upheaval at such a tender age. C-Diff can strike individuals of all ages; any person can become a victim of this horrible beast. Antibiotic usage is usually the main ingredient that plays havoc within our intestinal tracts. I know you feel your life is up side down at the present time. Perhaps, a full recovery is in the near future. You didn’t mention how often you have been placed on antibiotic treatment for the ESBL. However, many doctors use Flagyl or Vanco combined with other antibiotic therapy to ward off the repopulation of C-Diff spores during medication therapy. There are other treatments out there for C-Diff rather than medication therapy; fecal transplants have been done with much success. I was cured by Dr. Borody’s Home Enema Infusion Therapy. You can find info regarding this method on this site under the category “Treatments.” There is a list of antibiotics that are most likely to caused C-Diff on this site as well. You can find that list under CDI- C.diff. info. - Formerly FAQ. Then click on Antibiotics that are most likely to cause C-Diff. It would be advisable to have your parents review this information. I drank Ensure when I had active C-Diff. It helped with the intake of calories. Feel free to visit this site at any given time. We are all here to give you support and offer our opinions. Take care now and please keep us updated.
Kathy

[Kathy George]

There is a Vanco tapering method that has a high success rate. Your parents may want to solicit feedback from your doctor in regard too this therapy treatment. A family doctor doesn't cut it, it would be advisable for your parents to find a good, well-versed GI or ID specialist. Your parents can do the leg work for you. Take care and keep on posting!!!
Kathy

[beth22]

You aren't the only teenager that had c diff. There was a boy who was 17 and he beat it and there are even babies and toddlers who have had it. Have you ever tried Dificid? That is the new drug for c diff that came out last year. You might want to talk to your doctor about it. There was also a teenage girl who was in the hospital and about to lose her colon because of c diff and she received an ng stool transfer because her colon was so swollen that a colonoscopy was impossible to do. She got better and you will too, but you have to stay positive and not give up. I know it is hard - I've been there myself and am still struggling with multiple health issues. If you are a senior, then you are almost not a minor. We've had college students post with this as well.

I would talk to your parents about possibly doing a stool transfer. You didn't say which state you lived in or if you are from a different country. There are doctors here in the US who do fecal transfers. I would maybe ask about the Dificid first. One man on the site had something like 11 or 12 relapses and has had no more after taking Dificid. It works for some and not for others. Some people have had success with a vanco taper followed by Xifaxan or Alinia as a "chaser", so there are other options out there still.

Also, as Kathy suggested, print out the list of antibiotics that are less likely and more likely to cause c diff. I don't know anything about the urinary tract problem that you have, but I know that Macrobid works for some UTIs and is low risk for c diff. Do your doctors run cultures on the urine to see which antibiotic works? Ask them to tell you which ones and give them the list so they can see which ones might be less likely to make you relapse. Is there any other treatment for your condition other than taking antibiotics?

Anyway, let me also give you the official introduction:

Welcome to the site. Read the first forum ALL USERS READ THIS FIRST and its subtopics - especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DEISCUSSION BOARDS. They will guide you in using the site and answer some of the most frequent questions. Read Dr. Borody's and Dr. McDonald's articles and some of the topics in CDI - especially Hygiene, Nutrition, and Testing.

The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recovers, however, unless other factors are involved such as severe health problems or advanced age. If antibiotics contributed to your c diff, be careful about taking them again. (See CDI - Antibiotics). Some people can tolerate them without a problem and others develop c diff again. (See Dr. Borody's article). For further information see http://www.peggymemorial.org and the Mayo Clinic website.

[Bobbie]

carleym,
Sorry poor health has wrecked your senior year. I've worked on this site for over l3 years and have seen a lot of posts by previously healthy people your age. This should be a fun time of your life and instead it's docs and medical problems. My younger son always had a lot of health problems - including C. diff.; I've also had this awful infection. I agree - doctors should know more about C. diff. - many are "clueless." Everyone on this site has lost friends and had even family become tired of our health problems. Only people who have had C. diff. understand how you feel. Look through the forum CDI for some ways to cope.

You are an athlete so you know about winning and losing. You never win by giving up. You will eventually get well. Concentrate on gaining weight and working out. I am 7l years old and I do high impact aerobics 4 times a week. If I can haul myself in to work out, you can, too. Start slowly and work up.

You made the statement "I am getting retested today for c-diff. im to the point where if i have a headache i freak out thinking im getting sick." This is common for all of us - it's our worst fear. You are not alone. We have a lot of females and males post on this site - doctors, firefighters, athletes - we all are terrified of a reoccurence. I had one at Xmas (I had to take an antibiotic or risk kidney problems) and developed C. diff. after years of being "OK" (except for IBS and other health issues). Dec. is a bad time of year for me anyway for many reasons and I really "wigged out" but made it through a day at a time - sometimes an hour at a time.

You also made the statement, "I hate this, just want it to be over." We all understand your desperation, but that statement worries me. Please see a counselor or talk to someone. Some of us have taken anti-anxiety or anti-depressive meds. to help us get through the worst of this. There is no shame in it. C. diff.is a particularly nasty, isolating disease and one that does not inspire sympathy.

You do know about cheaper Vanco, don't you? There is info. on it in CDI and also an ad for it on the home page - bottom right hand corner. I, too, thought about taking legal action and was in the legal field at the time (a paralegal). It's a difficult thing to do; if you hire an attorney, (it sounds as though you already have) make sure he/she takes your case on retainer (you don't pay unless you win; then he/she takes "a big chunk."

Don't forget - you are not alone. Please post again and let us know how you are doing. Best to you.

[carleym]

yeah i live in the america. and they brought up the fecal transplant but they said they dont want to do it right now. and what frustrates me the most is that the doctors i have dont fully understand everything with the c-diff or esbl. like i barely know what esbl is i just know i have it and it caused the c-diff. and i cant go to the GI doctor often considering i was lucky to be seen from them at all because i am not 18. they only excepted me because he was the doctor who saw me in the hospital, because he is the main GI doctor there. so they say to go tot the peds. doctor first and they dont know alot on the subject. so everytime i get sick they are culeless. Also with the medication comments, my insurance doesn't cover the vanco and the flagyl didnt work on me enough, and the only way they cover the vanco was if i was in the hospital when taking it. so the vanco was like $800 for each session, out of pocket. and so far i have only have c-diff 2 times over the last 6 months. the relapse was shorter than the first time i had it. but now they think i have it again because symptoms are coming back and im loosing more and more weight from it. and with the whole lawsuit possiblity, my parents decide to not start that because of cost and knowing its not going to change my health. so they didnt even bother with it. i do have to say that this website has made me feel so much better knowing everyone's case and knowing that its not just me. my doctors made it seem like its really rare for teensto get this but from seeing this its not true really. its a breathe of fresh air to know this.

[beth22]

You can get the liquid form of vanco and it is WAY cheaper. You might have to have a compounding pharmacy make it up for you, but a lot of regular pharmacies can do it too. As far as Dificid being only for adults, there was a girl who just got it, but she was 17. I don't know how close to 18 you are or if the doctor would be willing to prescribe it for you. If vanco is not covered by your insurance, then Dificid probably would not be either though. Your best bet would be either the liquid vanco or the generic form that is now available from what I understand.

Af far as lawsuits go, if it is malpractice or personal injury of some sort, the attorneys who litigate this do not charge unless they win the case normally. You have to look for an attorney who works on contingency. You pay nothing unless you settle or win the case. I would say to make some phone calls and present the circumstances to some attorneys and see if they want to take the case if your parents are interested in pursuing that. I know that in most states there is a statute that runs - you have a certain amount of time to file, but if you are a minor, it is also different, at least in my state it is. It doesn't hurt to call and ask if you feel that your condition was brought about by some kind of negligence or malpractice.

[natalyjac]

Argh, my reply evaporated! I will try to recap.

My son was diagnosed with cdiff at 16. We were told 'don't worry, kids get over this real quick'. Well, he relapsed two on Flagyl, but a 6 week vanco taper took care of it and he has been medicine free for a year. (Knock on wood!) The doctor prescribed liquid vanco and the pharmacy at the local hospital compounded it for us- it was very reasonably priced.

C diff is so poorly understood by many, so it is hard to find people to talk about it with. I am so sorry you had to go through this your senior year of high school. However, you can and will beat it. You do need to find a doctor that will provide good follow up and properly advocate for you to get the right medicine. C diff is a pretty straightforward test, and there are many treatment options available. There is no reason you should be made to wait and wonder. Find someone ASAP that can help you. We had great luck with an infectious disease doctor, but I know many found relief from a gastro. It is ridiculous that you aren't getting appts because you are a minor. There is a reason why there are pediatric specialists in infectious disease and gastroenterology.

Focus on getting your body back and try to find things you can eat. Even if it means drinking Ensure, do what you can to get your body stronger. I used to make my son Kefir smoothies with protein powder to help him gain his weight back,and he also took primadophilus reuteri (probiotic).

You can and will beat this, one day at a time.

Kris

[arose]

Hi there.
You and I are a lot alike and I hope I can lend some reassuring words. I am 20 years old but was 19 when I was diagnosed with c.diff, but I was also struggling with some other medical issues at the time of my diagnosis. I was also very slim before the c.diff and lost a whole lot of weight too. I know how discouraging it can be to feel like you keep losing weight. I, too, was very self conscious and felt like I had to hide my body in fear of being called anorexic. You have to know that this isn't your fault. You will get better and you will come out of this fight stronger than you ever were before. I missed out on a lot of things I could have been doing this year and my grades dropped a little bit. I know how hard it can be to feel like you're not getting the most out of your school experience. Just remember that there will always be more fun to be had in the future!

Like the others, I want to suggest perhaps asking your PCP or a psychiatrist for a prescription for an anti-depressant or anti-anxiety medication. I am on Zoloft (an SSRI) and it really has helped with my anxiety. C.diff brings anxiety naturally and there is absolutely no shame in that. You'll find that a lot of us on this board are very anxious and we all lose hope once in a while. But it will get better.

You can private message me any time with any questions or if you want to rant. I know how weird it is for doctors to be shocked that someone so young could get c. diff. I've been there!

You'll find that this board is wonderful for support and to take away some of the loneliness of this disease.

Chin up! Keep fighting.

[Suezer]

If you live near a hospital they usually have a pharmacy within, this is the most likely place to start, ask about getting the liquid Vanco there. It took my ID Dr. simply making a call to the nearest hospital pharmacy to where I live. Then the pharmacists there learned how to compound it via telephone from a bigger hospital pharmacist. It can be done, and will save you tons of money. Now my hospital pharmacy is making the liquid for many others and all because of my ID was persistant.
Do look into something for anxiety. The colon has as many nerve sensors as the brain. Calm one and the other benefits. Small doses of xanax put my UC in remission years ago, and now helps me with my c diff issues.
Oatmeal with applesauce saves me on bad days.
I believe I am colonized/ a carrier. I have pulsed Vanco for 3 years ,had 2 recent relapses, but once its under control, it is possible to feel better. I hope your experience is much shorter.Just make your Doctors work for you/listen.

[gm37]

Carleym,
I am so sorry that you have been battling c-diff during your senior year in highr school! I can't imagine how awful that has been for you. When I was in high school (in the really olden days), all I worried about were zits, my big butt, and which boyfriend I would dump next!
I noticds that 84 people have viewed your notes. That means there are lots of us who can empathize with your situation. You have been given some good advice from some experienced c-diff sufferers.. I hope some of it will help your doctor to care for you.
You have so much going for you....your youth, your athletic body and your fighting spirit. It is a tough battle, but you will come out the other side, healthy and active again. Look ahead to that time.
God bless you.
Anne

[AThurston]

Carleym, I too am sorry to hear you are going thru this c diff storm at your age. C diff has no pardons and does not discriminate,age,male,female,black, white, etc... I hate this for you.... I have been with the beast for 17 mos and now on a taper of vanc. Do seek assistance from the hospital regarding your meds and expenses. At the least they will refer you where you can get assistance. I would ask them to pay for treatment ( 1 mistake has made a big impact on your life), least it wouldn't hurt to try. Hospitals have alot of access to sources to assist patients.
I don't remember seeing if you are on a probiotic? Probiotics are highly recommended in treatment for c diff. Do you like yogurt? Alot of us that are lactose intolerant can handle the yogurt. I also used frozen yogurt, frozen fruit and soymilk to make smoothies. A good multivitamin may help as well.
I see where you were with IBS prior to c diff, I ended up with PI IBS, it took a couple meds and then GI started Cymbalta 60mg daily and it helped, it is an anti depressant, there are some anti depressants in low dose that are effective for IBS. I know another pill, another financial burden... We all feel that too, you are not alone, we are here for you... I agree with the others, your athletic,a competitor and a very intelligent gal for acknowledging your feelings and expressing them. Hang in there my dear, Bobbie hit it straight on," You never win, by giving up." Please keep us posted.