Does it ever end?

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Rlcross
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Does it ever end?

Postby Rlcross » Sun Jul 06, 2014 1:27 am

This is my second post since I discovered this site yesterday. It is wonderful to be able to talk to people that share what it is like to be sick without any solution. I have had cdiff for a year now I am 37 years old and an RN who is unable to work because of this illness. I have been on every medication available that I know of my last hope is a fecal transplant, but my insurance has been terminated and I have no donor. It is so hard to keep hope when you are dismissed so many times by the physicians you have worked side by side with for years. It is such a horrible feeling to be so young but physically feel like you are on your last life. I have lost 40 pounds and would never imagine an infection would change your life and you would become so debilitated. I have been told it's in my head I need a psych consult I've been told I bring it upon myself due to anxiety I've been turned away due to finances. I also know that there are people a lot worse off then me, but it's hard to stay positive. I have been taken off vanc due to it doing more harm than good since I am not responding to treatment. I've been accused of med seeking stating that cdiff doesn't cause pain. Why would I lie all I want is to have a normal life again without pain in my stomach every time I try and eat. I continuously develop secondary infections including hydronephrosis due to such bad kidney infections I had stents placed to allow my kidneys to empty and assist in healing the infections. I have had two pic lines placed for hydration and antibiotic therapy for my secondary infections. If I go to the er due to uncontrolled pain in my stomach and dehydration I get dismissed as med seeking. I've had two removal of thrombosed hemmroids which is an unbelievably painful surgery when you have cdiff. I would love if anyone out there has any words of advice or even just a friend to say I understand. I am so unbelievably depressed and I feel guilty for it. Is there anyone out there who understands....?

beth22
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Re: Does it ever end?

Postby beth22 » Sun Jul 06, 2014 2:57 am

Re: Will I ever find help.... I answered you in the other post, but you may not have seen it. Best to start a new post anyway....

Postby beth22 » Sat Jul 05, 2014 8:36 pm

OUR STANDARD INTRO: Welcome to the site. Read the first forum, All Users Read This First, and the subtopic, Guidelines for Posting to Our Discussion Boards. (Note limit on posting length.)Read Dr. Borody’s article and topics in CDI -- C. Diff Info –- Formerly FAQ, including Tests, Hygiene Tips, and Nutrition. Also read The C. Diff Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 70%) recover with one or two rounds of Flagyl or vancomycin. A small percentage do not. Most people eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. (See FMT Information and Treatments.) Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See CDI –- Antibiotics Most Likely to Cause C. Diff/Antibiotic Resistance.) Some people tolerate them; some develop C. diff again. (See Dr. Borody's article.) Don’t take medications for C. diff unless you are tested. (See CDI –- Tests.)

For further information, see http://www.peggyfoundation.org/ and several other support groups on Facebook. Also, visit reputable medical sites, such as http://www.mayoclinic.org and http://www.webmd.com.

This is a support site, not a medical site. We can’t give you medical advice, but we can tell you what did or did not work for us. No one will understand exactly what you're going through unless they've had this unpredictable disease. The best protection, for you and others, is thorough hand-washing and good overall hygiene.

Although we know how devastating C. diff can be physically, mentally, and financially, this is not a fundraising site. We rarely ban posters unless they are verbally abusive, combative, or insulting; use inappropriate language consistently; or attempt to sell something through the site, in which case we usually issue a warning first.

Again, welcome. Remember, the odds are in your favor.

END OF INTRO.

You are not crazy. You have been dealing with a horrible illness and not seeing many results. Doctors love to blame the patient when they can't figure out what to do. Not all of them, of course, but some and it seems like you have one of those doctors. Where do you live? Maybe there are some doctors who specialize in c diff nearby. I kept relapsing all the time I took vanco as well and it did a lot of harm to my GI tract. I still have SIBO and PI-IBS from it. What finally cured my c diff was a stool transfer. Many places and doctors are doing them now. When I first had one in 2008, not many doctors were and I had to travel out of town. It might be your best option. Have you tried Dificid? That medication has helped some people who did not respond to vanco.

getwellsoon
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Re: Does it ever end?

Postby getwellsoon » Sun Jul 06, 2014 6:23 am

You have come to the right place. We understand you and know what yo are going through because we are or have been going through the same things. You just haven't found the right dr. yet. Please don't give up, you will get well. It takes a lot of time. It took me over a year of Vanco and other meds to just get rid of CDiff and now I suffer with horrible IBS. It is only in the last few months I feel some better but still get knocked for a loop if I pick up any kind of bug. It goes straight to my bowels and sends the IBS into overdrive yet again. Are ;you treating your symptoms? Have you had a test recently. I think I would get the CDiff test first and go from there. If pos. have you taken Dificid? Its what finally cured me. Its expensive but they have a patient help program so if you qualify you could get the med for free. If neg. you need to treat the lingering symptoms from the Cdiff. Any competent Dr. will agree that you can have these symptoms for years. Find a good GI or ID dr. I would also investigate the FT or the home enemas. Your donor will have to get tested but there is also a place that is listed on this site I believe that has donor feces. I will keep you in my prayers that you get the help you need. I took Advil for the pain or Tylenol, both help and also Pepto. Let us know how you do, we care and know how you feel.
CAROL

ResearchGrandma
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Re: Does it ever end?

Postby ResearchGrandma » Sun Jul 06, 2014 11:35 am

I agree that you should get a C. diff test (DNA based like pcr). You may very well be still positive, since you had to take antibiotics for other infections. Difficid sometimes works when vancomycin fails. You mentioned you don't have a stool donor - check out the "media" section here. There is a post from March that describes a stool bank in Boston that will provide tested stool samples for your doctor to use for a modest fee (think it was $250). Since you were apparently dropped from your workplace insurance, have you explored any of the options available with the new healthcare system?

AllisS
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Re: Does it ever end?

Postby AllisS » Sun Jul 06, 2014 11:46 am

The dismissive treatment that you describe having received is inexcusable. That said, a lot of MDs and other medical practitioners resort to this behavior when they do not have a ready answer. I think you would benefit immensely from having a patient advocate. There are folks who now do this for a living; they are sometimes called healthcare navigators. But they tend to charge a lot, and you mention that finances are an issue for you right now. Do you have a family member or friend who could accompany you to one or more of your appointments? You have the absolute right to take someone in with you to participate in the consult, even if just as an extra set of ears. A doctor is less likely to blow you off when another person is present. Whomever might go with you, if you choose that route, should be smart, articulate, and, ideally, healthcare-savvy. Best wishes for your recovery.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Rlcross
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Re: Does it ever end?

Postby Rlcross » Sun Jul 06, 2014 2:19 pm

Thank you so much for all of your concerned and helpful responses I was so excited to see if there was any advice today. I have never posted anything ever before so pardon me if I am not the greatest. To answer some questions I did drive to virginia to another hospital last week and again tested positive for cdiff. The last course of antibiotics I had was in January and it was gentamicin. I finally got an appointment in Virginia with a GI on July 16 th. I was told he does do fecal transplants I guess I just have to wait to see what it is all about. I guess I am just worried he won't treat me because of the insurance problem. It was so unbelievably uplifting to hear feedback regarding my situation. I have tried to get assistance but continued to be turned down because I am technically still employed just on FMLA they offered cobra but without income how do they expect you to pay it? All these holes in our systems for people that are sick have given me such an eye opening view I can't even begin to tell you. Thank you so much for your words of kindness and I will also say a prayer for everyone else who has to battle such a horrible illness that is such a unspoken and unrecognized part of our society I had no idea so many people were in the same situation. I wish there was more we could do for each other .... Thank you!

Rlcross
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Re: Does it ever end?

Postby Rlcross » Sun Jul 06, 2014 3:07 pm

I had ten days of vanc in end of May beginning of June then I tested positive again. I had a colonoscopy about two and a half weeks ago on a Wednesday the dr said there was nothing wrong with me other than diverticulosis. I started going to the bathroom a lot again that Saturday I called him for four days he wouldn't return my call so I drove to a hospital in Virginia that following Wednesday and tested positive again. They gave me I've vanc and flagyl but said no more antibiotics after a few scans he said they were eroding what I have left of my intestine. The colonoscopy he could only do my large intestine he said he couldn't get in my small because I am a thin person and they were to inflamed scared he would nick me.my current symptoms are loose to watery stool if I eat. If I don't eat I feel the need to go but there is nothing there obviously cuz i haven't ate anything. I have pain in my stomach mostly right upper quad and heart palpitations. I run a low grade fever and due to the long infection I have been diagnosed with sick hyperthyroid which means my tsh is in hyperthyroidism but my t3 and t4 are normal. If I eat or drink anything my stomach literally within 5 to ten minutes starts making noise. If I have to leave the house that day I don't eat.,I only eat if I know I can stay home.

Rlcross
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Re: Does it ever end?

Postby Rlcross » Sun Jul 06, 2014 3:09 pm

I don't want to be to graphic about my symptoms in the bathroom but if you have had it you know what the bathroom situation is I also always test positive for blood occult.

pinkangel
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Re: Does it ever end?

Postby pinkangel » Sun Jul 06, 2014 4:18 pm

Have they put you on thyroid medicine? That would be methimazole tapazole or PTU? I too had a bad cdiff infection and it reactivated my hyperthyroid/graves disease that has been in remission for a long time. I ended up going up to 30 times a day water for a while and was in extreme pain and it hurt to move. had the fmt so I did not understand why symptoms were so bad. I kept going to er and docs and they could not figure it out. Finally a teaching hospital er agreed to run my thyroid labs and tsh was just under levels T3 and T4 were normal. He agreed to give me tapazole and my D was 95% better within the week and the pain as well. I also had heart palps and arrythmias. Those calmed down with the meds. You should probably ask to be put on thyroid meds to at least see if that can control some of your symptoms. It was awful so I know what kind of things you are going through. I think the cdiff causes an autoimmune reaction in some of us and that can cause all of these secondary illnesses and symptoms.

Rlcross
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Re: Does it ever end?

Postby Rlcross » Sun Jul 06, 2014 6:51 pm

That is very interesting you say that because I have had two different dr's try to put me back on melds and I went with the third dr that said no more antibiotics. I had one dr try and put me on 6 more months of vanc! It's so hard to try and know what to do because every dr tells you something different. I have learned more from reading peoples stories on this site then what the dr has ever told me. I guess we will see what the next dr tells me on July 16th. You guys are wonderful!

Bobbie
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Re: Does it ever end?

Postby Bobbie » Sun Jul 06, 2014 10:17 pm

I am so sorry about what you are going through but am not surprised. Docs. often don't like "challenging cases." My first bout of C. diff. was l993-l997. Even Mayo told me I didn't have C. diff. (I was on Vanco. when I went there and the docs. knew it but when I tested negative, they said I had "just IBS." BS, I knew what I had.) I did get some satisfaction when I finally tested positive on one of the toxin tests - known for not being accurate. I wrote the doc. (a dismissive, rude young s.....t) a letter and enclosed my test result. He called me ASAP and apologized. I finally found a local doc. who helped me- but his treatments left me with "real" IBS. After my last bout with C. diff., he said he could no longer handle my case (after almost 20 years). Surprise, surprise.

You are not a "head case." You have C. diff. You are young and you will eventually recover. Follow some of the great suggestions the people on this site have made.

Also, see Links - contact Catherine Stone Duff with the C. diff. Foundation at CDuff@thefecaltransplantfoundation.org. She can help you find financial help with a FMT.

Best to you. I know just how you feel - betrayed, sick, stupid, and guilty. You are none of these - except the first. We will support you. Hang in there.

getwellsoon
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Re: Does it ever end?

Postby getwellsoon » Mon Jul 07, 2014 6:42 am

Everyone gave you great advice. If you are testing pos. for Cdiff and are having those symptoms you need to be treated with more Vanco or Dificid. I would also tell Dr. about what PinkAngel suggested. The thyroid being off can make you feel horrible. I hope you can get the help you need but waiting until the 16th isn't a good idea. I would try to get an earlier appt. Good luck to you and let us know how you do.
CAROL

Rlcross
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Re: Does it ever end?

Postby Rlcross » Mon Jul 07, 2014 9:03 am

Everybody has been so wonderful with the support and advice I have received. I am so thankful to have found so many people who genuinely care! My appt on the 16 the is actually very soon for the dr I am seeing I only got that appt because the er doctor in I saw in Virginia called him and talked to him about my situation normally they book months out I've tried baltimore and Hopkins they are all months out. I am so grateful for your amazing support! Oh and I did ask my pop about thyroid medicine and he said no.

Bobbie
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Re: Does it ever end?

Postby Bobbie » Mon Jul 07, 2014 11:59 am

The l6th isn't far away. Glad you got in earlier.

beth22
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Re: Does it ever end?

Postby beth22 » Mon Jul 07, 2014 6:05 pm

If your new doctor is willing to do a FT, that might be your best bet. Before a FT, patients are usually put on vanco anyway, as that is part of the protocol. I would definitely see about those thyroid symptoms. I have Hashimotos thyroiditis and sometimes my thyroid spews out too much hormone and it definitely affects my GI tract. If you can wait with the antibiotics until you see the new doctor, fine. If not, and your symptoms get worse, then you might consider taking vanco or Dificid and talk to the doctor about doing the FT.


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