New Here. Diagnosed. Feel Lost

[Spike]

Hi everyone.

I am a 33 year old female. I was put on antibiotic for a uti followed by a ppi for nausea after a host of other problems before the "UTI". I have continued nausea and no more than 3 unformed stools but not watery. This has gone on for a month so I went and saw Dr and they tested for C diff. However, I did not know about testing with a firm stool and sibmitted one. I was constipated due to zofran because of nausea. I test came back positive for agtigen and toxin. In the mean time my doctor put me back on Questran because I have a history of dumping due to gallbladder removal. I take 1 pack a day. I have now only 1 stool a day and just the nausea and fatigue. At this time I opted not to treat. However, I constantly second guess myself. I have been sick with one thing after another since Halloween and now this. My doctor ok waiting not to treat because of the 3 day/3 stool theory. However am I masking this with the questran. I just feel so lost if to WWW or to treat and possibly make worse as in Beth story. I know you can't make medical advise but since I wasn't test right I just don't feel I can make a good decision what to do. I just tired of the fatigue and nausea. Any kind words of encouragement and or advise would be great. I am really starting to feel down since I been sick with everything under the sun the past 2 months. Some days I can function okish and there other day I slammed by the nausea and fatigue. Thank you in advance and great big hugs to the people who have it more severe than I do.

[beth22]

Hi Spike and welcome to the site. You can find more information for new members in the first forum.

I guess it was my story that you read. Yes, I do regret treating and my doctors feel that I probably should not have done so. Questran actually helps to carry out c difficile toxins as well. If you have a low grade infection, it can definitely help. I do remember when I took Questran, it did give me some nausea. I did not take it for very long though.

If you are not having D, I would probably not treat. Vanco gave me more nausea. It doesn't to everyone, but it did for me. Should you decide to treat, I would ask for Dificid as it is the antibiotic that kills the least good flora and targets the c difficile.

When I first got c difficile, I didn't know what it was and it got better on its own. It was not until the following year that I got it back after taking Cipro for an infection.

My doctors have told me that unless I am having D not to treat. Are you sure that the nausea is from c difficile and not from gall bladder issues? I'm not sure that treating the c difficile would resolve the nausea because we have had posters who treated and still were left with nausea.

You could also see an infectious disease doctor for a second opinion or another GI.

[Spike]

Thanks Beth for the reply,

I currently do no not have D because of the one packet of Questran. Would you consider this no D? I am actually almost constipated. Going to work on finding a balance for that.

Tomorrow I am going to have my PCP test my mineral levels. I started boost yesterday and feel better fatigue and nausea wise however still no where close to normal. I wondering if I don't have defincies after being sick for almost two months and not eating and nursing. I do not have my gallbladder anymore and havent had any issues in 3 years.

I not sure if you can answer but I have read if no D then not infectious. I dont know if I can apply this to my case since I was never treated with medicines. I am just so worried as I have a 6 year old and 2 year old at home. I been bleaching the bathroom after my one stool a day and wash my hands like a mad woman.

My nerves are through the roof right now because I feel I dont know if what I am doing to prevent the spread of this and if I making the right choices. I be talking with my doctor more tomorrow.

Thanks again

[beth22]

Using good hand hygiene is what you need to do and you are already doing that. My husband shared my bathroom during my bouts with c difficile and even before when I didn't know I had it. I don't know if you can be contagious with formed stools. Probably if there are spores you can be, but any time anyone uses a public toilet, you are already exposed and to much more. I would not worry about your family getting it as long as everyone washes hands. It is actually pretty rare for family members to get it. We have had a couple of posters, but not many at all with the hundreds of cases we see.

Getting your vitamin and mineral levels checked is a good idea. Some are deficient in vitamins B12 and B6, iron, vitamin D and more. Some of these deficiencies can really zap your energy.

[Spike]

Saw my pcp today. She still doesn't think we should treat and I agree but feel deflated to why I still fatigued and nauseated. She ran a full panel of labs on me and check dehydration. I can't seem to get hydrated. If not hydrated by Thursday she going to give me an iv when I have someone to watch my 2 year old. I only have 1 stool a day and have never had watery D. Oh and my HR been high to so we are just trying to figure out pieces of what's going on. She may refer me to a gi Dr but I don't want to go and get pushed on to do meds just because of a positive test. I am trying to stay positive just so tired.

[beth22]

Not all GIs push meds for a positive test. My GI told me not to treat when I had positive PCR, but no D. If yours tries to push, get a second opinion.

[Spike]

Beth thanks for the response. When you had a positive test where you having any other symptoms. If you did how long did it take for you to clear those symptoms? I just don't know how much longer I can feel like this. I dont know how long it takes for nature to take it course and take care of this without D. I asked this question yesterday and my doctor said she couldnt answer those questions. (Insert crying face).

[Spike]

So wanted to update and get support that I can do this. I went and saw a GI doctor thankful he took pitty and got me in sooner than march. They have not figured it out yet. I am still in limbo. I have never had watery D. I just weaned off of questran 2 days ago and my nausea is back in full force with body ache. My bowels are still just 1 a day that is semi formed. They think I maybe having something else going on so I have a cat scan done next week. I am so frustrated because it ruining my life, my kids, and husband. The doctor didn't even think it was the c diff and barely talked about the possibility of it being that. I keep Roy in the back of my mind if no D than no c diff but it seem so hard when I feel like crap. I just wish they could figure it out whether it the c diff, pancrease, my dumping syndrome, just my gut messed up after 3 antibiotic in 2 months, or something else. Just discouraged today.thanks for listening.

[beth22]

The CT sounds like a good idea to start with. I developed chronic pancreatitis after c difficile, so a lot of things are possible. It can also take your GI tract a long time to heal and get back to normal or near normal. I assume they did blood tests for liver and pancreas issues?

[Spike]

The liver looks good with blood test. My pancrease test showed slight elevation in my lipase at 158. Cut off on their test said 140. Amalyase was good. My doctor has not been in at all this week or next so I can't ask any question. I tried and all they nurse said is wait until he returns. So frustrated today. As today has been horrible (since going off questran) I went back on it and things are calming down again a little.

[Spike]

I had a CAT scan yesterday so I just waiting for results. When I came off of questran my nausea and fatigue and "loose" stools came back but not more than 2 a day. I just dont understand why 1/2 a questran packet a day keep symptoms manageable. I now have 1 doctor pushing to treat my c diff test and my GI doctor hasn't mentioned a word about it but that may change after results of test. I still have some slight nausea during the day. I guess I putting the cart before the horse but if I do treat should I do the dificid over the vanco? If it wasnt for the nausea I wouldn't even be questioning this but I just so tired of being nauseated. Loose stool however are not normal for me either.

[beth22]

Questran binds up toxins and carries them out, so it works on c diff toxins as well. I think Dificid is a better drug for c difficile as it kills less good flora than vanco. If I ever relapse again, that is what I would take. Make sure your insurance covers it. Most do now, but good to check as it is a very expensive drug.

[Spike]

Well feeling hugely discouraged. Basically all labs and CAT was normal. So only thing I have is a positive potential c diff culture. My GI doctor had the nurse call me and said he no longer want to see me due to the CAT being normal. No other GI doctor in this practice. He was suppose to be good. Now I am doctor less. I don't even know what to do now. Could be another 3 months before I get in to see another GI doctor. I just don't even know what to do now. Do I jump the gun and treat this? I am so scared. I just have the nausea, some bowel discomfort and, and no more than 3 stools a day when I am off of the questran. The questran is keeping to 1 time a day right now.

[beth22]

I would ask around and see if you can find another GI. Is there a university hospital anywhere near you? They usually have good GI doctors. Many people use Questran long term - some for other reasons than c difficile. If it helps you, I would stay on it while you try and find another doctor. Maybe look in nearby cities. I had to go out of town when I had my first FMT and consulted a doctor in another city.

[Spike]

Well I can't get into a GI doctor until the end of the month. Hugely discouraged. Saw a new pcp physician and he told me all my symptoms were in my head and he said even if it was c diff he would never prescribe dificid because it to expensive. Basically take imodium and go home. My insurance covers it 100%. So now I sit in misery for another month. I just want someone knowledgeable in this to answer questions about all this. Like is my case one to treat or keep doing what I am doing. Talked to three doctors now and they act if c diff is some kind of alien we shouldnt talk about. My hope candle if fading.