Newly Diagnosed - Part 2.

[scoe808]

Bobbie - if I want a second opinion (which I think I do now) how do I even go about finding a doctor who will actually know what they are talking about?? Or do I have to just go and hope for the best?

[Bobbie]

I'd see a GI or an ID (infectious disease doc.). Call a hospital (preferably a "teaching one" and ask about referrals according to specialty.) Do you have "Ask a Nurse?" Most areas have one, and they will make referrals. You can google a doctor's name and find out how he/she is rated. Ask any nurses you encounter - they know "the good, the bad, and the ugly." There is a forum called "Doctors" on the site that lists docs. in different areas that posters have used and liked. There are several groups on Facebook about C. diff. - just type C. diff. in the title line. The largest one has almost 300 members and was started by a young woman in KC. Christian Lillis has a good site. It's listed in our "welcome" post.

You have a legal right to your records - or copies of them - so if you change docs. ask for them. Always get copies of any tests, including blood work.

Remember, you know your own body better than anyone else. If you don't respond to treatment, some docs. will say "It's in your head." It's not - it's in your GI tract. C. diff. is a particularly strange infection - it's different for everyone who has it.

Use your computer to do research. Let us know what you find out about a new doc. Best of luck.

[scoe808]

thank you so much!! I will have to start investigating!

On a more icky note, I have had the worst 24 hrs ever! Last night/ in the wee hours of this morning I was in the br every 15 min. and I am not even joking.. by 7am I was exhausted! Everything that touches my mouth doesnt last very long... I am dreading tomorrow and having to do the prep for the colonoscopy... not sure if I will be even standing by then. I bought pedialyte (couldnt find the popsicles anywhere!) and tried to keep myself hydrated.. but at this point its feeling like a losing battle. yeesh. I have a theory though (and please tell me I am wrong if I am or give me your opinion)... I stopped the vanco.. and now I am in the BR more than I ever have been.. could the vanco could have actually been helping all along and it just wasnt a strong enough dose?

Sam

[Bobbie]

Am not a doc. so can't give you a medical opinion, but yes, maybe the vanco. dosage wasn't high enough.

Remember, however, vanco. or flagyl can "mask" the scope. Is this why you stopped it? Do check anything out with a doc. first. Phone the doc. on call in the practice and when the answering service says, "Is this an emergency?" say "Yes." Be polite and persistant - not hysterical. Calmly explain your problem and ask what to do.

Samatha, do you have parents or other family or friends who can give you some support? C. diff. is a lonely disease and even those who have support can use a little extra.

Let us know what happens. Keep hydrated (smart of you) - you can also try Gatorade - dilute it half and half with water if you have high blood pressure.

[gm37]

Sam,
I agree with Bobbie. Your doctor should know that you are having that much D going into a prep. I would be worried about dehydration. Most doctors have an on-call doctor available on the weekend. Call the office number it should be on the answering machine message. You are not the first person to call them during the night.
I am worried about you. Keep me posted.
Anne

[scoe808]

agh, alright I will call tomorrow.. to be honest I am petrified of starting the colonoscopy stuff.. I mean really... how much can I lose before I fade out?! My mom and nana are pretty upset about the colonoscopy they dont think it is necessary.. and I am starting to believe it but at this point I am up for anything.. I just want it to end!

as for Gatorade.. I learned it doesnt agree with me.. even with half of it water... which is unfortunate because I just bought 10 of them. I started drinking a lot of water, gingerale and pedialyte.. I am trying! But at this point who even knows if its helping.. it just seems to leave me so fast.. ugh.

sam.

[scoe808]

and also, the vanco ran out.. so I stopped it.. he didnt say to continue or anything.. alskghaslkghlas.

[gm37]

Sam,
You are in a mess! I had several colonoscopies during active c-diff. It didn't hurt or help. Actually, I think the prep made me feel better for a few days. I am glad you are going to call your doctor in the moning. Let me know what he says.
I hope your family will check on you. Are you running a fever? Be careful!
Anne

[scoe808]

not really sure if I am running a fever.. I just moved out and realized I didnt own a thermometer haha. Every once and awhile I feel like I am but have no way to tell, thats the young in me.. I dont feel like buying one. I will call tomorrow, before I even start the colonoscopy bowel prep procedure.. I will let you know tomorrow what goes on! You guys are really the only ones who can convince me to do things, when it comes to family and friends they really have no idea and dont know how to act when I say things.. so I cant thank you enough!

[Bobbie]

Only someone who has had C. diff. can understand what you are going through. It's one weird disease. Do call the doc. tomorrow.

[beth22]

Tell the doctor how much D you have been having. Maybe they will modify the prep. The prep is for people who have normal bms - like once or twice a day. If you are going that much, you most likely need something milder, so make sure you speak to a doctor or you will run the risk of dehydrating plus messing up your electrolytes. There have been a few posters who were on the lower dosage of vanco 125mg pills and it was not enough. When they switched to 250mg pills, the symptoms improved. Ask your doctor if this might not have been the case with you.

[getwellsoon]

Please, please watch out for dehydration. Since it is already tomorrow, I would call the Dr. now if you are up. He needs to know how much D you have had and will advise you on what to do for the prep. We are worried because dehydration is very serious. You also feel like crap when you are dehydrated and that prep is only going to make it worse. I will keep you in my prayers and please call now if you are up. Prayers for you to come through the colonscopy with answers and feeling better. Carol

[scoe808]

So I called, he told me that I needed to do the colonoscopy ( I think he thought I was trying to get out of it, which I am not ) he said I will be feeling miserable for the next day but to just keep drinking fluids. I have no fight left in me anymore. I wish I could walk into the ER with my jug and tell them to hook me up for the day while I take this stuff, if only that was possible haha.

[gm37]

I am proud of you for calling the doctor. I am sorry he was not more helpful.
Do you live close to your mom? Would you feel better spending the day with her? Just a thought.
I hope the day goes quickly and you get some answers and help from the colonoscopy.
Anne

[scoe808]

My mom ended up coming by, packing my things and kidnapping me back to her house haha. Might I add, they really should come up with a better way to prep for colonoscopys ... just saying.

Thanks for all the help and advice :) I will keep you all posted. Have a good sunday!!