relapse after relapse

[SamanthaP]

I just came across this site and im already in awe as to how many people have/have had this ugly infection. I guess i dont feel so alone anymore..

Lets see..Im 19 years old and have been healthy all my life until this nasty bug took ahold of my body...
Me and my fiance found out we were expecting in april of 07.. i went for my first ob visit on may 25 2007. everything went well, life was good and we were really excited I did everything right from the beginning.. no smoking no drinking i ate right and i took my vitamins. a few days before i turned 19..it was june 20 i went into the ER with a really bad intense pain around my right hip, after a few exams and a ultrasound i found out i had a small cyst on my right ovary. i freaked. i was really scared.. until i found out it was completely normal for pregnant woman to get those because of a absense of a period.. so ok i moved on and we put our mind towards the baby.

in mid july we found out we were having a boy.and things looked good. all exams and blood work looked awesome.. so i thought everything was going to be ok. then in the end of july i got pains in my left side all the way down my groin area.. i was throwing up and i felt like crap, i took pain med laid on that side and it went away.. nothing happened for awhile and i seemed quite healthy.

aug 07 came and i was ok til the end of aug and i had pain on my other side.. lasted a lil bit and then it went away. so i didnt bother with telling the doctor til my next ob visit.

sept 17 07 and i had pain again in my right side so bad i was throwing up every couple of mintues and the pain was so bad i couldnt stand..sit.. nothing.. it would not go away so i decided to go to the ER. since i was so far along (28 wks) i was placed right up with the mother/baby floor.
pain was still really bad. they gave me pain med through IV which the first dose did absoultly nothing.. had a ultrasound done and finally found the answer to my pain...

I had kidney stones..several in each kidney.. i had a secong dose and was admiited for the night that morning i passed a stone..things were looking good even though i still had pain..
i went home and that night i was back at the hospital again with pain that was worse.. i was admitted for 2 more days and my ob said i not only had kidney stones i also had a kidney infection. and of course cause i was pregnant my immune system sucked and i just wanted the best for the baby cause i didnt want kidney failure.. so i left the hospital on a antibiotic called macrobid and was told to see my ob in a week to get on another called macrodanin.

still on macrodanin five days into that med i began the D and thought i had a bug.. when it lasted for 5 days i called my ob and told her what was wrong so they tried to cure it with over the counter med.. that still didnt work so i went to the hospital where i was suppose to deliever (a special hospital just for having babies)
they did several exams for the baby..everything was ok but it was showing i was having contractions i was only 30wks.. i just thought they were full of it.. i was in so much pain from the cramping and the D that it was even hard to tell. i was having D now for over a week and right before i left the doctor on call did a stool sample.. I HAD C-DIFF.

my obs office called me when the results came back i had to wait another 2 days.that night before i slept in the bathroom cause i was going so much every 5 mins for like 8 hrs. in the morning i went to the ER cause my ob told me to.. i went in thinking hey ill get some treatment and go home.. that wasnt the case.. through out the night i was having contractions and it finally came that the babys heart rate was getting really low so they had to do a emergency c-section. i was now 31 weeks.
Never in my wildest dreams did i think that would happen. but it did. He was born healthy a good weight at 4lbs 1oz. he was the biggest preemie there in the hospital nicu. i was hospitalized for a total of 7 days cause i had severe edma starting in my stomach down to my private area which had swollen to small balloons and it was painful to even get up. while in the hospital i seen improvement with my bowels even though they were still loose it was normal that i was going now only twice a day. my potassium was really low and my white cells were up.. thats why i was in for 7 days.

so i went home.. recovering really well from the c-section and the edma went away within a few short days went down to my feet and then it disappered through out my body. my D was doing well i went off the flagyl on oct31 and 4 days later i had the severe cramping and D again.. this time not so bad but it was bad i was going alot and getting dehydrated.. i had a stool sample taken and i had a relapse was put on vancomycin for 21 days went off it nov27 07 and 13 days went by with no pain no D.. infectious disease said things were looking good.. then a day later i was having urges to go to the bathroom really bad with cramping.. this time it wasnt bad at all.. i felt like maybe a small bug.. one day it was 6 times at the most.. better than 50 or 100..right? ha yeahh..

then the next day it was only like twice..it was weird.. i had a stool sample taken waited two days ..had a second relapse..today is when i found out that i had it again..

im now on flagyl again.. for 21 days and ill just have to wait... i would like a second opinion i cant keep doing this feel better than sick again thing.

the relapses mean im not getting rid of the bacteria and i dont know why its happening.. ive been healthy until this happened. ill just hope for the best.

no antibiotics for life never again will i take them.. which is hard when u get really sick.

if anyone reads this and lives in OHIO and knows of a really good infectious disease doctor can u please message me ..my doctor took a week to get ahold this time around and i dont want to mess around with this im tired of it all..i need a secong opinion.

[Nancy1]

Samantha,
Welcome to the group that no one wants to join. You are right, you are not alone. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all other areas in FAQ that interest you.

Several folks here got cdiff with pregnancy or delivery. Taking care of a baby on top of cdiff, whew. You might talk to your doc about changes to your treatments, such as tapering or pulsing as you come off of vanco or Flagyl. Pulsing was what worked for me after 8 months of cdiff. See the FAQ section for more info. They tell me that everyone beats cdiff eventually, and you will too. Good luck.

[whitepine]

WOW!

You certainly have been through so much!
I am so glad to hear that your baby is ok and well and healthy! Congratulations!!!!
You will beat this c.diff it is just very stubborn and takes awhile to go away.
If I were you I would stay on the meds for a much longer period of time. You might want to try a long dose of Vancomycin and taper it down very slowly over a few months.

When i did mine it was like this

Vancomycin 500 mg 4x per day for 6 weeks
500 mg 3x per day for 2 weeks
500 mg 2x per day for 2 weeks
250 mg 3x per day for 2 weeks
250 mg 2x per day for 2 weeks
125 mg 2x per day for 2 weeks

When i relapsed the third time I needed both Vancomycin 500 mg 4x per day for 10 weeks plus Flagyl 500 mg 4x per day for 4 weeks and then I tapered from there.

the 4th relapse I did the same thing and added bacitracin liquid to the mix.

After 6 weeks I did a fecal infusion via colonoscopy and was ok for 9 months until I took Xifaxan, and it triggered relapse # 5 where I am now on Vancomycin 500 mg 4x per day and getting ready to do 5 more fecal infusions at home via enema.
here is what i am talking about
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy


Also, i would be taking Florastor (saccaromyces boulardii) it is a beneficial yeast that crowds out the c.diff and helps you recover. Also eat as much yogurt as you can with active live cultures and try to take a high quality probiotic such as VSL # 3 (google it) each day.

I think as long as you stay on meds for longer and at probably higher doses you will recover. If Flagyl works for you and you can tolerate the side effects, maybe you can do a scheduled taper with Flagyl, just like you would do with vancomycin.

i wish you the best of luck.
I hope you feel better soon.
We are here to help you anytime.

Congratulations on your new baby!!!!

[SamanthaP]

So lets see I relapsed in december after a successful 13 days off the meds and was put on flagyl 3 times a day and every time i go back to my infectious disease doctor he presses on my lower stomach...it hurts and he says i prolly still have it cause my colon is swollen, he says.

I went in jan and "cause my colon seemed swollen", he placed me on a tamper of vanco til the end of feb..

after 9 days i relapsed on march 3.. and he called in 14 days of flagyl 3 times a day as of sunday march 16 i have been of the medicine.. and i see him on the 20th who knows whats going to come next....

[fire7163]

Samantha:

I totally agree with Roy on this one...very confusing course of treatment. If it as me I'd seriously consider looking for a new Gi or ID specialist.

[SamanthaP]

Update...

I went to the doctor on may 1 and had stopped my vanco treatment a week prior. I sent in a stool sample five days after the med. and it came back negative for c-diff but.. the pharamcy made a mistake on the prescription i was suppose to be on it for 12 weeks instead of two (like i took it) so he said it might come back.. this time he touched my stomach and no pain at all.. and that whole 7 days i was off my medicine i felt the greatest since having the c-section and being sick.. it was weird..

I do have an appt in a few weeks with cleveland cause i got fed up and asked my family doctor for the referral. For now im on a tamper of the vanco.. the doctor wanted to restart it since it was messed up..

****

[Aread]

Hi Samantha - How about ID Doctors at rainbow babies or cleveland clinic? Not sure where in Ohio you are located but to see anyone from those 2 hospitals would be worth the drive. My son who is 2.5 has battled it twice and we've been in RBC.

[SamanthaP]

Its been awhile since ive updated..I go to cleveland to get all my medical needs now.. i had a colonoscopy on june 6th and waited for the results.. i was soo nervous to have that done, i had to drink that nasty movieprep stuff ..the procedure was a piece of cake even though i was only half asleep. It was after i got in the car to go home.. all i did was throw up..
got my results they found nothing.. but there was some bleeding of the colon(he said that the day i had it done) so the doctor at cleveland took me off the vanco and wants to do Florastor 3 times a day (250mg)... and basically just wait and see what happens. i have been off the vanco for a week and only on florastor for 3 days.. my stomach hurts really bad sooo i really dont know anymore.. he said if i start to have D then i will need the bowel transplant.. and thats just ucky.
I cant believe ive had this for so long..My son is now 8months and is soo healthy, for being 9wks early hes made up for his size :)

the only thing i wonder sometimes is, was it the c-diff that made them take my son at 31 wks or was it the blood clotting disorders they found out i had 3 months after i already had him...i just dont know.

[SamanthaP]

Hey I was wondering if this is normal or what... ive had cdiff for 10 months now and on and off vanco.. ive been on it again now for a few wks and my stomach feels funny. never like this.. and it seems puffy. I know Ive had a baby and everything but I work out constantly and my stomach just feel weird to touch.... any suggestions??

[SamanthaP]

i know it is but i havent found a dr yet that is smart enough to understand whats going on...

[klt03301]

Hi Samantha. My stomach is still "puffy" as in bloated and sore some days, but not as badly as it used to be and I'm over 100 days off the vanco. It's been like this off and on since I got C Diff. Roy's right...check with your doctor!

Best wishes and congraulations on your healthy baby!

Karen

[SamanthaP]

Well my son is now a year old.. which means i've had this for a year now!!. I cant believe it..
Im seeing a new dr at the university of cleveland, since the cleveland clinic is not such a good place.

Hoping for some luck here. I'll see in a few weeks :)

[dstrock]

Samantha, congratulations on your baby. I had c-diff for four months - nothing like what you are going through, and was on again off again on the medications. It didn't seem like anything was working. Finally my chiropractor turned me on to an herbal called Colon Bacillus (which puts the good bacteria back into your body) - once I started taking that along with the meds, I was finally able to beat the c-diff. Have been free for 2 years now.

[dstrock]

Samantha, congratulations on your baby. After a four month battle (considerably less than yours) - my chiropractor provided me with an herb called Colon Baccillus. I truly feel this herb, along with the meds, is what finally allowed me to beat the c-diff. It may be worth a try - the herb puts the good bacteria back into your system.

Good Luck - Darlene

[Motherof2]

I live in Cincinnati Ohio. I am 27 years old. I also got my c-diff after a crazy-bad pregnancy and an emergency c-section followed by bowel obstruction and dialated bowel loops (whatever that means...ct scan results). I am on my 6th relapse in 10 months so I don't know if you would want to take any advice from me (ha ha) but I am here to talk...
I am trying something new...pulse dosing and my doctor is working with me. I also eat goats milk yogurt now and drink kefir every day in addition to 4 florastor every day. I told doc that if I am not cured after this 3 month round of pulse dosing I want to try a fecal transplant with my husband as the donor. I don't know if you have researched any of this stuff but please let me know if you need any support or you just want to talk. I have 2 kids, a 2 1/2 year old and a 1 year old...my husband has done so much research, I could even email you some artilces...but this site has the best info I have ever been able to find...good luck...cheer up buttercup =)