Kate C- Case history

[KateC]

Hello,
I've been lurking for awhile & appreciative of all the info here.
Ok- here's my story:

In ER 12/11/10 after several days of abd pain, bloating & erratic BM's. When i started to run a fever thought it best to get checked out- plus I was in pretty bad pain.
CT scan showed "possible diverticulitis", which seemed reasonable since I have a history of diverticulosis and the pain was settling to the left side.
While in the ER that night I made at least 7-8 trips to the bathroom, getting weaker each time-- no one care or bothered to make note of this.
I was given scripts for Cipro & Flagyl for 10 days. A little back up history- I had Clindamycin for dental work 11/29/10 and several times in the prior months ( never again...).

On the morning on 12/26/10--- everything hit the fan-- many explosive trips to the bathroom- severe sudden weakness, joint pain-- general "I'm dying" feeling. My primary doc ordered a stool test & 3 days later called me with the wonderful news that I had c diff. I had to submit 2 specimens for some reason and this was in the midst of those horrid snowstorms. It was a nightmare to say the least. Primary doc prescribed 10 days of Vanco 125 mgm & assured me I would be fine.
I improved some but never came back to normal.
End of January , just after having eye surgery ( thought I was better enough to go through with that-- no !), it hit again-- there is no mistaking that headache & BTW I had that same headache , which I've never had prior in my life, when I was in the ER 12/11/10. Another stool specimen & it was negative this time...

2/11/11 again started with bad symptoms, THAT headache- another stool sample & this time was positive. Again put on Vanco 125 mgm 4 x day & to sollow up with GI doc. Saw GI doc on 2/21/11- was still having loose stools and urgency, so he upped my dose to 250 mgm 4 x day & started the long taper dosing. This was 250 mgm of Vanco 4 x day for 2 weeks, 250 mgm 2 x day for 7 days, 1 x day for 7 days, every other day for 7 days, then every 3rd day for 2 weeks. I just finished my very last dose this past MOnday 4/11/11. Throughout these weeks I have continued to have symptoms- only the last few days have things started to get a little more normal, but I still feel drained & of course scared to death. Have had 2 additional stool tests during this taper dosing & both were negative despite awful symptoms.

So, now it's wait and see. I have asked my GI for Xifaxin but he was resistant to that for some reason. Although he says he will not be surprised if I relapse again. He wants to to see Dr. Brandt in NYC to schedule a stool transfer but I cannot get in to see him until JUly. My GI is trying to get stool transfers in place at our local medical center but he is getting much resistance-- to much red tape.

Some more history-- my GI feels I have sadly been misdiagnosed for quite awhile with IBS. I have spent the last 6 years practically living in hospitals & rehab center with both my parents and my father had c diff just before his death 2 years ago. I also have Lupus and a lousy immune system. My white blood counts are now running low which has me frightned to death. If I get a bad infection that needs antibiotics I am up a creek & my body cannot fight infection due to the low white blood counts. My mother is in a nursing home & I have not seem her since Christmas Day! This is breaking my heart but the docs have strictly forbidden me from going there.

I just started back to my job after being out since January between the eye surgery and this monster. thank goodness I work from home but it is a draining job. I am so tired and I want my life back. I am normally an active, 'young' 59 yr old. I (used to) dance weekly or more with my friends, I love rock and roll & working out at the gym.
I am now vegetating in my computer chair in a severe anxiety mode. I have never, not for a day even, lost my appetite with this thing-- being winter I went into baking mode which was all I had energy to do and thus have gained weight.
Am in a bad place mentally & hoping this turns around so I can give hope to sompene else one of these days.
Thanks for listening to my novel ! I will report back as things progress. Thanks for this wonderful message board.
Oh, and I am taking lots of probiotics- thanks to the person who suggested Jarrow s. boulardii with MOS 5 billlion- I take 2 tabs 2 x day, Culturelle 2 x day, another hi potency probiotic with 18 strains equalling 10 billion- 2 of those 2 x day, plus I am drinking a glass of plain Kefir 3 x day-- don't know what else I can do- other healing suplements & herbal teas for the GI tract as well.
thanks again
Kate C

[KateC]

Hello everyone,
Well I just typed up a very lon gost & it went into cyberspace -- am too exhausted to r e type it all.

I wanted to come in here in early march to post under success stories as I had almost 3 glorious months
of feeling totally normal!!!!
That was after a year of hell.... but I had not tested + since last April.
I did a round of Xifaxin in Sept since they kept saying I had PI IBS-- got somewhat better.
then got hit with a bacterial infeciton in NOv 2011- they put me on 10 day z pack along wiht a 5 week Vanco taper
& I did very well.

IN early March I realized I was better than I could remember in a very long time.
For years they told me I had IBS..... I don't think so!!
It was wonderful- the paranoia was going away- I got over the feeling that I had to wash my hand with bleach &
bleach everything before I touched it.
I started to socialize a bit again.
I was eating anything I wanted !!! With absolutely no problems at all !!!
I continued to take my probiotics, drink Biko K every other day and take s.boullardii daily.
Plus yogurt, kefir & saurkraut (ick).

Out of nowhere it hit again on 3/16-- there was no mistaking it.
Sent specimen to lab & was +.
GI wanted to put me n vanco again but I asked for dificid which I took for 10 days.
The D went away within a day or 2, belly burning last a few days more & then I seemed good.
Last day of dificid I wasn't feeling right & had alot more urgency & "looseness" so sent a specimen- negative.
Sent another specimen 4/4 & was + !!! A tthis point I was feeling much better, although I don't feel "well"..
hard to explain-- feel a bit sick but my allergies and sinuses are notright so thought it was that.
I refused treatment as I was scheduled to see an ID for consult yesterday.

The iD & I agreed to send specimen for pCR which I've never had ( my GI is useless)
Yesterday I snet a specimen for toxins in AM and this mornign sent one for pCR-- we'll see...
She also had me have labs done for immune testing.
I am a nervouse reck about this.... I have lupus ( which they say is stable), but my white count sometimes
runs a little low & my CRP has been high since last year on & off.
I feel like I have a consntant snus infection. always feel "sick"

The iD mentioned that if my immnogobulins are low it might be helpful to try IVIG, but she also said if it were her she would
just do the stool transfer. I have located 2 local docs who are willing to do the transfer.
I have read that if you are immunocompromised you have to be careful wiht probiotics... this freaked me out...
And then I wondered if it is safe to do the transfer if your immunoglobulins are messed up.
I am just sick of it all and tied & very scared.
I am now 60,

[KateC]

Oh my gosh- I am so sorry- I didn't realize the above posts posted- thought I lost them- don't know what happened & I don't know how to delete... forgive me!

Well, you get my drift... again, so sorry!
started to say at the end there I am 60 & very scared that this thing, especialy if my immune system is bonkers, will kill me.
I know I have to get a grip.
I am sooo tired- I have to work- we hve immense financial problems.
I also can't affford any out of pocket for the stool transfer so I don't know what I will do if it comes to that.


I am sorry so many of you are still suffering- I so wanted to come here to give encouragement & NOT be whining.
Again apologies for the multiple posts- I don't see where I can delete them.
I now wait for the pcr & repeat toxin test, but I know they will be +.
If I do not have D, should I still go forward with the stool transfer or take vanco again followed by Xifaxin?
I am burnt out.... can't think anymore but can't trust the docs.
Good night all- I pray everynight for everyone with this horrible disease !

Kate

[KateC]

My update:
C dif toxins on 4/23/12 was posiive.
Saw a new GI this past week who will do the FT, so will be making plans for that soon.
Meanwhile I will be on vanco until then.
The one good thing is my new gI doc seems to be well informed and compassionate.
I will try to put my trust in him & use some energy to get well.
I want to use my son as my donor but he will not be finished with school for a few more weeks.
Hopefully the legistics will all get figured out soon.

[KateC]

Update.... today is the DAY for my FT.
My son is my donor.
Praying this will be the real start to getting back to living.
Will update as things hopefully progress.

Kate

[KateC]

8/18/12 will be 2 months since my FT-- what a ride !
Have not posted as the first month was pretty bad with severe gas pain, & daily fear that
IT was back.
GI said not to test unless there was diarrhea or other symptoms that were continous with
no relief.
Well, I knew the symptoms I was having were not c diff, felt more like crippling IBS,so I rode
it out.

Thought I was over the hump & strating to have a day here & there that were encouraging when
3 weeks ago out of no where I developed fever & what I call "trapped gas".
ER visit which cause major panic-- the scene of the crim in dEc 2010 where they gave me Cipro
for "supposed" diverituclitis- the rest of that story is history.
The same nurse who treated me teribly was there- I started to panic bad- literally was trembling.
didn't want to touch anything or have anyone touch me-- it was a bad scene.
CT scan which just like dEc 2010 started the massive diarhea- now I was freaking out.
Went to "the" bathroom same as last time & it was soiled beond belief.
I became hysterical as I had to go & refused to go 'there" !! I was screaming at the staff to go look
at that c diff infested mess. They found me another bathroom which was cleaned wiht bleach.
A nightmare...
Then they tell me I have diverticulitis & want to put me on antibiotics.
I refused- told them I needed 48 hours to see if I could heal myself.
I really felt that the fever was due to getting some sun ( which I never do due to Lupus), & I felt the abdominal pain
was this trapped gas thing I have had before- relieved by CT scan prep.
This was a SAturday & my GI called me at my home Sunday.
He agreed to try a wait & see approach as long as the fever didn't go higher or symptoms worse.
But he said if I needed antibiotics we would go wiht it & deal wiht the c diff if it returned - he assured me we
could do another FT and all woudl eventually be fine.
Fever broke the next day. Started myself back on peppermint & fennel tea & peppermint oil caps which has
been a life saver-- highly recommend these simple OTC treatent for IBS type symptoms.

I am still not great, but I am better.
People tell me my voice sounds different- more alive..
I've had other health problems weighing me down so it's hard to say that I feel great as I have alot of other pain'& worry, but the bathroom department is a bit better as long as I stick to my regimen of Acacia fiber powder, pepermint oil caps with fennel & ginger ( from helpforibs.com)
I am eating pretty much whatever I want & trying to increase vegetables & healthier food.

About 3 weeks ago I had a call from my old GI- he wanted to know if I wanted to be his first FT patient.
Told him he was too much too little too late.
He said I made an impact on him & he had wored hard to get it in place.(I told him off a few months ago when I found out there
were 2 other area docs doing FT & he let me suffer for 18 months!)
I said great- go save some lives instead of letting little old ladies die.
So I now actually have 3 local docs at 3 different area hospitals I can go to for a FT.... what a difference a year makes !!

I did not want to post here until I felt things were going in the right direction.
I am very grateful to have found my new GI doc- he is calming & stays on top of allc diff research.
I'm in good hands I believe.
He said at 2 months out he will call it cured.. fingers crossed.

What I realize now is how horrid it is to be so fearful of antibiotics. My life revolves around
avoiding infection & making sure I have all natural remedies on hand for any possible type of infection.
A insane way to live but I'll take it over c diff.
Last week I thought I had a bladder infeciton-- the test strip in fact said positive.
Panci mode again, but quickly got online to find natural remedies.
I had Cystex & cranberry pills & juice on hand, did the Apple cider vinegar, incresae magnesium, Vit C & flooded
my self with fluids.
The very next day I tested negative so I rode out the symptoms and am fine now.
I didn't have blood in my urine which is why I tried home remedies- if I had had blood I would have had to give in I suppose.
I have warded off 2 sinus infecitons- a constant battle- Sinox spray & apple cider vinegar !

So thats it guys... I spend alot of time at other health boards right now due to some other pretty scary issues
I am battling.
I have NOT forogtten everyone here-- always in my prayers & thoughts
xo
Kate

[KateC]

Well I passed the 3 month point 9/18/12 since my FT,
GI said call it a cure at 3 months.
I'm just not buying the cure thing. It's been rough, really rough.
Everyday is pretty much a struggle with gas or frequency or feeling C.
The occasional normal BM feels like a miracle.
I understand ibs goes with this, but I have had a few occasions where I am positive
IT was back- but I didn' test. why? I just don't want to hear about it anymore.
I really think if I hear a positive c diff test again I will have a complete breakdown.
If blatant D had continued I would have tested- it was serious D but short lived.
I figured even if it was the beast, maybe my body can fight it off without starting the
whole vanco nightmare again.

I was so uncomfortable last week I did send a specimen o- figured it was about 3 months out, maybe time to test.
Was negative. I honestly believe it's still there but my good bugs are fighitng it off.
I had arhritic problems prior to c diff, but now it is horrible.
Everything hurts- I am so stiff- I have no energy- can't exercise.
I hate what this $%##$ thing has done to me !
My belly is always so bloated I look pregnant. I was a petite, in shape woman, size 4 on a fat day.
I am now bursting out of size 10-12...
I now have new abdominal pain that I didn't have prior to the FT.
It is high up- epigastric area. I sometimes wonder if the FT didn't cause new problems.
I will see my gI next friday-first time since the FT on 6/18.
I just don't recognize myself anymore & I had high hopes of feeling like me again-- so far, not happenineg.
Not looking for synpathy as I know how much everyone has suffered & continue to.
Just needed to vent a bit.
It is hard for me to get on this board as I am working 2 jobs (insanity), & spend alot of time at a glaucoma message board.
That is consuming me at this point as I am losing vision fast & optic nerves are about gone..
I will try to catch up on how everyone is doing over this weekend.
love to all,
kate