Jayne's Case History

[Jayne]

I am 39 yrs old, wife, mother of 2 boys (now 11 & 13)
I've had many surgeries in the past 10 yrs due to health issues that developed after giving childbirth (autoimmune). However, when I'm feeling OK I am a hyper, fun loving, active person: hiking, biking, waterskiing, tennis, mx dirtbiking (yea that's right), & the list goes on. But this c.diff thing has really caused me to not see the "OK" days for quite some time now & I'm growing weary.

04/07: classic post-antibiotic (AB) onset of c.diff
AB History: given 3 different ABs from 11/06 to 3/07 for rootcanal infection. Early 04/07 saw ENT who said infection possibly now spread to jawbone so he put me on the villain Clindamycin. I had a gut feeling when I read the details from the script that the possible side effects sounded scary. I had strong reservations as a put the 1st pill into my mouth, but I was desperate to be rid of this pain. Boy was my gut instinct right.

2nd day after taking it I developed terrible diahrea (D) & abdominal (ab) pain. We were leaving for a long driving trip in 2 days, so I was worried & called my MD. He sent me for stool test & called same day to say it was positive for c.diff. What's that? He explained risks, put me on Flagyl & FloraStor.

So off we go on our vacation from CT to FL. Had D the entire trip (10 days). I develop fever 100. Next comes vomitting, D worse & unbearable ab pain. Per MD, time to go to local ER. They check me for septsis (neg), given IVfluids,nausea & pain meds & tell me to come back if not better. Next 2 days are spent entirely in bed. Terribly weak, 100.4, D, ab pain (too sick to travel). Finally decide to begin our long drive home. (Fever still) D get severly worse..stopping & "going" on highway for almost 3 hrs having D every 15 minutes. I pass out & my husband calls MD who says take to nearest hospital immediately. So I'm admitted in Virginia in isolation for extreme dehydration. Checked for septsis (neg), given IVfluids, same meds. Dr wants to admit me for colitis. NO-I just want to get home (plus my kids need to get back for school). He agrees to stabilize me for travel, that evening we left to get home. My MD sees me next day, sends me from his office to be admitted to hospital for extreme dehydration & colitis.

In hospital for 6 days: no food, IVfluids, painmeds, Bentyl, Florastor, Protonix, Questran. Not septic, c.diff neg (but possibly false). Finally Questran stops diahrea by day 4. Severe spasms & pain. Xray OK, barium CT OK. (now lost 14 pounds on c.diff diet.)

By day 4 home diahrea returns with vengence. C.diff still neg, along w/other bacterial, parasetic tests. Taking Questran, Levsin, Florastor, Protonix, painmed. On fiber restricted diet (absolutely no fiber of any type) too.

05/07: been about 3 weeks. Still having D, ab pain, no fiber, same meds. Go for 1st visit to GI, he wants to send me to ER for IVfluids but is able to give me them in office & sets me up w/PICC line & IVfluids to be given at home. Following week does Endoscope & Sigmoidoscopy. Findings: inflamation of lower bowel, bleeding erosions in both stomach & duodenum along w/dialation of duodenum. Says he see cases this bad about 1ce every 3 yrs (oh...I'm so special!) Says it will take quite some time before my system will recover-hang in there.

06/07: still having bouts of D, ab pain, lg fever on & off. Slightly increase fiber, same meds, less Questran, more Protonix. IV fluids 2ce/wk. End of month request to get PICC line out & stop IV@home (getting sick of being tied to poles & nurses)-promise to try & drink more.

07/07: GI wants me to try anti-inflammatory for gi tract-Lialda (mesalamine). Doesn't seem to make a difference. Other meds same, still having D 5 to 7 times/day every 2 to 3 days. Here's the greatest news...I now have loss my job! That's great...more med bills & less $$$$. (GI says stress isn't good...super.)\

08/07: D still same frequency. Spasms alittle better (I'll take ANY improvement). Same meds (no Lialda). Guess what? I have a New symptom...bleeding! Called MD, bloodtests OK. Lasted for 3 days, says I may have developed hemmoroids (the gift that keeps on giving). GI says if it happens again he wants to scope me again (another $500 co-pay). It does happen 2 wks later, but only bled for 1 day (didn't call anyone-just want to be left alone).

09/07: spasms less frquent, D same, (oh I forgot to mention that since the c.diff I have had non-stop gas issues), meds same, now can eat some cooked vegs & some canned fruit -YES! (Up to this point I have only been able to eat mostly "bad" carbs & have gained back 8 pds.) I miss my salads, grains, fresh fruit & vegs (I know I'm whinning).
09/13/07: major turn for the worse...I fear the c.diff is back! Tues had D 5 times & stomach pains much worse, nausea bad, general feeling pretty bad (joint pain extreme), now it's Thursday & I had D 5 times but the reason I'm panicing is that the last 2 bms were c.diff classic (we know). Called MD, faxing order to hosp for stool test. Ab pain much worse.
09/14/07: 9:30am dropped off stool sample-hopefully get results before weekend (the sooner I start Vanco-the better). Had D 4 times today so far. Feel like cr**! Say a prayer for me please. Thanks for caring.

[Jayne]

9/19/07 Told test was negative, but white cells found. PCP said stop taking Vanco & call if not better for re-test.

Symptoms not much better, so PCP sent me for another stool test (which most likely won't help because I took 3 days of Vanco (this "false" negative thing is enough to make a person crazy!).

Test came back negative again. Symptoms abit better.
To take Vanco or Not to take Vanco...that is the question.

9/26/07 Saw GI Dr., good 40 min. consult, at which he said the last stool test was useless. He feels as though c.diff is not back, but that I am most likely dealing with a post-c.diff colitis possibly aggrivated by my autoimmune problem. Said white cells in stool indicates inflamation. He scheduled me for a "double-dip" (endoscopy & colonoscopy) for 10/10. He is also ordered 13 blood tests & another stool test. Oh yah...my PCP had put me on Questran & GI said it can mess up my tests so to stop taking it & wait 4 days before going for tests (good to know). My current symptoms are D 3 to 4 times every other day or so, ab pain comes & goes, eye pain, leg cramping, feverish on & off. Hopefully I'll know more after scopes on 10/10.

[Jayne]

10/10: had scopes; colon OK, stomach ulcer. D same.

10/15: went to ER. Ab pain bad, radiating to back, vomited. Not sure what's going on. Was admitted to hosp. After many tests & ERCP, found that I had a new ulcer in the duodenum. Also TSH levels high-possible thyroid issue? What's going on? Stayed in hosp for 5 days, then released. GI Dr sched pillcam/M2A capsule test (swallow a pill that is a camara to view the small intestine-cool) on 11/19. Suspect autoimmune may be attacking intestines post c.diff aggrevated. Hope to get some answers soon. Abdominal pain 6 on 1to10, risk of ulcer perforation if it doesn't improve. Still on PPI-Protonix & now on Carafate too.