48yr old male

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cnatra
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Joined: Wed Jan 25, 2017 9:11 am

48yr old male

Postby cnatra » Wed Mar 22, 2017 11:14 pm

Well I'm a new member (male 48) from this January(2017) but I've been reading on this site since I was first diagnosed middle of January 2016.

I live in the Houston metro area.

As I said my first C Diff infection was mid- January 2016. This was after being prescribed Clindamycin for an infected big toe (from a cut) over Christmas 2015. I was surprised. I'd never heard of C Diff at the time. Initially I went to a doctor a friend referred me to that wasn't a GI doc but a colon;rectal surgeon. He gave me 10days of Flagyl after discussing my symptoms which were confirmed with a subsequent stool test. After the initial 10 days my symptoms had mostly diminished but I still had lots of sporadic C , occasional D & mucus as well. By the middle of Feb 2016 the C Diff smell was back. I often have had atypical symptoms with bouts of C for a couple days then 24-48hrs of bad D. I went back to the colon doc and he gave me 14days of Flagyl this time. This illness definitely messes with your head. The anxiety is terrible wondering when all the symptoms will finally be gone and then worrying if the C Diff is back when weird GI issues crop back up.

So after the second round of Flagyl things seemed to be normalizing going into March of 2016. As I got into April everything seemed back on track and even though I still had occasional weird C or D after a stress free vacation in June 2016 I figured it was definitely gone & I forgot about C Diff by July 2016.

In hindsight one thing I really regret was not ensuring I had a good GI doc who was very familiar with C Diff after my first round with this illness.
( I did meet with one GI doc Feb 2016 who was well versed with C Diff and even had done some FMTs but unfortunately he moved away)

As a result of my C Diff infection (and this site) I became a regular consumer of Kefir and other probiotics like Culturelle, Florastor, yogurts etc.

So fast forward to Christmas 2016. My gut had been acting funny off and on through December. I did have a sinus infection in November and was prescribed a round of Augmentin. I didn't think much of it but I did increase my consumption of Kefir and other probiotics while taking the ABX.

On Dec 24th I had a big indulgent meal with extended family including to much alcohol. December 25th I started feeling miserable. I started to go to the ER Dec 26th due to bad abdominal pain as well as mild chest pain but ended up just going to the pharmacy and getting over the counter meds for general GI problems.

I finally saw a PA on Dec 28th and he did a bunch of tests. He ruled out any cardiac issues and was certain it was my gut but his hunch was H Pylori and an ulcer. The H Pylori test came back negative though. I did tell him about my C Diff history. He gave me a scrip for Pepcid and said get to a GI doc ASAP. Only problem was there were no GI docs available between Dec 26 and Jan 2.

In fact the earliest appt I could get with a GI doc was Jan 16 . (this was a group of 6 GI docs and initially i had an online appt. only to later receive a call from the office that they were all off until the week of Jan 16)

So I waited . By Dec 30 a.m, though I was miserable with terrible D and that unforgettable C Diff smell was back as well :(

I couldn't believe it was back !! I waited until the morning of Dec 31 to see if my symptoms continued . I still had a 14 day refill of Flagyl from the colon doc back in Feb so I called that in and started taking it New Years Eve.

I had another appt. with my PA on the afternoon Jan 4 but ended up in the ER late Jan 2 with bad abdominal pain and C . I was living on chicken and rice soup , crackers and gatorade. I told the ER doc my history and what was going on. He did x-rays to check out my colon and nothing looked terrible other than some obvious C si he gave me a scrip for Reglan which I've since had 2 GI docs tell me to never take. He also discussed doing a stool test for C Diff but since I was 4.5 days into the Flagyl he figured there was no point because the test would likely be negative. The ER doc told me to find a GI doc ASAP.

I saw my PA again on Jan 4 and told him everything I'd been experiencing. He ordered a C Diff test in spite of the Flagyl and thought I might have diverticulitis. He even wrote me a scrip for Cipro after I asked bout Vancomycin. He gave me a referral to a GI doc and I got an appt. for Jan 11. I didn't fill the script for Cipro !
The C Diff test did come back negative.

So I figured I just had to hang in there with the Flagyl through Jan 13 or until finally saw the GI doc on Jan 11. Unfortunately I got a call Jan 9 though from the referred GI doc's office that he was actually on vacation all week. Also as I finished the Flagyl Jan 12-13 my upper GI was terrible. Plenty of upper abdominal pain and I started getting a rash on my neck and my esophagus felt like it was swelling shut. I had to drink some Benadryl to clear my throat.

I made it to Jan 16th feeling miserable but with high hopes. GI doc was terrible though. He had a poor demeanor and basically said eat more fiber and take Miralax if I have C . He did schedule me for an upper GI ; small bowel with barium for Jan 18 though. Needless to say I was discouraged.

I was back in the ER Jan 17 early a.m. with bad abdominal pain & C again, This ER doc had more snap though and gave me a CT scan in addition to x-rays. Since I had C I couldn't produce a stool but he gave me Bentyl , orders for a stool test and another 14 days of Flagyl to use if I got a positive result on a new stool test. I asked specifically about Vanco because I'd had Flagyl 3 times already and started developing allergic like reaction the last time. He said Vanco was absolute last resort drug so if needed stick with the Flagyl for now. I was "quarantined" off in my own room here once they heard me say C Diff. I also asked how I could have an ulcer if I'm negative for H Pylori ? He said other things can cause ulcers so it can't be ruled out.

So I got through Jan 17 with more bed rest & soup then went to the local hospital for the Barium Small Bowel imaging morning of Jan 18. The staff at the imaging center didn't have the paperwork and then an hour later when they got it it stated CT scan with iodine for abdomen. I questioned this but they showed me the doctors orders so another CT scan was had but with the help of iodine contrast that I had to drink this time.

I found out after going to the GI docs office for results on Jan 19 that the office staff screwed up the doctors orders. I should have received a barium upper NOT another CT scan. After this egregious mistake, the indifferent attitude of the doctor and the staffs lousy attitude (I couldn't see or talk to the doctor and it was a major ordeal just to speak to a nurse) I decided I needed a new GI doc. (this GI group seemed like a colonoscopy mill IMHO)

I forgot to say both CT scans did show some mild diverticulosis in the sigmoid colon but no diverticulitis.

So I called a GI doc my parents had seen for 20yrs on the other side of town. They got me in for an appt. Jan 20 & the doc was all business. He said he could do a barium upper but a endoscopy of my upper GI would be much better and he could get me in first thing Monday morning. In spite of my C Diff history his focus was GERD symptoms so he prescribed an over the counter PPI to start.

I had the endoscopy Jan 23 and it was fairly easy & pain free. After all the imaging and biopsies (he ruled out Barretts Esophagus) I was diagnosed with esophagitis , gastritis (exacerbated by the Flagyl) , GERD and a mild Hiatal hernia.
I was prescribed a diet for that and told to continue with the PPI . I felt like maybe my C Diff focus was all in my head and my wife (& mother-in-law who is a GERD sufferer) were convinced there was a plan now to heal me. I decided I should heed the diagnosis even though my body was telling me otherwise.

My stomach pain got worse, appetite declined, had more bouts of D & C until I couldn't take it anymore and ended up heading to the ER at one of the "big" hospitals downtown night of Jan 25/26 . Initial experience here was good but as night wore on a familiar pattern emerged. CT scan with iodine contrast injected this time but the first ER doc was focused on my gallbladder so I did receive an ultrasound of that & my liver that ultimately came back fine. CT again showed nothing other than diverticulosis.

I was experiencing more abdominal pain here and C so I couldn't produce a stool plus I hadn't really been eating any solid food either. The morning ER doc released me with another script for Bentyl & GI doc referral .

On the way home that morning we called the 2nd GI doc & asked to schedule a lower GI for Friday. They agreed so I started drinking that miserable PEG concoction Thur night. OMG terrible stuff!!
The entire time it was cleaning me out the odor was overwhelming !! It reeked of C Diff.

I was sooo weak that morning . I was down 28lbs. Made it though the embarrassing colonoscopy with no major issues.
Same staff from endoscopy who were all nice. I was certain if I still had C Diff it would reveal itself now . This doc always seemed skeptical of my C Diff claims though.

Afterwards he said no signs of C Diff. We went out for a light breakfast and I went home hoping for a better weekend. It didn't happen though. Saturday night through all of Sunday I started experiencing for the first time full blown 100% C Diff diarrhea. It was the worst I'd ever had !!

So Monday we called GI doc's #2 office and told them what I was experiencing. They said come in ASAP & go to the lab for a C Diff stool test. So another 45min drive across town to collect the gear & paperwork for the test. (I now have my own personal stash of stool collection "hats" and sealed containers)

In fact I drove straight home did the deed and drove right back because I wanted the results ASAP. Funny thing was this lab used a container that was like a butter tub. Not the usual sealed "cup" with a screw on lid. I thought it was strange at the time.

Also when I got the results from the colonoscopy on Monday (Jan30) the report stated I did have some diverticulosis AND "resolving unspecified colitis" .

WTF I thought ?!? I was thinking what else would be causing the colitis other than C Diff ?? They checked for Crohns & got a negative on that

Then when I called Tue afternoon the doc's office said my C Diff sample got damaged in transit so the sample was unusable. That stupid butter tub container !! I was beyond distraught by now. I could no longer spend 45-50mins in the car every time to this office/hospital and had lost faith in GI doc #2 .

Luckily my wife had reached out to a family friend & got a referral to another GI doc close to our house. She agreed to squeeze me in morning of Feb 1. I also had an appt. downtown with the GI referral from the third ER doc at 2pm.

It was super bowl week so I had no desire to drive downtown if I had to.

On Tue Jan 31 I decided to go to my PA's office and ask for authorization of a C Diff test again. He was sympathetic & thorough before so I hoped he would approve. Fortunately he did & I had brought a sample with me :)

I went straight to the lab and got it dropped off. I was certain this would come back positive and I could maybe finally get some help. If this didn't work & Weds was a bust I didn't know what I was going to do.

Well morning of Feb 1 with GI doc # 3 my prayers seemed to have finally been answered !!
Within 15mins of talking to this doctor she said it was obvious I was dealing with a recurrent C Diff infection.

She said I needed to get on Vancomycin ASAP and if this didn't cure me (60% odds she figured) an FMT would be the next logical step. Not only was she familiar with treating C Diff patients she had done about 2 dozen FMT's as well !! I didn't have to explain anything. The Vanco would be a 6-7 week taper. She knew it all. I was soo relieved I practically started crying. I thought " I finally found my Coleen Kelly " LoL !!

AND I didn't have to drive downtown :)

They got me on liquid Vanco mixed in their compounding pharmacy the next day . I was then fortunate enough to fill the next several weeks prescription (at an unbelievable price compared to retail) through my mail order plan with my health insurance.

IMHO the Vanco is so much better than Flagyl.
Virtually no side effect for me vs. Flagyl that had all kinds of bad side effects.

The Vanco seems to have a statistically proven record of more success on initial treatment and for recurrence. I don't know why it isn't used more as first line treatment other than the cost argument but if it has more initial success it would probably be cheaper in the long run since it's efficacy seems better to start with.

She also ordered an entire round of blood tests and stool tests. She wanted to rule out any parasitic infections.

She's not a fan of Flagyl & prefers Vanco. She thinks Dificid is still a little new with more unknowns and reserves it for FMT failures. This stool test came back positive for C Diff as well.

Later that day after I had my appt. with GI doc #3 the PA called and said my C Diff stool test was positive. He was going to call in a Vanco prescription and send me to a GI doc on Fri but I told him I'd finally found a good one.

I'm going to ask my current primary GI doc if I can share her name for others on here in the Houston area.

So Feb 2 started my most recent journey to hopefully beating this devil we've all fought.
I'm currently done with the Vanco taper and doing a few pulse doses for maybe a week or two.

Then I will keep my fingers crossed that no symptoms come back and wait for the next C Diff test about a month away.

I did also go see another C Diff specialist downtown at the med center here in Houston.
Dr. F. Lyone Hochman.

This appt was made back in mid January but I didn't get to see him until late Feb. He was great BTW. He has done over 200 FMTs. He says not all are even via colonoscopy anymore. Some are just enemas or he's even used some of the experimental pills that are being tested. He also isn't a fan of Flagyl. He prefers Vanco or Dificid. He also said if the Vanco fails an FMT would be the next logical step for me.

He's on the national FMT list and works with researchers (Dr. DuPont) in the med center on developing freeze dried "poop" pills to cure C Diff.

I've also developed an allergy/intolerance to Flagyl after 3 long doses of that inside of 12 months.
At the end of the last round I was getting a rash on my neck and it was swelling some too.

So a few take aways from my expereince is why do seemingly so many docs seem so ignorant on how to treat this disease if the NIH has made it such a high profile issue the last few years ???

Sometimes I felt like a "leper" in the ER's. Nobody wanted to get tangled up with the C Diff patient. Even the first 2 GI docs seemed like it was something they didn't want to deal with. Or where they just inherently skeptical because of outdated information (C Diff only in hospitals or with old patients or immuno compromised patients) they have ???

Lastly I really appreciate this site for all the information available here for people suffering with this disease !!!

(sorry if this is so rambling I started it a month ago and then lost most of it so I had to retype it all again)

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