Rita's Case History

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peanut
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Rita's Case History

Postby peanut » Sat Jan 05, 2008 5:21 am

I feel i should tell my story since im now becomming somewhat of a regular user on the site. I'll try to keep it somewhat short... Well i've been dealing with c-diff colitis for almost 8 months now.
I've had sinusitus/allergies and chronic pnemonia for the last 10 years following a bad car accident that deviated my nasal septum, which unfortunately began these respiratory problems. Got pnemonia pretty bad in Jan. 07. got well and a few months after that began having wisdom teeth problems, which led to off and on sinus infections. Between my family doc and the oral surgeon i was going on and off clindamycin and cipro for about 3 months until my wisdoms were all removed. I think
in that time period i took 3 -10 day scripts of clinda, 1- 2wk of cipro, 1-2wk of levaquin, and a 3 day steroid. Never being warned by any of my docs about overusage, or probiotics for that matter.
My GI problems started the end of May 2007, about 30 days after finishing my final dose of clinda.
Started with a few occurances of mucus in my stools, week later came all the other symptoms. So i saw a gastro, and was diagnosed with c-diff. went to the hospital ER several times throughout my horrible journey. And have gotten every test done imaginable. and so much bloodwork over and over.
my second relapse was the worst, which shortly followed my colonoscopy. severe symptoms which kept me in the hospital for 4 days. treated that time with 30 day vanco taper. Couldnt eat much at all when the colitis was severe, as like everyone else. so each time i relapsed i went back to the brat diet and tried other nutrtional supplements(ensure, benecalorie, boost, metagenics)
And along the way seems as if ive also developed some other health issues. every time i would get a ct of my abdomen done they would see something else. first thing was a swelled kidney which at first i thought was caused from the vancocin, but now think was caused from the drug
hyocisamine (wrong spelling) which my first gastro gave me for intestinal cramping and such. after 2 days on that my bladder functions became strange and of course 3 days later the scan i got showed the inflamation.
the second thing was a few months later which was a hemangioma on my liver which is harmless for the most part, dont know if that has to do with the colitis or the drugs to treat or something else entirely. and one of
the stranger things is my menstral cycle got all messed up. and i noticed that every time i relapsed(5x so far in eight months) it would either be shortly before/during/ or after my period. my vision has changed, ive developed keratitis, and of course lost a total of 50lbs so far from this monster. And now to top it off ive recently got another ct
scan and it showed i now have kidney stones. uuggghhh....i'll say when it rains it pours. Thank god for xanax!!!!

I began taking probiotics with my treatments once i found this godsend support group. my 4th relapse i did a 2 wk vanco followed by a 2wk xifaxan which seemed to help alot. and ive been taking 4 florastors daily
along with 1 p. reuteri and 1 culturelle(which i tried to up to 2 daily and it gave me cramps)
but ive noticed that with each relapse my symptoms seem to get milder. this last relapse which i cant say is a true relapse except for the fact that my stools tested positive my symptoms only consisted of slight blood/mucus and stomach pain/gurgling, which now went dormant again but my doctor wants to treat anyway but i disagreed. so now, im getting ready to see a 3rd GI doctor, and also an ID doc.

peanut
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Posts: 131
Joined: Wed Oct 17, 2007 2:59 pm

Postby peanut » Wed Jun 18, 2008 1:00 am

Well, Its been quite a while since ive written. Sorry I havent been around lately. Ive been dealing with some other health issues and also my best friend got very ill with cancer and recently passed away. So a lot of my time was with her as well.
Since my last update…
It is now 210 days since being off vanco and virtually cdiff free. Now have IBS,and still a few days with stomach and stool isues, but overall my colon is now starting to return back to normal.(as normal as can be after cdiff). Still havent gained any weight back yet, and still some foods that I cannot tolerate,as well as some vitamins and minerals. but it seems like time (a lot of time) is the healer of this disease.
Had another colonoscopy in april because I was having continuous blood in stools at that time. Was so afraid of relapsing after the procedure cause I was already 5 months free. Came out clear aside from having a few small internal hemmroids. No relapse thank god.
I still take probiotics daily. 2 culturelle, I p reuteri. I think I will take those 2 for a very long time to come,they seemed to have helped a great deal since the day I started them, especially the culturelle. I just stopped the florastor recently, have been taking that as well for about 8 months straight. I think its starting to physically bother me now. Ive gotten oral thrush 2x since cdiff..once recently, and also white vaginal discharge. So im kinda putting some of that if not all on the overusage of florastor. Don’t get me wrong it is a fantastic probiotic for use with cdiff and while taking antibiotics and it has helped me tremendously while taking all that vanco etc.. i just feel that since ive been antibiotic/cdiff free for quite some time now the florastor is actually beginning to effect me differently. Maybe its from taking 4 pills daily for 8 months straight.
Since the cdiff began last year, ive started having other health issues that ive never had prior to the disease. Kidney stones is one. Another is vision changes. Also skin rashes and sensitivity.
My menstral periods started getting out of wack since the colitis began (probably highly due to stress and drastic weight loss). But since jan/feb the’ve become consistently irregular with bleeding in between periods, prolonged bleeding, pelvic and bladder pain, urinary issues, bilateral breast pain, Sometimes I think im going through perimenopause, but blood tests show differently.
In march I had a colposcopy done to check for cervical cancer, because the pelvic pain was progressing. That came back clean.
I have had, and still have so many tests and sooooo much blood work,ua’s etc..since the cdiff beast reared its ugly head last year.
I just have to list all the tests Ive had..this is so ridiculous and sad….
11 ER visits (longest hosp. stay was 4 days-severe cdiff relapse)
10 stool cultures
25x bloodwork (cbc’s, metabolic studies, lupus, aids, hormones, thyroid, cholesterol, celiac, pylori, iron, b12, immunoglobulins)
16 UA’s (including cultures, 24 hr urine tests, 3 cathedar withdrawals)
2 colonoscopy’s
5 abdominal CT’s
2 MRI’s abdomen
1 kidney ultrasound
5 pelvic/transvaginal ultrasounds
4x vaginal cultures
1 mammogram
1 cystoscomy-bladder
2 chest xrays
1 colposcopy-cervical biopsy (the most painful procedure I have ever had in my life)
Unbelievable now that im looking back at all this. Thanks to cdiff I have had so many tests done that I never could have dreamed of at my age. Enough for one persons lifetime shoved into 12 months. I know a lot of others on here have gone through the same.
Well, because of my new pelvic/bladder issues, my new urologist is scheduling a cystoscomy with hydrodistention for next week. He thinks I might be now dealing with interstitial cystitis. He claims some of his female patients who have developed IC have had cdiff prior to. Which I do believe from my research ive found that a condition like IC (inflammation/irritation of the bladder) can very well be caused from an intestinal infection.
If that test comes back clear my gyno wants to do a laproscopy which I dread even the thought of getting.
My uro wanted to do the 2 procedures together with my gyno but insurance issues got in the way of that…ugh
Anyway, will post again after my procedure

peanut
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Posts: 131
Joined: Wed Oct 17, 2007 2:59 pm

Postby peanut » Sun Nov 15, 2009 10:45 am

its been quite some time since ive been around. im so sorry , when i lost my job during full blown cdiff i also lost my insurance and all of us know how expensive this disease can be. so i had to sell my computer and alot of other things. of course my debt will be there for some time but what can you do.
well its been almost 2 years now since ive rid of the beast. as far as my stomach issues go im still dealing with IBS and hemmroids especially during my menstral cycle and diagnosed with mild acid reflux disease. i do still get occasional pains and cramps. still have trouble with some foods. still cant tolerate milk, tomatoes, peppers, red meat. i still and will prob forever take culturelle every day since it has helped me so much ive stopped the florastor for now but will take it again god forbid i ever need to take another antibiotic.
ive also gotten my cystoscomy w/ hydrodistention done and now diagnosed with chronic interstitial cystitis which from my research and my urologists experience in my case is caused from the cdiff. and i still believe the kidney stones i now have(which i never had before cdiff) were caused from the vanco or something related to the disease. so funny how all the other health issues i have now i got post cdiff
my anxiety has gotten better but ya know i still wash my hands a million times a day i will not and dont think i ever will use a public restroom again still constantly bleach my bathroom and this is sad but when i was full blown i bought a rubber inflatable toilet cushion everytime i went potty that to this day i still use at home and friends and families homes.
ya know its so strange the impact that this disease leaves on us all. its been 2 years and i still get so scared everytime i get sick in any way. just 2 months ago i got sick with head and chest stuff and i got so scared that i would possibly need an antibiotic casue i am prone to pnemonia so made my doctor do a chest xray and check my white count and all the necessaries to hopefully exclude bacteria. turns out it was viral bronchitis/mild flu. im so sick of doctors just assuming and pushing antibiotics regardless of the diagnosis.
will post again soon

peanut
Regular Contributor
Posts: 131
Joined: Wed Oct 17, 2007 2:59 pm

Postby peanut » Sun Nov 29, 2009 9:45 am

one thing i forgot to mention about my post cdiff is im now going through perimenopause. im only 38 but docs seem to think my body was pushed and i guess changed from the cdiff? who knows...

peanut
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Posts: 131
Joined: Wed Oct 17, 2007 2:59 pm

Postby peanut » Mon Feb 08, 2010 1:01 am

Since my last post i became sick right after xmas with what i thought was a relapse but thankfully it was just a stomach bug that lasted about a week. had all the old symptoms back (except for the blood) WOW did that scare the bejesus out of me!!! Almost done with my hepatitis series shots. I insisted on getting them cause my last bloodwork stated that i was not protected against hepatitis. And because i just found out that i have hemachromatosis ( iron overload disease), which was inherited and has nothing to do with cdiff. my menapause issues are slowly progressing but theres not much us girls can do about that.
Well until my next post :)

peanut
Regular Contributor
Posts: 131
Joined: Wed Oct 17, 2007 2:59 pm

Re: Rita's Case History

Postby peanut » Thu Dec 12, 2013 10:12 pm

its been so long since ive been here and posted...i think of this support group often and how it has helped me so much...i truely owe a debt of gratitude to the folks that put this group together and helped me through the worst time in my life,and how they continue to help others
since my last post...ive remained cdiff free now for 4 years, still have stomach and other issues since having cdiff. i still suffer from chronic ibs on a daily basis good days bad days with that...hemmroids are also still an issue...theres still alot of foods that i absolutely cannot tolerate im sure it will remain that way for a long time and still lactose intolerant...many occasions ive had the decision to take antibiotics when i get sick but ya know what since going through cdiff i now demand and make sure my doc checks to see if i have bacteria or viral infections...so i was introduced to steroids and of course otc remedies...anything to avoid antibiotics...and i still take culturelle and florastor daily as a preventative and of course for better health.

peanut
Regular Contributor
Posts: 131
Joined: Wed Oct 17, 2007 2:59 pm

Re: Rita's Case History

Postby peanut » Thu Mar 09, 2017 3:55 pm

update on my case history...since my terrible bout with cdiff in 2007 I remained cdiff free for about 9 years...battling with ibs food intolerences other health issues caused from that terrible beast but overall improved from that year...until 2016 when I had taken different courses of flagyl and steroids over about a 10 month time frame off and on...the reason being is I found out the house I was living in at the time was severly mold infested and I was getting respiratory illnesses often...found this out of course after moving out just my luck...shortly after I moved out I was still battling with a bit of bronchitis so I was given levaquin and a month later I had relapsed after 9 years wow...this second battle with cdiff in 16 was not nearly as severe as the first which lasted over a year and almost killed me...was still bad of course with all the typical symptoms but only needed one course of vanco to destroy it...since then ive been doing okay I assume aside from dealing with all the damage cdiff has left me in its path which seems to be improving as much as it can improve I believe


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