Elisa's Case

[elisa]

Until I found this forum I was made to believe I was the sole 23 year old female who couldn't get rid of C Diff. It's a big relief to know that I'm not alone.

In late October 2010 I had a horrible upper respiratory thing going on, not quite sure what it was, I went to Urgent Care (I couldn't establish a new PCP with my new insurance, nobody had any room for a new patient) and was put on Doxycyclin (sp?)... I finished my whole round of Doxy and had no improvement... I went back to Urgent Care and this time the doctor put me on, wait for it... Clindamycin. I had left my job on October 25th and my insurance was ending on October 31st. I finished the Clindamycin and felt pretty okay for a couple of weeks. Mid November I went out to eat at a popular restaurant in my area, when I got home I had loose stool, I summed it up to the food I ate. Needless to say my symptoms got gradually worse throughout that first week. My new insurance wasn't going to start until December 1st so my hands were tied--I was just hoping that it was a bug or food poisoning and would pass.
My symptoms got so bad that I was afraid to eat or drink anything. Anything that went in came out... almost immediately. I started having mucus in my stool and got really scared and knew something wasn't right... but without insurance I really couldn't do anything. I lost about 15 pounds those two weeks, I looked emaciated.
On December 1st 2010 I took the morning off of work so I could go to Urgent Care with my new insurance. I saw a great PA who ran a whole gambit of tests, one of the first things she mentioned was C Diff. I turned in a stool sample while at Urgent Care, wasn't hard to do--I was having at least 1 BM an hour, even throughout the night. She ordered an ultrasound to make sure there wasn't something more serious going on with my organs. The next day I went in for the ultrasound and shortly after leaving found out my tests came back positive for C Diff. That same day I started taking Flaglyl for 10 days. I decided to follow up with my long time family doctor a couple of days later to make sure my diagnosis and medications were correct. He assured me everything was just as it should be and I'd be better and over this after the medication was completed. I continued taking that horrible medication even though it made me feel nauseous, dizzy, and exhausted all the time. About two days after finishing the medication my symptoms came back FULL FORCE. My doctor ordered a stool sample, the results came back positive the next day. I was put back on Flaglyl for 10 days, this time PROMISED that my condition would improve and I'd have C Diff beat once and for all.
Christmas came and passed, I finished the medication and was excited I'd be able to drink on New Years! A couple of days later that horrible scent came back, the cramping, the gas, the loose stool... I called my doctor and his response was, "It can't be C Diff, you'll just have to let this run it's course it'll get better." I was not happy with this statement and knew that C Diff was indeed back in full force, the constant BM's with D and M proved it. I established a new PCP at a larger clinic to get help. She immediately put me on Vanco for 10 days coupled with Rifampin. I started feeling better and thought this was the miracle drug and I was finally cured! As soon as I finished the vanco the symptoms came back full force... again. My new PCP ordered a stool sample and it came back positive for C Diff. I became nervous because I was going to be out of the country for two weeks and really didn't want to be in a foreign country and have C Diff come back and not be able to get quality care. She decided to put me on the pulse taper as it would last the entire course of my vacation, minus Rifampin--she knew I was going to be drinking alcohol and didn't want to jeopardize my liver. She also sent me on to an ID as he had more knowledge with C Diff.
I met with the ID a couple of days before departing and he reassured me that the medication I was put on was exactly what he would have done. I went on vacation and had a follow up appointment with him when I returned in February and told him I was feeling better, which I was! He decided to order a stool sample to see if I still had it... the test came back negative! Fast forward to a couple of weeks and my symptoms came back--full force... out of the blue. I called my ID and he said he didn't think it was C Diff since two weeks ago the test was negative and that I was just anxious and making it worse. His advice? Take immodium to help stop the BM's. The symptoms progress and get worse and worse--I finally called him and said I couldn't live in this state, he had to do something for me. He ordered me a stool sample, which obviously came back positive. He decided to refer me on to a GI. I met with the GI a week later and she set up a colonoscopy for the following week. Unfortunately for me, the doctor performing my procedure ended up being a very handsome guy! After the procedure I was told everything looked great and there wasn't too much damage done! What a relief! About 3 days later though I got a phone call from my GI and she informed me that the biopsies came back showing I had developed Microscopic Colitis. Her plan of action was after my last taper of vanco I was going to start taking Entocort for the colitis and see if it can help control my stomach. She also put me on Hyomycin (sp) to help with the stomach spasms--this medication causes me to get extremely dizzy and lethargic, so I don't take it at all.
I got extremely nervous about not continuing a second dose of vanco, which was recommended by the doctor performing the procedure, and decided I'm tired of living in confusion and uncertainty. I've had 4 or 5 doctors at this point tell me different things, good advice, bad advice, no advice. I took matters into my own hands and requested an appointment at the Mayo Clinic... about a day after I submitted my request they called me and offered me an appointment the next week... This was about 2 weeks ago that I went to the Mayo Clinic in Rochester, MN. I met with a team of doctors and was told to stop taking the Entocort immediately as it was an immune suppressant and treating colitis before treating the C Diff was just asking for the C diff to keep destroying my intestines/colon. She ordered a stool sample and a bunch of blood work. I sent the stool sample back in (in the mail, SO awkward) and a couple of days later (last sunday) I got a call from one of the doctors and was informed that it was still positive for C Diff and to start taking Vanco again. The consulting doctor, or lead doctor on my case, called me on Monday and informed me of the plan of attack... it was an aggressive tapper of Vanco: 4X daily for 14 days, 2x daily for 14 days, 1x daily for 14 days, every other day for 14 days, every 3 days for 14 days... she also informed me that the Rifampin was not the right medication that I should have been on, it should have been Rifaximin, and that in two weeks I would be starting that. She also said in two weeks we'd be changing my probiotics, I'm currently taking florajen.
On Tuesdayy my symptoms got EXTREMELY bad. Pure M all day. Every hour. I called her on wednesday and told her about it... she then put me on Cholestyramine to help bind everything up. I currently am taking it once a day and it seems to be working for the most part... however still a lot of D and M and horrible cramps and pain.
I am supposed to call up to the Mayo to speak with her on Wednesday to talk about how I'm doing and to start taking the Rifaximin.
We'll see how things go! I'm hopeful that I'll be able to get this under control with the guidance of this doctor.

[elisa]

Ayyy...
Well, I started tapering vanco last week, I'm down to two times a day until the 7th. I was having solid BM's about a week and a half ago and was excited... but since starting the taper it's started to become soft again.
I speak with my doctor at Mayo on Thursday, we'll see how I feel by then! Maybe it's from something else? I'm so paranoid!

[elisa]

Things aren't so bad right now. Just today I started to taper down to 1 vanco a day.
I actually feel better. I don't have the severe cramping, bloating, and gas that I've had before. My stool is still soft, but I can handle that as I'm only going once or twice a day.
I speak with my doctor at the Mayo clinic tomorrow about how things are going. Last time we spoke she expressed interest in running a couple of tests the next time i make the trek up there. Unfortunately it's about a 4 1/2 hour drive!
I truly hope things are getting better and it's not just going to resurface again!

[elisa]

This disease sure does take me on a ride...
Since I started to taper down to one vanco a day my symptoms have gotten worse... nauseous, bloated, gassy, exhausted--the only thing missing is the frequent trips to the bathroom.
My doctor had said if my symptoms got worse at any point to call... so i called her yesterday and she bumped me back up to taking vanco 2x daily for two weeks--she's consulting with other doctors on if I should start rifaximin now or wait.
There has got to be something out there to finally eradicate this horrendous disease!!!!! I want my normal life back!

[elisa]

So, my doctor put me back on vanco 2x a day for a week... earlier I said two weeks, whoops. She also told me to start taking the Cholestyramine again.
I'm not sure if the side effects I'm having right now are from C Diff or the medication... but I'm bloated, gassy, crampy, and quite a few trips to the restroom.
All i'm going to focus on right now with work and yoga... if anything I think sweating in Bikram Yoga is forcing these toxins out of my body.
I'll update if there's any real news!

[elisa]

I'm down to taking my Vanco once every 3 days... and I am actually feeling good.
I'm not constantly exhausted like I was, I'm going to the bathroom once a day maybe twice, and it's pretty solid. I'm also not feeling bloated and crampy constantly like I was.
In about 3 weeks I will be finished with vanco and that will be the true test. The last few times when i finished vanco about two weeks later my symptoms returned.
I'm remaining positive about this!

[elisa]

Yikes.. didn't realize how long it's been since I've updated.
Life has gotten chaotic.
Onto my C Diff.. or possibly lack there of?!
Tonight is my last night of taking xifaximin (rifaximin), I've been taking it twice daily for the past 14 days. Fortunately my symptoms during this period of time were non existent for the most part! The last couple of days I've been getting a little crampy and bloated, but I'm trying really hard not to freak out about it. My stool has moments where it's firm and then moments where it's extremely soft. The other day I had about 5 BM's in one day, my diet has been the same so I couldn't quite pinpoint why...I've also been EXHAUSTED lately. Maybe stress from life? I can honestly say that this past year has been the hardest year of my life.
I've been playing phone tag with my doctor from Mayo and hopefully will be able to actually speak with her tomorrow. I'm supposed to go up for some testing and procedures after finishing this last antibiotic. We're going to check and see if I still have Microscopic Colitis, or if that has subsided as well, and also to see how my colon and intestines are doing after 9-10 months of fighting a pretty horrible disease.
I truly hope this nightmare is behind me. We will find out within a couple of weeks if my symptoms don't come back and testing comes back normal!
Ahh, my fingers are crossed--but I'm trying extremely hard not to get my hopes up too high.

[elisa]

Welllll... I go up to the Mayo Clinic next Thursday. I've got testing in the morning then a procedure in the afternoon. Let me tell you what, having C Diff sucks for another reason... you're usually the LAST appointment for procedures. With my colonoscopy I was unable to eat from about 2pm one day until about 5 or 6 pm the next day... this time is a little better, I can eat until midnight but then my procedure isn't scheduled to start pre-op until 2pm. :(

I've been exhausted. Beyond exhausted. I am a full-time student, work 50+ hours a week, and have been dealing with a loss of a friend, then a family member, and now another tragic accident in my family. It's been a hell of a summer, literally. A hell.

Lately the exhaustion has gotten unbearable, lots of naps for this girl! My stomach? Well, stool is getting soft, I'm having the infamous popcorn toots, bloated after eating, nauseousness around the clock, the whole 9 yards.

I'm remaining positive though. Things could be and have been worse! I've made it through a lot of hard times this summer, i'm not letting this impact my positive outlook. As skeptic as i am of doctors, I am trying my hardest to have faith in the wonderful doctors at the Mayo Clinic, may they cure this nasty little disease!!!

When I am finally done with C diff I will post my doctors name, assuming she gives me permission, so you all can have the joy of working with an amazing person. It's been a series of trial and error for her and I with medication, and honestly, I wouldn't have it any other way. She actually listens to me, takes into account how I say the medication impacts me, and asks me my input. I truly feel like I'm able to sort of control my care and give input to hopefully help her better treat patients in the future.

After next week I will update... Again, appointments all day thursday with a procedure thursday afternoon, then Friday appointments some more!

Wish me luck!

[elisa]

I just got home from Mayo.
I had quite a long couple days and am exhausted... Yesterday I turned in a stool sample bright and early, then proceeded to fast all day until my scheduled enemas, two. back to back. ouch. After that I got to go check in for my flex sig. Well, the clinic was a bit backed up, which I kind of expected--it's such a huge facility! I was supposed to be in procedure at 3:00 I didn't get into it until about 4:40, but it's okay, I have gone a lot longer fasting so this was nothing.
Woke up from my flex sig in some pain, pretty much just pent up gas, and could barely walk... but I didn't want to be in the hospital any longer, and quite frankly I wanted peanut butter M&M's and a diet coke.
Went in today to meet with my main doctor to go over the results of everything annnnnnd... Stool sample came back NEGATIVE for C diff. YES NEGATIVE, she said there's a 99.97% chance that it's a correct reading. I of course asked if it could possibly be a false negative. She hadn't received the results from my biopsies from my procedure but would call me to let me know what they showed.
Well on my way hoem I got the call... no more colitis!!!!!!
For now it seems this nightmare is in my past!

[elisap]

Just thought I'd update.
As far as I know I am still C Diff free. I had a scare back in November where I was convinced it was back, but I just calmed myself down and waited a couple of days and I was back to my new 'normal.'
Thankfully I haven't had too many issues. My body rejects dairy now, which I've always been a little lactose intolerant, but now it's terrible... But, if that's the price i have to pay and can rest assured that I'm C Diff free, I'm okay with it!
I was pretty nervous for a while, I was under a lot of stress with working full time, attending school full time, and trying to plan a wedding... However, I'm dealing with the stresses of life a lot better than I thought I would ever be able to and have not relapsed!

I truly hope I never have to endure another bout of C Diff and can keep this disease away. I am now offering my two cents whenever anybody asks me about antibiotics. Granted, i'm not a licensed medical professional, but I can share my story and hope that people rethink taking antibiotics unnecessarily.