Carrie's Case History

[carrie]

June 2007
As I was busy preparing for a life time vacation experience, my teenager daughters and I were about to pack/Hostel through 3 European countries, I ended up with an inflammed boil on my back and an emergancy root canal. The dentist felt I could have it done without the antibiotics but the doctor still felt I should take something for the boil as I was leaving for Europe in 3 weeks. I hate taking medications and held off but after talking with several people they reassured me that the chance of getting C-diff was low from Keflex. I contined on and was involved in several runs and soccer games during that time. I was unable to get into my GP and had to see a DR. that did not know me. Well 3 days after my 10 day round of Keflex I started feeling wheezy and crampy and had to make 10 trips to the bathroom and the following day there was mucus and spots of blood. I again was unable to get into my doctor and so stopped by a drop in clinic. I told her my story and she agreed that it was likely c-diff. (I had some awareness of C-diff as I work in continuing care). She said to get a stool sample before I left but to start a round of Flagyl before I leave for holidays. I started the meds and left for Spain, having little idea of how serious this was as the Doc and Pharmasist reassued me to go ahead on holidays but to take my meds. My life was so busy trying to get all my work completed at the office and home so I could get away for the month that I had little time to learn more of C-diff. My evenings were spent in several sports as I wanted to get in as many games and races as I could before I left.
Well my vacation was good considering, my symptoms were not really resolving, I was exhausted but refused not to enjoy my holiday, I was meeting some friends in Austria and so I had my husband consult the physician and she sent a stronger dose of Flagyl and he delivered them to my friends. I tried to stay off the meds after my first round but I had pain so bad I started the second round that my friends had brought (thank god they were meeting us half way through the trip).
I got home without incident and completed my 10 days round of meds. Within a week I was passing lots of mucus, cramping and having several painful loose stool. My doc was on holidays so I stopped at the drop in clinic. The doc who first saw me was on holidays so I had to see another guy who reassured me it was just from traveling and that it would resolve in a bit. He stated my stool test had come back negative. I told him I would like to take another one and he stated that was not necessary but since I insisted he gave me a requestition. I held off, trying to believe that he was right and I just needed to rest so I booked a few more days off work and tried to wrap my head around my bathroom issues and since I wasn't having watery diarrhea I was sure it would resolve. I continued to have urgency and some intense pain and so I dropped off three stool samples(all negative). I returned to work and talked to my boss about the stress I was feeling so she said just to work a couple hous and leave. Within an hour of arriving I was in the bathroom several times and was passing blood. I left and went straight out to my doctors office. I was to see the doctor on call but he got so far behind my doctor agreed to see me - finally!! He gave me another requestition and a longer round of Flagyl and said he felt confident this would resolve. The pain was so intense I gave in that night and started the needs. First thing in the morning I took in a stool sample. That weekend I went to emergancy but after an overnight stay and a few more flagyl things were improving so they sent me home and said to wait for the lag results. Finally, finally the results were positive. I continued on a 20 day round of meds but it was an awful 20 days. My head was spinnning, my stomach cramping and I could not get any sleep. I thought I was going to lose it but made it through the 20 days with many prayers and support from family and friends. Throughout the entire 20 days I continued to have loose stool and 4-5 movements in the early day. I knew after the 20 days nothing was resolved and I was agian in the doctors office(mine was away on holidays although he said that after 20 days if I was still having symtoms I could come see him.) Another doctor prescribed me 14 days of Vanco and off I went. I was able to see a GI specialist during that round and he assured me that I was not dying and to just eat whatever I wanted although I had already lost 15lbs(from an athletic 133lbs down to 118lbs). I hated being sick and taking more antibiotics and mentally I was crashing. Near the end of my round of meds I was being to feel better but had a yeast infection (2nd one since starting meds) and knew I had to take Diflucan as the over counter remedys only made it worse. My entire system was out of whack but I was slowly starting to feel better. I was sure I had beat it once I was finished the Vanco but within 3 days symptoms were returning and on the 5th day there was blood and mucus and I became very anxious. Called my doc, he sent another requestition and called the GI. They restated me on Vanco 125x4 and I dropped of another sample but it came back negative(I was only off meds 5 days at that point). The GI told my doc to start a pulsing dose and after I spoke with him they both agreed to allow me to try the one discussed on this site and referred to as Lauryn's pulsing dose. After a month on meds I'm feeling really good, I'm on my 2nd cycle of 4 on/2 off. I have a few uneasy days but for the most part I'm feeling well - very bored though. After consult with my employers and physician it was decided to stay away from the care centre where I work as the goal is to get better and given it is flu season and there are ongoing respiratory infections it was agreed that it would not be condusive to getting better. Thankfully I have about 6 months of accumulated sick time that I'm able to use - I was just never sick much over the last 15 years. I'm delivering flyers in my neighborhood to make sure I exercise(walk)daily. During the rough days my friends have helped out. I'm trying hard not to lose any more weight but my bland diet doesn't allow for extra calories and because I'm having reocurring yeast infections I've cut out most sugars except what is in my fruits and veggies, I do not eat yeast breads but continue with some starchy foods as my diet is so limited already. I have not had dairy in several years due to an intolerance. I can take limited soy but I also have also reacted to it over the years. I also have to cook all my veggies(mostly I eat squash and root veggies) and blend fruits(so far I'm only eating blueberries and steamed peaches pureed in my rolled oats for breakfast)
I will complete my pulsing in early December, if all goes well that will be the end of c-diff. If I'm not so fortunate my GI is willing to do fecal enamas next.
Summary
1. 10 days Flagyl, Mid June
2. 10 days Flagyl, early July
14 days no meds
3. 20 days Flagyl July/August
3 days off meds
4. 14 days Vancomycin, September also started VSL#3, 2-3x daily
5 days off meds
5. Pulsing dose Vancomycin October/November- early December. continue VSL#3, Floraster
Colonscopy December 18th

[carrie]

I can't believe it's been a year since I took my last vanco pill and what a year it has been. My plan back then was to pulse into Dec. 2007 but after seeing my GI in late Novemeber we decided to stop the pulse as it didn't seem to be resolving all the tummy/bowel issues. He said that if I relapse he would do a fecal transplant via colonoscopy since I had one already scheduled on Dec. 18th. Once finished the medication my BM's were still loose, frequent and urgent. I thought many many times I was relapsing but every test came back negative. The day before the colonoscopy I phoned the GI's office and asked the receptionist to contact the doctor and ask if I should still be going ahead with the prep as I had not had a positive culture. She refused to page the doctor and said of course I should do the prep as he would have cancelled the appointment. The next day I show up at the hospital only to hear the doc say there is no reason to do the colonoscopy as I haven't had a positive culture. I was so angry I wanted to scream. He did agree to do a sigmoid that was extremely painful for me - he said my colon was just extra sensitive due to the cdiff battle. The sigmoid showed a heathy colon and no cdiff.
During the next several months I continued to battle with GI issues. I took in several stool samples but they all came back negative. I continued to have blood and mucus quite a few days each month. My periods were thrown off with the onset of cdiff and this also continued so I was given birth control and a plan to do a hysterectomy when I'm ready.
In april I contacted the Probiotic Research Centre in Australia as I was still having many bowel issues and I was just sick of the roller coaster. In consultation with them I went ahead and tried the fecal infusions(my husband being my donor) to see if it would resolve the ongoing issues. They recommend you go back on vanco but I didn't want to touch another antibiotic so we just did the treatment over 10 days without taking the meds prior to the infusions. By this time I was getting really depressed and I cried alot because the symptoms were still there, I had painful spasms, my diet continued to be very limited and the toilet issues were bothersome. My husband took me on a holiday to the coast and this just lifted my spirits and it seemed the infusions were starting to make a difference. I also started taking a soluble fibre product found on an IBS site and my doc gave me a 10mg dose of amitriptyline to try and calm my GI tract. For about two months things were getting better and I started to enjoy my summer. As fall approached things started to go downhill again and by October I was starting to get frustrated all over. The GI increased my amitriptyline to 20mg and I was able to start increasing the dosage of the soluable fibre(acacia) once again as I was still far from reaching the recommendation daily intake.
Well it's been 8 weeks since making the changes and I'm finally feeling better. I still have some bad days but certainly not as frequent as before. Last week I had an awful cold and finally gave in and took some cough medicine - it ended up throwing off my stomach and I had to put up with frequent trips to the bathroom but it passed. I started(for the firtst time since getting cdiff in June 07) going out for easy jogs. I have a new puppy that has given me some extra motivation(my old dog got me through cdiff and then passed away). I was feeling so good one day I decided to go for a harder run but that was a big mistake as I ended up with really bad cramps for a few hours, I guess my body is still not ready. My diet is still limited but the last couple weeks I've tried some new foods with some successes. I really hate the whole IBS thing. I find it really unpredictable and somewhat limiting to my past lifestyle. My biggest hope is that i can go back to running regularly and eating salads, oh yes and of course coffee and a glass of wine!) Right now I have to cook all my veggies and really have to limit the green ones. I'm very grateful for getting past my 5 month battle with CDIFF and I look forward to the IBS settling over the next few years. I was told by a specialist it should get much better between 3-5 years. I'm very grateful to this site and to all those who answered my questions when I was at my lowest time with the battle. Some times I still get freaked out about the future and especially my later years. Crazy but it really scares me thinking that someday when I'm elderly this stupid bug will take my life. Hopefully they will have a cure by then as I've seen to many frail elderly individuals end of life taken over by this bug and unnecessary suffering and a very degrading and painful way to live there ast days of life. Do pray for a cure and for all those who have sufferered from this awful bug. Thank you again to those who offered their compassionate and nonjudgemental support, you were my blessing through this all.