Sophie's Case History

Guest · Postby **Guest** » Mon Dec 16, 2002 2:38 pm

Saturday october 12th 2002 I gave birth to my precious little baby Emilie. I was so happy I could not wait to leave the hosptital get home and start to be a "mom". It was the happiest day of my life. Three days after coming back home from the hospital I started to have burning sensation when I went to the bathroom...it was getting pretty bad and I had a feeling that my wounds were infected. I called my midwife and she prescribed microbid over the phone, convinced that I had a urinary tract infection, she asked me to bring in a urine sample the next day. I told her I did not think it was urinary tract infection but she insisted it was. The pharmacist told me that I would start feeling better the next day. Three more days went by and I still did not feel better so I took an appointment with the midwife for the next day. To my surprise she said that the prelimanary tests came back and that I did have urinary tract infection and did some more smear to rule out other types of infections...this time she prescribed cephalexin for the urinary tract infection ...It did help but not completely. Six^ days later I get a phone call from the midwife...other tests came back... I do not have urinary tract infection after all but my wounds are infected with gardnella. This time she prescribed 7 days of clendamycin. She wanted me on flagyl but changed her mind when she found out I was breastfeeding. Before I took it I read the side effects and I was very scared to take it. I called 2 different doctors and a pediatrician...I wanted to make sure that the pseudomembranous colitis was not a common side effect and wanted to make sure that the antibiotic would not hurt my baby. The doctors said that in order to get pseudomembranous colitis I'd have to take the antibiotic for a very long period of time. The pediatrician told me it was not going to hurt the baby. One week after I finished the clendamycin I saw bloody mucus in my stools. I called my primary care practitioner and he said not to worry that pseudomembranous colitis creates very watery diarrhea, which I did not have. Three days later there was still mucous in my stools...even more than before. I went to my doctor and he still said it was not colitis that I probably had IBS , I insisted that I took clendamycin and that it was one of the side effect but he told me to go home and that if I started to have diarrhea then they would take a stool sample. Two days later it got worse but still no diarrhea. My husband called the doctor's office and spoke to a nurse. she talked to my doctor and said that he would refer me to a specialist but still did not ask for a stool sample. We waited 1, 2 , 3, days ...no call from a specialist ( the nurse told us that the specialist office would call to schedule and appointment). We called the doctor's office again and told them that the specialist had not called yet. This was another nurse and she sounded surprise that my doctor wanted me to see a specialist because he wrote " irritable bowel sybdrome " in my file!!! I assured her that the nurse I had spoken too last week told me that the specialist would call for an appointment. She said she'd call me back...she never did. The next day I started diarrhea, not too bad but loose stools. This time my husband took control of the situation. I am a very shy and quiet person and people tend to walk over me because of that...my husband is the opposite. My husband called and demanded to talk to my my doctor and told the nurse that he was not happy with the way they have been handeling my case, he also demanded that they did a stool sample.Turned out my doctor was on vacation that week and that somebody did not do his/her job...my file was not on the pile for a referral to a specialist. The nurse told my husband that my file would be top priority and that I would get a phone call from a specialist office the next day ,meanwhile I was asked to bring in a stool sample. The next day ...still no news from the specialist. At the end of the day, when we brought my stool sample my husband went right to the nurses station and yelled at them ...they got me an appointment right then with a specialist for the following tuesday. Two days later I got a phone call from a nurse telling me I had to pick up a prescription because my stool sample came back positive for c.diff. The prescription was given by a doctor I did not know because mine was on vacation. I was told I was to stop breast feeding and start the flagyl immediatly. I was devastated and scared, I did not know anything a bout c.diff,colitis and all that stuff. I did not know if it was curable or if it would just get worse and if it would lead to cronh or ulcerative colitis and these types of disease. Nobody seemed to be able to helped me when I asked questions...they all had different explanations for it anyways and it just looked like I was bothering them. I was extremely depress and weak from not eating much and trying to take care of the baby. I finally called my mom and a friend of mine and asked them to come down from Quebec to help me for a while.It helped me get some rest and get some of my sanity back....at that point I thought I was going to die!! I took the flagyl 5 days ...my stools were a lot better but I had stomach pain and my liver was hurting too. I saw the specialist the following tuesday and she switched to vancocin ...125 mg every 6 hours for 14 days. You should have seen her expression when I told her all the antibiotics the midwife had prescribed me...she shook her head and said " No wonder you developped c.diff...you had enough antibiotics to trigger it in anybody". She also told me to wash my hands very carefully and be extremely careful when handeling the baby because c.diff is contagious ....no one bothered to tell me this at my doctor's office. By that time I was angry, scared and very depress...I was affraid I would not be able to get rid of that nasty bug even though the specialist told me it is very treatable. I felt a lot better with the vanco but in the middle I started to have loose stools again, they were formed but flaky and would come apart when I flushed the toilet....I thought it was just a side effect from the vancocin . I finished the vancocin last tuesday (december 10th)and was happy that I would be able to start breasfeeding my baby again by saturday...she has not been doing too well on the formulas, constipation and pain when she passes a stool...she cries a lot more now. Saturday morning I was thrill to see that Emilie took my breast right waway , I was scared she would not after being bottle fed for almost 3 weeks. My happiness faded that very same night when I found bloody mucous again in my stools. I called my specialist in a panick but she was not on call, another specialist from her office called me back and he prescribed more vanco, this time 250 mg every 8 hours for 21 days. We were lucky to find a pharmacy that had the vanco since there seems to be a shortage of that drug. I started it on saturday night, today I don't see any blood or mucous but my stools are still kinda very soft and flaky and I go 3-4 times a day, may be it takes few days to work I don't know. Yesturday morning (sunday) I had a phone call from the pharmacist. He apologised for calling, he said he was concerned about me and wanted to see how I was doing. He told me that the midwife prescribed too many antibiotics when she thought I had a urinary tract infection. He said she should not have prescribed those drugs without nowing what was wrong with me first. He told me to eat lots of yogurt and to get a good acidophilus supplement that I could not overdo it at this point because my intestinal flora was so messed up.He also wanted ot reassure me that it is a treatable disease but that the bug is stubborn and sometime it takes more than 1 or 2 treatments to get rid of it. I think he feels bad for me, that's why he called. That phone call alone made my day....none of the many doctors or nusrses I have seen ever bothered to called and see how I was doing. I know it is not their fault I am sick but doctors don't seem to think we are human....a little warmth and compassion helps a lot I think...doctors are so sold. It felt good to see that someone from the medical field, a total sranger for that matter, ( my husband picked up the prescription and the pharmacist does not know who I am ) cares about me. I also forgot to mention that while on vanco the first time, I also saw a naturopath who gave me a bunch of things to take to rebuild my flora. Apparently it did not work yet but I think it is because the acidophilus she gave me did not have a chance to rebuild my flora since it is a powder form and it probably gets destroy my the antibiotics. I ordered culturelle and florastor yesterday and I hope it will do the trick. The naturopath also gave me a very strict diet to follow and I ahve been doing it since I started the vanco the first time. She also told me to manage my stress because stress lowers your immune system. I hope that I will get rid of that bug soon ...I look at my daugther and I cry because I am not the only one suffering from it , she is too. Everybody else is taking care of her but me because I am too weak to do it. I sometimes talk to her and apologise that her mother is not able to take care of her the way she should. I have good days when I feel very positive and others when I think I will never get rid of this. I do not wish this to happen even to my worse ennemy. This site has been a great support for me for the past few weeks and I found a lot of much needed information about c.diff...information that doctors either don't have or are too busy to give me. Anyone who wants to contact me just to chat about this or vent feel free to email me at <a href="mailto:fifure30@yahoo.com">fifure30@yahoo.com</a> [Guest Posted by: 'Sophie']

Guest · Postby **Guest** » Tue Jan 07, 2003 4:42 pm

I have been off my second round of vanco for 3 days now. First 2 days were ok and had normal stool for the first time in 2 months this morning. But few hours later went again with soft/loose fuzy orange stuff . Hope it is just something I ate that did not agree with me. I am taking lots of culturelle and florastor and watch what I eat. I also do yoga and exercise for stress management because I have been so stressed out since this whole thing started. [Guest Posted by: 'sophie']

Guest · Postby **Guest** » Fri Jan 10, 2003 10:15 pm

BAck to square one!!! I went to bed wednesday night feeling ok and woke up at 4am thursday morning to feed my baby and suddenly had the urge to go . I went twice with diarrhea. I thought I was just being nervous because I was going to have the results of some biopsies I had done on my cervix before the holidays...my pap smear came back positive for abnormal cells so they wanted to check what was going on. Anyways...went back to bed and an hour later had to go again and went all morning every hour with diarrhea and mucus again...a little blood once. Called the GI, was put on vanco 125 mg 4x day for 14 days. I asked why lower the dose and the lenght of treatment this time when obviously the 250mg 3x day for 21 days did not work??!! She said she was giving me vanco just so I can get thru until I have my colonoscopy january 30th. She said she does not like to give vanco and that vanco was not the answer...I am wondering what she'll give me next time because I don't tolerate the flagyl at all. I have a feeling I'll have to search for another doctor, I wanted to try to talk her into letting me do the pulsing if I were to relapse but if she does not like to give the vanco I dont see why she'd let me take it for that long while pulsing. Will see what happens. I also found out that morning that I have mild dysplasia on my cervix which is considered precancerous cells but my gyn said to get better with the c-diff first before we decide to have it removed or not. It is not something to really worry about right now she said, we just need keep an eye on it for now. [Guest Posted by: 'Sophie']

Guest · Postby **Guest** » Thu Feb 06, 2003 5:40 pm

It's been 2 weeks since my last vanco. The last pill was taken january 23. I had the usual mushy orange stools and, as expected, a bout of diarrhea four-five days after stopping it. I thought I had c-diff again but decided to chill and see what happened since my stools were not very different than when on vanco, just a little more frequent. Few days before I finished the vanco I had terrible pain in my upper right abdomen, 4 days in a row. I called my GI and she ordered blood test and sonogram...The sonogram showed I have gallstones. One week later She said the blood test came back abnormal and she felt I had a stone stuck in a biliary duct. She wanted to do an ERCP but since I told her I had not have any pain since the last episode ( a week ), she thought it was strange and that may be I passed it. She decided that we would do another blood test same time I had my colonoscopy ( which was last week). I had colonoscopy which showed nothing, she said my colon was fine. I asked her if she would be willing to do the pulse dosing in the event that I would relapse and she said no. She also said that she would not give me vanco but flagyl because I had too much vanco already ?! Anyways...my second blood test regarding the liver showed a "little above average" but better than the first one taken one week earlier...that's what she said. She still wanted to do the ERCP and shedule it for today. Now, I thought that was a fairly simple procedure but I researched it and found out that there is a risk of different complications and I did not like them . I decided to be brave about it and forget it and hope evrything would be ok. When I arrived at the hospital today, I got undressed and as they were preperaring me for the procedure they had me sign a bunch of papers and one said that I would be given antibiotics thru IV. I looked at my husband and started crying and told the nurse I had c-diff and did not want the antibiotic. She asked another nurse to come in and started to tell her that I thought I had "possibl;e c-diff" My husband and I both screamed at the same time that I HAD c-diff, no doubt about it and that I had three round of vanco and been battling this for almost 3 months now. So they got the doctor on the phone and my husband went to talk to her. She was pissed I did not want to do it and tried everything. She said she would give me flagyl to take home so it would "prevent" the c-diff to show up again. I said no...She said she would do the procedure without the antibiotics which she said was very risky but she would only give me antibiotics if she had to cut me to remove a stone...I said no. She then decided to come in person and try to talk me into it...she was very unhappy but I just had a gut feeling that I should not do it that I did not want to risk getting it again just to see "if" may be I have a stone stuck in my biliary tract. My husband then had the good idea to ask her the actual numbers on my blood tests just to see if it was worth it to us to risk doing the procedure. She said the first one was 3 times more elevated than a normal test but the second one was "minimaly" more elevated...those were taken 2 weeks apart. My husband suggested that, since I am not having pain anymore since the past 2 weeks and since the last blood test was significantly lower then may be I did indead passed it on my own . He suggested that we do another test in a week and see and then decide with her what to do. It is the first time in my life that I stand up for myself ...I never thought I would do that , I am so shy and quiet normally but I had this strong gut feeling not to do the procedure...not this time anyway. I was lucky that one of the nurse thought same way I did. I kept apologising to her and then she said " If you feel in your gut that you should not do it then don't do it ". I am still a little shaky about the whole thing, I am usually not this assertive especially not with doctors especially when they make it sound so bad if you don't o what they say but I decided for once that I should listen to what was inside of me. Not listening to my gut felling is what got me in trouble with the c-diff in the first place.....I felt I did not have urinary tract infection when they gave me antibiotics that started the c-diff and I knew something bad would happenned if I took the clindamicyn but I did not listen to myself and I got sick!!! Now lets hope the c-diff is gone for good...I have been taking 1 culturelle every four hours during the day and same with florastor plus a regular probiotic bought at the health food store once a day before bed....Nobody told me to do that I just decided on my own to do it. From my naturopath advice I carefully watch what I eat , everything is home made, no dairy, no wheat, no yeast. I don't seem to be able to digest vegetables that well but I have been making myself fresh juice every morning with my juicer. Carrot, celery and apple juice mix together. The carrot juice heals the intestinal mucosa and the apple and celery is for the gallstones ( I read somewhere it helps disolve them...can't hurt ) I eat yogurt every morning and drink one ounce of aloe juice before meals and before bed time...I use "forever living" brand. That also is suppose to heal the mucosa. I take 30 drops of "kyolic" liquid garlic in my carrot juice every morning...suppose to kill bacteria. Last week after my colonoscopy my Gi prescribed Questran for me, she said it would make my stools more formed but I have not taken it yet because my stools have improve. Today she told me not to take it because the c-diff was gone. She just assumed that because my stools were formed it is gone. She won't do a culture because she said there are a lot of false negative and that she goes by symptoms. I am affraid she won't be as willing to treat me now that I went against her advice with the ERCP and it takes so long before we get a refferal to a GI here !!!! I guess I will never know for sure if it is gone or not...I am praying very hard that it is. I will keep you posted. [Guest Posted by: 'Sophie']

Guest · Postby **Guest** » Fri Feb 28, 2003 7:22 pm

It's been 5 weeks since last vanco now, thought I was finally over it and sun would shine again!! I was waiting for the magical "six weeks free of symptoms" before writing my update but did not make it. I had a blood test done a week ago to see if my liver enzymes got down.Saw GI specialist tuesday night and everything looked perfect she said...according to her that means I passed the gallstone on my own and do not need to do the ERCP for now...yeah!!She said she thought c-diff was gone because stools were formed and had no symptoms she still does not want to do stool culture , she said I could test false positive...she still does not want to do pulse dosing if I relapse. I saw naturopath 2 weeks ago and she said the orange stools were because my bile is of poor quality and she thinks it is because of all the medication I have been for the past 4 months. She gave me homeopathic stuff to take for gallbladder and stool color went back to normal after only two days...I had brown stools for the first time in more than 3 months!! I was so happy, everything kept getting better. Then last sunday we went over my in laws and my mother in law cooked plain turkey and potatoes so I could eat like them. Immediately after I started to eat I started to have noises and rumbling in colon. Just thought the potatoes did not agree with me because had not eaten them in a long time. I kept getting those rumbling and gas after each meal, almost immediatly after the first bite but no change in stools. I thought may be it had something to do with my changing probiotics....I ran out of culturelle thursday of last week and had to buy nature's way brand because they were back order from the site I get it. I finally had wal mart order one box for me to make me last until I get my order (it's been 2 weeks and still don't have it by the way). I switched back to culturelle wednesday morning when I got the box. Wednesday morning I had a little of the orange not formed stools and floating fuzzy stuff again and then had 2 "normal" stools later that day. I was freaked but kept trying to keep my cool and think about the 3 days rule. Yesterday morning it was back to brown but weird looking , fuzzy and semi formed and some floating again. This morning was formed but very pale brown and looked very very soft, just did not look right, came appart when flushed the toilet. I just feel it's back. Last night I lost it....made my husband cry because He says he's never seen me so depress. I have a baby to take care of and I finally thought I could enjoy her and be really there for her and do all the fun stuff mommies do with their babies. I had a 5 weeks break and out of nowhere it all goes away. I am so angry, frustrated and depress. I feel like I was given a nice toy to play with and keep( improvement for 5 weeks ) ...and then someone took it away from me, just like that, gone!!! I just don't know what I will do...I sure have to find another doctor as mine is just so narrow minded when it comes to c-diff. When I told her how will we know if it's gone for good since you don't want to do a culture she answered " You had one round of flagyl and 3 rounds of vanco... that is more than enough to kill c-diff" I am thinking about doing the infusion..I email DR. borody's nurse but I think it will be a long time for me to find a donnor as my husband has health problems that I think could be passed on to me if he is my donor. I also don't know if I will be able to find a doctor who will agree to write up a test cultures for the donor stools and all the medical stuff I will need. My brother told me He would be my donor if He can but He lives in Canada which makes it hard since I live in New York state. It is just so frustrating!!! I will keep you posted on how I am doing and what I intend to do!! [Guest Posted by: 'Sophie']

Sophie's Case History

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