Amy M's case history

[HennyPenny68]

I'm a 39 y.o. female with a history of sinus infections, allergies and was diagnosed in October 2006 with celiac disease. I have also had a thyroidectomy and a splenectomy.

I believe I had a mild case of C Diff during 2005 after I had taken a course of antitibiotics for sinus infections. I didn't know anything was wrong and the diarrhea finally stopped on it's own.

During Christmas 2006 I developed another sinus infection and I took a z-pak. Almost immediately after the first dose I developed diarrhea. I didn't know it could be something more serious other than just a normal case of diarrhea and let it continue for almost 2 months. It was February when I finally went to the doctor for treatment. She tested me for c diff and it was positive. She gave me Flagyl and told me there were other medicines to try if it didn't work. I started the Flagyl and then went out of town to visit my brother who was having a major surgery. The whole time my diarrhea continued as before flagyl and never seemed to improve. In fact, it seemed the more I would take the flagyl the worse my stomach pains developed. I always took the flagyl with meals but it still did not seemed to help. After five days of treatment I went back to the doctor. I had heard that probiotics should control the c diff so I asked her about trying to resolve it naturally with probiotics. She said it was fine for me to try so I started some Culturelle for about 3-4 days. Still no improvement, diarrhea continued. I was getting weak with low grade fever and realized I needed something more. The doctor then gave me Xifaxan. I had not heard of it before but as soon as I started taking it I noticed improvement almost immediately. The cramping was relieved and the stools began returning to normal. I took xifaxan 3 x daily for 2 weeks. I also continued with 1 Culturelle daily and 1 tub of activia yogurt and 1 danactive. When my medicine was finished, things were okay until about a week and a half later. I started gettting some rumbling around and then had some watery diarrhea for a couple days. I was worried it was returning. Instead, however, it seemed that the c diff had to make one last hurrah and my body kicked it out. My stools returned to normal. After all this, it was by the end of March 2007.

I still continued to battle with chronic sinus infections and I knew I had one brewing and in April it eventually turned into bronchitis. I have noticed that I seem to get especially ill with bronchitis and I had a high fever with it. I had it over a week and was no better. I thought that bactrim was supposed to be a "safe" antibiotic to take so I asked the doctor if he could give me that. He said it was fine so I took the bactrim with trepidation. Amazingly, I did not develop c diff after that so I was thinking, "alright! At least I have an option for when I need an antibiotic again."

Fast forward to November of 2007. I developed a sinus infection again. It had an awful odor in my nose and was stuffy and did not feel well. I saw my ENT/Allergist doc and he prescribed Septra DS for 7 days. I told him about having had c diff before and he said that this actually treats c diff. Now I'm not sure if I'm remembering correctly but I think I actually started to develop some soft stools before I took the Septra but I did notice that my stools returned to normal while on it. However, after I finished my round of meds my sinus infection returned. I had the nasty odor back. Also, my stools began to get soft again. I went back to the ENT doc and he said he's been seeing people lately who haven't been able to get rid of their sinus infection. He said he thinks because it was generic and has been questionng where the generic meds were coming from. So this time I asked about taking Bactrim since I had had it in April and did okay with it. He said that was fine and prescribed me Bactrim and made sure that it was name brand. I was to take it for 2 weeks. Immediately after I started the Bactrim my stools firmed up again and did so for the duration of meds. I finished the meds after the first week of December.

Three weeks later the Friday before Christmas (Tuesday) I notice my stools becoming soft again. I was hoping it wasn't returning. My family planned to go out of state for Christmas for 2 1/2 weeks. While out of state my stools became soft and then turned into diarrhea. It also started developing the "smell". I knew it had to be c diff. I didn't want to ruin our vacation for my daughters so I thought if I called the doctor she could go ahead and give me the xifaxan again and everything would be fine. She did go ahead and prescribe it for me but everything was not fine this time. The xifaxan didn't seem to help the diarrhea at all. It only seemed to maybe at least help it not continue to be worse. We did go home a few days early so I could get in to see the doctor. I had been on the xifaxan for 7 days. We did a stool test to check for c diff but since I had been on the xifaxan recently we both figured it would be neg which it was. I told her it wasn't helping so she gave me 45 pills of Welchol 625 mg and was to take it 2 x daily. It did seem like it started to help with the cramping and at first I thought the diarrhea. Only it started coming in cycles. Like it would start to get close to firm then the more times I went that day, the looser and watery it would be. Then it would calm down again and not have to go as often and start that same process over again. This continued until I almost finished the welchol. I decided to call the doc and she said that was too long to have diarrhea and to start back on the xifaxan. Well I waited a few days because actually by the time I heard back from the doc my stools seemed like they were starting to try to firm up again and I was only going once or twice a day. However, over the weekend it seemed like it was headed back toward loose again so I thought maybe I better try to kick this thing the rest of the way out so I took the xifaxan again. Immediately it seemed like it stirred things up. More rumbling. The next day I took the 3 pills like I was supposed to and then bam! Full fledged watery diarrhea. I decided that the xifaxan made it worse so didn't take any more. I saw my doc and she referred me to a GI. She went ahead and prescribed me vanco 250 mg 3 x daily. I began the course of vanco and was hoping to find relief but it seemed to no avail. I talked with my GI doc on the phone and she let me have it for not getting properly diagnosed for treatment but since I started the vanco I had to stick with it. My vanco was to be for 10 days and she said that's minimum. She also said it takes several days for vanco to kick in.

This brings us up to now, Thursday, Feb. 7, 2008. Today is my last full day of vanco and my diarrhea has continued and it still has the tyical smell. I did order some Florastor and started that on Monday, Feb. 4th. I think it has really helped symptom wise. Some of my cramping hasn't been as often. I went yesterday for some lab work and turned in another stool sample. The GI doc said I will have to do a flexible sigmoid if I'm not better. I will call her today for instructions since I'm about to run out of vanco, even though it seems it has not helped.

[HennyPenny68]

I called my GI doc and left a message yesterday to let her know that it was my last full day of vanco and that my stools were not normal yet. She never returned my call. I called again today and her office said that she has my chart with her and that she was at the hospital doing scopes and would probably call me in between scopes. She did not call me today. I had my last vanco pill this morning and since I'm going to have to wait out the weekend, I decided that I will continue with 2 Florastor twice daily, 1 tub of activia and danactive, 1 Critical Care Probiotic, and begin again with the Welchol at 625 mg 3 x daily. I hope that it will get me through. I'm hoping maybe it will help to the point that I can avoid any more vanco and that the c diff will go away. This waiting and watching is so nerve wracking!!

I'm rather disappointed by my GI doc. If I was feeling and doing much worse I don't think I could take it not getting any help. It's so scary because I know this stuff can make you feel bad real fast.

[HennyPenny68]

On Saturday morning I had two watery bm's. This was after a long terrible night of stomach pain. It felt like the meal I ate the night before just sat on my stomach all night long and didn't move and kept waking me up. I would toss and turn and have to sometimes sit up for a bit to try to get it to move down. I was concerened about the watery bm's and decided to call my GI doc. I didn't want to stop the vanco and have resistance develop if this was c diff. She finally called me back and said that she had been waiting on my lab work. She said that the stool sample for c diff came back negative so she didn't think I need to be having any more antibiotics since that's what got me here in the first place. She said she's not convinced that it's c diff and if it's not then more vanco would not help. My white blood cells were moderately high and that one liver enzyme is significantly higher but she's not sure what to make of that yet. She's waiting for a few more tests to come back and said she will call me today, Monday, Feb. 11th with the rest of the results. If I'm not better then I will probably have to have a colonoscopy or flexible sigmoidoscopy done. She said she's hoping that whatever is going on that my body will get rid of it on it's own. As long as things stay mild I don't mind trying that but if it gets worse, the doc is going to have to do something.

I just wish I knew if it was the c diff or not. All the symptoms sure seemed like it. Actually I wish it could be something else that was easy to treat but in my heart I keep feeling that it has to be c diff.

The doc did order me something else I think it's called Cholestid? instead of the Welchol. She said sometimes one works better than others for some people. I haven't got it picked up from the pharmacy yet. She said it's only for symptom control. So far yesterday, Sunday, I had two bm's in the evening and it was "d" but not watery. Although I think it was everything I had eaten that day. I will update on my progress again when I know more.

[HennyPenny68]

I think I'm finally making some progress. Yesterday, my bm was formed so that's moving in the right direction and I only went once. Yayyyy!! At times I still have some gurgling and feeling a little bit like things aren't right but it is manageable. The GI doc finally called me back yesterday and said my final stool test results were in and they were negative. At this point she doesn't want to do any further testing unless I get worse. I've been continuing with the Danactive and activia yogurt, 2 Florastor, and a new probiotic I thought I'd try called Multidophilus 12 by Solaray. I'm not taking any Welchol and have not picked up the Cholestid. I think that if things get worse again I will try the Welchol again until I pick up the Cholestid. Trying to save some money if I don't need the Cholestid.

One side note: I got a sore throat from my hubby. He had it for several days with lots of coughing and phlegm. I just knew I would get it. I tried hard not too. So now praying it doesn't turn into a bacterial infection!

One other thing I was thinking about is the liver enzyme that is high. One possible cause is the gallbladder. I know several who had to have theirs removed and one main symptom they would get was severe pain and diarrhea. I'm thinking of following up with my primary care doctor and mention a possibility that it could be involved.

[HennyPenny68]

So far it's been 17 days off of meds and things are much improved. Stools seem normal and regular. Still have some issues with bloated feeling at times, and gassiness, especially at night. Can't eat too close to bedtime. I am continuing with the 1 Solaray probiotic in the morning and 1 danactive and activia a day. My diet is back to normal as well except I haven't tried any lettuce or a salad yet but will try to incorporate it back in.

I've been able to get over the sore throat and coughing without needing an antibiotic so I definitely consider that a success! For now, I consider myself "cured" of this bout. If things turn out to be otherwise, I will update again.

[HennyPenny68]

July 18th I had to start another antibiotic for a very bad upper respiratory infection. I took Levaquin 1 x daily for 7 days. I really tried to avoid having to take an a/b but my infection was bad and close to pneumonia. My GI doc said it was better to take a short course then have the infection get worse and take a longer course. While on the a/b I started the activia and danactive and also Solaray probiotic and Florastor. I continued this regimen several weeks even after I finished the a/b on July 25th. However, 3 1/2 weeks later around August 20th the "d" came back. Not bad at first, just a little soft but each day continued to get more frequent and looser. I started taking the Welchol 2 x daily but did not seem to help. I called the GI doc and she ordered the stool test. While waiting for the results the symptoms seemed to ease a little bit and did not have to go very frequently. I wondered if I could get better on my own but it still seemed like it hung around. My tests came back + for c diff and my doc ordered vanco 250 mg 3 x daily for 10 days. I wondered if it would be better to see if my body could get rid of it on my own but my GI doc says no it's best to treat it so that's what I'm doing. I'm always a little hesitant about starting the treatment because for some odd reason it seems like my "d" and stomach pain gets worse when I first start the medicine.

I started the vanco on Tuesday, Sept. 2nd and on Sept. 10th I'm supposed to submit another sample to make sure it's gone and won't need more treatment. I'm not sure I understand that logic as I would think the vanco would cause it to be neg. rather than waiting to be off it for 10 days to make sure it's gone but that's what my doc wants to do.

[HennyPenny68]

I finished the vancocin Sept. 11th. My GI called and said my sample submitted on Sept. 10th was negative as I figured it would be. Even while I was still on the vanco my stool still seemed really soft and loose. I still don't feel over the c diff because I still deal with some stomach pain and cramping and have had some full fledged diarrhea. I'm going to wait the 10 days from the vanco and see if things are improving, if not then I will call the GI doc back.

I am now taking 1-2 Florastor twice daily, 1 Sustenex daily and 1-2 Danactive and Activia daily. Occasionally based on symptoms I take the Welchol twice daily. I had to miss some days of the Danactive and Activia due to losing power for several days from Hurricane Ike winds. I could not find ice anywhere to save the contents of my refrigerator!

[HennyPenny68]

I've still been experiencing some loose stools, some semi formed but not normal and some abdomen pain and gurgling especially when laying down. Some days I go 2-3 times a day and sometimes just once. I submitted another stool test October 8th and the results came back negative for toxin A and B. I've been waiting to see if things improve but it seems it hasn't yet. Called my primary care doc and told her my symptoms and she said we could either do another stool test in case the other one was wrong or go ahead and start another week of vanco. She decided to go ahead and do the vanco again. I went to pick up my script from the pharmacy and found out that the dosage is 500 mg 3 x daily as opposed to what I have taken before of 250 mg 3 x daily. I called the doc to make sure if that was what she intended or not because I thought maybe that might be overkill. I haven't heard back from her yet. I've still been trying to do the danactive and yogurt. As far as supplements go, I've been trying differtent probiotics at times. Trying to find something that still helps but might be cheaper but can't say I've really found one. I'm going broke with trying to nourish my gut! I really like the Florastor but it's so doggone expensive!

[HennyPenny68]

My doctor said she ordered the stronger vanco cause she thought that if the c diff wasn't killed the first round that I should take a stronger dose for the second round but if I felt more comfortable taking the same dose she was fine with it so that's what I decided to do. I finished the second round November 3rd. Symptoms are better but I'm still not fully recovered. I believe now I may have IBS. The abdomen pain is better but some days my stools are more formed and then some days I have the "d". I only go about 1-2 times a day so I can't complain too much. I have continued with 1 Florastor 2 x daily and 1 culturelle daily. I have just run out of the Florastor and today is my last dose of culturelle. I'm going to see how things go after stopping the probiotics. If things get worse I will start them again. Sometimes things get better once I stop them so I will see.

[HennyPenny68]

I became ill again in May of 2009. Was having intermittent days of diarrhea and then not. I started having alot of abdominal pain and went to the hospital. They ran some tests, did blood work and found my amylase and lipase was high along with a high alkaline phosphatase. Said I had pancreatitis and thought it was caused from my gallbladder. I had surgery for my gallbladder to be removed but that didn't help all my symptoms. They also did a test for c diff and confirmed that it was positive and started me on treatment for it. I was given vanco 250 x 4 daily for 2 weeks and began on a long taper. The "d" got much much worse for the first few weeks and I began to lose weight. I lost 20 lbs. in a month. I was extremely ill the whole summer long and was in and out of the hospital 4 different times for dehydration. My pancreas enzymes continued to stay high and I needed to have an ERCP to help find the cause. Because of my complicated case, I ended up going to Mayo Clinic in Rochester, MN. I was there for 3 1/2 weeks. I was told that I had ulcerative colitis or crohn's but it could not be confirmed because c diff can also mimic the damage done in the colon. I was taken off all the meds for the uc/crohns and finished the vanco. I had also been taking Welchol along with all the other meds I had been given and I quit it as well. My "d" was about 3-4 x a day and was like that for quite some time. Eventually, after several months it gradually got better. My final diagnosis from Mayo is that I have mild chronic pancreatitis and bronchiectasis. They were not able to determine what caused my pancreatitis but a big suspect is meds. One possible one is the Welchol with having to take so much to help the c diff.

Beginning today I am starting another a/b for an upper respiratory infection. I am praying that c diff doesn't get stirred up again. My doctor gave me doxycyline 100 mg. 1 x daily. I have begun taking Florastor 2 2 x daily as well as 1 Culturelle daily.

[HennyPenny68]

Well the doxycycline I took started causing me to have diarrhea again. I thought for sure I had c diff again. Was tested and it came back negative. The diarrhea got worse and I was going 7 - 10 times a day. My primary doctor said I need to go see a GI doctor but they couldn't get me in until February 2nd. I had to spend my Christmas feeling terrible. I kept trying to hold on for my GI appt but kept getting worse. I woke up one morning with both of my knees excruciatingly painful and hugely swollen. My doctor said I needed to go into the hospital. The only thing that relieved my knee pain was Dilaudid. I started running a fever and had an extremely high white blood cell count, 47. I had several doctors coming in to see me, infectious disease, GI, hematology. They did lots of tests and the only thing they said that I had was either ulcerative colitis or crohn's. They couldn't make up their mind which. Either way, they didn't think that as sick as I was that it was all from irritable bowel disease. I stayed in the hospital for 25 days, was on a feeding tube for a few days and even had a bone marrow test. They finally did another colonoscopy and determined that I had Crohn's disease. I was put on Asacol, Welchol, and prednisone. My primary doctor told me that I still needed to go to Mayo again to make sure there wasn't anything else wrong so in March I went back to Mayo. They also ran a bunch of tests and concurred with the Crohn's diagnosis. They believe that my high white blood cell count was due to the fact that I don't have a spleen to help control it from going so high. In the hospital, I was also treated for c diff again, just in case it was still there but not showing up. I have found that anytime I have to take antibiotics, it causes me to have a flare and so even when on vanco treatment, my diarrhea continues.

I'm doing much better now but am still not fully recovered. I still have a few bowel issues but hopefully I am on the upward swing.