Round One: My First Battle with C-diff!--2007-2009

As originally stated, my problem started with a sinus infection, rounds of antibiotics, and then the diagnosis of c-diff.  I was extremely nauseous and had bloody diarrhea with severe stomach cramping. At first I was given a prescription for metronidazole also referred to as  flagyl which is an antibiotic (go figure)   and very quickly began to feel better.  Home free, I thought! But all too soon the symptoms returned, and I was running a fairly high temperature.  So I was given another round of flagyl; however, this time it didn't seem to help me at all. The next drug I was prescribed, and the only other one available at the time  for fighting c-diff, was Vancomycin. This antibiotic was very expensive which prohibited many patients with c-diff from getting it. At first it seemed to tame the disease but it was the lull before the storm. By now, after doing research, I had determined that I was in the 20 to 30 percent range that didn't get well after taking these drugs--at least not right away. The "not right away" turned into months and then years.

How do I begin to describe the nightmare? Just thinking about it causes my heart to race and the panic to resurface. My faith in Jesus Christ and my wonderful husband Jack (John) kept me going when at times I wanted to give up.  Whether I was being rushed to the hospital for dehydration or bedfast and burning up with fever and pain that tormented my body, Jack was by my side, encouraging me with his words, prayers, and actions. There were times he was afraid that he had lost me as I was unresponsive and barely breathing. In or out of the hospital, he would stay up all night bathing me with cool cloths, trying to bring down the fever. All the time, he would pray.


When the worst of the worst became better, thanks to the continued and increased dosage of Vancomycin, a different medicine that finally relieved some of the nausea, another that helped the diarrhea, and yet another that helped to control the pain, I spent part of the time on the couch in the living room. This was a big step and Jack and I were both encouraged. I weighed around 100 pounds and had no appetite, so if I could force down a few bites that was progress.  I was taking probiotics as suggested by my doctor. I spent a little time on the computer so I could participate in a c-diff support group and this was both helpful and frustrating. People that I thought of as online friends were experiencing their own horror stories and some of them ultimately died. When this would be reported, all of us would grieve but would continue on offering help to each other about what probiotics, other natural supplements  or meds were providing relief. Some members finally beat the disease which we called "the beast."

Would I ever get over the disease myself? I didn't know. As a person of faith, I knew that I would live either on earth or in Heaven. I had a taste of the afterlife as a pre-teen which had impacted my life in a many ways. To read click on http://c-diffhelp.blogspot.com/p/blog-page.html .

As the days passed--some good and some bad--I would be blessed when Pastor Bert from our church would visit me, sharing communion with my husband and me. Just his presence cheered me up as we discussed faith, healing, and happenings at the church.  Because my husband and I couldn't attend, he would always say that we were missed but that with my weight loss there was a lot less of me to miss. He has since retired but I will never forget his faithfulness.  Not only could we not go to church because of my condition but my husband had to stop teaching a Bible Study for a men's group that was part of a larger organization. He so loved everyone in the group and enjoyed teaching as he didn't use store-purchased lessons but prepared his own material after much research.  I was so frustrated that I  was stopping him from going but I was not safe to be alone.  I was terribly weak and could have easily fallen if I had to get off the couch or out of bed for any reason. Though I saw my primary care doctor and specialists, the c-diff lingered, doing damage to my body that would haunt me for years. When I could not pray because of being too sick, I would recite my two favorite Bible verses over and over in my mind and draw strength from the words:  Galatians 2:20 I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me. 2 Timothy 1:7 For God has not given us a spirit of fear, but of power and of love and of a sound mind. 

It was only natural for me to be protective of my family, determined that they would not get c-diff by getting spores on their hands and touching their mouths. My dedicated husband and caretaker was the most at risk since he spent so much time with me. I would not allow anyone else to use my bathroom, and even though I was already infected, as my health permitted, I would wash everything in my bathroom with Clorox. This is the only disinfectant available to the average person that will kill the spores. I also used Clorox on door handles, the telephone, computer keys, and anything that I touched. This was being overly cautious as I washed my hands several times a day, ending with a Clorox rinse. When company visited, I kept my distance, concerned for their health.

I wanted to be rid of c-diff; it was stealing my life from me.  I had seen many experts, but no one could offer any additional help other than to continue prescribing the Vancomycin--Vanco for short.  In desperation I picked up the phone book and checked out the listing for gastroenterologists. Why not try yet another one, I thought. Yes, it would wear me out to get there as it did every time I had to see a doctor,  but I was desperate. This was a woman doctor that I knew nothing about, but I called and got an appointment as early as possible.  Dr. Beth was pleasant and very young. When I asked her if she had ever treated c-diff patients, she said that she hadn't. Off to a good start, huh? But she did know something about the disease and, after taking my history, wanted to try something else using the Vanco.  She wanted me to take the medicine, then stop for a couple of days, and then start again. She said that the medicine would wipe out some of the c-diff bacteria at first but  the bugs would run and hide--even in the appendix.  By waiting and attacking again, we would kill more of them.  We would repeat this process over and over until the c-diff was slowly eliminated.  We would also decrease the dosage after a while. 

It worked!  I started feeling better and could eat and keep more food down.  Eventually, I tested negative for c-diff, and our household celebrated and thanked God. I was far from well, but felt I had a fighting chance to get that way.

Doctors, Hospital Admissions, and "Oh No, Not Again!"-- 2009-2012

Although weak, nauseous, and still in a lot of pain, I had defeated -diff.  Now I could start rebuilding my health with vitamins, exercise, and seeing my doctor for advice.  It felt wonderful to have hope that I could eventually get back to really living, not just existing in bed or on my couch. Then my first hurdle to my way back presented itself.  For several years my gynecologist had been keeping tabs on a cyst on my right ovary. It was small and was diagnosed as non-cancerous; however, it had to be watched carefully, especially since my mother had died of ovarian cancer.  I periodically had scans to make sure that there had been no significant growth, and now that I had beaten c-diff, I managed to get to the diagnostic center to get an up-to-date scan. The news was shocking! The cyst was growing at a fast rate and had to be surgically removed immediately. Though I wasn't in good shape for surgery and was concerned about the need for antibiotics, I had no choice. My right ovary and the cyst were both  removed without any problems--other than I had a bad reaction to the anesthesia and caused the staff to be afraid they were losing me.  The cyst was non-malignant, and I didn't need antibiotics so I went home to recover and continue my journey toward better health. I wish I could say that the journey was easy, but the c-diff had caused me to be so rundown that it was an up and down battle. I tried to walk by holding onto the walls of rooms but I would soon tire. However,  I wouldn't give up as I had won the main battle and Jesus gave me added strength. My strength might fail but not His. I got strong enough to make it to church a couple of times where I received a warm welcome. I received physical therapy which helped on the days that I was well enough to keep my appointment. There were times I still suffered from dehydration and would have to go to the hospital.

I purchased a pedal cycle so that I could sit on the sofa in the family room, watch television, and exercise my legs. This seemed to help a lot until I did something dumb. I tripped over the cycle and fell into it, plunging a pedal into my right side and then continued falling into doggie stairs for our two older dogs that my husband had  made so they could climb onto the sofa. I broke one rib, bruised several others (had a nine inch round bruise) and a side that was throbbing.  I was on strong pain killers for several weeks which totally messed up my already messed up digestive system. Nearly everyone who has c-diff, continues to have a messed up stomach for months or years afterward--they also have IBS.  I was discouraged and depressed but God sent someone special to help me through the bad times that were ahead.  Our church had a new pastor--Harriet Hutton--and she visited me several times, reminding me of God's love and praying for me. I instantly felt connected to this woman of God and thanked my Lord and Savior for sending me this angel. 

A few months later I woke up extremely sick and running a high fever. I didn't even argue when my husband said we had to get to the hospital, because I knew something was really wrong.  As it turned out I had severe diverticulitis so was admitted for treatment.  After the tests were completed, a surgeon came into my room and repeated the diverticulitis diagnosis but also added that I had a tumor and c-diff. All I heard were the words c-diff...nothing else registered, and I felt like I had entered into a darkness that was trapping me forever.  The c-diff reoccurred because I had been given powerful antibiotics to fight the diverticulitis, something I had to have to save my life.  I was put in isolation and kept in the hospital for two weeks, being told I needed surgery to remove part of my colon and the tumor. To prepare for the surgery, a picc line was inserted into my arm. The picc line caused a blood clot for which I had to be on blood thinner for several months. The good news is that the diverticulitis healed without surgery and the tumor turned out to be a shadow on the film.  I want to mention that while I was in isolation, Pastor Harriet visited me, wearing a gown, mask, gloves and whatever else the hospital required for visitors.  It was lonely in this room, although my husband was by my side at all times, but for Pastor Harriet to visit me was something I would always remember. Anyway, it was back home where I would begin my second battle with c-diff.