Emotions are a mess!

[writerbettie]

I have been sick since April with this disease. I've had several rounds of Flagyl and one of Vancocin. Each time I hold my breath, afraid that it will come back and it does. Tomorrow I finish my first round of Vanco, and I also see a new specialist. I feel defeated before even seeing her. I've lost 22 pounds, am exhausted and weak, and angry with my body. I told my husband that during a severe flare of this "monster" I feel dead inside. and I do. C Diff is truly a "beast"...it is what I think of and fear when I awake in the morning and what I think of and fear when I go to sleep. I'm frightened but don't feel so alone since I've found this group.

[Jayne]

So sorry to hear you've joined the "C.Diff Club" too. I must say though finding this support group has been a "Godsend". We can all relate to how you're feeling. I too had my 1st episode in April. On day 10 of Flagyl ended up in hospital for 6 days (see my case history). Have been dealing with D ever since. Before this I was a healthy eater with normal daily bms. GI isn't sure if I ever really got rid of it or now have colitis or possibly Chrohns. Time & test$ will eventually tell. We will have our coping days & we will have our hopeless days. Try just making it through to the next day-sometimes that's enough. Read the "Succes Stories" when you're blue, it helps me some. It's OK to be upset too.

[Jayne]

writterbettie...have you posted your "case history"-I didn't see it listed (I could be blind). If not, I encourage you to.

[Jodie]

Hang in there, we are all going thru what you are going thru!!! You are definitely not alone!!

jodie

[Nancy1]

writterbettie,
Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all sections of FAQ that concern you.

I had cdiff for 8 months and lost 27 pounds. I can understand your feeling dead inside. I wanted to die (more than once), because I was so afraid that I would never get better, I would never have a life again, I would always be chained to the toilet. It does get better, I assure you. Everyone beats it eventually. I recommend reading the Ten Commandments of Surviving Cdiff (in the FAQ section), especially #7, about never giving up hope.

I hope you like your new specialist. My GI doc gave up on me, but I found an ID doc who was very good. What finally worked for me was pulsing (see Lauren's protocol in FAQ), and others have recovered after tapering. Have you tried either of these? Good luck.

[writerbettie]

writterbettie...have you posted your "case history"-I didn't see it listed (I could be blind). If not, I encourage you to.

Jayne, I will write my case history in the near future. You aren't blind. My life has been plagued with health problems that are experienced by only a small percentage of the population....I call them life-stealing diseases. This C Diff isn't as rare as my regular doctor led me to believe but having this "one more monster" is playing havic with my emotions. I'm not sure I'm ready to deal with writing about it yet. Thank you for your encouragement.

[writerbettie]

writterbettie,

I hope you like your new specialist. My GI doc gave up on me, but I found an ID doc who was very good. What finally worked for me was pulsing (see Lauren's protocol in FAQ), and others have recovered after tapering. Have you tried either of these? Good luck.

Thank you Nancy1 for all the helpful information. I did like my new specialist as she seemed to understand how terrible this "monster" can be. She put me on a six-week course of Vanco, at first tapering and ending with pulsing. I pray it works. She also told me to take Florastor. My main concern is that after finishing the ten day course of Vanco, I still have some stomach pain. When I finished the Flagyl (with its horrible side effects), I was pain free until the infection returned. I can't believe how weak my legs are. I am disappointed that my primary care physician knew so little about this. He said to take the Flagyl and I woud be fine. I didn't know that I wasn't supposed to take Immodium in the midst of an infection. This made the A and B toxins worse....maybe this is one reason I ran such a high fever the first time around. Each time the infection returns the fever is less.

[Nancy1]

writerbettie,
I had pain both with cdiff and after I recovered. I think mine afterwards was mainly due to gas, and I found that Gas-X helped a lot. I also had a lot of exhaustion and weakness; before cdiff I did a lot of walking, but during it I was too tired to do much, not to mention worrying about bathroom runs.

I was misdiagnosed for a month, and during that time my primary care doc gave me Lomotil. I think that made my cdiff worse, and I think that Immodium might do the same thing. My primary care doc also didn't know much about cdiff. Many docs don't. During that miserable month she told me that I couldn't have a bacterial infection because it had not responded to Cipro or levaquin. Hahaha.